Beating Lyme: Understanding and Treating This Complex and Often Misdiagnosed Disease

Its symptoms mimic those of multiple sclerosis. It is caused by a tick bite. It is generally misdiagnosed or undiagnosed, and over a million and a half people in the US have it and do not know it or cannot find the treatment they need. Bean, who was diagnosed a full six months after she fell ill (in fact, a relatively short time compared to the horror stories of other patients) describes how Lyme disease has become so common, how it was discovered and the diseases with which it is most often confused, the medical politics behind it, finding insurance and a life (let alone a lifestyle), treatments, failures and successes in medical research, and prevention techniques. Bean includes a list of symptoms and another of resources, including advocacy groups, research units and sources of support and information. Annotation ©2008 Book News, Inc., Portland, OR (booknews.com)

More than 30 years after it was first diagnosed, Lyme disease remains one of our most misunderstood illnesses. This frequently misdiagnosed infection is spreading at an alarming rate and, if not treated early, can cause debilitating symp­toms. More than 1.7 million people in the United States, and many others in Europe and Asia, currently have Lyme and are unaware or can’t find the right treatment. Finally, Beating Lyme offers those who struggle with it the guidance to get the help they need. A respected health author and educator, Constance Bean is an authority on this elusive illness. In 1993 she was diagnosed with Lyme and has spent the past 14 years researching its treatments and diagnoses. In Beating Lyme readers will find comforting, hard-won advice on such topics as:

• what Lyme is and how to recognize the symptoms

• what to do after a tick bite

• how to protect family and friends

• how to get the best treatment and what to do if insurance won't cover it

• living with long-term Lyme disease

Compassionate and thoroughly researched, this is a book that will help both doctors and patients understand and conquer this complex illness.

Constance A. Bean (Boston, MA) is the former coordinator of health education at MIT and is the author of six other books on health issues, including the classic Methods of Childbirth. Lesley Ann Fein, M.D., M.P.H. (Caldwell, NJ) is active in the Lyme disease community. She has served on a New Jersey Legislative Task Force and is Medical Director for the Pennsylvania Lyme Disease Society and the Greater Hartford (Connecticut) Lyme Disease Support and Action Group.

CONTENTS

Preface xii

Acknowledgments xvii

CHAPTER ONE: The Hidden Epidemic 1

CHAPTER TWO: “Have We Aways Had Lyme?” Discovering Infectious Disease, Environmental Change, and the Surge of Lyme Disease 27

CHAPTER THREE: Discovering Lyme Disease 53

CHAPTER FOUR: “Is It Chronic Fatigue Syndrome?” “Is It Fibromyalgia?” Diagnosis of Lyme and Other Tick-Borne Diseases 67

CHAPTER FIVE: “There Must Be Tests” 97

CHAPTER SIX: “If It Isn’t Lyme, What Is It?” The Consequences of Not Diagnosing Lyme Disease, Multiple Sclerosis, Alzheimer’s Disease, Lupus, and More 112

CHAPTER SEVEN: “Where Are the Doctors?” The Politics of Lyme 134

CHAPTER EIGHT: “Will I Ever Get Well?” Treating Persistent Lyme Disease--The Jarisch-Herxheimer Reaction 163

CHAPTER NINE: Living with Persistent Lyme Disease--Insurance and Lifestyle Issues 185

CHAPTER TEN: “What About Antibiotic Resistance?” “Aren’t Antibiotics Dangerous?” Antibiotics Used for Treating Lyme Disease 200

CHAPTER ELEVEN: “What Do the Studies Say?” The Experts Speak 212

CHAPTER TWELVE: “Whatever Happened to the Lyme Vaccine?” Lessons Learned About Medical Research 228

CHAPTER THIRTEEN: Preventing Lyme Disease--What to Do After a Tick Bite--It’s More Than Tucking Your Pants into Your Socks 248

Appendix: List of Symptoms 263

Resources 265

Notes 271

Index 277

About the Authors 285