EVERYTHING YOU NEED TO KNOW ABOUT LYME DISEASE AND OTHER TICK-BORNE DISORDERS

Transcription

1 i EVERYTHING YOU NEED TO KNOW ABOUT LYME DISEASE AND OTHER TICK-BORNE DISORDERS SECOND EDITION Karen Vanderhoof-Forschner, B.S., M.B.A., C.P.C.U., C.L.U. Foreword by Willy Burgdorfer, Ph.D., M.D. (hon) John Wiley & Sons, Inc.

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3 i EVERYTHING YOU NEED TO KNOW ABOUT LYME DISEASE AND OTHER TICK-BORNE DISORDERS SECOND EDITION Karen Vanderhoof-Forschner, B.S., M.B.A., C.P.C.U., C.L.U. Foreword by Willy Burgdorfer, Ph.D., M.D. (hon) John Wiley & Sons, Inc.

4 ii This book is printed on acid-free paper. Copyright 2003 by Karen Vanderhoof-Forschner. All rights reserved. Published by John Wiley & Sons, Inc., Hoboken, New Jersey Published simultaneously in Canada No part of this publication may be reproduced, stored in a retrieval system in any form or by any means, electronic, mechanical, photocopying, recording, scanning, or otherwise, except as permitted under Section 107 or 108 of the 1976 United States Copyright Act, without either the prior written permission of the Publisher, or authorization through payment of the appropriate per-copy fee to the Copyright Clearance Center, 222 Rosewood Drive, Danvers, MA 01923, (978) , fax (978) , or on the web at Requests to the Publisher for permission should be addressed to the Permissions Department, John Wiley & Sons, Inc., 111 River Street, Hoboken, NJ 07030, (201) , fax (201) , permcoordinator@wiley.com. Limit of Liability/Disclaimer of Warranty: While the publisher and the author have used their best efforts in preparing this book, they make no representations or warranties with respect to the accuracy or completeness of the contents of this book and specifically disclaim any implied warranties of merchantability or fitness for a particular purpose. No warranty may be created or extended by sales representatives or written sales materials. The advice and strategies contained herein may not be suitable for your situation. You should consult with a professional where appropriate. Neither the publisher nor the author shall be liable for any loss of profit or any other commercial damages, including but not limited to special, incidental, consequential, or other damages. For general information about our other products and services, please contact our Customer Care Department within the United States at (800) , outside the United States at (317) or fax (317) Wiley also publishes its books in a variety of electronic formats. Some content that appears in print may not be available in electronic books. For more information about Wiley products, visit our web site at ISBN Printed in the United States of America

5 iii This book is dedicated to several people who have made a profound difference in my life: Jamie, my son ( ), who was born into a world ignorant about Lyme disease and suffered because of it. Christy, my daughter (1993), who was born into a world enlightened about many tick-borne disorders and is healthy.... and the people who played a pivotal role in making the difference: Dr. Willy Burgdorfer Senator Joe Lieberman my lifetime love, Thomas E. Forschner and my loving parents, Ruth and Irwin Vanderhoof

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7 v CONTENTS Foreword Preface: My Struggle with Lyme Disease Acknowledgments ix xi xv 1 A PUBLIC HEALTH THREAT EMERGES 1 Understanding Lyme Disease 3 The Problem of Underreporting 7 The Science of Lyme Disease 8 Are Tick Bites the Only Source of Lyme Disease? 12 Other Tick-Borne Disorders 15 2 UNDERSTANDING TICKS AND THE INFECTIONS THEY SPREAD 18 Are Ticks on the Rise? 19 The Life Cycle of a Tick 21 How Ticks Feed 22 Will You Become Ill from a Tick Bite? 24 Types of Ticks 27 3 THE HISTORY OF LYME DISEASE 37 Phase One: A Century of Obscurity 39 Phase Two: Breakthrough Discovering the Cause and Consolidation of Syndromes 42 Phase Three: Lyme Disease Becomes a Household Term 45 4 SIGNS AND SYMPTOMS OF LYME DISEASE 47 Localized Disease 49 Disseminated Disease 53 v

8 vi Contents 5 THE QUEST FOR A DIAGNOSIS 65 Getting a Diagnosis 66 Antibody Tests to Detect Bb 68 Types of Antibody Tests 71 Direct Detection Tests 77 6 THE TREATMENT OF LYME DISEASE 80 Choosing Your Health Professionals 80 In the Doctor s Office 83 The Challenge of Antibiotic Treatments 84 Length of Treatment 94 Insurance Coverage 95 Maximizing Your Support System 99 7 OTHER TICK-BORNE DISORDERS 104 The Tick Triad 104 Babesiosis 106 Cat Scratch Disease (Bartonella) 108 Colorado Tick Fever 110 "Deer" Tick Virus Variation of Tick-Borne Encephalitis 112 Ehrlichiosis 113 Master's Disease (Southern Lyme Disease) 118 Powassan Encephalitis 120 Query (Q) Fever 121 Relapsing Fever 123 Rocky Mountain Spotted Fever 125 Tick Paralysis 129 Tularemia HOW TO REMOVE A TICK 133 Key to Safety: Be Proper and Prompt 134 Tick Removal Equipment 134

9 Contents vii Proper Tick Removal 135 Storing or Disposing of Ticks 137 Document and Watch 138 Making Your Own Tick Kit 139 Removing Unattached Ticks PERSONAL PROTECTION FOR YOU AND YOUR FAMILY 141 Educate Your Family 142 Dress Properly 143 Avoid Contact with Tick-Infested Vegetation 145 Inspect Yourself for Ticks 145 Decide Which Tick Repellents and Pesticides to Use 146 Start a School or Business Prevention Program MANAGING YOUR PROPERTY 156 Collecting Ticks at Home and Nearby 156 Vegetation Management 159 Host Management 160 Killing Ticks 161 THE PROMISE OF VACCINES 166 The Challenges 167 The Trials 167 The Future 172 THE RISKS TO YOUR ANIMALS 174 Sources of Animal Infection 175 Diagnosis 176 Treatment 177 Disease Profile in Specific Animals 178 Preventing Tick Bites 184

10 viii Contents APPENDICES I. Time Line: The History of Lyme Disease 187 II. Official CDC Disease Definitions 217 III. Resources of the Lyme Disease Foundation 225 IV. Tick Bytes in Cyberspace 230 V. School Trip Letter 235 VI. Personalized Medical Log 236 Bibliography 237 Index 261

11 ix FOREWORD Since ancient times, ticks have been considered disgusting parasitic animals, associated with a wide variety of terrestrial and flying vertebrates and even with a few marine snakes and lizards. In temperate zones and tropical countries, ticks surpass all other arthropods in the number and variety of disease agents they transmit to humans and their domestic animals. While some species are host-specific and rarely feed on humans, others will attack and feed on any blood source including humans that enter their biotopes. Because of the already small sizes of ticks, paricularly of the larval and nymphal stages, and also because of the painless attachment and feeding, ticks often go unnoticed until they have dropped, leaving an itching and more or less severe inflammation at the site of the bite. Undoubtedly hundreds of Lyme disease patients were or still are unaware of having been bitten by the small freckle with legs, that is, the nymphal deer tick. Well, Karen Forschner was one such patient. After clearing brush with her husband, Tom, she came down with symptoms suggesting Lyme disease. She had never heard of this illness and its association with ticks crawling in her backyard and on her cats and dogs. The illness, unfortunately, remained undiagnosed through Karen s pregnancy and affected her son, Jamie, who became ill the second day of his life. Suffering daily vomiting, eye tremors, and paralysis, Jamie was seen by dozens of physicians who subjected him to brain scans, dyes, probes, muscle biopsies, operations, and hospitals without leading to a proper diagnosis and effective treatment. It was then that Karen, determined to find the answers for Jamie s problems, began consulting the medical literature on Lyme disease. She found sufficient similarities to suggest that her son did inherit her illness an assumption that eventually was confirmed by laboratory tests in The more Karen read about Lyme disease, the more she became frustrated by the medical services and the limited information about a disease that infects large segments of the American people, especially in the northeastern and midwestern states. Thus, in January 1988, with the help of her husband, Tom, and her parents, and supported by a board of directors with experts from the medical, scientific, and public advocacy communities, she started the Lyme Borreliosis Foundation a nonprofit organization devoted to prevention, education, and treatment of Lyme disease. As president of the foundation, Karen has been the driving force in pro- ix

12 x Foreword viding the general public and medical profession with information about the disease. In promoting the foundation s activities, she has appeared on talk shows and symposia including 20/20, Inside Edition, Home Show, CNN, NBC, ABC, and CBS News, and has been mentioned in the Boston Globe, the New York Times, Macleans, Reader s Digest, and Family Circle ( Women Who Make a Difference ). With her book, Everything You Need to Know about Lyme Disease and Other Tick-Borne Disorders, Karen provides a compendium of knowledge she has accumulated during her search for answers to her and Jamie s struggles with Lyme disease. In an easily understandable language, she introduces the reader to the complex clinical aspects of Lyme disease and discusses the often controversial issues of diagnosis and treatment. She also presents a historical analysis of findings that led to the emerging awareness of Lyme disease in Europe and the United States. A special chapter is devoted to brief reviews of other tick-borne diseases in this country, namely Rocky Mountain spotted fever, relapsing fever, tularemia, Colorado tick fever, tick paralysis, and the emerging ehrlichioses. The causative agents of these entities have been shown to occur occasionally in the same tick species that transmit the agent of Lyme disease. Several chapters deal with the biology of tick vectors, tick control, personal protection against tick bites, and the safe removal of attached and feeding ticks. I am very pleased to write the foreword for this outstanding book. Everything You Need to Know about Lyme Disease and Other Tick-Borne Disorders belongs on every family, business, and health care professional s bookshelf. The information is scientifically based, and the scope provides easy-to-understand information for the novice as well as new information for the well informed. Unique to this book are the outstanding appendices. They include a tremendously valuable historical time line of scientific discoveries (with the only available references to the original published works), a detailed bibliography, lists of support groups, resources available around the world, and Internet addresses. Lyme disease continues to be the most prevalent tick-borne illness in this country and will continue to affect thousands of people, young and old, every year. Everything You Need to Know about Lyme Disease and Other Tick-Borne Disorders certainly lives up to its title and should be read by anyone living in tick-infested areas. Willy Burgdorfer, Ph.D., M.D. (hon.)

13 xi PREFACE MY STRUGGLE WITH LYME DISEASE My husband, Tom, and I lost our son when he was two weeks shy of his sixth birthday. Jamie died from a disease the nation s medical and scientific communities thought he could not get. They were wrong. In 1985, I was bitten by a tick while I was pregnant and soon became ill with a multitude of problems, including a rash, serious joint swelling, profound fatigue, migraines, and intense pain. A physician diagnosed me with crippling arthritis, told me it was incurable, and predicted I would eventually live my life in a wheelchair. He, too, was wrong. My family s struggle with Lyme disease is a tragedy, but it is also a story of courage and hope. Out of our personal nightmare emerged the Lyme Disease Foundation and nationwide awareness of the risks of tick-borne illnesses. Jamie was our first child, the blond-haired, blue-eyed light of our life. The day Jamie was born he had his first of many spinal taps, because the doctors saw signs of a brain infection. By the time he was 6 weeks old, he had begun to vomit repeatedly and had alarming eye tremors, indications of an ongoing brain infection. At 6 months, he showed signs of malnourishment because he was unable to absorb his food. Hearing tests showed that he was totally deaf, although we later discovered that was not true. Physicians saw signs of permanent damage in his eyes. Surgery to realign his stomach to stop the life-threatening vomiting was unsuccessful, leaving him with a stomach too small to eat normal meals. Soon after Jamie s birth, when our struggles through one medical crisis after another were just beginning, a mysterious condition called Lyme disease was emerging. Weeks later it was mentioned as a possible cause of the illness that had plagued me during my pregnancy. I was told that if that were so, a couple of antibiotic pills were all that was necessary to cure me. I was also assured that my infection could not have spread to the child I was carrying. But there were already scientific publications showing mother-to-fetus Lyme infection. Jamie would not be tested until signs of a congenital spirochetal infection were seen in the back of his eyes by a neuroophthalmologist. When laboratory tests were positive for Jamie, our five pets, and me, we xi

14 xii Preface suddenly had some hope. Perhaps a simple antibiotic treatment would curb the vicious onslaught of symptoms. Over the year, I learned there was nothing simple about treatment, but after repeated doses of antibiotics, I slowly regained my health. For Jamie, it was not to be. At first, he responded to the short-term antibiotic shots but within weeks he relapsed. Local doctors repeatedly resisted our pleas to re-treat Jamie with longer-term antibiotics, warning that the medication itself was dangerous. Tom and I were persistent, and short-term treatment was followed by re-treatment, temporarily improving my son s condition. For a time, he was able to attend kindergarten and he began learning to talk. His muscle tone and vision improved, and he was able to eat again. We were finally finding the little boy inside the ravaged body. We stopped treatment. Sadly, these gains did not last. In his final weeks of life, Jamie s brain became inflamed. Our son was put on life-support systems, but the swelling could not be controlled. On June 21, 1991, he passed away. One struggle had ended, but another one continued. In the years that we were fighting for Jamie s life, Tom and I had also given birth to an organization, founded so that others would not have to face hardships like ours. We had been astonished at how little was known about the condition that eventually took Jamie from us. Most scientists did not believe it was possible to transmit Lyme infection in utero, but my own medical search demonstrated otherwise. The breadth of symptoms associated with the illness was poorly understood in this country, and no one knew what to do with patients who did not respond to a single course of antibiotics. Our personal plight had gained the attention of the television program 20/20, and countless articles had been written about us in the national and international media. We were the catalyst for making Lyme disease a household term. As our story became known, our telephone began to ring. Hundreds of people around the country were recognizing their own symptoms in the descriptions of Jamie and me, and they wanted to know where to go for help. The response from the scientific community was surprising researchers studying the disease in isolation from one another were desperate for opportunities to meet with colleagues to talk about the strange tick-borne diseases they were beginning to see. It had become obvious that an umbrella organization was badly needed to find the truth about Lyme disease. To meet the needs of patients and researchers, we launched the Lyme Borreliosis Foundation in 1988, the first organization in the world dedicated exclusively to Lyme disease. We had searched for an existing organization to work with. We had no desire to duplicate efforts. When it became clear no such nonprofit group existed, we created the foundation as a place for team-

15 Preface xiii work and a catalyst for change. Three years later, the name was changed to the Lyme Disease Foundation because it was much easier to pronounce. I walked the halls of Congress, telling my family s story, educating representatives about the disease, and explaining why millions of dollars were needed to learn more about it. Senator Joseph Lieberman and Congressman George Hochbrueckner became invaluable partners. Later, Senators Kennedy, Dodd, and Santorum became major leaders, too. Thousands of patients and their physicians contacted their representatives to plead for funding. Together, our efforts were instrumental in securing the first targeted federal funding for Lyme disease education and research. The foundation began to sponsor an annual international scientific conference; made connections with European researchers, where this disease has been studied for more than a century; and for the first time established a network of community educators, support groups, and researchers. This would make one clear, unified voice for us to work together to find real answers. Through our efforts, and those of other partnerships formed among concerned families and scientific professionals, attitudes toward Lyme disease have begun to change. Today, the medical community is finally addressing some neglected issues. They have awakened to the fact that the bacteria that cause Lyme disease can, under rare circumstances, be transmitted from mother to fetus via the placenta. Patients who do not respond to a single course of antibiotics are now offered other treatment options, although we still cannot predict what will work. Patients are being tested for a wide variety of tickborne disorders. And attention is finally being paid to prevention strategies that can keep us all safe. We are a long way from eliminating Lyme disease and other tick-borne infections altogether, but there is no doubting our enormous progress. Armed with the information I have provided in this book, you may now be able to keep your family safe. And I expect the news will keep getting better as science advances and more people become knowledgeable about strategies for personal protection. Please keep in mind that the disease descriptions in this book include a wide variety of symptoms experienced by various patients. Most patients experience only a few of these symptoms. To think, it all began with the birth of a beautiful little boy named Jamie. Jamie's gift to the sister he never met is one of prevention and good health. A gift that is priceless. Karen Vanderhoof-Forschner