Pamela Weintraub - Cure Unknown: Inside the Lyme Epidemic

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For Jason, who came back to us

For David, who woke up

For Mark

Authors Note

Some patients names have been changed at their request.

Acknowledgments

Over the six years of researching and writing this book, Ive been helped by dozens of people, far too many to mention here. The first draft of my book, more than twice the length of the current volume, included every person I interviewed and every thought I ever had about Lyme disease and all its coinfections. It sits, now, in a big black binder on a shelf that sags under its weight. The current manuscript has lost many of those original interviews so my own narrative voice could rise up and my story could ring clearbut whether or not you have remained in this version, you informed my journey and investigative arc and the story I tell now.

Special thanks to my gifted editors, Jennifer Weis and Stefanie Lindskog at St. Martins Press, whose sea of yellow Post-it notes guided me through to a true narrative, and to my agent, Wendy Lipkind, who stuck with me through the maddening saga of Lyme, the book.

Enormous thanks to those who gave my manuscript a technical read, sharing their thoughts and comments: Kenneth Liegner, M.D., of Armonk, New York; Eugene Davidson, professor of biochemistry and molecular biology at Georgetown University Medical Center and department chair from 1988 to 2003; and Carl Brenner, Columbia University geologist, research board member of the National Research Fund for Tick-Borne Diseases, and science historian of all things Lyme. Carl, thank you for talking to me for six years now, for teaching me so much, and for taking me on the world tour of Lyme disease peer-reviewed literature with all your wisdom, humor, and depth.

Thank you, Dr. Sheila Statlender and the whole Statlender family and Dr. David Martz for sharing your lives in this volume.

To the science journalist, Jill Neimark, I can never repay you for coming to my rescue during my darkest hour, when I considered chucking this project; you read every word of my manuscript and sent copious notes so that I could continueI used them all.

Deep gratitude to my friend, Barbara Goldklang, for opening her amazing historical archives and more impressive heart, and helping me navigate Lymes rapids when I was so new and even later, when I was old.

Many academic scientists helped me to think clearly about Lyme research and the very nature of science, most notably, Benjamin Luft, chairman, Department of Medicine, and chief, Division of Infectious Diseases State University of New York at Stony Brook, and Stephen Barthold, director of the Center for Comparative Medicine at the schools of Medicine and Veterinary Medicine at the University of California at Davis.

Other people who provided important help are Pat Smith, president of the Lyme Disease Association; Dr. Russell Donnelly; Dr. Daniel Cameron, president of the International Lyme and Associated Diseases Society (ILADS); Dr. Joseph Burrascano; Dr. Edwin J. Masters; Ken Fordyce; Kerry Fordyce; Phyllis Mervine; Suzanne Smith; Elizabeth Catalano; Heather Florence; and the late Betty Gross, who spent countless hours with me even as she was dying of cancer.

Thanks to Mona Marcus and Sue Sugar of Chappaqua, New York, two soldiers of the suburbs; to Joel Shmukler, Esq., for helping to hone my powers of skepticism; and to Rita Stanley, Ph.D., for her wry, spot-on observations year in and out.

To my husband, Mark, thank you for your eagle-eyed attention to my manuscript, for supporting me in this effort despite all the hits it meant, and for sharing my journey through Lyme.

Contents

PART ONE:

PART TWO:

PART THREE:

Foreword

In 1993, journalist Pamela Weintraub and her husband thought they were doing themselves and their two sons a favor by escaping from Queens to the sylvan New York suburb of Chappaqua, a town so famously bucolic Bill and Hillary Clinton made it their outpost after decamping from the White House. In time, however, the deer-friendly backyard where Weintraubs sons spent lazy afternoons building forts turned into the authors personal Love Canal. Tragedy lurked under every fallen leaf. Both her sons eventually contracted tick-borne Lyme disease, as did she and her husband. Their suffering dragged on for years.

The conventional dogma about Lyme disease, according to Allen Steere, the doctor who described it in 1977, holds that a onetime course of antibiotics is almost always entirely curative. But Weintraub quickly discovered that little about Lyme disease was as straightforward as Steere and his supporters in the public health establishment claimed. The tests used to diagnose a case of Lyme turned out to be primitive, sometimes wildly inaccurate, or, at best, unreliable. In addition, the official diagnostic criteria handed down from on high by the Centers for Disease Control and Prevention failed to apply to many patients who the doctors in heavily endemic regions actually saw in their practices.

Instead, as Weintraub discovered, the disease was both a masquerader and a changeling, not unlike another spirochete-induced disease, syphilis, in which overtly neurological symptoms emerged over time such that they were not always understood to be related to the initiating infectionin the case of Lyme, spirochetes transmitted by a tick bite. In fact, as Weintraub was to learn, neurological Lyme disease was a time bomb that, once established in the body, could lead to a host of devastating results from near-crippling exhaustion and nerve pain to memory loss, confusion, and, at its most extreme, a kind of Lyme dementia.

As the years of Weintraubs illness wore on, the quarrels among doctors, scientists, and public health officials became only more bitter and dogmatic, until the mainstream power brokers in medicine seemed to dump those who didnt respond to a short course of standard treatmentthe chronic Lyme sufferersinto a Bermuda Triangle of diseases. Nowhere is the view of chronic Lyme more hardened and, as Weintraub argues persuasively, unenlightened than in the highest reaches of the federal science establishment. Indeed, as recently as 2006, the federal government endorsed a document stating categorically that chronic Lyme doesnt exist.

To prepare readers for the bumpy ride, Weintraub creates a rich topographical as well as intellectual framework for her, at times, jaw-dropping tale of doctors and scientists behaving badly: the land of Lyme. We are nowhere near the Congo villages of Ebola fame, but, seemingly as dangerous, the backyard savannahs, as Weintraub describes them, of suburban soccer moms and soccer dads who dwell in false harmony with flourishing deer populations rife with Ixodes ticks carrying Borrelia burgdorferi, the Lyme spirochete, as well as pathogens causing babesiosis, anaplasmosis, and other infectious diseases in their tiny mouths and guts. Deer lovers stand forewarned: In this authors hands, Bambi just aint Bambi anymore, but then, thats one of Weintraubs strengthsshe takes no prisoners.

Weintraubs journalistic bona fides are impeccable. Shes a reporter with twenty-five years of science journalism and editing under her belt, a credential buttressed by solid academic training in her field and apprenticeships with important scientists. Those credits are on full display in this narrative. I suspect, however, that when the nuances of Lyme disease science bumped up against medical dogma that seemed increasingly inapplicable to her own experience of the disease, she must have felt as though she had fallen through the looking glass.