“A lucid and important book, filled with moving case histories and vignettes, about an infectious illness that is threatening many lives.” —Siddhartha Mukherjee, author of The Emperor of All Maladies: A Biography of Cancer
CONQUERING
LYME DISEASE Science Bridges the Great divide
Brian A. Fallon, MD and Jennifer Sotsky, MD
Preface
Picture the following: • A ten-year-old schoolgirl complains of headaches and fogginess and keeps falling asleep in class. She has trouble recalling assignments. She arrives late to school because she routinely needs twelve to fourteen hours of sleep per night. Her teachers wonder what is going on at home. • A twenty-two-year-old man notices palpitations and increasing shortness of breath. A few days later, he becomes weak, collapses, and is rushed to the emergency room, where a pacemaker is inserted to override his complete heart block. • A thirty-year-old man, recently treated for the Lyme disease rash, develops persistent joint and muscle pains, headaches, marked irritability, and severe fatigue. He says, “I feel like a ninety-year-old.” Doctors are not sure how to help him. • A thirty-five-year-old woman gets a bull’s eye rash following a tick bite, is treated within days with antibiotics, never feels sick, and wonders why her friends are so phobic of Lyme disease and of walking in the woods. • A forty-five-year-old musician avoids going to concerts because the stage lights are far too bright and the sounds too painful; her brain seems to get scrambled even with normal-level sensory stimulation. Nine months earlier she developed joint pains and sharp radiating pains from her spine into her limbs. Dense fatigue now dominates her waking hours. She saw six doctors before Lyme disease was considered and diagnosed. She tested positive and now asks why did it take so long?
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• A sixty-five-year-old professor, treated for Lyme arthritis three years earlier, reports that he is having trouble retrieving words as he speaks even though he has given fluent lectures for years; at times, he even uses the wrong words. He also reports recent numbness and tingling in his extremities. He wonders, am I getting dementia?
Each of these is a case of Lyme disease, representing just a small sample of the diverse presentations of this illness. For those who do not have Lyme disease, it can be a fascinating illness. Fascinating because the illness is diverse in its presentation. Fascinating because the microbe causing it has evolved highly adaptive and brilliant ways of evading detection and destruction by the immune response. Fascinating because the societal and political response to Lyme disease has been so varied—at times helpful and productive, while at other times dismissive and divisive. For those who do have Lyme disease, however, “fascinating” does not describe this illness. For many of those whose infection is caught early, Lyme disease is a mild to moderate illness that resolves with antibiotic treatment. For others, it is a painful, disturbing, and prolonged illness— disabling, frightening, confusing, isolating, and sometimes life-altering. Lyme disease can be a profoundly debilitating illness that has a major impact on an individual’s life, with symptoms lasting from months to years. How can one disease have so many presentations? Why do some patients relapse and then suffer with chronic symptoms? Why are the societal and medical responses to Lyme disease so filled with tension? How do the patients and physicians understand this illness? Is there any hope for the sicker patients? Why is there such a great chasm separating different medical communities? This book addresses these questions. It provides an overview of Lyme disease and the most recent scientific advances. It describes the symptoms, diagnosis, treatments, and research. It presents a historical and scientific perspective on the controversies surrounding this illness. Most importantly, this book provides an update on how the extraordinary scientific advances of the past decade are helping to reshape our understanding of Lyme disease and accelerating the identification of new tools to diagnose and treat it.
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We are writing for those affected by the illness and their families. We are also writing for the educated, interested nonmedical person and for the experienced medical professional because each can gain useful knowledge about Lyme disease and other tick-borne diseases from this book. The authors of this book are clinical researchers and front-line clinicians. Because we work closely with basic scientists and with the patient community, we provide a broad scope and unique perspective, bridging worlds that at times seem to be at war with one another. We hope that this book will inform readers and therefore enable them to better navigate the medical system to enhance the likelihood of improved outcomes. We realize that some sections of this book are quite technical and more easily understood by a medically trained professional, while most other sections are more widely accessible to all readers. Writing a book for two audiences—the general public and the medical professional— may seem like a strange choice. We wrote in this fashion for two reasons. First, because of the vast amount of information on the Internet about Lyme disease and the many books about this illness already published by the popular press, a reader can easily be confused, terrified, or misled. Curious nonmedically trained people are trying to understand for themselves what is really going on in this field. Medical information previously only available to doctors from the shelves of a medical library is now obtained through a brief Internet search from home. By providing greater depth into some of the complexities of this illness, we aim to help nonmedically trained readers to gain a better understanding of the symptoms, diagnostic tests, treatment options, prevention strategies, reasons for persistent symptoms, and controversies. Second, we want to present the latest scientific research in sufficient detail to convince the open-minded reader or even the medical skeptic that transformative advances are now underway that will improve the health of our world for the better—and will allow us once again to walk in the woods without worry. In this book, we present what is known, identify what is not known, and elucidate where the latest breakthroughs in science are leading us. We hope to clarify areas of confusion. Above all, this book aims to help patients and the health care providers who care for them as they seek to understand the complexities of this illness.
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Patients may find certain sections of this book particularly accessible. Chapter 13, “Frequently Asked Questions,” includes questions asked of us over the years by patients with specific queries of pressing clinical relevance. Chapter 12, “The Experience of the Patient with Chronic Symptoms,” should resonate with patients and help clinicians get a better sense of what it might be like to have Lyme disease when the course is more complex. Chapter 11, “Suggestions to the Patient Seeking Evaluation or Treatment,” offers pointers on optimizing the medical encounter. Chaper 10, “Lyme Disease Prevention and Transmission,” provides numerous practical suggestions on how to reduce the risk of contracting Lyme disease. Finally, to illustrate certain key points, we have inserted selected clinical case vignettes in different chapters of this book—of individuals with either “typical” or “atypical” Lyme disease or other common tick-borne diseases. The “typical” cases illustrate the usual course of illness, which in most individuals is one of rapid improvement after antibiotic treatment. The “atypical” cases, while far less common, are presented because they cause us to ponder and force us to stretch the limits of our understanding and even to challenge preexisting paradigms. Because these are unusual cases, we have drawn them from the published medical literature so that the reader can go to the original article to learn more. This is an encouraging time in the history of Lyme disease—one characterized by extraordinary research and creative ideas. This novel research comes from research scientists in the United States and around the world. Many of the more recent studies are the products of collaborative efforts by scientists from many different institutions, reflecting both the diversity of skills needed to study a complex disease and the need for patient samples from diverse geographic areas to capture the variant strains of the Lyme disease spirochete and other tick-borne coinfections. Most people—patients and physicians alike—are not aware of these advances. We present them in this book to instill hope and facilitate understanding. Health care providers may not be aware of the diverse manifestations of Lyme disease, the limitations of existing diagnostic tests, the sophisticated survival strategies for immune evasion of the organism that causes Lyme disease (the bacterium Borrelia burgdorferi), and the complex challenges
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posed by patients with persistent symptoms. This is not a simple disease that can be easily dismissed. To help readers who wish to probe more deeply into specific areas, we provide references to journal articles throughout this book. Vast progress has been made on the scientific front that will—in the not-too-distant future—have a hugely beneficial impact on public health. The expanding plague of Lyme disease and other tick-borne diseases is being confronted. This book purposely includes information that is “hot off the press”—describing scientific advances in diagnostics, treatment, and prevention—about advances made possible by the biotechnology revolution and by the generous support provided to researchers by private donors, private foundations, and governmental agencies such as the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC). Our goals in writing this book are to bring clarity to a murky field and to bring hope to both patients and their health care providers by demonstrating that breakthroughs are on the way. Who Are the Authors? Dr. Brian Fallon is director of the Lyme and Tick-Borne Diseases Research Center at Columbia University Medical Center, a leading academic research center dedicated to multidisciplinary research on Lyme disease, focused primarily upon the chronic neurologic and neuropsychiatric aspects. He is a graduate of Harvard College, the Columbia University College of Physicians and Surgeons, and the Columbia University School of Public Health. Dr. Fallon is widely known for his expertise on post-treatment Lyme disease symptoms, particularly in regard to clarifying the impact of Lyme disease on the brain, the neuroimaging and cognitive changes that occur, and the neuropsychiatric and neurobehavioral problems that result. He has lectured internationally, conducted one of the four major NIH-funded placebo-controlled clinical treatment trials on post-treatment Lyme disease syndrome in the United States, and is the author of more than 120 articles and chapters. He has been invited to lecture on his research findings before members of the U.S. Congress, the Institutes of Medicine, and the Centers for Disease Control and Prevention, and he has presented overseas as well
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in Great Britain, Norway, Canada, and Germany. In addition to peerreviewed scientific publications, Dr. Fallon’s work on Lyme disease and other diseases has been featured in the media, including The New Yorker, Time Magazine, New Scientist, and National Public Radio. As a professor of clinical psychiatry at Columbia University Medical Center and director of the Center for Neuroinflammatory Disorders and Biobehavioral Medicine at the New York State Psychiatric Institute, Dr. Fallon is particularly interested in the interplay between infection, the immune system, and the brain—each interacting with the other to lead to the diversity of clinical manifestations that plague our patients. Dr. Jennifer Sotsky is a physician in the residency training program in the Department of Psychiatry at Columbia University Medical Center. She received her BA in English from Dartmouth College, MS in Narrative Medicine from Columbia University, and MD from Columbia University’s College of Physicians and Surgeons. Dr. Sotsky completed advanced training in Lyme and tick-borne diseases at the Lyme Disease Research Center at Columbia Medical Center as a medical student and continued her work there throughout her medical training. Carl Brenner completed his college studies at Yale University and is a senior staff associate of research at the Lamont-Doherty Earth Observatory, a former member of the Research Advisory Board of the National Research Fund for Tick-Borne Diseases, and current director of the U.S. Science Support Program (USSSP) associated with the International Ocean Discovery Program. He has served on the Lyme Disease Advisory Panel to the National Institute of Allergy and Infectious Diseases and has presented testimony on Lyme disease to the U.S. Senate Committee on Labor and Human Resources and the New York State Assembly Standing Committee on Health. Dr. Carolyn B. Britton is an associate professor of neurology at the Columbia University Medical Center. She received her medical degree from NYU School of Medicine, an MS in Virology at NYU, and residency and fellowship training in infectious disease and neurology at Columbia University Medical Center. Dr. Britton was one of the early pioneers delineating the neurologic manifestations of HIV infection, starting in 1981. Her interest expanded to Lyme disease in the late 1990s when in both research and clinical settings she evaluated and treated hundreds
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of patients with neurologic and neuropsychiatric manifestations of Lyme disease. Dr. Britton’s work has included national leadership, both in state and national policy on battling the HIV epidemic and in her role as past president of the National Medical Association. Dr. Marina Makous is a family medicine physician in private practice in Pennsylvania. A graduate of the Medical College of Pennsylvania and Drexel University College of Medicine (Philadelphia), she completed a two-year fellowship program in Lyme and tick-borne diseases at the Columbia University Medical Center and was subsequently appointed assistant clinical professor of family medicine in psychiatry at the Columbia University Medical Center. She has presented at regional and national conferences on Lyme disease. Dr. Makous’s extensive background as a family medicine physician and her experience in diagnosing and treating people with tick-borne diseases help provide the primary care doctor’s perspective for this book. Dr. Jenifer Nields is an assistant clinical professor of psychiatry at Yale University School of Medicine and a graduate of Harvard College, the College of Physicians and Surgeons at Columbia University Medical Center, and the New Directions Program in Psychoanalytic Writing at the Washington Center for Psychoanalysis. Dr. Nields’s early research on the neuropsychiatric aspects of Lyme disease highlighted its cognitive, sensory, and mood-altering features; this research was greeted with much enthusiasm by patients, as the clinical profile resonated so strongly with their clinical experience. Her published peer-reviewed journal articles, book chapters, and letters have led her to be recognized as one of the national experts on the neuropsychiatric aspects of Lyme disease. Dr. Nields currently supervises psychiatry residents at Yale University School of Medicine and treats patients in private practice in Connecticut. Dr. Barbara Strobino previously served as Associate Director of Research at the Lyme and Tick-Borne Diseases Research Center at Columbia University Medical Center. She received an MPH from University of Pittsburgh and a PhD in epidemiology from Columbia University and has published numerous journal articles and book chapters on pregnancy risk factors and pediatrics. As principal or coinvestigator of several epidemiologic studies funded by NIH, the New York State Tick-Borne Disease Institute, and the March of Dimes, she investigated the relationship
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between miscarriages, stillbirth, preterm delivery, and congenital malformations and maternal Lyme disease. What Is Our Particular Perspective and Primary Clinical Focus? Since the early 1990s, we have focused our clinical and research skills on Lyme disease, particularly on the chronic aspects. Puzzled by the conflicts between patients and academic researchers, we have sought to apply careful clinical observation and the tools of research to test hypotheses regarding diagnosis and treatment. Many of these hypotheses emerged from the clinicians in the community who were struggling to find ways to help patients. These doctors witnessed what was happening to their patients in the long term and were trying empirical treatments to address the chronic symptoms. We wanted to test some of the clinical observations emerging from these clinicians to see if they held up under the scrutiny of the scientific method. Because of our unique position as clinical researchers associated with the Lyme and Tick-Borne Diseases Research Center at Columbia University Medical Center, we have had the privilege of designing studies and collaborating with outstanding research scientists at Columbia University and elsewhere to address some of the most pressing questions that plague our patients. As physicians and scientists, we recognize that a growing number of patients have experienced ongoing or relapsing symptoms after having been treated for Lyme disease. We recognize that current diagnostic tests, while helpful, have limitations; foremost among these concerns is that the antibody-based tests that are the core of current Lyme disease testing do not provide definitive information regarding the presence or absence of B. burgdorferi infection. We also recognize that there are multiple complex mechanisms following B. burgdorferi infection that may cause patients to have persistent symptoms. While we hope that most people who read this book will come away better informed and encouraged by the latest research, we also anticipate some individuals may feel that sections of this book are either too open to the patients’ or community doctors’ perspective or too focused on the
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academic researchers’ perspective. Criticisms such as these are welcome because they suggest that we have struck a balance in this book. The history of Lyme disease has been characterized by polarized positions on diagnosis and treatment, leading some patients, community doctors, and academic researchers to feel threatened by one another. To address these conflicts, we include a chapter on the “Lyme Wars” because this is part of the troubled history of Lyme disease. We strongly believe and hope, however, that the “Lyme Wars” are fading as novel results from recent science are serving to open up new lines of communication between the previously warring camps. Conflict and uncertainty in science can be terribly discouraging for patients who need and want answers now, but conflict can also be enormously helpful in advancing science and focusing funding and talent on the most pressing questions. Because of the accelerated pace of scientific discovery over the past ten years and because patients and scientists have struck a new chord of collaboration, the most urgent questions are now being addressed.
IN THIS AUTHORITATIVE BOOK, Brian A. Fallon and Jennifer Sotsky reveal what patients and doctors need to know about Lyme disease and other tick-borne infections—the diverse symptoms, test interpretation, treatment options, and prevention methods. They unravel the controversies and address the hard questions, including how to help those with persistent symptoms. Drawing on extensive clinical experience and cutting-edge research, Conquering Lyme Disease gives an up-to-the-minute overview of how the scientific revolution in medicine is transforming our understanding of Lyme disease.
FALLON AND
SOTSKY
“[Fallon and Sotsky’s] greatest accomplishment, by far, is delivering multiple viewpoints with minimal bias and great sensitivity: the clinician’s, the researcher’s and, particularly, the patient’s.”
LANCET INFECTIOUS DISEASE “An enlightening, informative, and up-to-date account of the key issues . . . [that offers] new hope in our fight against this debilitating disease. . . . A must-read.” YING ZHANG, Johns Hopkins University “A sturdy reference on an illness whose varied presentations can bedevil patients and caregivers alike.”
PUBLISHERS WEEKLY
BRIAN A. FALLON, MD, is director of the Lyme and Tick-Borne Diseases Research Center at the Columbia University Irving Medical Center.
JENNIFER SOTSKY, MD, is a physician with a specialty in narrative medicine. She is a resident at Columbia University Irving Medical Center.
SCIENCE BRIDGES THE GREAT DIVIDE
“Patients and clinicians will find nothing better that can be read by both to gain insight into their comprehensive management. . . . A valuable book.”
CONQUERING LYME DISEASE
NATURE
Cover design: Milenda Nan Ok Lee Cover images: © Shutterstock
printed in the u.s.a.
COLUMBIA UNIVERSITY PRESS | NEW YORK | CUP.COLUMBIA.EDU
COLUMBIA
“A lucid and important book, filled with moving case histories and vignettes, about an infectious illness that is threatening many lives.” —SIDDHARTHA MUKHERJEE, author of The Emperor of All Maladies: A Biography of Cancer
CONQUERING
LYME DISEASE SCIENCE BRIDGES THE GREAT DIVIDE
BRIAN A. FALLON, MD AND JENNIFER SOTSKY, MD