The 2002 Official Patient's Sourcebook on Lyme Disease

THE 2002 OFFICIAL PATIENT’S SOURCEBOOK

on

J AMES N. P ARKER , M.D. AND P HILIP M. P ARKER , P H .D., E DITORS

ii

ICON Health Publications ICON Group International, Inc. 4370 La Jolla Village Drive, 4th Floor San Diego, CA 92122 USA Copyright Ó2002 by ICON Group International, Inc. Copyright Ó2002 by ICON Group International, Inc. All rights reserved. This book is protected by copyright. No part of it may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without written permission from the publisher. Printed in the United States of America. Last digit indicates print number: 10 9 8 7 6 4 5 3 2 1

Publisher, Health Care: Tiffany LaRochelle Editor(s): James Parker, M.D., Philip Parker, Ph.D. Publisher's note: The ideas, procedures, and suggestions contained in this book are not intended as a substitute for consultation with your physician. All matters regarding your health require medical supervision. As new medical or scientific information becomes available from academic and clinical research, recommended treatments and drug therapies may undergo changes. The authors, editors, and publisher have attempted to make the information in this book up to date and accurate in accord with accepted standards at the time of publication. The authors, editors, and publisher are not responsible for errors or omissions or for consequences from application of the book, and make no warranty, expressed or implied, in regard to the contents of this book. Any practice described in this book should be applied by the reader in accordance with professional standards of care used in regard to the unique circumstances that may apply in each situation, in close consultation with a qualified physician. The reader is advised to always check product information (package inserts) for changes and new information regarding dose and contraindications before taking any drug or pharmacological product. Caution is especially urged when using new or infrequently ordered drugs, herbal remedies, vitamins and supplements, alternative therapies, complementary therapies and medicines, and integrative medical treatments. Cataloging-in-Publication Data Parker, James N., 1961Parker, Philip M., 1960The 2002 Official Patient’s Sourcebook on Lyme Disease: A Revised and Updated Directory for the Internet Age/James N. Parker and Philip M. Parker, editors p. cm. Includes bibliographical references, glossary and index. ISBN: 0-597-83169-6 1. Lyme Disease-Popular works. I. Title.

iii

Disclaimer This publication is not intended to be used for the diagnosis or treatment of a health problem or as a substitute for consultation with licensed medical professionals. It is sold with the understanding that the publisher, editors, and authors are not engaging in the rendering of medical, psychological, financial, legal, or other professional services. References to any entity, product, service, or source of information that may be contained in this publication should not be considered an endorsement, either direct or implied, by the publisher, editors or authors. ICON Group International, Inc., the editors, or the authors are not responsible for the content of any Web pages nor publications referenced in this publication.

Copyright Notice If a physician wishes to copy limited passages from this sourcebook for patient use, this right is automatically granted without written permission from ICON Group International, Inc. (ICON Group). However, all of ICON Group publications are copyrighted. With exception to the above, copying our publications in whole or in part, for whatever reason, is a violation of copyright laws and can lead to penalties and fines. Should you want to copy tables, graphs or other materials, please contact us to request permission (e-mail: [email protected]). ICON Group often grants permission for very limited reproduction of our publications for internal use, press releases, and academic research. Such reproduction requires confirmed permission from ICON Group International Inc. The disclaimer above must accompany all reproductions, in whole or in part, of this sourcebook.

iv

Dedication To the healthcare professionals dedicating their time and efforts to the study of Lyme disease.

Acknowledgements The collective knowledge generated from academic and applied research summarized in various references has been critical in the creation of this sourcebook which is best viewed as a comprehensive compilation and collection of information prepared by various official agencies which directly or indirectly are dedicated to Lyme disease. All of the Official Patient’s Sourcebooks draw from various agencies and institutions associated with the United States Department of Health and Human Services, and in particular, the Office of the Secretary of Health and Human Services (OS), the Administration for Children and Families (ACF), the Administration on Aging (AOA), the Agency for Healthcare Research and Quality (AHRQ), the Agency for Toxic Substances and Disease Registry (ATSDR), the Centers for Disease Control and Prevention (CDC), the Food and Drug Administration (FDA), the Healthcare Financing Administration (HCFA), the Health Resources and Services Administration (HRSA), the Indian Health Service (IHS), the institutions of the National Institutes of Health (NIH), the Program Support Center (PSC), and the Substance Abuse and Mental Health Services Administration (SAMHSA). In addition to these sources, information gathered from the National Library of Medicine, the United States Patent Office, the European Union, and their related organizations has been invaluable in the creation of this sourcebook. Some of the work represented was financially supported by the Research and Development Committee at INSEAD. This support is gratefully acknowledged. Finally, special thanks are owed to Tiffany LaRochelle for her excellent editorial support.

v

About the Editors James N. Parker, M.D. Dr. James N. Parker received his Bachelor of Science degree in Psychobiology from the University of California, Riverside and his M.D. from the University of California, San Diego. In addition to authoring numerous research publications, he has lectured at various academic institutions. Dr. Parker is the medical editor for the Official Patient’s Sourcebook series published by ICON Health Publications.

Philip M. Parker, Ph.D. Philip M. Parker is the Eli Lilly Chair Professor of Innovation, Business and Society at INSEAD (Fontainebleau, France and Singapore). Dr. Parker has also been Professor at the University of California, San Diego and has taught courses at Harvard University, the Hong Kong University of Science and Technology, the Massachusetts Institute of Technology, Stanford University, and UCLA. Dr. Parker is the associate editor for the Official Patient’s Sourcebook series published by ICON Health Publications.

vi

About ICON Health Publications In addition to Lyme disease, Official Patient’s Sourcebooks are available for the following related topics: ·

The Official Patient's Sourcebook on Acne

·

The Official Patient's Sourcebook on Acne Rosacea

·

The Official Patient's Sourcebook on Atopic Dermatitis

·

The Official Patient's Sourcebook on Behçet Syndrome

·

The Official Patient's Sourcebook on Epidermolysis Bullosa

·

The Official Patient's Sourcebook on Lichen Sclerosus

·

The Official Patient's Sourcebook on Psoriasis

·

The Official Patient's Sourcebook on Raynaud's Phenomenon

·

The Official Patient's Sourcebook on Scleroderma

·

The Official Patient's Sourcebook on Sjogren's Syndrome

·

The Official Patient's Sourcebook on Vitiligo

To discover more about ICON Health Publications, simply check with your preferred online booksellers, including Barnes & Noble.com and Amazon.com which currently carry all of our titles. Or, feel free to contact us directly for bulk purchases or institutional discounts: ICON Group International, Inc. 4370 La Jolla Village Drive, Fourth Floor San Diego, CA 92122 USA Fax: 858-546-4341 Web site: www.icongrouponline.com/health

Contents vii

Table of Contents INTRODUCTION...................................................................................... 1

Overview............................................................................................................... 1 Organization......................................................................................................... 3 Scope ..................................................................................................................... 3 Moving Forward................................................................................................... 4

PART I: THE ESSENTIALS ................................................. 7 CHAPTER 1. THE ESSENTIALS ON LYME DISEASE: GUIDELINES........... 9

Overview............................................................................................................... 9 What Is Lyme Disease?....................................................................................... 10 How Lyme Disease Became Known.................................................................... 11 Symptoms of Lyme Disease ................................................................................ 12 How Lyme Disease Is Diagnosed........................................................................ 13 How Lyme Disease Is Treated ............................................................................ 16 Lyme Disease Prevention ................................................................................... 17 More Guideline Sources ..................................................................................... 20 Vocabulary Builder............................................................................................. 27

CHAPTER 2. SEEKING GUIDANCE ....................................................... 31

Overview............................................................................................................. 31 Associations and Lyme Disease .......................................................................... 31 Finding More Associations................................................................................. 38 Finding Doctors.................................................................................................. 40 Finding a Dermatologist..................................................................................... 41 Selecting Your Doctor ........................................................................................ 42 Working with Your Doctor ................................................................................ 42 Broader Health-Related Resources ..................................................................... 44 Vocabulary Builder............................................................................................. 44

CHAPTER 3. CLINICAL TRIALS AND LYME DISEASE ........................... 47

Overview............................................................................................................. 47 Recent Trials on Lyme Disease........................................................................... 50 Benefits and Risks............................................................................................... 56 Keeping Current on Clinical Trials.................................................................... 59 General References.............................................................................................. 59 Vocabulary Builder............................................................................................. 60

PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL.................................................. 63 CHAPTER 4. STUDIES ON LYME DISEASE ............................................ 65

Overview............................................................................................................. 65 The Combined Health Information Database ..................................................... 65 Federally-Funded Research on Lyme Disease..................................................... 75

viii Contents

E-Journals: PubMed Central .............................................................................. 84 The National Library of Medicine: PubMed ...................................................... 89 Vocabulary Builder............................................................................................. 90

CHAPTER 5. PATENTS ON LYME DISEASE ........................................... 95

Overview............................................................................................................. 95 Patents on Lyme Disease .................................................................................... 96 Patent Applications on Lyme Disease .............................................................. 113 Keeping Current ............................................................................................... 113 Vocabulary Builder........................................................................................... 113

CHAPTER 6. BOOKS ON LYME DISEASE............................................. 115

Overview........................................................................................................... 115 Book Summaries: Federal Agencies .................................................................. 115 Book Summaries: Online Booksellers ............................................................... 121 The National Library of Medicine Book Index ................................................. 125 Chapters on Lyme Disease................................................................................ 129 General Home References ................................................................................. 133 Vocabulary Builder........................................................................................... 134

CHAPTER 7. MULTIMEDIA ON LYME DISEASE .................................. 139

Overview........................................................................................................... 139 Video Recordings .............................................................................................. 139 Bibliography: Multimedia on Lyme Disease .................................................... 140 Vocabulary Builder........................................................................................... 143

CHAPTER 8. PERIODICALS AND NEWS ON LYME DISEASE ............... 145

Overview........................................................................................................... 145 News Services & Press Releases ....................................................................... 145 Newsletter Articles ........................................................................................... 156 Academic Periodicals covering Lyme Disease .................................................. 158 Vocabulary Builder........................................................................................... 159

CHAPTER 9. PHYSICIAN GUIDELINES AND DATABASES ................... 161

Overview........................................................................................................... 161 NIH Guidelines................................................................................................. 161 NIH Databases.................................................................................................. 162 Other Commercial Databases ........................................................................... 168 The Genome Project and Lyme Disease............................................................ 168 Specialized References....................................................................................... 173 Vocabulary Builder........................................................................................... 174

CHAPTER 10. DISSERTATIONS ON LYME DISEASE ............................ 175

Overview........................................................................................................... 175 Dissertations on Lyme Disease......................................................................... 175 Keeping Current ............................................................................................... 176

PART III. APPENDICES .................................................. 179 APPENDIX A. RESEARCHING YOUR MEDICATIONS.......................... 181

Contents

ix

Overview........................................................................................................... 181 Your Medications: The Basics .......................................................................... 182 Learning More about Your Medications .......................................................... 183 Commercial Databases...................................................................................... 187 Contraindications and Interactions (Hidden Dangers) ................................... 188 A Final Warning .............................................................................................. 189 General References............................................................................................ 190 Vocabulary Builder........................................................................................... 191

APPENDIX B. RESEARCHING ALTERNATIVE MEDICINE ................... 193

Overview........................................................................................................... 193 What Is CAM? ................................................................................................. 193 What Are the Domains of Alternative Medicine?............................................ 194 Can Alternatives Affect My Treatment? ......................................................... 197 Finding CAM References on Lyme Disease ..................................................... 198 Additional Web Resources................................................................................ 203 General References............................................................................................ 206 Vocabulary Builder........................................................................................... 207

APPENDIX C. RESEARCHING NUTRITION ......................................... 209

Overview........................................................................................................... 209 Food and Nutrition: General Principles........................................................... 210 Finding Studies on Lyme Disease .................................................................... 214 Federal Resources on Nutrition........................................................................ 217 Additional Web Resources................................................................................ 218 Vocabulary Builder........................................................................................... 219

APPENDIX D. FINDING MEDICAL LIBRARIES.................................... 223

Overview........................................................................................................... 223 Preparation ....................................................................................................... 223 Finding a Local Medical Library ...................................................................... 224 Medical Libraries Open to the Public............................................................... 224

APPENDIX E. YOUR RIGHTS AND INSURANCE ................................. 231

Overview........................................................................................................... 231 Your Rights as a Patient................................................................................... 231 Patient Responsibilities .................................................................................... 235 Choosing an Insurance Plan............................................................................. 236 Medicare and Medicaid .................................................................................... 238 NORD’s Medication Assistance Programs ..................................................... 241 Additional Resources ........................................................................................ 242

ONLINE GLOSSARIES.................................................... 243 Online Dictionary Directories.......................................................................... 252

LYME DISEASE GLOSSARY.......................................... 253 INDEX................................................................................... 271

x

Contents

Introduction

1

INTRODUCTION Overview Dr. C. Everett Koop, former U.S. Surgeon General, once said, “The best prescription is knowledge.”1 The Agency for Healthcare Research and Quality (AHRQ) of the National Institutes of Health (NIH) echoes this view and recommends that every patient incorporate education into the treatment process. According to the AHRQ: Finding out more about your condition is a good place to start. By contacting groups that support your condition, visiting your local library, and searching on the Internet, you can find good information to help guide your treatment decisions. Some information may be hard to find—especially if you don't know where to look.2 As the AHRQ mentions, finding the right information is not an obvious task. Though many physicians and public officials had thought that the emergence of the Internet would do much to assist patients in obtaining reliable information, in March 2001 the National Institutes of Health issued the following warning: The number of Web sites offering health-related resources grows every day. Many sites provide valuable information, while others may have information that is unreliable or misleading.3

Quotation from http://www.drkoop.com. The Agency for Healthcare Research and Quality (AHRQ): http://www.ahcpr.gov/consumer/diaginfo.htm. 3 From the NIH, National Cancer Institute (NCI): http://cancertrials.nci.nih.gov/beyond/evaluating.html. 1 2

2

Lyme Disease

Since the late 1990s, physicians have seen a general increase in patient Internet usage rates. Patients frequently enter their doctor's offices with printed Web pages of home remedies in the guise of latest medical research. This scenario is so common that doctors often spend more time dispelling misleading information than guiding patients through sound therapies. The Official Patient’s Sourcebook on Lyme Disease has been created for patients who have decided to make education and research an integral part of the treatment process. The pages that follow will tell you where and how to look for information covering virtually all topics related to Lyme disease, from the essentials to the most advanced areas of research. The title of this book includes the word “official.” This reflects the fact that the sourcebook draws from public, academic, government, and peerreviewed research. Selected readings from various agencies are reproduced to give you some of the latest official information available to date on Lyme disease. Given patients’ increasing sophistication in using the Internet, abundant references to reliable Internet-based resources are provided throughout this sourcebook. Where possible, guidance is provided on how to obtain free-ofcharge, primary research results as well as more detailed information via the Internet. E-book and electronic versions of this sourcebook are fully interactive with each of the Internet sites mentioned (clicking on a hyperlink automatically opens your browser to the site indicated). Hard copy users of this sourcebook can type cited Web addresses directly into their browsers to obtain access to the corresponding sites. Since we are working with ICON Health Publications, hard copy Sourcebooks are frequently updated and printed on demand to ensure that the information provided is current. In addition to extensive references accessible via the Internet, every chapter presents a “Vocabulary Builder.” Many health guides offer glossaries of technical or uncommon terms in an appendix. In editing this sourcebook, we have decided to place a smaller glossary within each chapter that covers terms used in that chapter. Given the technical nature of some chapters, you may need to revisit many sections. Building one’s vocabulary of medical terms in such a gradual manner has been shown to improve the learning process. We must emphasize that no sourcebook on Lyme disease should affirm that a specific diagnostic procedure or treatment discussed in a research study, patent, or doctoral dissertation is “correct” or your best option. This sourcebook is no exception. Each patient is unique. Deciding on appropriate

Introduction

3

options is always up to the patient in consultation with their physician and healthcare providers.

Organization This sourcebook is organized into three parts. Part I explores basic techniques to researching Lyme disease (e.g. finding guidelines on diagnosis, treatments, and prognosis), followed by a number of topics, including information on how to get in touch with organizations, associations, or other patient networks dedicated to Lyme disease. It also gives you sources of information that can help you find a doctor in your local area specializing in treating Lyme disease. Collectively, the material presented in Part I is a complete primer on basic research topics for patients with Lyme disease. Part II moves on to advanced research dedicated to Lyme disease. Part II is intended for those willing to invest many hours of hard work and study. It is here that we direct you to the latest scientific and applied research on Lyme disease. When possible, contact names, links via the Internet, and summaries are provided. It is in Part II where the vocabulary process becomes important as authors publishing advanced research frequently use highly specialized language. In general, every attempt is made to recommend “freeto-use” options. Part III provides appendices of useful background reading for all patients with Lyme disease or related disorders. The appendices are dedicated to more pragmatic issues faced by many patients with Lyme disease. Accessing materials via medical libraries may be the only option for some readers, so a guide is provided for finding local medical libraries which are open to the public. Part III, therefore, focuses on advice that goes beyond the biological and scientific issues facing patients with Lyme disease.

Scope While this sourcebook covers Lyme disease, your doctor, research publications, and specialists may refer to your condition using a variety of terms. Therefore, you should understand that Lyme disease is often considered a synonym or a condition closely related to the following: ·

Acrodermatitis Chronica Atrophicans

·

Bannworth's Syndrome

·

Lyme Arthritis

4

Lyme Disease

·

Lyme Borreliosis

In addition to synonyms and related conditions, physicians may refer to Lyme disease using certain coding systems. The International Classification of Diseases, 9th Revision, Clinical Modification (ICD-9-CM) is the most commonly used system of classification for the world's illnesses. Your physician may use this coding system as an administrative or tracking tool. The following classification is commonly used for Lyme disease:4 ·

088.81 lyme disease

For the purposes of this sourcebook, we have attempted to be as inclusive as possible, looking for official information for all of the synonyms relevant to Lyme disease. You may find it useful to refer to synonyms when accessing databases or interacting with healthcare professionals and medical librarians.

Moving Forward Since the 1980s, the world has seen a proliferation of healthcare guides covering most illnesses. Some are written by patients or their family members. These generally take a layperson's approach to understanding and coping with an illness or disorder. They can be uplifting, encouraging, and highly supportive. Other guides are authored by physicians or other healthcare providers who have a more clinical outlook. Each of these two styles of guide has its purpose and can be quite useful. As editors, we have chosen a third route. We have chosen to expose you to as many sources of official and peer-reviewed information as practical, for the purpose of educating you about basic and advanced knowledge as recognized by medical science today. You can think of this sourcebook as your personal Internet age reference librarian. Why “Internet age”? All too often, patients diagnosed with Lyme disease will log on to the Internet, type words into a search engine, and receive several Web site listings which are mostly irrelevant or redundant. These patients are left to wonder where the relevant information is, and how to obtain it. Since only the smallest fraction of information dealing with Lyme 4 This list is based on the official version of the World Health Organization's 9th Revision, International Classification of Diseases (ICD-9). According to the National Technical Information Service, “ICD-9CM extensions, interpretations, modifications, addenda, or errata other than those approved by the U.S. Public Health Service and the Health Care Financing Administration are not to be considered official and should not be utilized. Continuous maintenance of the ICD-9-CM is the responsibility of the federal government.”

Introduction

5

disease is even indexed in search engines, a non-systematic approach often leads to frustration and disappointment. With this sourcebook, we hope to direct you to the information you need that you would not likely find using popular Web directories. Beyond Web listings, in many cases we will reproduce brief summaries or abstracts of available reference materials. These abstracts often contain distilled information on topics of discussion. While we focus on the more scientific aspects of Lyme disease, there is, of course, the emotional side to consider. Later in the sourcebook, we provide a chapter dedicated to helping you find peer groups and associations that can provide additional support beyond research produced by medical science. We hope that the choices we have made give you the most options available in moving forward. In this way, we wish you the best in your efforts to incorporate this educational approach into your treatment plan. The Editors

7

PART I: THE ESSENTIALS

ABOUT PART I Part I has been edited to give you access to what we feel are “the essentials” on Lyme disease. The essentials of a disease typically include the definition or description of the disease, a discussion of who it affects, the signs or symptoms associated with the disease, tests or diagnostic procedures that might be specific to the disease, and treatments for the disease. Your doctor or healthcare provider may have already explained the essentials of Lyme disease to you or even given you a pamphlet or brochure describing Lyme disease. Now you are searching for more in-depth information. As editors, we have decided, nevertheless, to include a discussion on where to find essential information that can complement what your doctor has already told you. In this section we recommend a process, not a particular Web site or reference book. The process ensures that, as you search the Web, you gain background information in such a way as to maximize your understanding.

Guidelines

CHAPTER 1. GUIDELINES

9

THE ESSENTIALS ON LYME DISEASE:

Overview Official agencies, as well as federally-funded institutions supported by national grants, frequently publish a variety of guidelines on Lyme disease. These are typically called “Fact Sheets” or “Guidelines.” They can take the form of a brochure, information kit, pamphlet, or flyer. Often they are only a few pages in length. The great advantage of guidelines over other sources is that they are often written with the patient in mind. Since new guidelines on Lyme disease can appear at any moment and be published by a number of sources, the best approach to finding guidelines is to systematically scan the Internet-based services that post them.

The National Institutes of Health (NIH)5 The National Institutes of Health (NIH) is the first place to search for relatively current patient guidelines and fact sheets on Lyme disease. Originally founded in 1887, the NIH is one of the world's foremost medical research centers and the federal focal point for medical research in the United States. At any given time, the NIH supports some 35,000 research grants at universities, medical schools, and other research and training institutions, both nationally and internationally. The rosters of those who have conducted research or who have received NIH support over the years include the world's most illustrious scientists and physicians. Among them are 97 scientists who have won the Nobel Prize for achievement in medicine.

5

Adapted from the NIH: http://www.nih.gov/about/NIHoverview.html.

10 Lyme Disease

There is no guarantee that any one Institute will have a guideline on a specific disease, though the National Institutes of Health collectively publish over 600 guidelines for both common and rare diseases. The best way to access NIH guidelines is via the Internet. Although the NIH is organized into many different Institutes and Offices, the following is a list of key Web sites where you are most likely to find NIH clinical guidelines and publications dealing with Lyme disease and associated conditions: ·

Office of the Director (OD); guidelines consolidated across agencies available at http://www.nih.gov/health/consumer/conkey.htm

·

National Library of Medicine (NLM); extensive encyclopedia (A.D.A.M., Inc. ) with guidelines available at http://www.nlm.nih.gov/medlineplus/healthtopics.html

·

National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS); fact sheets and guidelines at http://www.nih.gov/niams/healthinfo/

Among those listed above, the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) is especially noteworthy. The mission of NIAMS, a part of the National Institutes of Health (NIH), is to support research into the causes, treatment, and prevention of arthritis and musculoskeletal and skin diseases, the training of basic and clinical scientists to carry out this research, and the dissemination of information on research progress in these diseases. The National Institute of Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse is a public service sponsored by the NIAMS that provides health information and information sources. The NIAMS provides the following guideline concerning Lyme disease.6

What Is Lyme Disease?7 In the early 1970s, a mysterious clustering of arthritis cases occurred among children in Lyme, Connecticut, and surrounding towns. Medical researchers soon recognized the illness as a distinct disease, which they called Lyme disease. They subsequently described the clinical features of Lyme disease, established the usefulness of antibiotic therapy in its treatment, identified the deer tick as the key to its spread, and isolated the bacterium that caused it. 6This and other passages are adapted from the NIH and NIAMS (http://www.niams.nih.gov/hi/index.htm). “Adapted” signifies that the text is reproduced with attribution, with some or no editorial adjustments. 7 Adapted from the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS): http://www.niaid.nih.gov/publications/lyme/contents.htm.

Guidelines 11

Lyme disease is still mistaken for other ailments, and it continues to pose many other challenges: it can be difficult to diagnose because of the inadequacies of today's laboratory tests, and it can be troublesome to treat in its later phases. Development of a vaccine to prevent Lyme disease is underway.

How Lyme Disease Became Known Lyme disease was first recognized in 1975 after researchers investigated why unusually large numbers of children were being diagnosed with juvenile rheumatoid arthritis in Lyme, Connecticut, and two neighboring towns. The investigators discovered that most of the affected children lived near wooded areas that harbored ticks. They also found that the children's first symptoms typically started in the summer months coinciding with the height of the tick season. Several of the patients interviewed reported having a skin rash just before developing their arthritis, and many also recalled being bitten by a tick at the rash site. Further investigations resulted in the discovery that tiny deer ticks infected with a spiral-shaped bacterium or spirochete (which was later named Borrelia burgdorferi) were responsible for the outbreak of arthritis in Lyme.

Ticks that Most Commonly Transmit B. burgdorferi in the U.S. These ticks are all quite similar in appearance: ·

Ixodes scapularis -most common in the northeast and midwest. Also found in the south and southeast.

·

Ixodes pacificus -found on west coast.

In Europe, a skin rash similar to that of Lyme disease had been described in medical literature dating back to the turn of the century. Lyme disease may have spread from Europe to the United States in the early 1900s but only recently was recognized as a distinct illness. The ticks most commonly infected with B. burgdorferi usually feed and mate on deer during the adult part of their life cycle. The recent resurgence of the deer population in the northeast and the influx of suburban developments into rural areas where deer ticks are commonly found have probably contributed to the disease's rising prevalence.

12 Lyme Disease

The number of reported cases of Lyme disease, as well as the number of geographic areas in which it is found, has been increasing. Lyme disease has been reported in nearly all states in this country, although most cases are concentrated in the coastal northeast, mid-Atlantic states, Wisconsin and Minnesota, and northern California. Lyme disease is endemic in large areas of Asia and Europe.

Symptoms of Lyme Disease Erythema Migrans In most people, the first symptom of Lyme disease is a red rash known as erythema migrans (EM). The telltale rash starts as a small red spot at the site of the tick bite. The spot expands over a period of days or weeks, forming a circular or ovalshaped rash. Sometimes the rash resembles a bull's eye, appearing as a red ring surrounding a clear area with a red center. The rash, which can range in size from that of a dime to the entire width of a person's back, appears within a few weeks of a tick bite and usually occurs at the site of a bite. As infection spreads, rashes can appear at different sites on the body. Erythema migrans is often accompanied by symptoms such as fever, headache, stiff neck, body aches, and fatigue. Although these flu-like symptoms may resemble those of common viral infections, Lyme disease symptoms tend to persist or may occur intermittently.

Arthritis After several months of being infected by B. burgdorferi, slightly more than half of those people not treated with antibiotics develop recurrent attacks of painful and swollen joints that last a few days to a few months. The arthritis can shift from one joint to another; the knee is most commonly affected. About 10 to 20 percent of untreated patients will go on to develop chronic arthritis.

Neurological Symptoms Lyme disease can also affect the nervous system, causing symptoms such as stiff neck and severe headache (meningitis), temporary paralysis of facial muscles (Bell's palsy), numbness, pain or weakness in the limbs, or poor

Guidelines 13

motor coordination. More subtle changes such as memory loss, difficulty with concentration, and a change in mood or sleeping habits have also been associated with Lyme disease. Nervous system abnormalities usually develop several weeks, months, or even years following an untreated infection. These symptoms often last for weeks or months and may recur. Heart Problems Fewer than one out of ten Lyme disease patients develops heart problems, such as an irregular heartbeat, which can be signalled by dizziness or shortness of breath. These symptoms rarely last more than a few days or weeks. Such heart abnormalities generally surface several weeks after infection.

Other Symptoms Less commonly, Lyme disease can result in eye inflammation, hepatitis, and severe fatigue, although none of these problems is likely to appear without other Lyme disease symptoms being present.

How Lyme Disease Is Diagnosed Lyme disease may be difficult to diagnose because many of its symptoms mimic those of other disorders. In addition, the only distinctive hallmark unique to Lyme disease-the erythema migrans rash-is absent in at least onefourth of the people who become infected. The results of recent studies indicate that an infected tick must be attached to a person's skin for at least 2 days to transmit the Lyme bacteria. Although a tick bite is an important clue for diagnosis, many patients cannot recall having been bitten recently by a tick. This is not surprising because the tick is tiny, and a tick bite is usually painless. When a patient with possible Lyme disease symptoms does not develop the distinctive rash, a physician will rely on a detailed medical history and a careful physical examination for essential clues to diagnosis, with laboratory tests playing a supportive role.

14 Lyme Disease

Most Common Symptoms of Lyme Disease Early infection: ·

EM Rash (erythema migrans)

·

Muscle and joint aches

·

Headache

·

Fever

·

Fatigue

Early disseminated infection: ·

Multiple EM lesions

·

Facial paralysis (Bell's palsy)

·

Meningitis

·

Radiculitis (numbness, tingling, burning)

·

Brief episodes of joint pain and swelling

Late infection: ·

Arthritis, intermittent or chronic

·

Encephalopathy (mild to moderate confusion)

Less Common Symptoms of Lyme Disease ·

Heart abnormalities

·

Eye problems such as conjunctivitis

·

Chronic skin disorders

·

Encephalomyelitis (limb weakness, motor coordination)

Blood Tests Unfortunately, the Lyme disease microbe itself is difficult to isolate or culture from body tissues or fluids. Most physicians look for evidence of antibodies against B. burgdorferi in the blood to confirm the bacterium's role as the cause of a patient's symptoms. Antibodies are molecules or small substances tailor-made by the immune system to lock onto and destroy specific microbial invaders.

Guidelines 15

Some patients experiencing nervous system symptoms may also undergo a spinal tap. Using this procedure, doctors can detect brain and spinal cord inflammation and can look for antibodies or genetic material of B. burgdorferi in the spinal fluid. The inadequacies of the currently available diagnostic tests may prevent physicians from firmly establishing whether the Lyme disease bacterium is causing a patient's symptoms. In the first few weeks following infection, antibody tests are not reliable because a patient's immune system has not produced enough antibodies to be detected. Antibiotics given to a patient early during infection may also prevent antibodies from reaching detectable levels, even though the Lyme disease bacterium is the cause of the patient's symptoms. The antibody test used most often is called an ELISA test. When an ELISA is positive, it should be confirmed with a second, more specific test, called a Western blot. Physicians must rely on their clinical judgment in diagnosing someone with Lyme disease even though the patient does not have the distinctive erythema migrans rash. Such a diagnosis would be based on the time of year, history of a tick bite, the patient's symptoms, and a thorough ruling out of other diseases that might cause those symptoms. Doctors may consider such factors as an initial appearance of symptoms during the summer months when tick bites are most likely to occur, and outdoor exposure in an area where Lyme disease is common. New Tests Under Development To improve the accuracy of Lyme disease diagnosis, NIH-supported researchers are developing a number of new tests that promise to be more reliable than currently available procedures. NIH scientists are developing tests that use the highly sensitive genetic engineering technique, known as polymerase chain reaction (PCR), to detect extremely small quantities of the genetic material of the Lyme disease bacterium in body tissues and fluids. A bacterial protein, outer surface protein (Osp) C, is proving useful for the early detection of specific antibodies in people with Lyme disease.

16 Lyme Disease

How Lyme Disease Is Treated Nearly all Lyme disease patients can be effectively treated with an appropriate course of antibiotic therapy. In general, the sooner such therapy is begun following infection, the quicker and more complete the recovery. Antibiotics, such as doxycycline, cefuroxime axetil, or amoxicillin taken orally for a few weeks, can speed the healing of the erythema migrans rash and usually prevent subsequent symptoms such as arthritis or neurological problems. Doxycycline will also effectively treat most other tick-borne diseases. Patients younger than 9 years or pregnant or lactating women with Lyme disease are treated with amoxicillin, cefuroxime axetil, or penicillin because doxycycline can stain the permanent teeth developing in young children or unborn babies. Patients allergic to penicillin are given erythromycin. Lyme disease patients with neurological symptoms are usually treated with the antibiotic ceftriaxone given intravenously once a day for a month or less. Most patients experience full recovery. Lyme arthritis may be treated with oral antibiotics. Patients with severe arthritis may be treated with ceftriaxone or penicillin given intravenously. To ease these patients' discomfort and further their healing, the physician might also give anti-inflammatory drugs, draw fluid from affected joints, or surgically remove the inflamed lining of the joints. Lyme arthritis resolves in most patients within a few weeks or months following antibiotic therapy, although it can take years to disappear completely in some people. Some Lyme disease patients who are untreated for several years may be cured of their arthritis with the proper antibiotic regimen. If the disease has persisted long enough, however, it may irreversibly damage the structure of the joints. Physicians prefer to treat Lyme disease patients experiencing heart symptoms with antibiotics such as ceftriaxone or penicillin given intravenously for about 2 weeks. If these symptoms persist or are severe enough, patients may also be treated with corticosteroids or given a temporary internal cardiac pacemaker. People with Lyme disease rarely experience long-term heart damage. Following treatment for Lyme disease, some people still have muscle achiness, neurologic symptoms such as problems with memory and

Guidelines 17

concentration, and persistent fatigue. NIH-sponsored researchers are conducting studies to determine the cause of these symptoms and how to best treat them. Researchers are also currently conducting studies to assess the optimal duration of antibiotic therapy for the various manifestations of Lyme disease. Investigators are also testing newly developed antibiotics for their effectiveness in countering the Lyme disease bacterium. Unfortunately, a bout with Lyme disease is no guarantee that the illness will be prevented in the future. The disease can strike more than once in the same individual if he or she is reinfected with the Lyme disease bacterium.

Lyme Disease Prevention Avoid Ticks At present, the best way to avoid Lyme disease is to avoid deer ticks. Although generally only about one percent of all deer ticks are infected with the Lyme disease bacterium, in some areas more than half of them harbor the microbe. Most people with Lyme disease become infected during the summer, when immature ticks are most prevalent. Except in warm climates, few people are bitten by deer ticks during winter months. Deer ticks are most often found in wooded areas and nearby shady grasslands, and are especially common where the two areas merge. Because the adult ticks feed on deer, areas where deer are frequently seen are likely to harbor sizable numbers of deer ticks. To help prevent tick bites, people entering tick-infested areas should walk in the center of trails to avoid picking up ticks from overhanging grass and brush. To minimize skin exposure to ticks, people outdoors in tick-infested areas should wear long pants and long-sleeved shirts that fit tightly at the ankles and wrists. As a further safeguard, people should wear a hat, tuck pant legs into socks, and wear shoes that leave no part of the feet exposed. To make it easy to detect ticks, people should wear light-colored clothing.

18 Lyme Disease

To repel ticks, people can spray their clothing with the insecticide permethrin, which is commonly found in lawn and garden stores. Insect repellents that contain a chemical called DEET (N,N-diethyl-M-toluamide) can also be applied to clothing or directly onto skin. Although highly effective, these repellents can cause some serious side effects, particularly when high concentrations are used repeatedly on the skin. Infants and children may be especially at risk for adverse reactions to DEET. Pregnant women should be especially careful to avoid ticks in Lyme disease areas because the infection can be transferred to the unborn child. Although rare, such a prenatal infection may make the woman more likely to miscarry or deliver a stillborn baby.

Check for Ticks Once indoors, people should check themselves and their children for ticks, particularly in the hairy regions of the body. The immature deer ticks that are most likely to cause Lyme disease are only about the size of a poppy seed, so they are easily mistaken for a freckle or a speck of dirt. All clothing should be washed. Pets should be checked for ticks before entering the house, because they, too, can develop symptoms of Lyme disease. In addition, a pet can carry ticks into the house. These ticks could fall off without biting the animal and subsequently attach to and bite people inside the house. If a tick is discovered attached to the skin, it should be pulled out gently with tweezers, taking care not to squeeze the tick's body. An antiseptic should then be applied to the bite. Studies by NIH-supported researchers suggest that a tick must be attached for at least 48 hours to transmit the Lyme disease bacterium, so prompt tick removal could prevent the disease. The risk of developing Lyme disease from a tick bite is small, even in heavily infested areas, and most physicians prefer not to treat patients bitten by ticks with antibiotics unless they develop symptoms of Lyme disease.

Vaccine Development Because Lyme disease is difficult to diagnose and sometimes does not respond to treatment, researchers are trying to create a vaccine that will protect people from the disorder. Vaccines work in part by prompting the body to generate antibodies. These custom-shaped molecules lock onto

Guidelines 19

specific proteins made by a virus or bacterium-often those proteins lodged in the microbe's outer coat. Once antibodies attach to an invading microbe, other immune defenses are evoked to destroy it. Development of an effective vaccine for Lyme disease has been difficult for a number of reasons. Scientists need to find out how the immune system protects against the bacterium. However, a vaccine based on the outer surface protein A (OspA) of the Lyme bacterium has been tested in people living in the northeastern United States, and preliminary results are encouraging.

Tips for Personal Protection ·

Avoid tick-infested areas, especially in May, June, and July.8

·

Wear light-colored clothing so that ticks can be easily spotted.

·

Wear long-sleeved shirts and closed shoes and socks.

·

Tuck pant legs into socks or boots and tuck shirt into pants.

·

Apply insect repellent containing permethrin to pants, socks, and shoes, and compounds containing DEET on exposed skin. Do not overuse these products.

·

Walk in the center of trails to avoid overgrown grass and brush.

·

After being outdoors in a tick-infested area, remove, wash, and dry clothing.

·

Inspect the body thoroughly and remove carefully any attached ticks.

·

Check pets for ticks.

How to Remove a Tick ·

Tug gently but firmly with blunt tweezers near the “head” of the tick until it releases its hold on the skin.

·

To lessen the chance of contact with the bacterium, try not to crush the tick's body or handle the tick with bare fingers.

·

Swab the bite area thoroughly with an antiseptic to prevent bacterial infection.

Local health departments and park or agricultural extension services may have information on the seasonal and geographic distribution of ticks in your area. 8

20 Lyme Disease

Tick Eradication In the meantime, researchers are trying to develop an effective strategy for ridding areas of deer ticks. Studies show that spraying of pesticide in wooded areas in the spring and fall can substantially reduce for more than a year the number of adult deer ticks residing there. Spraying on a large scale, however, may not be economically feasible and may prompt environmental or health concerns. Scientists are also pursuing biological control of deer ticks by introducing tiny stingerless wasps, which feed on immature ticks, into tick-infested areas. Researchers are currently assessing the effectiveness of this technique. Successful control of deer ticks will probably depend on a combination of tactics. More studies are needed before wide-scale tick control strategies can be implemented.

Research - The Key to Progress Although Lyme disease poses many challenges, they are challenges the medical research community is well equipped to meet. New information on Lyme disease is accumulating at a rapid pace, thanks to the scientific research being conducted around the world.

More Guideline Sources The guideline above on Lyme disease is only one example of the kind of material that you can find online and free of charge. The remainder of this chapter will direct you to other sources which either publish or can help you find additional guidelines on topics related to Lyme disease. Many of the guidelines listed below address topics that may be of particular relevance to your specific situation or of special interest to only some patients with Lyme disease. Due to space limitations these sources are listed in a concise manner. Do not hesitate to consult the following sources by either using the Internet hyperlink provided, or, in cases where the contact information is provided, contacting the publisher or author directly.

Guidelines 21

Topic Pages: MEDLINEplus For patients wishing to go beyond guidelines published by specific Institutes of the NIH, the National Library of Medicine has created a vast and patientoriented healthcare information portal called MEDLINEplus. Within this Internet-based system are “health topic pages.” You can think of a health topic page as a guide to patient guides. To access this system, log on to http://www.nlm.nih.gov/medlineplus/healthtopics.html.

If you do not find topics of interest when browsing health topic pages, then you can choose to use the advanced search utility of MEDLINEplus at http://www.nlm.nih.gov/medlineplus/advancedsearch.html. This utility is similar to the NIH Search Utility, with the exception that it only includes material linked within the MEDLINEplus system (mostly patient-oriented information). It also has the disadvantage of generating unstructured results. We recommend, therefore, that you use this method only if you have a very targeted search.

The Combined Health Information Database (CHID) CHID Online is a reference tool that maintains a database directory of thousands of journal articles and patient education guidelines on Lyme disease and related conditions. One of the advantages of CHID over other sources is that it offers summaries that describe the guidelines available, including contact information and pricing. CHID’s general Web site is http://chid.nih.gov/. To search this database, go to http://chid.nih.gov/detail/detail.html. In particular, you can use the advanced search options to look up pamphlets, reports, brochures, and information kits. The following was recently posted in this archive: ·

Poster Guide to Lyme Disease Source: Hartford, CT: Lyme Disease Foundation. 1998. 8 p. Contact: Available from Lyme Disease Foundation. 1 Financial Plaza, 18th Floor, Hartford, CT 06103. (800)886-LYME or (860) 525-2000. Fax (860) 525-TICK. E-mail: [email protected]. Website: www.lyme.org. PRICE: $1.00; bulk orders available at cost. Summary: This pamphlet provides people who have Lyme disease (LD) with information on this bacterial infection caused by a spirochete named Borrelia burgdorferi. The pamphlet presents the general signs and symptoms of LD, as well as those specific to the skin, brain, heart and

22 Lyme Disease

blood vessels, lungs, eyes, joints and muscles, liver, gastrointestinal system, and spleen. Other topics include the antibody and direct detection tests used to help diagnose LD, treatment, examples of LD rashes, and guidelines on reducing the risk of tick bites and removing a tick properly. The pamphlet concludes with information about the Lyme Disease Foundation. 10 figures. ·

Lyme Disease Source: Atlanta, GA: Arthritis Foundation. 1997. 10 p. Contact: Available from Arthritis Foundation. P.O. Box 1616, Alpharetta, GA 30009-1616. (800) 207-8633. Fax (credit card orders only) (770) 4429742. http://www.arthritis.org. PRICE: Single copy free from local Arthritis Foundation chapter (call 800-283-7800 for closest local chapter); bulk orders may be purchased from address above. Summary: This brochure for people with Lyme disease provides information on this bacterial infection that is transmitted by the bite of an infected tick. In the early stage, the disease may cause only mild flulike symptoms, but then a large, expanding red skin rash may develop around the bite. Joint or muscle pain can also follow. In later stages, Lyme disease can cause nervous system problems as well as arthritis, and immune system difficulties. It explains how early treatment with antibiotics can prevent more serious problems from developing. People can minimize exposure by wearing protective clothing, checking for ticks after being outdoors, keeping pets from roaming outside when ticks are active, and clearing brush and cutting long grass near the house. In addition, the brochure identifies sources of additional information. 3 figures.

·

Guide to Lyme Disease Source: Hartford, CT: Lyme Disease Foundation. 1997. 8 p. Contact: Available from Lyme Disease Foundation. 1 Financial Plaza, 18th Floor, Hartford, CT 06103. (800)886-LYME or (860) 525-2000. Fax (860) 525-TICK. E-mail: [email protected]. Website: www.lyme.org. PRICE: $1.00; bulk orders available at cost. Summary: This pamphlet provides the general public with information about Lyme disease (LD), a bacterial infection caused by a spirochete called Borrelia burgdorferi. The spirochetes live in animals in nature. When certain ticks bite infected animals, they ingest the bacteria, then transmit the infection through subsequent feedings to other hosts, including humans and pets. The pamphlet explains how LD affects the brain, eyes, skin, heart and blood vessels, joints, liver, lungs, muscles,

Guidelines 23

gastrointestinal system, spleen, and fetus. It identifies antibody and direct detection tests that may be used to help diagnose LD and explains how it is treated. The pamphlet offers tips on removing a tick and reducing the chances of getting a tick bite. In addition, the pamphlet provides information on the Lyme Disease Foundation and lists many of the free services it offers. 6 figures. ·

Lyme Disease and Pets Source: Hartford, CT: Lyme Disease Foundation. 1997. 6 p. Contact: Available from Lyme Disease Foundation. 1 Financial Plaza, 18th Floor, Hartford, CT 06103. (800)886-LYME or (860) 525-2000. Fax (860) 525-TICK. E-mail: [email protected]. Website: www.lyme.org. PRICE: $1.00; bulk orders available at cost. Summary: This pamphlet provides the general public with information about the occurrence of Lyme disease (LD) in pets. LD is an infectious, zoonotic disease transmitted by the bite of a blood-sucking arthropod, usually a tick. Ticks become infected with the LD spirochete, Borrelia burgdorferi, by feeding on infected host animals. The pamphlet explains the typical mode of transmission, highlights theoretical methods of transmission, and notes unlikely methods. The pamphlet outlines the symptoms of LD in cats, dogs, cattle, and horses and discusses the diagnosis, treatment, and prevention of LD in domestic animals.

·

Frequently Asked Questions About Lyme Disease Source: Hartford, CT: Lyme Disease Foundation. 1997. 6 p. Contact: Available from Lyme Disease Foundation. 1 Financial Plaza, 18th Floor, Hartford, CT 06103. (800)886-LYME or (860) 525-2000. Fax (860) 525-TICK. E-mail: [email protected]. Website: www.lyme.org. PRICE: $1.00; bulk orders available at cost. Summary: This pamphlet uses a question and answer format to provide the general public with information about Lyme disease (LD). The pamphlet describes the features of the LD rash and discusses the possible transmission of LD to an unborn child during pregnancy. Various tests may be used to help diagnose LD, such as immune system-based tests (the lymphocyte stimulation assay, antibody tests, and the Western blot test) and direct detection-based tests (the antigen capture assay and the polymerase chain reaction test). The pamphlet provides reasons for falsenegative and false-positive antibody test results. Other topics include relapse, sexual transmission of LD, treatment methods, and reasons for early treatment.

24 Lyme Disease

·

Understanding Lyme Disease: Prevention and Treatment Source: San Bruno, CA: StayWell Company. 1997. 6 p. Contact: Available from StayWell Company. 1100 Grundy Lane, San Bruno, CA 94066-3030. (800) 333-3032. Website: www.staywell.com. PRICE: Call or write for current pricing on single and bulk orders. Summary: This illustrated pamphlet provides the general public with information on the prevention and treatment of Lyme disease and the proper removal of a tick. Lyme disease is caused by bacteria that can be passed into the bloodstream through the bite of certain ticks. Common symptoms include a red, round rash; tiredness; sore or painful joints; headaches; and stiffness. Ways to prevent Lyme disease include avoiding areas infected with ticks, dressing with care, using insect repellent, staying on paved or cleared paths and trails, checking pets for ticks, and inspecting the body for ticks before going indoors. Diagnosis is based on a medical history, a physical examination, and, sometimes, a blood test. Antibiotics are used to treat the disease.

The National Guideline Clearinghouse™ The National Guideline Clearinghouse™ offers hundreds of evidence-based clinical practice guidelines published in the United States and other countries. You can search their site located at http://www.guideline.gov by using the keyword “Lyme disease” or synonyms. The following was recently posted: ·

Guidelines for laboratory evaluation in the diagnosis of Lyme disease. Source: American College of Physicians-American Society of Internal Medicine.; 1997 December 15; 5 pages (guideline); 14 pages (background paper) http://www.guideline.gov/FRAMESETS/guideline_fs.asp?guideline=00 0272&sSearch_string=Lyme+disease

·

Practice guidelines for the treatment of Lyme disease. Source: Infectious Diseases Society of America.; 2000 July; 14 pages http://www.guideline.gov/FRAMESETS/guideline_fs.asp?guideline=00 1898&sSearch_string=Lyme+disease

Guidelines 25

·

Recommendations for the use of Lyme disease vaccine. Source: Centers for Disease Control and Prevention.; 1999 June; 30 pages http://www.guideline.gov/FRAMESETS/guideline_fs.asp?guideline=00 1204&sSearch_string=Lyme+disease

Healthfinder™ Healthfinder™ is an additional source sponsored by the U.S. Department of Health and Human Services which offers links to hundreds of other sites that contain healthcare information. This Web site is located at http://www.healthfinder.gov. Again, keyword searches can be used to find guidelines. The following was recently found in this database: ·

Getting Lyme Disease To Take A Hike Summary: This document gives consumers advice on how to protect themselves from tick bites, which may result in lyme disease, during outdoor activity. Source: Office of Consumer Affairs, U.S. Food and Drug Administration http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=2123

·

Lyme Disease Research Efforts of NIAID Summary: NIAID is committed to research on Lyme borreliosis or Lyme disease. Basic and clinical research efforts funded by the this Institute encompass many different aspects of this disease. Source: National Institute of Allergy and Infectious Diseases, National Institutes of Health http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=231

·

Lyme Disease; The facts, The Challenge Summary: In the early 1970s, a mysterious clustering of arthritis occured among children in Lyme, Connecticut, and surrounding towns. Source: National Institute of Allergy and Infectious Diseases, National Institutes of Health http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=131

26 Lyme Disease

·

New Vaccine Targets for Lyme Disease Summary: The Food and Drug Administration licensed the first vaccine to help prevent Lyme disease -- LYMErix. This FDA Consumer article discusses the drug LYMErix and its usage. Source: U.S. Food and Drug Administration, U.S. Department of Health and Human Services http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=4484

·

Spotlight on Lyme Disease Summary: This page provides information about this tick-borne disease for consumers and health care professionals. Includes consumer information fact sheet and brochure and case studies. Source: National Center for Infectious Diseases, Centers for Disease Control and Prevention http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=2402

·

The Neurological Sequelae Of Lyme Disease Summary: A general overview of neurological sequelae of lyme disease that includes a description of the disorder, treatment, prognosis and research information. Source: National Institute of Neurological Disorders and Stroke, National Institutes of Health http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=3799

The NIH Search Utility After browsing the references listed at the beginning of this chapter, you may want to explore the NIH Search Utility. This allows you to search for documents on over 100 selected Web sites that comprise the NIH-WEBSPACE. Each of these servers is “crawled” and indexed on an ongoing basis. Your search will produce a list of various documents, all of which will relate in some way to Lyme disease. The drawbacks of this approach are that the information is not organized by theme and that the references are often a mix of information for professionals and patients. Nevertheless, a large number of the listed Web sites provide useful background information. We

Guidelines 27

can only recommend this route, therefore, for relatively rare or specific disorders, or when using highly targeted searches. To use the NIH search utility, visit the following Web page: http://search.nih.gov/index.html.

PEDBASE PEDBASE covers relatively rare disorders, limited mainly to pediatric conditions. PEDBASE was designed by Dr. Alan Gandy. To access the database, which is more oriented to researchers than patients, you can view the current list of conditions covered at the following Web site: http://www.icondata.com/health/pedbase/pedlynx.htm. Additional Web Sources A number of Web sites that often link to government sites are available to the public. These can also point you in the direction of essential information. The following is a representative sample: ·

AOL: http://search.aol.com/cat.adp?id=168&layer=&from=subcats

·

drkoop.comÒ: http://www.drkoop.com/conditions/ency/index.html

·

Family Village: http://www.familyvillage.wisc.edu/specific.htm

·

Google: http://directory.google.com/Top/Health/Conditions_and_Diseases/

·

Med Help International: http://www.medhelp.org/HealthTopics/A.html

·

Open Directory Project: http://dmoz.org/Health/Conditions_and_Diseases/

·

Yahoo.com: http://dir.yahoo.com/Health/Diseases_and_Conditions/

·

WebMDÒHealth: http://my.webmd.com/health_topics

Vocabulary Builder The material in this chapter may have contained a number of unfamiliar words. The following Vocabulary Builder introduces you to terms used in this chapter that have not been covered in the previous chapter: Amoxicillin:

A broad-spectrum semisynthetic antibiotic similar to

28 Lyme Disease

ampicillin except that its resistance to gastric acid permits higher serum levels with oral administration. [NIH] Antibiotic: A chemical substance produced by a microorganism which has the capacity, in dilute solutions, to inhibit the growth of or to kill other microorganisms. Antibiotics that are sufficiently nontoxic to the host are used as chemotherapeutic agents in the treatment of infectious diseases of man, animals and plants. [EU] Antibody: An immunoglobulin molecule that has a specific amino acid sequence by virtue of which it interacts only with the antigen that induced its synthesis in cells of the lymphoid series (especially plasma cells), or with antigen closely related to it. Antibodies are classified according to their ode of action as agglutinins, bacteriolysins, haemolysins, opsonins, precipitins, etc. [EU] Antigen: Any substance which is capable, under appropriate conditions, of inducing a specific immune response and of reacting with the products of that response, that is, with specific antibody or specifically sensitized Tlymphocytes, or both. Antigens may be soluble substances, such as toxins and foreign proteins, or particulate, such as bacteria and tissue cells; however, only the portion of the protein or polysaccharide molecule known as the antigenic determinant (q.v.) combines with antibody or a specific receptor on a lymphocyte. Abbreviated Ag. [EU] Antiseptic: A substance that inhibits the growth and development of microorganisms without necessarily killing them. [EU] Assay: Determination of the amount of a particular constituent of a mixture, or of the biological or pharmacological potency of a drug. [EU] Bacteria: Unicellular prokaryotic microorganisms which generally possess rigid cell walls, multiply by cell division, and exhibit three principal forms: round or coccal, rodlike or bacillary, and spiral or spirochetal. [NIH] Borrelia: A genus of gram-negative, anaerobic, helical bacteria, various species of which produce relapsing fever in man and other animals. [NIH] Cardiac: Pertaining to the heart. [EU] Ceftriaxone: Broad-spectrum cephalosporin antibiotic with a very long halflife and high penetrability to usually inaccessible infections, including those involving the meninges, eyes, inner ears, and urinary tract. [NIH] Cefuroxime: Broad-spectrum cephalosporin antibiotic resistant to betalactamase. It has been proposed for infections with gram-negative and grampositive organisms, gonorrhea, and haemophilus. [NIH] Chronic: Persisting over a long period of time. [EU] Confusion: Disturbed orientation in regard to time, place, or person, sometimes accompanied by disordered consciousness. [EU]

Guidelines 29

Conjunctivitis: Inflammation of the conjunctiva, generally consisting of conjunctival hyperaemia associated with a discharge. [EU] deet: A compound used as a topical insect repellent that may cause irritation to eyes and mucous membranes, but not to the skin. [NIH] Dizziness: An imprecise term which may refer to a sense of spatial disorientation, motion of the environment, or lightheadedness. [NIH] Doxycycline: A synthetic tetracycline derivative with a range of antimicrobial activity and mode of action similar to that of tetracycline, but more effective against many species. Animal studies suggest that it may cause less tooth staining than other tetracyclines. [NIH] Encephalomyelitis: A general term indicating inflammation of the brain and spinal cord, often used to indicate an infectious process, but also applicable to a variety of autoimmune and toxic-metabolic conditions. There is significant overlap regarding the usage of this term and encephalitis in the literature. [NIH] Encephalopathy: Any degenerative disease of the brain. [EU] Endemic: Present or usually prevalent in a population or geographical area at all times; said of a disease or agent. Called also endemial. [EU] Erythema: A name applied to redness of the skin produced by congestion of the capillaries, which may result from a variety of causes, the etiology or a specific type of lesion often being indicated by a modifying term. [EU] Erythromycin: A bacteriostatic antibiotic substance produced by Streptomyces erythreus. Erythromycin A is considered its major active component. In sensitive organisms, it inhibits protein synthesis by binding to 50S ribosomal subunits. This binding process inhibits peptidyl transferase activity and interferes with translocation of amino acids during translation and assembly of proteins. [NIH] Fatigue: The state of weariness following a period of exertion, mental or physical, characterized by a decreased capacity for work and reduced efficiency to respond to stimuli. [NIH] Gastrointestinal: Pertaining to or communicating with the stomach and intestine, as a gastrointestinal fistula. [EU] Hepatitis: Inflammation of the liver. [EU] Inflammation: A pathological process characterized by injury or destruction of tissues caused by a variety of cytologic and chemical reactions. It is usually manifested by typical signs of pain, heat, redness, swelling, and loss of function. [NIH] Lesion: Any pathological or traumatic discontinuity of tissue or loss of function of a part. [EU]

30 Lyme Disease

Lupus: A form of cutaneous tuberculosis. It is seen predominantly in women and typically involves the nasal, buccal, and conjunctival mucosa. [NIH]

Meningitis: Inflammation of the meninges. When it affects the dura mater, the disease is termed pachymeningitis; when the arachnoid and pia mater are involved, it is called leptomeningitis, or meningitis proper. [EU] Mononucleosis: The presence of an abnormally large number of mononuclear leucocytes (monocytes) in the blood. The term is often used alone to refer to infectious mononucleosis. [EU] Pacemaker: An object or substance that influences the rate at which a certain phenomenon occurs; often used alone to indicate the natural cardiac pacemaker or an artificial cardiac pacemaker. In biochemistry, a substance whose rate of reaction sets the pace for a series of interrelated reactions. [EU] Paralysis: Loss or impairment of motor function in a part due to lesion of the neural or muscular mechanism; also by analogy, impairment of sensory function (sensory paralysis). In addition to the types named below, paralysis is further distinguished as traumatic, syphilitic, toxic, etc., according to its cause; or as obturator, ulnar, etc., according to the nerve part, or muscle specially affected. [EU] Pediatrics: A medical specialty concerned with maintaining health and providing medical care to children from birth to adolescence. [NIH] Prenatal: Existing or occurring before birth, with reference to the fetus. [EU] Prevalence: The total number of cases of a given disease in a specified population at a designated time. It is differentiated from incidence, which refers to the number of new cases in the population at a given time. [NIH] Proteins: Polymers of amino acids linked by peptide bonds. The specific sequence of amino acids determines the shape and function of the protein. [NIH]

Rheumatoid: Resembling rheumatism. [EU] Sclerosis: A induration, or hardening; especially hardening of a part from inflammation and in diseases of the interstitial substance. The term is used chiefly for such a hardening of the nervous system due to hyperplasia of the connective tissue or to designate hardening of the blood vessels. [EU] Vaccine: A suspension of attenuated or killed microorganisms (bacteria, viruses, or rickettsiae), administered for the prevention, amelioration or treatment of infectious diseases. [EU] Viral: Pertaining to, caused by, or of the nature of virus. [EU] Wasps: Any of numerous winged hymenopterous insects of social as well as solitary habits and having formidable stings. [NIH]

Seeking Guidance 31

CHAPTER 2. SEEKING GUIDANCE Overview Some patients are comforted by the knowledge that a number of organizations dedicate their resources to helping people with Lyme disease. These associations can become invaluable sources of information and advice. Many associations offer aftercare support, financial assistance, and other important services. Furthermore, healthcare research has shown that support groups often help people to better cope with their conditions.9 In addition to support groups, your physician can be a valuable source of guidance and support. Therefore, finding a physician that can work with your unique situation is a very important aspect of your care. In this chapter, we direct you to resources that can help you find patient organizations and medical specialists. We begin by describing how to find associations and peer groups that can help you better understand and cope with Lyme disease. The chapter ends with a discussion on how to find a doctor that is right for you.

Associations and Lyme Disease As mentioned by the Agency for Healthcare Research and Quality, sometimes the emotional side of an illness can be as taxing as the physical side.10 You may have fears or feel overwhelmed by your situation. Everyone has different ways of dealing with disease or physical injury. Your attitude, your expectations, and how well you cope with your condition can all Churches, synagogues, and other houses of worship might also have groups that can offer you the social support you need. 10 This section has been adapted from http://www.ahcpr.gov/consumer/diaginf5.htm. 9

32 Lyme Disease

influence your well-being. This is true for both minor conditions and serious illnesses. For example, a study on female breast cancer survivors revealed that women who participated in support groups lived longer and experienced better quality of life when compared with women who did not participate. In the support group, women learned coping skills and had the opportunity to share their feelings with other women in the same situation. In addition to associations or groups that your doctor might recommend, we suggest that you consider the following list (if there is a fee for an association, you may want to check with your insurance provider to find out if the cost will be covered): ·

Lyme Disease Foundation Address: Lyme Disease Foundation 1 Financial Plaza 18th Floor, Hartford, CT 06103 Telephone: (860) 525-2000 Toll-free: (800) 886-5963 Fax: (860) 525-8425 Email: [email protected] Web Site: http://www.lyme.or Background: The Lyme Disease Foundation, Inc. (LDF) is a voluntary not-for-profit organization dedicated to finding the solutions to Lyme Disease and other tick-borne disorders. Established in 1988, the Lyme Disease Foundation funds research on Lyme Disease (LD), conducts international scientific conferences, and publishes a peer-reviewed scientific journal. It has successfully lobbied Congress for federal funds dedicated to Lyme Disease education and research. In addition, the Lyme Disease Foundation provides appropriate referrals, promotes patient advocacy, and supports the development of educational programs for affected individuals, family members, the medical and scientific communities, and the public. The Lyme Disease Foundation's many educational and support materials include a monthly self-help newsletter and a Lyme Disease Awareness Pack. A Lyme Disease Scientific Pack includes reprints of medical articles, scientific slide show information, and guidelines for establishing and conducting a self-help group. In addition, the Foundation distributes educational program materials for students, workplace and community education program materials, poster sets, brochures, and videotapes. Relevant area(s) of interest: Lyme Disease

Seeking Guidance 33

·

Lyme Disease Foundation (LDF) Address: e Disease Foundation (LDF). 1 Financial Plaza, 18th Floor, Hartford, CT 06103. (203) 525-2000 or (800) 886-5963; FAX (203) 525-8435. Telephone: 02 221 2456 Toll-free: (800) 876-5963 Background: This resource sheet lists publications, media aids, T- shirts, pamphlets, and public awareness bulletins that focus on Lyme disease. Topics include community education planning; general information about Lyme disease including diagnosis, treatment, and prevention; and Lyme disease information for children. Information is also included about the donation categories of the Lyme Disease Foundation (LDF).

·

Lyme Disease Resource Center Address: Lyme Disease Resource Center P.O. Box 1423, Ukiah, CA 95482 Telephone: (707) 468-8460 Toll-free: (800) 886-5963 Email: [email protected] Web Site: http://www.lymedisease.or Background: The Lyme Disease Resource Center is a voluntary not-forprofit education and communication center dedicated to supporting people affected by Lyme Disease, the public, physicians, and any others interested in this disorder. Established in 1990, the Lyme Disease Resource Center educates the public about Lyme Disease, its risks, and preventive measures. It provides a forum for physicians and other health care professionals to exchange ideas and information concerning symptoms, diagnosis, and treatments for Lyme Disease and functions as a communication center for individuals and groups who assist people with Lyme Disease. The Center also has a network of Lyme Disease support groups; engages in patient advocacy; and provides referrals to medical professionals or support groups. The Resource Center offers a variety of educational and support materials through its directory, audio visual aids, brochures, Spanish language brochure, and regular newsletter. Relevant area(s) of interest: Lyme Disease

·

American Lyme Disease Foundation, Inc Address: American Lyme Disease Foundation, Inc. Mill Pond Offices, 293 Route 100, Somers, NY 10589 Telephone: (914) 277-6970 Toll-free: (800) 876-5963 Fax: (914) 277-6974 Email: [email protected]

34 Lyme Disease

Web Site: http://www.aldf.co Background: The American Lyme Disease Foundation, Inc. (ALDF) is a nonprofit organization that is dedicated to advancing treatment, research, prevention, and public awareness of Lyme disease and other tickborne illnesses. Lyme disease is an infectious tick-transmitted disorder characterized by an early skin lesion and, subsequently, a growing red area on the skin (i.e., 'bull's eye' rash). In some cases, later symptoms may include joint, neurological, and/or heart problems. Established in 1990, the Foundation's work focuses on public and professional education and support of research. ALDF publishes a semi- annual newsletter and several brochures, including 'A Homeowner's Guide to the Ecology and Environmental Management of Lyme Disease,' 'A Quick Guide to Lyme Disease,' and a 'National Clinical Conference on Lyme Disease' supplement to the American Journal of Medicine (April 1995). Other educational materials include reports, videos, and a selection of audiovisual aids. The Foundation also provides a toll-free informational number and a physician referral service. Relevant area(s) of interest: Lyme Arthritis, Lyme Borreliosis, Lyme Disease ·

Arthritis Foundation of Australia Address: Arthritis Foundation of Australia 33 Bligh Street, Suite 902A, Sydney, New South Wales, 2000, Australia Telephone: 02 221 2456 Toll-free: (800) 876-5963 Fax: 02 232 2538 Web Site: http://www.span.com.au/arthritis Background: The Arthritis Foundation of Australia is a not-for-profit organization that is committed to providing care, education, and research for people affected by arthritis and other musculoskeletal disorders. The term arthritis, meaning inflammation of the joints, may encompass several conditions or disease states, such as osteoarthritis, rheumatoid arthritis, ankylosing spondylitis, gout, and others. The Arthritis Foundation of Australia, which was founded in 1949, is dedicated to promoting research into the causes, control, and cure of arthritis; supporting the professional education and training of physicians and allied health professionals; and enhancing community awareness of the needs of those affected by arthritis. The Foundation's additional objectives include representing people with arthritis nationally and internationally, serving as national secretariat of affiliated state and territory foundations, and assisting affiliated foundations in promoting self-management programs for people with arthritis. The Arthritis

Seeking Guidance 35

Foundation of Australia currently consists of eight state and territory affiliates. These affiliated foundations offer a wide range of services to their members and represent their interests to their own state and territory governments. Each affiliated foundation may also provide the addresses of a wide network of branches and self-help groups in each state. Relevant area(s) of interest: Lyme Disease ·

Back Pain Association of America, Inc Address: Back Pain Association of America, Inc. P.O. Box 135, Pasadena, MD 21123-0135 Telephone: (410) 255-3633 Toll-free: (800) 886-5963 Fax: (410) 255- 7338 Email: [email protected] Background: The Back Pain Association of America, Inc. (BPAA) is a national nonprofit organization dedicated to providing information and support to people who are affected by back and neck pain, their family members, friends, and health care professionals. Established in 1991 and consisting of nearly 4,000 members, BPAA offers programs and information to help affected individuals learn more about their spinal disorders and ways to cope with them. The organization also has a program to help individuals prevent back injuries. BPAA publishes a self-titled quarterly newsletter that helps readers stay informed of updated information and new forms of treatment. The organization's 'Friends Across America' networking program enables affected individuals to exchange information and support via telephone. BPAA also has a physician referral service as well as an information service for physicians who treat back and neck pain. In addition, the Association also promotes research and offers a variety of fact sheets including 'The Relationship Between Nerve Damage and Leg Pain,' 'Urinary Problems and Diseases of the Spine,' 'Arachnoiditis, Questions and Answers,' and 'A Guide to Abdominal and Stretching Exercises.'. Relevant area(s) of interest: Lyme Disease

·

American Association of Equine Practitioners Address: 4075 Iron Works Parkway Lexington, KY 40511 Telephone: (606) 233-0147; (800) 433-0177 Fax: (606) 233-1968 Web Site: http://www.aaep.org

36 Lyme Disease

Background: The American Association of Equine Practitioners (AAEP) exists to improve the health and welfare of horses, to further the professional development of its members, and to provide resources and leadership for the benefit of the equine industry. Each year the AAEP awards grant money to selected veterinarians and researchers with an eye toward understanding and reducing injuries and illnesses. Educational efforts are directed toward informing and supporting horse owners, trainers, event organizers and veterinarians regarding preventive medicine. The organization seeks to assure responsible training and the humane treatment of horses. Regarding horses in competition, the AAEP advocates ethical and humane conditions and handling which includes proper housing, transportation and nutrition. Publication(s): Legal Status of Horses Debated; Congenital Cleft Palate in Horses; Deep Digital Flexor Tenotomy as a Treatment for Chronic Laminitis; Lyme Disease in Horses; Overo Lethal White Syndrome; Vesicular Stomatitis. Relevant area(s) of interest: Continuing education; Equine care; Equine welfare; Horses; Veterinary medicine ·

Ball State University Department of Physiology and Health Science Public Health Entomology Laboratory Address: 2000 University Avenue Muncie, IN 47306-0510 Telephone: (765) 285-1504; (765) 285-5961 Fax: (765) 285-1624 Email: [email protected] Web Site: http://www.bsu.edu/csh/phs/phel.html Background: Funded in part by the State of Indiana, the Public Health Entomology Laboratory conducts research and provides public service in the field of medical and public health entomology. Primary interests of the Laboratory currently center on ticks and tick-borne diseases. The Laboratory's collection includes 10,000 specimens of ticks, 2,400 specimens of mosquitoes, 1,700 specimens of domestic flies of Indiana, and other insects of medical importance. The Library staff answers inquiries; provides advisory and current-awareness services; makes referrals to other sources of information; lends specimens; and permits onsite use of collections. Services are provided free to private citizens of Indiana and at cost to others. Publication(s): Mosquitoes of Indiana (pamphlet); Ticks and Disease in Indiana (pamphlet); scientific papers.

Seeking Guidance 37

Relevant area(s) of interest: Canine heartworm disease; Ehrlichiosis; Entomology; Insect vectors; Lyme Disease; Mosquitoes; Public health; Rocky Mountain spotted fever; Ticks ·

College of Veterinary Medicine Cornell University Diagnostic Laboratory, Department of Population Medicine and Diagnostic Service Address: Ithaca, NY 14851-5786 PO Box 5786 Upper Tower Road Telephone: (607) 253-3900 Fax: (607) 253-3943 Background: The Diagnostic Laboratory, Department of Population Medicine and Diagnostic Service a diagnostic laboratory; established in 1926, is an integral unit of New York State College of Veterinary Medicine at Cornell University, a statutory college of State University of New York. Sources of support: New York State Department of Agriculture and Markets, U.S. government, foundations and industry. The staff includes research and supporting professionals and technicians that research animal health, virology, toxicology, analytical chemistry, serology, parasitology, bacteriology, epidemiology, endocrinology, and clinical pathology. The laboratory provides support and diagnostic services for the New York State Department of Agriculture and Markets, practicing veterinarians, and animal industries. It also provides various research, agricultural, companion animals, exotic wildlife laboratory animals, and health-care delivery programs; and it conducts training programs, and extension service and field programs. Research findings are published in journal articles, books and reports. Publication(s): research findings are published in journal articles, books and reports General Notes Maintains anaerobic laboratory, mycoplasma laboratory, Lyme disease laboratory, mycobacteriosis laboratory; contagious equine metritis unit; bovine Mastitis laboratory, an analytical toxicology laboratory; nutritional laboratory; and comparative coagulation laboratory and a field service unit. Relevant area(s) of interest: Animal health; Diagnostic laboratory; Endocrinology; Epidemiology; Parasitology; Serology; Toxicology; Veterinary medicine; Virology

·

Environmental Health Los Angeles County Department of Health Services Vector Management Program Address: 2525 Corporate Place, Room 150 Monterey Park, CA 91754 Telephone: (323) 881-4046

38 Lyme Disease

Web Site: http://lapublichealth.org/eh/progs/consumer/vecman.htm Background: Rhe Vector Mangement Prograam consists of three units: Vector-Borne Disease Surveillance, Entomology and Vector Control. The historic objectives of the Vector-Borne Disease Surveillance Unit have always been the reduction of the risks of exposure to the pathogens of vector-borne disease through early detection and abatement of those factors which enhance the transmission of disease to humans. Routine surveillance of such diseases as sylvatic plague, murine typhus, Lyme borreliosis, the various hantaviruses and arenaviruses is conducted. The Entomology Unit performs the taxonomic duties which identify those arthropods responsible for transmission of the etiologic agents of disease and defines the biology, life history, and the complex transmission cycles which permit the transference of these diseases to the human population. Vector Control is responsible for rodent abatement activities and licensed animal keeper premises inspection and enforcement throughout Los Angeles County (except for the Mountain & Rural Program and District Environmental Services-Antelope Valley Districts). The unit continues to survey and manage the rodent populations within the Los Angeles metropolitan area as part of it's response to the historic Downtown Project. Relevant area(s) of interest: Disease vectors; Entomology; Pesticides; Vector control

Finding More Associations There are a number of directories that list additional medical associations that you may find useful. While not all of these directories will provide different information than what is listed above, by consulting all of them, you will have nearly exhausted all sources for patient associations. The National Health Information Center (NHIC) The National Health Information Center (NHIC) offers a free referral service to help people find organizations that provide information about Lyme disease. For more information, see the NHIC’s Web site at http://www.health.gov/NHIC/ or contact an information specialist by calling 1-800-336-4797.

Seeking Guidance 39

DIRLINE A comprehensive source of information on associations is the DIRLINE database maintained by the National Library of Medicine. The database comprises some 10,000 records of organizations, research centers, and government institutes and associations which primarily focus on health and biomedicine. DIRLINE is available via the Internet at the following Web site: http://dirline.nlm.nih.gov/. Simply type in “Lyme disease” (or a synonym) or the name of a topic, and the site will list information contained in the database on all relevant organizations.

The Combined Health Information Database Another comprehensive source of information on healthcare associations is the Combined Health Information Database. Using the “Detailed Search” option, you will need to limit your search to “Organizations” and “Lyme disease”. Type the following hyperlink into your Web browser: http://chid.nih.gov/detail/detail.html. To find associations, use the drop boxes at the bottom of the search page where “You may refine your search by.” For publication date, select “All Years.” Then, select your preferred language and the format option “Organization Resource Sheet.” By making these selections and typing in “Lyme disease” (or synonyms) into the “For these words:” box, you will only receive results on organizations dealing with Lyme disease. You should check back periodically with this database since it is updated every 3 months. The National Organization for Rare Disorders, Inc. The National Organization for Rare Disorders, Inc. has prepared a Web site that provides, at no charge, lists of associations organized by specific diseases. You can access this database at the following Web site: http://www.rarediseases.org/cgi-bin/nord/searchpage. Select the option called “Organizational Database (ODB)” and type “Lyme disease” (or a synonym) in the search box. Online Support Groups In addition to support groups, commercial Internet service providers offer forums and chat rooms for people with different illnesses and conditions. WebMDÒ, for example, offers such a service at their Web site:

40 Lyme Disease

http://boards.webmd.com/roundtable. These online self-help communities can help you connect with a network of people whose concerns are similar to yours. Online support groups are places where people can talk informally. If you read about a novel approach, consult with your doctor or other healthcare providers, as the treatments or discoveries you hear about may not be scientifically proven to be safe and effective. The following Internet sites may be of particular interest: ·

Lyme Disease Network www.lymenet.org

·

NOAH www.noah-health.org/english/support.html

·

Lyme Alliance www.lymealliance.org

Finding Doctors One of the most important aspects of your treatment will be the relationship between you and your doctor or specialist. All patients with Lyme disease must go through the process of selecting a physician. While this process will vary from person to person, the Agency for Healthcare Research and Quality makes a number of suggestions, including the following:11 ·

If you are in a managed care plan, check the plan's list of doctors first.

·

Ask doctors or other health professionals who work with doctors, such as hospital nurses, for referrals.

·

Call a hospital’s doctor referral service, but keep in mind that these services usually refer you to doctors on staff at that particular hospital. The services do not have information on the quality of care that these doctors provide.

·

Some local medical societies offer lists of member doctors. Again, these lists do not have information on the quality of care that these doctors provide.

Additional steps you can take to locate doctors include the following: ·

11

Check with the associations listed earlier in this chapter.

This section is adapted from the AHRQ: www.ahrq.gov/consumer/qntascii/qntdr.htm.

Seeking Guidance 41

·

Information on doctors in some states is available on the Internet at http://www.docboard.org. This Web site is run by “Administrators in Medicine,” a group of state medical board directors.

·

The American Board of Medical Specialties can tell you if your doctor is board certified. “Certified” means that the doctor has completed a training program in a specialty and has passed an exam, or “board,” to assess his or her knowledge, skills, and experience to provide quality patient care in that specialty. Primary care doctors may also be certified as specialists. The AMBS Web site is located at 12 http://www.abms.org/newsearch.asp. You can also contact the ABMS by phone at 1-866-ASK-ABMS.

·

You can call the American Medical Association (AMA) at 800-665-2882 for information on training, specialties, and board certification for many licensed doctors in the United States. This information also can be found in “Physician Select” at the AMA's Web site: http://www.amaassn.org/aps/amahg.htm.

If the previous sources did not meet your needs, you may want to log on to the Web site of the National Organization for Rare Disorders (NORD) at http://www.rarediseases.org/. NORD maintains a database of doctors with expertise in various rare diseases. The Metabolic Information Network (MIN), 800-945-2188, also maintains a database of physicians with expertise in various metabolic diseases.

Finding a Dermatologist To find a dermatologist in your area, you can use the “Find a Dermatologist” search engine provided by the American Academy of Dermatology. With a membership of 13,000, the American Academy of Dermatology represents virtually all practicing dermatologists in the United States and Canada. Type the following Web address into your browser to begin your search: http://www.aad.org/DermSearch/index.html. To search for dermatologists by U.S. state, enter your state into the search box and click “Search.” To search for dermatologists practicing outside the U.S., select “international members.” Enter your country and click the “Search” button.

While board certification is a good measure of a doctor's knowledge, it is possible to receive quality care from doctors who are not board certified. 12

42 Lyme Disease

Selecting Your Doctor13 When you have compiled a list of prospective doctors, call each of their offices. First, ask if the doctor accepts your health insurance plan and if he or she is taking new patients. If the doctor is not covered by your plan, ask yourself if you are prepared to pay the extra costs. The next step is to schedule a visit with your chosen physician. During the first visit you will have the opportunity to evaluate your doctor and to find out if you feel comfortable with him or her. Ask yourself, did the doctor: ·

Give me a chance to ask questions about Lyme disease?

·

Really listen to my questions?

·

Answer in terms I understood?

·

Show respect for me?

·

Ask me questions?

·

Make me feel comfortable?

·

Address the health problem(s) I came with?

·

Ask me my preferences about different kinds of treatments for Lyme disease?

·

Spend enough time with me?

Trust your instincts when deciding if the doctor is right for you. But remember, it might take time for the relationship to develop. It takes more than one visit for you and your doctor to get to know each other.

Working with Your Doctor14 Research has shown that patients who have good relationships with their doctors tend to be more satisfied with their care and have better results. Here are some tips to help you and your doctor become partners: ·

You know important things about your symptoms and your health history. Tell your doctor what you think he or she needs to know.

·

It is important to tell your doctor personal information, even if it makes you feel embarrassed or uncomfortable.

13 This

section has been adapted from the AHRQ: www.ahrq.gov/consumer/qntascii/qntdr.htm. 14 This section has been adapted from the AHRQ: www.ahrq.gov/consumer/qntascii/qntdr.htm.

Seeking Guidance 43

·

Bring a “health history” list with you (and keep it up to date).

·

Always bring any medications you are currently taking with you to the appointment, or you can bring a list of your medications including dosage and frequency information. Talk about any allergies or reactions you have had to your medications.

·

Tell your doctor about any natural or alternative medicines you are taking.

·

Bring other medical information, such as x-ray films, test results, and medical records.

·

Ask questions. If you don't, your doctor will assume that you understood everything that was said.

·

Write down your questions before your visit. List the most important ones first to make sure that they are addressed.

·

Consider bringing a friend with you to the appointment to help you ask questions. This person can also help you understand and/or remember the answers.

·

Ask your doctor to draw pictures if you think that this would help you understand.

·

Take notes. Some doctors do not mind if you bring a tape recorder to help you remember things, but always ask first.

·

Let your doctor know if you need more time. If there is not time that day, perhaps you can speak to a nurse or physician assistant on staff or schedule a telephone appointment.

·

Take information home. Ask for written instructions. Your doctor may also have brochures and audio and videotapes that can help you.

·

After leaving the doctor's office, take responsibility for your care. If you have questions, call. If your symptoms get worse or if you have problems with your medication, call. If you had tests and do not hear from your doctor, call for your test results. If your doctor recommended that you have certain tests, schedule an appointment to get them done. If your doctor said you should see an additional specialist, make an appointment.

By following these steps, you will enhance the relationship you will have with your physician.

44 Lyme Disease

Broader Health-Related Resources In addition to the references above, the NIH has set up guidance Web sites that can help patients find healthcare professionals. These include:15 ·

Caregivers: http://www.nlm.nih.gov/medlineplus/caregivers.html

·

Choosing a Doctor or Healthcare Service: http://www.nlm.nih.gov/medlineplus/choosingadoctororhealthcareserv ice.html

·

Hospitals and Health Facilities: http://www.nlm.nih.gov/medlineplus/healthfacilities.html

Vocabulary Builder The following vocabulary builder provides definitions of words used in this chapter that have not been defined in previous chapters: Anaerobic: 1. lacking molecular oxygen. 2. growing, living, or occurring in the absence of molecular oxygen; pertaining to an anaerobe. [EU] Coagulation: 1. the process of clot formation. 2. in colloid chemistry, the solidification of a sol into a gelatinous mass; an alteration of a disperse phase or of a dissolved solid which causes the separation of the system into a liquid phase and an insoluble mass called the clot or curd. Coagulation is usually irreversible. 3. in surgery, the disruption of tissue by physical means to form an amorphous residuum, as in electrocoagulation and photocoagulation. [EU] Dermatology: A medical specialty concerned with the skin, its structure, functions, diseases, and treatment. [NIH] Ehrlichiosis: A tick-borne disease characterized by fever, headache, myalgias, anorexia, and occasionally rash. In humans the disease is caused by ehrlichia chaffeensis, in dogs it is caused by E. canis, and in horses, E. equi. [NIH] Endocrinology: A subspecialty of internal medicine concerned with the metabolism, physiology, and disorders of the endocrine system. [NIH] Gout: Hereditary metabolic disorder characterized by recurrent acute arthritis, hyperuricemia and deposition of sodium urate in and around the joints, sometimes with formation of uric acid calculi. [NIH] You can access this information at: http://www.nlm.nih.gov/medlineplus/healthsystem.html.

15

Seeking Guidance 45

Mycoplasma: A genus of gram-negative, facultatively anaerobic bacteria bounded by a plasma membrane only. Its organisms are parasites and pathogens, found on the mucous membranes of humans, animals, and birds. [NIH]

Osteoarthritis: Noninflammatory degenerative joint disease occurring chiefly in older persons, characterized by degeneration of the articular cartilage, hypertrophy of bone at the margins, and changes in the synovial membrane. It is accompanied by pain and stiffness, particularly after prolonged activity. [EU] Pathogen: Any disease-producing microorganism. [EU] Plague: An acute infectious disease caused by yersinia pestis that affects humans, wild rodents, and their ectoparasites. This condition persists due to its firm entrenchment in sylvatic rodent-flea ecosystems throughout the world. Bubonic plague is the most common form. [NIH] Serology: The study of serum, especially of antigen-antibody reactions in vitro. [NIH] Spondylitis: Inflammation of the vertebrae. [EU] Stomatitis: Inflammation of the oral mucosa, due to local or systemic factors which may involve the buccal and labial mucosa, palate, tongue, floor of the mouth, and the gingivae. [EU] Toxicology: The science concerned with the detection, chemical composition, and pharmacologic action of toxic substances or poisons and the treatment and prevention of toxic manifestations. [NIH] Vesicular: 1. composed of or relating to small, saclike bodies. 2. pertaining to or made up of vesicles on the skin. [EU] Veterinarians: Individuals with a degree in veterinary medicine that provides them with training and qualifications to treat diseases and injuries of animals. [NIH]

Clinical Trials 47

CHAPTER 3. CLINICAL TRIALS AND LYME DISEASE Overview Very few medical conditions have a single treatment. The basic treatment guidelines that your physician has discussed with you, or those that you have found using the techniques discussed in Chapter 1, may provide you with all that you will require. For some patients, current treatments can be enhanced with new or innovative techniques currently under investigation. In this chapter, we will describe how clinical trials work and show you how to keep informed of trials concerning Lyme disease.

What Is a Clinical Trial?16 Clinical trials involve the participation of people in medical research. Most medical research begins with studies in test tubes and on animals. Treatments that show promise in these early studies may then be tried with people. The only sure way to find out whether a new treatment is safe, effective, and better than other treatments for Lyme disease is to try it on patients in a clinical trial.

The discussion in this chapter has been adapted from the NIH and the NEI: www.nei.nih.gov/netrials/ctivr.htm.

16

48 Lyme Disease

What Kinds of Clinical Trials Are There? Clinical trials are carried out in three phases: ·

Phase I. Researchers first conduct Phase I trials with small numbers of patients and healthy volunteers. If the new treatment is a medication, researchers also try to determine how much of it can be given safely.

·

Phase II. Researchers conduct Phase II trials in small numbers of patients to find out the effect of a new treatment on Lyme disease.

·

Phase III. Finally, researchers conduct Phase III trials to find out how new treatments for Lyme disease compare with standard treatments already being used. Phase III trials also help to determine if new treatments have any side effects. These trials--which may involve hundreds, perhaps thousands, of people--can also compare new treatments with no treatment. How Is a Clinical Trial Conducted?

Various organizations support clinical trials at medical centers, hospitals, universities, and doctors' offices across the United States. The “principal investigator” is the researcher in charge of the study at each facility participating in the clinical trial. Most clinical trial researchers are medical doctors, academic researchers, and specialists. The “clinic coordinator” knows all about how the study works and makes all the arrangements for your visits. All doctors and researchers who take part in the study on Lyme disease carefully follow a detailed treatment plan called a protocol. This plan fully explains how the doctors will treat you in the study. The “protocol” ensures that all patients are treated in the same way, no matter where they receive care. Clinical trials are controlled. This means that researchers compare the effects of the new treatment with those of the standard treatment. In some cases, when no standard treatment exists, the new treatment is compared with no treatment. Patients who receive the new treatment are in the treatment group. Patients who receive a standard treatment or no treatment are in the “control” group. In some clinical trials, patients in the treatment group get a new medication while those in the control group get a placebo. A placebo is a harmless substance, a “dummy” pill, that has no effect on Lyme disease. In other clinical trials, where a new surgery or device (not a medicine) is being tested, patients in the control group may receive a “sham treatment.” This

Clinical Trials 49

treatment, like a placebo, has no effect on Lyme disease and does not harm patients. Researchers assign patients “randomly” to the treatment or control group. This is like flipping a coin to decide which patients are in each group. If you choose to participate in a clinical trial, you will not know which group you will be appointed to. The chance of any patient getting the new treatment is about 50 percent. You cannot request to receive the new treatment instead of the placebo or sham treatment. Often, you will not know until the study is over whether you have been in the treatment group or the control group. This is called a “masked” study. In some trials, neither doctors nor patients know who is getting which treatment. This is called a “double masked” study. These types of trials help to ensure that the perceptions of the patients or doctors will not affect the study results. Natural History Studies Unlike clinical trials in which patient volunteers may receive new treatments, natural history studies provide important information to researchers on how Lyme disease develops over time. A natural history study follows patient volunteers to see how factors such as age, sex, race, or family history might make some people more or less at risk for Lyme disease. A natural history study may also tell researchers if diet, lifestyle, or occupation affects how a disease or disorder develops and progresses. Results from these studies provide information that helps answer questions such as: How fast will a disease or disorder usually progress? How bad will the condition become? Will treatment be needed? What Is Expected of Patients in a Clinical Trial? Not everyone can take part in a clinical trial for a specific disease or disorder. Each study enrolls patients with certain features or eligibility criteria. These criteria may include the type and stage of disease or disorder, as well as, the age and previous treatment history of the patient. You or your doctor can contact the sponsoring organization to find out more about specific clinical trials and their eligibility criteria. If you are interested in joining a clinical trial, your doctor must contact one of the trial's investigators and provide details about your diagnosis and medical history. If you participate in a clinical trial, you may be required to have a number of medical tests. You may also need to take medications and/or undergo

50 Lyme Disease

surgery. Depending upon the treatment and the examination procedure, you may be required to receive inpatient hospital care. Or, you may have to return to the medical facility for follow-up examinations. These exams help find out how well the treatment is working. Follow-up studies can take months or years. However, the success of the clinical trial often depends on learning what happens to patients over a long period of time. Only patients who continue to return for follow-up examinations can provide this important long-term information.

Recent Trials on Lyme Disease The National Institutes of Health and other organizations sponsor trials on various diseases and disorders. Because funding for research goes to the medical areas that show promising research opportunities, it is not possible for the NIH or others to sponsor clinical trials for every disease and disorder at all times. The following lists recent trials dedicated to Lyme disease.17 If the trial listed by the NIH is still recruiting, you may be eligible. If it is no longer recruiting or has been completed, then you can contact the sponsors to learn more about the study and, if published, the results. Further information on the trial is available at the Web site indicated. Please note that some trials may no longer be recruiting patients or are otherwise closed. Before contacting sponsors of a clinical trial, consult with your physician who can help you determine if you might benefit from participation. ·

Brain Imaging and Retreatment Study of Persistent Lyme Disease Condition(s): Lyme Disease; Lyme Neuroborreliosis Study Status: This study is currently recruiting patients. Sponsor(s): National Institute of Neurological Disorders and Stroke (NINDS) Purpose - Excerpt: The purpose of this study is to determine whether patients with persistent memory problems after Lyme disease benefit from an additional longer course of IV antibiotic therapy; to use modern brain imaging technology to determine whether the problem in the central nervous system is primarily one of poor blood flow or one of impaired nerve cell functioning; and to try to identify biological markers prior to treatment that will identify patients who are more or less likely to respond to the study treatment. Phase(s): Phase III Study Type: Interventional

17

These are listed at www.ClinicalTrials.gov.

Clinical Trials 51

Contact(s): Kathy Corbera, M.D. (212) 543-6508 [email protected] Tani Viera (212) 543-6510 [email protected]; New York; Columbia Presbyterian Medical Center, New York, New York, 10032, United States; Recruiting; Tani Viera 212-543-6510 [email protected]; Brian Fallon, M.D., Principal Investigator. Study chairs or principal investigators: Brian Fallon, M.D., Principal Investigator; Columbia University, College of Physicians and Surgeons, Lyme Disease Research Program Web Site: http://clinicaltrials.gov/ct/gui/c/w2r/show/NCT00037479 ·

Evaluation of Lyme Disease: Immunological Characteristics

Clinical,

Microbiological

and

Condition(s): Chronic Disease; Healthy; Lyme Arthritis; Lyme Disease; Multiple Sclerosis Study Status: This study is currently recruiting patients. Sponsor(s): National Institute of Allergy and Infectious Diseases (NIAID) Purpose - Excerpt: This study will determine whether patients who have been infected with the Lyme bacteria, Borrelia burgdorferi, and treated with antibiotics still have the bacteria alive inside them and whether it is causing their symptoms. The information from this study may serve as a basis for developing stringent diagnostic criteria for Lyme disease and the establishment of future treatment trials. Individuals in the following categories may be eligible for this study: chronic Lyme disease; chronic Lyme arthritis; seropositive control (are infected with the bacteria that causes Lyme disease but do not have disease symptoms); recovered control (have been sick with Lyme disease but were treated successfully and are currently well); control with multiple sclerosis (patients with multiple sclerosis); and healthy volunteers. Patients in the chronic Lyme disease category must be between 13 and 65 years of age; all others must be between 18 and 65 years of age. Candidates will be screened with blood and urine tests. Participants will have a physical examination and the following tests: Blood tests - Includes HLA-typing, a genetic test of immune system markers; Leukapheresis - Collection of large numbers of white blood cells Whole blood is collected through a needle in an arm vein. The blood circulates through a machine that separates it into its components. The white cells are removed and the rest of the blood is returned to the body, either through the same needle used to draw the blood or through another needle in the other arm. (Alternatively, patients will 100 cc (about 7 tablespoons) of blood drawn.); Lumbar puncture (spinal tap) - Collection of cerebrospinal fluid (CSF, fluid that bathes the brain and spinal cord). A local anesthetic is administered and a needle is inserted in the space between the bones in the lower back where the

52 Lyme Disease

cerebrospinal fluid circulates below the spinal cord. A small amount of fluid is collected through the needle; Magnetic resonance imaging (MRI) of the brain - Imaging of the brain using a strong magnetic field and radio waves instead of X-rays. During the scan, the patient lies on a table in a narrow cylinder containing a magnetic field. He or she can speak with a staff member via an intercom at all times during the procedure; Neuropsychologic testing; Some participants may also have a hearing test and urine collection. Participants whose test results are positive for Borrelia burgdorferi will be followed at NIH at intervals of 3 to 6 months until it is determined whether there is infection. Those who are infected will be offered treatment with the antibiotic ceftriaxone. Following treatment, patients will return to the NIH Clinical Center for follow-up visits 1 week after treatment and again at 3, 6 and 12 months. The lumbar puncture, hearing examination, blood and urine tests will be repeated at these visits to evaluate the response to treatment, and the leukapheresis will be repeated for research purposes. Patients whose MRI was abnormal during therapy will have a repeat MRI at the 3-month, 6-month and 1-year visits. All participants with chronic Lyme disease, chronic Lyme arthritis, seropositive controls and recovered controls may be reevaluated at intervals of 6 to 12 months. Study Type: Observational Contact(s): Maryland; National Institute of Allergy and Infectious Diseases (NIAID), 9000 Rockville Pike Bethesda, Maryland, 20892, United States; Recruiting; Patient Recruitment and Public Liaison Office 1-800411-1222 [email protected]; TTY 1-866-411-1010 Web Site: http://clinicaltrials.gov/ct/gui/c/w2r/show/NCT00001539 ·

Evaluation, Treatment, and Follow-up of Patients with Lyme Disease Condition(s): Lyme Disease Study Status: This study is currently recruiting patients. Sponsor(s): National Institute of Allergy and Infectious Diseases (NIAID) Purpose - Excerpt: This study is designed to establish a population of patients with Lyme disease for evaluation, treatment and follow-up to learn more about the infection. Patients with active Lyme disease may be eligible for this study. Participants will have a medical history and physical examination and diagnostic evaluations as appropriate to their individual condition. Laboratory tests may include routing blood and urine tests, X-rays, or other imaging studies, body fluid or tissue cultures, skin biopsy and tests for allergic or immune responses. Treatment will include only medications approved by the Food and Drug Administration, given according to accepted dose schedules and ways of

Clinical Trials 53

taking the medicines. All diagnostic tests and treatments will be according to standard medical practice for the disease. No experimental procedures will be offered under this protocol. Patients will be followed as needed for evaluation and treatment of their condition. In general, they will be asked to return at the end of therapy, then 3, 6 and 12 months later, and then every 6 to 12 months. More frequent visits may be required or less frequent visits may be allowed, depending on the individual's condition. Participants may be asked to undergo the following additional procedures for research purposes: - Extra blood draws to study Lyme disease and other inflammatory conditions. Blood will be drawn from arm veins. The total amount drawn during any 6week period will not exceed 450 cc (30 tablespoons) for adults and 7 cc (1/2 tablespoon) per kilogram (2.2 pounds) of body weight for children under 18 years of age. - Leukapheresis to collect large numbers of white blood cells. Whole blood is collected through a needle in an arm vein, similar to donating blood. The blood circulates through a machine that separates it into its components, and the white cells are removed. The rest of the blood is returned to the body through the same needle. Only adults 18 years of age and older will be asked to undergo leukapheresis. Study Type: Observational Contact(s): Maryland; National Institute of Allergy and Infectious Diseases (NIAID), 9000 Rockville Pike Bethesda, Maryland, 20892, United States; Recruiting; Patient Recruitment and Public Liaison Office 1-800411-1222 [email protected]; TTY 1-866-411-1010 Web Site: http://clinicaltrials.gov/ct/gui/c/w2r/show/NCT00028080 ·

A Randomized, Double-Blind, Placebo-Controlled, Multicenter Trial of the Safety and Efficacy of Ceftriaxone and Doxycycline in the Treatment of Patients with Seronegative Chronic Lyme Disease Condition(s): Lyme Disease Study Status: This study is no longer recruiting patients. Sponsor(s): National Institute of Allergy and Infectious Diseases (NIAID) Purpose - Excerpt: Lyme disease is the most common tick-borne disease in the United States. It is caused by the spirochete Borrelia burgdorferi. It may exist in an acute and chronic form. The purpose of this study is to determine the safety and effectiveness, in seronegative patients, of intensive antibiotic treatment in eliminating symptoms of Chronic Lyme Disease (CLD). Lyme disease is the most common tick-borne disease in the United States. It is caused by the spirochete Borrelia burgdorferi. It may exist in a chronic form and be the result of: 1) persistent infection by B. burgdorferi; 2) damage caused by the original infectious process; or 3)

54 Lyme Disease

the presence of co-infection with another organism transmitted by Ixodes ticks. Phase(s): Phase III Study Type: Observational Contact(s): Massachusetts; Mark Klempner, Boston, Massachusetts, 02111, United States Web Site: http://clinicaltrials.gov/ct/gui/c/w2r/show/NCT00000938 ·

Lyme Disease Prevention Program Condition(s): Lyme Disease; Tick-Borne Diseases Study Status: This study is no longer recruiting patients. Sponsor(s): National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS); Centers for Disease Control and Prevention Purpose - Excerpt: This is a large study of an educational program on Lyme disease prevention for passengers on ferry boats going to Nantucket Island during the period from Memorial Day until Labor Day. Some boats provide passengers with the experimental program and the other boats provide a "control" program that the researchers can compare to the experimental program. The experimental program uses live performances by entertainers to teach people about Lyme disease prevention, and also uses additional printed materials. People on the control boats receive education on injury prevention and road safety while bicycling, rollerblading, and using mopeds. The main result we will look for is Lyme disease identified by a followup survey and confirmed by reviewing medical records. We will also ask some people to take part in a smaller study of behavior change. In this study, we will ask people to complete forms on self-efficacy (a person's belief in his or her ability to reach a certain goal), their plans to take preventive steps, and actual prevention behaviors. We also ask participants who report doctor visits or illness to provide confirmation of their use of health services. Phase(s): Phase III Study Type: Interventional Contact(s): Charlotte Phillips, M.P.H. 617-732-5083 [email protected]; Massachusetts; Steamship Authority ferry boats to Nantucket Island, Hyannis, Massachusetts, 02601, United States. Study chairs or principal investigators: Matthew H. Liang, M.D., M.P.H., Principal Investigator; Brigham & Women's Hospital Web Site: http://clinicaltrials.gov/ct/gui/c/w2r/show/NCT00000432

Clinical Trials 55

·

Study and Treatment of Post Lyme Disease (STOP-LD) Condition(s): Lyme Disease Study Status: This study is no longer recruiting patients. Sponsor(s): National Institute of Allergy and Infectious Diseases (NIAID) Purpose - Excerpt: The purpose of this study is to see how well antibiotics work in reducing chronic fatigue symptoms, such as tiredness, in patients that were treated for Lyme Disease. Fatigue is a common symptom of Lyme Disease. When fatigue does not improve after treatment, patients are considered to have Post Lyme Syndrome (PLS). The chronic fatigue seen in these patients appears to be related to the initial infection which causes Lyme Disease. It is believed, but not proven, that treatment with antibiotics may be effective in relieving chronic fatigue in PLS patients. Phase(s): Phase III Study Type: Observational Contact(s): New York; Lauren Krupp, Stony Brook, New York, 117948121, United States Web Site: http://clinicaltrials.gov/ct/gui/c/w2r/show/NCT00000937

·

A Randomized, Double-Blind, Placebo-Controlled, Multicenter Trial of the Safety and Efficacy of Ceftriaxone and Doxycycline in the Treatment of Patients with Seropositive Chronic Lyme Disease Condition(s): Lyme Disease Study Status: This study is completed. Sponsor(s): National Institute of Allergy and Infectious Diseases (NIAID) Purpose - Excerpt: Lyme disease is the most common tick-borne disease in the United States. It is caused by the spirochete Borrelia burgdorferi. It may exist in a chronic form and be the result of: 1) active infection by B. burgdorferi; 2) damage caused by the original infectious process; or 3) the presence of co-infection with another organism transmitted by Ixodes ticks. The purpose of this study is to determine the safety and effectiveness, for seropositive patients, of intensive antibiotic treatment in eliminating symptoms of Chronic Lyme Disease (CLD). Phase(s): Phase III Study Type: Observational Contact(s): Massachusetts; Mark Klempner, Boston, Massachusetts, 02111, United States Web Site: http://clinicaltrials.gov/ct/gui/c/w2r/show/NCT00001101

56 Lyme Disease

Benefits and Risks18 What Are the Benefits of Participating in a Clinical Trial? If you are interested in a clinical trial, it is important to realize that your participation can bring many benefits to you and society at large: ·

A new treatment could be more effective than the current treatment for Lyme disease. Although only half of the participants in a clinical trial receive the experimental treatment, if the new treatment is proved to be more effective and safer than the current treatment, then those patients who did not receive the new treatment during the clinical trial may be among the first to benefit from it when the study is over.

·

If the treatment is effective, then it may improve health or prevent diseases or disorders.

·

Clinical trial patients receive the highest quality of medical care. Experts watch them closely during the study and may continue to follow them after the study is over.

·

People who take part in trials contribute to scientific discoveries that may help other people with Lyme disease. In cases where certain diseases or disorders run in families, your participation may lead to better care or prevention for your family members. The Informed Consent

Once you agree to take part in a clinical trial, you will be asked to sign an “informed consent.” This document explains a clinical trial's risks and benefits, the researcher’s expectations of you, and your rights as a patient.

What Are the Risks? Clinical trials may involve risks as well as benefits. Whether or not a new treatment will work cannot be known ahead of time. There is always a chance that a new treatment may not work better than a standard treatment. There is also the possibility that it may be harmful. The treatment you

This section has been adapted from ClinicalTrials.gov, a service of the National Institutes of Health: http://www.clinicaltrials.gov/ct/gui/c/a1r/info/whatis?JServSessionIdzone_ct=9jmun6f2 91. 18

Clinical Trials 57

receive may cause side effects that are serious enough to require medical attention.

How Is Patient Safety Protected? Clinical trials can raise fears of the unknown. Understanding the safeguards that protect patients can ease some of these fears. Before a clinical trial begins, researchers must get approval from their hospital's Institutional Review Board (IRB), an advisory group that makes sure a clinical trial is designed to protect patient safety. During a clinical trial, doctors will closely watch you to see if the treatment is working and if you are experiencing any side effects. All the results are carefully recorded and reviewed. In many cases, experts from the Data and Safety Monitoring Committee carefully monitor each clinical trial and can recommend that a study be stopped at any time. You will only be asked to take part in a clinical trial as a volunteer giving informed consent. What Are a Patient's Rights in a Clinical Trial? If you are eligible for a clinical trial, you will be given information to help you decide whether or not you want to participate. As a patient, you have the right to: ·

Information on all known risks and benefits of the treatments in the study.

·

Know how the researchers plan to carry out the study, for how long, and where.

·

Know what is expected of you.

·

Know any costs involved for you or your insurance provider.

·

Know before any of your medical or personal information is shared with other researchers involved in the clinical trial.

·

Talk openly with doctors and ask any questions.

After you join a clinical trial, you have the right to: ·

Leave the study at any time. Participation is strictly voluntary. However, you should not enroll if you do not plan to complete the study.

·

Receive any new information about the new treatment.

·

Continue to ask questions and get answers.

58 Lyme Disease

·

Maintain your privacy. Your name will not appear in any reports based on the study.

·

Know whether you participated in the treatment group or the control group (once the study has been completed).

What about Costs? In some clinical trials, the research facility pays for treatment costs and other associated expenses. You or your insurance provider may have to pay for costs that are considered standard care. These things may include inpatient hospital care, laboratory and other tests, and medical procedures. You also may need to pay for travel between your home and the clinic. You should find out about costs before committing to participation in the trial. If you have health insurance, find out exactly what it will cover. If you don't have health insurance, or if your insurance company will not cover your costs, talk to the clinic staff about other options for covering the cost of your care. What Should You Ask before Deciding to Join a Clinical Trial? Questions you should ask when thinking about joining a clinical trial include the following: ·

What is the purpose of the clinical trial?

·

What are the standard treatments for Lyme disease? Why do researchers think the new treatment may be better? What is likely to happen to me with or without the new treatment?

·

What tests and treatments will I need? Will I need surgery? Medication? Hospitalization?

·

How long will the treatment last? How often will I have to come back for follow-up exams?

·

What are the treatment's possible benefits to my condition? What are the short- and long-term risks? What are the possible side effects?

·

Will the treatment be uncomfortable? Will it make me feel sick? If so, for how long?

·

How will my health be monitored?

·

Where will I need to go for the clinical trial? How will I get there?

·

How much will it cost to be in the study? What costs are covered by the study? How much will my health insurance cover?

Clinical Trials 59

·

Will I be able to see my own doctor? Who will be in charge of my care?

·

Will taking part in the study affect my daily life? Do I have time to participate?

·

How do I feel about taking part in a clinical trial? Are there family members or friends who may benefit from my contributions to new medical knowledge?

Keeping Current on Clinical Trials Various government agencies maintain databases on trials. The U.S. National Institutes of Health, through the National Library of Medicine, has developed ClinicalTrials.gov to provide patients, family members, and physicians with current information about clinical research across the broadest number of diseases and conditions. The site was launched in February 2000 and currently contains approximately 5,700 clinical studies in over 59,000 locations worldwide, with most studies being conducted in the United States. ClinicalTrials.gov receives about 2 million hits per month and hosts approximately 5,400 visitors daily. To access this database, simply go to their Web site (www.clinicaltrials.gov) and search by “Lyme disease” (or synonyms). While ClinicalTrials.gov is the most comprehensive listing of NIH-supported clinical trials available, not all trials are in the database. The database is updated regularly, so clinical trials are continually being added. The following is a list of specialty databases affiliated with the National Institutes of Health that offer additional information on trials: ·

For clinical studies at the Warren Grant Magnuson Clinical Center located in Bethesda, Maryland, visit their Web site: http://clinicalstudies.info.nih.gov/

·

For clinical studies conducted at the Bayview Campus in Baltimore, Maryland, visit their Web site: http://www.jhbmc.jhu.edu/studies/index.html

General References The following references describe clinical trials and experimental medical research. They have been selected to ensure that they are likely to be available from your local or online bookseller or university medical library.

60 Lyme Disease

These references are usually written for healthcare professionals, so you may consider consulting with a librarian or bookseller who might recommend a particular reference. The following includes some of the most readily available references (sorted alphabetically by title; hyperlinks provide rankings, information and reviews at Amazon.com): ·

A Guide to Patient Recruitment : Today's Best Practices & Proven Strategies by Diana L. Anderson; Paperback - 350 pages (2001), CenterWatch, Inc.; ISBN: 1930624115; http://www.amazon.com/exec/obidos/ASIN/1930624115/icongroupinterna

·

A Step-By-Step Guide to Clinical Trials by Marilyn Mulay, R.N., M.S., OCN; Spiral-bound - 143 pages Spiral edition (2001), Jones & Bartlett Pub; ISBN: 0763715697; http://www.amazon.com/exec/obidos/ASIN/0763715697/icongroupinterna

·

The CenterWatch Directory of Drugs in Clinical Trials by CenterWatch; Paperback - 656 pages (2000), CenterWatch, Inc.; ISBN: 0967302935; http://www.amazon.com/exec/obidos/ASIN/0967302935/icongroupinterna

·

The Complete Guide to Informed Consent in Clinical Trials by Terry Hartnett (Editor); Paperback - 164 pages (2000), PharmSource Information Services, Inc.; ISBN: 0970153309; http://www.amazon.com/exec/obidos/ASIN/0970153309/icongroupinterna

·

Dictionary for Clinical Trials by Simon Day; Paperback - 228 pages (1999), John Wiley & Sons; ISBN: 0471985961; http://www.amazon.com/exec/obidos/ASIN/0471985961/icongroupinterna

·

Extending Medicare Reimbursement in Clinical Trials by Institute of Medicine Staff (Editor), et al; Paperback 1st edition (2000), National Academy Press; ISBN: 0309068886; http://www.amazon.com/exec/obidos/ASIN/0309068886/icongroupinterna

·

Handbook of Clinical Trials by Marcus Flather (Editor); Paperback (2001), Remedica Pub Ltd; ISBN: 1901346293; http://www.amazon.com/exec/obidos/ASIN/1901346293/icongroupinterna

Vocabulary Builder The following vocabulary builder gives definitions of words used in this chapter that have not been defined in previous chapters: Biopsy: The removal and examination, usually microscopic, of tissue from the living body, performed to establish precise diagnosis. [EU] Cerebrospinal: Pertaining to the brain and spinal cord. [EU]

Clinical Trials 61

Leukapheresis: The preparation of leukocyte concentrates with the return of red cells and leukocyte-poor plasma to the donor. [NIH] Lumbar: Pertaining to the loins, the part of the back between the thorax and the pelvis. [EU] Microbiological: Pertaining to microbiology : the science that deals with microorganisms, including algae, bacteria, fungi, protozoa and viruses. [EU] Physiologic: Normal; not pathologic; characteristic of or conforming to the normal functioning or state of the body or a tissue or organ; physiological. [EU]

Retreatment: The therapy of the same disease in a patient, with the same agent or procedure repeated after initial treatment, or with an additional or alternate measure or follow-up. It does not include therapy which requires more than one administration of a therapeutic agent or regimen. Retreatment is often used with reference to a different modality when the original one was inadequate, harmful, or unsuccessful. [NIH]

63

PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL

ABOUT PART II In Part II, we introduce you to additional resources and advanced research on Lyme disease. All too often, patients who conduct their own research are overwhelmed by the difficulty in finding and organizing information. The purpose of the following chapters is to provide you an organized and structured format to help you find additional information resources on Lyme disease. In Part II, as in Part I, our objective is not to interpret the latest advances on Lyme disease or render an opinion. Rather, our goal is to give you access to original research and to increase your awareness of sources you may not have already considered. In this way, you will come across the advanced materials often referred to in pamphlets, books, or other general works. Once again, some of this material is technical in nature, so consultation with a professional familiar with Lyme disease is suggested.

Studies 65

CHAPTER 4. STUDIES ON LYME DISEASE Overview Every year, academic studies are published on Lyme disease or related conditions. Broadly speaking, there are two types of studies. The first are peer reviewed. Generally, the content of these studies has been reviewed by scientists or physicians. Peer-reviewed studies are typically published in scientific journals and are usually available at medical libraries. The second type of studies is non-peer reviewed. These works include summary articles that do not use or report scientific results. These often appear in the popular press, newsletters, or similar periodicals. In this chapter, we will show you how to locate peer-reviewed references and studies on Lyme disease. We will begin by discussing research that has been summarized and is free to view by the public via the Internet. We then show you how to generate a bibliography on Lyme disease and teach you how to keep current on new studies as they are published or undertaken by the scientific community.

The Combined Health Information Database The Combined Health Information Database summarizes studies across numerous federal agencies. To limit your investigation to research studies and Lyme disease, you will need to use the advanced search options. First, go to http://chid.nih.gov/index.html. From there, select the “Detailed Search” option (or go directly to that page with the following hyperlink: http://chid.nih.gov/detail/detail.html). The trick in extracting studies is found in the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer, and the

66 Lyme Disease

format option “Journal Article.” At the top of the search form, select the number of records you would like to see (we recommend 100) and check the box to display “whole records.” We recommend that you type in “Lyme disease” (or synonyms) into the “For these words:” box. Consider using the option “anywhere in record” to make your search as broad as possible. If you want to limit the search to only a particular field, such as the title of the journal, then select this option in the “Search in these fields” drop box. The following is a sample of what you can expect from this type of search: ·

Arthritis 101: Lyme Disease Source: Arthritis Today. 14(2): 34-35. March-April 2000. Summary: This journal article provides the general public and people who have arthritis with information on Lyme disease. This tick borne disease causes symptoms that can mimic those of mononucleosis, meningitis, multiple sclerosis, rheumatoid arthritis, and other diseases. The early localized stage of Lyme disease occurs 7 to 10 days after infection and is characterized by an expanding red rash and viral type symptoms. The early disseminated stage occurs after several weeks or months of infection. Additional symptoms, including nervous system problems, may appear. The late stage of the disease can occur from months to years after the initial infection. In this stage, arthritis pain and swelling may occur in a few large joints. Lyme disease is usually diagnosed from the signs and symptoms in the earlier stages. A blood test may help confirm the diagnosis. Treatment involves taking antibiotics. Although two vaccines have been developed, people should still take precautions such as clearing brush from a yard, wearing long sleeved shirts and long pants tucked into socks when walking through woods or high grasses, checking exposed skin regularly, and removing a tick gently. 2 figures.

·

Taking a Bite Out of Lyme Disease: Preventive Vaccine Is Now Available Source: Consultant. 39(2): 527-529. February 1999. Summary: This journal article provides health professionals with information on a vaccine for Lyme disease, the most common tick borne illness in the United States. Lyme disease is endemic to the Northeast, upper Midwest, and Pacific coastal States. It is a multisystem, multistage disorder typically presenting as a red papule that expands to an enlarging patch of erythema migrans. Flu like symptoms often accompany the rash. If the disease is left untreated neurologic and myocardial abnormalities may develop within weeks or months of infection. Arthritis occurs in approximately half of those with untreated

Studies 67

Lyme disease. The first vaccine, LYMErix, was recently approved for marketing by the Food and Drug Administration. The vaccine is formulated from a lipoprotein, OspA, that stimulates the production of antibodies against Borrelia burgdorferi in vaccinated patients. A 20 month randomized, multicenter, placebo controlled trial of the vaccine indicated a 78 percent efficacy rate against definite Lyme disease and a 100 percent effectiveness rate against asymptomatic infection. The article provides information on dosage and reactions, identifies candidates for vaccination, and outlines precautions people should take to prevent tick bites. 1 figure, 1 table, and 5 references. ·

New Vaccine Targets Lyme Disease: New Hope for Diminishing the 'Great Masquerader' Source: FDA Consumer. 33(3): 12-17. May-June 1999. Summary: This journal article provides the general public with information on a vaccine for Lyme disease, a bacterial infection transmitted by tick bites. In December 1998, the Food and Drug Administration licensed the first vaccine, known as LYMErix, to help prevent Lyme disease. The vaccine stimulates the human immune system to produce antibodies against Borrelia burgdorferi, but unlike the process with typical vaccines that fight bacteria in a person's body, the antibodies from a vaccinated person enter the tick and kill the bacteria there. The vaccine is not 100 percent effective, so people still need to take preventive measures against infection. The article explains how ticks become infected with the Lyme disease bacteria and how the disease is transmited to humans. Symptoms, including a skin rash called erythema migrans and flu-like symptoms, are identified. The article also discusses the diagnosis of Lyme disease using an enzyme-linked immunosorbent assay technique and the PreVue B. burgdorferi Antibody Detection Assay, treatment with antibiotics, and prevention. In addition, the article provides guidelines on removing and disposing of ticks and protecting household pets from Lyme disease. 5 figures.

·

Questions and Answers About the Lyme Disease Vaccine Source: Patient Care. 33(11): 209. June 15, 1999. Summary: This patient information sheet uses a question and answer format to provide the public with information about the Lyme disease vaccine, which has been approved only for people over 15 years old. The vaccine is suggested for those who are at high or moderate risk of getting Lyme disease. Factors placing people at high risk include living in a county where Lyme disease is common, having deer on residential property, and working or spending leisure time outdoors on a frequent

68 Lyme Disease

or prolonged basis where Lyme disease is common. The vaccine should be given in three doses. The first dose should be followed by a second one a month later. The third dose should be administered 12 months after the second one. The vaccine is very effective, but it may not protect everyone. Therefore, people who receive the vaccine should still take precautions to protect themselves against tick bites. ·

Musculoskeletal and Neurologic Outcomes in Patients With Previously Treated Lyme Disease Source: Annals of Internal Medicine. 131(12): 919-926. December 21, 1999. Summary: This journal article provides health professionals with information on a population based, retrospective cohort study that determined clinical and functional outcomes in persons who were treated for Lyme disease in the late 1980s. The study population consisted of 186 Nantucket Island, MA, residents who had a history of Lyme disease and 167 residents who did not. Measurements included a standardized medical history, a physical examination, a functional status measure, a mood state assessment, neurocognitive tests, and a serologic examination. The study found that the prevalence of Lyme disease among adults on Nantucket Island was estimated to be 14.3 percent. In multivariate analyses, persons with previous Lyme disease had more joint pain, more symptoms of memory impairment, and poorer functional status due to pain than persons without previous Lyme disease. However, on physical examination, case patients and controls did not differ in musculoskeletal abnormalities, neurologic abnormalities, or neurocognitive performance. Persons with previous Lyme disease who had persistent symptoms after receiving treatment were more likely than those who had completely recovered to have had fever, headache, photosensitivity, or neck stiffness during their acute illness; however, the performance of the two groups on neurocognitive tests did not significantly differ. The article concludes that, although musculoskeletal and neurocognitive outcomes seem to be favorable among persons with previous Lyme disease, long term impairment of functional status can occur. 1 figure, 5 tables, and 39 references. (AA-M).

·

Lyme Disease Update: Current Approach to Early, Disseminated, and Late Disease Source: Postgraduate Medicine. 103(5): 51-54,57-59,63-64,70. May 1998. Summary: This journal article provides health professionals with information on the clinical manifestations, and diagnosis of Lyme disease, as well as its treatment. This disease, which is a tick-borne multisystem infectious syndrome, is the most frequently reported vector-

Studies 69

borne illness in the United States. The causative organism, Borrelia burgdorferi, is a flagellated spirochete transmitted from small-mammal reservoirs to humans through bites from infected ixodid ticks. The symptoms of Lyme disease are categorized according to organ system involvement and duration of infection. The hallmark of early localized Lyme disease is an expanding erythematous patch or ring appearing within 30 days after the infected tick inoculates the skin with the spirochete. A minority of patients with the erythematous patch also report various systemic symptoms. Supportive laboratory data can help confirm the diagnosis. Serologic testing is the only routinely available laboratory diagnostic aid for Lyme disease. After a period of localized skin infection at the site of the tick bite, infection may spread hematogenously to various target organs. Disseminated Lyme disease occurs 1 to 4 months after an infected tick bite. Features may include cutaneous, rheumatic, neurologic, and cardiac manifestations. Serologic testing should be used only in patients who are considered to be at risk epidemiologically and have clinical features truly suggestive of disseminated Lyme disease. Late Lyme disease is used for manifestations occurring more than 4 months after disease onset. Features include persistent skin inflammation, encephalopathy, and chronic inflammatory arthritis. All stages of Lyme disease are treated with an antibiotic regimen. Antibiotic therapy should be tailored to the extent of the disease and should be limited to 4 weeks. The article includes a discussion of issues in disease management. 3 figures, 2 tables, and 29 references. ·

Guidelines for Serologic Testing of Lyme Disease Source: Journal of Musculoskeletal Medicine. 15(8): 19-25. August 1998. Summary: This journal article provides health professionals with information on laboratory tests available to help the clinician confirm the diagnosis of Lyme disease. A variety of laboratory tests detect specific antibodies to the spirochete Borrelia burgdorferi. Incorrect use of serologic tests for Lyme disease often results in overdiagnosis and overtreatment. Serologic testing is indicated only when the patient demonstrates clinical findings suggestive of Lyme disease, and it is most likely to be useful when done at 6 weeks after the tick bite. It is not indicated when the patient has erythema migrans or nonspecific symptoms. Determining the pretest probability of Lyme disease requires consideration of various factors, including geography, time of year, and previous tick bite. The most accurate and widely available and used are the enzyme-linked immunosorbent assay (ELISA) and the immunoblot (Western blot) analysis. The ELISA test can measure immunoglobulin (Ig) G or IgM antibodies either individually or combined. Several weeks after

70 Lyme Disease

infection, specificity increases but sensitivity declines. There are currently no standard criteria for a positive test result. The Western blot is more sensitive than ELISA for detecting the presence of antibodies, but may be less sensitive for establishing the diagnosis and is used to corroborate positive or equivocal ELISA results. A positive result on the Western blot confirms infection and is an indication for treatment; a negative result greatly decreases the probability of Lyme disease. The immunoblot assay identifies specific antibodies against different Borrelia proteins. Clinical indications for serologic testing include history of tick bite more than 4 to 6 weeks earlier and neurologic, cardiac, and musculoskeletal symptoms. Physicians need to consider other explanations for patient symptoms before considering a diagnosis of Lyme disease. 1 figure, 3 tables, and 18 references. (AA-M). ·

Recognition and Management of Lyme Disease Source: American Family Physician. 56(2):427,430-436. August 1997. Contact: American Academy of Family Physicians. 11400 Tomahawk Creek Parkway, Leawood, KS 66211-2672. (800) 274-2237 or (913) 9066000. E-mail: [email protected]. Website: www.aafp.org. Summary: This journal article for health professionals provides guidelines for recognizing and managing Lyme disease. This multisystem disorder, which is the most common tick-borne illness in the United States, has an annual incidence of 0.5 percent in endemic areas. It most commonly occurs in the Northeast and upper Midwest, in areas that encourage and harbor the deer tick. The tick transmits an infection of the spirochete Borrelia burgdorferi that typically manifests as a localized skin lesion, erythema migrans. Rarely, Lyme disease manifests as localized arthritis, heart block, or disease of the nervous system. Lyme disease is a clinical diagnosis, and laboratory tests should only be used to clarify diagnostic issues. The current standard for laboratory diagnosis includes a two-step approach using an initial immunoassay with a confirmatory Western blot. Treatment includes 10 to 21 days of oral doxycycline in nonpregnant adults or a similar course of amoxicillin in children or pregnant women. Overdiagnosis and overtreatment of Lyme disease have become common. 37 references, 5 figures, and 3 tables. (AA-M).

·

Lyme Disease in Children in Southeastern Connecticut Source: New England Journal of Medicine. 335(17):1270-1274; October 24, 1996. Summary: This journal article for health professionals describes a prospective, longitudinal, community-based cohort study of 201 children

Studies 71

with Lyme disease in an area of southeastern Connecticut in which the disease is highly endemic. The researchers obtained clinical and demographic information and performed serial antibody tests and followup evaluations. Results indicate that the initial clinical manifestations of Lyme disease were a single erythema migrans lesion in 66 percent of the patients, multiple erythema migrans lesions in 23 percent, arthritis in 6 percent, facial-nerve palsy in 3 percent, aseptic meningitis in 2 percent, and carditis in 0.5 percent. At presentation, 37 percent of the patients with a single erythema migrans lesion and 89 percent of those with multiple erythema migrans lesions had antibodies against Borrelia burgdoferi. All but 3 of the 201 patients were treated for 2 to 4 weeks with conventional antimicrobial therapy, which was administered orally to 96 percent of the patients. All had prompt clinical responses. After 4 weeks, 94 percent were completely asymptomatic. At followup, none of the patients had evidence of either chronic or recurrent Lyme disease. Six patients subsequently had a new episode of erythema migrans. The article concludes that the prognosis for children with early Lyme disease who are treated with appropriate antimicrobial therapy is excellent. An appendix lists members of the Pediatric Lyme Disease Study Group. 29 references and 2 tables. (AA-M). ·

Diagnosis of Lyme Disease Source: Hospital Practice. p. 35-36. August 15, 1996. Summary: This letter to the editor responds to Leonard H. Sigal's editorial entitled Lyme Disease Over-diagnosis: Causes and Cure, which focused on the overdiagnosis of Lyme disease within the nonpsychiatric context, and as a result of this overdiagnosis (diagnosis by exclusion), subjecting patients to long-term and unnecessary antibiotic therapy. The letter's author indicates that there is a closed system of thinking that contributes to diagnostic error and that there is actually more underdiagnosis than overdiagnosis. Such underdiagnosis is laying the ground work for a large scale epidemic of neuropsychiatric Lyme disease in the future. Dr. Sigal responds that while diagnosis by exclusion may be imprecise, and that he does not known of any of the psychiatric signs and symptoms described by the letter's author, he suggests the only way to settle the questions raised is to perform scientific studies to demonstrate that the form of Lyme disease described in the author's letter does actually exist. 8 references.

·

Lyme Disease: 10 Questions Physicians Often Ask Source: Consultant. 36(10):2252-2254,2260-2263; October 1996.

72 Lyme Disease

Summary: This journal article for health professionals answers 10 questions that physicians often ask about Lyme disease. This condition, which has been reported in 48 States, is fairly easy to cure, and serious complications rarely develop when the disease is treated promptly. Questions address issues related to the diagnosis and treatment of Lyme disease. Diagnosis is complicated by the fact that the pathognomonic skin lesion, erythema migrans, is absent in up to 40 percent of infected persons. Also roughly half of patients with erythema migrans are seronegative at the time of presentation. All specimens submitted for testing should be evaluated in two steps: if results of ELISA or IFA testing are negative, no further testing is needed, but if results are borderline or positive, Western blot analysis is needed to confirm the diagnosis. Prophylactic therapy with amoxicillin or doxycycline should be considered if a tick has been attached more than 24 hours and the patient was exposed in an area with an infectivity rate of more than 30 percent. In addition, other questions deal with the risk, diagnosis, and prevention of reinfection; the treatment of a pregnant woman who has Lyme disease; the management of patients who continue to be symptomatic after being treated for Lyme disease; the reduction of the risk of Lyme disease; and the progress made in the development of a vaccine. 19 references, 1 figure, and 1 table. (AA-M). ·

Identifying and Managing Lyme Disease in Children Source: Journal of Musculoskeletal Medicine. 13(7):28-33; July 1996. Summary: This journal article for health professionals offers guidelines for identifying and managing pediatric Lyme disease and its complications. The evaluation of a child with new onset of joint swelling for the possibility of Lyme disease should include consideration of the epidemiology of the disease, the history other than joint involvement, the type of joint disease, and laboratory data. The fact the Lyme disease is much more common in certain geographic areas affects the level of clinical suspicion when a child presents with typical complaints. The only pathognomonic feature is the erythematous ring-shaped skin lesion that appears 1 to 3 weeks following tick attachment and can expand to a large diameter within hours. An acute flu-like illness develops 1 to 4 weeks after the tick bite. The most common late complication is join inflammation. Inflammation may be classically episodic and monarticular, which may cause a delay is diagnosis. One third of children present with an acute arthritis. Various laboratory tests may useful in evaluating patients, including serologic tests and synovial fluid analysis. Treatment options include oral antibiotic agents for manifestations of uncomplicated disease. 24 references, 1 figure, and 2 tables. (AA- M).

Studies 73

·

Differentiation of Orofacial Pain Related to Lyme Disease from Other Dental and Facial Pain Disorders Source: Dental Clinics of North America. 41(2): 243-258. April 1997. Contact: Available from W.B. Saunders. Periodicals Fulfillment, 6277 Sea Harbor Drive, Orlando, FL 32887-4800. (800) 654-2452. Website: www.wbsaunders.com. Summary: This article discusses ways to differentiate orofacial pain related to Lyme disease from other dental and facial pain disorders. The author notes that the facial pain of Lyme disease may simulate dental pathology, temporomandibular joint or masticatory muscle pain, headache, and neuropathic disorders. The author discusses the cause and diagnosis of odontogenic pain, normal and pathologic function of the temporomandibular joints, myofascial trigger points, and pain referral patterns. A screening examination of the odontogenic and masticatory structures as well as a summary of headache disorders is provided. These conditions are compared with their presentation in a patient with Lyme disease to facilitate the diagnostic process. 11 tables. 32 references.

·

Now You Can Prevent Lyme Disease Source: Patient Care. 33(11): 180-182,187-188,191-192,194,197-200,205. June 15, 1999. Summary: This journal article provides health professionals with information on a LYMErix, the newly approved Lyme disease vaccine. The vaccine is given in three doses over 1 year to achieve maximum efficacy. The initial dose should be followed by a second dose 1 month later and the third dose 12 months after the second. Although the duration of protection following the third dose has not yet been established, it is likely that boosters will be needed at 1 to 2 year intervals. Unresolved concerns about the vaccine include its safety and efficacy in children and the elderly, its link to Lyme arthritis, and its effect on laboratory tests used to detect Lyme disease. Physicians need to ask patients to assess their risk for Lyme disease based on their place of residence; the terrain of their property; and their occupational, recreational, and leisure activities. Despite progress made on the vaccination front, detecting Lyme disease often remains a challenge. Early recognition is important because progression can lead to serious complications. Early localized infection is characterized by erythema migrans, which develops about 1 to 4 weeks after a tick bite. Early disseminated infection may develop within weeks to months in untreated patients. Late persistent infection may develop months to years after the initial infection. To determine whether serologic testing is warranted,

74 Lyme Disease

physicians should first assess the pretest probability of disease and the predictive value of the serologic test results. For most patients, antibiotic therapy is an effective cure, and when used early, it prevents progression to more serious complications. 5 figures, 4 tables, and 7 references. ·

Musculoskeletal Manifestations of Lyme Disease Source: Rheumatic Disease Clinics of North America. 24(2): 323-351. May 1998. Summary: This journal article provides health professionals with information on the musculoskeletal manifestations of Lyme arthritis. The article begins by briefly reviewing the history of Lyme disease in the United States and Europe and the evolution of investigators' sense of Lyme disease in the United States and Europe. This is followed by a discussion of the ecology and epidemiology of Lyme disease, the life cycle of ixodid ticks, and the types of proteins expressed after Borrelia burgdorferi is transmitted into the mammalian host. The article then presents the features of early localized, early disseminated, and late Lyme disease. The hallmark of early localized Lyme disease is an expanding erythematous patch or ring appearing within roughly a week after an infected tick inoculates the skin with the spirochete. After a period of localized skin infection at the site of the bite, infection may spread hematogenously to various target organs. The symptoms of disseminated Lyme disease include cardiac and neurologic manifestations. The features of late Lyme disease are encephalopathy, axonal polyneuropathy, and leukoencephalitis. The musculoskeletal features of untreated Lyme disease are arthralgia, intermittent episodes of arthritis, or chronic arthritis. Other topics include B. burgdorferi as a cause of reactive arthritis, the radiographic features of Lyme arthritis, its occurrence in children, and the development of fibromyalgia in patients with Lyme disease. The article describes some of the techniques used in laboratory evaluation, including the enzyme-linked immunosorbent assay, the Western blot analysis, polymerase chain reaction, and the borreliacidal antibody assay. Tests of unproven value in Lyme disease include urinary antigen detection, T cell proliferative responses, and autoantibody testing. The article presents caveats on the use of testing in Lyme disease, discusses treatment with antibiotics, and comments on prevention strategies. In addition, the article identifies factors in the immunopathogenesis of Lyme disease, examines the potential role of autoimmunity in the pathogenesis of Lyme neurologic disease, and discusses psychopathogenetic factors that may have a role in chronic Lyme disease. The article concludes with recommendations on diagnosis and treatment. 4 tables and 141 references.

Studies 75

Federally-Funded Research on Lyme Disease The U.S. Government supports a variety of research studies relating to Lyme disease and associated conditions. These studies are tracked by the Office of Extramural Research at the National Institutes of Health.19 CRISP (Computerized Retrieval of Information on Scientific Projects) is a searchable database of federally-funded biomedical research projects conducted at universities, hospitals, and other institutions. Visit the CRISP Web site at http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket. You can perform targeted searches by various criteria including geography, date, as well as topics related to Lyme disease and related conditions. For most of the studies, the agencies reporting into CRISP provide summaries or abstracts. As opposed to clinical trial research using patients, many federally-funded studies use animals or simulated models to explore Lyme disease and related conditions. In some cases, therefore, it may be difficult to understand how some basic or fundamental research could eventually translate into medical practice. The following sample is typical of the type of information found when searching the CRISP database for Lyme disease: ·

Project Title: Chronic Lyme Arthritis--Is This Autoimmunity? Principal Investigator & Institution: Huber, Brigitte T.; Professor; Pathology; Tufts University Boston 136 Harrison Ave Boston, Ma 02111 Timing: Fiscal Year 2000; Project Start 0-SEP-1998; Project End 9-SEP-2001 Summary: Lyme disease is a multi-faceted illness, initiated upon infection with the spirochete borrelia burgdorferi (Bb). One manifestation of the disease is arthritis, which can result in treatment-resistant chronic arthritis in a small subset of exposed individuals. The prevalence of HLA.DR4 related alleles in these patients is an indication of an autoimmune process. They have explored the role of T helper cells in the development of Lyme arthritis, and the investigators hypothesize that patients with these particular HLA.DR alleles are at risk of developing chronic disease as a result of a vigorous inflammatory Th response to Bb. The interferon gamma production by these activated Thl cells, as well as the presence of Bb, itself leads to upregulation of MHC class II, LFA-1 and ICAM-1 expression predisposing for an autoimmune process by

19 Healthcare projects are funded by the National Institutes of Health (NIH), Substance Abuse and Mental Health Services (SAMHSA), Health Resources and Services Administration (HRSA), Food and Drug Administration (FDA), Centers for Disease Control and Prevention (CDCP), Agency for Healthcare Research and Quality (AHRQ), and Office of Assistant Secretary of Health (OASH).

76 Lyme Disease

molecular mimicry. Based upon homology to a highly antigenic epitope of outer surface protein A (Osp A) of Bb, the applicants have identified a candidate autoantigen, hLFA-1. The aim of this application is to verify this hypothesis by creating in vitro and in vivo test systems. I. The functional similarity between the homologous epitopes and Osp A Bb and human LFA-1, but not mouse LFA-1, will be analyzed by three in vitro approaches: (a) T cell hybridomas will be generated from DR4 transgenic mice after immunization with Osp A, and the resulting clones will be tested for reactivity to human LFA-1. If double-reactive hybridomas are identified, the antigenic epitopes will be mapped; (b) synovial fluid T cells from chronic Lyme patients will be transformed and tested at the single-cell level for reactivity to Osp A and human LFA-1; (c) Osp A will be tested for binding to ICAM-1. Competition assays will be performed between Osp A and LFA-1. II. Murine models for treatmentresistant chronic Lyme arthritis will be generated by two approaches; (a) LFA-1/DR4 double transgenic mice on an MHC class II-/-background will be created and tested for the development of chronic Lyme arthritis after exposure to Bb. This is based on the observation that mouse LFA-1 does not express the Osp A cross-reactive epitope; (b) Hu-SCID-beige mice will be generated with PBMCs from patients with chronic Lyme arthritis. These mice will contain the non-immune lymphocytes of the susceptible genotype, allowing a detailed analysis of the acquisition of chronic Lyme arthritis after injection with Bb. These investigations, they propose, should provide a vigorous test of their working hypothesis, and will lead to new insights into the mechanism of treatment-resistant chronic Lyme arthritis. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·

Project Title: Incomplete Recovery Following Lyme Disease Principal Investigator & Institution: Shadick, Nancy A.; ; Brigham and Women's Hospital 75 Francis St Boston, Ma 02115 Timing: Fiscal Year 2000; Project Start 1-AUG-1997; Project End 0-JUN2002 Summary: The candidate is an Instructor in Medicine in the Division of Rheumatology/Immunology and a clinical investigator in the Multipurpose Arthritis and Musculoskeletal Diseases Center at the Brigham and Women's Hospital, who coordinates the Nantucket Island Lyme disease cohort study. Her goal is to become a clinical researcher, focusing on the epidemiology, prognosis and management of Lyme disease. The applicant's sponsor, Dr. Matthew Liang, Director, Multipurpose Arthritis and Musculoskeletal Diseases Center and Professor of Medicine at Harvard Medical School, has acted as her

Studies 77

mentor and will continue to do so for this proposal. This project, combined with course work and regular participation in conferences, will prepare her for a career as an independent clinical investigator. The Division of Rheumatology/Immunology and the Multipurpose Arthritis and Musculoskeletal Diseases Center have faculty with expertise in epidemiology and health services research including survey techniques, forms design, statistical programming and analyses. Computer facilities in the Center's Biometry Core are available to the candidate. The resources of the Brigham and Women's Hospital allow the opportunity to collaborate with members of other departments and to participate in graduate school courses at the Harvard School of Public Health. The overall goal of the present study is to improve our understanding of the long term outcomes of Lyme disease. Specific aims include l) determination of the chronicity of musculoskeletal and neurologic impairment in a well characterized population-based cohort of individuals with prior Lyme disease and 2) development of a predictive model of chronic Lyme disease with particular attention to potentially modifiable biological and psychosocial risk factors in order to define an intervention strategy to reduce chronic Lyme disease. A retrospective cohort of 349 Lyme subjects and community controls on Nantucket Island, MA, will receive a standardized and blinded physical examination, symptom review, health status measure, psychometric test battery, and serologic analysis at a three year follow-up interval to assess outcomes. Baseline clinical and psychosocial variables will be evaluated as risk factors for objective and subjective morbidity. This study will help develop better treatment and management guidelines for people with Lyme disease. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·

Project Title: Neurobehavioral Syndromes of Chronic Lyme Disease Principal Investigator & Institution: Krupp, Lauren B.; ; State University New York Stony Brook Stony Brook, Ny 11794 Timing: Fiscal Year 2000 Summary: Chronic neurologic Lyme disease has emerged as the major health care issue concerning B. burgdorferi infection, the most rapidly growing vector borne infection in the United States. Encephalopathy is the core syndrome of chronic neurologic Lyme disease. The primary goal of this project is to characterize Lyme encephalopathy. Chronic Lyme patients (n=100) will be assessed on neurobehavioral measures, as compared to controls drawn from the community (n=100) and CSF measures, as compared to an Other Neurologic Disease (OND) group (n=50). We will test specific hypotheses related to the major clinical

78 Lyme Disease

features and pathogenesis of chronic neurologic Lyme disease. A longitudinal design over an 18 month period will allow the course and key risk factors of Lyme encephalopathy to be defined. Specific Aim 1. To define the neurobehavioral and psychological sequelae of chronic Lyme disease Specific Aim 2. To determine the pathogenesis for neurobehavioral deficits in chronic Lyme disease Specific Aim 3. To identify the clinical and laboratory factors which predict health outcome in chronic Lyme disease Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·

Project Title: Neurologic Aspects of Lyme Disease in North America Principal Investigator & Institution: Coyle, Patricia K.; Associate Professor; Neurology; State University New York Stony Brook Stony Brook, Ny 11794 Timing: Fiscal Year 2000; Project Start 1-APR-1997; Project End 1-MAR2002 Summary: Lyme disease is a major emerging infection in the United States, and has become a significant health issue in terms of public awareness, health care costs, and medical practice standards. Neurologic involvement is now recognized as the major morbidity of Lyme disease, but has not been studied in a systematic fashion. This Program Project has assembled an interdisciplinary team of investigators to study neurologic Lyme disease. They will utilize the clinical and laboratory resources of the Lyme Disease Center at Stony Brook. All components of this Program Project are linked by shared methodologies, conceptual frameworks, and common Cores. The three Clinical Projects will provide materials for the Pathogenesis Project: Project 1 will look at the role of host factors (the T cell response) and organism factors (neurotropism, antigenic variation). Project 2 will determine the frequency, correlates, and outcome of central nervous system invasion in early Lyme disease. Project 3 will characterize the neurobehavioral syndromes of chronic Lyme disease. Project 4 will study neurologic Lyme disease in children. The supporting Cores are: A) an Administrative Center Core; B) a Data Management Core; C) a Central Laboratory Core; D) a Neuropsychology Core. The primary scientific goals of this Program Project are 1) to identify and characterize prospectively the neurologic, neuropsychologic, and psychosocial manifestations of Lyme disease in children and adults; and 2) to identify pathogenetic mechanisms involved in neurologic Lyme disease. The secondary goals are 3) to characterize associated cerebrospinal fluid changes; and 4) to identify risk factors for poor outcome. This Program Project will support a structured interdisciplinary effort to study the neurologic aspects of Lyme disease. It will provide

Studies 79

information to guide development of rational and cost-effective public health policy for this important infection. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·

Project Title: Neurologic Involvement in Pediatric Lyme Disease Principal Investigator & Institution: Belman, Anita L.; ; State University New York Stony Brook Stony Brook, Ny 11794 Timing: Fiscal Year 2000 Summary: Lyme disease, due to the tick borne spirochete Borrelia burgdorferI (Bb), is a major emerging infection. It was originally recognized in children, and children continue to have a high rate of infection. Major issues concerning neurologic aspects of the disease in children and adolescents remain unresolved. Failure to understand the full spectrum of neurologic features has led to health care practices which may be both costly and ineffective. The objective of this proposal is to characterize the neurologic, cognitive, and behavioral aspects of pediatric disseminated Lyme disease. Three groups of children will be evaluated in a prospective longitudinal 18 month study. Case Group 1 [N=50] will meet Centers for Disease Control and Prevention (CDC) surveillance criteria for neurologic Lyme disease. Case Group 2 [N=50] will meet the CDC surveillance criteria for extraneural Lyme disease [Lyme arthritis, carditis or multifocal erythema migrans. Control Group 3 [N=50] will be composed of an age- sex- and IQ- matched group of healthy Bb seronegative controls. All three groups will have comprehensive neurologic, neuropsychologic, behavioral. and psychosocial evaluations at entry. Subjects with neurologic involvement will have cerebrospinal fluid [CSF] studies. Disseminated Lyme disease subjects will receive currently recommended antibiotic treatment. All three groups will be followed prospectively with full re-evaluation at 18 months. SPECIFIC AIM 1: To delineate the neurologic and CSF features of disseminated Lyme disease in children. Hypothesis 1: Neurologic involvement is common in pediatric disseminated Lyme disease. SPECIFIC AIM 2: To delineate the behavioral and neurocognitive features of disseminated Lyme disease in children. Hypothesis 2: Behavioral changes [dysphoria, irritability, fatigue] and cognitive problems [deficits of attention and memory] are frequent in children with neurologic Lyme disease. These problems will have remitted by 18 month follow up. SPECIFIC AIM 3: To identify specific risk factors for persistent post treatment behavioral and neurocognitive complaints. Hypothesis 3: Persistent post-treatment complaints at the 18 month follow-up are more common in children with psychosomatic problems, and those with parents who reinforce illnessrelated behavior. This project will: (A) establish the relative frequency,

80 Lyme Disease

severity, and progression of neurologic and neurobehavioral disturbances associated with pediatric Lyme disease; (B) provide needed data to optimize diagnosis, evaluation, and management of neurologic Lyme syndromes in children. thereby helping to standardize care and reduce medical costs; (C) increase our understanding of underlying pathophysiologic mechanisms of this disorder. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·

Project Title: Nucleic Acid-Based Diagnostic Probes for Lyme Disease Principal Investigator & Institution: Schwartz, Ira S.; Professor; Biochem and Molecular Biology; New York Medical College Elmwood Hall Valhalla, Ny 10595 Timing: Fiscal Year 2000; Project Start 0-SEP-1991; Project End 0-JUN2005 Summary: (Adapted from the Applicant's Abstract): Lyme disease is the most common vector-borne disease in the United States. It is caused by the bite of a tick infected with the spirochete, Borrelia burgdorferi, the etiologic agent of the disease. Evaluation of the potential for development of disease from a tick bite is complicated by incomplete knowledge of the diversity of spirochete genotypes in nature and their pathogenic capacities. Furthermore, current laboratory diagnosis rests on a number of serologic tests of varying degrees of sensitivity and reliability, which limits the rapid and specific diagnosis of the disease immediately following a tick bite. During the previous grant period significant progress was made in the molecular typing of B. burgdorferi clinical isolates. In particular, the investigators observed an unequal distribution of genotypes between skin and blood; a particular genotype which is readily cultured from skin was significantly less frequently found in blood. This suggests that the capacity for hematogenous dissemination may vary among different B. burgdorferi genotypes. In addition, progress in the application of a polymerase chain reaction (PCR)-based assay for detection of B. burgdorferi in skin, blood, and synovial fluid was achieved. The investigators propose to extend these findings by pursuing the following specific aims: l) They hypothesize that there is significant genotypic diversity among B. burgdorferi in nature, with the greatest diversity in wildlife hosts and the least in human patients. Molecular typing of B. burgdorferi in ticks and various wildlife hosts will be carried out by PCR-RFLP analysis and DNA sequencing and the number and distribution of genotypes in reservoir hosts, ticks and patients will be compared. 2) Dissemination of different RFLP types will be tested directly in a murine model. I. scapularis colonies infected with single, clonal B. burgdorferi genotypes will be established and potential

Studies 81

phenotypic variation will be explored with regard to dissemination, acquisition and transmission. 3) The potential of PCR as a modality for diagnosis of early Lyme disease and Lyme arthritis, particularly in patient blood and synovial fluid specimens, will be further explored. A number of variables will be systematically evaluated with the goal of designing a PCR-based approach which can be effectively employed for reliable diagnosis of Lyme disease. The proposed experiments will provide for a more complete understanding of the infection dynamics of B. burgdorferi. This will contribute to a better appreciation of the risk of contracting Lyme disease from a tick bite. In addition, a reliable PCRbased method for detection of B. burgdorferi in patient blood and synovial should improve accurate diagnosis of early Lyme disease and Lyme arthritis. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·

Project Title: Pathogenesis of Neurologic Lyme Disease Principal Investigator & Institution: Luft, Benjamin J.; ; State University New York Stony Brook Stony Brook, Ny 11794 Timing: Fiscal Year 2000 Summary: The goal of this project is to identify Borrelial and host-specific factors involved in the invasion of and persistence within the central nervous system (CNS). This will be done by identifying those strains of B. burgdorferi which are neurotropic; by determining strain antigenic variation associated with neurotropism and persistence; by defining the relationship between neurotropism ,antigenic variability, and early and late neurologic Lyme syndromes; and by examining the role of host T-cell responses in dissemination and perpetuation-of disease. This project will use erythema migrans skin biopsy, cerebrospinal fluid, and blood samples from early Lyme disease patients (Project 2), and cerebrospinal fluid and blood samples from late Lyme disease patients (Project 3). Techniques to be used include polymerase chain reaction (PCR), singlestranded conformational polymorphism and cytokine assays. The following specific aims will be addressed. Specific Aim 1: To identify neurotropic strains of B. burgdorferi. Specific Aim 2: To test the hypothesis that T-cell cytokine production (Th1 vs Th2) in response to B. burgdorferi, correlates with clinical outcome. The following predictions will be tested: A. Early Lyme patients show a predominant Th2 T-cell response, while late/chronic Lyme patients show a predominant Th1 response. B. Early Lyme patients with a predominant Th1 T-cell response are more likely to develop chronic sequelae than early Lyme disease patients with a predominant Th2 response. This will be tested by correlating cytokine production of early Lyme disease patients with

82 Lyme Disease

clinical outcome at 18 months. C. Early Lyme patients with neurologic symptoms have a predominant Th1 response, while early Lyme patients with a single lesion of erythema migrans and no systemic symptoms have a predominant Th2 response. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·

Project Title: T Cell Specificity and Function in Lyme Synovitis Principal Investigator & Institution: Vincent, Michael S.; ; Brigham and Women's Hospital 75 Francis St Boston, Ma 02115 Timing: Fiscal Year 2000; Project Start 0-SEP-1996; Project End 1-AUG2001 Summary: A research career development plan is proposed encompassing laboratory investigations on the role of gamma/delta T cells in Lyme synovitis and a curriculum in immunology, autoimmunity, and the conduct of responsible, clinically relevant research. The candidate will train at the University of Vermont College of Medicine and is a Board-eligible internist with a Ph.D in pharmacology who will be an independent investigator focusing the majority of his efforts on basic research in autoimmunity upon completion of the program. The laboratory project will investigate chronic Lyme arthritis, which presents a model human T lymphocyte infiltrative disease resembling rheumatoid arthritis clinicopathologically, but providing the advantage that the inciting agent, Borrelia burgdorferi, is known. The T lymphocyte infiltrates in Lyme synovitis and rheumatoid arthritis include a striking abundance of gamma/delta T lymphocytes, but the role of this subset in the synovial inflammation remains unclear. Previous work from our laboratory suggests that Lyme synovial gamma/delta T cells proliferate in response to Borrelia burgdorferi and manifest cytolytic activity toward CD4+ T lymphocytes in a Fas-dependent manner. The hypothesis of the research proposal is that Lyme synovial y& cells react to components of B. burgdorferi and modulate the inflammatory response by expression of high and sustained levels of Fas ligand (FasL). This results in cytolytic activity towards activated Fas/high lymphocytes in the inflamed synovium, influencing the in situ immune response. The specific aims of the research portion of this project are to: 1) define the antigen presenting cells and molecules for borrelia-reactive gamma/delta T cell clones derived from Lyme synovial fluid, and identify the component(s) of B. burgdorferi recognized by these clones, 2) characterize the cytokine phenotype of borrelia-reactive gamma/delta T cell clones. and 3) further characterize the effector function of these clones by measuring the kinetics and stimuli for FasL expression, defining their target cell specificity, and defining any change in the cytokine profile of the

Studies 83

synovium that results from differential susceptibility to Fas-mediated cytolysis of various T cell subsets. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·

Project Title: Vector Competence for Malaria in Anopheles Quadri Maculatusspecies Complex Principal Investigator & Institution: Cogswell, Frank B.; ; Tulane University of Louisiana New Orleans, La 70118 Timing: Fiscal Year 2000; Project Start 1-JUN-1978; Project End 0-APR2002 Summary: Objectives To develop reagents for the improved diagnostic serology of Lyme disease. Results A segment (P7-1) of the variable domain of VlsE, the variant surface antigen of the spirochete Borrelia burgdorferi sensu lato was cloned and sequenced. and a conserved, immunodominant region of 26 amino acids (IR6) was identified. A 26mer peptide (C6) was synthesized on the basis of the IR6 sequence and a peptide ELISA was developed for serodiagnosis of Lyme disease. Ten rhesus monkeys were infected with Borrelia burgdorferi strains JD1 or B31 by either tick or needle inoculation. Blood samples were periodically collected for up to 3 years post-infection (PI) until the animals were sacrificed, and serum samples were assessed for antibody responses to C6. Anti-C6 antibody was detectable in 6 monkeys as early as week 2 and in the remaining animals between weeks 3 and 5 PI. Antibody persisted at high levels for as long as serum samples were monitored. Forty-one serum samples from patients the majority of which had cultureconfirmed, acute Lyme borreliosis, were obtained from the Centers for Disease Control and Prevention (CDC) and assessed with the C6 ELISA. Sensitivity was 85% (35/41), whereas with a commercially available Lyme disease ELISA it was 78% (32/41), and 49% (20/41) with a commercially available IgG Lyme immunoblot, 51% (21/41) with an IgM immunoblot, and 78% (32/41) by the combination of both IgG and IgM immunoblots. Of a group of 99 randomly collected serum samples from hospital patients in Louisiana, where Lyme disease is not endemic, only 2 were positive with the C6 ELISA. In addition, serum samples from 9/9 relapsing fever patients and 12/12 syphilitic patients also had no detectable anti-C6 antibodies. On the basis of the small number of serum samples tested thus far, the C6 peptide-based ELISA permits sensitive, specific and simple serodiagnosis of Lyme disease.. Future directions To extend our survey of crossreactivity; samples from patients with autoim mune diseases will be tested. FUNDING PUBLICATIONS None Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket

84 Lyme Disease

E-Journals: PubMed Central20 PubMed Central (PMC) is a digital archive of life sciences journal literature developed and managed by the National Center for Biotechnology Information (NCBI) at the U.S. National Library of Medicine (NLM).21 Access to this growing archive of e-journals is free and unrestricted.22 To search, go to http://www.pubmedcentral.nih.gov/index.html#search, and type “Lyme disease” (or synonyms) into the search box. This search gives you access to full-text articles. The following is a sample of items found for Lyme disease in the PubMed Central database: ·

A European Multicenter Study of Immunoblotting in Serodiagnosis of Lyme Borreliosis by J. Robertson, E. Guy, N. Andrews, B. Wilske, P. Anda, M. Granstrom, U. Hauser, Y. Moosmann, V. Sambri, J. Schellekens, G. Stanek, and J. Gray; 2000 June http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=86736&ren dertype=external

·

Archaeal-type lysyl-tRNA synthetase in the Lyme disease spirochete Borrelia burgdorferi by Michael Ibba, James L. Bono, Patricia A. Rosa, and Dieter Soll; 1997 December 23 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=24988

·

Borrelia burgdorferi B31 Erp Proteins That Are Dominant Immunoblot Antigens of Animals Infected with Isolate B31 Are Recognized by Only a Subset of Human Lyme Disease Patient Sera by Jennifer C. Miller, Nazira El-Hage, Kelly Babb, and Brian Stevenson; 2000 April http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=86492&ren dertype=external

·

Characterization of a Borrelia burgdorferi VlsE Invariable Region Useful in Canine Lyme Disease Serodiagnosis by Enzyme-Linked Immunosorbent Assay by Fang Ting Liang, Richard H. Jacobson, Reinhard K. Straubinger, Amy Grooters, and Mario T. Philipp; 2000 November http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=87557&ren dertype=external

Adapted from the National Library of Medicine: http://www.pubmedcentral.nih.gov/about/intro.html. 21 With PubMed Central, NCBI is taking the lead in preservation and maintenance of open access to electronic literature, just as NLM has done for decades with printed biomedical literature. PubMed Central aims to become a world-class library of the digital age. 22 The value of PubMed Central, in addition to its role as an archive, lies the availability of data from diverse sources stored in a common format in a single repository. Many journals already have online publishing operations, and there is a growing tendency to publish material online only, to the exclusion of print. 20

Studies 85

·

Characterization of Lyme Borreliosis Isolates from Patients with Erythema Migrans and Neuroborreliosis in Southern Sweden by Katharina Ornstein, Johan Berglund, Ingrid Nilsson, Ragnar Norrby, and Sven Bergstrom; 2001 April http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=87927&ren dertype=external

·

Crystal structure of Lyme disease antigen outer surface protein A complexed with an Fab by Hong Li, John J. Dunn, Benjamin J. Luft, and Catherine L. Lawson; 1997 April 15 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=20483

·

Direct Molecular Typing of Borrelia burgdorferi Sensu Lato Species in Synovial Samples from Patients with Lyme Arthritis by B. Jaulhac, R. Heller, F. X. Limbach, Y. Hansmann, D. Lipsker, H. Monteil, J. Sibilia, and Y. Piemont; 2000 May http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=86617&ren dertype=external

·

Dogs as Sentinels for Human Lyme Borreliosis in The Netherlands by H. A. T. Goossens, A. E. van den Bogaard, and M. K. E. Nohlmans; 2001 March http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=87839&ren dertype=external

·

Evaluation of Whole-Cell and OspC Enzyme-Linked Immunosorbent Assays for Discrimination of Early Lyme Borreliosis from OspA Vaccination by Chad A. Wieneke, Steven D. Lovrich, Steven M. Callister, Dean A. Jobe, Jennifer A. Marks, and Ronald F. Schell; 2000 January http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=88715&ren dertype=external

·

Genetic Diversity of Borrelia burgdorferi in Lyme Disease Patients as Determined by Culture versus Direct PCR with Clinical Specimens by Dionysios Liveris, Shobha Varde, Radha Iyer, Seth Koenig, Susan Bittker, Denise Cooper, Donna McKenna, John Nowakowski, Robert B. Nadelman, Gary P. Wormser, and Ira Schwartz; 1999 March http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=84470&ren dertype=external

·

Granulocytic Ehrlichiae in Ixodes persulcatus Ticks from an Area in China Where Lyme Disease Is Endemic by Wu-Chun Cao, Qiu-Min Zhao, Pan-He Zhang, J. Stephen Dumler, Xi-Tan Zhang, Li-Qun Fang, and Hong Yang; 2000 November http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=87564&ren dertype=external

86 Lyme Disease

·

Infection with Agents of Human Granulocytic Ehrlichiosis, Lyme Disease, and Babesiosis in Wild White-Footed Mice (Peromyscus leucopus) in Connecticut by Kirby C. Stafford, III, Robert F. Massung, Louis A. Magnarelli, Jacob W. Ijdo, and John F. Anderson; 1999 September http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=85405&ren dertype=external

·

Integrin [alpha]IIb[beta]3 Mediates Binding of the Lyme Disease Agent Borrelia burgdorferi to Human Platelets by J Coburn, JM Leong, and JK Erban; 1993 August 1 http://www.pubmedcentral.nih.gov/articlerender.fcgi?rendertype=abst ract&artid=47075

·

Isolation and Characterization of Borrelia burgdorferi Sensu Lato Strains in an Area of Italy Where Lyme Borreliosis Is Endemic by Lorenzo Ciceroni, Simonetta Ciarrochi, Alessandra Ciervo, Valeria Mondarini, Francesco Guzzo, Giuseppe Caruso, Rossella Murgia, and Marina Cinco; 2001 June http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=88120&ren dertype=external

·

Isolation and Transmission of the Lyme Disease Spirochete from the Southeastern United States by JH Oliver, Jr, FW Chandler, Jr, MP Luttrell, AM James, DE Stallknecht, BS McGuire, HJ Hutcheson, GA Cummins, and RS Lane; 1993 August 1 http://www.pubmedcentral.nih.gov/articlerender.fcgi?rendertype=abst ract&artid=47139

·

Isolation of Lyme Disease Borrelia from Puffins (Fratercula arctica) and Seabird Ticks (Ixodes uriae) on the Faeroe Islands by Asa Gylfe, Bjorn Olsen, Darius Strasevicius, Nuria Marti Ras, Pal Weihe, Laila Noppa, Yngve Ostberg, Guy Baranton, and Sven Bergstrom; 1999 April http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=84640&ren dertype=external

·

Lyme Disease: A Growing Threat to Urban Populations by AC Steere; 1994 March 29 http://www.pubmedcentral.nih.gov/articlerender.fcgi?rendertype=abst ract&artid=43375

·

Monoclonal Antibodies Specific for the Outer Surface Protein A (OspA) of Borrelia burgdorferi Prevent Lyme Borreliosis in Severe Combined Immunodeficiency (Scid) Mice by UE Schaible, MD Kramer, K Eichmann, M Modolell, C Museteanu, and MM Simon; 1990 May 15 http://www.pubmedcentral.nih.gov/articlerender.fcgi?rendertype=abst ract&artid=53984

Studies 87

·

Note:Comparison of the Yields of Blood Cultures Using Serum or Plasma from Patients with Early Lyme Disease by Gary P. Wormser, Susan Bittker, Denise Cooper, John Nowakowski, Robert B. Nadelman, and Charles Pavia; 2000 April http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=86513&ren dertype=external

·

Note:Effects of OspA Vaccination on Lyme Disease Serologic Testing by Maria E. Aguero-Rosenfeld, Janet Roberge, Carol A. Carbonaro, John Nowakowski, Robert B. Nadelman, and Gary P. Wormser; 1999 November http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=85737&ren dertype=external

·

Note:One-Step Reverse Transcriptase PCR Method for Detection of Borrelia burgdorferi mRNA in Mouse Lyme Arthritis Tissue Samples by F. X. Limbach, B. Jaulhac, Y. Piemont, J. L. Kuntz, H. Monteil, and J. Sibilia; 1999 June http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=85022&ren dertype=external

·

Note:Phenotypic and Genetic Characterization of a Novel Borrelia burgdorferi Sensu Lato Isolate from a Patient with Lyme Borreliosis by Guiqing Wang, Alje P. van Dam, and Jacob Dankert; 1999 September http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=85444&ren dertype=external

·

Note:Rapid Typing of Borrelia burgdorferi Sensu Lato Species in Specimens from Patients with Different Manifestations of Lyme Borreliosis by Jan D. Lunemann, Silvia Zarmas, Susanne Priem, Juliane Franz, Rolf Zschenderlein, Elisabeth Aberer, Rolf Klein, Leo Schouls, Gerd R. Burmester, and Andreas Krause; 2001 March http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=87886&ren dertype=external

·

Quantitative Approach for the Serodiagnosis of Canine Lyme Disease by the Immunoblot Procedure by Marta A. Guerra, Edward D. Walker, and Uriel Kitron; 2000 July http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=86982&ren dertype=external

·

Recombinant Chimeric Borrelia Proteins for Diagnosis of Lyme Disease by Maria J. C. Gomes-Solecki, John J. Dunn, Benjamin J. Luft, Jonathan Castillo, Daniel E. Dykhuizen, Xiaohua Yang, John D. Glass, and Raymond J. Dattwyler; 2000 July http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=86960&ren dertype=external

88 Lyme Disease

·

Recombinant Flagellin A Proteins from Borrelia burgdorferi Sensu Stricto, B. afzelii, and B. garinii in Serodiagnosis of Lyme Borreliosis by Jaana Panelius, Pekka Lahdenne, Harri Saxen, Tero Heikkila, and Ilkka Seppala; 2001 November http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=88480&ren dertype=external

·

Sensitive and Specific Serodiagnosis of Lyme Disease by EnzymeLinked Immunosorbent Assay with a Peptide Based on an Immunodominant Conserved Region of Borrelia burgdorferi VlsE by Fang Ting Liang, Allen C. Steere, Adriana R. Marques, Barbara J. B. Johnson, James N. Miller, and Mario T. Philipp; 1999 December http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=85863&ren dertype=external

·

Serologic Diagnosis of Lyme Borreliosis by Using Enzyme-Linked Immunosorbent Assays with Recombinant Antigens by Louis A. Magnarelli, Jacob W. Ijdo, Steven J. Padula, Richard A. Flavell, and Erol Fikrig; 2000 May http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=86574&ren dertype=external

·

Temporal Changes in Outer Surface Proteins A and C of the Lyme Disease-Associated Spirochete, Borrelia burgdorferi, during the Chain of Infection in Ticks and Mice by Tom G. Schwan and Joseph Piesman; 2000 January http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=88728&ren dertype=external

·

The Borrelia burgdorferi 37-Kilodalton Immunoblot Band (P37) Used in Serodiagnosis of Early Lyme Disease Is the flaA Gene Product by Robert D. Gilmore, Jr., Rendi L. Murphree, Angela M. James, Sarah A. Sullivan, and Barbara J. B. Johnson; 1999 March http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=84463&ren dertype=external

·

Therapeutic passive vaccination against chronic Lyme disease in mice by Weimin Zhong, Thomas Stehle, Crisan Museteanu, Annette Siebers, Lise Gern, Michael Kramer, Reinhard Wallich, and Markus M. Simon; 1997 November 11 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=25028

·

Use of Serum Immune Complexes in a New Test That Accurately Confirms Early Lyme Disease and Active Infection with Borrelia burgdorferi by Michael Brunner and Leonard H. Sigal; 2001 September http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=88321&ren dertype=external

Studies 89

·

Validity of Interpretation Criteria for Standardized Western Blots (Immunoblots) for Serodiagnosis of Lyme Borreliosis Based on Sera Collected throughout Europe by Ulrike Hauser, Gisela Lehnert, and Bettina Wilske; 1999 July http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=85128&ren dertype=external

The National Library of Medicine: PubMed One of the quickest and most comprehensive ways to find academic studies in both English and other languages is to use PubMed, maintained by the National Library of Medicine. The advantage of PubMed over previously mentioned sources is that it covers a greater number of domestic and foreign references. It is also free to the public.23 If the publisher has a Web site that offers full text of its journals, PubMed will provide links to that site, as well as to sites offering other related data. User registration, a subscription fee, or some other type of fee may be required to access the full text of articles in some journals. To generate your own bibliography of studies dealing with Lyme disease, simply go to the PubMed Web site at www.ncbi.nlm.nih.gov/pubmed. Type “Lyme disease” (or synonyms) into the search box, and click “Go.” The following is the type of output you can expect from PubMed for “Lyme disease” (hyperlinks lead to article summaries): ·

Lyme disease. Author(s): Brier SR. Source: Journal of Manipulative and Physiological Therapeutics. 1990 July-August; 13(6): 337-9. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=2394950&dopt=Abstract

·

Prevention of Lyme disease. Author(s): Couch P, Johnson CE.

PubMed was developed by the National Center for Biotechnology Information (NCBI) at the National Library of Medicine (NLM) at the National Institutes of Health (NIH). The PubMed database was developed in conjunction with publishers of biomedical literature as a search tool for accessing literature citations and linking to full-text journal articles at Web sites of participating publishers. Publishers that participate in PubMed supply NLM with their citations electronically prior to or at the time of publication.

23

90 Lyme Disease

Source: Am J Hosp Pharm. 1992 May; 49(5): 1164-73. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1595748&dopt=Abstract

Vocabulary Builder Adenoma: A benign epithelial tumour in which the cells form recognizable glandular structures or in which the cells are clearly derived from glandular epithelium. [EU] Alleles: Mutually exclusive forms of the same gene, occupying the same locus on homologous chromosomes, and governing the same biochemical and developmental process. [NIH] Antigens: Substances that are recognized by the immune system and induce an immune reaction. [NIH] Antimicrobial: Killing microorganisms, or suppressing their multiplication or growth. [EU] Arthralgia: Pain in a joint. [EU] Aseptic: Free from infection or septic material; sterile. [EU] Asymptomatic: Showing or causing no symptoms. [EU] Autoimmunity: Process whereby the immune system reacts against the body's own tissues. Autoimmunity may produce or be caused by autoimmune diseases. [NIH] Babesiosis: A group of tick-borne diseases of mammals including zoonoses in humans. They are caused by protozoans of the genus babesia, which parasitize erythrocytes, producing hemolysis. In the U.S., the organism's natural host is mice and transmission is by the deer tick ixodes scapularis. [NIH]

Biochemical: Relating to biochemistry; characterized by, produced by, or involving chemical reactions in living organisms. [EU] Biometry: The use of statistical methods to analyze biological observations and phenomena. [NIH] Cardiomyopathy: A general diagnostic term designating primary myocardial disease, often of obscure or unknown etiology. [EU] Carnitine: Constituent of striated muscle and liver. It is used therapeutically to stimulate gastric and pancreatic secretions and in the treatment of hyperlipoproteinemias. [NIH] Collagen: The protein substance of the white fibres (collagenous fibres) of

Studies 91

skin, tendon, bone, cartilage, and all other connective tissue; composed of molecules of tropocollagen (q.v.), it is converted into gelatin by boiling. collagenous pertaining to collagen; forming or producing collagen. [EU] Cutaneous: Pertaining to the skin; dermal; dermic. [EU] Cytokines: Non-antibody proteins secreted by inflammatory leukocytes and some non-leukocytic cells, that act as intercellular mediators. They differ from classical hormones in that they are produced by a number of tissue or cell types rather than by specialized glands. They generally act locally in a paracrine or autocrine rather than endocrine manner. [NIH] Enzyme: A protein molecule that catalyses chemical reactions of other substances without itself being destroyed or altered upon completion of the reactions. Enzymes are classified according to the recommendations of the Nomenclature Committee of the International Union of Biochemistry. Each enzyme is assigned a recommended name and an Enzyme Commission (EC) number. They are divided into six main groups; oxidoreductases, transferases, hydrolases, lyases, isomerases, and ligases. [EU] Epidemic: Occurring suddenly in numbers clearly in excess of normal expectancy; said especially of infectious diseases but applied also to any disease, injury, or other health-related event occurring in such outbreaks. [EU] Epitopes: Sites on an antigen that interact with specific antibodies. [NIH] Fatal: Causing death, deadly; mortal; lethal. [EU] Fibroblasts: Connective tissue cells which secrete an extracellular matrix rich in collagen and other macromolecules. [NIH] Flagellin: A protein with a molecular weight of 40,000 isolated from bacterial flagella. At appropriate pH and salt concentration, three flagellin monomers can spontaneously reaggregate to form structures which appear identical to intact flagella. [NIH] Genotype: The genetic constitution of the individual; the characterization of the genes. [NIH] Glomerular: Pertaining to or of the nature of a glomerulus, especially a renal glomerulus. [EU] Glomerulonephritis: A variety of nephritis characterized by inflammation of the capillary loops in the glomeruli of the kidney. It occurs in acute, subacute, and chronic forms and may be secondary to haemolytic streptococcal infection. Evidence also supports possible immune or autoimmune mechanisms. [EU] Gluten: The protein of wheat and other grains which gives to the dough its tough elastic character. [EU] Haplotypes: The genetic constitution of individuals with respect to one

92 Lyme Disease

member of a pair of allelic genes, or sets of genes that are closely linked and tend to be inherited together such as those of the major histocompatibility complex. [NIH] Hemorrhage: Bleeding or escape of blood from a vessel. [NIH] Hepatic: Pertaining to the liver. [EU] Hepatomegaly: Enlargement of the liver. [EU] Histocompatibility: The degree of antigenic similarity between the tissues of different individuals, which determines the acceptance or rejection of allografts. [NIH] Homologous: Corresponding in structure, position, origin, etc., as (a) the feathers of a bird and the scales of a fish, (b) antigen and its specific antibody, (c) allelic chromosomes. [EU] Hybridomas: Cells artificially created by fusion of activated lymphocytes with neoplastic cells. The resulting hybrid cells are cloned and produce pure or "monoclonal" antibodies or T-cell products, identical to those produced by the immunologically competent parent, and continually grow and divide as the neoplastic parent. [NIH] Immunization: The induction of immunity. [EU] Immunoassay: Immunochemical assay or detection of a substance by serologic or immunologic methods. Usually the substance being studied serves as antigen both in antibody production and in measurement of antibody by the test substance. [NIH] Invasive: 1. having the quality of invasiveness. 2. involving puncture or incision of the skin or insertion of an instrument or foreign material into the body; said of diagnostic techniques. [EU] Isoenzymes: One of various structurally related forms of an enzyme, each having the same mechanism but with differing chemical, physical, or immunological characteristics. [NIH] Kinetic: Pertaining to or producing motion. [EU] Lipoprotein: Any of the lipid-protein complexes in which lipids are transported in the blood; lipoprotein particles consist of a spherical hydrophobic core of triglycerides or cholesterol esters surrounded by an amphipathic monolayer of phospholipids, cholesterol, and apolipoproteins; the four principal classes are high-density, low-density, and very-lowdensity lipoproteins and chylomicrons. [EU] Malabsorption: Impaired intestinal absorption of nutrients. [EU] Masticatory: 1. subserving or pertaining to mastication; affecting the muscles of mastication. 2. a remedy to be chewed but not swallowed. [EU] Membrane: A thin layer of tissue which covers a surface, lines a cavity or

Studies 93

divides a space or organ. [EU] Molecular: Of, pertaining to, or composed of molecules : a very small mass of matter. [EU] Myopathy: Any disease of a muscle. [EU] Neurology: A medical specialty concerned with the study of the structures, functions, and diseases of the nervous system. [NIH] Neuropsychology: A branch of psychology which investigates the correlation between experience or behavior and the basic neurophysiological processes. The term neuropsychology stresses the dominant role of the nervous system. It is a more narrowly defined field than physiological psychology or psychophysiology. [NIH] Orofacial: Of or relating to the mouth and face. [EU] Osteoporosis: Reduction in the amount of bone mass, leading to fractures after minimal trauma. [EU] Papule: A small circumscribed, superficial, solid elevation of the skin. [EU] Pathologic: 1. indicative of or caused by a morbid condition. 2. pertaining to pathology (= branch of medicine that treats the essential nature of the disease, especially the structural and functional changes in tissues and organs of the body caused by the disease). [EU] Peromyscus: A genus of the subfamily Hesperomyinae consisting of 49 species. Two of these are widely used in medical research. They are P. leucopus, or the white-footed mouse, and P. maniculatus, or the deer mouse. [NIH]

Phenotype: The outward appearance of the individual. It is the product of interactions between genes and between the genotype and the environment. This includes the killer phenotype, characteristic of yeasts. [NIH] Photosensitivity: An abnormal cutaneous response involving the interaction between photosensitizing substances and sunlight or filtered or artificial light at wavelengths of 280-400 mm. There are two main types : photoallergy and photoxicity. [EU] Progressive: Advancing; going forward; going from bad to worse; increasing in scope or severity. [EU] Psychosomatic: Pertaining to the mind-body relationship; having bodily symptoms of psychic, emotional, or mental origin; called also psychophysiologic. [EU] Pulmonary: Pertaining to the lungs. [EU] Reagent: A substance employed to produce a chemical reaction so as to detect, measure, produce, etc., other substances. [EU] Recombinant: 1. a cell or an individual with a new combination of genes not

94 Lyme Disease

found together in either parent; usually applied to linked genes. [EU] Reinfection: A second infection by the same pathogenic agent, or a second infection of an organ such as the kidney by a different pathogenic agent. [EU] Respiratory: Pertaining to respiration. [EU] Rheumatology: A subspecialty of internal medicine concerned with the study of inflammatory or degenerative processes and metabolic derangement of connective tissue structures which pertain to a variety of musculoskeletal disorders, such as arthritis. [NIH] Serum: The clear portion of any body fluid; the clear fluid moistening serous membranes. 2. blood serum; the clear liquid that separates from blood on clotting. 3. immune serum; blood serum from an immunized animal used for passive immunization; an antiserum; antitoxin, or antivenin. [EU] Spectrum: A charted band of wavelengths of electromagnetic vibrations obtained by refraction and diffraction. By extension, a measurable range of activity, such as the range of bacteria affected by an antibiotic (antibacterial s.) or the complete range of manifestations of a disease. [EU] Synovial: Of pertaining to, or secreting synovia. [EU] Synovitis: Inflammation of a synovial membrane. It is usually painful, particularly on motion, and is characterized by a fluctuating swelling due to effusion within a synovial sac. Synovitis is qualified as fibrinous, gonorrhoeal, hyperplastic, lipomatous, metritic, puerperal, rheumatic, scarlatinal, syphilitic, tuberculous, urethral, etc. [EU] Systemic: Pertaining to or affecting the body as a whole. [EU] Transplantation: The grafting of tissues taken from the patient's own body or from another. [EU] Vaccination: The introduction of vaccine into the body for the purpose of inducing immunity. Coined originally to apply to the injection of smallpox vaccine, the term has come to mean any immunizing procedure in which vaccine is injected. [EU]

Patents 95

CHAPTER 5. PATENTS ON LYME DISEASE Overview You can learn about innovations relating to Lyme disease by reading recent patents and patent applications. Patents can be physical innovations (e.g. chemicals, pharmaceuticals, medical equipment) or processes (e.g. treatments or diagnostic procedures). The United States Patent and Trademark Office defines a patent as a grant of a property right to the inventor, issued by the Patent and Trademark Office.24 Patents, therefore, are intellectual property. For the United States, the term of a new patent is 20 years from the date when the patent application was filed. If the inventor wishes to receive economic benefits, it is likely that the invention will become commercially available to patients with Lyme disease within 20 years of the initial filing. It is important to understand, therefore, that an inventor’s patent does not indicate that a product or service is or will be commercially available to patients with Lyme disease. The patent implies only that the inventor has “the right to exclude others from making, using, offering for sale, or selling” the invention in the United States. While this relates to U.S. patents, similar rules govern foreign patents. In this chapter, we show you how to locate information on patents and their inventors. If you find a patent that is particularly interesting to you, contact the inventor or the assignee for further information.

24Adapted

from The U. S. Patent and Trademark Office: http://www.uspto.gov/web/offices/pac/doc/general/whatis.htm.

96 Lyme Disease

Patents on Lyme Disease By performing a patent search focusing on Lyme disease, you can obtain information such as the title of the invention, the names of the inventor(s), the assignee(s) or the company that owns or controls the patent, a short abstract that summarizes the patent, and a few excerpts from the description of the patent. The abstract of a patent tends to be more technical in nature, while the description is often written for the public. Full patent descriptions contain much more information than is presented here (e.g. claims, references, figures, diagrams, etc.). We will tell you how to obtain this information later in the chapter. The following is an example of the type of information that you can expect to obtain from a patent search on Lyme disease: ·

Tick (Ixodes scapularis) vector saliva-induced Lyme disease spirochete (Borrelia burgdorferi) antigens as vaccine candidates Inventor(s): Nelson; David R. (Wakefield, RI), Mather; Thomas N. (Wakefield, RI), Scorpio; Angelo (Columbia, MD) Assignee(s): The Board of Governors for Higher Education, State of Rhode Island (Providence, RI), Providence Plantations (Providence, RI) Patent Number: 6,312,915 Date filed: January 29, 1997 Abstract: The invention relates to a method by which new antigens from vector-borne pathogens may be discovered and analyzed by incubating the viable pathogens in the saliva of their vector host. Three such antigens, proteins with the approximate molecular weights of 19, 22 and 24 kDa, have been discovered and analyzed from a strain of B. burgdorferi T-15. The proteins provide a route for the development of immunodiagnostics for Lyme disease and related disorders. The proteins and related amino acids and DNA sequences may also be used for the immunization, for the detection of B. burgdorfei in human or body fluids, and also for the generation of specific antibodies for use in diagnosis, epidemiology, prevention of and treatment of Lyme disease. Excerpt(s): The present invention relates to the use of the saliva of a member of the family Ixodidae to induce the expression of proteins by Borrelia burgdorferi. Novel tick saliva-induced B. burgdorferi proteins can be used for the potential development of a vaccine against Lyme disease and for improved diagnostic kits for the detection of Lyme disease. ... Borrelia burgdorferi, a spirochete, is the causative agent of Lyme disease. It is a vector borne pathogen, transmitted by ticks of the Ixodes scapularis and Ixodes pacificus complexes in the United States.

Patents 97

Burgdorfer W., B. burgdorferi: Its Relationships to Tick Vectors, In Staken (ed): Lyme Borreliosis, II, Zbl Bakt Supplement 18, Stuttgart-New York, Gustav Fischer, 8-13, 1989. Infection with B. burgdorferi is the most common tick-borne infectious disease in the United States. In endemic areas, between 30 and 90% of Ixodes ticks are infected with this organism. ... The illness caused by B. burgdorferi is a multisystem infection that affects the skin, central nervous system, peripheral nerves, the heart and the joints, with nerve and joint involvement being the most common. Steere, A. C., S. E. Malawista, J. A. Hardin, S. Ruddy, W. Askenase, and W. A. Andiman, Erythema Chronicum Migrans and Lyme Arthritis: the Enlarging Spectrum, Ann Intern Med. 86:685-698, 1977a. The dissemination of spirochetes over time from the site of infection has been documented in a mouse model. Barthold, S. W., D. H. Persing, A. L. Armstrong, and R. A. Peeples, Kinetics of B. burgdorferi Dissemination and Evolution of Disease after Intradermal Inoculation of Mice, AM J. Pathol, 139:263-273, 1991. In these experiments it was shown that the spirochetes were multifocal in distribution with a predilection for collagenous connective tissue of joints, heart, arteries, nerves, muscles, skin and other tissues. In humans, nerve, joint and heart involvement is usually manifested when the disease reaches a chronic state. The pathogensis to a chronic state of nerve involvement, termed neuroborreliosis, is unclear, but may be due to a direct effect of the spirochetes at the site of infection, the host response to B. burgdorferi, or the host response to tissue antigens that may mimic those of Borrelia burgdorferi. Fikrig, E., R. Berland, M. Chen, S. Williams, L. H. Signal, and R. A. Flavell, Serological Response to B. burgdorferi Flagellin Demonstrates an Epitope Common to a Neuroblastoma Cell Line, Proc. Natl. Acad. Sci. 90:183-187, 1993. For example, spirochetes can be detected in the cerebrospinal fluid of patients with neuroborreliosis with a corresponding high level of antigen specific T-cells which suggests that a local immune response may be involved in the disease. However, the presence of spirochetes has yet to be demonstrated in biopsy specimens of affected nerve tissue suggesting that clinical manifestations may be due to some type of molecular mimicry. Indeed, it has been shown that antibodies reactive to a certain epitope of the B. burgdorferi flagellin molecule cross react with a neuroblastoma cell line. Fikrig, E., R. Berland, , M. Chen, S. Williams, L. H. Sigal , and R. A. Flavell, Serological Response to B. burgdorferi Flagellin Demonstrates an Epitope Common to a Neuroblastoma Cell Line, Proc. Natl. Acad. Sci. 90:183-187, 1993. Development of arthritic symptoms is similarly complex. Patients who develop arthritis usually show involvement of the knee joint with an increase of polymorphonuclear granulocytes in the synovial fluid. Steere, A. C., S. E. Malawista, and D. R. Snydman, Lyme Arthritis: An Epidemic

98 Lyme Disease

of oligoarticular Arthritis in Children and Adults in Three Connecticut Communities, Arthritis Rheum. 20:7-17, 1977. It has been hypothesized that spirochetes trigger a local immune response with autoreactive features in the joint, symptoms which may continue after the organisms no larger are viable. Girouard, L., D. C. Laux, S. Jindal, and D. R. Nelson, Immune Recognition of Human Hsp60 by Lyme Disease Patient Sra, Microb. Pathog. 14:287-297, 1993; and Steere, A. C., J. Feld, and R. Winchester, Association of Chronic Lyme Arthritis with Increased Frequencies of DR4 and 3, Arthritis Rheum. 31:98 (Abstract), 1988. As with nerve biopsies, culturing of spirochetes from synovial fluid of the joints is exceedingly difficult, being reported only twice, and direct observation is also rare. These phenomena are especially true as the disease progresses. Recent advances in the ability to detect small amounts of DNA using polymerase chain reaction (PCR) has led to conflicting results regarding the presence of spirochetes in the joint. Nocton, J. J., F. Dressler, B. J. Rutledge, P. N. Rys, D. H. Persing, and A. C. Steere, Detection of B. burgdorferi DNA by Polymerase Chain Reaction in Synovial Fluid in Lyme Arthritis, N. Engl. J. Med. (In press); and Malawista, S. E., T. L. Moore, D. E. Dodge, T. J. White, R. T. Schoen, and D. H. Persing, Failure of Multitarget Detection of Borrelia burgdorferiAssociated DNA Sequences in Synovial Fluids of Patients with Juvenile Rheumatoid Arthritis: A Cautionary Note, Arthritis Rheum. 35:246-247, 1992. Thus, as with neuroborreliosis, there appear to be two possibilities: septic arthritis with live organisms in the joint, and reactive arthritis where a microbial antigen at a remote site stimulates an immune response involving either antibodies or cytotoxic mononuclear cells that cross-react with a compartment of host tissue. Web site: http://www.delphion.com/details?pn=US06312915__ ·

Compositions and methods for the prevention and diagnosis of Lyme disease Inventor(s): Flavell; Richard A. (Killingworth, CT), Kantor; Fred S. (Orange, CT), Barthold; Stephen W. (Madison, CT), Fikrig; Erol (Guilford, CT) Assignee(s): Yale University (New Haven, CT) Patent Number: 6,197,301 Date filed: May 31, 1995 Abstract: Methods and compositions for the prevention and diagnosis of Lyme disease. OspA and OspB polypeptides and serotypic variants thereof, which elicit in a treated animal the formation of an immune

Patents 99

response which is effective to treat or protect against Lyme disease as caused by infection with B. burgdorferi. Anti-OspA and anti-OspB antibodies that are effective to treat or protect against Lyme disease as caused by infection with B. burgdorferi. A screening method for the selection of those OspA and OspB polypeptides and anti-OspA and antiOspB antibodies that are useful for the prevention and detection of Lyre disease. Diagnostic kits including OspA and OspB polypeptides or antibodies directed against such polypeptides. Excerpt(s): This invention relates to compositions and methods useful for the prevention, treatment and diagnosis of Lyme disease in humans and other animals. More particularly, this invention relates to OspA and OspB polypeptides which are able to elicit in a treated patient, the formation of an immune response which is effective to treat or protect against Lyme disease. This invention also relates to a screening method for selecting the OspA and OspB polypeptides of this invention which are able to elicit such an immune response. Also within the scope of this invention are antibodies directed against the OspA and OspB polypeptides and diagnostic kits comprising the antibodies or the polypeptides. ... Lyme borreliosis is the most common vectorborne infection in the United States [S. W. Barthold, et al., "An Animal Model For Lyme Arthritis", Ann. N.Y. Acad. Sci., 539, pp. 264-73 (1988)]. It has been reported in every continent except Antarctica. The clinical hallmark of Lyme Disease is an early expanding skin lesion known as erythema migrans, which may be followed weeks to months later by neurologic, cardiac, and joint abnormalities. ... The causative agent of Lyme disease is a recently recognized spirochete known as Borrelia burgdorferi, transmitted primarily by ixodes ticks that are part of the Ixodes ricinus complex. B. burgdorferi has also been shown to be carried in other species of ticks and in mosquitoes and deer flies, but it appears that only ticks of the I. ricinus complex are able to transmit the disease to humans. Web site: http://www.delphion.com/details?pn=US06197301__ ·

Nucleic acid amplification oligonucleotides and probes to Lyme disease associated Borrelia Inventor(s): Hogan; James J. (Coronado, CA), Yang; Yeasing (San Diego, CA), Carter; Nick (San Diego, CA) Assignee(s): Gen-Probe Incorporated (San Diego, CA) Patent Number: 6,074,826 Date filed: October 17, 1997

100 Lyme Disease

Abstract: The present invention discloses hybridization assay probes, amplification primers, nucleic acid compositions and methods useful for detecting Borrelia nucleic acids. Hybridization assay probes and amplification primers that selectively detect Lyme disease-associated Borrelia and distinguish those Borrelia from Borrelia hermsii are disclosed. Other hybridization probes selectively detect Borrelia hermsii and not Lyme disease-associated Borrelia are also described. Excerpt(s): The inventions described and claimed herein relate to the design and use of amplification oligonucleotides and nucleic acid probes to Borrelia organisms associated with Lyme disease, which allow detection of the organism in test samples, e.g., from tissue samples and body fluids, and from cultures. ... Lyme disease is a frequently diagnosed human disease and is the most prevalent tick-borne disease in North America, Europe and other parts of the world with a moderate climate. See, A. G. Barbour & D. Fish, Science 260:1610-16 (1993); J. F. Anderson, Rev. Insect Dis. 11:51451-59 (1989); A. C. Steere, N. Engl. J. Med., 331:58696 (1989). Lyme disease or Lyme borreliosis is a multistage infection caused by Borrelia spirochetes. The Borrelia organism is transmitted to humans and animals by infected Ixodes ticks. White-tailed deer and the white-footed mouse, Peromyscus leucopus, serve as primary reservoirs in nature for the adult tick and larval forms, respectively. ... Cultivation of Borrelia organisms from body fluids is difficult, making microbiological diagnosis of lyme borreliosis by culturing unsatisfactory. Serological tests to detect B. burgdorferi have been developed including enzyme-linked immunosorbent assay [ELISA], indirect immunofluorescence assay (IFA) and western blotting. See, M. G. Golightly, Am. J. Clin. Pathol., 99:168-74 (1993). However, poor standardization, false-positive and false-negative results do occur with these serologic tests and limit their usefulness. See, Barbour, Ann. Intern. Med., 110:504 (1989). Patients with early (Stage I) or Stage II infections may not yet have developed detectable levels of antibodies and cross reactions with Treponema or other Borrelia not associated with Lyme disease may occur. Treatment with antibiotics may also prevent or delay the development of detectable antibodies in patients with Lyme borreliosis. Together these deficiencies limit the usefulness and reliability of serologic tests in diagnosis and treatment of Lyme borreliosis. Web site: http://www.delphion.com/details?pn=US06074826__

Patents 101

·

Modified western blot membrane and method for detecting lyme disease and other tick-borne diseases Inventor(s): Levin; Andrew E. (Wellesley, MA) Assignee(s): Immunetics, Incorporated (Cambridge, MA) Patent Number: 6,013,460 Date filed: September 12, 1997 Abstract: Modified Western blot membranes and methods of using same are provided which allow confirmation of Lyme disease and screening for at least one additional tick-borne disease. The membranes and methods of the present invention may thus be used to screen for the presence of tick-borne diseases which may be transferred along with Lyme disease. A Western blot assay may also be employed to confirm the presence of such additional tick-borne disease. Excerpt(s): The present invention relates generally to a diagnostic method for detecting tick-borne disease and more specifically, a modified Western blot membrane and method of using same for detecting Lyme disease as well as other tick-borne diseases which may accompany Lyme disease during its transmission. In particular, the modified Western blot membrane and method of the present invention may be used to simultaneously confirm Lyme disease and screen for at least one additional tick-borne disease. ... Lyme disease is a progressive, systemic infection caused by the spirochete Borrelia burgdorferi. The disease is transmitted to man by the bite of the deer tick (Ixodes scapularis and other species). Diagnostic tests for Lyme disease rely mainly on the detection of human antibodies to spirochetal antigens. The principal test used for screening human sera for antibodies to the Lyme spirochete is enzyme-linked immunosorbent assay (ELISA). Due to the significant inaccuracies inherent in ELISA, sera which are ELISA-positive or indeterminate are often subjected to a confirmatory test. The confirmatory test now in most common use and officially recommended by the U.S. Centers for Disease Control (CDC) is the Western blot. In a conventional Western blot assay, antigens of a given pathogen are resolved into discrete bands on the surface of a paper-like nitrocellulose membrane. The serum to be tested is allowed to react with the antigen bands, and serum antibodies which bind specific bands are detected with a labeled anti-human antibody reagent. Typically, results of the Western blot test appear as a series of bands on a membrane strip. The pattern of bands is compared with the band pattern of known positive sera to produce a diagnostic result. The exact position of bands, and the number of bands which correlate with positivity, differ depending on the pathogen. ... Considerable effort has been expended to develop new and

102 Lyme Disease

improved diagnostic tests for Lyme disease. For example, U.S. Pat. No. 5,187,065 discloses methods of detecting Lyme disease in mammals that otherwise show seronegativity due to the generation of immune complexes which "hide" the antibodies raised to the spirochete; disassociation of such complexes followed by immunological assay procedures such as ELISA are described. U.S. Pat. No. 5,470,712 provides bioassays which incorporate non-flaggellar B. burgdorferi proteins, or antibodies raised to such proteins, to create an assay where such proteins or antibodies are bound to a surface and form complexes with certain components of the serum. Similarly, U.S. Pat. No. 5,308,753 teaches the formation of assays which may be used to diagnose Lyme and other diseases which induce primary or secondary IgM antibody-mediated immunity. U.S. Pat. No. 5,217,872 teaches a method of detecting B. burgdorferi antigens through an assay which utilizes vesicle proteins released from the spirochete, while U.S. Pat. Nos. 5,494,797 and 5,324,630 teach the detection of the Lyme spirochete via oligonucleotide probes. U.S. Pat. No. 4,888,276 describes a reliable, noninvasive method for detecting antigens of B. burgdorferi from the urine of affected individuals and U.S. Pat. No. 5,155,022 teaches an improved method of assaying for Lyme disease by eliminating crossreacting antibodies. Both U.S. Pat. Nos. 4,859,419 and 5,100,626 provide apparati that are able to assay multiple samples for a specific disease such as Lyme. However, none of these patents teach a method of simultaneously assaying for Lyme disease and other diseases. Web site: http://www.delphion.com/details?pn=US06013460__ ·

Control of lyme disease spirochete Inventor(s): Poche ; Richard M. (Ft. Collins, CO) Assignee(s): Genesis Laboratories, Inc. (Wellington, CO) Patent Number: 5,932,437 Date filed: April 13, 1998 Abstract: A method is described for controlling the spread of Lyme Disease spirochete from rodents which have been infected. The method involves orally administering to the rodents a composition which includes an antibiotic (e.g., tetracycline) which is capable of killing the spirochete. Bait compositions are described which include an antibiotic. The bait compositions may be solid or liquid. Excerpt(s): This invention relates to methods and techniques for controlling Lyme Disease spirochete in rodents. ... In recent times, Lyme Disease has emerged as an increasing public health threat. The Center for

Patents 103

Disease Control has reported that the number of Lyme Disease cases has increased steadily from 1982 to 1995 with 47 of 50 states reporting at least one case of Lyme Disease. In the United States, three ticks of the Ixodes genus, Ixodes scapularis and Ixodes dammini in the East and Ixodes pacificus in the West commonly carry the spirochete that causes the disease and are in a two year enzootic cycle with rodents and deer. ... There has not heretofore been described an effective technique for controlling the Lyme disease spirochete Borrelia burgdorferi in rodents. Web site: http://www.delphion.com/details?pn=US05932437__ ·

Hybridomas producing antibodies specific for lyme disease antigens OspA and OspB Inventor(s): Simon; Markus M. (Freiburg, DE), Schaible; Ulrich E. (Freiburg, DE), Eichmann; Klaus (Freiburg, DE), Kramer; Michael (Heidelberg, DE), Reinhard; Wallich (Heidelberg, DE) Assignee(s): Max-Planck-Gesellschaft zur Forderung der Wissenschaften (Heidelberg, DE) Patent Number: 5,856,447 Date filed: February 23, 1998 Abstract: The present invention provides a vaccine against Lyme disease, wherein it contains one or more monoclonal antibodies which are specific for the 31 kD antigen (OspA) or the 34 kD antigen (OspB) of Borrelia burgdorferi.The present invention also provides a process for obtaining this vaccine, as well as new monoclonal antibodies, hybridomas and antigens. Excerpt(s): The present invention is concerned with a vaccine against Lyme disease, with a process for obtaining said vaccine, with new monoclonal antibodies, with new antigens and with new recombinant DNA's and vectors. ... Lyme borreliosis is the most common infectious disease transmitted by ticks in the temperate regions. It is caused by the spirochete Borrelia burgdorferi which is transmitted to humans in particular by ticks of the genus Ixodes. The disease is a chronic, progressive infection which attacks many organs, such as the skin, the central and peripheral nervous system, the heart, the liver, the kidneys and musculoskeletal system. Since a reliable treatment of this disease by therapy with antibiotics is difficult, at the moment great efforts are being made to investigate the pathogen itself and the immune response of the host to infection with Borrelia burgdorferi. In the case of persons afflicted by Lyme disease, there is admittedly ascertained a high titre of antibodies against Borrelia burgdorferi which, however, do not provide any

104 Lyme Disease

protection against the infection. It is assumed that the pathogen passes over very quickly from the blood circulation into the tissues and can there no longer be directly reached by the immune system. This would mean that a protection by antibodies is only possible immediately after commencement of the infection, i.e. as long as the pathogen is still present in the blood circulation. ... The fact that a natural infection with Borrelia burgdorferi has been found in various kinds of animals has led to attempts to establish laboratory models for Lyme disease. This also took place with limited success. Thus, in the case of experiments which had the object of inducing in mice a specific immune response for Borrelia burgdorferi, it was found that the infection of inbred mouse strains with a prolonged cultured isolate of Borrelia burgdorferi led to moderate but significant pathomorphological changes in various organs, such as the brain, the heart, the lungs and the kidneys, which were comparable to those which are to be observed in patients with Lyme disease (see Schaible et al., Infect. Immun., 1, 41/1988). The development of a serious aspect of the disease in animals was presumably prevented either by the immune defence of the host and/or by the reduced virulence of spirochetes cultured in vitro for a comparatively long period of time (see Johnson et al., J. Clin. Microbiol., 20, 747/1984; Schwan et al., Infect. and Immun., 56, 1837/1988). Web site: http://www.delphion.com/details?pn=US05856447__ ·

Passive vaccine against Lyme disease Inventor(s): Simon; Markus M. (Freiburg, DE), Schaible; Ulrich E. (Freiburg, DE), Eichmann; Klaus (Freiburg, DE), Kramer; Michael (Heidelberg, DE), Reinhard; Wallich (Heidelberg, DE) Assignee(s): Max-Planck-Gesellschaft zur Forderung der Wissenschaften e.V. (Gottingen, DE), Deutsches Krebsforschun Zentrum Stiftung des Offentlichen Rechts (Heidelberg, DE) Patent Number: 5,780,030 Date filed: March 20, 1995 Abstract: The present invention provides a vaccine against Lyme disease, wherein it contains one or more monoclonal antibodies which are specific for the 31 kD antigen (OspA) or the 34 kD antigen (OspB) of Borrelia burgdorferi. The present invention also provides a process for obtaining this vaccine, as well as new monoclonal anti-bodies and antigens. Excerpt(s): The present invention is concerned with a vaccine against Lyme disease, with a process for obtaining said vaccine, with new monoclonal antibodies, with new antigens and with new recombinant

Patents 105

DNA's and vectors. ... Lyme borreliosis is the most common infectious disease transmitted by ticks in the temperate regions. It is caused by the spirochete Borrelis burgdorferi which is transmitted to humans in particular by ticks of the genus Ixodes. The disease is a chronic, progressive infection which attacks many organs, such as the skin, the central and peripheral nervous system, the heart, the liver, the kidneys and musculoskeletal system. Since a reliable treatment of this disease by therapy with antibiotics is difficult, at the moment great efforts are being made to investigate the pathogen itself and the immune response of the host to infection with Borrelia burgdorferi. In the case of persons afflicted by lyme disease, there is admittedly ascertained a high titre of antibodies against Borrelia burgdorferi which, however, do not provide any protection against the infection. It is assumed that the pathogen passes over very quickly from the blood circulation into the tissues and can there no longer be directly reached by the immune system. This would mean that a protection by antibodies is only possible immediately after commencement of the infection, i.e. as long as the pathogen is still present in the blood circulation. ... The fact that a natural infection with Borrelia burgdorferi has been found in various kinds of animals has led to attempts to establish laboratory models for Lyme disease. This also took place with limited success. Thus, in the case of experiments which had the object of inducing in mice a specific immune response for Borrelia burgdorferi, it was found that the infection of inbred mouse strains with a prolonged cultured isolate of Borrelia burgdorferi led to moderate but significant pathomorphological changes in various organs, such as the brain, the heart, the lungs and the kidneys, which were comparable to those which are to be observed in patients with Lyme disease (see Schaible et al., Infect. Immun., 1, 41/1988). The development of a serious aspect of the disease in animals was presumably prevented either by the immune defense of the host and/or by the reduced virulence of spirochetes cultured in vitro for a comparatively long period of time (see Johnson et al., J. clin licrobiol.20, 747/1984; Schwan et al., Infect . and Immun., 56, 1837/1988). Web site: http://www.delphion.com/details?pn=US05780030__

106 Lyme Disease

·

Nucleic acid molecule encoding antigen associated with lyme disease Inventor(s): Simon; Markus M. (Freiburg, DE), Schaible; Ulrich E. (Freiburg, DE), Eichmann; Klaus (Freiburg, DE), Kramer; Michael (Heidelberg, DE), Reinhard; Wallich (Heidelberg, DE) Assignee(s): Max-Planck-Gesellschaft zur Forderung der Wissenscaften E.V. (Gottingen, DE), Deutsches Krebsforschun Zentrum Stiftung des Offentlichen Rechts (Heidelberg, DE) Patent Number: 5,686,267 Date filed: March 20, 1995 Abstract: A vaccine against Lyme disease, wherein it contains one or more monoclonal antibodies which are specific for the 31 kD antigen (OspA) or the 34 kD antigen (OspB) of Borrelia burgdorferi. The present invention also provides a process for obtaining this vaccine, as well as new monoclonal antibodies and antigens. Excerpt(s): The present invention is concerned with a vaccine against Lyme disease, with a process for obtaining said vaccine, with new monoclonal antibodies, with new antigens and with new recombinant DNA's and vectors. ... Lyme borreliosis is the most common infectious disease transmitted by ticks in the temperate regions. It is caused by the spirochete Borrelia burgdorferi which is transmitted to humans in particular by ticks of the genus Ixodes. The disease is a chronic, progressive infection which attacks many organs, such as the skin, the central and peripheral nervous system, the heart, the liver, the kidneys and musculoskeletal system. Since a reliable treatment of this disease by therapy with antibiotics is difficult, at the moment great efforts are being made to investigate the pathogen itself and the immune response of the host to infection with Borrelia burgdorferi. In the case of persons afflicted by Lyme disease, there is admittedly ascertained a high titre of antibodies against Borrelia burgdorferi which, however, do not provide any protection against the infection. It is assumed that the patbogen passes over very quickly from the blood circulation into the tissues and can there no longer be directly reached by the immune system. This would mean that a protection by antibodies is only possible immediately after commencement of the infection, i.e. as long as the pathogen is still present in the blood circulation. ... The fact that a natural infection with Borrelia burgdorferi has been found in various kinds of animals has led to attempts to establish laboratory models for Lyme disease. This also took place with limited success. Thus, in the case of experiments which had the object of inducing in mice a specific immune response for Borrelia burgdorferi, it was found that the infection of inbred mouse strains with a prolonged cultured isolate of Borrelia burgdorferi led to

Patents 107

moderate but significant pathomorphological changes in various organs, such as the brain, the heart, the lungs and the kidneys, which were comparable to those which are to be observed in patients with Lyme disease (see Schaible et al., Infect. Immun., 1, 41/1988). The development of a serious aspect of the disease in animals was presumably prevented either by the immune defence of the host and/or by the reduced virulence of spirochetes cultured in vitro for a comparatively long period of time (see Johnson et al., J. Clin. Microbiol., 20, 747/1984; Schwan et al., Infect. and Immun., 56, 1837/1988). Web site: http://www.delphion.com/details?pn=US05686267__ ·

Methods for diagnosing early Lyme disease Inventor(s): Padula; Steven J. (Simsbury, CT) Assignee(s): University of Connecticut (Storrs, CT) Patent Number: 5,620,862 Date filed: November 24, 1993 Abstract: The invention relates to DNA encoding Borrelia burgdorferi sensu stricto outer surface protein C. Purified and recombinant forms of a 23 kDa protein from a Connecticut isolate of B. burgdorferi are described. The 23 kDa protein, referred to as p23 or OspC, can be used for immunodiagnostic assays for detection of early Lyme disease. The protein, amino acid coding for the protein and DNA sequences can be used to prevent Lyme disease, to diagnose/detect B. burgdorferi in human or animal tissues or body fluids. Antibodies specific for the protein can also be generated. Excerpt(s): Lyme disease is a multisystem infection caused by the tickborne spirochete, B. burgdorferi (Steere, 1989). Because of the low yield of both culture and direct visualization techniques for identification of this organism, the diagnosis of Lyme disease has relied on serologic confirmation in patients with characteristic clinical findings. ... Recognizing Lyme disease in the early stages can be difficult, however, because patients may not manifest the characteristic rash or may have only non-specific flu-like symptoms. This difficulty of diagnosis is compounded by the delayed emergence of a humoral response to the spirochete as detected by available serologic tests (Steere, 1989). These tests, which currently lack standardization, also do not readily distinguish between reactivity to B. burgdorferi proteins and crossreactive proteins from commensual or other pathogenic organisms (Hansen et al., 1988; Magnarelli et al., 1987). Delay in establishing the diagnosis of Lyme disease in its early stages is clinically important

108 Lyme Disease

because timely institution of appropriate antibiotic treatment can prevent the serious sequelae from this potentially chronic infection (Dattwyler et al., 1990; Steere et al., 1983). ... Initial studies with immunoblot analysis of patients from North America with the early manifestations of Lyme disease found IgM reactivity predominantly against the 41 kDa flagellar protein of B. burgdorferi (Barbour et al., 1986; Craft et al., 1986). In hope of improving the level of detection of the antibody response in early Lyme disease, studies have utilized enriched preparations and recombinant forms of the 41 kDa flagellar protein as target antigen for serologic testing (Magnarelli et al., 1992; Coleman et al., 1987). This approach was prompted by the initial immunoblot studies with B. burgdorferi lysates in which an early and predominant IgM antibody response to the flagellar protein was demonstrated by Craft et al., 1986. Use of the flagellar protein-based serologic tests may be problematic because of the relatively frequent finding of cross-reactive antibodies to conserved flagellar epitopes from commonly occurring commensual and pathogenic spirochetes, such as those found in the mouth (Magnarelli et al., 1990; Russell et al., 1984). Web site: http://www.delphion.com/details?pn=US05620862__ ·

Flagellin-based polypeptides for the diagnosis of lyme disease Inventor(s): Flavell; Richard A. (Killingworth, CT), Fikrig; Erol (Guilford, CT), Berland; Robert (Kingston, NY) Assignee(s): Yale University (New Haven, CT) Patent Number: 5,618,533 Date filed: December 10, 1993 Abstract: Diagnostic means and methods for Lyme disease comprising B. burgdorferi flagellin polypeptides and antibodies. Compositions and methods comprising neuroborreliosis-associated antigens useful for the detection, treatment and prevention of neuroborreliosis, arthritis, carditis and other manifestations of Lyme disease. Excerpt(s): This invention relates to flagellin-based compositions and methods useful for the diagnosis and treatment of Lyme disease. More particularly, this invention relates to flagellin polypeptides which are useful to detect the presence of B. burgdorferi in humans and other animals, and which are useful to diagnose and treat neuroborreliosis, arthritis, carditis and other manifestations of Lyme disease. Also within the scope of this invention are antibodies directed against the flagellin polypeptides and diagnostic kits comprising the antibodies or polypeptides. ... Lyme borreliosis is the most common vector-borne

Patents 109

infection in the United States [S. W. Barthold, et al., "An Animal Model For Lyme Arthritis", Ann. N.Y. Acad. Sci., 539, pp. 264-73 (1988)]. It has been reported in every continent except Antarctica. The clinical hallmark of Lyme Disease is an early expanding skin lesion known as erythema migrans (ECM), which may be followed weeks to months later by neurologic, cardiac, and joint abnormalities. ... The causative agent of Lyme disease is a spirochete known as Borrelia burgdorferi, transmitted primarily by ixodes ticks that are part of the Ixodes ricinus complex. B. burgdorferi has also been shown to be carried in other species of ticks and in mosquitoes and deer flies, but it appears that only ticks of the I. ricinus complex are able to transmit the disease to humans. Web site: http://www.delphion.com/details?pn=US05618533__ ·

Method for detecting lyme disease Inventor(s): McCann; Daisy S. (Ontario, CA), Chuba; Paul (Detroit, MI) Assignee(s): McCann Associates, Inc. (Wayne, MI) Patent Number: 5,494,797 Date filed: July 8, 1994 Abstract: Described is a method of detecting the presence of Lyme Disease organism comprising the steps of (a) combining a sample with an oligonucleotide probe for the organism; (b) hybridizing the probe with the organism; and (c) determining the presence of the organism hybridized with the probe. Also described is a kit containing a hybridization buffer, a labeled probe, and filter assemblies on which the hybridized product may be placed during the hybridization reaction. The kit may also contain positive and negative control filters to assist in the evaluation of unknown specimens. Excerpt(s): This invention relates to Lyme disease. ... Lyme disease is a systemic tick-borne illness generally characterized as a reddish or purplish target rash radiating around the tick bite. Lyme disease is generally characterized as being caused by a spirochete bacteria Borrelia burgdorferi. Various sub-species and strains of this organism have been identified, but their inter-relationship is not finally determined. ... The diagnostic acumen for Lyme Disease is poor. The ability to quickly and reliably detect the presence of Borrelia burgdorferi in patients suspected of having Lyme Disease is of great medical importance. The in-vitro culture of Borrelia burgdorferi is currently the most effective technique but is an impractical method of diagnosis. Web site: http://www.delphion.com/details?pn=US05494797__

110 Lyme Disease

·

Specific and sensitive diagnostic test for Lyme disease Inventor(s): Simpson; Warren J. (Hamilton, MT), Schwan; Tom (Hamilton, MT), Garon; Claude (Hamilton, MT) Assignee(s): The United States of America as represented by the Department of Health (Washington, DC) Patent Number: 5,489,511 Date filed: December 27, 1993 Abstract: A sensitive DNA probe for detecting infection by Borrelia burgdorferi, the causative agent of Lyme disease, is provided. Excerpt(s): The present invention is related generally to diagnostic tests. More particularly, the present invention is related to providing specific and sensitive diagnostic probes for detecting infection by Borrelia burgdorferi, the causative agent of Lyme disease. Web site: http://www.delphion.com/details?pn=US05489511__

·

Nucleic acid probes for the detection of Lyme disease spirochetes Inventor(s): Weisburg; William G. (Milford, MA) Assignee(s): Amoco Corporation () Patent Number: 5,466,577 Date filed: October 27, 1993 Abstract: Nucleic acid probes are described for detecting bacteria capable of causing Lyme disease. These probes complement the ribosomal ribonucleic acid sequences unique to Borrelia spirochetes, and as such can detect the rRNA, rDNA, or polymerase chain reaction amplification products of these genes. These probes, plus the described amplification primers, can be used to detect the etiological agent of Lyme disease in human or veterinary samples, and for determining the infective potential of Ixodes ticks. Excerpt(s): This invention relates to detection of bacteria belonging to the species Borrelia burgdorferi and related species of tick-borne spirochetes capable of causing human and veterinary disease. More specifically, it provides nucleic acid probes and compositions along with methods for their use for the specific detection of Lyme disease causing bacteria. ... Lyme borreliosis, Lyme disease, Lyme arthritis, Bannwarth's syndrome, or erythema chronicum migrans (ECM) are synonymous designations for a zoonotic spirochetal infection transmitted by the bite of ticks of the genus Ixodes. Although the disease was known in Europe for quite some

Patents 111

time, it was not discovered in the United States until a 1975 arthritis epidemic occurred in Connecticut. A presumptive etiological agent was isolated from a tick in 1982 (Burgdorfer et. al, Science 216:1317-1319, 1982). In 1984, the spirochete was shown to be a member of the genus Borrelia, and formally named Borrelia burgdorferi (Johnson et. al, Int. J. Syst. Bacteriol. 34:496-497, 1984). As such, it is an evolutionary relative of Borrelia hermsii, Borrelia turicatae, Borrelia anserina, and other members of this arthropod associated genus of spiral bacteria. ... Lyme disease is a serious chronic borrelial infection characterized by a diversity of symptoms at various stages. Approximately 3 to 14 days following the initiating tick bite, symptoms may include fever, flu-like illness, and the appearance of the ECM skin rash. Stage two, occurring weeks to months after the initial bite includes further skin involvement, arthritis, nervous system complaints, and cardiac pathology. Stage three is characterized by more severe arthritis and nervous system complications. Web site: http://www.delphion.com/details?pn=US05466577__ ·

Sensitive diagnostic test for lyme disease Inventor(s): Rosa; Patricia A. (Hamilton, MT) Assignee(s): The United States of America as represented by the Department of Health (Washington, DC) Patent Number: 5,279,938 Date filed: May 18, 1992 Abstract: The nucleotide sequence of a recombinant clone containing a specific segment of Borrelia burgdorferi DNA which enables the identification of the spirochetes causing Lyme disease has been provided. A diagnostic kit containing oligonucleotide primers derived from this sequence, suitable for the detection of Borrelia burgdoferi in a PCR assay, as well as the cloned DNA of the present invention, allows the detection of Lyme disease with sensitivity and specificity not heretofore attained by any other test. Excerpt(s): The present invention relates generally to diagnostic tests, particularly to assays and kits. More particularly, the present invention relates to a diagnostic kit comprising containers containing various components for performing a sensitive and specific assay for detecting the presence of Lyme disease spirochetes. ... Diagnosis of Lyme disease is often not straightforward. There exist well-documented cases of Lyme disease where knowledge of tick bite, skin rash or positive serology are missing (Magnarelli, et al, 1987, J. Infect. Dis, 156: 183-187; Craft et al, 1984, J. Infect. Dis., 149: 789-795; Dattwyler et al, 1988, N. Engl. J. Med.,

112 Lyme Disease

319: 1441-1446). Most of the systemic manifestations of advanced Lyme disease are not unique and demonstration of spirochetes in patients is extremely difficult (Steere, et al, 1983, N. Engl. J. Med., 308: 733-740). Considering the debilitating nature of the advanced stages of the disease, an accurate diagnostic tool remains a critical need. ... It is an additional object of the present invention to provide a diagnostic test for Lyme disease. Web site: http://www.delphion.com/details?pn=US05279938__ ·

Method and materials for detecting lyme disease Inventor(s): Schutzer; Steven E. (21 Canterbury Rd., Great Neck, NY 11021) Assignee(s): none reported Patent Number: 5,187,065 Date filed: December 22, 1989 Abstract: A method for detecting the onset or presence of Lyme disease in a mammal, which comprises isolating a biological sample from the mammal, isolating from said biological sample any circulating immune complexes suspected to contain antibody reactive to Borrelia burgdorferi, dissociating the immune complexes so isolated, and examining the dissociated immune complexes for the presence of antibody. The present method offers a simple and reliable means for detecting Borrelia antibodies. Test kits and related methodology are also disclosed. Excerpt(s): The Applicant is author or co-author of articles, submitted or to be submitted for publication, directed to the subject matter of the present invention: (e.g. "Sequestration of Antibody to Borrelia burgdorferi in Immune Complexes in Seronegative Lyme Disease" (submitted for publication). The above listed articles are incorporated herein by reference. ... The present invention relates to the detection of Lyme disease, and particularly to the clinically reliable examination and detection of Lyme disease in instances of seronegativity in mammals and particularly in humans. ... Seronegativity is one of the major obstacles to diagnosis of Lyme disease as well as a common unexplained feature of the disease. Lyme disease, etiologically linked to the spirochete, Borrelia burgdorferi, may present acutely or develop insidiously. Its manifestations are protean and may specifically involve the musculoskeletal, cardiovascular, cutaneous, and nervous systems. Some cases begin with a characteristic cutaneous lesion, erythema chronicum migrans (ECM), following a deer tick bite. However, many others are unaware of a tick bite or skin lesion, making diagnosis difficult, yet

Patents 113

develop features of Lyme disease. Diagnosis is also complicated when symptomatic individuals are negative for Borrelia burgdorferi antibody despite sensitive serological assays. Untreated patients as well as patients who have received early antibiotic therapy may remain seronegative even when symptoms of infection persist. Web site: http://www.delphion.com/details?pn=US05187065__

Patent Applications on Lyme Disease As of December 2000, U.S. patent applications are open to public viewing.25 Applications are patent requests which have yet to be granted (the process to achieve a patent can take several years).

Keeping Current In order to stay informed about patents and patent applications dealing with Lyme disease, you can access the U.S. Patent Office archive via the Internet at no cost to you. This archive is available at the following Web address: http://www.uspto.gov/main/patents.htm. Under “Services,” click on “Search Patents.” You will see two broad options: (1) Patent Grants, and (2) Patent Applications. To see a list of granted patents, perform the following steps: Under “Patent Grants,” click “Quick Search.” Then, type “Lyme disease” (or synonyms) into the “Term 1” box. After clicking on the search button, scroll down to see the various patents which have been granted to date on Lyme disease. You can also use this procedure to view pending patent applications concerning Lyme disease. Simply go back to the following Web address: http://www.uspto.gov/main/patents.htm. Under “Services,” click on “Search Patents.” Select “Quick Search” under “Patent Applications.” Then proceed with the steps listed above.

Vocabulary Builder Arteries: The vessels carrying blood away from the heart. [NIH] Cardiovascular: Pertaining to the heart and blood vessels. [EU] Cytotoxic: Pertaining to or exhibiting cytotoxicity. [EU] Granulocytes: Leukocytes with abundant granules in the cytoplasm. They 25

This has been a common practice outside the United States prior to December 2000.

114 Lyme Disease

are divided into three groups: neutrophils, eosinophils, and basophils. [NIH] Humoral: Of, relating to, proceeding from, or involving a bodily humour now often used of endocrine factors as opposed to neural or somatic. [EU] Hybridization: The genetic process of crossbreeding to produce a hybrid. Hybrid nucleic acids can be formed by nucleic acid hybridization of DNA and RNA molecules. Protein hybridization allows for hybrid proteins to be formed from polypeptide chains. [NIH] Membranes: Thin layers of tissue which cover parts of the body, separate adjacent cavities, or connect adjacent structures. [NIH] Polypeptide: A peptide which on hydrolysis yields more than two amino acids; called tripeptides, tetrapeptides, etc. according to the number of amino acids contained. [EU] Ricinus: An euphorbiaceous plant with very toxic seeds. The castor bean, castor oil, ricin, and other lectins are its most important products. [NIH] Saliva: The clear, viscous fluid secreted by the salivary glands and mucous glands of the mouth. It contains mucins, water, organic salts, and ptylin. [NIH] Tetracycline: An antibiotic originally produced by Streptomyces viridifaciens, but used mostly in synthetic form. It is an inhibitor of aminoacyl-tRNA binding during protein synthesis. [NIH] Titre: The quantity of a substance required to produce a reaction with a given volume of another substance, or the amount of one substance required to correspond with a given amount of another substance. [EU] Treponema: A genus of microorganisms of the order spirochaetales, many of which are pathogenic and parasitic for man. [NIH] Virulence: The degree of pathogenicity within a group or species of microorganisms or viruses as indicated by case fatality rates and/or the ability of the organism to invade the tissues of the host. [NIH]

Books 115

CHAPTER 6. BOOKS ON LYME DISEASE Overview This chapter provides bibliographic book references relating to Lyme disease. You have many options to locate books on Lyme disease. The simplest method is to go to your local bookseller and inquire about titles that they have in stock or can special order for you. Some patients, however, feel uncomfortable approaching their local booksellers and prefer online sources (e.g. www.amazon.com and www.bn.com). In addition to online booksellers, excellent sources for book titles on Lyme disease include the Combined Health Information Database and the National Library of Medicine. Once you have found a title that interests you, visit your local public or medical library to see if it is available for loan.

Book Summaries: Federal Agencies The Combined Health Information Database collects various book abstracts from a variety of healthcare institutions and federal agencies. To access these summaries, go to http://chid.nih.gov/detail/detail.html. You will need to use the “Detailed Search” option. To find book summaries, use the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer. For the format option, select “Monograph/Book.” Now type “Lyme disease” (or synonyms) into the “For these words:” box. You will only receive results on books. You should check back periodically with this database which is updated every 3 months. The following is a typical result when searching for books on Lyme disease:

116 Lyme Disease

·

Sick and Tired of Feeling Sick and Tired: Living With Invisible Chronic Illness Source: New York, NY: W.W. Norton and Company, Inc. 2000. 306 p. Contact: Available from Lupus Foundation of America. 1300 Piccard Drive, Suite 200, Rockville, MD 20850-4303. (800) 558-0121 or (301) 6709292. Fax (301) 670-9486. Website: www.lupus.org/lupus. PRICE: $8.95 for 1-9 copies; $6.50 for 10-25 copies. ISBN 0393320650. Summary: This book offers hope and coping strategies to people who suffer from invisible chronic illnesses (ICIs) such as chronic fatigue and chronic pain. Part 1 focuses on the experience of having an ICI. Chapter 1 serves as an introduction to ICI. Chapter 2 describes some forms of ICI, including arthritis, Charcot-Marie-Tooth disease, chronic fatigue immune dysfunction syndrome, endometriosis, fibromyalgia, human immunodeficiency virus, inflammatory bowel disease, irritable bowel syndrome, lupus erythematosus, Lyme disease, migraine, multiple sclerosis, post polio syndrome, premenstrual syndrome, and thyroid illnesses. Chapter 3 explores the psychological consequences of ICI, focusing on self doubt, self dislike, uncertainty, fear of mental illness, fear of the course of illness, giving in to illness, interpersonal insecurity, loss of self esteem, guilt, and roller coaster feelings. Chapter 4 examines the dimensions of ICI and their psychological impact, focusing on the social acceptability of the illness, the clarity of diagnosis, and the potential severity of the illness. Chapters 5 through 8 deal with adjusting to and accepting a constant state of unwellness; seeking answers; consulting a doctor; and relating to family, friends, and colleagues. Part 2 focuses on coping with ICI. Chapters deal with living in the present, thinking clearly, handling irrational thinking, using imagery to confront irrational thinking, identifying one's life story and the role played in the story, getting and keeping the attention of the health care system, coping with ICI in the family, saying what one feels, hearing what is said, and managing the stress associated with ICI. The book includes a general reading list on illnesses and a list of illness associations. Numerous references.

·

Everything You Need To Know About Lyme Disease and Other TickBorne Disorders Source: Somerset, NJ: John Wiley and Sons, Inc. 1997. 256 p. Contact: Available from John Wiley and Sons, Inc. Distribution Center, 1 Wiley Drive, Somerset, NJ 08875-1272. (800) 225-5945 or (732) 469-4400. Fax (732) 302-2300. E-mail: [email protected]. Website: catalog.wiley.com. PRICE: $14.95 plus shipping and handling. Also

Books 117

available from Lyme Disease Foundation. 1 Financial Plaza, 18th Floor, Hartford, CT 06103. (800)886-LYME or (860) 525-2000. Fax (860) 525TICK. E-mail: [email protected]. Website: www.lyme.org. PRICE: $18.00; bulk orders available at cost. Summary: This book provides the general public and people who have Lyme disease with comprehensive information about this tick-borne illness. The book begins with a chapter on the public health threat posed by Lyme disease. This chapter provides an overview of progression, diagnosis, and treatment; an explanation of the science of Lyme disease; and a description of other tick-borne disorders. Chapter two discusses ticks' life cycle and method of feeding. Other topics include the forces that have converged to increase the threat of ticks, factors influencing the likelihood of becoming ill from a tick bite, and types of ticks. The next chapter presents significant events in the history of Lyme disease. Chapter four presents the signs and symptoms of localized and disseminated Lyme disease. The fifth chapter discusses the diagnosis of Lyme disease in terms of getting a diagnosis and undergoing antibody tests to detect Borrelia burgdorferi, as well as types of antibody and direct detection tests. Chapter six addresses treatment, focusing on choosing health professionals, taking antibiotics, persuading an insurer to pay for treatment, and obtaining emotional support. This is followed by a chapter that describes other tick-borne disorders, including babesiosis, ehrlichiosis, Rocky Mountain spotted fever, Colorado tick fever, tularemia, relapsing fever, Powassan encephalitis, and tick paralysis. Subsequent chapters provide guidelines on using proper equipment to remove a tick, protecting oneself and family members from ticks, and modifying property to create tick-free zones. Final chapters report on the promise of a vaccine for Lyme disease and discuss the risks of tick bites to animals. 6 appendixes, 28 figures, 1 table, and numerous references. ·

Lyme Disease: The Cause, the Cure, the Controversy Source: Baltimore, MD: Johns Hopkins University Press. 1996. 274 p. Contact: Johns Hopkins University Press, 2715 North Charles Street, Baltimore, MD 21218-4319. Summary: This book for the general public or individuals with Lyme disease presents a comprehensive discussion of what is known about Lyme disease. Chapters explain what Lyme disease is and how it is spread; describe the symptoms and consequences of Lyme disease; identify all of the diagnostic tests for Lyme disease and discuss the meaning of test results; examine proven and unproven treatments for Lyme disease, focusing on antibiotic therapy and alternative medicines; compare Lyme disease with other conditions, such as fibromyalgia and

118 Lyme Disease

chronic fatigue syndrome; discuss depression; and offer guidelines for preventing Lyme disease. Case reports of four individuals are used throughout the book to illustrate the varying course of Lyme disease in different individuals. A report demonstrates the problems confronting individuals who test negative for Lyme disease but are convinced that Lyme disease explains their symptoms. A list of resources is included. 7 figures and 3 photographs. ·

Guidelines for Perinatal Care Source: Guidelines for Perinatal Care; 3rd edition, 1992. Contact: American College of Obstetricians and Gynecologists, PO Box 96920, Washington, DC, 20090-6920, (202) 638-5577, http://www.acog.com. American Academy of Pediatrics, Department of Maternal Child and Adolescent Health, Committee on Pediatric AIDS, 141 NW Point Blvd, Elk Grove Village, IL, 60007-1098, (847) 434-4000, http://www.aap.org. Summary: This book chapter focuses on the clinical management of viral and bacterial perinatal infections. These include cytomegalovirus, herpes simplex, the human immunodeficiency virus (HIV), human papillomavirus, human parvovirus, rubella, varicella-zoster, group B streptococcal, listeriosis, syphilis, lyme disease, and chlamydia infection. For each of these infections, guidelines are provided on treatment and counseling during pregnancy, obstetric management, management of exposed newborns, nursery management, and early diagnosis. The section on HIV focuses on diagnostic criteria for adults, children, and infants; prevention; and management after delivery.

·

Essentials of Musculoskeletal Care. 2nd ed Source: Rosemont, IL: American Academy of Orthopaedic Surgeons (AAOS). 2001. 756 p. Contact: Available from American Academy of Orthopaedic Surgeons (AAOS). 6300 North River Road, Rosemont, IL 60018-4262. (800) 626-6726 (toll-free) or (847) 823-7186. Fax (800) 823-8025 (toll-free) or (847) 8238025. E-mail: [email protected]. Website: www.aaos.org. PRICE: $105.00 for nonmembers; $90.00 AAOS members; $80.00 for residents; plus shipping and handling. ISBN 0892032170. Summary: This book serves as a guide and easy reference to provide health professionals with information on the diagnosis and management of common musculoskeletal conditions. The book begins with a section on general orthopedics. This section presents information on the principles of evaluating and examining a patient with musculoskeletal

Books 119

complaints and discusses pharmacological and nonpharmacological modes of treatment. In addition, the section describes various musculoskeletal conditions, including amputations, rheumatoid arthritis, osteoarthritis, septic arthritis, compartment syndrome, crystalline deposition diseases, diffuse idiopathic skeletal hyperostosis, falls and other injuries, fibromyalgia syndrome, fractures, Lyme disease, osteomyelitis, osteoporosis, overuse syndromes, reflex sympathetic dystrophy and complex regional pain syndromes, seronegative spondyloarthropathies, sprains and strains, soft tissue and bone tumors, and venous thrombosis. This is followed by sections that deal with common conditions affecting the shoulder girdle, elbow and forearm, hand and wrist, hip and thigh, knee and lower leg, foot and ankle, and spine, including acute and chronic or repetitive injuries and degenerative, inflammatory, or idiopathic conditions. Information in these sections includes synonyms for and red flags associated with each condition; the definition, clinical symptoms, diagnosis, differential diagnosis, adverse outcomes, and treatment of the condition; diagnostic tests; and adverse treatment outcomes. The final section focuses on pediatric orthopedics. The book includes a glossary of ICD-9 codes, a list of common orthopedic terms and their definitions, and a subject index. Numerous figures and 36 tables. ·

Delicate Balance: Living Successfully with Chronic Illness Source: New York, NY: Plenum Press. 1998. 289 p. Contact: Available from Interstitial Cystitis Association (ICA). 51 Monroe Street, Suite 1402, Rockville, MD 20850. (301) 610-5300. Fax (301) 6105308. E-mail: [email protected]. Website: www.ichelp.org. PRICE: $22.00 plus shipping and handling. Summary: This book offers a look at the lives of people with chronic and largely invisible illnesses, such as lupus, Sjogren's syndrome, fibromyalgia, chronic fatigue syndrome, inflammatory bowel disorders (IBD), Lyme disease, interstitial cystitis, and multiple sclerosis. Instead of focusing on a specific illness, this book candidly examines the experience of living with chronic disease through in depth, personal interviews with patients, care providers, and family members. The author follows 21 individuals in the quest to find a comprehensive diagnosis; locate a capable and caring health care provider; research and try traditional or alternative treatments; make sense of their powerful emotions; strengthen relationships with family and friends; make significant career decisions; and reflect on how illness changes their overall lives. The book includes practical advice, including how to use the Internet for information and support, how to seek reasonable accommodations under the Americans

120 Lyme Disease

with Disabilities Act (ADA), how to apply for Social Security Disability Insurance, and how to make the most of the doctor patient relationship in an era of managed care. The author also examines some of the most current research on the mind body connection and its relation to chronic physical illness. The book concludes with a section of endnotes, a list of resources, a glossary of terms, and a subject index. ·

Safety and environmental health Source: Kent, OH: American School Health Association. [1993?]. ca. 50 pp. Contact: Available from Publications Department, American School Health Association, P.O. Box 708, Kent, OH 44240-0708. Telephone: (330) 678- 1601 / fax: (330) 678-4526 / e-mail: [email protected] / Web site: http://www.ashaweb.org. $8.75 members, $10.25 nonmembers; plus $3.00 shipping and handling. Summary: This American School Health Association topical package on safety and environmental health contains selected reprints from the 'Journal of School Health' from 1984 to 1992. The topics addressed in the articles include: a high school safety belt incentive program; the safety of lawn chemicals on school grounds; radon in schools; an earthquake preparedness program; sunscreens and skin cancer; evaluating pedestrian safety education materials for children ages five to nine; psychological health and well-being in school; Lyme disease; school bus safety; student accidents; and alcohol and drug use and automobile safety.

·

Oral and Cutaneous Manifestations of Hematogenously Disseminated Systemic Infections: A Monograph Source: Research Triangle Park, NC: Glaxo, Inc. 1993. 79 p. Contact: Available from Glaxo-Wellcome Education Resource Center. 5 Moore Drive, Research Triangle Park, NC 27709. (800) 824-2896. PRICE: Single copy free. Stock Number GVL251. Summary: This monograph describes oral and dermatologic manifestations resulting from systemic infections. Written as a continuing education tool for physicians, the monograph features 26 sections, each of which includes a description of dermatologic manifestations, other clinical features, laboratory findings, and epidemiologic factors. Diseases covered include AIDS, blastomycosis, candidiasis, coccidioidomycosis, cryptococcoses, erythema infectiousum (Fifth disease), gonococcemia, gram-negative bacterial sepsis, hand-foot-and-mouth disease, infectious mononucleosis, infective endocarditis, Kawasaki syndrome, leprosy,

Books 121

lyme disease, meningococcemia, Rocky Mountain spotted fever, roseola, rubella (German measles), rubeola (measles), scarlet fever, secondary (disseminated) syphilis, staphylococcal scalded skin syndrome, toxic shock syndrome, typhoid fever, varicella (chickenpox), and Vibrio vulnificus infection. Each section is illustrated with full-color photographs depicting patients with manifestations of the disease under consideration. The monograph includes a glossary of illustrations to help with diagnosis and classification. The monograph concludes with a selftest and instructions for receiving continuing medical education credits. A subject index is also included. 12 references.

Book Summaries: Online Booksellers Commercial Internet-based booksellers, such as Amazon.com and Barnes & Noble.com, offer summaries which have been supplied by each title’s publisher. Some summaries also include customer reviews. Your local bookseller may have access to in-house and commercial databases that index all published books (e.g. Books in PrintÒ). The following have been recently listed with online booksellers as relating to Lyme disease (sorted alphabetically by title; follow the hyperlink to view more details at Amazon.com): ·

Lyme Disease : Selected Articles from New England Journal of Medicine, Mmwr, and Massachusetts Medicine. (1987); ISBN: 0910133220; http://www.amazon.com/exec/obidos/ASIN/0910133220/icongroupin terna

·

Lyme Borreliosis : Proceedings of the Second International Symposium on Lyme Disease and Related Disorders, Vienna 1985 by Gerold Stanek, et al (1988); ISBN: 0895742306; http://www.amazon.com/exec/obidos/ASIN/0895742306/icongroupin terna

·

Lyme Disease and Related Disorders (Annals of the New York Academy of Sciences, Vol 539) by Jorge L. Benach, Edward M. Bosler (Editor) (1988); ISBN: 0897664744; http://www.amazon.com/exec/obidos/ASIN/0897664744/icongroupin terna

·

Lyme Disease : An Annotated Bibliography (1989); ISBN: 9992998512; http://www.amazon.com/exec/obidos/ASIN/9992998512/icongroupin terna

122 Lyme Disease

·

Lyme Borreliosis II (Zentralblatt Fur Bakteriologie Supplement 18) by Gerold Stanek (Editor) (1989); ISBN: 089574306X; http://www.amazon.com/exec/obidos/ASIN/089574306X/icongroupi nterna

·

Microorganisms : From Smallpox to Lyme Disease by Thomas D. Brock (Editor) (1989); ISBN: 0716720841; http://www.amazon.com/exec/obidos/ASIN/0716720841/icongroupin terna

·

Protect Yourself from Lyme Disease (1989); ISBN: 9993652539; http://www.amazon.com/exec/obidos/ASIN/9993652539/icongroupin terna

·

Protect Yourself from Lyme Disease : The New York Medical College Guide to Prevention, Detection, and Treatment by Diana Benzaia (1989); ISBN: 0440204372; http://www.amazon.com/exec/obidos/ASIN/0440204372/icongroupin terna

·

Lyme Disease by Elaine Landau (1990); ISBN: 0788190555; http://www.amazon.com/exec/obidos/ASIN/0788190555/icongroupin terna

·

Learning About Lyme Disease by Jo Ann Heltzel (1990); ISBN: 0963304100; http://www.amazon.com/exec/obidos/ASIN/0963304100/icongroupin terna

·

Lyme Disease the Great Imitator: How to Prevent and Cure It by Alvin Silverstein, et al (1990); ISBN: 0962365386; http://www.amazon.com/exec/obidos/ASIN/0962365386/icongroupin terna

·

Lyme Disease (1991); ISBN: 0962266906; http://www.amazon.com/exec/obidos/ASIN/0962266906/icongroupin terna

·

Lyme Disease and the Nervous System by Louis Reik (1991); ISBN: 0865773947; http://www.amazon.com/exec/obidos/ASIN/0865773947/icongroupin terna

·

Cicm 1 : 4 Lyme Disease by Fessia (1991); ISBN: 0812113381; http://www.amazon.com/exec/obidos/ASIN/0812113381/icongroupin terna

·

Lyme Disease : My Search for a Diagnosis by Linda Hanner, et al (1991); ISBN: 0962266914;

Books 123

http://www.amazon.com/exec/obidos/ASIN/0962266914/icongroupin terna ·

Lyme Disease : Molecular and Immunologic Approaches (Current Communications in Cell & Molecular Biology, Vol. 6) by Steven E. Schutzer (Editor) (1992); ISBN: 0879693770; http://www.amazon.com/exec/obidos/ASIN/0879693770/icongroupin terna

·

Ecology and Management of Tick and Lyme Disease at Fire Island National Seashore and Selected Eastern National Parks (Scientific Monograph, 92/20) by Howard S. Ginsberg (1992); ISBN: 9992743204; http://www.amazon.com/exec/obidos/ASIN/9992743204/icongroupin terna

·

Lyme Disease 1991 (1992); ISBN: 0963234803; http://www.amazon.com/exec/obidos/ASIN/0963234803/icongroupin terna

·

Aspects of Lyme Borreliosis by K. Weber, W. Borgdorfer (Editor) (1992); ISBN: 0387556281; http://www.amazon.com/exec/obidos/ASIN/0387556281/icongroupin terna

·

Lyme Disease 1991 : Patient Physician Perspectives from the U S and Canada by Lora Mermin (Editor) (1992); ISBN: 096323482X; http://www.amazon.com/exec/obidos/ASIN/096323482X/icongroupi nterna

·

Lyme Disease by Patricia K., MD Coyle (1993); ISBN: 1556643659; http://www.amazon.com/exec/obidos/ASIN/1556643659/icongroupin terna

·

Lyme Disease : A Mother's Perspective by Karen Angotti (1993); ISBN: 0963390236; http://www.amazon.com/exec/obidos/ASIN/0963390236/icongroupin terna

·

Ecology and Environmental Management of Lyme Disease by Howard S. Ginsberg (Editor) (1993); ISBN: 0813519284; http://www.amazon.com/exec/obidos/ASIN/0813519284/icongroupin terna

·

Lyme Disease (1993); ISBN: 9992643552; http://www.amazon.com/exec/obidos/ASIN/9992643552/icongroupin terna

124 Lyme Disease

·

Lyme Disease by Ronald L. Hoffman (1994); ISBN: 0879836172; http://www.amazon.com/exec/obidos/ASIN/0879836172/icongroupin terna

·

Lyme Borreliosis (NATO Asi Series A: Life Sciences, Vol 260) by John S. Axford, David H.E. Rees (Editor) (1994); ISBN: 0306446642; http://www.amazon.com/exec/obidos/ASIN/0306446642/icongroupin terna

·

Lyme Disease by Anderson (1995); ISBN: 0787215082; http://www.amazon.com/exec/obidos/ASIN/0787215082/icongroupin terna

·

Lyme Disease : The Cause, the Cure, the Controversy (Johns Hopkins Health Book) by Alan G. Barbour (1996); ISBN: 0801852242; http://www.amazon.com/exec/obidos/ASIN/0801852242/icongroupin terna

·

The Widening Circle: A Lyme Disease Pioneer Tells Her Story by Polly Murray (1996); ISBN: 0312140681; http://www.amazon.com/exec/obidos/ASIN/0312140681/icongroupin terna

·

Coping With Lyme Disease : A Practical Guide to Dealing With Diagnosis and Treatment by Denise Lang, et al (1997); ISBN: 0805047751; http://www.amazon.com/exec/obidos/ASIN/0805047751/icongroupin terna

·

Rabies, Lyme Disease, Hanta Virus : And Other Animal-Borne Human Diseases in the United States and Canada by E. Lendell Cockrum (1997); ISBN: 1555611389; http://www.amazon.com/exec/obidos/ASIN/1555611389/icongroupin terna

·

Lyme Disease -- The Untold Story by Dennis Lakin (1998); ISBN: 189062215X; http://www.amazon.com/exec/obidos/ASIN/189062215X/icongroupi nterna

·

Applied Neuropsychology : Special Issue : Neuropsychological Aspects of Lyme Disease : 1999 by Richard F. Kaplan (Editor) (1999); ISBN: 0805898174; http://www.amazon.com/exec/obidos/ASIN/0805898174/icongroupin terna

·

Surviving Lyme Disease Using Alternative Medicine by David A., Dr. Jernigan, D.C., B.S. Dr. David A. Jernigan (1999); ISBN: 0967462304; http://www.amazon.com/exec/obidos/ASIN/0967462304/icongroupin terna

Books 125

·

Lyme Borreliosis : Biology, Epidemiology, and Control by J. S. Gray (Editor), et al (2002); ISBN: 0851996329; http://www.amazon.com/exec/obidos/ASIN/0851996329/icongroupin terna

·

Lyme Disease (My Health) by Alvin Silverstein, et al (2002); ISBN: 0531165620; http://www.amazon.com/exec/obidos/ASIN/0531165620/icongroupin terna

The National Library of Medicine Book Index The National Library of Medicine at the National Institutes of Health has a massive database of books published on healthcare and biomedicine. Go to the following Internet site, http://locatorplus.gov/, and then select “Search LOCATORplus.” Once you are in the search area, simply type “Lyme disease” (or synonyms) into the search box, and select “books only.” From there, results can be sorted by publication date, author, or relevance. The following was recently catalogued by the National Library of Medicine:26 ·

Aspects of Lyme borreliosis. Author: K. Weber, W. Burgdorfer (eds.); coeditor, G. Schierz; Year: 1993; Berlin; New York: Springer-Verlag, c1993; ISBN: 3540556281 (alk. paper) http://www.amazon.com/exec/obidos/ASIN/3540556281/icongroupin terna

·

Biography of a germ. Author: Arno Karlen; Year: 2000; New York: Pantheon Books, c2000; ISBN: 0375401997 http://www.amazon.com/exec/obidos/ASIN/0375401997/icongroupin terna

·

Ecology and environmental management of lyme disease. Author: edited by Howard S. Ginsberg; Year: 1993; New Brunswick, NJ: Rutgers University Press, c1993; ISBN: 0813519284 (cloth)

In addition to LOCATORPlus, in collaboration with authors and publishers, the National Center for Biotechnology Information (NCBI) is adapting biomedical books for the Web. The books may be accessed in two ways: (1) by searching directly using any search term or phrase (in the same way as the bibliographic database PubMed), or (2) by following the links to PubMed abstracts. Each PubMed abstract has a “Books” button that displays a facsimile of the abstract in which some phrases are hypertext links. These phrases are also found in the books available at NCBI. Click on hyperlinked results in the list of books in which the phrase is found. Currently, the majority of the links are between the books and PubMed. In the future, more links will be created between the books and other types of information, such as gene and protein sequences and macromolecular structures. See http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Books.

26

126 Lyme Disease

http://www.amazon.com/exec/obidos/ASIN/0813519284/icongroupin terna ·

Ecology and management of ticks and lyme disease at Fire Island National Seashore and selected eastern national parks. Author: Howard S. Ginsberg; Year: 1992; Denver, CO: U.S. Dept. of the Interior, National Park Service, 1992

·

Handbook of Lyme borreliosis. Author: Wendy P. Feaga, ed; Year: 1991; Madison, Wis.: <STRONG>Lyme Resource Group of Madison/South Central Wisconsin, [1991]

·

Lyme borreliosis 1990: proceedings of the IV International Conference on Lyme Borreliosis, held in Stockholm, Sweden, June 18-21, 1990. Author: guest editors, Birgit Sköldenberg, Göran Stiernstedt; Year: 1991; Stockholm, Sweden: Almqvist & Wiksell International, [1991]

·

Lyme borreliosis and tick-borne encephalitis. Author: [Patrick Oschmann ... et al. (eds.)]; Year: 1999; Bremen, Germany: UNI-MED Verlag, c1999; ISBN: 3895994499

·

Lyme borreliosis II: based on the contribution to the First European Update on Lyme Borreliosis, Baden near Vienna 1987. Author: sponsored by the Hygiene Institute of the University of Vienna and by the Austrian Society for Hygiene, Microbiology, and Preventive; Year: 1989; Stuttgart; New York: G. Fischer Verlag, 1989; ISBN: 089574306X (U.S.) http://www.amazon.com/exec/obidos/ASIN/089574306X/icongroupi nterna

·

Lyme borreliosis. Author: edited by John S. Axford and David H.E. Rees; Year: 1994; New York: Plenum Press, c1994; ISBN: 0306446642 http://www.amazon.com/exec/obidos/ASIN/0306446642/icongroupin terna

·

Lyme disease: a pediatric perspective. Author: Lawrence S. Zemel; Year: 1992; Toronto, Ont.: Journal of Rheumatology Pub. Co., c1992

·

Lyme disease: a summary of the occupational health concern. Author: James A. Baxter; Year: 1989; Hamilton, Ont.: Canadian Centre for Occupational Health and Safety, [1989]; ISBN: 066013246X

·

Lyme disease: an annotated bibliography 1989. Author: Zemel, Lawrence S; Year: 1989; Bethesda, MD (Box AMS, Bethesda 20892): National Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse, 1989

·

Lyme disease: HHS programs and resources: report to congressional requesters. Author: United States General Accounting Office; Year: 2001; Washington, D.C.: The Office, [2001]

Books 127

·

Lyme disease: January 1985 through December 1988: 850 citations. Author: prepared by Kristine Scannell and Fritz P. Gluckstein; Year: 1989; Bethesda, Md.: U.S. Dept. of Health and Human Services, Public Health Service, National Institutes of Health, National Library of Medicine, Reference Section; Washington, D.C.: Sold by the Supt. of Docs., U.S. G.P.O., [1989]

·

Lyme disease: molecular and immunologic approaches. Author: edited by Steven E. Schutzer; Year: 1992; Plainview, N.Y.: Cold Spring Harbor Laboratory Press, 1992; ISBN: 0879693770 http://www.amazon.com/exec/obidos/ASIN/0879693770/icongroupin terna

·

Lyme disease: selected articles from the New England Journal of Medicine, MMWR, and Massachusetts medicine. Author: European Update on Lyme Borreliosis (1st: 1987: Baden, Austria); Year: 1987; Waltham, Mass.: Massachusetts Medical Society, 1987; ISBN: 0910133220 (pbk.) http://www.amazon.com/exec/obidos/ASIN/0910133220/icongroupin terna

·

Lyme disease: the cause, the cure, the controversy. Author: Alan G.Barbour; Year: 1996; Baltimore: Johns Hopkins University Press, 1996; ISBN: 0801852242 (alk. paper) http://www.amazon.com/exec/obidos/ASIN/0801852242/icongroupin terna

·

Lyme disease 1991: patient. Author: physician perspectives from the U.S. & Canada / Lora Mermin, editor; Year: 1992; Madison, WI: Education Project, Inc., c1992; ISBN: 096323482X (pbk.) http://www.amazon.com/exec/obidos/ASIN/096323482X/icongroupi nterna

·

Lyme disease and related disorders. Author: edited by Jorge L. Benach and Edward M. Bosler; Year: 1988; New York, N.Y.: New York Academy of Sciences, 1988; ISBN: 0897664744 http://www.amazon.com/exec/obidos/ASIN/0897664744/icongroupin terna

·

Lyme disease and the nervous system. Author: Louis Reik, Jr; Year: 1991; New York: Thieme Medical Publishers, 1991; ISBN: 0865773947 (TMP) http://www.amazon.com/exec/obidos/ASIN/0865773947/icongroupin terna

·

Lyme disease. Author: Karlen, Arno; Year: 1990; New York, N.Y.: American Council on Science and Health, 1990

128 Lyme Disease

·

Lyme disease. Author: [edited by] Patricia K. Coyle; Year: 1993; St. Louis: Mosby Year Book, c1993; ISBN: 1556643659 http://www.amazon.com/exec/obidos/ASIN/1556643659/icongroupin terna

·

Lyme disease. Author: [edited by] Daniel W. Rahn, Janine Evans; Year: 1998; Philadelphia, Pa.: American College of Physicians, c1998; ISBN: 0943126584 (alk. paper) http://www.amazon.com/exec/obidos/ASIN/0943126584/icongroupin terna

·

Microorganisms: from smallpox to Lyme disease: readings from Scientific American magazine. Author: edited by Thomas D. Brock; Year: 1990; New York: Freeman, c1990; ISBN: 0716720841 http://www.amazon.com/exec/obidos/ASIN/0716720841/icongroupin terna

·

Pediatric rheumatology. Author: [edited by] Jerry C. Jacobs; Year: 1986; Thorofare, NJ: Slack, c1986

·

Proceedings of the Second National Conference on Serologic Diagnosis of Lyme Disease: October 27-29, 1994, Dearborn, Michigan; sponsors, Association of State and Territorial Public Health Laboratory Directors, U.S. Centers for Disease Control and Preven. Author: National Conference on Serologic Diagnosis of Lyme Disease (2nd: 1994: Dearborn, Mich.); Year: 1994; Washington, D.C.: The Association, [1994?]

·

Report of a WHO Workshop on Lyme Borreliosis: Piestany, Slovakia, 6 October 1993. Author: WHO Workshop on Lyme Borreliosis (1993: Piestany, Slovakia); Year: 1993; Geneva: World Health Organization, [1993]

·

Report of WHO Workshop on Lyme Borreliosis Diagnosis and Surveillance: Warsaw, Poland, 20-22 June 1995. Author: National Institute of Hygiene, Ministry of Health, Poland [and] World Health Organization, Veterinary Public Health Unit; Year: 1995; [Geneva]: World Health Organization, [1995]

·

Western blot assay for antibodies to Borrelia burgdorferi: approved guideline. Author: Alan G. Barbour ... [et al.]; Year: 2000; Wayne, Pa.: NCCLS, c2000; ISBN: 1562384155

·

WHO Workshop on Lyme Borreliosis Diagnosis and Surveillance: Warsaw, Poland, 20-22 June 1995. Author: WHO Workshop on Lyme Borreliosis Diagnosis and Surveillance (1995: Warsaw, Poland); Year: 1995; [Geneva]: World Health Organization, Veterinary Public Health Unit, c1995

Books 129

Chapters on Lyme Disease Frequently, Lyme disease will be discussed within a book, perhaps within a specific chapter. In order to find chapters that are specifically dealing with Lyme disease, an excellent source of abstracts is the Combined Health Information Database. You will need to limit your search to book chapters and Lyme disease using the “Detailed Search” option. Go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. To find book chapters, use the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer, and the format option “Book Chapter.” By making these selections and typing in “Lyme disease” (or synonyms) into the “For these words:” box, you will only receive results on chapters in books. The following is a typical result when searching for book chapters on Lyme disease: ·

Section One: General Orthopaedics Source: in Greene, W.B., Ed. Essentials of Musculoskeletal Care. 2nd ed. Rosemont, IL: American Academy of Orthopaedic Surgeons (AAOS). 2001. p. 1-102. Contact: Available from American Academy of Orthopaedic Surgeons (AAOS). 6300 North River Road, Rosemont, IL 60018-4262. (800) 626-6726 (toll-free) or (847) 823-7186. Fax (800) 823-8025 (toll-free) or (847) 8238025. E-mail: [email protected]. Website: www.aaos.org. PRICE: $105.00 for nonmembers; $90.00 AAOS members; $80.00 for residents; plus shipping and handling. ISBN 0892032170. Summary: This section of a book on musculoskeletal care provides health professionals with an overview of general orthopedics. The section presents information on the principles of evaluating and examining a patient presenting with musculoskeletal problems, focusing on inspection, palpation, range of motion, muscle testing, and motor and sensory evaluation. This is followed by a description of types of lower extremity amputations and a discussion of the use of canes, crutches, and walkers. In addition, the section provides an overview of conditions that affect multiple joints or multiple regions and conditions that have systemic effects, including rheumatoid arthritis, osteoarthritis (OA), septic arthritis, compartment syndrome, crystalline deposition diseases, diffuse idiopathic skeletal hyperostosis, falls and other injuries, fibromyalgia syndrome, fractures, Lyme disease, osteomyelitis, osteoporosis, overuse syndromes, reflex sympathetic dystrophy and complex regional pain syndromes, seronegative spondyloarthropathies, sprains and strains, soft tissue and bone tumors, and venous thrombosis. Information includes synonyms for and red flags associated with each

130 Lyme Disease

condition; the definition, clinical symptoms, diagnosis, differential diagnosis, adverse outcomes, and treatment of the condition; diagnostic tests; and adverse treatment outcomes. Other topics include corticosteroid injections, imaging principles and techniques, nonorganic symptoms and signs, nonsteroidal antiinflammatory drugs, alternative therapies for OA, rehabilitation principles and therapeutic modalities, splinting techniques, and sports medicine principles. 27 figures and 16 tables. ·

Psychiatric Issues in Rheumatology Source: in Maddison, P.J.; et al., Eds. Oxford Textbook of Rheumatology. Volume 1. New York, NY: Oxford University Press, Inc. 1993. p. 188-196. Contact: Available from Oxford University Press, Inc., New York, NY. Summary: This chapter for health professionals focuses on the recognition and treatment of psychiatric disorders that occur among individuals with rheumatic diseases. The topic of psycho neuroimmunology is discussed. The psychiatric manifestations of various rheumatic diseases are described, including those of systemic lupus erythematosus, Sjogren's syndrome, rheumatoid arthritis, systemic vasculitides, Lyme disease, and juvenile chronic arthritis. The psychiatric side effects of corticosteriods, cyclosporin A, antimalarials, and nonsteroidal anti-inflammatory drugs are highlighted. Strategies for managing depression with antidepressant medications and for managing anxiety disorders and sleep disturbances are also presented. 59 references and 8 tables.

·

Common Infections and Inflammations and Other Conditions Source: in Sataloff, R.T., ed. Professional Voice: The Science and Art of Clinical Care. 2nd ed. San Diego, CA: Singular Publishing Group, Inc. 1997. p. 429-439. Contact: Available from Singular Publishing Group, Inc. 401 West 'A' Street, Suite 325, San Diego, CA 92101-7904. (800) 521-8545 or (619) 2386777. Fax (800) 774-8398 or (619) 238-6789. E-mail: [email protected]. Website: www.singpub.com. PRICE: $325.00 plus shipping and handling. ISBN: 1565937287. Summary: This chapter, from a book on the clinical care of the professional voice, reviews common infections and inflammations and other conditions. Topics include upper respiratory tract infection without laryngitis, tonsillitis, sinusitis, laryngitis with serious vocal fold injury, laryngitis without serious vocal fold damage, infection in the lower respiratory tract and elsewhere, Lyme disease, AIDS, and systemic

Books 131

diseases that may affect the voice. The author concludes by reminding readers that laryngeal manifestations of many systemic diseases may cause voice changes that cause the patient to seek medical attention for the first time. 1 figure. 48 references. ·

Systemic Disorders Source: in Blakley, B.W.; Siegel, M.E. Feeling Dizzy: Understanding and Treating Dizziness, Vertigo, and Other Balancing Disorders. New York, NY: Macmillan Publishing. 1995. p. 129-144. Contact: Available from Macmillan Publishing. 201 West 103rd Street, Indianapolis, IN 46290. (800) 428-5331; Fax (800) 882-8583. PRICE: $21.95 plus shipping and handling. ISBN: 0028600096. Summary: This chapter is from a layperson's guide to vertigo, imbalance, fainting, and other balance disorders. This chapter describes the role of systemic disorders in vestibular problems. Topics covered include cardiovascular diseases, arrythmia, and valve problems; bacterial and viral diseases including herpes zoster, tuberculosis, syphilis, meningitis, encephalitis, and Lyme disease; connective tissue and arthritic problems; blood disorders including anemia, sickle-cell anemia, leukemia, and polycythemia; diabetes mellitus; chronic kidney disease; thyroid disorders; allergies; temporomandibular joint disorders; medications that can cause dizziness; and other factors including malnutrition and pollution. For each disorder discussed, the authors consider symptoms, role in causing dizziness, diagnosis, etiology, natural course, and treatment options.

·

Infections Source: in Kwon, P.H. and Laskin, D.M. Clinician's Manual of Oral and Maxillofacial Surgery. Chicago, IL: Quintessence Publishing Co, Inc. 2001. p. 348-365. Contact: Available from Quintessence Publishing Co, Inc. 551 Kimberly Drive, Carol Stream, IL 60188-9981. (800) 621-0387 or (630) 682-3223. Fax (630) 682-3288. E-mail: [email protected]. Website: www.quintpub.com. PRICE: $58.00 plus shipping and handling. ISBN: 0867153962. Summary: This chapter on infections is from a spiral-bound handbook that offers quick reference information to the oral and maxillofacial surgeon. The outline and chart-based format is designed to offer quick access to information that may be needed in situations that do not allow time for a leisurely perusal of textbooks and journals. The introduction of the chapter stresses that infections should be treated promptly and aggressively to avoid the following complications: spread to potential

132 Lyme Disease

fascial (connective tissue) and airway compromise, orbital and intracranial spread, spread into the neck with large vessel complications, septic shock from gram-negative organisms, loss of bone and teeth, and scarring and sinus tracts of fistulae with facial disfigurement. The chapter then covers the initial evaluation, the diagnostic workup, culture and antibiotic sensitivity testing, principles of infection management, surgical management, principles of incision and drainage, infectious clinical syndromes, special orofacial infections (actinomycosis, mycotic infections, Lyme disease, tuberculosis, syphilis, herpes virus infections), and considerations in the pregnant or lactating patient with infections. 3 tables. ·

Musculoskeletal Disorders Source: in Scully, C. and Cawson, R.A. Medical Problems in Dentistry. 4th ed. Woburn, MA: Butterworth-Heinemann. 1998. p. 310-335. Contact: Available from Butterworth-Heinemann. 225 Wildwood Avenue, Woburn, MA 01801-2041. (800) 366-2665 or (781) 904-2500. Fax (800) 446-6520 or (781) 933-6333. E-mail: [email protected]. Website: www.bh.com. PRICE: $110.00. ISBN: 0723610568. Summary: This chapter on musculoskeletal disorders is from a text that covers the general medical and surgical conditions relevant to the oral health care sciences. The authors note that the jaws and temporomandibular joints are part of the skeletal system, but are rarely involved by systemic disease and few skeletal diseases affect the management of the dental patient directly. Muscle disorders are relatively uncommon and involvement of the masticatory (chewing) and facial muscles is not necessarily a prominent feature. However, for patients with musculoskeletal disease, access to the dental clinic or getting into or out of the chair may be difficult. Topics include genetic skeletal diseases, osteogenesis imperfecta, achondroplasia, cleidocranial dysplasia, osteopetrosis (Albers Schonberg disease), Marfan's syndrome, Ehlers Danlos syndrome, diseases of calcium metabolism and bone, rickets and osteomalacia, osteoporosis, William's syndrome, tumoral calcinosis, fibrous dysplasia, Paget's disease of bone (osteitis deformans), osteoarthritis, rheumatoid arthritis, Felty's syndrome, juvenile rheumatoid arthritis (childhood polyarthritis), psoriatic arthritis, Lyme disease, gout, ankylosing spondylitis, Reiter's disease, prosthetic joint replacements, genetic myopathies, polymyositis and dermatomyositis, and cranial arteritis and polymyalgia rhematica. For each condition, the authors discuss general aspects, diagnosis and management issues, dental aspects, and patient care strategies. The chapter includes a summary of the points covered. 4 figures. 10 tables. 61 references.

Books 133

General Home References In addition to references for Lyme disease, you may want a general home medical guide that spans all aspects of home healthcare. The following list is a recent sample of such guides (sorted alphabetically by title; hyperlinks provide rankings, information, and reviews at Amazon.com): · Encyclopedia of Skin and Skin Disorders (The Facts on File Library of Health and Living) by Carol Turkington, Jeffrey S. Dover; Hardcover - 448 pages, 2nd edition (June 2002), Facts on File, Inc.; ISBN: 0816047766; http://www.amazon.com/exec/obidos/ASIN/0816047766/icongroupinterna · Your Skin from A to Z by Jerome Z. Litt, M.D.; Paperback (March 2002), Barricade Books; ISBN: 1569802165; http://www.amazon.com/exec/obidos/ASIN/1569802165/icongroupinterna · American College of Physicians Complete Home Medical Guide (with Interactive Human Anatomy CD-ROM) by David R. Goldmann (Editor), American College of Physicians; Hardcover - 1104 pages, Book & CD-Rom edition (1999), DK Publishing; ISBN: 0789444127; http://www.amazon.com/exec/obidos/ASIN/0789444127/icongroupinterna · The American Medical Association Guide to Home Caregiving by the American Medical Association (Editor); Paperback - 256 pages 1 edition (2001), John Wiley & Sons; ISBN: 0471414093; http://www.amazon.com/exec/obidos/ASIN/0471414093/icongroupinterna · Anatomica : The Complete Home Medical Reference by Peter Forrestal (Editor); Hardcover (2000), Book Sales; ISBN: 1740480309; http://www.amazon.com/exec/obidos/ASIN/1740480309/icongroupinterna · The HarperCollins Illustrated Medical Dictionary : The Complete Home Medical Dictionary by Ida G. Dox, et al; Paperback - 656 pages 4th edition (2001), Harper Resource; ISBN: 0062736469; http://www.amazon.com/exec/obidos/ASIN/0062736469/icongroupinterna · Mayo Clinic Guide to Self-Care: Answers for Everyday Health Problems by Philip Hagen, M.D. (Editor), et al; Paperback - 279 pages, 2nd edition (December 15, 1999), Kensington Publishing Corp.; ISBN: 0962786578; http://www.amazon.com/exec/obidos/ASIN/0962786578/icongroupinterna · The Merck Manual of Medical Information : Home Edition (Merck Manual of Medical Information Home Edition (Trade Paper) by Robert Berkow (Editor), Mark H. Beers, M.D. (Editor); Paperback - 1536 pages (2000), Pocket Books; ISBN: 0671027263; http://www.amazon.com/exec/obidos/ASIN/0671027263/icongroupinterna

134 Lyme Disease

Vocabulary Builder Actinomycosis: Infections with bacteria of the genus actinomyces. [NIH] Anemia: A reduction in the number of circulating erythrocytes or in the quantity of hemoglobin. [NIH] Anxiety: The unpleasant emotional state consisting of psychophysiological responses to anticipation of unreal or imagined danger, ostensibly resulting from unrecognized intrapsychic conflict. Physiological concomitants include increased heart rate, altered respiration rate, sweating, trembling, weakness, and fatigue; psychological concomitants include feelings of impending danger, powerlessness, apprehension, and tension. [EU] Blastomycosis: A fungal infection that may appear in two forms: 1) a primary lesion characterized by the formation of a small cutaneous nodule and small nodules along the lymphatics that may heal within several months; and 2) chronic granulomatous lesions characterized by thick crusts, warty growths, and unusual vascularity and infection in the middle or upper lobes of the lung. [NIH] Calcinosis: Pathologic deposition of calcium salts in tissues. [NIH] Candidiasis: Infection with a fungus of the genus Candida. It is usually a superficial infection of the moist cutaneous areas of the body, and is generally caused by C. albicans; it most commonly involves the skin (dermatocandidiasis), oral mucous membranes (thrush, def. 1), respiratory tract (bronchocandidiasis), and vagina (vaginitis). Rarely there is a systemic infection or endocarditis. Called also moniliasis, candidosis, oidiomycosis, and formerly blastodendriosis. [EU] Chlamydia: A genus of the family chlamydiaceae whose species cause a variety of diseases in vertebrates including humans, mice, and swine. Chlamydia species are gram-negative and produce glycogen. The type species is chlamydia trachomatis. [NIH] Cytomegalovirus: A genus of the family herpesviridae, subfamily betaherpesvirinae, infecting the salivary glands, liver, spleen, lungs, eyes, and other organs, in which they produce characteristically enlarged cells with intranuclear inclusions. Infection with Cytomegalovirus is also seen as an opportunistic infection in AIDS. [NIH] Dysplasia: Abnormality of development; in pathology, alteration in size, shape, and organization of adult cells. [EU] Dystrophy: Any disorder arising from defective or faulty nutrition, especially the muscular dystrophies. [EU] Endocarditis: Exudative and proliferative inflammatory alterations of the endocardium, characterized by the presence of vegetations on the surface of

Books 135

the endocardium or in the endocardium itself, and most commonly involving a heart valve, but sometimes affecting the inner lining of the cardiac chambers or the endocardium elsewhere. It may occur as a primary disorder or as a complication of or in association with another disease. [EU] Endometriosis: A condition in which tissue more or less perfectly resembling the uterine mucous membrane (the endometrium) and containing typical endometrial granular and stromal elements occurs aberrantly in various locations in the pelvic cavity; called also adenomyosis externa and endometriosis externa. [EU] Herpes: Any inflammatory skin disease caused by a herpesvirus and characterized by the formation of clusters of small vesicles. When used alone, the term may refer to herpes simplex or to herpes zoster. [EU] Hyperostosis: Hypertrophy of bone; exostosis. [EU] Idiopathic: Of the nature of an idiopathy; self-originated; of unknown causation. [EU] Interstitial: Pertaining to or situated between parts or in the interspaces of a tissue. [EU] Laryngitis: Inflammation of the larynx, a condition attended with dryness and soreness of the throat, hoarseness, cough and dysphagia. [EU] Leprosy: A chronic granulomatous infection caused by mycobacterium leprae. The granulomatous lesions are manifested in the skin, the mucous membranes, and the peripheral nerves. Two polar or principal types are lepromatous and tuberculoid. [NIH] Microbiology: The study of microorganisms such as fungi, bacteria, algae, archaea, and viruses. [NIH] Orthopedics: A surgical specialty which utilizes medical, surgical, and physical methods to treat and correct deformities, diseases, and injuries to the skeletal system, its articulations, and associated structures. [NIH] Osteogenesis: The histogenesis of bone including ossification. It occurs continuously but particularly in the embryo and child and during fracture repair. [NIH] Osteomalacia: A condition marked by softening of the bones (due to impaired mineralization, with excess accumulation of osteoid), with pain, tenderness, muscular weakness, anorexia, and loss of weight, resulting from deficiency of vitamin D and calcium. [EU] Osteomyelitis: Inflammation of bone caused by a pyogenic organism. It may remain localized or may spread through the bone to involve the marrow, cortex, cancellous tissue, and periosteum. [EU] Osteopetrosis:

Excessive formation of dense trabecular bone leading to

136 Lyme Disease

pathological fractures, osteitis, splenomegaly with infarct, anemia, and extramedullary hemopoiesis. [NIH] Palpation: Application of fingers with light pressure to the surface of the body to determine consistence of parts beneath in physical diagnosis; includes palpation for determining the outlines of organs. [NIH] Papillomavirus: A genus of papovaviridae causing proliferation of the epithelium, which may lead to malignancy. A wide range of animals are infected including humans, chimpanzees, cattle, rabbits, dogs, and horses. [NIH]

Parvovirus: A genus of the family parvoviridae, subfamily parvovirinae, infecting a variety of vertebrates including humans. Parvoviruses are responsible for a number of important diseases but also can be nonpathogenic in certain hosts. The type species is mice minute virus. [NIH] Perinatal: Pertaining to or occurring in the period shortly before and after birth; variously defined as beginning with completion of the twentieth to twenty-eighth week of gestation and ending 7 to 28 days after birth. [EU] Polyarthritis: An inflammation of several joints together. [EU] Radon: Radon. A naturally radioactive element with atomic symbol Rn, atomic number 86, and atomic weight 222. It is a member of the noble gas family and released during the decay of radium and found in soil. There is a link between exposure to radon and lung cancer. [NIH] Reflex: 1; reflected. 2. a reflected action or movement; the sum total of any particular involuntary activity. [EU] Rickets: A condition caused by deficiency of vitamin D, especially in infancy and childhood, with disturbance of normal ossification. The disease is marked by bending and distortion of the bones under muscular action, by the formation of nodular enlargements on the ends and sides of the bones, by delayed closure of the fontanelles, pain in the muscles, and sweating of the head. Vitamin D and sunlight together with an adequate diet are curative, provided that the parathyroid glands are functioning properly. [EU] Rubella: An acute, usually benign, infectious disease caused by a togavirus and most often affecting children and nonimmune young adults, in which the virus enters the respiratory tract via droplet nuclei and spreads to the lymphatic system. It is characterized by a slight cold, sore throat, and fever, followed by enlargement of the postauricular, suboccipital, and cervical lymph nodes, and the appearances of a fine pink rash that begins on the head and spreads to become generalized. Called also German measles, roetln, röteln, and three-day measles, and rubeola in French and Spanish. [EU] Sinusitis: Inflammation of a sinus. The condition may be purulent or nonpurulent, acute or chronic. Depending on the site of involvement it is known as ethmoid, frontal, maxillary, or sphenoid sinusitis. [EU]

Books 137

Sympathetic: 1. pertaining to, caused by, or exhibiting sympathy. 2. a sympathetic nerve or the sympathetic nervous system. [EU] Thrombosis: The formation, development, or presence of a thrombus. [EU] Tonsillitis: Inflammation of the tonsils, especially the palatine tonsils. [EU] Topical: Pertaining to a particular surface area, as a topical anti-infective applied to a certain area of the skin and affecting only the area to which it is applied. [EU] Tuberculosis: Any of the infectious diseases of man and other animals caused by species of mycobacterium. [NIH] Tularemia: A plague-like disease of rodents, transmissible to man. It is caused by francisella tularensis and is characterized by fever, chills, headache, backache, and weakness. [NIH] Vertigo: An illusion of movement; a sensation as if the external world were revolving around the patient (objective vertigo) or as if he himself were revolving in space (subjective vertigo). The term is sometimes erroneously used to mean any form of dizziness. [EU] Vestibular: Pertaining to or toward a vestibule. In dental anatomy, used to refer to the tooth surface directed toward the vestibule of the mouth. [EU] Vibrio: A genus of vibrionaceae, made up of short, slightly curved, motile, gram-negative rods. Various species produce cholera and other gastrointestinal disorders as well as abortion in sheep and cattle. [NIH]

Multimedia 139

CHAPTER 7. MULTIMEDIA ON LYME DISEASE Overview Information on Lyme disease can come in a variety of formats. Among multimedia sources, video productions, slides, audiotapes, and computer databases are often available. In this chapter, we show you how to keep current on multimedia sources of information on Lyme disease. We start with sources that have been summarized by federal agencies, and then show you how to find bibliographic information catalogued by the National Library of Medicine. If you see an interesting item, visit your local medical library to check on the availability of the title.

Video Recordings Most diseases do not have a video dedicated to them. If they do, they are often rather technical in nature. An excellent source of multimedia information on Lyme disease is the Combined Health Information Database. You will need to limit your search to “video recording” and “Lyme disease” using the “Detailed Search” option. Go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. To find video productions, use the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer, and the format option “Videorecording (videotape, videocassette, etc.).” By making these selections and typing “Lyme disease” (or synonyms) into the “For these words:” box, you will only receive results on video productions. The following is a typical result when searching for video recordings on Lyme disease:

140 Lyme Disease

·

AIDS and Other Epidemics Contact: Films for the Humanities and Sciences, PO Box 2053, Princeton, NJ, 08543, (800) 257-5126. Summary: This videorecording discusses AIDS and other epidemics including bubonic plague, black death, influenza, polio, small pox, malaria, and yellow fever. Recent epidemics include AIDS, lyme disease and the rising spread of tuberculosis (TB). The videorecording states that prevention needs to be emphasized and implemented when addressing these diseases.

Bibliography: Multimedia on Lyme Disease The National Library of Medicine is a rich source of information on healthcare-related multimedia productions including slides, computer software, and databases. To access the multimedia database, go to the following Web site: http://locatorplus.gov/. Select “Search LOCATORplus.” Once in the search area, simply type in Lyme disease (or synonyms). Then, in the option box provided below the search box, select “Audiovisuals and Computer Files.” From there, you can choose to sort results by publication date, author, or relevance. The following multimedia has been indexed on Lyme disease. For more information, follow the hyperlink indicated: ·

Army healthwatch. Source: a joint production of Army Public Affairs, Army Medical Command, U.S. Army Center for Health Promotion and Preventive Medicine; Year: 2000; Format: Videorecording; [Alexandria, Va.]: Soldiers Radio and Television, 2000

·

Clinical spectrum & immunodiagnostic testing for lyme disease. Source: [presented by] Marshfield Video Network, in cooperation with Marshfield Clinic, St. Joseph's Hospital and Marshfield Medical Research Foundation; Year: 1988; Format: Videorecording; Marshfield, WI: The Clinic, c1988

·

Cold zone : a convergence of tick-transmitted diseases. Source: Marshfield Clinic, Saint Joseph's Hospital; a presentation of the Marshfield Video Network; Year: 1996; Format: Videorecording; [Marshfield, WI: The Network, 1996]

·

Controlled low-energy diets : pertinent facts and issues. Source: with John M. Amatruda, Dean H. Lockwood, and Rena R. Wing; Year: 1988; Format: Videorecording; Secaucus, N.J.: Network for Continuing Medical Education, c1988

Multimedia 141

·

Cutaneous manifestations of Lyme disease. Source: Donald C. Abele; Year: 1996; Format: Videorecording; Secaucus, N.J.: Network for Continuing Medical Education, c1996

·

Early signs of lyme disease. Source: [presented by] Marshfield Video Network, in cooperation with Marshfield Clinic, St. Joseph's Hospital [and] Marshfield Medical Research Foundation; Year: 1988; Format: Videorecording; Marshfield, WI: Marshfield Clinic, c1988

·

Elucidation of Lyme arthritis. Source: Medical Arts and Photography Branch; Year: 1999; Format: Videorecording; [Bethesda, Md.: National Institutes of Health, 1999]

·

Epidemics and the environment. Source: a presentation of Films for the Humanities & Sciences; a production of the Economic Development Institute; Year: 1998; Format: Videorecording; Princeton, N.J.: Films for the Humanities & Sciences, c1998

·

Infectious diseases . Year: 1998; Format: Electronic resource; [Boston, Mass.?]: HealthStream, 1998

·

Late manifestations of lyme disease. Source: [presented by] Marshfield Video Network, in cooperation with Marshfield Clinic, St. Joseph's Hospital, and Marshfield Medical Research Foundation; Year: 1988; Format: Videorecording; Marshfield, WI: The Clinic, c1988

·

Lyme disease : 1989 update. Source: [presented by] Marshfield Clinic, Saint Joseph's Hospital [and] Marshfield Medical Research Foundation; Year: 1989; Format: Videorecording; Marshfield, WI: Marshfield Regional Video Network, [1989]

·

Lyme disease : a world wide public health problem. Year: 1992; Format: Electronic resource; Chapel Hill, NC: Health Sciences Consortium, c1992

·

Lyme disease : danger in the grass. Source: [presented by] ABC News; Year: 1989; Format: Videorecording; [New York, N.Y.: ABC, 1989]

·

Lyme disease : detection and treatment. Source: with Raymond J. Dattwyler and Benjamin Luft; Year: 1988; Format: Videorecording; Secaucus, N.J.: Network for Continuing Medical Education, c1988

·

Lyme disease : the great imitator. Source: produced by Agromedicine Program, Clemson University/Medical University of South Carolina and the Health Communications Network, Medical University of South Carolina; Year: 1990; Format: Videorecording; Charleston, S.C.: MUSCHCN, c1990

·

Lyme disease : what you need to know. Source: Centers for Disease Control (CDC) [and] Photo Researchers, Inc; Year: 1990; Format: Videorecording; [United States?]: Midnight of Prods., c1990

142 Lyme Disease

·

Lyme disease . Year: 1994; Format: Electronic resource; Secaucus, N.J.: Network for Continuing Medical Education, c1988

·

Lyme disease and concomitant tick-borne infections. Source: Benjamin J. Luft; Year: 1997; Format: Videorecording; Secaucus, N.J.: Network for Continuing Medical Education, c1997

·

Lyme disease in rural America. Source: a presentation of Marshfield Clinic, Cooperative Extension, University of Wisconsin--Extension, and Office of Outreach Development, University of Wisconsin--Madison; Year: 1991; Format: Videorecording; Marshfield, WI: The Clinic and Board of Regents, University of Wisconsin System, c1991

·

Lyme disease. Source: Allen C. Steere, Jr; Year: 1994; Format: Videorecording; [Bethesda, MD: National Institutes of Health, 1994]

·

Lyme disease. Source: a presentation of the Office of Clinical Center Communications; produced by Medical Arts and Photography Branch; Year: 1990; Format: Videorecording; [Bethesda, Md.]: National Institutes of Health, 1990

·

Lyme disease. Source: [presented by] Marshfield Video Network, in cooperation with Marshfield Medical Research Foundation, Marshfield Clinic, St. Joseph's Hospital; Year: 1987; Format: Videorecording; Secaucus, N.J.: Network for Continuing Medical Education, c1988

·

Lyme Seminar for Physicians : Holy Cross Hospital, June 29, 1991. Source: [presented by] the Maryland Lyme Support Group; Year: 1991; Format: Videorecording; Ellicott City, MD: The Group, [1991]

·

Lymenet Newsletter . Year: 9999; Format: Electronic resource; Bethlehem Pa Marc C. Gabriel

·

Molecular genetics of the lyme disease spirochete : teaching a new bug old tricks. Source: Office of Research Services, Medical Arts and Photography Branch; Year: 2002; Format: Videorecording; Secaucus, N.J.: Network for Continuing Medical Education, c1988

·

Ocular pathology . Year: 1996; Format: Electronic resource; London; Baltimore: Mosby, 1996

·

Ounce of prevention : keeps the germs away. Source: Centers for Disease Control and Prevention; produced by Public Health Practice Program Office, Division of Media and Training Services; Year: 1998; Format: Videorecording; [Atlanta, Ga.]: The Centers, [1998]

·

Special considerations in lyme disease. Source: [presented by] Marshfield Video Network, in cooperation with Marshfield Clinic, St. Joseph's Hospital, and Marshfield Medical Research Foundation; Year: 1988; Format: Videorecording; Marshfield, WI: The Clinic, c1988

Multimedia 143

·

Tick-borne diseases : non-lyme vectors. Source: Robert Brent Craven; Year: 1993; Format: Videorecording; Secaucus, N.J.: Network for Continuing Medical Education, 1993

·

Topical vitamin C as protection against UV exposure : a preliminary report. Source: Sheldon R. Pinnell; Year: 1996; Format: Videorecording; Secaucus, N.J.: Network for Continuing Medical Education, c1996

Vocabulary Builder Concomitant: Accompanying; accessory; joined with another. [EU] Influenza: An acute viral infection involving the respiratory tract. It is marked by inflammation of the nasal mucosa, the pharynx, and conjunctiva, and by headache and severe, often generalized, myalgia. [NIH]

Periodicals and News 145

CHAPTER 8. PERIODICALS AND NEWS ON LYME DISEASE Overview Keeping up on the news relating to Lyme disease can be challenging. Subscribing to targeted periodicals can be an effective way to stay abreast of recent developments on Lyme disease. Periodicals include newsletters, magazines, and academic journals. In this chapter, we suggest a number of news sources and present various periodicals that cover Lyme disease beyond and including those which are published by patient associations mentioned earlier. We will first focus on news services, and then on periodicals. News services, press releases, and newsletters generally use more accessible language, so if you do chose to subscribe to one of the more technical periodicals, make sure that it uses language you can easily follow.

News Services & Press Releases Well before articles show up in newsletters or the popular press, they may appear in the form of a press release or a public relations announcement. One of the simplest ways of tracking press releases on Lyme disease is to search the news wires. News wires are used by professional journalists, and have existed since the invention of the telegraph. Today, there are several major “wires” that are used by companies, universities, and other organizations to announce new medical breakthroughs. In the following sample of sources, we will briefly describe how to access each service. These services only post recent news intended for public viewing.

146 Lyme Disease

PR Newswire Perhaps the broadest of the wires is PR Newswire Association, Inc. To access this archive, simply go to http://www.prnewswire.com. Below the search box, select the option “The last 30 days.” In the search box, type “Lyme disease” or synonyms. The search results are shown by order of relevance. When reading these press releases, do not forget that the sponsor of the release may be a company or organization that is trying to sell a particular product or therapy. Their views, therefore, may be biased. The following is typical of press releases that can be found on PR Newswire: ·

CDC Collaborates to Introduce a New Approach For the Prevention of Lyme Disease Summary: Montvale, N.J., May 21 /PRNewswire/ -- After three years of research and testing, the Centers for Disease Control and Prevention (CDC) and the Maxforce Tick Management System announce the launch of a new product developed to control ticks and reduce the risk of Lyme disease and other tick-borne infections. Available now to homeowners in approved areas through licensed applicators, the Maxforce Tick Management System attacks the root of the Lyme disease problem in the northeastern United States by treating the primary hosts of the disease the field mouse and chipmunk. "Contrary to popular belief, small rodents, not deer, are responsible for transmitting the Lyme disease bacteria to ticks," said Chuck Cole, product manger for the Maxforce Tick Management System. "By treating the rodents in residential properties, we get to the root of the problem and break the cycle of Lyme disease." Hatched disease-free ticks feed off small rodents in their first (larval) stage of life, when many are infected with Lyme disease and other tickborne infections. Now carrying the bacteria, ticks in their second (nymphal) stage feed once again, mainly on rodents but also on humans. The danger is that ticks in this second stage are very small, and therefore, not easily detected and removed. This makes the chances of contracting Lyme disease and other tick-borne infections greater for humans. "The Maxforce Tick Management System kills ticks during the critical larval and nymphal stages when they are contracting the Lyme bacteria and other tick-borne infections from small rodents," said Cole. In field trials, researchers from the CDC and the Maxforce Tick Management System tested the product on many residential properties in

Periodicals and News 147

Connecticut. The results showed nearly an 80% reduction in the nymphal tick populations after the first year and a 96% reduction over two years. More than 75% of Lyme disease cases are contracted in residential properties. The Maxforce Tick Management System consists of a small, child- resistant box with an insecticide. Boxes are placed around the perimeter of properties to control the ticks that live on small rodents. The Maxforce Tick Management System works by treating mice and chipmunks that enter each box with a small dose of insecticide. If left untreated, a typical field mouse can carry over 150 ticks during peak tickactivity periods, and all of these ticks have the potential to infect people with Lyme disease and other tick- borne infections. The active ingredient in the insecticide - fipronil - is the key element that makes the Maxforce Tick Management System so effective. Fipronil is also the active ingredient used in a leading tick control product for pets. "The new Maxforce Tick Management System was developed and tested by scientists from the Centers for Disease Control and Prevention (CDC), and collaboration with Aventis Environmental Science made it possible to produce the most effective product and bring it to the public," said Marc Dolan of the Centers for Disease Control and Prevention. Pest management professionals (PMPs) and homeowners who participated in the field trials agree that the Maxforce Tick Management System is an effective tool to combat the ticks that transmit Lyme disease and other tick- borne infections. "Before the trials, we were constantly doing tick checks and removing attached deer ticks from the children and from ourselves," said Lesley Cummin, a Connecticut homeowner, who participated in the field trials. "Now we still do a nightly tick check, but we rarely, if ever, find a tick on the children, on ourselves or in the house. The bait boxes have made an incredible difference in the quality of our life." According to the CDC, close to 18,000 human cases of Lyme disease were reported in 2000, and nearly 90% of those cases were reported by people who live in the northeastern United States. Once infected with Lyme disease, a person may experience flu-like symptoms and develop a red rash in the shape of a bull's eye. Because the symptoms of Lyme disease

148 Lyme Disease

so closely mimic the flu, it often goes undiagnosed and can lead to more serious health problems if left untreated. About the Maxforce Tick Management System The Maxforce Tick Management System is an effective tool in an integrated approach to managing ticks and reducing the risk of contracting Lyme disease. The Maxforce Tick Management System was developed and tested by scientists from the Centers for Disease Control and Prevention (CDC). The Maxforce Tick Management System is approved for use by the EPA under the provisions of Section 18 of the Federal Insecticide, Fungicide, and Rodenticide Act. To find a trained applicator or to get more information on the Maxforce Tick Management System, visit the Web site http://www.MaxforceTMS.com or call 1-800-843-1702.

Reuters The Reuters' Medical News database can be very useful in exploring news archives relating to Lyme disease. While some of the listed articles are free to view, others can be purchased for a nominal fee. To access this archive, go to http://www.reutershealth.com/frame2/arch.html and search by “Lyme disease” (or synonyms). The following was recently listed in this archive for Lyme disease: ·

"Bull's-eye" Lyme disease rash not most common Source: Reuters Medical News Date: March 20, 2002 http://www.reuters.gov/archive/2002/03/20/professional/links/20020 320clin018.html

·

'Bull's eye' rash not always found in Lyme disease Source: Reuters Health eLine Date: March 19, 2002 http://www.reuters.gov/archive/2002/03/19/eline/links/20020319elin 001.html

·

Lyme disease vaccine pulled off US market Source: Reuters Health eLine Date: February 26, 2002 http://www.reuters.gov/archive/2002/02/26/eline/links/20020226elin 043.html

Periodicals and News 149

·

Glaxo pulls Lyme disease vaccine from US market Source: Reuters Medical News Date: February 26, 2002 http://www.reuters.gov/archive/2002/02/26/professional/links/20020 226inds007.html

·

US Lyme disease cases doubled since 1991 Source: Reuters Health eLine Date: January 17, 2002 http://www.reuters.gov/archive/2002/01/17/eline/links/20020117elin 035.html

·

Lyme disease incidence in US has doubled over past decade Source: Reuters Medical News Date: January 17, 2002 http://www.reuters.gov/archive/2002/01/17/professional/links/20020 117epid007.html

·

No single diagnostic test suitable for early Lyme disease Source: Reuters Medical News Date: January 14, 2002 http://www.reuters.gov/archive/2002/01/14/professional/links/20020 114clin003.html

·

Lyme disease moves south along rivers Source: Reuters Health eLine Date: November 15, 2001 http://www.reuters.gov/archive/2001/11/15/eline/links/20011115elin 029.html

·

New rapid test streamlines diagnosis of Lyme disease Source: Reuters Industry Breifing Date: September 19, 2001 http://www.reuters.gov/archive/2001/09/19/business/links/20010919 clin003.html

·

Instant results from new test for Lyme disease Source: Reuters Health eLine Date: September 10, 2001 http://www.reuters.gov/archive/2001/09/10/eline/links/20010910elin 019.html

·

Researchers optimistic about new Lyme disease vaccines Source: Reuters Industry Breifing Date: July 27, 2001 http://www.reuters.gov/archive/2001/07/27/business/links/20010727 drgd002.html

150 Lyme Disease

·

Swedish researchers optimistic about new Lyme disease vaccines Source: Reuters Medical News Date: July 25, 2001 http://www.reuters.gov/archive/2001/07/25/professional/links/20010 725drgd006.html

·

Lyme disease vaccine appears safe and effective for children Source: Reuters Medical News Date: July 03, 2001 http://www.reuters.gov/archive/2001/07/03/professional/links/20010 703clin005.html

·

Single dose of drug prevents Lyme disease: study Source: Reuters Health eLine Date: June 12, 2001 http://www.reuters.gov/archive/2001/06/12/eline/links/20010612elin 017.html

·

Single dose of doxycycline may prevent development of Lyme disease Source: Reuters Industry Breifing Date: June 12, 2001 http://www.reuters.gov/archive/2001/06/12/business/links/20010612 clin010.html

·

Golfers at risk for Lyme disease near the green Source: Reuters Health eLine Date: May 18, 2001 http://www.reuters.gov/archive/2001/05/18/eline/links/20010518elin 015.html

·

Scientists fight Lyme disease with corn bins Source: Reuters Health eLine Date: May 10, 2001 http://www.reuters.gov/archive/2001/05/10/eline/links/20010510elin 004.html

·

Self antigen may perpetuate Lyme disease arthritis Source: Reuters Medical News Date: May 04, 2001 http://www.reuters.gov/archive/2001/05/04/professional/links/20010 504scie004.html

·

Decorin-binding proteins important in Lyme disease pathogenesis Source: Reuters Medical News Date: March 28, 2001 http://www.reuters.gov/archive/2001/03/28/professional/links/20010 328scie002.html

Periodicals and News 151

·

Lyme disease incidence in US has doubled since 1990 Source: Reuters Medical News Date: March 16, 2001 http://www.reuters.gov/archive/2001/03/16/professional/links/20010 316epid006.html

·

Number of reported Lyme disease cases on the rise Source: Reuters Health eLine Date: March 15, 2001 http://www.reuters.gov/archive/2001/03/15/eline/links/20010315elin 029.html

·

Lyme disease vaccine deemed cost effective in endemic areas Source: Reuters Industry Breifing Date: March 02, 2001 http://www.reuters.gov/archive/2001/03/02/business/links/20010302 econ002.html

·

New test for Lyme disease described Source: Reuters Industry Breifing Date: March 01, 2001 http://www.reuters.gov/archive/2001/03/01/business/links/20010301 drgd002.html

·

IGeneX urine antigen test called unreliable for diagnosis of Lyme disease Source: Reuters Medical News Date: February 26, 2001 http://www.reuters.gov/archive/2001/02/26/professional/links/20010 226clin018.html

·

SmithKline, FDA downplay concerns about Lyme disease vaccine Source: Reuters Industry Breifing Date: November 21, 2000 http://www.reuters.gov/archive/2000/11/21/business/links/20001121 rglt006.html

·

Management of Lyme disease remains controversial Source: Reuters Medical News Date: October 30, 2000 http://www.reuters.gov/archive/2000/10/30/professional/links/20001 030clin021.html

152 Lyme Disease

·

African Americans lack Lyme disease information Source: Reuters Health eLine Date: October 23, 2000 http://www.reuters.gov/archive/2000/10/23/eline/links/20001023elin 010.html

·

No evidence chronic Lyme disease exists, scientists say Source: Reuters Health eLine Date: September 08, 2000 http://www.reuters.gov/archive/2000/09/08/eline/links/20000908elin 028.html

·

Antibodies against Lyme disease antigen resolve arthritis in infected mice Source: Reuters Industry Breifing Date: August 07, 2000 http://www.reuters.gov/archive/2000/08/07/business/links/20000807 scie006.html

·

Imugen gets patent on test to distinguish Lyme disease from vaccine response Source: Reuters Industry Breifing Date: July 10, 2000 http://www.reuters.gov/archive/2000/07/10/business/links/20000710 inds007.html

·

Lyme disease confusion could lead to mistreatment Source: Reuters Health eLine Date: June 27, 2000 http://www.reuters.gov/archive/2000/06/27/eline/links/20000627elin 015.html

·

Lyme disease pathogen circumvents normal bacterial dependence on iron Source: Reuters Medical News Date: June 08, 2000 http://www.reuters.gov/archive/2000/06/08/professional/links/20000 608scie007.html

·

Robins may be reservoir for Lyme disease Source: Reuters Medical News Date: May 30, 2000 http://www.reuters.gov/archive/2000/05/30/professional/links/20000 530scie001.html

Periodicals and News 153

·

Lyme disease cases up 70% in the 1990s Source: Reuters Health eLine Date: April 28, 2000 http://www.reuters.gov/archive/2000/04/28/eline/links/20000428elin 020.html

·

OSHA outlines strategies outdoor workers should use to avoid Lyme disease Source: Reuters Medical News Date: April 26, 2000 http://www.reuters.gov/archive/2000/04/26/professional/links/20000 426publ005.html

·

Ixodes ticks may transmit Lyme disease, HGE pathogens simultaneously Source: Reuters Medical News Date: April 26, 2000 http://www.reuters.gov/archive/2000/04/26/professional/links/20000 426scie006.html

·

OSHA guides outdoor workers on avoiding Lyme disease Source: Reuters Health eLine Date: April 25, 2000 http://www.reuters.gov/archive/2000/04/25/eline/links/20000425elin 033.html

·

Infection with Lyme disease spirochete may linger in antibiotic-treated dogs Source: Reuters Medical News Date: April 20, 2000 http://www.reuters.gov/archive/2000/04/20/professional/links/20000 420scie001.html

·

Two camps debate treatment of Lyme disease Source: Reuters Medical News Date: April 12, 2000 http://www.reuters.gov/archive/2000/04/12/professional/links/20000 412publ002.html

·

Migrating birds can act as hosts of Lyme disease spirochete Source: Reuters Medical News Date: February 17, 2000 http://www.reuters.gov/archive/2000/02/17/professional/links/20000 217epid003.html

154 Lyme Disease

·

Migrating birds can carry Lyme disease Source: Reuters Health eLine Date: February 16, 2000 http://www.reuters.gov/archive/2000/02/16/eline/links/20000216elin 015.html

·

Most Lyme disease patients treated with antibiotics have favorable long-term outcome Source: Reuters Medical News Date: February 02, 2000 http://www.reuters.gov/archive/2000/02/02/professional/links/20000 202clin002.html

·

Good news for Lyme disease patients Source: Reuters Health eLine Date: February 01, 2000 http://www.reuters.gov/archive/2000/02/01/eline/links/20000201elin 004.html

·

AAP issues guidelines on prevention of Lyme disease in children Source: Reuters Medical News Date: January 14, 2000 http://www.reuters.gov/archive/2000/01/14/professional/links/20000 114plcy003.html

·

Guidelines aim to prevent Lyme disease in children Source: Reuters Health eLine Date: January 13, 2000 http://www.reuters.gov/archive/2000/01/13/eline/links/20000113elin 023.html

·

Musculoskeletal, neurologic status in Lyme disease patients normal at 6 years Source: Reuters Medical News Date: December 21, 1999 http://www.reuters.gov/archive/1999/12/21/professional/links/19991 221clin001.html

·

Lyme disease not associated with long-term health risks Source: Reuters Health eLine Date: December 20, 1999 http://www.reuters.gov/archive/1999/12/20/eline/links/19991220elin 008.html

Periodicals and News 155

·

Candidate microbial and autoantigens detected in CNS Lyme disease Source: Reuters Medical News Date: December 14, 1999 http://www.reuters.gov/archive/1999/12/14/professional/links/19991 214scie001.html

·

New test may detect early Lyme disease Source: Reuters Medical News Date: November 30, 1999 http://www.reuters.gov/archive/1999/11/30/professional/links/19991 130clin004.html

·

New type of Lyme disease found in southeastern US Source: Reuters Health eLine Date: November 19, 1999 http://www.reuters.gov/archive/1999/11/19/eline/links/19991119elin 005.html

The NIH Within MEDLINEplus, the NIH has made an agreement with the New York Times Syndicate, the AP News Service, and Reuters to deliver news that can be browsed by the public. Search news releases at http://www.nlm.nih.gov/medlineplus/alphanews_a.html. MEDLINEplus allows you to browse across an alphabetical index. Or you can search by date at http://www.nlm.nih.gov/medlineplus/newsbydate.html. Often, news items are indexed by MEDLINEplus within their search engine.

Business Wire Business Wire is similar to PR Newswire. To access this archive, simply go to http://www.businesswire.com. You can scan the news by industry category or company name.

Internet Wire Internet Wire is more focused on technology than the other wires. To access this site, go to http://www.internetwire.com and use the “Search Archive” option. Type in “Lyme disease” (or synonyms). As this service is oriented to technology, you may wish to search for press releases covering diagnostic procedures or tests that you may have read about.

156 Lyme Disease

Search Engines Free-to-view news can also be found in the news section of your favorite search engines (see the health news page at Yahoo: http://dir.yahoo.com/Health/News_and_Media/, or use this Web site’s general news search page http://news.yahoo.com/. Type in “Lyme disease” (or synonyms). If you know the name of a company that is relevant to Lyme disease, you can go to any stock trading Web site (such as www.etrade.com) and search for the company name there. News items across various news sources are reported on indicated hyperlinks.

BBC Covering news from a more European perspective, the British Broadcasting Corporation (BBC) allows the public free access to their news archive located at http://www.bbc.co.uk/. Search by “Lyme disease” (or synonyms).

Newsletter Articles If you choose not to subscribe to a newsletter, you can nevertheless find references to newsletter articles. We recommend that you use the Combined Health Information Database, while limiting your search criteria to “newsletter articles.” Again, you will need to use the “Detailed Search” option. Go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. Go to the bottom of the search page where “You may refine your search by.” Select the dates and language that you prefer. For the format option, select “Newsletter Article.” By making these selections, and typing in “Lyme disease” (or synonyms) into the “For these words:” box, you will only receive results on newsletter articles. You should check back periodically with this database as it is updated every 3 months. The following is a typical result when searching for newsletter articles on Lyme disease: ·

Lyme Disease: Hard to Catch Source: University of California, Berkeley Wellness Letter. 4-5; August 1995. Contact: Health Letter Associates, P.O. Box 412, Prince Street Station, New York, NY 10012-0007.

Periodicals and News 157

Summary: This newsletter article for the general public presents an overview of Lyme disease. The symptoms and diagnosis of Lyme disease are discussed. States where risk of infection is highest are identified. In addition, suggestions for preventing tick bites are presented, including covering one's body with as much clothing as possible, checking oneself occasionally for ticks, and using an insect repellant containing DEET. ·

Pseudo-lyme Disease Source: Bulletin on the Rheumatic Diseases. 44(8):1-3; December 1995. Contact: Arthritis Foundation, 1314 Spring Street, NW, Atlanta, GA 30309. (404) 872-7100. (404) 872-9559 (fax). Summary: This newsletter article for health professionals focuses on pseudo-lyme disease. Reasons for the over diagnosis and treatment of Lyme disease are presented. These include the misapplication of the concept of Lyme disease as the great imitator of other diseases, the uselessness of serologic tests for diagnostic purposes, the absence of verified criteria for diagnosing Lyme disease, the slow resolution of symptoms related to Lyme disease, and the publication of unsubstantiated accounts of Lyme disease. The emergence of pseudoLyme disease as a new diagnosis is discussed. This term describes cases in which Lyme disease is certain to exist in the absence of verifiable evidence of the disease. 13 references.

·

Bell's Palsy: Unmasking Facial Paralysis Source: Mayo Clinic Women's Healthsource. 2(12): 6. December 1998. Contact: Available from Mayo Clinic Women's Healthsource. P.O. Box 56931, Boulder, CO 80322-6931. (800) 876-8633 or (303) 604-1465. Summary: This brief newsletter article describes Bell's palsy, a temporary paralysis of the major facial nerve. Bell's palsy comes on suddenly and its cause is unknown. However, 75 percent of those who get it have an upper respiratory infection first. It may also be associated with diabetes, high blood pressure, trauma, toxins, or Lyme disease. The article lists the symptoms, which usually hit their peak within 48 hours of onset, including sudden paralysis or weakness on one side of the face, facial droop and difficulty with facial expressions, facial stiffness, possible pain behind or in front of the ear on the affected side, sensitivity to sound on the affected side, headache, and loss of taste on the front portion of the tongue. The author notes that treatment for Bell's isn't usually necessary, except to protect the eye from corneal damage (a risk if the eye cannot blink). The author reminds readers that these symptoms mandate a visit

158 Lyme Disease

to a health care provider, to rule out conditions such as a tumor or stroke (which can cause similar symptoms).

Academic Periodicals covering Lyme Disease Academic periodicals can be a highly technical yet valuable source of information on Lyme disease. We have compiled the following list of periodicals known to publish articles relating to Lyme disease and which are currently indexed within the National Library of Medicine's PubMed database (follow hyperlinks to view more information, summaries, etc., for each). In addition to these sources, to keep current on articles written on Lyme disease published by any of the periodicals listed below, you can simply follow the hyperlink indicated or go to the following Web site: www.ncbi.nlm.nih.gov/pubmed. Type the periodical's name into the search box to find the latest studies published. If you want complete details about the historical contents of a periodical, you can also visit http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi. Here, type in the name of the journal or its abbreviation, and you will receive an index of published articles. At http://locatorplus.gov/ you can retrieve more indexing information on medical periodicals (e.g. the name of the publisher). Select the button “Search LOCATORplus.” Then type in the name of the journal and select the advanced search option “Journal Title Search.” The following is a sample of periodicals which publish articles on Lyme disease: ·

Bmj (Clinical Research Ed. . (BMJ) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=B mj+(Clinical+Research+Ed.+&dispmax=20&dispstart=0

·

Infection and Immunity. (Infect Immun) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Inf ection+and+Immunity&dispmax=20&dispstart=0

·

Journal of Manipulative and Physiological Therapeutics. (J Manipulative Physiol Ther) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Jo urnal+of+Manipulative+and+Physiological+Therapeutics&dispmax=20& dispstart=0

Periodicals and News 159

·

Postgraduate Medicine. (Postgrad Med) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Po stgraduate+Medicine&dispmax=20&dispstart=0

·

The American Journal of Tropical Medicine and Hygiene. (Am J Trop Med Hyg) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Th e+American+Journal+of+Tropical+Medicine+and+Hygiene&dispmax=2 0&dispstart=0

·

The Journal of Prosthetic Dentistry. (J Prosthet Dent) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Th e+Journal+of+Prosthetic+Dentistry&dispmax=20&dispstart=0

Vocabulary Builder Autoantigens: Endogenous tissue constituents that have the ability to interact with autoantibodies and cause an immune response. [NIH] Toxin: A poison; frequently used to refer specifically to a protein produced by some higher plants, certain animals, and pathogenic bacteria, which is highly toxic for other living organisms. Such substances are differentiated from the simple chemical poisons and the vegetable alkaloids by their high molecular weight and antigenicity. [EU]

Physician Guidelines and Databases 161

CHAPTER 9. PHYSICIAN GUIDELINES AND DATABASES Overview Doctors and medical researchers rely on a number of information sources to help patients with their conditions. Many will subscribe to journals or newsletters published by their professional associations or refer to specialized textbooks or clinical guides published for the medical profession. In this chapter, we focus on databases and Internet-based guidelines created or written for this professional audience.

NIH Guidelines For the more common diseases, The National Institutes of Health publish guidelines that are frequently consulted by physicians. Publications are typically written by one or more of the various NIH Institutes. For physician guidelines, commonly referred to as “clinical” or “professional” guidelines, you can visit the following Institutes: ·

Office of the Director (OD); guidelines consolidated across agencies available at http://www.nih.gov/health/consumer/conkey.htm

·

National Institute of General Medical Sciences (NIGMS); fact sheets available at http://www.nigms.nih.gov/news/facts/

·

National Library of Medicine (NLM); extensive encyclopedia (A.D.A.M., Inc.) with guidelines: http://www.nlm.nih.gov/medlineplus/healthtopics.html

·

National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS); fact sheets and guidelines available at http://www.nih.gov/niams/healthinfo/

162 Lyme Disease

NIH Databases In addition to the various Institutes of Health that publish professional guidelines, the NIH has designed a number of databases for professionals.27 Physician-oriented resources provide a wide variety of information related to the biomedical and health sciences, both past and present. The format of these resources varies. Searchable databases, bibliographic citations, full text articles (when available), archival collections, and images are all available. The following are referenced by the National Library of Medicine:28 ·

Bioethics: Access to published literature on the ethical, legal and public policy issues surrounding healthcare and biomedical research. This information is provided in conjunction with the Kennedy Institute of Ethics located at Georgetown University, Washington, D.C.: http://www.nlm.nih.gov/databases/databases_bioethics.html

·

HIV/AIDS Resources: Describes various links and databases dedicated to HIV/AIDS research: http://www.nlm.nih.gov/pubs/factsheets/aidsinfs.html

·

NLM Online Exhibitions: Describes “Exhibitions in the History of Medicine”: http://www.nlm.nih.gov/exhibition/exhibition.html. Additional resources for historical scholarship in medicine: http://www.nlm.nih.gov/hmd/hmd.html

·

Biotechnology Information: Access to public databases. The National Center for Biotechnology Information conducts research in computational biology, develops software tools for analyzing genome data, and disseminates biomedical information for the better understanding of molecular processes affecting human health and disease: http://www.ncbi.nlm.nih.gov/

·

Population Information: The National Library of Medicine provides access to worldwide coverage of population, family planning, and related health issues, including family planning technology and programs, fertility, and population law and policy: http://www.nlm.nih.gov/databases/databases_population.html

·

Cancer Information: Access to caner-oriented databases: http://www.nlm.nih.gov/databases/databases_cancer.html

Remember, for the general public, the National Library of Medicine recommends the databases referenced in MEDLINEplus (http://medlineplus.gov/ or http://www.nlm.nih.gov/medlineplus/databases.html). 28 See http://www.nlm.nih.gov/databases/databases.html. 27

Physician Guidelines and Databases 163

·

Profiles in Science: Offering the archival collections of prominent twentieth-century biomedical scientists to the public through modern digital technology: http://www.profiles.nlm.nih.gov/

·

Chemical Information: Provides links to various chemical databases and references: http://sis.nlm.nih.gov/Chem/ChemMain.html

·

Clinical Alerts: Reports the release of findings from the NIH-funded clinical trials where such release could significantly affect morbidity and mortality: http://www.nlm.nih.gov/databases/alerts/clinical_alerts.html

·

Space Life Sciences: Provides links and information to space-based research (including NASA): http://www.nlm.nih.gov/databases/databases_space.html

·

MEDLINE: Bibliographic database covering the fields of medicine, nursing, dentistry, veterinary medicine, the healthcare system, and the pre-clinical sciences: http://www.nlm.nih.gov/databases/databases_medline.html

·

Toxicology and Environmental Health Information (TOXNET): Databases covering toxicology and environmental health: http://sis.nlm.nih.gov/Tox/ToxMain.html

·

Visible Human Interface: Anatomically detailed, three-dimensional representations of normal male and female human bodies: http://www.nlm.nih.gov/research/visible/visible_human.html

While all of the above references may be of interest to physicians who study and treat Lyme disease, the following are particularly noteworthy.

The Combined Health Information Database A comprehensive source of information on clinical guidelines written for professionals is the Combined Health Information Database. You will need to limit your search to “Brochure/Pamphlet,” “Fact Sheet,” or “Information Package” and Lyme disease using the “Detailed Search” option. Go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. To find associations, use the drop boxes at the bottom of the search page where “You may refine your search by.” For the publication date, select “All Years,” select your preferred language, and the format option “Fact Sheet.” By making these selections and typing “Lyme disease” (or synonyms) into the “For these words:” box above, you will only receive results on fact sheets dealing with Lyme disease. The following is a sample result:

164 Lyme Disease

·

Fibromyalgia Source: New York, NY: Nidus Information Services. 1997. 8 p. Contact: Available from Nidus Information Services, 175 Fifth Avenue, Suite 2338, New York, NY 10010. (212) 260-4268. (800) 334-WELL. (212) 529-2349 (fax). Summary: This report for health professionals and individuals with fibromyalgia uses a question-and-answer format to present an overview of fibromyalgia. The symptoms of fibromyalgia are identified. The primary causes of fibromyalgia are outlined, including genetic and biologic factors, chronic sleep disturbance, post-traumatic stress disorder, and hypervigilance. Diagnostic criteria and tests for fibromyalgia are described. Other conditions that exhibit the same symptoms as fibromyalgia are discussed, including chronic fatigue syndrome, Lyme disease, other myalgias, rheumatoid arthritis and other autoimmune diseases, other medical conditions, major depression disorder, and sleep disturbances. Drug and alcohol use and exposure to chemicals and other toxins may also cause some symptoms of fibromyalgia. In addition, the treatment and management of fibromyalgia are reviewed, focusing on exercise, drug therapy, cognitive therapy, stress reduction techniques, and alternative therapies.

·

Tick ID Wallet Card To Protect Your Family Source: Hartford, CT: Lyme Disease Foundation. 1998. 2 p. Contact: Available from Lyme Disease Foundation. 1 Financial Plaza, 18th Floor, Hartford, CT 06103. (800)886-LYME or (860) 525-2000. Fax (860) 525-TICK. E-mail: [email protected]. Website: www.lyme.org. Price: $1.00; bulk orders available at cost. Summary: This wallet card provides the general public with information about tick protection and removal. The card highlights the symptoms of various tick-borne illnesses, including Lyme disease, relapsing fever, Rocky Mountain spotted fever, tick paralysis, tularemia, babesiosis, Colorado tick fever, and ehrlichiosis, and provides pictures of the ticks that cause these illnesses. In addition, it offers suggestions on reducing the chances of getting a tick bite and provides guidelines on properly removing a tick.

·

Guide to Tick-Borne Disorders Source: Hartford, CT: Lyme Disease Foundation. 1997. 8 p. Contact: Available from Lyme Disease Foundation. 1 Financial Plaza, 18th Floor, Hartford, CT 06103. (800)886-LYME or (860) 525-2000. Fax

Physician Guidelines and Databases 165

(860) 525-TICK. E-mail: [email protected]. Website: www.lyme.org. Price: $1.00; bulk orders available at cost. Summary: This pamphlet provides the general public with information about tick-borne illnesses including babesiosis, Colorado tick fever, ehrlichiosis, Lyme disease, relapsing fever, Rocky Mountain spotted fever, tick paralysis, and tularemia, and their symptoms. The pamphlet offers tips on reducing the chances of getting a tick bite, removing a tick, and reducing the number of ticks around a home. In addition, the pamphlet provides information on the Lyme Disease Foundation and lists many of the free services it offers. 6 figures. ·

Healthy Skin and Gardening Source: New York, NY: American Skin Association. 199x. 8 p. Contact: Available from American Skin Association. 150 East 58th Street, 32nd Floor, New York, NY 10155-0002. (800) 499-SKIN or (212) 753-8260. Fax (212) 688-6547. Price: Single copy free; bulk orders available at cost. Summary: This pamphlet provides the general public with information on common skin hazards they are likely to confront while gardening. Exposure of unprotected skin to the sun can cause skin cancer and create wrinkles, dryness, broken blood vessels, and age spots. Although Lyme disease is not solely a skin disorder, a rash that occurs in 60 to 80 percent of all cases is one of its early warning signs. Contact dermatitis can occur after the skin touches a foreign substance in the garden. Bacterial infections can develop in cuts, splinters, insect bites, sunburn blisters, or any abrasion. Fungal infections may also occur. In addition, exposing the skin to wetness, cold, and wind may cause eczema. After describing these hazards the pamphlet outlines ways to protect the skin from them. A two-page insert provides additional information on common poisonous plants, poisoning by plants, safely getting rid of poison ivy, and preventing tick-borne infections.

The NLM Gateway29 The NLM (National Library of Medicine) Gateway is a Web-based system that lets users search simultaneously in multiple retrieval systems at the U.S. National Library of Medicine (NLM). It allows users of NLM services to initiate searches from one Web interface, providing “one-stop searching” for

29

Adapted from NLM: http://gateway.nlm.nih.gov/gw/Cmd?Overview.x.

166 Lyme Disease

many of NLM's information resources or databases.30 One target audience for the Gateway is the Internet user who is new to NLM's online resources and does not know what information is available or how best to search for it. This audience may include physicians and other healthcare providers, researchers, librarians, students, and, increasingly, patients, their families, and the public.31 To use the NLM Gateway, simply go to the search site at http://gateway.nlm.nih.gov/gw/Cmd. Type “Lyme disease” (or synonyms) into the search box and click “Search.” The results will be presented in a tabular form, indicating the number of references in each database category. Results Summary Category Items Found Journal Articles 5890 Books / Periodicals / Audio Visual 99 Consumer Health 40 Meeting Abstracts 5 Other Collections 2 Total 6036

HSTAT32 HSTAT is a free, Web-based resource that provides access to full-text documents used in healthcare decision-making.33 HSTAT's audience includes healthcare providers, health service researchers, policy makers, insurance companies, consumers, and the information professionals who serve these groups. HSTAT provides access to a wide variety of publications, including clinical practice guidelines, quick-reference guides for clinicians, consumer The NLM Gateway is currently being developed by the Lister Hill National Center for Biomedical Communications (LHNCBC) at the National Library of Medicine (NLM) of the National Institutes of Health (NIH). 31 Other users may find the Gateway useful for an overall search of NLM's information resources. Some searchers may locate what they need immediately, while others will utilize the Gateway as an adjunct tool to other NLM search services such as PubMed® and MEDLINEplus®. The Gateway connects users with multiple NLM retrieval systems while also providing a search interface for its own collections. These collections include various types of information that do not logically belong in PubMed, LOCATORplus, or other established NLM retrieval systems (e.g., meeting announcements and pre-1966 journal citations). The Gateway will provide access to the information found in an increasing number of NLM retrieval systems in several phases. 32 Adapted from HSTAT: http://www.nlm.nih.gov/pubs/factsheets/hstat.html. 33 The HSTAT URL is http://hstat.nlm.nih.gov/. 30

Physician Guidelines and Databases 167

health brochures, evidence reports and technology assessments from the Agency for Healthcare Research and Quality (AHRQ), as well as AHRQ's Put Prevention Into Practice.34 Simply search by “Lyme disease” (or synonyms) at the following Web site: http://text.nlm.nih.gov.

Coffee Break: Tutorials for Biologists35 Some patients may wish to have access to a general healthcare site that takes a scientific view of the news and covers recent breakthroughs in biology that may one day assist physicians in developing treatments. To this end, we recommend “Coffee Break,” a collection of short reports on recent biological discoveries. Each report incorporates interactive tutorials that demonstrate how bioinformatics tools are used as a part of the research process. Currently, all Coffee Breaks are written by NCBI staff.36 Each report is about 400 words and is usually based on a discovery reported in one or more articles from recently published, peer-reviewed literature.37 This site has new articles every few weeks, so it can be considered an online magazine of sorts, and intended for general background information. You can access the Coffee Break Web site at http://www.ncbi.nlm.nih.gov/Coffeebreak/.

Other important documents in HSTAT include: the National Institutes of Health (NIH) Consensus Conference Reports and Technology Assessment Reports; the HIV/AIDS Treatment Information Service (ATIS) resource documents; the Substance Abuse and Mental Health Services Administration's Center for Substance Abuse Treatment (SAMHSA/CSAT) Treatment Improvement Protocols (TIP) and Center for Substance Abuse Prevention (SAMHSA/CSAP) Prevention Enhancement Protocols System (PEPS); the Public Health Service (PHS) Preventive Services Task Force's Guide to Clinical Preventive Services; the independent, nonfederal Task Force on Community Services Guide to Community Preventive Services; and the Health Technology Advisory Committee (HTAC) of the Minnesota Health Care Commission (MHCC) health technology evaluations. 35 Adapted from http://www.ncbi.nlm.nih.gov/Coffeebreak/Archive/FAQ.html. 36 The figure that accompanies each article is frequently supplied by an expert external to NCBI, in which case the source of the figure is cited. The result is an interactive tutorial that tells a biological story. 37 After a brief introduction that sets the work described into a broader context, the report focuses on how a molecular understanding can provide explanations of observed biology and lead to therapies for diseases. Each vignette is accompanied by a figure and hypertext links that lead to a series of pages that interactively show how NCBI tools and resources are used in the research process. 34

168 Lyme Disease

Other Commercial Databases In addition to resources maintained by official agencies, other databases exist that are commercial ventures addressing medical professionals. Here are a few examples that may interest you: ·

CliniWeb International: Index and table of contents to selected clinical information on the Internet; see http://www.ohsu.edu/cliniweb/.

·

Image Engine: Multimedia electronic medical record system that integrates a wide range of digitized clinical images with textual data stored in the University of Pittsburgh Medical Center's MARS electronic medical record system; see the following Web site: http://www.cml.upmc.edu/cml/imageengine/imageEngine.html.

·

Medical World Search: Searches full text from thousands of selected medical sites on the Internet; see http://www.mwsearch.com/.

·

MedWeaver: Prototype system that allows users to search differential diagnoses for any list of signs and symptoms, to search medical literature, and to explore relevant Web sites; see http://www.med.virginia.edu/~wmd4n/medweaver.html.

·

Metaphrase: Middleware component intended for use by both caregivers and medical records personnel. It converts the informal language generally used by caregivers into terms from formal, controlled vocabularies; see the following Web site: http://www.lexical.com/Metaphrase.html.

The Genome Project and Lyme Disease With all the discussion in the press about the Human Genome Project, it is only natural that physicians, researchers, and patients want to know about how human genes relate to Lyme disease. In the following section, we will discuss databases and references used by physicians and scientists who work in this area.

Online Mendelian Inheritance in Man (OMIM) The Online Mendelian Inheritance in Man (OMIM) database is a catalog of human genes and genetic disorders authored and edited by Dr. Victor A. McKusick and his colleagues at Johns Hopkins and elsewhere. OMIM was developed for the World Wide Web by the National Center for

Physician Guidelines and Databases 169

Biotechnology Information (NCBI).38 The database contains textual information, pictures, and reference information. It also contains copious links to NCBI's Entrez database of MEDLINE articles and sequence information. Go to http://www.ncbi.nlm.nih.gov/Omim/searchomim.html to search the database. Type “Lyme disease” (or synonyms) in the search box, and click “Submit Search.” If too many results appear, you can narrow the search by adding the word “clinical.” Each report will have additional links to related research and databases. By following these links, especially the link titled “Database Links,” you will be exposed to numerous specialized databases that are largely used by the scientific community. These databases are overly technical and seldom used by the general public, but offer an abundance of information. The following is an example of the results you can obtain from the OMIM for Lyme disease: ·

Glucose-6-phosphate Isomerase; Gpi Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?172400

·

Kartagener Syndrome Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?244400

·

Rheumatoid Arthritis Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?180300

Adapted from http://www.ncbi.nlm.nih.gov/. Established in 1988 as a national resource for molecular biology information, NCBI creates public databases, conducts research in computational biology, develops software tools for analyzing genome data, and disseminates biomedical information--all for the better understanding of molecular processes affecting human health and disease.

38

170 Lyme Disease

Genes and Disease (NCBI - Map) The Genes and Disease database is produced by the National Center for Biotechnology Information of the National Library of Medicine at the National Institutes of Health. Go to http://www.ncbi.nlm.nih.gov/disease/, and browse the system pages to have a full view of important conditions linked to human genes. Since this site is regularly updated, you may wish to re-visit it from time to time. The following systems and associated disorders are addressed: ·

Cancer: Uncontrolled cell division. Examples: Breast And Ovarian Cancer, Burkitt lymphoma, chronic myeloid leukemia, colon cancer, lung cancer, malignant melanoma, multiple endocrine neoplasia, neurofibromatosis, p53 tumor suppressor, pancreatic cancer, prostate cancer, Ras oncogene, RB: retinoblastoma, von Hippel-Lindau syndrome. Web site: http://www.ncbi.nlm.nih.gov/disease/Cancer.html

·

Immune System: Fights invaders. Examples: Asthma, autoimmune polyglandular syndrome, Crohn's disease, DiGeorge syndrome, familial Mediterranean fever, immunodeficiency with Hyper-IgM, severe combined immunodeficiency. Web site: http://www.ncbi.nlm.nih.gov/disease/Immune.html

·

Metabolism: Food and energy. Examples: Adreno-leukodystrophy, Atherosclerosis, Best disease, Gaucher disease, Glucose galactose malabsorption, Gyrate atrophy, Juvenile onset diabetes, Obesity, Paroxysmal nocturnal hemoglobinuria, Phenylketonuria, Refsum disease, Tangier disease, Tay-Sachs disease. Web site: http://www.ncbi.nlm.nih.gov/disease/Metabolism.html

·

Muscle and Bone: Movement and growth. Examples: Duchenne muscular dystrophy, Ellis-van Creveld syndrome, Marfan syndrome, myotonic dystrophy, spinal muscular atrophy. Web site: http://www.ncbi.nlm.nih.gov/disease/Muscle.html

·

Nervous System: Mind and body. Examples: Alzheimer disease, Amyotrophic lateral sclerosis, Angelman syndrome, Charcot-Marie-Tooth disease, epilepsy, essential tremor, Fragile X syndrome, Friedreich's ataxia, Huntington disease, NiemannPick disease, Parkinson disease, Prader-Willi syndrome, Rett syndrome, Spinocerebellar atrophy, Williams syndrome. Web site: http://www.ncbi.nlm.nih.gov/disease/Brain.html

·

Signals: Cellular messages. Examples: Ataxia telangiectasia, Baldness, Cockayne syndrome,

Physician Guidelines and Databases 171

Glaucoma, SRY: sex determination, Tuberous sclerosis, Waardenburg syndrome, Werner syndrome. Web site: http://www.ncbi.nlm.nih.gov/disease/Signals.html ·

Transporters: Pumps and channels. Examples: Cystic Fibrosis, deafness, diastrophic dysplasia, Hemophilia A, long-QT syndrome, Menkes syndrome, Pendred syndrome, polycystic kidney disease, sickle cell anemia, Wilson's disease, Zellweger syndrome. Web site: http://www.ncbi.nlm.nih.gov/disease/Transporters.html

Entrez Entrez is a search and retrieval system that integrates several linked databases at the National Center for Biotechnology Information (NCBI). These databases include nucleotide sequences, protein sequences, macromolecular structures, whole genomes, and MEDLINE through PubMed. Entrez provides access to the following databases: ·

PubMed: Biomedical literature (PubMed), Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed

·

Nucleotide Sequence Database (Genbank): Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Nucleotide

·

Protein Sequence Database: Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Protein

·

Structure: Three-dimensional macromolecular structures, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Structure

·

Genome: Complete genome assemblies, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Genome

·

PopSet: Population study data sets, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Popset

·

OMIM: Online Mendelian Inheritance in Man, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=OMIM

·

Taxonomy: Organisms in GenBank, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Taxonomy

·

Books: Online books, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=books

172 Lyme Disease

·

ProbeSet: Gene Expression Omnibus (GEO), Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=geo

·

3D Domains: Domains from Entrez Structure, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=geo

·

NCBI's Protein Sequence Information Survey Results: Web site: http://www.ncbi.nlm.nih.gov/About/proteinsurvey/

To access the Entrez system at the National Center for Biotechnology Information, go to http://www.ncbi.nlm.nih.gov/entrez/, and then select the database that you would like to search. The databases available are listed in the drop box next to “Search.” In the box next to “for,” enter “Lyme disease” (or synonyms) and click “Go.”

Jablonski's Multiple Congenital Anomaly/Mental Retardation (MCA/MR) Syndromes Database39 This online resource can be quite useful. It has been developed to facilitate the identification and differentiation of syndromic entities. Special attention is given to the type of information that is usually limited or completely omitted in existing reference sources due to space limitations of the printed form. At http://www.nlm.nih.gov/mesh/jablonski/syndrome_toc/toc_a.html you can also search across syndromes using an alphabetical index. You can also search at http://www.nlm.nih.gov/mesh/jablonski/syndrome_db.html.

The Genome Database40 Established at Johns Hopkins University in Baltimore, Maryland in 1990, the Genome Database (GDB) is the official central repository for genomic mapping data resulting from the Human Genome Initiative. In the spring of 1999, the Bioinformatics Supercomputing Centre (BiSC) at the Hospital for Sick Children in Toronto, Ontario assumed the management of GDB. The Human Genome Initiative is a worldwide research effort focusing on structural analysis of human DNA to determine the location and sequence of Adapted from the National Library of Medicine: http://www.nlm.nih.gov/mesh/jablonski/about_syndrome.html. 40 Adapted from the Genome Database: http://gdbwww.gdb.org/gdb/aboutGDB.html#mission. 39

Physician Guidelines and Databases 173

the estimated 100,000 human genes. In support of this project, GDB stores and curates data generated by researchers worldwide who are engaged in the mapping effort of the Human Genome Project (HGP). GDB's mission is to provide scientists with an encyclopedia of the human genome which is continually revised and updated to reflect the current state of scientific knowledge. Although GDB has historically focused on gene mapping, its focus will broaden as the Genome Project moves from mapping to sequence, and finally, to functional analysis. To access the GDB, simply go to the following hyperlink: http://www.gdb.org/. Search “All Biological Data” by “Keyword.” Type “Lyme disease” (or synonyms) into the search box, and review the results. If more than one word is used in the search box, then separate each one with the word “and” or “or” (using “or” might be useful when using synonyms). This database is extremely technical as it was created for specialists. The articles are the results which are the most accessible to non-professionals and often listed under the heading “Citations.” The contact names are also accessible to non-professionals.

Specialized References The following books are specialized references written for professionals interested in Lyme disease (sorted alphabetically by title, hyperlinks provide rankings, information, and reviews at Amazon.com): · Atlas of Clinical Dermatology by Du Vivier; Hardcover, 3rd edition (June 3, 2002), Churchill Livingstone; ISBN: 0443072205; http://www.amazon.com/exec/obidos/ASIN/0443072205/icongroupinterna · Clinical Dermatology by John A. Hunter, et al; Paperback, 3rd edition (June 2002), Blackwell Science Inc; ISBN: 0632059168; http://www.amazon.com/exec/obidos/ASIN/0632059168/icongroupinterna · Clinical Dermatology: A Color Guide to Diagnosis and Therapy by Thomas P. Habif; Hardcover, 4th edition (July 15, 2002), Mosby-Year Book; ISBN: 0323013198; http://www.amazon.com/exec/obidos/ASIN/0323013198/icongroupinterna · Common Skin Diseases by Thomas F. Poyner; Paperback - 176 pages, 1st edition (March 15, 2000), Blackwell Science Inc.; ISBN: 0632051345; http://www.amazon.com/exec/obidos/ASIN/0071054480/icongroupinterna · Dermatology (Pocket Brain) by Kimberly N. Jones; Hardcover (March 2002); ISBN: 0967783925; http://www.amazon.com/exec/obidos/ASIN/0967783925/icongroupinterna

174 Lyme Disease

· Dermatology for Clinicians by Massad G. Joseph; Hardcover - 320 pages (June 5, 2002), CRC Press-Parthenon Publishers; ISBN: 1842141260; http://www.amazon.com/exec/obidos/ASIN/1842141260/icongroupinterna · Essential Dermatopathology by Ronald P. Rapini; Hardcover (August 2002), Mosby-Year Book; ISBN: 0323011985; http://www.amazon.com/exec/obidos/ASIN/0323011985/icongroupinterna · Evidence-Based Dermatology by Maibach; Hardcover (March 2002), B C Decker; ISBN: 1550091727; http://www.amazon.com/exec/obidos/ASIN/1550091727/icongroupinterna · A Multi-Cultural Atlas of Skin Conditions by Darya Samolis, Yuri N. Perjamutrov; Paperback - 120 pages (March 19, 2002); ISBN: 1873413424; http://www.amazon.com/exec/obidos/ASIN/1873413424/icongroupinterna · Treatment of Skin Disease by Mark Lebwohl, et al; Hardcover - 600 pages, 1st edition (March 27, 2002), Mosby, Inc.; ISBN: 0723431981; http://www.amazon.com/exec/obidos/ASIN/0723431981/icongroupinterna

Vocabulary Builder Abrasion: 1. the wearing away of a substance or structure (such as the skin or the teeth) through some unusual or abnormal mechanical process. 2. an area of body surface denuded of skin or mucous membrane by some unusual or abnormal mechanical process. [EU] Eczema: A pruritic papulovesicular dermatitis occurring as a reaction to many endogenous and exogenous agents, characterized in the acute stage by erythema, edema associated with a serous exudate between the cells of the epidermis (spongiosis) and an inflammatory infiltrate in the dermis, oozing and vesiculation, and crusting and scaling; and in the more chronic stages by lichenification or thickening or both, signs of excoriations, and hyperpigmentation or hypopigmentation or both. Atopic dermatitis is the most common type of dermatitis. Called also eczematous dermatitis. [EU] Glucose: D-glucose, a monosaccharide (hexose), C6H12O6, also known as dextrose (q.v.), found in certain foodstuffs, especially fruits, and in the normal blood of all animals. It is the end product of carbohydrate metabolism and is the chief source of energy for living organisms, its utilization being controlled by insulin. Excess glucose is converted to glycogen and stored in the liver and muscles for use as needed and, beyond that, is converted to fat and stored as adipose tissue. Glucose appears in the urine in diabetes mellitus. [EU]

Dissertations 175

CHAPTER 10. DISSERTATIONS ON LYME DISEASE Overview University researchers are active in studying almost all known diseases. The result of research is often published in the form of Doctoral or Master's dissertations. You should understand, therefore, that applied diagnostic procedures and/or therapies can take many years to develop after the thesis that proposed the new technique or approach was written. In this chapter, we will give you a bibliography on recent dissertations relating to Lyme disease. You can read about these in more detail using the Internet or your local medical library. We will also provide you with information on how to use the Internet to stay current on dissertations.

Dissertations on Lyme Disease ProQuest Digital Dissertations is the largest archive of academic dissertations available. From this archive, we have compiled the following list covering dissertations devoted to Lyme disease. You will see that the information provided includes the dissertation’s title, its author, and the author’s institution. To read more about the following, simply use the Internet address indicated. The following covers recent dissertations dealing with Lyme disease: ·

Attention in Children with Lyme Disease As Compared to Those with Adhd by Leonardi, Dana; Phd from Yeshiva University, 2001, 73 pages http://wwwlib.umi.com/dissertations/fullcit/3022685

176 Lyme Disease

·

Characterization of Candidate Genes Regulating the Severity of Lyme Disease by Potter, Melissa Renae; Phd from The University of Utah, 2001, 173 pages http://wwwlib.umi.com/dissertations/fullcit/3026164

·

Characterization of Differential Expression of Vlse and Sigma-54 Dependent Expression of Sigma-s in the Lyme Disease Spirochete, Borrelia Burgdorferi by Frye, Jonathan Gray; Phd from University of Georgia, 2000, 165 pages http://wwwlib.umi.com/dissertations/fullcit/9994092

·

Models of Mast Seeding and Its Ecological Effects on Gypsy Moth Populations and Lyme Disease Risk by Schauber, Eric Michael; Phd from The University of Connecticut, 2000, 175 pages http://wwwlib.umi.com/dissertations/fullcit/9988047

·

Molecular and Immunological Characterization of Ospe Gene Family in Lyme Disease Spirochetes (borrelia Burgdorferi) by Sung, Shianying; Phd from Virginia Commonwealth University, 2000, 136 pages http://wwwlib.umi.com/dissertations/fullcit/9976180

·

Predicting the Risk of Lyme Disease in the Midwestern United States: Surveillance Methods, Environmental Determinants, and Geographic Distribution by Guerra, Marta Alicia; Phd from University of Illinois at Urbana-champaign, 2000, 137 pages http://wwwlib.umi.com/dissertations/fullcit/9990011

·

The Interactions of Experience, Implicit Knowledge and Reflection in Learning to Diagnose Lyme Disease by Bakken, Lori Lynn Schiller, Phd from The University of Wisconsin - Madison, 1998, 228 pages http://wwwlib.umi.com/dissertations/fullcit/9839370

·

The Neuropsychological Examination of Naming in Lyme Borreliosis by Svetina, Christine J.; Phd from Yeshiva University, 2000, 112 pages http://wwwlib.umi.com/dissertations/fullcit/9987414

·

Vertebrate Host Community Composition and the Dynamics of Borrelia Burgdorferi, the Etiologic Agent of Lyme Disease: Theory and Experiments by Tsao, Jean Ijieh; Phd from The University of Chicago, 2000, 113 pages http://wwwlib.umi.com/dissertations/fullcit/9990602

Keeping Current As previously mentioned, an effective way to stay current on dissertations dedicated to Lyme disease is to use the database called ProQuest Digital

Dissertations 177

Dissertations via the Internet, located at the following Web address: http://wwwlib.umi.com/dissertations. The site allows you to freely access the last two years of citations and abstracts. Ask your medical librarian if the library has full and unlimited access to this database. From the library, you should be able to do more complete searches than with the limited 2-year access available to the general public.

179

PART III. APPENDICES

ABOUT PART III Part III is a collection of appendices on general medical topics which may be of interest to patients with Lyme disease and related conditions.

Researching Your Medications 181

APPENDIX A. RESEARCHING YOUR MEDICATIONS Overview There are a number of sources available on new or existing medications which could be prescribed to patients with Lyme disease. While a number of hard copy or CD-Rom resources are available to patients and physicians for research purposes, a more flexible method is to use Internet-based databases. In this chapter, we will begin with a general overview of medications. We will then proceed to outline official recommendations on how you should view your medications. You may also want to research medications that you are currently taking for other conditions as they may interact with medications for Lyme disease. Research can give you information on the side effects, interactions, and limitations of prescription drugs used in the treatment of Lyme disease. Broadly speaking, there are two sources of information on approved medications: public sources and private sources. We will emphasize free-to-use public sources.

182 Lyme Disease

Your Medications: The Basics41 The Agency for Health Care Research and Quality has published extremely useful guidelines on how you can best participate in the medication aspects of Lyme disease. Taking medicines is not always as simple as swallowing a pill. It can involve many steps and decisions each day. The AHCRQ recommends that patients with Lyme disease take part in treatment decisions. Do not be afraid to ask questions and talk about your concerns. By taking a moment to ask questions early, you may avoid problems later. Here are some points to cover each time a new medicine is prescribed: ·

Ask about all parts of your treatment, including diet changes, exercise, and medicines.

·

Ask about the risks and benefits of each medicine or other treatment you might receive.

·

Ask how often you or your doctor will check for side effects from a given medication.

Do not hesitate to ask what is important to you about your medicines. You may want a medicine with the fewest side effects, or the fewest doses to take each day. You may care most about cost, or how the medicine might affect how you live or work. Or, you may want the medicine your doctor believes will work the best. Telling your doctor will help him or her select the best treatment for you. Do not be afraid to “bother” your doctor with your concerns and questions about medications for Lyme disease. You can also talk to a nurse or a pharmacist. They can help you better understand your treatment plan. Feel free to bring a friend or family member with you when you visit your doctor. Talking over your options with someone you trust can help you make better choices, especially if you are not feeling well. Specifically, ask your doctor the following: ·

The name of the medicine and what it is supposed to do.

·

How and when to take the medicine, how much to take, and for how long.

·

What food, drinks, other medicines, or activities you should avoid while taking the medicine.

·

What side effects the medicine may have, and what to do if they occur.

·

If you can get a refill, and how often.

41

This section is adapted from AHCRQ: http://www.ahcpr.gov/consumer/ncpiebro.htm.

Researching Your Medications 183

·

About any terms or directions you do not understand.

·

What to do if you miss a dose.

·

If there is written information you can take home (most pharmacies have information sheets on your prescription medicines; some even offer large-print or Spanish versions).

Do not forget to tell your doctor about all the medicines you are currently taking (not just those for Lyme disease). This includes prescription medicines and the medicines that you buy over the counter. Then your doctor can avoid giving you a new medicine that may not work well with the medications you take now. When talking to your doctor, you may wish to prepare a list of medicines you currently take, the reason you take them, and how you take them. Be sure to include the following information for each: ·

Name of medicine

·

Reason taken

·

Dosage

·

Time(s) of day

Also include any over-the-counter medicines, such as: ·

Laxatives

·

Diet pills

·

Vitamins

·

Cold medicine

·

Aspirin or other pain, headache, or fever medicine

·

Cough medicine

·

Allergy relief medicine

·

Antacids

·

Sleeping pills

·

Others (include names)

Learning More about Your Medications Because of historical investments by various organizations and the emergence of the Internet, it has become rather simple to learn about the medications your doctor has recommended for Lyme disease. One such

184 Lyme Disease

source is the United States Pharmacopeia. In 1820, eleven physicians met in Washington, D.C. to establish the first compendium of standard drugs for the United States. They called this compendium the “U.S. Pharmacopeia (USP).” Today, the USP is a non-profit organization consisting of 800 volunteer scientists, eleven elected officials, and 400 representatives of state associations and colleges of medicine and pharmacy. The USP is located in Rockville, Maryland, and its home page is located at www.usp.org. The USP currently provides standards for over 3,700 medications. The resulting USP DIÒ Advice for the PatientÒ can be accessed through the National Library of Medicine of the National Institutes of Health. The database is partially derived from lists of federally approved medications in the Food and Drug Administration's (FDA) Drug Approvals database.42 While the FDA database is rather large and difficult to navigate, the Phamacopeia is both user-friendly and free to use. It covers more than 9,000 prescription and over-the-counter medications. To access this database, simply type the following hyperlink into your Web browser: http://www.nlm.nih.gov/medlineplus/druginformation.html. To view examples of a given medication (brand names, category, description, preparation, proper use, precautions, side effects, etc.), simply follow the hyperlinks indicated within the United States Pharmacopoeia (USP). It is important to read the disclaimer by the USP (http://www.nlm.nih.gov/medlineplus/drugdisclaimer.html) before using the information provided. Of course, we as editors cannot be certain as to what medications you are taking. Therefore, we have compiled a list of medications associated with the treatment of Lyme disease. Once again, due to space limitations, we only list a sample of medications and provide hyperlinks to ample documentation (e.g. typical dosage, side effects, drug-interaction risks, etc.). The following drugs have been mentioned in the Pharmacopeia and other sources as being potentially applicable to Lyme disease: Azithromycin ·

Systemic - U.S. Brands: Zithromax http://www.nlm.nih.gov/medlineplus/druginfo/azithromycinsys temic202642.html

Though cumbersome, the FDA database can be freely browsed at the following site: www.fda.gov/cder/da/da.htm.

42

Researching Your Medications 185

Corticosteroids ·

Dental - U.S. Brands: Kenalog in Orabase; Orabase-HCA; Oracort; Oralone http://www.nlm.nih.gov/medlineplus/druginfo/corticosteroidsd ental202010.html

·

Inhalation - U.S. Brands: AeroBid; AeroBid-M; Azmacort; Beclovent; Decadron Respihaler; Pulmicort Respules; Pulmicort Turbuhaler; Vanceril; Vanceril 84 mcg Double Strength http://www.nlm.nih.gov/medlineplus/druginfo/corticosteroidsi nhalation202011.html

·

Nasal - U.S. Brands: Beconase; Beconase AQ; Dexacort Turbinaire; Flonase; Nasacort; Nasacort AQ; Nasalide; Nasarel; Nasonex; Rhinocort; Vancenase; Vancenase AQ 84 mcg; Vancenase pockethaler http://www.nlm.nih.gov/medlineplus/druginfo/corticosteroidsn asal202012.html

·

Ophthalmic - U.S. Brands: AK-Dex; AK-Pred; AK-Tate; Baldex; Decadron; Dexair; Dexotic; Econopred; Econopred Plus; Eflone; Flarex; Fluor-Op; FML Forte; FML Liquifilm; FML S.O.P.; HMS Liquifilm; Inflamase Forte; Inflamase Mild; I-Pred; Lite Pred; Maxidex; Ocu-Dex; Ocu-Pred; Ocu-Pr http://www.nlm.nih.gov/medlineplus/druginfo/corticosteroidso phthalmic202013.html

·

Otic - U.S. Brands: Decadron http://www.nlm.nih.gov/medlineplus/druginfo/corticosteroidso tic202014.html

·

Rectal - U.S. Brands: Anucort-HC; Anu-Med HC; Anuprep HC; Anusol-HC; Anutone-HC; Anuzone-HC; Cort-Dome; Cortenema; Cortifoam; Hemorrhoidal HC; Hemril-HC Uniserts; Proctocort; Proctosol-HC; Rectosol-HC http://www.nlm.nih.gov/medlineplus/druginfo/corticosteroidsr ectal203366.html

Doxycycline ·

Dental - U.S. Brands: Atridox http://www.nlm.nih.gov/medlineplus/druginfo/doxycyclineden tal203716.html

186 Lyme Disease

Erythromycins ·

Systemic - U.S. Brands: E.E.S.; E-Base; E-Mycin; ERYC; EryPed; Ery-Tab; Erythro; Erythrocin; Erythrocot; Ilosone; Ilotycin; My-E; PCE; Wintrocin http://www.nlm.nih.gov/medlineplus/druginfo/erythromycinss ystemic202223.html

Headache Medicines, Ergot Derivative-Containing ·

Systemic - U.S. Brands: Cafergot; Cafertine; Cafetrate; D.H.E. 45; Ercaf; Ergo-Caff; Ergomar; Ergostat; Gotamine; Migergot; Wigraine http://www.nlm.nih.gov/medlineplus/druginfo/headachemedici nesergotderivati202216.html

Lyme Disease Vaccine ·

Systemic - U.S. Brands: LYMErix http://www.nlm.nih.gov/medlineplus/druginfo/lymediseasevac cinesystemic203759.html

Penicillins ·

Systemic - U.S. Brands: Amoxil; Bactocill; Beepen-VK; BetapenVK; Bicillin L-A; Cloxapen; Crysticillin 300 A.S.; Dycill; Dynapen; Geocillin; Geopen; Ledercillin VK; Mezlin; Nafcil; Nallpen; Omnipen; Omnipen-N; Pathocil; Pen Vee K; Pentids; Permapen; Pfizerpen; Pfizerpen-AS; Pi http://www.nlm.nih.gov/medlineplus/druginfo/penicillinssyste mic202446.html

Permethrin ·

Systemic - U.S. Brands: http://www.nlm.nih.gov/medlineplus/druginfo/lymediseasevac cinesystemic203759.html

Probenecid ·

Systemic - U.S. Brands: Benemid; Probalan http://www.nlm.nih.gov/medlineplus/druginfo/probenecidsyste mic202480.html

Tetracyclines ·

Systemic - U.S. Brands: http://www.nlm.nih.gov/medlineplus/druginfo/probenecidsyste mic202480.html

Researching Your Medications 187

·

Systemic - U.S. Brands: Achromycin V; Declomycin; Doryx; Dynacin; Minocin; Monodox; Terramycin; Vibramycin; Vibra-Tabs http://www.nlm.nih.gov/medlineplus/druginfo/tetracyclinessyst emic202552.html

·

Topical - U.S. Brands: Achromycin; Aureomycin; Meclan; Topicycline http://www.nlm.nih.gov/medlineplus/druginfo/tetracyclinestopi cal202553.html

Commercial Databases In addition to the medications listed in the USP above, a number of commercial sites are available by subscription to physicians and their institutions. You may be able to access these sources from your local medical library or your doctor's office.

Reuters Health Drug Database The Reuters Health Drug Database can be searched by keyword at the hyperlink: http://www.reutershealth.com/frame2/drug.html. The following medications are listed in the Reuters' database as associated with Lyme disease (including those with contraindications):43 ·

Ceftriaxone Sodium http://www.reutershealth.com/atoz/html/Ceftriaxone_Sodium.htm

·

Cefuroxime http://www.reutershealth.com/atoz/html/Cefuroxime.htm

·

Penicillin G http://www.reutershealth.com/atoz/html/Penicillin_G.htm

·

Penicillin V http://www.reutershealth.com/atoz/html/Penicillin_V.htm

Mosby's GenRx Mosby's GenRx database (also available on CD-Rom and book format) covers 45,000 drug products including generics and international brands. It provides prescribing information, drug interactions, and patient information. 43

Adapted from A to Z Drug Facts by Facts and Comparisons.

188 Lyme Disease

Information in Mosby's GenRx database can be obtained at the following hyperlink: http://www.genrx.com/Mosby/PhyGenRx/group.html.

Physicians Desk Reference The Physicians Desk Reference database (also available in CD-Rom and book format) is a full-text drug database. The database is searchable by brand name, generic name or by indication. It features multiple drug interactions reports. Information can be obtained at the following hyperlink: http://physician.pdr.net/physician/templates/en/acl/psuser_t.htm.

Other Web Sites A number of additional Web sites discuss drug information. As an example, you may like to look at www.drugs.com which reproduces the information in the Pharmacopeia as well as commercial information. You may also want to consider the Web site of the Medical Letter, Inc. which allows users to download articles on various drugs and therapeutics for a nominal fee: http://www.medletter.com/.

Contraindications and Interactions (Hidden Dangers) Some of the medications mentioned in the previous discussions can be problematic for patients with Lyme disease--not because they are used in the treatment process, but because of contraindications, or side effects. Medications with contraindications are those that could react with drugs used to treat Lyme disease or potentially create deleterious side effects in patients with Lyme disease. You should ask your physician about any contraindications, especially as these might apply to other medications that you may be taking for common ailments. Drug-drug interactions occur when two or more drugs react with each other. This drug-drug interaction may cause you to experience an unexpected side effect. Drug interactions may make your medications less effective, cause unexpected side effects, or increase the action of a particular drug. Some drug interactions can even be harmful to you. Be sure to read the label every time you use a nonprescription or prescription drug, and take the time to learn about drug interactions. These precautions may be critical to your health. You can reduce the risk of

Researching Your Medications 189

potentially harmful drug interactions and side effects with a little bit of knowledge and common sense. Drug labels contain important information about ingredients, uses, warnings, and directions which you should take the time to read and understand. Labels also include warnings about possible drug interactions. Further, drug labels may change as new information becomes available. This is why it's especially important to read the label every time you use a medication. When your doctor prescribes a new drug, discuss all over-thecounter and prescription medications, dietary supplements, vitamins, botanicals, minerals and herbals you take as well as the foods you eat. Ask your pharmacist for the package insert for each prescription drug you take. The package insert provides more information about potential drug interactions.

A Final Warning At some point, you may hear of alternative medications from friends, relatives, or in the news media. Advertisements may suggest that certain alternative drugs can produce positive results for patients with Lyme disease. Exercise caution--some of these drugs may have fraudulent claims, and others may actually hurt you. The Food and Drug Administration (FDA) is the official U.S. agency charged with discovering which medications are likely to improve the health of patients with Lyme disease. The FDA warns patients to watch out for44: ·

Secret formulas (real scientists share what they know)

·

Amazing breakthroughs or miracle cures (real breakthroughs don't happen very often; when they do, real scientists do not call them amazing or miracles)

·

Quick, painless, or guaranteed cures

·

If it sounds too good to be true, it probably isn't true.

If you have any questions about any kind of medical treatment, the FDA may have an office near you. Look for their number in the blue pages of the phone book. You can also contact the FDA through its toll-free number, 1888-INFO-FDA (1-888-463-6332), or on the World Wide Web at www.fda.gov. This section has been adapted from http://www.fda.gov/opacom/lowlit/medfraud.html.

44

190 Lyme Disease

General References In addition to the resources provided earlier in this chapter, the following general references describe medications (sorted alphabetically by title; hyperlinks provide rankings, information and reviews at Amazon.com): ·

Comprehensive Dermatologic Drug Therapy by Stephen E. Wolverton (Editor); Paperback - 656 pages (March 15, 2001), W B Saunders Co; ISBN: 0721677282; http://www.amazon.com/exec/obidos/ASIN/0721677282/icongroupinterna

·

Drug Eruption Reference Manual 2000, Millennium Edition by Jerome Z. Litt, M.D. (Editor); Paperback - 662 pages (April 15, 2000), Parthenon Pub Group; ISBN: 185070788X; http://www.amazon.com/exec/obidos/ASIN/185070788X/icongroupinterna

·

Pocket Guide to Medications Used in Dermatology by Andrew J. Scheman, David L. Severson; Paperback - 230 pages, 6th edition (June 15, 1999), Lippincott Williams & Wilkins Publishers; ISBN: 0781721008; http://www.amazon.com/exec/obidos/ASIN/0781721008/icongroupinterna

·

Complete Guide to Prescription and Nonprescription Drugs 2001 (Complete Guide to Prescription and Nonprescription Drugs, 2001) by H. Winter Griffith, Paperback 16th edition (2001), Medical Surveillance; ISBN: 0942447417; http://www.amazon.com/exec/obidos/ASIN/039952634X/icongroupinterna

·

The Essential Guide to Prescription Drugs, 2001 by James J. Rybacki, James W. Long; Paperback - 1274 pages (2001), Harper Resource; ISBN: 0060958162; http://www.amazon.com/exec/obidos/ASIN/0060958162/icongroupinterna

·

Handbook of Commonly Prescribed Drugs by G. John Digregorio, Edward J. Barbieri; Paperback 16th edition (2001), Medical Surveillance; ISBN: 0942447417; http://www.amazon.com/exec/obidos/ASIN/0942447417/icongroupinterna

·

Johns Hopkins Complete Home Encyclopedia of Drugs 2nd ed. by Simeon Margolis (Ed.), Johns Hopkins; Hardcover - 835 pages (2000), Rebus; ISBN: 0929661583; http://www.amazon.com/exec/obidos/ASIN/0929661583/icongroupinterna

·

Medical Pocket Reference: Drugs 2002 by Springhouse Paperback 1st edition (2001), Lippincott Williams & Wilkins Publishers; ISBN: 1582550964; http://www.amazon.com/exec/obidos/ASIN/1582550964/icongroupinterna

Researching Your Medications 191

·

PDR by Medical Economics Staff, Medical Economics Staff Hardcover 3506 pages 55th edition (2000), Medical Economics Company; ISBN: 1563633752; http://www.amazon.com/exec/obidos/ASIN/1563633752/icongroupinterna

·

Pharmacy Simplified: A Glossary of Terms by James Grogan; Paperback 432 pages, 1st edition (2001), Delmar Publishers; ISBN: 0766828581; http://www.amazon.com/exec/obidos/ASIN/0766828581/icongroupinterna

·

Physician Federal Desk Reference by Christine B. Fraizer; Paperback 2nd edition (2001), Medicode Inc; ISBN: 1563373971; http://www.amazon.com/exec/obidos/ASIN/1563373971/icongroupinterna

·

Physician's Desk Reference Supplements Paperback - 300 pages, 53 edition (1999), ISBN: 1563632950; http://www.amazon.com/exec/obidos/ASIN/1563632950/icongroupinterna

Vocabulary Builder The following vocabulary builder gives definitions of words used in this chapter that have not been defined in previous chapters: Azithromycin: A semi-synthetic macrolide antibiotic structurally related to erythromycin. It has been used in the treatment of Mycobacterium avium intracellulare infections, toxoplasmosis, and cryptosporidiosis. [NIH] Inhalation: The drawing of air or other substances into the lungs. [EU] Liquifilm: A thin liquid layer of coating. [EU] Penicillin V: A broad-spectrum penicillin antibiotic used orally in the treatment of mild to moderate infections by susceptible gram-positive organisms. [NIH] Probenecid: The prototypical uricosuric agent. It inhibits the renal excretion of organic anions and reduces tubular reabsorption of urate. Probenecid has also been used to treat patients with renal impairment, and, because it reduces the renal tubular excretion of other drugs, has been used as an adjunct to antibacterial therapy. [NIH]

Researching Alternative Medicine 193

APPENDIX B. RESEARCHING ALTERNATIVE MEDICINE Overview Complementary and alternative medicine (CAM) is one of the most contentious aspects of modern medical practice. You may have heard of these treatments on the radio or on television. Maybe you have seen articles written about these treatments in magazines, newspapers, or books. Perhaps your friends or doctor have mentioned alternatives. In this chapter, we will begin by giving you a broad perspective on complementary and alternative therapies. Next, we will introduce you to official information sources on CAM relating to Lyme disease. Finally, at the conclusion of this chapter, we will provide a list of readings on Lyme disease from various authors. We will begin, however, with the National Center for Complementary and Alternative Medicine's (NCCAM) overview of complementary and alternative medicine.

What Is CAM?45 Complementary and alternative medicine (CAM) covers a broad range of healing philosophies, approaches, and therapies. Generally, it is defined as those treatments and healthcare practices which are not taught in medical schools, used in hospitals, or reimbursed by medical insurance companies. Many CAM therapies are termed “holistic,” which generally means that the healthcare practitioner considers the whole person, including physical, mental, emotional, and spiritual health. Some of these therapies are also known as “preventive,” which means that the practitioner educates and 45

Adapted from the NCCAM: http://nccam.nih.gov/nccam/fcp/faq/index.html#what-is.

194 Lyme Disease

treats the person to prevent health problems from arising, rather than treating symptoms after problems have occurred. People use CAM treatments and therapies in a variety of ways. Therapies are used alone (often referred to as alternative), in combination with other alternative therapies, or in addition to conventional treatment (sometimes referred to as complementary). Complementary and alternative medicine, or “integrative medicine,” includes a broad range of healing philosophies, approaches, and therapies. Some approaches are consistent with physiological principles of Western medicine, while others constitute healing systems with non-Western origins. While some therapies are far outside the realm of accepted Western medical theory and practice, others are becoming established in mainstream medicine. Complementary and alternative therapies are used in an effort to prevent illness, reduce stress, prevent or reduce side effects and symptoms, or control or cure disease. Some commonly used methods of complementary or alternative therapy include mind/body control interventions such as visualization and relaxation, manual healing including acupressure and massage, homeopathy, vitamins or herbal products, and acupuncture.

What Are the Domains of Alternative Medicine?46 The list of CAM practices changes continually. The reason being is that these new practices and therapies are often proved to be safe and effective, and therefore become generally accepted as “mainstream” healthcare practices. Today, CAM practices may be grouped within five major domains: (1) alternative medical systems, (2) mind-body interventions, (3) biologicallybased treatments, (4) manipulative and body-based methods, and (5) energy therapies. The individual systems and treatments comprising these categories are too numerous to list in this sourcebook. Thus, only limited examples are provided within each. Alternative Medical Systems Alternative medical systems involve complete systems of theory and practice that have evolved independent of, and often prior to, conventional biomedical approaches. Many are traditional systems of medicine that are

46

Adapted from the NCCAM: http://nccam.nih.gov/nccam/fcp/classify/index.html.

Researching Alternative Medicine 195

practiced by individual cultures throughout the world, including a number of venerable Asian approaches. Traditional oriental medicine emphasizes the balance or disturbances of qi (pronounced chi) or vital energy in health and disease, respectively. Traditional oriental medicine consists of a group of techniques and methods including acupuncture, herbal medicine, oriental massage, and qi gong (a form of energy therapy). Acupuncture involves stimulating specific anatomic points in the body for therapeutic purposes, usually by puncturing the skin with a thin needle. Ayurveda is India's traditional system of medicine. Ayurvedic medicine (meaning “science of life”) is a comprehensive system of medicine that places equal emphasis on body, mind, and spirit. Ayurveda strives to restore the innate harmony of the individual. Some of the primary Ayurvedic treatments include diet, exercise, meditation, herbs, massage, exposure to sunlight, and controlled breathing. Other traditional healing systems have been developed by the world’s indigenous populations. These populations include Native American, Aboriginal, African, Middle Eastern, Tibetan, and Central and South American cultures. Homeopathy and naturopathy are also examples of complete alternative medicine systems. Homeopathic medicine is an unconventional Western system that is based on the principle that “like cures like,” i.e., that the same substance that in large doses produces the symptoms of an illness, in very minute doses cures it. Homeopathic health practitioners believe that the more dilute the remedy, the greater its potency. Therefore, they use small doses of specially prepared plant extracts and minerals to stimulate the body's defense mechanisms and healing processes in order to treat illness. Naturopathic medicine is based on the theory that disease is a manifestation of alterations in the processes by which the body naturally heals itself and emphasizes health restoration rather than disease treatment. Naturopathic physicians employ an array of healing practices, including the following: diet and clinical nutrition, homeopathy, acupuncture, herbal medicine, hydrotherapy (the use of water in a range of temperatures and methods of applications), spinal and soft-tissue manipulation, physical therapies (such as those involving electrical currents, ultrasound, and light), therapeutic counseling, and pharmacology.

196 Lyme Disease

Mind-Body Interventions Mind-body interventions employ a variety of techniques designed to facilitate the mind's capacity to affect bodily function and symptoms. Only a select group of mind-body interventions having well-documented theoretical foundations are considered CAM. For example, patient education and cognitive-behavioral approaches are now considered “mainstream.” On the other hand, complementary and alternative medicine includes meditation, certain uses of hypnosis, dance, music, and art therapy, as well as prayer and mental healing.

Biological-Based Therapies This category of CAM includes natural and biological-based practices, interventions, and products, many of which overlap with conventional medicine's use of dietary supplements. This category includes herbal, special dietary, orthomolecular, and individual biological therapies. Herbal therapy employs an individual herb or a mixture of herbs for healing purposes. An herb is a plant or plant part that produces and contains chemical substances that act upon the body. Special diet therapies, such as those proposed by Drs. Atkins, Ornish, Pritikin, and Weil, are believed to prevent and/or control illness as well as promote health. Orthomolecular therapies aim to treat disease with varying concentrations of chemicals such as magnesium, melatonin, and mega-doses of vitamins. Biological therapies include, for example, the use of laetrile and shark cartilage to treat cancer and the use of bee pollen to treat autoimmune and inflammatory diseases.

Manipulative and Body-Based Methods This category includes methods that are based on manipulation and/or movement of the body. For example, chiropractors focus on the relationship between structure and function, primarily pertaining to the spine, and how that relationship affects the preservation and restoration of health. Chiropractors use manipulative therapy as an integral treatment tool. In contrast, osteopaths place particular emphasis on the musculoskeletal system and practice osteopathic manipulation. Osteopaths believe that all of the body's systems work together and that disturbances in one system may have an impact upon function elsewhere in the body. Massage therapists manipulate the soft tissues of the body to normalize those tissues.

Researching Alternative Medicine 197

Energy Therapies Energy therapies focus on energy fields originating within the body (biofields) or those from other sources (electromagnetic fields). Biofield therapies are intended to affect energy fields (the existence of which is not yet experimentally proven) that surround and penetrate the human body. Some forms of energy therapy manipulate biofields by applying pressure and/or manipulating the body by placing the hands in or through these fields. Examples include Qi gong, Reiki and Therapeutic Touch. Qi gong is a component of traditional oriental medicine that combines movement, meditation, and regulation of breathing to enhance the flow of vital energy (qi) in the body, improve blood circulation, and enhance immune function. Reiki, the Japanese word representing Universal Life Energy, is based on the belief that, by channeling spiritual energy through the practitioner, the spirit is healed and, in turn, heals the physical body. Therapeutic Touch is derived from the ancient technique of “laying-on of hands.” It is based on the premises that the therapist’s healing force affects the patient's recovery and that healing is promoted when the body's energies are in balance. By passing their hands over the patient, these healers identify energy imbalances. Bioelectromagnetic-based therapies involve the unconventional use of electromagnetic fields to treat illnesses or manage pain. These therapies are often used to treat asthma, cancer, and migraine headaches. Types of electromagnetic fields which are manipulated in these therapies include pulsed fields, magnetic fields, and alternating current or direct current fields.

Can Alternatives Affect My Treatment? A critical issue in pursuing complementary alternatives mentioned thus far is the risk that these might have undesirable interactions with your medical treatment. It becomes all the more important to speak with your doctor who can offer advice on the use of alternatives. Official sources confirm this view. Though written for women, we find that the National Women’s Health Information Center’s advice on pursuing alternative medicine is appropriate for patients of both genders and all ages.47

47

Adapted from http://www.4woman.gov/faq/alternative.htm.

198 Lyme Disease

Is It Okay to Want Both Traditional and Alternative Medicine? Should you wish to explore non-traditional types of treatment, be sure to discuss all issues concerning treatments and therapies with your healthcare provider, whether a physician or practitioner of complementary and alternative medicine. Competent healthcare management requires knowledge of both conventional and alternative therapies you are taking for the practitioner to have a complete picture of your treatment plan. The decision to use complementary and alternative treatments is an important one. Consider before selecting an alternative therapy, the safety and effectiveness of the therapy or treatment, the expertise and qualifications of the healthcare practitioner, and the quality of delivery. These topics should be considered when selecting any practitioner or therapy.

Finding CAM References on Lyme Disease Having read the previous discussion, you may be wondering which complementary or alternative treatments might be appropriate for Lyme disease. For the remainder of this chapter, we will direct you to a number of official sources which can assist you in researching studies and publications. Some of these articles are rather technical, so some patience may be required.

National Center for Complementary and Alternative Medicine The National Center for Complementary and Alternative Medicine (NCCAM) of the National Institutes of Health (http://nccam.nih.gov) has created a link to the National Library of Medicine's databases to allow patients to search for articles that specifically relate to Lyme disease and complementary medicine. To search the database, go to the following Web site: www.nlm.nih.gov/nccam/camonpubmed.html. Select “CAM on PubMed.” Enter “Lyme disease” (or synonyms) into the search box. Click “Go.” The following references provide information on particular aspects of complementary and alternative medicine (CAM) that are related to Lyme disease: ·

A comparative study of mammalian and reptilian alternative pathway of complement-mediated killing of the Lyme disease spirochete (Borrelia burgdorferi). Author(s): Kuo MM, Lane RS, Giclas PC.

Researching Alternative Medicine 199

Source: J Parasitol. 2000 December; 86(6): 1223-8. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11191895&dopt=Abstract ·

Acute "idiopathic" peripheral facial palsy: clinical, serological, and cerebrospinal fluid findings and effects of corticosteroids. Author(s): Hyden D, Roberg M, Forsberg P, Fridell E, Fryden A, Linde A, Odkvist L. Source: American Journal of Otolaryngology. 1993 May-June; 14(3): 17986. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8393307&dopt=Abstract

·

Acute deterioration of Charcot-Marie-Tooth disease IA (CMT IA) following 2 mg of vincristine chemotherapy. Author(s): Hildebrandt G, Holler E, Woenkhaus M, Quarch G, Reichle A, Schalke B, Andreesen R. Source: Annals of Oncology : Official Journal of the European Society for Medical Oncology / Esmo. 2000 June; 11(6): 743-7. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10942065&dopt=Abstract

·

Application of desiccant and insecticidal soap treatments to control Ixodes scapularis (Acari: Ixodidae) nymphs and adults in a hyperendemic woodland site. Author(s): Patrican LA, Allan SA. Source: J Med Entomol. 1995 November; 32(6): 859-63. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8551510&dopt=Abstract

·

Argyria in the ED. Author(s): Newman M, Kolecki P. Source: The American Journal of Emergency Medicine. 2001 October; 19(6): 525-6. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11593479&dopt=Abstract

·

Complement-mediated killing of Borrelia burgdorferi by nonimmune sera from sika deer. Author(s): Nelson DR, Rooney S, Miller NJ, Mather TN.

200 Lyme Disease

Source: J Parasitol. 2000 December; 86(6): 1232-8. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11191897&dopt=Abstract ·

Complement-mediated serum sensitivity among spirochetes that cause Lyme disease. Author(s): van Dam AP, Oei A, Jaspars R, Fijen C, Wilske B, Spanjaard L, Dankert J. Source: Infection and Immunity. 1997 April; 65(4): 1228-36. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9119456&dopt=Abstract

·

Coordinate synthesis and turnover of heat shock proteins in Borrelia burgdorferi: degradation of DnaK during recovery from heat shock. Author(s): Cluss RG, Goel AS, Rehm HL, Schoenecker JG, Boothby JT. Source: Infection and Immunity. 1996 May; 64(5): 1736-43. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8613385&dopt=Abstract

·

Delineation of Borrelia burgdorferi p66 sequences required for integrin alpha(IIb)beta(3) recognition. Author(s): Defoe G, Coburn J. Source: Infection and Immunity. 2001 May; 69(5): 3455-9. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11292775&dopt=Abstract

·

Diagnosing Lyme disease. Patients have to learn to help themselves. Author(s): Mervine P. Source: Bmj (Clinical Research Ed.). 2000 January 8; 320(7227): 121. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10671055&dopt=Abstract

·

Diagnosing Lyme disease. Support group is needed in the United Kingdom. Author(s): Wright P. Source: Bmj (Clinical Research Ed.). 2000 January 8; 320(7227): 121. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10625277&dopt=Abstract

Researching Alternative Medicine 201

·

Effectiveness of host-targeted permethrin in the control of Ixodes dammini (Acari: Ixodidae) Author(s): Stafford KC 3rd. Source: J Med Entomol. 1991 September; 28(5): 611-7. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1941927&dopt=Abstract

·

Efficacy of a permethrin-based acaricide to reduce the abundance of Ixodes dammini (Acari: Ixodidae). Author(s): Deblinger RD, Rimmer DW. Source: J Med Entomol. 1991 September; 28(5): 708-11. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1941940&dopt=Abstract

·

Evaluation of host-targeted acaricide for reducing risk of Lyme disease in southern New York state. Author(s): Daniels TJ, Fish D, Falco RC. Source: J Med Entomol. 1991 July; 28(4): 537-43. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1941916&dopt=Abstract

·

Evaluation of host-targeted applications of permethrin for control of Borrelia-infected Ixodes ricinus (Acari: Ixodidae). Author(s): Mejlon HA, Jaenson TG, Mather TN. Source: Medical and Veterinary Entomology. 1995 April; 9(2): 207-10. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=7787232&dopt=Abstract

·

Fibromyalgia, chronic fatigue syndrome, and myofascial pain syndrome. Author(s): Goldenberg DL. Source: Current Opinion in Rheumatology. 1994 March; 6(2): 223-33. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8024971&dopt=Abstract

·

Forty years of canine vaccination. Author(s): Appel MJ.

202 Lyme Disease

Source: Adv Vet Med. 1999; 41: 309-24. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9890024&dopt=Abstract ·

How can i avoid lyme disease? What to say to the patient who asks. Author(s): Hamilton DR. Source: Postgraduate Medicine. 1990 May 1; 87(6): 167-8, 173-6. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=2336417&dopt=Abstract

·

Lyme disease and babesiosis: acaricide focused on potentially infected ticks. Author(s): Mather TN, Ribeiro JM, Spielman A. Source: The American Journal of Tropical Medicine and Hygiene. 1987 May; 36(3): 609-14. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=3555140&dopt=Abstract

·

Lyme disease misdiagnosed as a temporomandibular joint disorder. Author(s): Lader E. Source: The Journal of Prosthetic Dentistry. 1990 January; 63(1): 82-5. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=2295991&dopt=Abstract

·

Lyme disease misdiagnosed as TMJ syndrome. A case report. Author(s): Lader E. Source: N Y State Dent J. 1989 November; 55(9): 46, 48, 50-2. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=2812630&dopt=Abstract

·

Lyme disease. Author(s): Brier SR. Source: Journal of Manipulative and Physiological Therapeutics. 1990 July-August; 13(6): 337-9. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=2394950&dopt=Abstract

·

Prevention of Lyme disease. Author(s): Couch P, Johnson CE.

Researching Alternative Medicine 203

Source: Am J Hosp Pharm. 1992 May; 49(5): 1164-73. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1595748&dopt=Abstract ·

Tick toxicant. Author(s): Stanislow E. Source: Lancet. 1997 July 26; 350(9073): 294. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9242826&dopt=Abstract

·

Treatment of clothing with a permethrin spray for personal protection against the western black-legged tick, Ixodes pacificus (Acari: Ixodidae). Author(s): Lane RS. Source: Experimental & Applied Acarology. 1989 May; 6(4): 343-52. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=2743839&dopt=Abstract

Additional Web Resources A number of additional Web sites offer encyclopedic information covering CAM and related topics. The following is a representative sample: ·

Alternative Medicine Foundation, Inc.: http://www.herbmed.org/

·

AOL: http://search.aol.com/cat.adp?id=169&layer=&from=subcats

·

Chinese Medicine: http://www.newcenturynutrition.com/

·

drkoop.comÒ: http://www.drkoop.com/InteractiveMedicine/IndexC.html

·

Family Village: http://www.familyvillage.wisc.edu/med_altn.htm

·

Google: http://directory.google.com/Top/Health/Alternative/

·

Healthnotes: http://www.thedacare.org/healthnotes/

·

Open Directory Project: http://dmoz.org/Health/Alternative/

·

TPN.com: http://www.tnp.com/

·

Yahoo.com: http://dir.yahoo.com/Health/Alternative_Medicine/

·

WebMDÒHealth: http://my.webmd.com/drugs_and_herbs

·

WellNet: http://www.wellnet.ca/herbsa-c.htm

204 Lyme Disease

·

WholeHealthMD.com: http://www.wholehealthmd.com/reflib/0,1529,,00.html

The following is a specific Web list relating to Lyme disease; please note that any particular subject below may indicate either a therapeutic use, or a contraindication (potential danger), and does not reflect an official recommendation: ·

General Overview Lyme Disease Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/LymeD iseasecc.html

·

Herbs and Supplements Acidophilus Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/LymeD iseasecc.html Amoxicillin Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/LymeD iseasecc.html Antibiotics Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/LymeD iseasecc.html Anti-Inflammatory Drugs Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/LymeD iseasecc.html

Researching Alternative Medicine 205

Cefuroxime Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/LymeD iseasecc.html Coenzyme Q10 Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/LymeD iseasecc.html Doxycycline Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/LymeD iseasecc.html Erythromycin Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/LymeD iseasecc.html Lactobacillus Acidophilus Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/LymeD iseasecc.html Malic Acid Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/LymeD iseasecc.html Valerian Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/LymeD iseasecc.html ·

Related Conditions

206 Lyme Disease

Carpal Tunnel Syndrome Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Carpal TunnelSyndromecc.html Uveitis Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Uveitis cc.html

General References A good place to find general background information on CAM is the National Library of Medicine. It has prepared within the MEDLINEplus system an information topic page dedicated to complementary and alternative medicine. To access this page, go to the MEDLINEplus site at: www.nlm.nih.gov/medlineplus/alternativemedicine.html. This Web site provides a general overview of various topics and can lead to a number of general sources. The following additional references describe, in broad terms, alternative and complementary medicine (sorted alphabetically by title; hyperlinks provide rankings, information, and reviews at Amazon.com): · The Skin Cancer Answer by I. William Lane, et al; Paperback - 160 pages (February 1999), Avery Penguin Putnam; ISBN: 0895298651; http://www.amazon.com/exec/obidos/ASIN/0895298651/icongroupinterna · Smart Medicine for Your Skin: A Comprehensive Guide to Understanding Conventional and Alternative Therapies to Heal Common Skin Problems by Jeanette Jacknin, M.D.; Paperback - 414 pages (August 6, 2001), Avery Penguin Putnam; ISBN: 1583330984; http://www.amazon.com/exec/obidos/ASIN/1583330984/icongroupinterna · Alternative Medicine for Dummies by James Dillard (Author); Audio Cassette, Abridged edition (1998), Harper Audio; ISBN: 0694520659; http://www.amazon.com/exec/obidos/ASIN/0694520659/icongroupinterna ·

Complementary and Alternative Medicine Secrets by W. Kohatsu (Editor); Hardcover (2001), Hanley & Belfus; ISBN: 1560534400; http://www.amazon.com/exec/obidos/ASIN/1560534400/icongroupinterna

Researching Alternative Medicine 207

·

Dictionary of Alternative Medicine by J. C. Segen; Paperback-2nd edition (2001), Appleton & Lange; ISBN: 0838516211; http://www.amazon.com/exec/obidos/ASIN/0838516211/icongroupinterna

·

Eat, Drink, and Be Healthy: The Harvard Medical School Guide to Healthy Eating by Walter C. Willett, MD, et al; Hardcover - 352 pages (2001), Simon & Schuster; ISBN: 0684863375; http://www.amazon.com/exec/obidos/ASIN/0684863375/icongroupinterna

· Encyclopedia of Natural Medicine, Revised 2nd Edition by Michael T. Murray, Joseph E. Pizzorno; Paperback - 960 pages, 2nd Rev edition (1997), Prima Publishing; ISBN: 0761511571; http://www.amazon.com/exec/obidos/ASIN/0761511571/icongroupinterna ·

Integrative Medicine: An Introduction to the Art & Science of Healing by Andrew Weil (Author); Audio Cassette, Unabridged edition (2001), Sounds True; ISBN: 1564558541; http://www.amazon.com/exec/obidos/ASIN/1564558541/icongroupinterna

·

New Encyclopedia of Herbs & Their Uses by Deni Bown; Hardcover - 448 pages, Revised edition (2001), DK Publishing; ISBN: 078948031X; http://www.amazon.com/exec/obidos/ASIN/078948031X/icongroupinterna

· Textbook of Complementary and Alternative Medicine by Wayne B. Jonas; Hardcover (2003), Lippincott, Williams & Wilkins; ISBN: 0683044370; http://www.amazon.com/exec/obidos/ASIN/0683044370/icongroupinterna For additional information on complementary and alternative medicine, ask your doctor or write to: National Institutes of Health National Center for Complementary and Alternative Medicine Clearinghouse P. O. Box 8218 Silver Spring, MD 20907-8218

Vocabulary Builder The following vocabulary builder gives definitions of words used in this chapter that have not been defined in previous chapters: Chemotherapy: The treatment of disease by means of chemicals that have a specific toxic effect upon the disease - producing microorganisms or that selectively destroy cancerous tissue. [EU]

208 Lyme Disease

Otolaryngology: A surgical specialty concerned with the study and treatment of disorders of the ear, nose, and throat. [NIH] Pediatric: Of or relating to the care and medical treatment of children; belonging to or concerned with pediatrics. [EU]

Researching Nutrition 209

APPENDIX C. RESEARCHING NUTRITION Overview Since the time of Hippocrates, doctors have understood the importance of diet and nutrition to patients’ health and well-being. Since then, they have accumulated an impressive archive of studies and knowledge dedicated to this subject. Based on their experience, doctors and healthcare providers may recommend particular dietary supplements to patients with Lyme disease. Any dietary recommendation is based on a patient's age, body mass, gender, lifestyle, eating habits, food preferences, and health condition. It is therefore likely that different patients with Lyme disease may be given different recommendations. Some recommendations may be directly related to Lyme disease, while others may be more related to the patient's general health. These recommendations, themselves, may differ from what official sources recommend for the average person. In this chapter we will begin by briefly reviewing the essentials of diet and nutrition that will broadly frame more detailed discussions of Lyme disease. We will then show you how to find studies dedicated specifically to nutrition and Lyme disease.

210 Lyme Disease

Food and Nutrition: General Principles What Are Essential Foods? Food is generally viewed by official sources as consisting of six basic elements: (1) fluids, (2) carbohydrates, (3) protein, (4) fats, (5) vitamins, and (6) minerals. Consuming a combination of these elements is considered to be a healthy diet: ·

Fluids are essential to human life as 80-percent of the body is composed of water. Water is lost via urination, sweating, diarrhea, vomiting, diuretics (drugs that increase urination), caffeine, and physical exertion.

·

Carbohydrates are the main source for human energy (thermoregulation) and the bulk of typical diets. They are mostly classified as being either simple or complex. Simple carbohydrates include sugars which are often consumed in the form of cookies, candies, or cakes. Complex carbohydrates consist of starches and dietary fibers. Starches are consumed in the form of pastas, breads, potatoes, rice, and other foods. Soluble fibers can be eaten in the form of certain vegetables, fruits, oats, and legumes. Insoluble fibers include brown rice, whole grains, certain fruits, wheat bran and legumes.

·

Proteins are eaten to build and repair human tissues. Some foods that are high in protein are also high in fat and calories. Food sources for protein include nuts, meat, fish, cheese, and other dairy products.

·

Fats are consumed for both energy and the absorption of certain vitamins. There are many types of fats, with many general publications recommending the intake of unsaturated fats or those low in cholesterol.

Vitamins and minerals are fundamental to human health, growth, and, in some cases, disease prevention. Most are consumed in your diet (exceptions being vitamins K and D which are produced by intestinal bacteria and sunlight on the skin, respectively). Each vitamin and mineral plays a different role in health. The following outlines essential vitamins: ·

Vitamin A is important to the health of your eyes, hair, bones, and skin; sources of vitamin A include foods such as eggs, carrots, and cantaloupe.

·

Vitamin B1, also known as thiamine, is important for your nervous system and energy production; food sources for thiamine include meat, peas, fortified cereals, bread, and whole grains.

·

Vitamin B2, also known as riboflavin, is important for your nervous system and muscles, but is also involved in the release of proteins from

Researching Nutrition 211

nutrients; food sources for riboflavin include dairy products, leafy vegetables, meat, and eggs. ·

Vitamin B3, also known as niacin, is important for healthy skin and helps the body use energy; food sources for niacin include peas, peanuts, fish, and whole grains

·

Vitamin B6, also known as pyridoxine, is important for the regulation of cells in the nervous system and is vital for blood formation; food sources for pyridoxine include bananas, whole grains, meat, and fish.

·

Vitamin B12 is vital for a healthy nervous system and for the growth of red blood cells in bone marrow; food sources for vitamin B12 include yeast, milk, fish, eggs, and meat.

·

Vitamin C allows the body's immune system to fight various diseases, strengthens body tissue, and improves the body's use of iron; food sources for vitamin C include a wide variety of fruits and vegetables.

·

Vitamin D helps the body absorb calcium which strengthens bones and teeth; food sources for vitamin D include oily fish and dairy products.

·

Vitamin E can help protect certain organs and tissues from various degenerative diseases; food sources for vitamin E include margarine, vegetables, eggs, and fish.

·

Vitamin K is essential for bone formation and blood clotting; common food sources for vitamin K include leafy green vegetables.

·

Folic Acid maintains healthy cells and blood and, when taken by a pregnant woman, can prevent her fetus from developing neural tube defects; food sources for folic acid include nuts, fortified breads, leafy green vegetables, and whole grains.

It should be noted that one can overdose on certain vitamins which become toxic if consumed in excess (e.g. vitamin A, D, E and K). Like vitamins, minerals are chemicals that are required by the body to remain in good health. Because the human body does not manufacture these chemicals internally, we obtain them from food and other dietary sources. The more important minerals include: ·

Calcium is needed for healthy bones, teeth, and muscles, but also helps the nervous system function; food sources for calcium include dry beans, peas, eggs, and dairy products.

·

Chromium is helpful in regulating sugar levels in blood; food sources for chromium include egg yolks, raw sugar, cheese, nuts, beets, whole grains, and meat.

212 Lyme Disease

·

Fluoride is used by the body to help prevent tooth decay and to reinforce bone strength; sources of fluoride include drinking water and certain brands of toothpaste.

·

Iodine helps regulate the body's use of energy by synthesizing into the hormone thyroxine; food sources include leafy green vegetables, nuts, egg yolks, and red meat.

·

Iron helps maintain muscles and the formation of red blood cells and certain proteins; food sources for iron include meat, dairy products, eggs, and leafy green vegetables.

·

Magnesium is important for the production of DNA, as well as for healthy teeth, bones, muscles, and nerves; food sources for magnesium include dried fruit, dark green vegetables, nuts, and seafood.

·

Phosphorous is used by the body to work with calcium to form bones and teeth; food sources for phosphorous include eggs, meat, cereals, and dairy products.

·

Selenium primarily helps maintain normal heart and liver functions; food sources for selenium include wholegrain cereals, fish, meat, and dairy products.

·

Zinc helps wounds heal, the formation of sperm, and encourage rapid growth and energy; food sources include dried beans, shellfish, eggs, and nuts.

The United States government periodically publishes recommended diets and consumption levels of the various elements of food. Again, your doctor may encourage deviations from the average official recommendation based on your specific condition. To learn more about basic dietary guidelines, visit the Web site: http://www.health.gov/dietaryguidelines/. Based on these guidelines, many foods are required to list the nutrition levels on the food’s packaging. Labeling Requirements are listed at the following site maintained by the Food and Drug Administration: http://www.cfsan.fda.gov/~dms/labcons.html. When interpreting these requirements, the government recommends that consumers become familiar with the following abbreviations before reading FDA literature:48 ·

DVs (Daily Values): A new dietary reference term that will appear on the food label. It is made up of two sets of references, DRVs and RDIs.

·

DRVs (Daily Reference Values): A set of dietary references that applies to fat, saturated fat, cholesterol, carbohydrate, protein, fiber, sodium, and potassium.

48

Adapted from the FDA: http://www.fda.gov/fdac/special/foodlabel/dvs.html.

Researching Nutrition 213

·

RDIs (Reference Daily Intakes): A set of dietary references based on the Recommended Dietary Allowances for essential vitamins and minerals and, in selected groups, protein. The name “RDI” replaces the term “U.S. RDA.”

·

RDAs (Recommended Dietary Allowances): A set of estimated nutrient allowances established by the National Academy of Sciences. It is updated periodically to reflect current scientific knowledge. What Are Dietary Supplements?49

Dietary supplements are widely available through many commercial sources, including health food stores, grocery stores, pharmacies, and by mail. Dietary supplements are provided in many forms including tablets, capsules, powders, gel-tabs, extracts, and liquids. Historically in the United States, the most prevalent type of dietary supplement was a multivitamin/mineral tablet or capsule that was available in pharmacies, either by prescription or “over the counter.” Supplements containing strictly herbal preparations were less widely available. Currently in the United States, a wide array of supplement products are available, including vitamin, mineral, other nutrients, and botanical supplements as well as ingredients and extracts of animal and plant origin. The Office of Dietary Supplements (ODS) of the National Institutes of Health is the official agency of the United States which has the expressed goal of acquiring “new knowledge to help prevent, detect, diagnose, and treat disease and disability, from the rarest genetic disorder to the common cold.”50 According to the ODS, dietary supplements can have an important impact on the prevention and management of disease and on the maintenance of health.51 The ODS notes that considerable research on the effects of dietary supplements has been conducted in Asia and Europe where the use of plant products, in particular, has a long tradition. However, the This discussion has been adapted from the NIH: http://ods.od.nih.gov/whatare/whatare.html. 50 Contact: The Office of Dietary Supplements, National Institutes of Health, Building 31, Room 1B29, 31 Center Drive, MSC 2086, Bethesda, Maryland 20892-2086, Tel: (301) 435-2920, Fax: (301) 480-1845, E-mail: [email protected]. 51 Adapted from http://ods.od.nih.gov/about/about.html. The Dietary Supplement Health and Education Act defines dietary supplements as “a product (other than tobacco) intended to supplement the diet that bears or contains one or more of the following dietary ingredients: a vitamin, mineral, amino acid, herb or other botanical; or a dietary substance for use to supplement the diet by increasing the total dietary intake; or a concentrate, metabolite, constituent, extract, or combination of any ingredient described above; and intended for ingestion in the form of a capsule, powder, softgel, or gelcap, and not represented as a conventional food or as a sole item of a meal or the diet.” 49

214 Lyme Disease

overwhelming majority of supplements have not been studied scientifically. To explore the role of dietary supplements in the improvement of health care, the ODS plans, organizes, and supports conferences, workshops, and symposia on scientific topics related to dietary supplements. The ODS often works in conjunction with other NIH Institutes and Centers, other government agencies, professional organizations, and public advocacy groups. To learn more about official information on dietary supplements, visit the ODS site at http://ods.od.nih.gov/whatare/whatare.html. Or contact: The Office of Dietary Supplements National Institutes of Health Building 31, Room 1B29 31 Center Drive, MSC 2086 Bethesda, Maryland 20892-2086 Tel: (301) 435-2920 Fax: (301) 480-1845 E-mail: [email protected]

Finding Studies on Lyme Disease The NIH maintains an office dedicated to patient nutrition and diet. The National Institutes of Health’s Office of Dietary Supplements (ODS) offers a searchable bibliographic database called the IBIDS (International Bibliographic Information on Dietary Supplements). The IBIDS contains over 460,000 scientific citations and summaries about dietary supplements and nutrition as well as references to published international, scientific literature on dietary supplements such as vitamins, minerals, and botanicals.52 IBIDS is available to the public free of charge through the ODS Internet page: http://ods.od.nih.gov/databases/ibids.html. After entering the search area, you have three choices: (1) IBIDS Consumer Database, (2) Full IBIDS Database, or (3) Peer Reviewed Citations Only. We recommend that you start with the Consumer Database. While you may not find references for the topics that are of most interest to you, check back periodically as this database is frequently updated. More studies can be Adapted from http://ods.od.nih.gov. IBIDS is produced by the Office of Dietary Supplements (ODS) at the National Institutes of Health to assist the public, healthcare providers, educators, and researchers in locating credible, scientific information on dietary supplements. IBIDS was developed and will be maintained through an interagency partnership with the Food and Nutrition Information Center of the National Agricultural Library, U.S. Department of Agriculture.

52

Researching Nutrition 215

found by searching the Full IBIDS Database. Healthcare professionals and researchers generally use the third option, which lists peer-reviewed citations. In all cases, we suggest that you take advantage of the “Advanced Search” option that allows you to retrieve up to 100 fully explained references in a comprehensive format. Type “Lyme disease” (or synonyms) into the search box. To narrow the search, you can also select the “Title” field. The following information is typical of that found when using the “Full IBIDS Database” when searching using “Lyme disease” (or a synonym): ·

A mutagenic PCR identifies isolates of Borrelia garinii responsible for Lyme borreliosis. Source: Mueller, C. Huttre, P. Sahli, R. Bretz, A.G. Toutoungi, L.N. Peter, O. FEMS-micro-biol-lett. Amsterdam, The Netherlands : Elsevier Science B.V. October 15, 2000. volume 191 (2) page 199-203. 0378-1097

·

Adsorption and biotin-streptavidin amplification in serologic tests for diagnosis of Lyme borreliosis. Author(s): Department of Entomology, Connecticut Agricultural Experiment Station, New Haven 06504. Source: Magnarelli, L A Anderson, J F J-Clin-Microbiol. 1991 September; 29(9): 1761-4 0095-1137

·

Characterization of outer membranes isolated from Borrelia burgdorferi, the Lyme disease spirochete. Source: Radolf, J.D. Goldberg, M.S. Bourell, K. Baker, S.I. Jones, J.D. Norgard, M.V. Infect-immun. Washington, D.C., American Society for Microbiology. June 1995. volume 63 (6) page 2154-2163. 0019-9567

·

Clinical manifestations, pathogenesis, and effect of antibiotic treatment on Lyme borreliosis in dogs. Author(s): James A. Baker Institute for Animal Health, Ithaca, New York, USA. [email protected] Source: Straubinger, R K Straubinger, A F Summers, B A Jacobson, R H Erb, H N Wien-Klin-Wochenschr. 1998 December 23; 110(24): 874-81 0043-5325

·

Episcleritis, conjunctivitis, and keratitis as ocular manifestations of Lyme disease. Author(s): Department of Ophthalmology, University of California School of Medicine, San Francisco. Source: Flach, A J Lavoie, P E Ophthalmology. 1990 August; 97(8): 973-5 0161-6420

216 Lyme Disease

·

Genetic transformation of the Lyme disease agent Borrelia burgdorferi with coumarin-resistant gyrB. Author(s): Laboratory of Vectors and Pathogens, Rocky Mountain Laboratories, National Institute of Allergy and Infectious Diseases, Hamilton, Montana 59840. Source: Samuels, D S Mach, K E Garon, C F J-Bacteriol. 1994 October; 176(19): 6045-9 0021-9193

·

Gestational attenuation of Lyme arthritis is mediated by progesterone and IL-4. Author(s): Department of Immunology, Mayo Foundation, Rochester, MN 55905, USA. Source: Moro, M H Bjornsson, J Marietta, E V Hofmeister, E K Germer, J J Bruinsma, E David, C S Persing, D H J-Immunol. 2001 June 15; 166(12): 7404-9 0022-1767

·

Hemagglutination and proteoglycan binding by the Lyme disease spirochete, Borrelia burgdorferi. Source: Leong, J.M. Morrissey, P.E. Ortega Barria, E. Pereira, M.E.A. Coburn, J. Infect-immun. Washington, D.C., American Society for Microbiology. March 1995. volume 63 (3) page 874-883. 0019-9567

·

Immunoglobulin M capture assay for serologic confirmation of early Lyme disease: analysis of immune complexes with biotinylated Borrelia burgdorferi sonicate enhanced with flagellin peptide epitope. Author(s): Department of Medicine, University of Medicine and Dentistry of New Jersey-Robert Wood Johnson Medical School, New Brunswick, USA. Source: Brunner, M Stein, S Mitchell, P D Sigal, L H J-Clin-Microbiol. 1998 April; 36(4): 1074-80 0095-1137

·

Improved immunoglobulin M serodiagnosis in Lyme borreliosis by using a mu-capture enzyme-linked immunosorbent assay with biotinylated Borrelia burgdorferi flagella. Author(s): Department of Infection Immunology, Statens Seruminstitut, Copenhagen, Denmark. Source: Hansen, K Pii, K Lebech, A M J-Clin-Microbiol. 1991 January; 29(1): 166-73 0095-1137

·

Lyme disease in California: interrelationship of ixodid ticks (Acari), rodents, and Borrelia burgdorferi. Source: Lane, R.S. Loye, J.E. J-Med-Entomol. Lanham, Md. : The Entomological Society of America. Sept 1991. volume 28 (5) page 719-725. 0022-2585

Researching Nutrition 217

·

Nitric oxide production during murine Lyme disease: lack of involvement in host resistance or pathology. Author(s): Department of Pathology, University of Utah School of Medicine, Salt Lake City 84132, USA. Source: Seiler, K P Vavrin, Z Eichwald, E Hibbs, J B Weis, J J InfectImmun. 1995 October; 63(10): 3886-95 0019-9567

·

Ocular Lyme borreliosis. Author(s): Department of Ophthalmology, Bascom Palmer Eye Institute, University of Miami School of Medicine, Florida 33101. Source: Winward, K E Smith, J L Culbertson, W W Paris Hamelin, A AmJ-Ophthalmol. 1989 December 15; 108(6): 651-7 0002-9394

·

Protection of dogs from Lyme disease with a vaccine containing outer surface protein (Osp) A, OspB, and the saponin adjuvant QS21. Author(s): Cambridge Biotech Corp., Worcester, Massachusetts 01605. Source: Coughlin, R T Fish, D Mather, T N Ma, J Pavia, C Bulger, P JInfect-Dis. 1995 April; 171(4): 1049-52 0022-1899

·

Saliva of the Lyme disease vector, Ixodes dammini, blocks cell activation by a nonprostaglandin E2-dependent mechanism. Author(s): Department of Tropical Public Health, Harvard School of Public Health, Boston, Massachusetts 02115. Source: Urioste, S Hall, L R Telford, S R Titus, R G J-Exp-Med. 1994 September 1; 180(3): 1077-85 0022-1007

·

Surface exposure and species specificity of an immunoreactive domain of a 66-kilodalton outer membrane protein (P66) of the Borrelia spp. that cause Lyme disease. Source: Bunikis, J. Noppa, L. Ostberg, Y. Barbour, A.G. Bergstrom, S. Infect-immun. Washington, D.C., American Society for Microbiology. December 1996. volume 64 (12) page 5111-5116. 0019-9567

Federal Resources on Nutrition In addition to the IBIDS, the United States Department of Health and Human Services (HHS) and the United States Department of Agriculture (USDA) provide many sources of information on general nutrition and health. Recommended resources include: ·

healthfinder®, HHS's gateway to health information, including diet and nutrition: http://www.healthfinder.gov/scripts/SearchContext.asp?topic=238&page=0

·

The United States Department of Agriculture's Web site dedicated to nutrition information: www.nutrition.gov

218 Lyme Disease

·

The Food and Drug Administration's Web site for federal food safety information: www.foodsafety.gov

·

The National Action Plan on Overweight and Obesity sponsored by the United States Surgeon General: http://www.surgeongeneral.gov/topics/obesity/

·

The Center for Food Safety and Applied Nutrition has an Internet site sponsored by the Food and Drug Administration and the Department of Health and Human Services: http://vm.cfsan.fda.gov/

·

Center for Nutrition Policy and Promotion sponsored by the United States Department of Agriculture: http://www.usda.gov/cnpp/

·

Food and Nutrition Information Center, National Agricultural Library sponsored by the United States Department of Agriculture: http://www.nal.usda.gov/fnic/

·

Food and Nutrition Service sponsored by the United States Department of Agriculture: http://www.fns.usda.gov/fns/

Additional Web Resources A number of additional Web sites offer encyclopedic information covering food and nutrition. The following is a representative sample: ·

AOL: http://search.aol.com/cat.adp?id=174&layer=&from=subcats

·

Family Village: http://www.familyvillage.wisc.edu/med_nutrition.html

·

Google: http://directory.google.com/Top/Health/Nutrition/

·

Healthnotes: http://www.thedacare.org/healthnotes/

·

Open Directory Project: http://dmoz.org/Health/Nutrition/

·

Yahoo.com: http://dir.yahoo.com/Health/Nutrition/

·

WebMDÒHealth: http://my.webmd.com/nutrition

·

WholeHealthMD.com: http://www.wholehealthmd.com/reflib/0,1529,,00.html

The following is a specific Web list relating to Lyme disease; please note that any particular subject below may indicate either a therapeutic use, or a contraindication (potential danger), and does not reflect an official recommendation:

Researching Nutrition 219

·

Minerals Carnitine Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/LymeD iseasecc.html Magnesium Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/LymeD iseasecc.html

·

Food and Diet Apples Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/LymeD iseasecc.html Fish Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/LymeD iseasecc.html Pears Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/LymeD iseasecc.html

Vocabulary Builder The following vocabulary builder defines words used in the references in this chapter that have not been defined in previous chapters: Adjuvant: A substance which aids another, such as an auxiliary remedy; in

220 Lyme Disease

immunology, nonspecific stimulator (e.g., BCG vaccine) of the immune response. [EU] Adsorption: The attachment of one substance to the surface of another; the concentration of a gas or a substance in solution in a liquid on a surface in contact with the gas or liquid, resulting in a relatively high concentration of the gas or solution at the surface. [EU] Carbohydrate: An aldehyde or ketone derivative of a polyhydric alcohol, particularly of the pentahydric and hexahydric alcohols. They are so named because the hydrogen and oxygen are usually in the proportion to form water, (CH2O)n. The most important carbohydrates are the starches, sugars, celluloses, and gums. They are classified into mono-, di-, tri-, poly- and heterosaccharides. [EU] Cholesterol: The principal sterol of all higher animals, distributed in body tissues, especially the brain and spinal cord, and in animal fats and oils. [NIH] Iodine: A nonmetallic element of the halogen group that is represented by the atomic symbol I, atomic number 53, and atomic weight of 126.90. It is a nutritionally essential element, especially important in thyroid hormone synthesis. In solution, it has anti-infective properties and is used topically. [NIH]

Mutagenic: Inducing genetic mutation. [EU] Niacin: Water-soluble vitamin of the B complex occurring in various animal and plant tissues. Required by the body for the formation of coenzymes NAD and NADP. Has pellagra-curative, vasodilating, and antilipemic properties. [NIH] Ophthalmology: A surgical specialty concerned with the structure and function of the eye and the medical and surgical treatment of its defects and diseases. [NIH] Potassium: An element that is in the alkali group of metals. It has an atomic symbol K, atomic number 19, and atomic weight 39.10. It is the chief cation in the intracellular fluid of muscle and other cells. Potassium ion is a strong electrolyte and it plays a significant role in the regulation of fluid volume and maintenance of the water-electrolyte balance. [NIH] Progesterone: Pregn-4-ene-3,20-dione. The principal progestational hormone of the body, secreted by the corpus luteum, adrenal cortex, and placenta. Its chief function is to prepare the uterus for the reception and development of the fertilized ovum. It acts as an antiovulatory agent when administered on days 5-25 of the menstrual cycle. [NIH] Riboflavin: Nutritional factor found in milk, eggs, malted barley, liver, kidney, heart, and leafy vegetables. The richest natural source is yeast. It occurs in the free form only in the retina of the eye, in whey, and in urine; its principal forms in tissues and cells are as FMN and FAD. [NIH]

Researching Nutrition 221

Selenium: An element with the atomic symbol Se, atomic number 34, and atomic weight 78.96. It is an essential micronutrient for mammals and other animals but is toxic in large amounts. Selenium protects intracellular structures against oxidative damage. It is an essential component of glutathione peroxidase. [NIH] Streptavidin: A 60kD extracellular protein of Streptomyces avidinii with four high-affinity biotin binding sites. Unlike avidin, streptavidin has a near neutral isoelectric point and is free of carbohydrate side chains. [NIH] Thyroxine: An amino acid of the thyroid gland which exerts a stimulating effect on thyroid metabolism. [NIH]

Finding Medical Libraries 223

APPENDIX D. FINDING MEDICAL LIBRARIES Overview At a medical library you can find medical texts and reference books, consumer health publications, specialty newspapers and magazines, as well as medical journals. In this Appendix, we show you how to quickly find a medical library in your area.

Preparation Before going to the library, highlight the references mentioned in this sourcebook that you find interesting. Focus on those items that are not available via the Internet, and ask the reference librarian for help with your search. He or she may know of additional resources that could be helpful to you. Most importantly, your local public library and medical libraries have Interlibrary Loan programs with the National Library of Medicine (NLM), one of the largest medical collections in the world. According to the NLM, most of the literature in the general and historical collections of the National Library of Medicine is available on interlibrary loan to any library. NLM's interlibrary loan services are only available to libraries. If you would like to access NLM medical literature, then visit a library in your area that can request the publications for you.53

53

Adapted from the NLM: http://www.nlm.nih.gov/psd/cas/interlibrary.html.

224 Lyme Disease

Finding a Local Medical Library The quickest method to locate medical libraries is to use the Internet-based directory published by the National Network of Libraries of Medicine (NN/LM). This network includes 4626 members and affiliates that provide many services to librarians, health professionals, and the public. To find a library in your area, simply visit http://nnlm.gov/members/adv.html or call 1-800-338-7657.

Medical Libraries Open to the Public In addition to the NN/LM, the National Library of Medicine (NLM) lists a number of libraries that are generally open to the public and have reference facilities. The following is the NLM’s list plus hyperlinks to each library Web site. These Web pages can provide information on hours of operation and other restrictions. The list below is a small sample of libraries recommended by the National Library of Medicine (sorted alphabetically by name of the U.S. state or Canadian province where the library is located):54 ·

Alabama: Health InfoNet of Jefferson County (Jefferson County Library Cooperative, Lister Hill Library of the Health Sciences), http://www.uab.edu/infonet/

·

Alabama: Richard M. Scrushy Library (American Sports Medicine Institute), http://www.asmi.org/LIBRARY.HTM

·

Arizona: Samaritan Regional Medical Center: The Learning Center (Samaritan Health System, Phoenix, Arizona), http://www.samaritan.edu/library/bannerlibs.htm

·

California: Kris Kelly Health Information Center (St. Joseph Health System), http://www.humboldt1.com/~kkhic/index.html

·

California: Community Health Library of Los Gatos (Community Health Library of Los Gatos), http://www.healthlib.org/orgresources.html

·

California: Consumer Health Program and Services (CHIPS) (County of Los Angeles Public Library, Los Angeles County Harbor-UCLA Medical Center Library) - Carson, CA, http://www.colapublib.org/services/chips.html

·

California: Gateway Health Library (Sutter Gould Medical Foundation)

·

California: Health Library (Stanford University Medical Center), http://www-med.stanford.edu/healthlibrary/

54

Abstracted from http://www.nlm.nih.gov/medlineplus/libraries.html.

Finding Medical Libraries 225

·

California: Patient Education Resource Center - Health Information and Resources (University of California, San Francisco), http://sfghdean.ucsf.edu/barnett/PERC/default.asp

·

California: Redwood Health Library (Petaluma Health Care District), http://www.phcd.org/rdwdlib.html

·

California: San José PlaneTree Health Library, http://planetreesanjose.org/

·

California: Sutter Resource Library (Sutter Hospitals Foundation), http://go.sutterhealth.org/comm/resc-library/sac-resources.html

·

California: University of California, Davis. Health Sciences Libraries

·

California: ValleyCare Health Library & Ryan Comer Cancer Resource Center (ValleyCare Health System), http://www.valleycare.com/library.html

·

California: Washington Community Health Resource Library (Washington Community Health Resource Library), http://www.healthlibrary.org/

·

Colorado: William V. Gervasini Memorial Library (Exempla Healthcare), http://www.exempla.org/conslib.htm

·

Connecticut: Hartford Hospital Health Science Libraries (Hartford Hospital), http://www.harthosp.org/library/

·

Connecticut: Healthnet: Connecticut Consumer Health Information Center (University of Connecticut Health Center, Lyman Maynard Stowe Library), http://library.uchc.edu/departm/hnet/

·

Connecticut: Waterbury Hospital Health Center Library (Waterbury Hospital), http://www.waterburyhospital.com/library/consumer.shtml

·

Delaware: Consumer Health Library (Christiana Care Health System, Eugene du Pont Preventive Medicine & Rehabilitation Institute), http://www.christianacare.org/health_guide/health_guide_pmri_health _info.cfm

·

Delaware: Lewis B. Flinn Library (Delaware Academy of Medicine), http://www.delamed.org/chls.html

·

Georgia: Family Resource Library (Medical College of Georgia), http://cmc.mcg.edu/kids_families/fam_resources/fam_res_lib/frl.htm

·

Georgia: Health Resource Center (Medical Center of Central Georgia), http://www.mccg.org/hrc/hrchome.asp

·

Hawaii: Hawaii Medical Library: Consumer Health Information Service (Hawaii Medical Library), http://hml.org/CHIS/

226 Lyme Disease

·

Idaho: DeArmond Consumer Health Library (Kootenai Medical Center), http://www.nicon.org/DeArmond/index.htm

·

Illinois: Health Learning Center of Northwestern Memorial Hospital (Northwestern Memorial Hospital, Health Learning Center), http://www.nmh.org/health_info/hlc.html

·

Illinois: Medical Library (OSF Saint Francis Medical Center), http://www.osfsaintfrancis.org/general/library/

·

Kentucky: Medical Library - Services for Patients, Families, Students & the Public (Central Baptist Hospital), http://www.centralbap.com/education/community/library.htm

·

Kentucky: University of Kentucky - Health Information Library (University of Kentucky, Chandler Medical Center, Health Information Library), http://www.mc.uky.edu/PatientEd/

·

Louisiana: Alton Ochsner Medical Foundation Library (Alton Ochsner Medical Foundation), http://www.ochsner.org/library/

·

Louisiana: Louisiana State University Health Sciences Center Medical Library-Shreveport, http://lib-sh.lsuhsc.edu/

·

Maine: Franklin Memorial Hospital Medical Library (Franklin Memorial Hospital), http://www.fchn.org/fmh/lib.htm

·

Maine: Gerrish-True Health Sciences Library (Central Maine Medical Center), http://www.cmmc.org/library/library.html

·

Maine: Hadley Parrot Health Science Library (Eastern Maine Healthcare), http://www.emh.org/hll/hpl/guide.htm

·

Maine: Maine Medical Center Library (Maine Medical Center), http://www.mmc.org/library/

·

Maine: Parkview Hospital, http://www.parkviewhospital.org/communit.htm#Library

·

Maine: Southern Maine Medical Center Health Sciences Library (Southern Maine Medical Center), http://www.smmc.org/services/service.php3?choice=10

·

Maine: Stephens Memorial Hospital Health Information Library (Western Maine Health), http://www.wmhcc.com/hil_frame.html

·

Manitoba, Canada: Consumer & Patient Health Information Service (University of Manitoba Libraries), http://www.umanitoba.ca/libraries/units/health/reference/chis.html

·

Manitoba, Canada: J.W. Crane Memorial Library (Deer Lodge Centre), http://www.deerlodge.mb.ca/library/libraryservices.shtml

Finding Medical Libraries 227

·

Maryland: Health Information Center at the Wheaton Regional Library (Montgomery County, Md., Dept. of Public Libraries, Wheaton Regional Library), http://www.mont.lib.md.us/healthinfo/hic.asp

·

Massachusetts: Baystate Medical Center Library (Baystate Health System), http://www.baystatehealth.com/1024/

·

Massachusetts: Boston University Medical Center Alumni Medical Library (Boston University Medical Center), http://medlibwww.bu.edu/library/lib.html

·

Massachusetts: Lowell General Hospital Health Sciences Library (Lowell General Hospital), http://www.lowellgeneral.org/library/HomePageLinks/WWW.htm

·

Massachusetts: Paul E. Woodard Health Sciences Library (New England Baptist Hospital), http://www.nebh.org/health_lib.asp

·

Massachusetts: St. Luke's Hospital Health Sciences Library (St. Luke's Hospital), http://www.southcoast.org/library/

·

Massachusetts: Treadwell Library Consumer Health Reference Center (Massachusetts General Hospital), http://www.mgh.harvard.edu/library/chrcindex.html

·

Massachusetts: UMass HealthNet (University of Massachusetts Medical School), http://healthnet.umassmed.edu/

·

Michigan: Botsford General Hospital Library - Consumer Health (Botsford General Hospital, Library & Internet Services), http://www.botsfordlibrary.org/consumer.htm

·

Michigan: Helen DeRoy Medical Library (Providence Hospital and Medical Centers), http://www.providence-hospital.org/library/

·

Michigan: Marquette General Hospital - Consumer Health Library (Marquette General Hospital, Health Information Center), http://www.mgh.org/center.html

·

Michigan: Patient Education Resouce Center - University of Michigan Cancer Center (University of Michigan Comprehensive Cancer Center), http://www.cancer.med.umich.edu/learn/leares.htm

·

Michigan: Sladen Library & Center for Health Information Resources Consumer Health Information, http://www.sladen.hfhs.org/library/consumer/index.html

·

Montana: Center for Health Information (St. Patrick Hospital and Health Sciences Center), http://www.saintpatrick.org/chi/librarydetail.php3?ID=41

228 Lyme Disease

·

National: Consumer Health Library Directory (Medical Library Association, Consumer and Patient Health Information Section), http://caphis.mlanet.org/directory/index.html

·

National: National Network of Libraries of Medicine (National Library of Medicine) - provides library services for health professionals in the United States who do not have access to a medical library, http://nnlm.gov/

·

National: NN/LM List of Libraries Serving the Public (National Network of Libraries of Medicine), http://nnlm.gov/members/

·

Nevada: Health Science Library, West Charleston Library (Las Vegas Clark County Library District), http://www.lvccld.org/special_collections/medical/index.htm

·

New Hampshire: Dartmouth Biomedical Libraries (Dartmouth College Library), http://www.dartmouth.edu/~biomed/resources.htmld/conshealth.htmld/

·

New Jersey: Consumer Health Library (Rahway Hospital), http://www.rahwayhospital.com/library.htm

·

New Jersey: Dr. Walter Phillips Health Sciences Library (Englewood Hospital and Medical Center), http://www.englewoodhospital.com/links/index.htm

·

New Jersey: Meland Foundation (Englewood Hospital and Medical Center), http://www.geocities.com/ResearchTriangle/9360/

·

New York: Choices in Health Information (New York Public Library) NLM Consumer Pilot Project participant, http://www.nypl.org/branch/health/links.html

·

New York: Health Information Center (Upstate Medical University, State University of New York), http://www.upstate.edu/library/hic/

·

New York: Health Sciences Library (Long Island Jewish Medical Center), http://www.lij.edu/library/library.html

·

New York: ViaHealth Medical Library (Rochester General Hospital), http://www.nyam.org/library/

·

Ohio: Consumer Health Library (Akron General Medical Center, Medical & Consumer Health Library), http://www.akrongeneral.org/hwlibrary.htm

·

Oklahoma: Saint Francis Health System Patient/Family Resource Center (Saint Francis Health System), http://www.sfhtulsa.com/patientfamilycenter/default.asp

Finding Medical Libraries 229

·

Oregon: Planetree Health Resource Center (Mid-Columbia Medical Center), http://www.mcmc.net/phrc/

·

Pennsylvania: Community Health Information Library (Milton S. Hershey Medical Center), http://www.hmc.psu.edu/commhealth/

·

Pennsylvania: Community Health Resource Library (Geisinger Medical Center), http://www.geisinger.edu/education/commlib.shtml

·

Pennsylvania: HealthInfo Library (Moses Taylor Hospital), http://www.mth.org/healthwellness.html

·

Pennsylvania: Hopwood Library (University of Pittsburgh, Health Sciences Library System), http://www.hsls.pitt.edu/chi/hhrcinfo.html

·

Pennsylvania: Koop Community Health Information Center (College of Physicians of Philadelphia), http://www.collphyphil.org/kooppg1.shtml

·

Pennsylvania: Learning Resources Center - Medical Library (Susquehanna Health System), http://www.shscares.org/services/lrc/index.asp

·

Pennsylvania: Medical Library (UPMC Health System), http://www.upmc.edu/passavant/library.htm

·

Quebec, Canada: Medical Library (Montreal General Hospital), http://ww2.mcgill.ca/mghlib/

·

South Dakota: Rapid City Regional Hospital - Health Information Center (Rapid City Regional Hospital, Health Information Center), http://www.rcrh.org/education/LibraryResourcesConsumers.htm

·

Texas: Houston HealthWays (Houston Academy of Medicine-Texas Medical Center Library), http://hhw.library.tmc.edu/

·

Texas: Matustik Family Resource Center (Cook Children's Health Care System), http://www.cookchildrens.com/Matustik_Library.html

·

Washington: Community Health Library (Kittitas Valley Community Hospital), http://www.kvch.com/

·

Washington: Southwest Washington Medical Center Library (Southwest Washington Medical Center), http://www.swmedctr.com/Home/

Online Glossaries 231

APPENDIX E. YOUR RIGHTS AND INSURANCE Overview Any patient with Lyme disease faces a series of issues related more to the healthcare industry than to the medical condition itself. This appendix covers two important topics in this regard: your rights and responsibilities as a patient, and how to get the most out of your medical insurance plan.

Your Rights as a Patient The President’s Advisory Commission on Consumer Protection and Quality in the Healthcare Industry has created the following summary of your rights as a patient.55 Information Disclosure Consumers have the right to receive accurate, easily understood information. Some consumers require assistance in making informed decisions about health plans, health professionals, and healthcare facilities. Such information includes: ·

Health plans. Covered benefits, cost-sharing, and procedures for resolving complaints, licensure, certification, and accreditation status, comparable measures of quality and consumer satisfaction, provider network composition, the procedures that govern access to specialists and emergency services, and care management information.

55Adapted

from Consumer Bill of Rights and Responsibilities: http://www.hcqualitycommission.gov/press/cbor.html#head1.

232 Lyme Disease

·

Health professionals. Education, board certification, and recertification, years of practice, experience performing certain procedures, and comparable measures of quality and consumer satisfaction.

·

Healthcare facilities. Experience in performing certain procedures and services, accreditation status, comparable measures of quality, worker, and consumer satisfaction, and procedures for resolving complaints.

·

Consumer assistance programs. Programs must be carefully structured to promote consumer confidence and to work cooperatively with health plans, providers, payers, and regulators. Desirable characteristics of such programs are sponsorship that ensures accountability to the interests of consumers and stable, adequate funding.

Choice of Providers and Plans Consumers have the right to a choice of healthcare providers that is sufficient to ensure access to appropriate high-quality healthcare. To ensure such choice, the Commission recommends the following: ·

Provider network adequacy. All health plan networks should provide access to sufficient numbers and types of providers to assure that all covered services will be accessible without unreasonable delay -including access to emergency services 24 hours a day and 7 days a week. If a health plan has an insufficient number or type of providers to provide a covered benefit with the appropriate degree of specialization, the plan should ensure that the consumer obtains the benefit outside the network at no greater cost than if the benefit were obtained from participating providers.

·

Women's health services. Women should be able to choose a qualified provider offered by a plan -- such as gynecologists, certified nurse midwives, and other qualified healthcare providers -- for the provision of covered care necessary to provide routine and preventative women's healthcare services.

·

Access to specialists. Consumers with complex or serious medical conditions who require frequent specialty care should have direct access to a qualified specialist of their choice within a plan's network of providers. Authorizations, when required, should be for an adequate number of direct access visits under an approved treatment plan.

·

Transitional care. Consumers who are undergoing a course of treatment for a chronic or disabling condition (or who are in the second or third trimester of a pregnancy) at the time they involuntarily change health

Online Glossaries 233

plans or at a time when a provider is terminated by a plan for other than cause should be able to continue seeing their current specialty providers for up to 90 days (or through completion of postpartum care) to allow for transition of care. ·

Choice of health plans. Public and private group purchasers should, wherever feasible, offer consumers a choice of high-quality health insurance plans.

Access to Emergency Services Consumers have the right to access emergency healthcare services when and where the need arises. Health plans should provide payment when a consumer presents to an emergency department with acute symptoms of sufficient severity--including severe pain--such that a “prudent layperson” could reasonably expect the absence of medical attention to result in placing that consumer's health in serious jeopardy, serious impairment to bodily functions, or serious dysfunction of any bodily organ or part.

Participation in Treatment Decisions Consumers have the right and responsibility to fully participate in all decisions related to their healthcare. Consumers who are unable to fully participate in treatment decisions have the right to be represented by parents, guardians, family members, or other conservators. Physicians and other health professionals should: ·

Provide patients with sufficient information and opportunity to decide among treatment options consistent with the informed consent process.

·

Discuss all treatment options with a patient in a culturally competent manner, including the option of no treatment at all.

·

Ensure that persons with disabilities have effective communications with members of the health system in making such decisions.

·

Discuss all current treatments a consumer may be undergoing.

·

Discuss all risks, nontreatment.

·

Give patients the opportunity to refuse treatment and to express preferences about future treatment decisions.

benefits,

and

consequences

to

treatment

or

234 Lyme Disease

·

Discuss the use of advance directives -- both living wills and durable powers of attorney for healthcare -- with patients and their designated family members.

·

Abide by the decisions made by their patients and/or their designated representatives consistent with the informed consent process.

Health plans, health providers, and healthcare facilities should: ·

Disclose to consumers factors -- such as methods of compensation, ownership of or interest in healthcare facilities, or matters of conscience -that could influence advice or treatment decisions.

·

Assure that provider contracts do not contain any so-called “gag clauses” or other contractual mechanisms that restrict healthcare providers' ability to communicate with and advise patients about medically necessary treatment options.

·

Be prohibited from penalizing or seeking retribution against healthcare professionals or other health workers for advocating on behalf of their patients.

Respect and Nondiscrimination Consumers have the right to considerate, respectful care from all members of the healthcare industry at all times and under all circumstances. An environment of mutual respect is essential to maintain a quality healthcare system. To assure that right, the Commission recommends the following: ·

Consumers must not be discriminated against in the delivery of healthcare services consistent with the benefits covered in their policy, or as required by law, based on race, ethnicity, national origin, religion, sex, age, mental or physical disability, sexual orientation, genetic information, or source of payment.

·

Consumers eligible for coverage under the terms and conditions of a health plan or program, or as required by law, must not be discriminated against in marketing and enrollment practices based on race, ethnicity, national origin, religion, sex, age, mental or physical disability, sexual orientation, genetic information, or source of payment. Confidentiality of Health Information

Consumers have the right to communicate with healthcare providers in confidence and to have the confidentiality of their individually identifiable

Online Glossaries 235

healthcare information protected. Consumers also have the right to review and copy their own medical records and request amendments to their records. Complaints and Appeals Consumers have the right to a fair and efficient process for resolving differences with their health plans, healthcare providers, and the institutions that serve them, including a rigorous system of internal review and an independent system of external review. A free copy of the Patient's Bill of Rights is available from the American Hospital Association.56

Patient Responsibilities Treatment is a two-way street between you and your healthcare providers. To underscore the importance of finance in modern healthcare as well as your responsibility for the financial aspects of your care, the President’s Advisory Commission on Consumer Protection and Quality in the Healthcare Industry has proposed that patients understand the following “Consumer Responsibilities.”57 In a healthcare system that protects consumers' rights, it is reasonable to expect and encourage consumers to assume certain responsibilities. Greater individual involvement by the consumer in his or her care increases the likelihood of achieving the best outcome and helps support a quality-oriented, cost-conscious environment. Such responsibilities include: ·

Take responsibility for maximizing healthy habits such as exercising, not smoking, and eating a healthy diet.

·

Work collaboratively with healthcare providers in developing and carrying out agreed-upon treatment plans.

·

Disclose relevant information and clearly communicate wants and needs.

·

Use your health insurance plan's internal complaint and appeal processes to address your concerns.

·

Avoid knowingly spreading disease.

56 To order your free copy of the Patient's Bill of Rights, telephone 312-422-3000 or visit the American Hospital Association’s Web site: http://www.aha.org. Click on “Resource Center,” go to “Search” at bottom of page, and then type in “Patient's Bill of Rights.” The Patient’s Bill of Rights is also available from Fax on Demand, at 312-422-2020, document number 471124. 57 Adapted from http://www.hcqualitycommission.gov/press/cbor.html#head1.

236 Lyme Disease

·

Recognize the reality of risks, the limits of the medical science, and the human fallibility of the healthcare professional.

·

Be aware of a healthcare provider's obligation to be reasonably efficient and equitable in providing care to other patients and the community.

·

Become knowledgeable about your health plan’s coverage and options (when available) including all covered benefits, limitations, and exclusions, rules regarding use of network providers, coverage and referral rules, appropriate processes to secure additional information, and the process to appeal coverage decisions.

·

Show respect for other patients and health workers.

·

Make a good-faith effort to meet financial obligations.

·

Abide by administrative and operational procedures of health plans, healthcare providers, and Government health benefit programs.

Choosing an Insurance Plan There are a number of official government agencies that help consumers understand their healthcare insurance choices.58 The U.S. Department of Labor, in particular, recommends ten ways to make your health benefits choices work best for you.59 1. Your options are important. There are many different types of health benefit plans. Find out which one your employer offers, then check out the plan, or plans, offered. Your employer's human resource office, the health plan administrator, or your union can provide information to help you match your needs and preferences with the available plans. The more information you have, the better your healthcare decisions will be. 2. Reviewing the benefits available. Do the plans offered cover preventive care, well-baby care, vision or dental care? Are there deductibles? Answers to these questions can help determine the out-of-pocket expenses you may face. Matching your needs and those of your family members will result in the best possible benefits. Cheapest may not always be best. Your goal is high quality health benefits.

More information about quality across programs is provided at the following AHRQ Web site: http://www.ahrq.gov/consumer/qntascii/qnthplan.htm. 59 Adapted from the Department of Labor: http://www.dol.gov/dol/pwba/public/pubs/health/top10-text.html. 58

Online Glossaries 237

3. Look for quality. The quality of healthcare services varies, but quality can be measured. You should consider the quality of healthcare in deciding among the healthcare plans or options available to you. Not all health plans, doctors, hospitals and other providers give the highest quality care. Fortunately, there is quality information you can use right now to help you compare your healthcare choices. Find out how you can measure quality. Consult the U.S. Department of Health and Human Services publication “Your Guide to Choosing Quality Health Care” on the Internet at www.ahcpr.gov/consumer. 4. Your plan's summary plan description (SPD) provides a wealth of information. Your health plan administrator can provide you with a copy of your plan’s SPD. It outlines your benefits and your legal rights under the Employee Retirement Income Security Act (ERISA), the federal law that protects your health benefits. It should contain information about the coverage of dependents, what services will require a co-pay, and the circumstances under which your employer can change or terminate a health benefits plan. Save the SPD and all other health plan brochures and documents, along with memos or correspondence from your employer relating to health benefits. 5. Assess your benefit coverage as your family status changes. Marriage, divorce, childbirth or adoption, and the death of a spouse are all life events that may signal a need to change your health benefits. You, your spouse and dependent children may be eligible for a special enrollment period under provisions of the Health Insurance Portability and Accountability Act (HIPAA). Even without life-changing events, the information provided by your employer should tell you how you can change benefits or switch plans, if more than one plan is offered. If your spouse's employer also offers a health benefits package, consider coordinating both plans for maximum coverage. 6. Changing jobs and other life events can affect your health benefits. Under the Consolidated Omnibus Budget Reconciliation Act (COBRA), you, your covered spouse, and your dependent children may be eligible to purchase extended health coverage under your employer's plan if you lose your job, change employers, get divorced, or upon occurrence of certain other events. Coverage can range from 18 to 36 months depending on your situation. COBRA applies to most employers with 20 or more workers and requires your plan to notify you of your rights. Most plans require eligible individuals to make their COBRA election within 60 days of the plan's notice. Be sure to follow up with your plan sponsor if you don't receive notice, and make sure you respond within the allotted time.

238 Lyme Disease

7. HIPAA can also help if you are changing jobs, particularly if you have a medical condition. HIPAA generally limits pre-existing condition exclusions to a maximum of 12 months (18 months for late enrollees). HIPAA also requires this maximum period to be reduced by the length of time you had prior “creditable coverage.” You should receive a certificate documenting your prior creditable coverage from your old plan when coverage ends. 8. Plan for retirement. Before you retire, find out what health benefits, if any, extend to you and your spouse during your retirement years. Consult with your employer's human resources office, your union, the plan administrator, and check your SPD. Make sure there is no conflicting information among these sources about the benefits you will receive or the circumstances under which they can change or be eliminated. With this information in hand, you can make other important choices, like finding out if you are eligible for Medicare and Medigap insurance coverage. 9. Know how to file an appeal if your health benefits claim is denied. Understand how your plan handles grievances and where to make appeals of the plan's decisions. Keep records and copies of correspondence. Check your health benefits package and your SPD to determine who is responsible for handling problems with benefit claims. Contact PWBA for customer service assistance if you are unable to obtain a response to your complaint. 10. You can take steps to improve the quality of the healthcare and the health benefits you receive. Look for and use things like Quality Reports and Accreditation Reports whenever you can. Quality reports may contain consumer ratings -- how satisfied consumers are with the doctors in their plan, for instance-- and clinical performance measures -- how well a healthcare organization prevents and treats illness. Accreditation reports provide information on how accredited organizations meet national standards, and often include clinical performance measures. Look for these quality measures whenever possible. Consult “Your Guide to Choosing Quality Health Care” on the Internet at www.ahcpr.gov/consumer.

Medicare and Medicaid Illness strikes both rich and poor families. For low-income families, Medicaid is available to defer the costs of treatment. The Health Care Financing Administration (HCFA) administers Medicare, the nation's largest health insurance program, which covers 39 million Americans. In the following pages, you will learn the basics about Medicare insurance as well as useful

Online Glossaries 239

contact information on how to find more in-depth information about Medicaid.60

Who is Eligible for Medicare? Generally, you are eligible for Medicare if you or your spouse worked for at least 10 years in Medicare-covered employment and you are 65 years old and a citizen or permanent resident of the United States. You might also qualify for coverage if you are under age 65 but have a disability or EndStage Renal disease (permanent kidney failure requiring dialysis or transplant). Here are some simple guidelines: You can get Part A at age 65 without having to pay premiums if: ·

You are already receiving retirement benefits from Social Security or the Railroad Retirement Board.

·

You are eligible to receive Social Security or Railroad benefits but have not yet filed for them.

·

You or your spouse had Medicare-covered government employment.

If you are under 65, you can get Part A without having to pay premiums if: ·

You have received Social Security or Railroad Retirement Board disability benefit for 24 months.

·

You are a kidney dialysis or kidney transplant patient.

Medicare has two parts: ·

Part A (Hospital Insurance). Most people do not have to pay for Part A.

·

Part B (Medical Insurance). Most people pay monthly for Part B. Part A (Hospital Insurance)

Helps Pay For: Inpatient hospital care, care in critical access hospitals (small facilities that give limited outpatient and inpatient services to people in rural areas) and skilled nursing facilities, hospice care, and some home healthcare.

This section has been adapted from the Official U.S. Site for Medicare Information: http://www.medicare.gov/Basics/Overview.asp.

60

240 Lyme Disease

Cost: Most people get Part A automatically when they turn age 65. You do not have to pay a monthly payment called a premium for Part A because you or a spouse paid Medicare taxes while you were working. If you (or your spouse) did not pay Medicare taxes while you were working and you are age 65 or older, you still may be able to buy Part A. If you are not sure you have Part A, look on your red, white, and blue Medicare card. It will show “Hospital Part A” on the lower left corner of the card. You can also call the Social Security Administration toll free at 1-800-772-1213 or call your local Social Security office for more information about buying Part A. If you get benefits from the Railroad Retirement Board, call your local RRB office or 1-800-808-0772. For more information, call your Fiscal Intermediary about Part A bills and services. The phone number for the Fiscal Intermediary office in your area can be obtained from the following Web site: http://www.medicare.gov/Contacts/home.asp. Part B (Medical Insurance) Helps Pay For: Doctors, services, outpatient hospital care, and some other medical services that Part A does not cover, such as the services of physical and occupational therapists, and some home healthcare. Part B helps pay for covered services and supplies when they are medically necessary. Cost: As of 2001, you pay the Medicare Part B premium of $50.00 per month. In some cases this amount may be higher if you did not choose Part B when you first became eligible at age 65. The cost of Part B may go up 10% for each 12-month period that you were eligible for Part B but declined coverage, except in special cases. You will have to pay the extra 10% cost for the rest of your life. Enrolling in Part B is your choice. You can sign up for Part B anytime during a 7-month period that begins 3 months before you turn 65. Visit your local Social Security office, or call the Social Security Administration at 1-800-7721213 to sign up. If you choose to enroll in Part B, the premium is usually taken out of your monthly Social Security, Railroad Retirement, or Civil Service Retirement payment. If you do not receive any of the above payments, Medicare sends you a bill for your part B premium every 3 months. You should receive your Medicare premium bill in the mail by the 10th of the month. If you do not, call the Social Security Administration at 1800-772-1213, or your local Social Security office. If you get benefits from the Railroad Retirement Board, call your local RRB office or 1-800-808-0772. For more information, call your Medicare carrier about bills and services. The

Online Glossaries 241

phone number for the Medicare carrier in your area can be found at the following Web site: http://www.medicare.gov/Contacts/home.asp. You may have choices in how you get your healthcare including the Original Medicare Plan, Medicare Managed Care Plans (like HMOs), and Medicare Private Fee-for-Service Plans.

Medicaid Medicaid is a joint federal and state program that helps pay medical costs for some people with low incomes and limited resources. Medicaid programs vary from state to state. People on Medicaid may also get coverage for nursing home care and outpatient prescription drugs which are not covered by Medicare. You can find more information about Medicaid on the HCFA.gov Web site at http://www.hcfa.gov/medicaid/medicaid.htm. States also have programs that pay some or all of Medicare's premiums and may also pay Medicare deductibles and coinsurance for certain people who have Medicare and a low income. To qualify, you must have: ·

Part A (Hospital Insurance),

·

Assets, such as bank accounts, stocks, and bonds that are not more than $4,000 for a single person, or $6,000 for a couple, and

·

A monthly income that is below certain limits.

For more information on these programs, look at the Medicare Savings Programs brochure, http://www.medicare.gov/Library/PDFNavigation/PDFInterim.asp?Langua ge=English&Type=Pub&PubID=10126. There are also Prescription Drug Assistance Programs available. Find information on these programs which offer discounts or free medications to individuals in need at http://www.medicare.gov/Prescription/Home.asp.

NORD’s Medication Assistance Programs Finally, the National Organization for Rare Disorders, Inc. (NORD) administers medication programs sponsored by humanitarian-minded pharmaceutical and biotechnology companies to help uninsured or underinsured individuals secure life-saving or life-sustaining drugs.61 NORD Adapted from NORD: http://www.rarediseases.org/cgibin/nord/progserv#patient?id=rPIzL9oD&mv_pc=30.

61

242 Lyme Disease

programs ensure that certain vital drugs are available “to those individuals whose income is too high to qualify for Medicaid but too low to pay for their prescribed medications.” The program has standards for fairness, equity, and unbiased eligibility. It currently covers some 14 programs for nine pharmaceutical companies. NORD also offers early access programs for investigational new drugs (IND) under the approved “Treatment INDs” programs of the Food and Drug Administration (FDA). In these programs, a limited number of individuals can receive investigational drugs that have yet to be approved by the FDA. These programs are generally designed for rare diseases or disorders. For more information, visit www.rarediseases.org.

Additional Resources In addition to the references already listed in this chapter, you may need more information on health insurance, hospitals, or the healthcare system in general. The NIH has set up an excellent guidance Web site that addresses these and other issues. Topics include:62 ·

Health Insurance: http://www.nlm.nih.gov/medlineplus/healthinsurance.html

·

Health Statistics: http://www.nlm.nih.gov/medlineplus/healthstatistics.html

·

HMO and Managed Care: http://www.nlm.nih.gov/medlineplus/managedcare.html

·

Hospice Care: http://www.nlm.nih.gov/medlineplus/hospicecare.html

·

Medicaid: http://www.nlm.nih.gov/medlineplus/medicaid.html

·

Medicare: http://www.nlm.nih.gov/medlineplus/medicare.html

·

Nursing Homes and Long-term Care: http://www.nlm.nih.gov/medlineplus/nursinghomes.html

·

Patient's Rights, Confidentiality, Informed Consent, Ombudsman Programs, Privacy and Patient Issues: http://www.nlm.nih.gov/medlineplus/patientissues.html

·

Veteran's Health, Persian Gulf War, Gulf War Syndrome, Agent Orange: http://www.nlm.nih.gov/medlineplus/veteranshealth.html

You can access this information at: http://www.nlm.nih.gov/medlineplus/healthsystem.html.

62

Online Glossaries 243

ONLINE GLOSSARIES The Internet provides access to a number of free-to-use medical dictionaries and glossaries. The National Library of Medicine has compiled the following list of online dictionaries: ·

ADAM Medical Encyclopedia (A.D.A.M., Inc.), comprehensive medical reference: http://www.nlm.nih.gov/medlineplus/encyclopedia.html

·

MedicineNet.com Medical Dictionary (MedicineNet, Inc.): http://www.medterms.com/Script/Main/hp.asp

·

Merriam-Webster Medical Dictionary (Inteli-Health, Inc.): http://www.intelihealth.com/IH/

·

Multilingual Glossary of Technical and Popular Medical Terms in Eight European Languages (European Commission) - Danish, Dutch, English, French, German, Italian, Portuguese, and Spanish: http://allserv.rug.ac.be/~rvdstich/eugloss/welcome.html

·

On-line Medical Dictionary (CancerWEB): http://www.graylab.ac.uk/omd/

·

Technology Glossary (National Library of Medicine) - Health Care Technology: http://www.nlm.nih.gov/nichsr/ta101/ta10108.htm

·

Terms and Definitions (Office of Rare Diseases): http://rarediseases.info.nih.gov/ord/glossary_a-e.html

Beyond these, MEDLINEplus contains a very user-friendly encyclopedia covering every aspect of medicine (licensed from A.D.A.M., Inc.). The ADAM Medical Encyclopedia Web site address is http://www.nlm.nih.gov/medlineplus/encyclopedia.html. ADAM is also available on commercial Web sites such as Web MD (http://my.webmd.com/adam/asset/adam_disease_articles/a_to_z/a) and drkoop.com (http://www.drkoop.com/). Topics of interest can be researched by using keywords before continuing elsewhere, as these basic definitions and concepts will be useful in more advanced areas of research. You may choose to print various pages specifically relating to Lyme disease and keep them on file. The NIH, in particular, suggests that patients with Lyme disease visit the following Web sites in the ADAM Medical Encyclopedia:

244 Lyme Disease

·

Basic Guidelines for Lyme Disease Lyme disease Web site: http://www.nlm.nih.gov/medlineplus/ency/article/001319.htm Lyme disease - primary Web site: http://www.nlm.nih.gov/medlineplus/ency/article/000670.htm Lyme disease - secondary Web site: http://www.nlm.nih.gov/medlineplus/ency/article/000625.htm Lyme disease - tertiary Web site: http://www.nlm.nih.gov/medlineplus/ency/article/000669.htm Lyme disease antibody Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003554.htm

·

Signs & Symptoms for Lyme Disease Behavior, unusual or strange Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003255.htm Blurred vision Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003029.htm Confusion Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003205.htm Consciousness, decreased Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003202.htm

Online Glossaries 245

Depression Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003213.htm Erythema Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003220.htm Eyelid drooping Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003035.htm Facial paralysis Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003028.htm Fainting Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003092.htm Fatigue Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003088.htm Fever Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003090.htm Hallucinations Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003258.htm Headache Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003024.htm Heart palpitations Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003081.htm

246 Lyme Disease

Itching, overall Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003217.htm Joint inflammation Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003261.htm Joint stiffness Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003261.htm Lethargy Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003088.htm Malaise Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003089.htm Memory loss Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003257.htm Mood changes Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003213.htm Movement, dysfunctional Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003203.htm Muscle Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003193.htm Muscle pain Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003178.htm

Online Glossaries 247

Muscle pains Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003178.htm Myalgia Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003178.htm Nausea and vomiting Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003117.htm Neck pain Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003025.htm Numbness Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003206.htm Numbness and tingling Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003206.htm Paralysis Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003190.htm Rash Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003220.htm Sensitivity to light Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003041.htm Skin lesions Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003220.htm

248 Lyme Disease

Skin rash Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003220.htm Speech impairment Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003204.htm Stiff neck Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003261.htm Tingling Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003206.htm Weakness Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003174.htm ·

Diagnostics and Tests for Lyme Disease Biopsy Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003416.htm Blood pressure Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003398.htm Chest X-ray Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003804.htm CT Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003330.htm ECG Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003868.htm

Online Glossaries 249

Echocardiogram Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003869.htm ELISA Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003332.htm Immunofluorescence Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003521.htm MRI Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003335.htm Nuclear ventriculography Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003822.htm Serology Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003511.htm Skin biopsy Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003840.htm Venipuncture Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003423.htm Western blot Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003538.htm ·

Background Topics for Lyme Disease Lyme disease Web site: http://www.nlm.nih.gov/medlineplus/ency/article/001319.htm

250 Lyme Disease

Acute Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002215.htm Adolescent test or procedure preparation Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002054.htm Antibodies Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002223.htm Antibody Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002223.htm Bleeding Web site: http://www.nlm.nih.gov/medlineplus/ency/article/000045.htm Central nervous system Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002311.htm Chronic Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002312.htm Incidence Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002387.htm Infant test or procedure preparation Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002055.htm Lyme disease Web site: http://www.nlm.nih.gov/medlineplus/ency/article/001319.htm

Online Glossaries 251

Physical examination Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002274.htm Preschooler test or procedure preparation Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002057.htm Schoolage test or procedure preparation Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002058.htm Tick Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002856.htm Tick bite Web site: http://www.nlm.nih.gov/medlineplus/ency/article/000033.htm Tick bite Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002856.htm Ticks Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002856.htm Titer Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002328.htm Toddler test or procedure preparation Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002056.htm

252 Lyme Disease

Online Dictionary Directories The following are additional online directories compiled by the National Library of Medicine, including a number of specialized medical dictionaries and glossaries: ·

Medical Dictionaries: Medical & Biological (World Health Organization): http://www.who.int/hlt/virtuallibrary/English/diction.htm#Medical

·

MEL-Michigan Electronic Library List of Online Health and Medical Dictionaries (Michigan Electronic Library): http://mel.lib.mi.us/health/health-dictionaries.html

·

Patient Education: Glossaries (DMOZ Open Directory Project): http://dmoz.org/Health/Education/Patient_Education/Glossaries/

·

Web of Online Dictionaries (Bucknell University): http://www.yourdictionary.com/diction5.html#medicine

Glossary 253

LYME DISEASE GLOSSARY The following is a complete glossary of terms used in this sourcebook. The definitions are derived from official public sources including the National Institutes of Health [NIH] and the European Union [EU]. After this glossary, we list a number of additional hardbound and electronic glossaries and dictionaries that you may wish to consult. Abrasion: 1. the wearing away of a substance or structure (such as the skin or the teeth) through some unusual or abnormal mechanical process. 2. an area of body surface denuded of skin or mucous membrane by some unusual or abnormal mechanical process. [EU] Accommodation: distances. [EU]

Adjustment, especially that of the eye for various

Actinomycosis: Infections with bacteria of the genus actinomyces. [NIH] Adenoma: A benign epithelial tumour in which the cells form recognizable glandular structures or in which the cells are clearly derived from glandular epithelium. [EU] Adjuvant: A substance which aids another, such as an auxiliary remedy; in immunology, nonspecific stimulator (e.g., BCG vaccine) of the immune response. [EU] Adsorption: The attachment of one substance to the surface of another; the concentration of a gas or a substance in solution in a liquid on a surface in contact with the gas or liquid, resulting in a relatively high concentration of the gas or solution at the surface. [EU] Alleles: Mutually exclusive forms of the same gene, occupying the same locus on homologous chromosomes, and governing the same biochemical and developmental process. [NIH] Amoxicillin: A broad-spectrum semisynthetic antibiotic similar to ampicillin except that its resistance to gastric acid permits higher serum levels with oral administration. [NIH] Anaerobic: 1. lacking molecular oxygen. 2. growing, living, or occurring in the absence of molecular oxygen; pertaining to an anaerobe. [EU] Anemia: A reduction in the number of circulating erythrocytes or in the quantity of hemoglobin. [NIH] Antibiotic: A chemical substance produced by a microorganism which has the capacity, in dilute solutions, to inhibit the growth of or to kill other microorganisms. Antibiotics that are sufficiently nontoxic to the host are used as chemotherapeutic agents in the treatment of infectious diseases of

254 Lyme Disease

man, animals and plants. [EU] Antibody: An immunoglobulin molecule that has a specific amino acid sequence by virtue of which it interacts only with the antigen that induced its synthesis in cells of the lymphoid series (especially plasma cells), or with antigen closely related to it. Antibodies are classified according to their ode of action as agglutinins, bacteriolysins, haemolysins, opsonins, precipitins, etc. [EU] Antigen: Any substance which is capable, under appropriate conditions, of inducing a specific immune response and of reacting with the products of that response, that is, with specific antibody or specifically sensitized Tlymphocytes, or both. Antigens may be soluble substances, such as toxins and foreign proteins, or particulate, such as bacteria and tissue cells; however, only the portion of the protein or polysaccharide molecule known as the antigenic determinant (q.v.) combines with antibody or a specific receptor on a lymphocyte. Abbreviated Ag. [EU] Antimicrobial: Killing microorganisms, or suppressing their multiplication or growth. [EU] Antiseptic: A substance that inhibits the growth and development of microorganisms without necessarily killing them. [EU] Anxiety: The unpleasant emotional state consisting of psychophysiological responses to anticipation of unreal or imagined danger, ostensibly resulting from unrecognized intrapsychic conflict. Physiological concomitants include increased heart rate, altered respiration rate, sweating, trembling, weakness, and fatigue; psychological concomitants include feelings of impending danger, powerlessness, apprehension, and tension. [EU] Arteries: The vessels carrying blood away from the heart. [NIH] Arteritis: Inflammation of an artery. [NIH] Arthralgia: Pain in a joint. [EU] Aseptic: Free from infection or septic material; sterile. [EU] Assay: Determination of the amount of a particular constituent of a mixture, or of the biological or pharmacological potency of a drug. [EU] Asymptomatic: Showing or causing no symptoms. [EU] Autoantigens: Endogenous tissue constituents that have the ability to interact with autoantibodies and cause an immune response. [NIH] Autoimmunity: Process whereby the immune system reacts against the body's own tissues. Autoimmunity may produce or be caused by autoimmune diseases. [NIH] Azithromycin: A semi-synthetic macrolide antibiotic structurally related to erythromycin. It has been used in the treatment of Mycobacterium avium

Glossary 255

intracellulare infections, toxoplasmosis, and cryptosporidiosis. [NIH] Babesiosis: A group of tick-borne diseases of mammals including zoonoses in humans. They are caused by protozoans of the genus babesia, which parasitize erythrocytes, producing hemolysis. In the U.S., the organism's natural host is mice and transmission is by the deer tick ixodes scapularis. [NIH]

Bacteria: Unicellular prokaryotic microorganisms which generally possess rigid cell walls, multiply by cell division, and exhibit three principal forms: round or coccal, rodlike or bacillary, and spiral or spirochetal. [NIH] Biochemical: Relating to biochemistry; characterized by, produced by, or involving chemical reactions in living organisms. [EU] Biometry: The use of statistical methods to analyze biological observations and phenomena. [NIH] Biopsy: The removal and examination, usually microscopic, of tissue from the living body, performed to establish precise diagnosis. [EU] Blastomycosis: A fungal infection that may appear in two forms: 1) a primary lesion characterized by the formation of a small cutaneous nodule and small nodules along the lymphatics that may heal within several months; and 2) chronic granulomatous lesions characterized by thick crusts, warty growths, and unusual vascularity and infection in the middle or upper lobes of the lung. [NIH] Blister: Visible accumulations of fluid within or beneath the epidermis. [NIH] Borrelia: A genus of gram-negative, anaerobic, helical bacteria, various species of which produce relapsing fever in man and other animals. [NIH] Calcinosis: Pathologic deposition of calcium salts in tissues. [NIH] Candidiasis: Infection with a fungus of the genus Candida. It is usually a superficial infection of the moist cutaneous areas of the body, and is generally caused by C. albicans; it most commonly involves the skin (dermatocandidiasis), oral mucous membranes (thrush, def. 1), respiratory tract (bronchocandidiasis), and vagina (vaginitis). Rarely there is a systemic infection or endocarditis. Called also moniliasis, candidosis, oidiomycosis, and formerly blastodendriosis. [EU] Carbohydrate: An aldehyde or ketone derivative of a polyhydric alcohol, particularly of the pentahydric and hexahydric alcohols. They are so named because the hydrogen and oxygen are usually in the proportion to form water, (CH2O)n. The most important carbohydrates are the starches, sugars, celluloses, and gums. They are classified into mono-, di-, tri-, poly- and heterosaccharides. [EU] Cardiomyopathy: A general diagnostic term designating primary myocardial disease, often of obscure or unknown etiology. [EU]

256 Lyme Disease

Cardiovascular: Pertaining to the heart and blood vessels. [EU] Carnitine: Constituent of striated muscle and liver. It is used therapeutically to stimulate gastric and pancreatic secretions and in the treatment of hyperlipoproteinemias. [NIH] Ceftriaxone: Broad-spectrum cephalosporin antibiotic with a very long halflife and high penetrability to usually inaccessible infections, including those involving the meninges, eyes, inner ears, and urinary tract. [NIH] Cefuroxime: Broad-spectrum cephalosporin antibiotic resistant to betalactamase. It has been proposed for infections with gram-negative and grampositive organisms, gonorrhea, and haemophilus. [NIH] Cerebrospinal: Pertaining to the brain and spinal cord. [EU] Chemotherapy: The treatment of disease by means of chemicals that have a specific toxic effect upon the disease - producing microorganisms or that selectively destroy cancerous tissue. [EU] Chlamydia: A genus of the family chlamydiaceae whose species cause a variety of diseases in vertebrates including humans, mice, and swine. Chlamydia species are gram-negative and produce glycogen. The type species is chlamydia trachomatis. [NIH] Cholesterol: The principal sterol of all higher animals, distributed in body tissues, especially the brain and spinal cord, and in animal fats and oils. [NIH] Coagulation: 1. the process of clot formation. 2. in colloid chemistry, the solidification of a sol into a gelatinous mass; an alteration of a disperse phase or of a dissolved solid which causes the separation of the system into a liquid phase and an insoluble mass called the clot or curd. Coagulation is usually irreversible. 3. in surgery, the disruption of tissue by physical means to form an amorphous residuum, as in electrocoagulation and photocoagulation. [EU] Collagen: The protein substance of the white fibres (collagenous fibres) of skin, tendon, bone, cartilage, and all other connective tissue; composed of molecules of tropocollagen (q.v.), it is converted into gelatin by boiling. collagenous pertaining to collagen; forming or producing collagen. [EU] Concomitant: Accompanying; accessory; joined with another. [EU] Conjunctivitis: Inflammation of the conjunctiva, generally consisting of conjunctival hyperaemia associated with a discharge. [EU] Cutaneous: Pertaining to the skin; dermal; dermic. [EU] Cystitis: Inflammation of the urinary bladder. [EU] Cytokines: Non-antibody proteins secreted by inflammatory leukocytes and some non-leukocytic cells, that act as intercellular mediators. They differ from classical hormones in that they are produced by a number of tissue or cell types rather than by specialized glands. They generally act locally in a

Glossary 257

paracrine or autocrine rather than endocrine manner. [NIH] Cytomegalovirus: A genus of the family herpesviridae, subfamily betaherpesvirinae, infecting the salivary glands, liver, spleen, lungs, eyes, and other organs, in which they produce characteristically enlarged cells with intranuclear inclusions. Infection with Cytomegalovirus is also seen as an opportunistic infection in AIDS. [NIH] Cytotoxic: Pertaining to or exhibiting cytotoxicity. [EU] Deet: A compound used as a topical insect repellent that may cause irritation to eyes and mucous membranes, but not to the skin. [NIH] Degenerative: Undergoing degeneration : tending to degenerate; having the character of or involving degeneration; causing or tending to cause degeneration. [EU] Dermatitis: Inflammation of the skin. [EU] Dermatology: A medical specialty concerned with the skin, its structure, functions, diseases, and treatment. [NIH] Diarrhea: Passage of excessively liquid or excessively frequent stools. [NIH] Dizziness: An imprecise term which may refer to a sense of spatial disorientation, motion of the environment, or lightheadedness. [NIH] Doxycycline: A synthetic tetracycline derivative with a range of antimicrobial activity and mode of action similar to that of tetracycline, but more effective against many species. Animal studies suggest that it may cause less tooth staining than other tetracyclines. [NIH] Dysphoria: Disquiet; restlessness; malaise. [EU] Dysplasia: Abnormality of development; in pathology, alteration in size, shape, and organization of adult cells. [EU] Dystrophy: Any disorder arising from defective or faulty nutrition, especially the muscular dystrophies. [EU] Eczema: A pruritic papulovesicular dermatitis occurring as a reaction to many endogenous and exogenous agents, characterized in the acute stage by erythema, edema associated with a serous exudate between the cells of the epidermis (spongiosis) and an inflammatory infiltrate in the dermis, oozing and vesiculation, and crusting and scaling; and in the more chronic stages by lichenification or thickening or both, signs of excoriations, and hyperpigmentation or hypopigmentation or both. Atopic dermatitis is the most common type of dermatitis. Called also eczematous dermatitis. [EU] Ehrlichiosis: A tick-borne disease characterized by fever, headache, myalgias, anorexia, and occasionally rash. In humans the disease is caused by ehrlichia chaffeensis, in dogs it is caused by E. canis, and in horses, E. equi. [NIH]

258 Lyme Disease

Encephalomyelitis: A general term indicating inflammation of the brain and spinal cord, often used to indicate an infectious process, but also applicable to a variety of autoimmune and toxic-metabolic conditions. There is significant overlap regarding the usage of this term and encephalitis in the literature. [NIH] Endemic: Present or usually prevalent in a population or geographical area at all times; said of a disease or agent. Called also endemial. [EU] Endocarditis: Exudative and proliferative inflammatory alterations of the endocardium, characterized by the presence of vegetations on the surface of the endocardium or in the endocardium itself, and most commonly involving a heart valve, but sometimes affecting the inner lining of the cardiac chambers or the endocardium elsewhere. It may occur as a primary disorder or as a complication of or in association with another disease. [EU] Endocrinology: A subspecialty of internal medicine concerned with the metabolism, physiology, and disorders of the endocrine system. [NIH] Endometriosis: A condition in which tissue more or less perfectly resembling the uterine mucous membrane (the endometrium) and containing typical endometrial granular and stromal elements occurs aberrantly in various locations in the pelvic cavity; called also adenomyosis externa and endometriosis externa. [EU] Enzyme: A protein molecule that catalyses chemical reactions of other substances without itself being destroyed or altered upon completion of the reactions. Enzymes are classified according to the recommendations of the Nomenclature Committee of the International Union of Biochemistry. Each enzyme is assigned a recommended name and an Enzyme Commission (EC) number. They are divided into six main groups; oxidoreductases, transferases, hydrolases, lyases, isomerases, and ligases. [EU] Epidemic: Occurring suddenly in numbers clearly in excess of normal expectancy; said especially of infectious diseases but applied also to any disease, injury, or other health-related event occurring in such outbreaks. [EU] Epitopes: Sites on an antigen that interact with specific antibodies. [NIH] Erythema: A name applied to redness of the skin produced by congestion of the capillaries, which may result from a variety of causes, the etiology or a specific type of lesion often being indicated by a modifying term. [EU] Erythromycin: A bacteriostatic antibiotic substance produced by Streptomyces erythreus. Erythromycin A is considered its major active component. In sensitive organisms, it inhibits protein synthesis by binding to 50S ribosomal subunits. This binding process inhibits peptidyl transferase activity and interferes with translocation of amino acids during translation and assembly of proteins. [NIH]

Glossary 259

Extremity: A limb; an arm or leg (membrum); sometimes applied specifically to a hand or foot. [EU] Fatigue: The state of weariness following a period of exertion, mental or physical, characterized by a decreased capacity for work and reduced efficiency to respond to stimuli. [NIH] Fibroblasts: Connective tissue cells which secrete an extracellular matrix rich in collagen and other macromolecules. [NIH] Flagellin: A protein with a molecular weight of 40,000 isolated from bacterial flagella. At appropriate pH and salt concentration, three flagellin monomers can spontaneously reaggregate to form structures which appear identical to intact flagella. [NIH] Fungicide: An agent that destroys fungi. [EU] Gastrointestinal: Pertaining to or communicating with the stomach and intestine, as a gastrointestinal fistula. [EU] Genotype: The genetic constitution of the individual; the characterization of the genes. [NIH] Glomerular: Pertaining to or of the nature of a glomerulus, especially a renal glomerulus. [EU] Glomerulonephritis: A variety of nephritis characterized by inflammation of the capillary loops in the glomeruli of the kidney. It occurs in acute, subacute, and chronic forms and may be secondary to haemolytic streptococcal infection. Evidence also supports possible immune or autoimmune mechanisms. [EU] Glucose: D-glucose, a monosaccharide (hexose), C6H12O6, also known as dextrose (q.v.), found in certain foodstuffs, especially fruits, and in the normal blood of all animals. It is the end product of carbohydrate metabolism and is the chief source of energy for living organisms, its utilization being controlled by insulin. Excess glucose is converted to glycogen and stored in the liver and muscles for use as needed and, beyond that, is converted to fat and stored as adipose tissue. Glucose appears in the urine in diabetes mellitus. [EU] Gluten: The protein of wheat and other grains which gives to the dough its tough elastic character. [EU] Gout: Hereditary metabolic disorder characterized by recurrent acute arthritis, hyperuricemia and deposition of sodium urate in and around the joints, sometimes with formation of uric acid calculi. [NIH] Granulocytes: Leukocytes with abundant granules in the cytoplasm. They are divided into three groups: neutrophils, eosinophils, and basophils. [NIH] Grasses: A large family, gramineae, of narrow-leaved herbaceous monocots.

260 Lyme Disease

Many grasses produce highly allergenic pollens and are hosts to cattle parasites and toxic fungi. [NIH] Haplotypes: The genetic constitution of individuals with respect to one member of a pair of allelic genes, or sets of genes that are closely linked and tend to be inherited together such as those of the major histocompatibility complex. [NIH] Hemorrhage: Bleeding or escape of blood from a vessel. [NIH] Hepatic: Pertaining to the liver. [EU] Hepatitis: Inflammation of the liver. [EU] Hepatomegaly: Enlargement of the liver. [EU] Herpes: Any inflammatory skin disease caused by a herpesvirus and characterized by the formation of clusters of small vesicles. When used alone, the term may refer to herpes simplex or to herpes zoster. [EU] Histocompatibility: The degree of antigenic similarity between the tissues of different individuals, which determines the acceptance or rejection of allografts. [NIH] Homologous: Corresponding in structure, position, origin, etc., as (a) the feathers of a bird and the scales of a fish, (b) antigen and its specific antibody, (c) allelic chromosomes. [EU] Humoral: Of, relating to, proceeding from, or involving a bodily humour now often used of endocrine factors as opposed to neural or somatic. [EU] Hybridization: The genetic process of crossbreeding to produce a hybrid. Hybrid nucleic acids can be formed by nucleic acid hybridization of DNA and RNA molecules. Protein hybridization allows for hybrid proteins to be formed from polypeptide chains. [NIH] Hybridomas: Cells artificially created by fusion of activated lymphocytes with neoplastic cells. The resulting hybrid cells are cloned and produce pure or "monoclonal" antibodies or T-cell products, identical to those produced by the immunologically competent parent, and continually grow and divide as the neoplastic parent. [NIH] Hyperostosis: Hypertrophy of bone; exostosis. [EU] Idiopathic: Of the nature of an idiopathy; self-originated; of unknown causation. [EU] Immunoassay: Immunochemical assay or detection of a substance by serologic or immunologic methods. Usually the substance being studied serves as antigen both in antibody production and in measurement of antibody by the test substance. [NIH] Inflammation: A pathological process characterized by injury or destruction of tissues caused by a variety of cytologic and chemical reactions. It is

Glossary 261

usually manifested by typical signs of pain, heat, redness, swelling, and loss of function. [NIH] Influenza: An acute viral infection involving the respiratory tract. It is marked by inflammation of the nasal mucosa, the pharynx, and conjunctiva, and by headache and severe, often generalized, myalgia. [NIH] Inhalation: The drawing of air or other substances into the lungs. [EU] Interstitial: Pertaining to or situated between parts or in the interspaces of a tissue. [EU] Iodine: A nonmetallic element of the halogen group that is represented by the atomic symbol I, atomic number 53, and atomic weight of 126.90. It is a nutritionally essential element, especially important in thyroid hormone synthesis. In solution, it has anti-infective properties and is used topically. [NIH]

Isoenzymes: One of various structurally related forms of an enzyme, each having the same mechanism but with differing chemical, physical, or immunological characteristics. [NIH] Keratitis: Inflammation of the cornea. [EU] Kinetic: Pertaining to or producing motion. [EU] Laryngitis: Inflammation of the larynx, a condition attended with dryness and soreness of the throat, hoarseness, cough and dysphagia. [EU] Leprosy: A chronic granulomatous infection caused by mycobacterium leprae. The granulomatous lesions are manifested in the skin, the mucous membranes, and the peripheral nerves. Two polar or principal types are lepromatous and tuberculoid. [NIH] Lethargy: Abnormal drowsiness or stupor; a condition of indifference. [EU] Leukapheresis: The preparation of leukocyte concentrates with the return of red cells and leukocyte-poor plasma to the donor. [NIH] Lipoprotein: Any of the lipid-protein complexes in which lipids are transported in the blood; lipoprotein particles consist of a spherical hydrophobic core of triglycerides or cholesterol esters surrounded by an amphipathic monolayer of phospholipids, cholesterol, and apolipoproteins; the four principal classes are high-density, low-density, and very-lowdensity lipoproteins and chylomicrons. [EU] Liquifilm: A thin liquid layer of coating. [EU] Lumbar: Pertaining to the loins, the part of the back between the thorax and the pelvis. [EU] Lupus: A form of cutaneous tuberculosis. It is seen predominantly in women and typically involves the nasal, buccal, and conjunctival mucosa. [NIH]

262 Lyme Disease

Malabsorption: Impaired intestinal absorption of nutrients. [EU] Malaise: A vague feeling of bodily discomfort. [EU] Masticatory: 1. subserving or pertaining to mastication; affecting the muscles of mastication. 2. a remedy to be chewed but not swallowed. [EU] Mastitis: Inflammation of the mammary gland, or breast. [EU] Membrane: A thin layer of tissue which covers a surface, lines a cavity or divides a space or organ. [EU] Meningitis: Inflammation of the meninges. When it affects the dura mater, the disease is termed pachymeningitis; when the arachnoid and pia mater are involved, it is called leptomeningitis, or meningitis proper. [EU] Microbiological: Pertaining to microbiology : the science that deals with microorganisms, including algae, bacteria, fungi, protozoa and viruses. [EU] Microbiology: The study of microorganisms such as fungi, bacteria, algae, archaea, and viruses. [NIH] Molecular: Of, pertaining to, or composed of molecules : a very small mass of matter. [EU] Mononucleosis: The presence of an abnormally large number of mononuclear leucocytes (monocytes) in the blood. The term is often used alone to refer to infectious mononucleosis. [EU] Mutagenic: Inducing genetic mutation. [EU] Mycoplasma: A genus of gram-negative, facultatively anaerobic bacteria bounded by a plasma membrane only. Its organisms are parasites and pathogens, found on the mucous membranes of humans, animals, and birds. [NIH]

Mycotic: Pertaining to a mycosis; caused by fungi. [EU] Myopathy: Any disease of a muscle. [EU] Neurology: A medical specialty concerned with the study of the structures, functions, and diseases of the nervous system. [NIH] Neuropsychology: A branch of psychology which investigates the correlation between experience or behavior and the basic neurophysiological processes. The term neuropsychology stresses the dominant role of the nervous system. It is a more narrowly defined field than physiological psychology or psychophysiology. [NIH] Niacin: Water-soluble vitamin of the B complex occurring in various animal and plant tissues. Required by the body for the formation of coenzymes NAD and NADP. Has pellagra-curative, vasodilating, and antilipemic properties. [NIH] Ophthalmic: Pertaining to the eye. [EU]

Glossary 263

Ophthalmology: A surgical specialty concerned with the structure and function of the eye and the medical and surgical treatment of its defects and diseases. [NIH] Orbital: Pertaining to the orbit (= the bony cavity that contains the eyeball). [EU]

Orofacial: Of or relating to the mouth and face. [EU] Orthopaedic: Pertaining to the correction of deformities of the musculoskeletal system; pertaining to orthopaedics. [EU] Orthopedics: A surgical specialty which utilizes medical, surgical, and physical methods to treat and correct deformities, diseases, and injuries to the skeletal system, its articulations, and associated structures. [NIH] Osteoarthritis: Noninflammatory degenerative joint disease occurring chiefly in older persons, characterized by degeneration of the articular cartilage, hypertrophy of bone at the margins, and changes in the synovial membrane. It is accompanied by pain and stiffness, particularly after prolonged activity. [EU] Osteogenesis: The histogenesis of bone including ossification. It occurs continuously but particularly in the embryo and child and during fracture repair. [NIH] Osteomalacia: A condition marked by softening of the bones (due to impaired mineralization, with excess accumulation of osteoid), with pain, tenderness, muscular weakness, anorexia, and loss of weight, resulting from deficiency of vitamin D and calcium. [EU] Osteomyelitis: Inflammation of bone caused by a pyogenic organism. It may remain localized or may spread through the bone to involve the marrow, cortex, cancellous tissue, and periosteum. [EU] Osteopetrosis: Excessive formation of dense trabecular bone leading to pathological fractures, osteitis, splenomegaly with infarct, anemia, and extramedullary hemopoiesis. [NIH] Osteoporosis: Reduction in the amount of bone mass, leading to fractures after minimal trauma. [EU] Otolaryngology: A surgical specialty concerned with the study and treatment of disorders of the ear, nose, and throat. [NIH] Overdose: 1. to administer an excessive dose. 2. an excessive dose. [EU] Pacemaker: An object or substance that influences the rate at which a certain phenomenon occurs; often used alone to indicate the natural cardiac pacemaker or an artificial cardiac pacemaker. In biochemistry, a substance whose rate of reaction sets the pace for a series of interrelated reactions. [EU] Palpation: Application of fingers with light pressure to the surface of the body to determine consistence of parts beneath in physical diagnosis;

264 Lyme Disease

includes palpation for determining the outlines of organs. [NIH] Papillomavirus: A genus of papovaviridae causing proliferation of the epithelium, which may lead to malignancy. A wide range of animals are infected including humans, chimpanzees, cattle, rabbits, dogs, and horses. [NIH]

Papule: A small circumscribed, superficial, solid elevation of the skin. [EU] Paralysis: Loss or impairment of motor function in a part due to lesion of the neural or muscular mechanism; also by analogy, impairment of sensory function (sensory paralysis). In addition to the types named below, paralysis is further distinguished as traumatic, syphilitic, toxic, etc., according to its cause; or as obturator, ulnar, etc., according to the nerve part, or muscle specially affected. [EU] Parvovirus: A genus of the family parvoviridae, subfamily parvovirinae, infecting a variety of vertebrates including humans. Parvoviruses are responsible for a number of important diseases but also can be nonpathogenic in certain hosts. The type species is mice minute virus. [NIH] Pathogen: Any disease-producing microorganism. [EU] Pathologic: 1. indicative of or caused by a morbid condition. 2. pertaining to pathology (= branch of medicine that treats the essential nature of the disease, especially the structural and functional changes in tissues and organs of the body caused by the disease). [EU] Pediatrics: A medical specialty concerned with maintaining health and providing medical care to children from birth to adolescence. [NIH] Penicillin V: A broad-spectrum penicillin antibiotic used orally in the treatment of mild to moderate infections by susceptible gram-positive organisms. [NIH] Perinatal: Pertaining to or occurring in the period shortly before and after birth; variously defined as beginning with completion of the twentieth to twenty-eighth week of gestation and ending 7 to 28 days after birth. [EU] Peromyscus: A genus of the subfamily Hesperomyinae consisting of 49 species. Two of these are widely used in medical research. They are P. leucopus, or the white-footed mouse, and P. maniculatus, or the deer mouse. [NIH]

Phenotype: The outward appearance of the individual. It is the product of interactions between genes and between the genotype and the environment. This includes the killer phenotype, characteristic of YEASTS. [NIH] Photosensitivity: An abnormal cutaneous response involving the interaction between photosensitizing substances and sunlight or filtered or artificial light at wavelengths of 280-400 mm. There are two main types : photoallergy and photoxicity. [EU]

Glossary 265

Physiologic: Normal; not pathologic; characteristic of or conforming to the normal functioning or state of the body or a tissue or organ; physiological. [EU]

Plague: An acute infectious disease caused by yersinia pestis that affects humans, wild rodents, and their ectoparasites. This condition persists due to its firm entrenchment in sylvatic rodent-flea ecosystems throughout the world. Bubonic plague is the most common form. [NIH] Poisoning: A condition or physical state produced by the ingestion, injection or inhalation of, or exposure to a deleterious agent. [NIH] Polyarthritis: An inflammation of several joints together. [EU] Polypeptide: A peptide which on hydrolysis yields more than two amino acids; called tripeptides, tetrapeptides, etc. according to the number of amino acids contained. [EU] Potassium: An element that is in the alkali group of metals. It has an atomic symbol K, atomic number 19, and atomic weight 39.10. It is the chief cation in the intracellular fluid of muscle and other cells. Potassium ion is a strong electrolyte and it plays a significant role in the regulation of fluid volume and maintenance of the water-electrolyte balance. [NIH] Premenstrual: Occurring before menstruation. [EU] Prenatal: Existing or occurring before birth, with reference to the fetus. [EU] Probenecid: The prototypical uricosuric agent. It inhibits the renal excretion of organic anions and reduces tubular reabsorption of urate. Probenecid has also been used to treat patients with renal impairment, and, because it reduces the renal tubular excretion of other drugs, has been used as an adjunct to antibacterial therapy. [NIH] Progesterone: Pregn-4-ene-3,20-dione. The principal progestational hormone of the body, secreted by the corpus luteum, adrenal cortex, and placenta. Its chief function is to prepare the uterus for the reception and development of the fertilized ovum. It acts as an antiovulatory agent when administered on days 5-25 of the menstrual cycle. [NIH] Progressive: Advancing; going forward; going from bad to worse; increasing in scope or severity. [EU] Proteins: Polymers of amino acids linked by peptide bonds. The specific sequence of amino acids determines the shape and function of the protein. [NIH]

Psychiatric: Pertaining to or within the purview of psychiatry. [EU] Psychosomatic: Pertaining to the mind-body relationship; having bodily symptoms of psychic, emotional, or mental origin; called also psychophysiologic. [EU] Pulmonary: Pertaining to the lungs. [EU]

266 Lyme Disease

Radon: Radon. A naturally radioactive element with atomic symbol Rn, atomic number 86, and atomic weight 222. It is a member of the noble gas family and released during the decay of radium and found in soil. There is a link between exposure to radon and lung cancer. [NIH] Reagent: A substance employed to produce a chemical reaction so as to detect, measure, produce, etc., other substances. [EU] Recombinant: 1. a cell or an individual with a new combination of genes not found together in either parent; usually applied to linked genes. [EU] Rectal: Pertaining to the rectum (= distal portion of the large intestine). [EU] Reflex: 1; reflected. 2. a reflected action or movement; the sum total of any particular involuntary activity. [EU] Reinfection: A second infection by the same pathogenic agent, or a second infection of an organ such as the kidney by a different pathogenic agent. [EU] Respiratory: Pertaining to respiration. [EU] Retreatment: The therapy of the same disease in a patient, with the same agent or procedure repeated after initial treatment, or with an additional or alternate measure or follow-up. It does not include therapy which requires more than one administration of a therapeutic agent or regimen. Retreatment is often used with reference to a different modality when the original one was inadequate, harmful, or unsuccessful. [NIH] Rheumatoid: Resembling rheumatism. [EU] Rheumatology: A subspecialty of internal medicine concerned with the study of inflammatory or degenerative processes and metabolic derangement of connective tissue structures which pertain to a variety of musculoskeletal disorders, such as arthritis. [NIH] Riboflavin: Nutritional factor found in milk, eggs, malted barley, liver, kidney, heart, and leafy vegetables. The richest natural source is yeast. It occurs in the free form only in the retina of the eye, in whey, and in urine; its principal forms in tissues and cells are as FMN and FAD. [NIH] Ricinus: An euphorbiaceous plant with very toxic seeds. The castor bean, castor oil, ricin, and other lectins are its most important products. [NIH] Rickets: A condition caused by deficiency of vitamin D, especially in infancy and childhood, with disturbance of normal ossification. The disease is marked by bending and distortion of the bones under muscular action, by the formation of nodular enlargements on the ends and sides of the bones, by delayed closure of the fontanelles, pain in the muscles, and sweating of the head. Vitamin D and sunlight together with an adequate diet are curative, provided that the parathyroid glands are functioning properly. [EU] Rubella: An acute, usually benign, infectious disease caused by a togavirus

Glossary 267

and most often affecting children and nonimmune young adults, in which the virus enters the respiratory tract via droplet nuclei and spreads to the lymphatic system. It is characterized by a slight cold, sore throat, and fever, followed by enlargement of the postauricular, suboccipital, and cervical lymph nodes, and the appearances of a fine pink rash that begins on the head and spreads to become generalized. Called also German measles, roetln, röteln, and three-day measles, and rubeola in French and Spanish. [EU] Saliva: The clear, viscous fluid secreted by the salivary glands and mucous glands of the mouth. It contains mucins, water, organic salts, and ptylin. [NIH] Sclerosis: A induration, or hardening; especially hardening of a part from inflammation and in diseases of the interstitial substance. The term is used chiefly for such a hardening of the nervous system due to hyperplasia of the connective tissue or to designate hardening of the blood vessels. [EU] Selenium: An element with the atomic symbol Se, atomic number 34, and atomic weight 78.96. It is an essential micronutrient for mammals and other animals but is toxic in large amounts. Selenium protects intracellular structures against oxidative damage. It is an essential component of glutathione peroxidase. [NIH] Serology: The study of serum, especially of antigen-antibody reactions in vitro. [NIH] Serum: The clear portion of any body fluid; the clear fluid moistening serous membranes. 2. blood serum; the clear liquid that separates from blood on clotting. 3. immune serum; blood serum from an immunized animal used for passive immunization; an antiserum; antitoxin, or antivenin. [EU] Sinusitis: Inflammation of a sinus. The condition may be purulent or nonpurulent, acute or chronic. Depending on the site of involvement it is known as ethmoid, frontal, maxillary, or sphenoid sinusitis. [EU] Spectrum: A charted band of wavelengths of electromagnetic vibrations obtained by refraction and diffraction. By extension, a measurable range of activity, such as the range of bacteria affected by an antibiotic (antibacterial s.) or the complete range of manifestations of a disease. [EU] Spondylitis: Inflammation of the vertebrae. [EU] Stomatitis: Inflammation of the oral mucosa, due to local or systemic factors which may involve the buccal and labial mucosa, palate, tongue, floor of the mouth, and the gingivae. [EU] Streptavidin: A 60kD extracellular protein of Streptomyces avidinii with four high-affinity biotin binding sites. Unlike avidin, streptavidin has a near neutral isoelectric point and is free of carbohydrate side chains. [NIH] Sunburn: An injury to the skin causing erythema, tenderness, and sometimes blistering and resulting from excessive exposure to the sun. The

268 Lyme Disease

reaction is produced by the ultraviolet radiation in sunlight. [NIH] Synovial: Of pertaining to, or secreting synovia. [EU] Synovitis: Inflammation of a synovial membrane. It is usually painful, particularly on motion, and is characterized by a fluctuating swelling due to effusion within a synovial sac. Synovitis is qualified as fibrinous, gonorrhoeal, hyperplastic, lipomatous, metritic, puerperal, rheumatic, scarlatinal, syphilitic, tuberculous, urethral, etc. [EU] Systemic: Pertaining to or affecting the body as a whole. [EU] Tetracycline: An antibiotic originally produced by Streptomyces viridifaciens, but used mostly in synthetic form. It is an inhibitor of aminoacyl-tRNA binding during protein synthesis. [NIH] Thermoregulation: Heat regulation. [EU] Thrombosis: The formation, development, or presence of a thrombus. [EU] Thyroxine: An amino acid of the thyroid gland which exerts a stimulating effect on thyroid metabolism. [NIH] Titre: The quantity of a substance required to produce a reaction with a given volume of another substance, or the amount of one substance required to correspond with a given amount of another substance. [EU] Tonsillitis: Inflammation of the tonsils, especially the palatine tonsils. [EU] Topical: Pertaining to a particular surface area, as a topical anti-infective applied to a certain area of the skin and affecting only the area to which it is applied. [EU] Toxicology: The science concerned with the detection, chemical composition, and pharmacologic action of toxic substances or poisons and the treatment and prevention of toxic manifestations. [NIH] Toxin: A poison; frequently used to refer specifically to a protein produced by some higher plants, certain animals, and pathogenic bacteria, which is highly toxic for other living organisms. Such substances are differentiated from the simple chemical poisons and the vegetable alkaloids by their high molecular weight and antigenicity. [EU] Transplantation: The grafting of tissues taken from the patient's own body or from another. [EU] Treponema: A genus of microorganisms of the order spirochaetales, many of which are pathogenic and parasitic for man. [NIH] Tuberculosis: Any of the infectious diseases of man and other animals caused by species of mycobacterium. [NIH] Tularemia: A plague-like disease of rodents, transmissible to man. It is caused by francisella tularensis and is characterized by fever, chills, headache, backache, and weakness. [NIH]

Glossary 269

Vaccination: The introduction of vaccine into the body for the purpose of inducing immunity. Coined originally to apply to the injection of smallpox vaccine, the term has come to mean any immunizing procedure in which vaccine is injected. [EU] Vaccine: A suspension of attenuated or killed microorganisms (bacteria, viruses, or rickettsiae), administered for the prevention, amelioration or treatment of infectious diseases. [EU] Vertigo: An illusion of movement; a sensation as if the external world were revolving around the patient (objective vertigo) or as if he himself were revolving in space (subjective vertigo). The term is sometimes erroneously used to mean any form of dizziness. [EU] Vesicular: 1. composed of or relating to small, saclike bodies. 2. pertaining to or made up of vesicles on the skin. [EU] Vestibular: Pertaining to or toward a vestibule. In dental anatomy, used to refer to the tooth surface directed toward the vestibule of the mouth. [EU] Veterinarians: Individuals with a degree in veterinary medicine that provides them with training and qualifications to treat diseases and injuries of animals. [NIH] Vibrio: A genus of vibrionaceae, made up of short, slightly curved, motile, gram-negative rods. Various species produce cholera and other gastrointestinal disorders as well as abortion in sheep and cattle. [NIH] Viral: Pertaining to, caused by, or of the nature of virus. [EU] Virulence: The degree of pathogenicity within a group or species of microorganisms or viruses as indicated by case fatality rates and/or the ability of the organism to invade the tissues of the host. [NIH]

General Dictionaries and Glossaries While the above glossary is essentially complete, the dictionaries listed here cover virtually all aspects of medicine, from basic words and phrases to more advanced terms (sorted alphabetically by title; hyperlinks provide rankings, information and reviews at Amazon.com): ·

Dictionary of Medical Acronymns & Abbreviations by Stanley Jablonski (Editor), Paperback, 4th edition (2001), Lippincott Williams & Wilkins Publishers, ISBN: 1560534605, http://www.amazon.com/exec/obidos/ASIN/1560534605/icongroupinterna

·

Dictionary of Medical Terms : For the Nonmedical Person (Dictionary of Medical Terms for the Nonmedical Person, Ed 4) by Mikel A. Rothenberg, M.D, et al, Paperback - 544 pages, 4th edition (2000), Barrons Educational

270 Lyme Disease

Series, ISBN: 0764112015, http://www.amazon.com/exec/obidos/ASIN/0764112015/icongroupinterna ·

A Dictionary of the History of Medicine by A. Sebastian, CD-Rom edition (2001), CRC Press-Parthenon Publishers, ISBN: 185070368X, http://www.amazon.com/exec/obidos/ASIN/185070368X/icongroupinterna

·

Dorland's Illustrated Medical Dictionary (Standard Version) by Dorland, et al, Hardcover - 2088 pages, 29th edition (2000), W B Saunders Co, ISBN: 0721662544, http://www.amazon.com/exec/obidos/ASIN/0721662544/icongroupinterna

·

Dorland's Electronic Medical Dictionary by Dorland, et al, Software, 29th Book & CD-Rom edition (2000), Harcourt Health Sciences, ISBN: 0721694934, http://www.amazon.com/exec/obidos/ASIN/0721694934/icongroupinterna

·

Dorland's Pocket Medical Dictionary (Dorland's Pocket Medical Dictionary, 26th Ed) Hardcover - 912 pages, 26th edition (2001), W B Saunders Co, ISBN: 0721682812, http://www.amazon.com/exec/obidos/ASIN/0721682812/icongroupinterna /103-4193558-7304618

·

Melloni's Illustrated Medical Dictionary (Melloni's Illustrated Medical Dictionary, 4th Ed) by Melloni, Hardcover, 4th edition (2001), CRC PressParthenon Publishers, ISBN: 85070094X, http://www.amazon.com/exec/obidos/ASIN/85070094X/icongroupinterna

·

Stedman's Electronic Medical Dictionary Version 5.0 (CD-ROM for Windows and Macintosh, Individual) by Stedmans, CD-ROM edition (2000), Lippincott Williams & Wilkins Publishers, ISBN: 0781726328, http://www.amazon.com/exec/obidos/ASIN/0781726328/icongroupinterna

·

Stedman's Medical Dictionary by Thomas Lathrop Stedman, Hardcover 2098 pages, 27th edition (2000), Lippincott, Williams & Wilkins, ISBN: 068340007X, http://www.amazon.com/exec/obidos/ASIN/068340007X/icongroupinterna

·

Tabers Cyclopedic Medical Dictionary (Thumb Index) by Donald Venes (Editor), et al, Hardcover - 2439 pages, 19th edition (2001), F A Davis Co, ISBN: 0803606540, http://www.amazon.com/exec/obidos/ASIN/0803606540/icongroupinterna

Index 271

INDEX A Abrasion ..............................................165 Actinomycosis......................................132 Adjuvant...............................................217 Adverse .................................18, 119, 130 Alleles ....................................................75 Amoxicillin..................................16, 70, 72 Anaerobic ..................28, 37, 45, 255, 262 Anemia ........................131, 136, 171, 263 Antibody..... 15, 22, 23, 28, 45, 71, 74, 83, 91, 92, 101, 108, 112, 113, 117, 244, 254, 256, 260, 267 Antidepressant.....................................130 Antigen .23, 28, 45, 74, 82, 83, 85, 91, 92, 97, 101, 103, 104, 106, 108, 150, 151, 152, 254, 258, 260, 267 Antimicrobial ............................29, 71, 257 Antiseptic .........................................18, 19 Anxiety.................................................130 Arteries ..................................................97 Arteritis ................................................132 Arthralgia ...............................................74 Aseptic ...................................................71 Assay......23, 67, 69, 74, 80, 92, 100, 101, 111, 128, 216, 260 Asymptomatic ..................................67, 71 Autoantigens........................................155 Autoimmunity...................................74, 82 B Babesiosis ...................117, 164, 165, 202 Bacteria .....13, 22, 24, 28, 30, 45, 51, 61, 67, 94, 109, 110, 134, 135, 146, 159, 210, 253, 254, 255, 262, 267, 268, 269 Biochemical ...................................90, 253 Biopsy................................52, 81, 97, 249 Blastomycosis......................................120 C Calcinosis ............................................132 Candidiasis ..........................................120 Capsules..............................................213 Carbohydrate.......174, 212, 221, 259, 267 Cardiac ...16, 30, 69, 70, 74, 99, 109, 111, 135, 258, 263 Cardiovascular.............................112, 131 Ceftriaxone ......................................16, 52 Cefuroxime ............................................16 Cerebrospinal ........51, 78, 79, 81, 97, 199 Chemotherapy .....................................199 Chlamydia............................................118 Cholesterol ....................92, 210, 212, 261 Coagulation ...........................................37

Collagen................................ 91, 256, 259 Concomitant........................................ 142 Confusion...................................... 14, 152 Conjunctivitis................................. 14, 215 Cutaneous....... 30, 69, 93, 112, 134, 255, 261, 264 Cystitis ................................................ 119 Cytomegalovirus ................................. 118 Cytotoxic ............................................... 98 D Degenerative ... 29, 45, 94, 119, 211, 263, 266 Dermatitis............................ 165, 174, 257 Diarrhea .............................................. 210 Dizziness....................... 13, 131, 137, 269 Doxycycline....................... 16, 70, 72, 150 Dysphoria.............................................. 79 Dysplasia .................................... 132, 171 Dystrophy............................ 119, 129, 170 E Ehrlichiosis.......................... 117, 164, 165 Encephalopathy ........................ 69, 74, 77 Endemic .......... 12, 66, 70, 71, 83, 97, 151 Endocarditis ........................ 120, 134, 255 Endocrinology ....................................... 37 Endometriosis ..................... 116, 135, 258 Enzyme ...... 67, 69, 74, 91, 92, 100, 101, 216, 258, 261 Epidemic ....................................... 71, 111 Epitopes ........................................ 76, 108 Erythema.... 12, 13, 14, 15, 16, 66, 67, 69, 70, 71, 72, 73, 79, 81, 99, 109, 110, 112, 120, 174, 257, 267 Erythromycin ......................................... 16 Extremity ............................................. 129 F Facial ................ 12, 71, 73, 132, 157, 199 Fatigue . 12, 13, 17, 55, 79, 116, 118, 119, 134, 164, 201, 254 Flagellin................... 91, 97, 108, 216, 259 G Gastrointestinal . 22, 23, 29, 137, 259, 269 Genotype .......................... 76, 80, 93, 264 Glucose....................................... 174, 259 Gout .............................................. 34, 132 Granulocytes......................................... 97 Grasses......................................... 66, 260 H Hepatitis ................................................ 13 Herpes ................ 118, 131, 132, 135, 260 Humoral .............................................. 107

272 Lyme Disease

Hybridization................................100, 109 Hybridomas ...................................76, 103 Hyperostosis................................119, 129 I Idiopathic .............................119, 129, 199 Immunization .....................76, 94, 96, 267 Immunoassay ........................................70 Incision ..........................................92, 132 Inflammation .....13, 15, 29, 30, 34, 69, 72, 82, 91, 136, 143, 246, 258, 259, 261, 265, 267 Influenza ..............................................140 Inhalation .............................................265 Interstitial ...............................30, 119, 267 K Keratitis................................................215 L Laryngitis .............................................130 Leprosy................................................120 Lesion .29, 30, 34, 70, 71, 72, 82, 99, 109, 112, 134, 255, 258, 264 Lethal .....................................................91 Leukapheresis .................................52, 53 Lipoprotein...............................67, 92, 261 Lumbar ..................................................52 Lupus ...................................116, 119, 130 M Malabsorption ......................................170 Malaise ................................................257 Masticatory ....................................73, 132 Membrane ......45, 94, 101, 135, 174, 217, 253, 258, 262, 263, 268 Meningitis ............12, 30, 66, 71, 131, 262 Microbiological.....................................100 Microbiology ..................................61, 262 Mononucleosis.................30, 66, 120, 262 Mutagenic ............................................215 Mycoplasma ..........................................37 Mycotic ................................................132 N Nasal .....................................30, 143, 261 Neuropsychology...........................93, 262 Niacin...................................................211 O Orbital ..................................................132 Orofacial ........................................73, 132 Orthopedics .................................118, 129 Osteoarthritis .................34, 119, 129, 132 Osteogenesis.......................................132 Osteomalacia.......................................132 Osteomyelitis ...............................119, 129 Osteopetrosis ......................................132 Osteoporosis .......................119, 129, 132 Overdose .............................................211 P Pacemaker ..............................16, 30, 263

Palpation ............................. 129, 136, 264 Papillomavirus .................................... 118 Papule................................................... 66 Paralysis .. 12, 14, 30, 117, 157, 164, 165, 245, 264 Parvovirus ........................................... 118 Pathogen....... 96, 101, 103, 105, 106, 152 Pathologic ............................... 61, 73, 265 Perinatal.............................................. 118 Phenotype............................... 82, 93, 264 Photosensitivity..................................... 68 Plague............. 38, 45, 137, 140, 265, 268 Poisoning ............................................ 165 Polyarthritis ......................................... 132 Polypeptide ................................. 114, 260 Potassium ........................................... 212 Premenstrual ...................................... 116 Prenatal................................................. 18 Prevalence ................................ 11, 68, 75 Progesterone ...................................... 216 Progressive ................. 101, 103, 105, 106 Proteins.... 19, 28, 29, 70, 74, 91, 96, 102, 107, 114, 150, 200, 210, 212, 254, 256, 258, 260 Psychiatric..................................... 71, 130 Psychosomatic...................................... 79 R Radon ................................. 120, 136, 266 Reagent .............................................. 101 Recombinant...... 103, 104, 106, 107, 108, 111 Reflex.......................................... 119, 129 Reinfection ............................................ 72 Respiratory ....... 130, 134, 136, 143, 157, 255, 261, 267 Rheumatoid ...... 11, 34, 66, 82, 119, 129, 130, 132, 164 Rheumatology..................................... 128 Riboflavin ............................................ 210 Ricinus .................................. 99, 109, 201 Rickets ................................................ 132 Rubella........................................ 118, 121 S Saliva .................................................... 96 Sclerosis ......... 51, 66, 116, 119, 170, 171 Selenium ............................................. 212 Serum . 28, 45, 83, 94, 101, 200, 253, 267 Sinusitis............................... 130, 136, 267 Spectrum.. 27, 28, 79, 140, 191, 253, 256, 264 Spondylitis..................................... 34, 132 Streptavidin ......................... 215, 221, 267 Sunburn .............................................. 165 Sympathetic ........................ 119, 129, 137 Synovial ... 45, 72, 76, 80, 82, 94, 97, 263, 268

Index 273

Synovitis ................................................82 Systemic ...45, 69, 82, 101, 109, 112, 120, 129, 130, 131, 132, 134, 255, 267 T Tetracycline ...........................29, 102, 257 Thermoregulation ................................210 Thrombosis..................................119, 129 Thyroxine.............................................212 Titre .....................................103, 105, 106 Tonsillitis ..............................................130 Topical ...................29, 120, 137, 257, 268 Toxicology .....................................37, 163 Tuberculosis ..........30, 131, 132, 140, 261 Tularemia.............................117, 164, 165

V Vaccination ....................... 67, 73, 88, 201 Vaccine .... 11, 18, 19, 25, 26, 66, 67, 72, 73, 94, 96, 103, 104, 106, 117, 148, 149, 150, 151, 152, 217, 220, 253, 269 Varicella ...................................... 118, 121 Veins ..................................................... 53 Vertigo................................. 131, 137, 269 Vestibular ............................................ 131 Veterinarians................................... 36, 37 Viral................. 12, 66, 118, 131, 143, 261 W Walkers ............................................... 129 Wasps ................................................... 20

274 Lyme Disease