Cure Unknown: Inside the Lyme Epidemic

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Overview

In this nuanced picture of the intense controversy and crippling uncertainty surrounding Lyme disease, Pamela Weintraub sheds light on one of the angriest medical disputes raging today. The most comprehensive book ever written about the past, present, and future of Lyme disease, Cure Unknown exposes the ticking clock of a raging epidemic and the vulnerability we all share.
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Overview

In this nuanced picture of the intense controversy and crippling uncertainty surrounding Lyme disease, Pamela Weintraub sheds light on one of the angriest medical disputes raging today. The most comprehensive book ever written about the past, present, and future of Lyme disease, Cure Unknown exposes the ticking clock of a raging epidemic and the vulnerability we all share.
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Editorial Reviews

From the Publisher
“Pamela Weintraub's book is compelling, clear and troubling.”

–Patti Adcroft, editorial director of Discover magazine

“In Cure, Unknown, Pamela Weintraub has produced both the definitive book about Lyme disease and associated disorders and a survivor’s account of a grueling medical odyssey. Weintraub is a masterful science writer and storyteller, and she tackles the quarrels and quagmires surrounding this baffling illness with intelligence and pathos. This is an important and unforgettable book, destined to make a lasting contribution to the field of investigative health journalism.”

–Kaja Perina, editor in chief of Psychology Today

"A thoroughly researched and well-written account of the disease's controversial history."

—Jane Brody, New York Times

"Pam Weintraub, veteran science writer, weaves personal narrative with hard-hitting investigative journalism to bring the underground epidemic of Lyme and other tick-borne diseases up from under the

radar."

-Rebecca Wells, author of Ya-Yas in Bloom and Divine Secrets of the Ya-Ya Sisterhood.

"I sometimes wonder if the only investigative writers who will possess the necessary temerity to remove the white gloves and tackle these putative experts to the ground will be those, like Weintraub and the

late Randy Shilts, whose personal experience demands that they follow the rocky trail that leads to the truth."

-Hillary Johnson, author of Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome

Epidemic

"Millions suffering from symptoms of a mysterious disease need suffer confusion and loss no longer. If you want to know the real story behind Lyme disease and how to find your way back to health, read this book."

-Mark Hyman, MD, author of the New York Times bestseller, UltraMetabolism.

"Science journalism at its best."

—Amiram Katz, MD, Clinical Faculty, Neurology Department, Yale School of Medicine

"Weintraub turns a tragic yet eye-opening experience into a shocking exposure of what can happen when egos, greed, and peer pressure supercede objective evidence, allowing patients to suffer chronic,

disabling illness."

–Donna Chavez, Booklist

"Exhaustively researched and highly recommended."

–Tina Neville, Library Journal

"A tale of biological complexities, scientific turf battles, political intrigue, human egos and money – lots of it."

–Dorothy Kupcha Leland, Sacramento Bee

"Living with Lyme gave Weintraub both the insight and the dogged ambition to find out some truths ... rather than remaining stuck at the pro-Lyme, anti-Lyme debate, Weintraub spent many hours

interviewing researchers who are experts in the ticks that spread Lyme, and the bacterial spirochete, Borrelia burgdorferi, that causes it. What she found is that these researchers — at places like the

State University of New York at Stony Brook on Long Island, and the University of California at Davis — are slowly figuring out how complex the bacteria and the disease are. And Weintraub said, these

researchers, by and large, confirm what many Lyme patients have learned through bitter experience — the bacteria can cause a persistent infection that may not be treated easily by a couple of

weeks of antibiotics."

—Robert Miller, Danbury News-Times

"The view from inside the tick tornado: Sober but scary ...A science and health journalist, Weintraub writes clearly and passionately about a mysterious illness that has confounded physicians, patients and

scientists for more than three decades, while she tries to balance personal narrative and objective journalism... a comprehensive and compassionate guide to a dreaded illness named after a bucolic,

tick-infested town on Long Island Sound."

—Bill Williams, Hartford Courant

"In the war of information on Lyme disease, patient activist groups have started from a marked disadvantage to the medical establishment in terms of visibility and credibility. That may be changing, and science journalist Pamela Weintraub's new book, "Cure Unknown: Inside the Lyme Epidemic" (St. Martin's Press), could be one reason. Weintraub, a senior editor at Discover magazine, uses her family's protracted Lyme odyssey as the jumping off point for an exploration into the history, politics and, predominantly, the patient experience of the tick-borne disease."

—- Susan Morse, Washington Post

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Product Details

  • ISBN-13: 9780312378134
  • Publisher: St. Martin's Press
  • Publication date: 10/13/2009
  • Edition description: First Edition
  • Edition number: 1
  • Pages: 448
  • Sales rank: 518,006
  • Product dimensions: 5.40 (w) x 8.20 (h) x 1.30 (d)

Meet the Author

Pamela Weintraub is an author and journalist who specializes in health, biomedicine, and psychology. She is currently a consulting editor at Psychology Today and executive editor at MAMM magazine, and has served as editor in chief of OMNI and staff writer at Discover. Weintraub has written hundreds of articles for many national publications, including Redbook, Ms., McCall'sAudubon, and Health, to name just a few.  She lives in Connecticut.

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Read an Excerpt

Introduction

Navigating by Lymelight

Starting in the early 1990s, after we moved from a city apartment to a wooded property in Westchester County, New York, our family began to get sick. At first the illness was subtle: The vague headaches, joint pains, and bone-weariness seemed par for the course in our busy suburban lives. But as years passed, the symptoms intensified and multiplied, burgeoning into gross signs of disease.

My knees became so swollen that I descended the steps of my house while sitting. Swallowing my food, I choked. My arms and legs buzzed—gently at first, but then so palpably I felt like I was wired to a power grid. A relentless migraine became so intense I spent hours each day in a darkened room, in bed.

My husband, Mark, an avid tennis player with great coordination, began stumbling and bumping into walls. Formerly affable, he began exploding at offenses as slight as someone spilling water on the floor. He was an award-winning journalist with a love of literature and a vocabulary so vast he was our stand-in for the dictionary. But slowly he began struggling with memory and groping for words. Finally, ground to a halt, he left his job as editor in chief of the newsletter Bottom Line Health one day after realizing that he’d spent hours trying to read a single, simple paragraph.

Our youngest son, David, began to sleep—first so long that he could not do his homework or see his friends; eventually, so much (fifteen or more hours a day) that he could not get to class. Violating the strict attendance policy at his prep school, he was asked to leave.

Hardest hit was Jason, our oldest, who suffered fatigue and shooting pains starting at age nine, the summer we took up residence in our fairytale house in the woods. The doctors called these “growing pains” normal, but by age sixteen Jason was essentially disabled. He couldn’t think, walk, or tolerate sound and light. His joints ached all day long. On medical leave from high school, he spent his days in the tub in our darkened main-floor bathroom, drifting in and out of consciousness while hot water and steam eased his pain. As his condition worsened, as all sorts of lab tests came back negative, a raft of specialists at New York City’s top teaching hospitals suggested diagnoses from migraine aura (the dizzying buzz of a migraine) to fifth disease (a swelling of the joints caused by infection with parvovirus). Each diagnosis elicited a treatment, but none of them worked.

“What about Lyme disease?” I asked.

“There are too many symptoms here and he’s way too sick for Lyme disease,” responded the pediatrician, who declined to even test for it.

But by 2000, with answers still eluding us, the pediatrician drew fourteen vials of blood, testing for hormone imbalance, mineral deficiency, anemia, and a host of infections, including Lyme. A week later he contacted us, baffled. Just one test, a Western blot for antibodies against Lyme disease, had come back not just positive, but off-the-charts reactive. Jason was quickly reported to the Centers for Disease Control and Prevention (CDC) as an unequivocal case of Lyme disease. When the head of infectious disease at Northern Westchester Hospital put his imprimatur on the diagnosis, we had an explanation for Jason’s illness and an inkling as to what might be wrong with the rest of us, at last.

Our nightmare had just begun. As with the quest for diagnosis, almost everything about Lyme disease turned out to be controversial. From the length and type of treatment to the definition of the disease to the kind of practitioner we should seek to the microbe causing the infection (or whether it was an infection at all), Lyme was a hotbed of contention. It was the divisiveness surrounding the disease that had caused our pediatrician and the specialists we’d consulted to hold back diagnosis as Jason and the rest of us became increasingly ill.

For patients with early-stage Lyme disease the illness tended to be mild, and a month of antibiotic treatment usually offered a cure. But for those who slipped through the cracks of early diagnosis, for people like us, infection could smolder and progress, causing a disabling, degenerative disease that confounded doctors and thrust patients into the netherworld of unexplained, untreatable ills.

Despite the effectiveness of early treatment, withholding therapy had become increasingly common as a battle royal over Lyme’s essence spilled from medical centers and clinics into the communities where people got sick. The same doctors who routinely doused acne and ear infections with years of antibiotic often would not prescribe even ten days of such treatment for Lyme unless proof of infection was absolute. Meanwhile, the few doctors willing to treat the sickest patients with longer-term or higher-dose antibiotics could be called up for trial by medical boards, putting their practices and licenses at risk.

The war over Lyme had raged for twenty-five years when it swept us up in its madness. On one side of the fight were university scientists who first studied Lyme disease, initially writing it up in medical journals as an infection of the joints. The disease they described was caused by the spirochete Borrelia burgdorferi and transmitted to people by the bite of a deer tick. It was hard to catch and easy to cure no matter how advanced the case when first diagnosed. Late disease was rare, these academics said, because Lyme was recognized easily through a bull’s-eye rash and a simple, accurate blood test. Rarely was their version of the disease seen outside the Northeast, parts of California, and a swath of the Midwest.

To the horror of these scientists, the circumscribed disease of their studies had been hijacked by “quack suburban doctors” who saw Lyme everywhere, from Florida to Texas to Michigan, invoking so many signs and symptoms that they included every complaint under the sun. These heretical doctors, the scientists charged, were dispensing antibiotics like water, all the while raking in money from patients too deluded to realize they didn’t have Lyme disease at all. The patients had other things, the scientists said: sometimes mental disorders, but also chronic fatigue syndrome and .bromyalgia, illnesses with no known cause or cure.

On the other side of the fight, far from the ivory tower, the rebel doctors and their desperately sick patients insisted that Lyme and a soup of coinfections caused a spectrum of illness dramatically different from the one the scientists described. Knees didn’t always swell and the rash (rarely a bull’s-eye) often wasn’t seen. Instead the patients were mostly exhausted, in chronic pain, and dazed and confused. The mental condition they called “Lyme fog” robbed them of short-term memory, stunted their speech, and crippled their concentration. Brain infection could inflict a host of frank psychiatric problems from bipolar disorder and depression to panic and obsessive-compulsive disorder (OCD), they said, and Lyme could trigger autism or be confused with amyotrophic lateral sclerosis, known as Lou Gehrig’s disease, or ALS. Because their illness differed profoundly from the disease described in textbooks, because it often eluded blood tests, the patients went undiagnosed and untreated for years. As they struggled for answers, oncetreatable infections became chronic, inexorably disseminating, and causing disabling conditions that could never be cured. If treatment was to work at all, the heretic Lyme doctors said, it required high-dose antibiotics, often in combination or delivered intravenously, sometimes for months or years.

The patients, for their part, tried to comprehend why the academics dismissed their cases as false. The scientists were promoting an impossibly narrow version of Lyme disease to protect their early work and secure a windfall from Lyme-specific patents, some patients believed. A flow chart entitled “The Wall of Money” began circulating around support groups, connecting some of the researchers with U.S. patents and federal or industry grants. Other patients complained that university physicians consulted for managed care, making hundreds of dollars an hour dismissing Lyme diagnoses and advising rejection of their claims. The academics advanced their agendas, the patients charged, by reporting the doctors who treated them to disciplinary boards.

As medical tribunals swept through the Lymelands, primary care physicians became ever more cautious about treating or even diagnosing Lyme disease for fear of becoming targets themselves. Stepping into the breach, a few doctors—Ed Masters of Missouri, Charles Ray Jones of Connecticut, Ken Liegner and Joe Burrascano of New York—went to the mattresses for the patients, but with the Lyme war so brutal, thousands of cases were missed.

Lyme or not Lyme? Diagnoses could get mixed up. Dueling brain tumor stories make the point. A young woman from Australia went hiking in California. From that trip on her health declined. She eventually experienced such pain, disorientation, and inflammation that doctors thought she might die. She returned to the U.S. for treatment, and neurologists in Manhattan diagnosed a brain tumor. They actually operated, but when they opened her up, there was no tumor. It turned out the young woman had Lyme disease. She was treated with antibiotics and cured. A young man from New Jersey was diagnosed with Lyme disease and treated with antibiotics for months without impact. Finally he was sent to a local medical center, and further testing was done. Doctors discovered a brain tumor and operated to remove it. The boy from Jersey, like the girl from Australia, got well.

The more I investigated, the fuzzier the whole thing seemed. Doctors and labs report more than 23,000 cases falling within the CDC’s circumscribed definition for Lyme disease each year—a number the CDC estimates is 10 percent of the total such cases in the United States. At more than 200,000 new cases a year, Lyme had become one of the fastest spreading infectious diseases in the United States. But how many bona .de Lyme disease patients fell outside that umbrella? Thousands? Hundreds of thousands? More? With so many patients failing to see a rash and the blood tests so equivocal, it was impossible to say.

The line blurred still more because other ticks and infections contributed to the epidemic called “Lyme.” Babesia, a malarialike disease of fevers, headaches, sweats, and profound exhaustion, was almost as prevalent as Lyme disease itself in many areas. Patients sick for years despite aggressive treatment for Lyme disease “miraculously” recovered once Babesia was treated. A bacterial infection called ehrlichiosis, found in a quarter of Lyme ticks in Connecticut, New York, and many other places, including the South, could cause a draining, painful illness marked by fevers, headaches, confusion, and occasionally a rash. Many an “incurable” Lyme patient had been found to have this second, lurking infection; such patients were treated with doxycycline and generally got well. Added to the triad of Lyme-babesiosis-ehrlichiosis are other suspect pathogens inhabiting the same ticks: among them, forms of the rod-shaped bacterium Bartonella and Mycoplasma fermentans, both sometimes invoked as a cause of neuropsychiatric symptoms and chronic fatigue.

Finally, a series of newly discovered spirochetes inhabiting a diversity of ticks have been shown to cause a “Lyme-like” disease, including the classic Lyme rash, in regions overlapping with and extending way beyond traditional Lyme zones. The upshot: an illness that was a ringer for Lyme disease—except that sufferers didn’t test positive because they weren’t infected by the same spirochete as the one causing Lyme disease. With so many cases of true Lyme disease falling short of the CDC definition, and with emerging infections, real and potential, at the periphery of the hostile debate, chaos reigned.

In all the Sturm und Drang, anyone who fell ill could get caught in the mania. Sure, there were those diagnosed with Lyme disease who did not have it. But the more contentious the fight became, the more doctors were targeted for diagnosing outside the CDC definition or treating beyond official guidelines, the more the balance shifted the other way. All you had to do was live in our neighborhoods and meet our families, our children, to grasp how many had waited months and years for diagnoses that should have been rendered swiftly, missing the window of opportunity for early treatment and cure. Adding insult to injury, so many of those who were missed, like our son Jason, had text book perfect cases of classic Lyme disease in proven Lyme zones. They, too, were denied. First thousands, then hundreds of thousands, perhaps a million or more fell victim to the war over Lyme disease, getting so sick they were incurable, as the fight raged on.

I was a patient and a mother, but also a science journalist when my family was swept up in the Lyme war. The winds of that war carried us far from normal reality to a twilight zone of double-talk, an inside-out world with layers of obfuscation, where disease was dismissed as delusion and nothing was as it seemed. How had an affliction so cruel and insidious gripped the underbelly of the suburbs? How had so many patients of relative sophistication wound up victimized by a fight between doctors, ridiculed and marginalized as illness destroyed their lives? What was the truth about Lyme disease? Would I discover the answers in Lyme’s past or from present-day scientists toiling at the workbench, far from the maelstrom of the fight?

Because I was sick myself, my job as a journalist was complex. Some of the experts I interviewed would have deemed me suspect had they known my status, so I strived to draw the line between my life and my job. I attempted to do that which was almost impossible in Lyme: to lead a double life and inhabit two worlds. In the first I was one of the chronic patients, in the midst of a suspect illness. In the second I was a science journalist, discussing, with equanimity, the notion that patients like me were false.

“You cannot argue on the basis of anecdote and individual case history and speculation,” Leonard Sigal, the New Jersey rheumatologist and Robert Wood Johnson Medical Center professor, insisted when I asked him about our ilk. “This way lies madness. Where is the evidence?”

On the beat I looked for evidence, but within myself I felt what Sigal doubted taking hold. Without antibiotics I was sick but with them I was getting well.

As I fought Lyme in my life and struggled to restore my family’s health, the questions and contradictions haunted me. For the mother and patient, Lyme was an albatross, but for the science journalist, it was the story of a lifetime. I couldn’t walk away from it, not when it devastated my family, not when it inhabited my woods.

Excerpted from CURE UNKNOWN by Pamela Weintraub

Copyright@ 2008 by Pamela Weintraub

Published in 2008 by United state of America

All rights reserved. This work is protected under copyright laws and reproduction is strictly prohibited.Permission to reproduce the material in any manner or medium must be secured from the Publisher.

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Table of Contents

Foreword Hillary Johnson Johnson, Hillary

Introduction Navigating by Lymelight 1

Prologue: Second Journey Out 7

Pt. 1 Doors of Perception 23

1 Into the Woods 25

2 A Place in the Whirlwind 33

3 Son of a Preacher Man 40

4 Connecticut Genesis 43

5 A New Disease and a Ring of Fire 48

6 Finding Lyme's Counterculture 54

7 Hide in Plain Sight 59

8 The Epidemic Spreads 64

9 Crossing the Line 69

10 The Rocky Road 72

11 Then There Were Three 74

12 Night Falls Fast 77

13 Discovering the Spirochete 80

14 The Chasm Widens 89

15 How the Lyme World Split in Two 97

16 Lost in the Ruins: The Infestation of the Suburbs 105

Pt. 2 The Lyme Diaspora 111

17 Mutts Like Us: Lyme Tests and Tribulations 113

18 Patients Dispossessed 121

19 The Scourge of "Lime" Disease 126

20 Peeling the Onion 133

21 Family Therapy 141

22 Bicycle Boy and Other Lymebrains 144

23 A Devastating Realization 155

24 Longing for Lyme 158

25 A Nantucket Burning: I'm Diagnosed with Babesiosis 159

26 Photo Safari 163

27 Tick Menagerie: The Coinfections of Lyme Disease 165

28 Hole in the Donut: The Fight over Southern Lyme 172

29 Restricting Diagnosis and Keeping the Riffraff Out of Lyme 187

30 The Long Road Home 206

31 Reporting Our Pediatrician 209

32 The Lyme Inquisition: Doctors on the Run 213

33 A Note from the Underground 228

34 Second-Chance Kids 231

Pt. 3 A Search for Answers 235

35 Once Bitten: Accepting the Spirochete's Endless Love 237

36 Secrets of an Evil Genius: The Evidence for Persistence 241

37 Mother Makes Four 253

38 The Big Sleep: Our Younger Son Falls Ill 256

39 Houston Calling 260

40 PuttingTreatment to the Test 263

41 Busted Flat in Chappaqua 277

42 Resurrection 280

43 Lyme Disease and Immunity: The Search for the Golden Fleece 282

44 How I Cured My Own Lyme Disease 290

45 Pay It Forward 293

46 A Family Affair 296

47 Red-Flagged at Blue Cross: The Role of Managed Care 298

48 The Vaccine Connection: Lyme Gets a Business Model 309

49 Over and Out, Colorado 320

50 The Falmouth Reunion 322

51 Getting Dr. Jones 324

52 The Never-Ending Story: What Happened to My Family 331

53 Starting Over: Don't Get Slymed Again 339

54 And the Bands Play On 347

Notes and References 355

Index 399

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Customer Reviews

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  • Posted January 3, 2009

    I Also Recommend:

    Solid and Hard Hitting

    Pamela Weintraub has done an incredible job sifting through massive amounts of often conflicting information to deliver a readable and engaging synthesis of Lyme Disease in America. While there are a number of books on the subject Cure Unkown represents a balanced, factual account of the controversy surrounding this misunderstood disease. Ms. Weintraub has woven her analytical tour de force with the moving account of her family's journey through the dark, Kafkaesque landscape of today's medical establishment. This is a must read for anyone interested in better understanding Lyme Disease.

    3 out of 3 people found this review helpful.

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  • Posted May 22, 2009

    more from this reviewer

    Cure Unknown: Inside the Lyme Epidemic is a well written shocker that makes the case act now before it is too late

    The four Weintraub's left New York City to live in a dream home in Chappaqua in Westchester County as they thought this would be better for the kids. The parents thought the open woods with deer would prove healthier than the smog city. However, within a very short time from when they relocated, one of the sons becomes ill followed by the other boy. Soon afterward the father and finally the mother became ill also. Each had similar aches and pains that were progressively getting worse. The local physicians considered Lyme disease infection, but decides that was not the cause. The family turned to the best medical facilities in New York and received similar no help responses as the cures were making the disease worse. Desperate, Pamela Weintraub decided to use her skill as a science writer to research the symptoms. What she reports in this insightful frightening book is shocking as she affirms the widening spread of Lyme disease with the medical field in her opinion buried in the sand or ignorant. Ms. Weintraub, whose sons remain very ill, exposes the health system's failure to react to a growing epidemic that could turn pandemic rather shortly. Cure Unknown: Inside the Lyme Epidemic is a well written shocker that makes the case act now before it is too late.---------

    Harriet Klausner

    2 out of 2 people found this review helpful.

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  • Anonymous

    Posted January 14, 2012

    OMG WHAT A WONDERFUL EYE-OPENER

    book was very well written and researched. Everyone needs to read this.
    Shame on our Government and the Scientists for the cover-ups.

    1 out of 1 people found this review helpful.

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