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Cure Unknown: Inside the Lyme Epidemic Hardcover – June 17, 2008
| Pamela Weintraub (Author) Find all the books, read about the author, and more. See search results for this author |
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A groundbreaking and controversial narrative investigation into the science, history, medical politics, and patient experience of Lyme disease told by a science journalist whose entire family contracted the disease.
Pamela Weintraub paints a nuanced picture of the intense controversy and crippling uncertainty surrounding Lyme disease and sheds light on one of the angriest medical disputes raging today. She also reveals her personal odyssey through the land of Lyme after she, her husband and their two sons became seriously ill with the disease beginning in the 1990s.
From the microbe causing the infection and the definition of the disease, to the length and type of treatment and the kind of practitioner needed, Lyme is a hotbed of contention. With a CDC-estimated 200,000-plus new cases of Lyme disease a year, it has surpassed both AIDS and TB as the fastest-spreading infectious disease in the U.S. Yet alarmingly, in many cases, because the disease often eludes blood tests and not all patients exhibit the classic "bulls-eye" rash and swollen joints, doctors are woefully unable or unwilling to diagnose Lyme. When that happens, once-treatable infections become chronic, inexorably disseminating to cause disabling conditions that may never be cured.
Weintraub reveals why the Lyme epidemic has been allowed to explode, why patients are dismissed, and what can be done to raise awareness in the medical community and find a cure. The most comprehensive book ever written about the past, present and future of Lyme disease, this exposes the ticking clock of a raging epidemic.
- Print length432 pages
- LanguageEnglish
- PublisherSt. Martin's Press
- Publication dateJune 17, 2008
- Dimensions6 x 1.12 x 9 inches
- ISBN-100312378122
- ISBN-13978-0312378127
Editorial Reviews
From Booklist
Review
“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 theradar.” -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 thelate 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 SyndromeEpidemic ”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 hoursinterviewing 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 theState 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, theseresearchers, 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 ofweeks 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 andscientists 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
About the Author
Excerpt. © Reprinted by permission. All rights reserved.
IntroductionNavigating by LymelightStarting 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 ...
Product details
- Publisher : St. Martin's Press; First edition (June 17, 2008)
- Language : English
- Hardcover : 432 pages
- ISBN-10 : 0312378122
- ISBN-13 : 978-0312378127
- Item Weight : 1.55 pounds
- Dimensions : 6 x 1.12 x 9 inches
- Best Sellers Rank: #2,173,990 in Books (See Top 100 in Books)
- #1,154 in Viral Diseases (Books)
- #1,379 in Communicable Diseases (Books)
- #4,289 in Medical Professional Biographies
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If you suffer with Lyme disease, be prepared for a very frustrating project as you try to follow the chapters that jump from story, to story, to interview and back again. Important dates are hard to remember and research chapters packed so full of critical facts that you will need a highlighter and notepad to digest all the information.
I found it extremely difficult to read not only because of the format but also because of the information. No matter how many times I re-read a chapter, for the most part I couldn't help but want each to end differently, like watching "Gone With The Wind" and hoping Rhett won't walk away at the end.
The current situation and meticulously documented facts are frustrating indeed, however, your determination to read the entire book will be rewarded as mine was, with the precious gift of understanding.
We who have Lyme disease are the victims. We suffer daily with the tragedy of how Lyme disease is treated by mainstream medicine. We suffer the humiliation of being told a disease doesn't exist in spite of the fact that it is medically proven with reams of documentation from top scientists. We suffer with the unbearable financial burden. We suffer the loss of friends. We suffer the loss of our lives (as we knew them), and unfortunately our story can't be re-written.
We are suspended in the fog of our disease along with the bigger fog of medical deception while doctors under-treat if they treat at all, and certain highly placed medical doctors "fix" tests to prove their theories instead of searching for solutions.
This state of affairs would be dreadful with any disease but for the raging epidemic that faces our nation today with Lyme disease, it is a crime beyond belief.
And yet the author does provide hope.
There is hope for a political change with Connecticut's Attorney General investigating the conflict of interest for the authors of the current IDSA's guidelines (Infectious Disease Society of America) for diagnosis and treatment of Lyme disease.
There is also hope for the medical community to redeem itself with the advent of new technologies and technicians.
For instance, a new team of top researchers currently gather under the leadership of infectious disease specialist Dr. Benjamin Luft (Stony Brook University) to methodically sequence every gene in every strain of B. burgdorferi which will allow diagnosticians to test for over 1800 possible proteins instead of the ten limited proteins as is now done with the western blot.
The Luft team is also testing a new antibiotic "Tigecycline" which kills spirochetes fast, possibly eliminating the need for such long courses of antibiotics.
An exciting hope for a new vaccine is being developed by Eugene Davidson, a molecular biologist who has shattered spirochetes using ultrasound and begun trials injecting the tiny pieces (non-infectious on their own) into laboratory animals, and thus far producing total immunity.
I plan to follow these developments very closely on my blog at [...] and desperately hope that meaningful answers will come before it is too late for me and others like me. Smiling at my grandson, I am confident that they will come in time to protect him.
Weintraub's family seems to have had an unusually high degree of sensitivity to one or another of the spirochetes charged with causing Lyme disease. She and a large percentage of the fellow sufferers with whom she's ultimately been able to network have endured years of crippling pain, enervation, and disorientation. Many of these people had trouble getting their family physicians to reach an initial diagnosis of Lyme disease, due to the equivocal nature of the test blots used. Then once they had been at least tentatively diagnosed, they had even more trouble getting their doctors to continue prescribing the massive doses of antibiotics over the months and years it took to make any difference in their condition. As a result, many of these patients have turned to the handful of doctors who surreptitiously continue to prescribe the antibiotics for them, risking their medical licenses in the process.
It might be difficult for the average reader lucky enough to enjoy relatively good health to relate to this sort of on-going medical extremity. It becomes even more difficult to relate after Weintraub tells how her family members' actions might have occasionally contributed to re-activating the disease. For example, she tells how one of her children, after being virtually bedridden for years, finally rallied under his regimen of antibiotics and became strong enough to attend an area University. Knowing her family members' ultra adverse reaction to whatever was injected into them by those deer ticks endemic to the northeastern region, she had always had the sorry task of keeping them away from any exposure by keeping them away from nature. No gardening, no walks in the woods, no jumping into piles of autumn leaves. All these delights were forever foreclosed to them. She hoped her children would continue to take the same precautions as they became well enough to once more go out into the world.
But when she first visited this son on campus, she was horrified to see him running BAREFOOT across a lawn. And sure enough, soon afterwards, his symptoms returned with a vengeance and laid him low again. In effect - back to square one.
So I could sympathize with even the most callous doctor's dismissal of these cases. I finished the book feeling similarly helpless and frustrated - and still very far from any answers.

