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Cure Unknown: Inside the Lyme Epidemic Hardcover – June 10, 2008

4.8 out of 5 stars 86 customer reviews

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Editorial Reviews

From Booklist

*Starred Review* When journalist Weintraub and her family moved from their cramped, treeless home in New York City to a spacious, tree-shaded manse in suburban Chappaqua, they believed it was all good. Or at least the big yard with deer cavorting in nearby woods would be better, healthier, than their city digs. Within a short time, first one son, then the other, became sick with a series of increasingly debilitating disorders. Soon Weintraub and her husband presented a laundry list of similar complaints, many serious enough to threaten to sidetrack their careers. The family turned to local physicians for answers. Lyme disease, an infection communicated by the bite of a tick carried by those cavorting deer, was mentioned but discounted for a variety of reasons. Weintraub turned to the most prestigious medical centers New York had to offer and got similar responses. Hearing one implausible diagnosis after another and, worse, seeing no improvement in their individual conditions, the credentialed science writer began independent research and turned up what amounts to a controversy as contentious as creationism versus evolution. Weintraub turns a tragic (her children are still unwell) 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

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

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Product Details

  • Hardcover: 432 pages
  • Publisher: St. Martin's Press; 1 edition (June 17, 2008)
  • Language: English
  • ISBN-10: 0312378122
  • ISBN-13: 978-0312378127
  • Product Dimensions: 6 x 1.1 x 9 inches
  • Shipping Weight: 1.4 pounds
  • Average Customer Review: 4.8 out of 5 stars  See all reviews (86 customer reviews)
  • Amazon Best Sellers Rank: #908,168 in Books (See Top 100 in Books)

Customer Reviews

Top Customer Reviews

By Dr Tedde M. Rinker on June 11, 2008
Format: Hardcover
As a California physician, I have found myself diagnosing Lyme disease in an increasing number of patients who come to me with vague, multi-system complaints, but certain consistent patterns: living, working or playing in outdoor brush or field areas (gardening, golf, hiking, camping)is the first, but many have only a little outdoor exposure. Second, complaints of the slow onset of stiff, aching joints that get better and worse, sore muscles, that spasm, tingle and turn numb off and on, headaches and fatigue, problems with sleep, an up and down course that slowly gets worse. Pamela Weintraub, a professional writer and editor, tells her story of her family's move to a rural New York community as healthy active people, only to have all four family members contract Lyme disease in the early 90's, and face not only the disability of this infection but also the confusing double talk of a medical community in denial. She tells not only her story but those of others, and in the telling reveals the difficulties in getting an accurate diagnosis, in finding a doctor to believe and treat the patient, and in being able emotionally and financially to continue the treatment until the disease is resolved. If you are a patient with Lyme disease, perhaps you will learn some things you didn't know before. If you are someone who has believed that perhaps Lyme disease is a myth, or that the people who have it are exaggerating, this is the book for you. If you are a physician, and have quoted the Infectious Disease Society of America's treatment guidelines to a suffering patient to explain why you will not treat them, or will only treat them for three weeks- this is the book for you.Read more ›
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Format: Hardcover
I'm not a doctor, nor a medical researcher. But I am a parent who's been fighting for the life of my teenage daughter who has now been diagnosed with Lyme Disease + 2 co-infections. I have a biology degree and have been through a lot of illnesses myself, but I've never seen anything like the story of Lyme. This book is a must-read for all parents. It is a fact-based narrative that tells it like it is, from the political in-fighting in the medical community to the important research that's not getting the attention it should. And the stories it tells about those infected with Lyme are mesmerizing. We fight for a diagnosis, then we fight for treatment. If my family wasn't living this story ourselves, I'd think this was a Stephen King novel.
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Format: Hardcover Verified Purchase
Superb book that reads like a scientific who-done-it. Rarely has Lyme Disease been as accurately presented in the variety of symptoms, treatments and policies. But most of all it describes a heartless medical bureaucracy that sacrificed thousands of families into bankruptcy, permanent illness and even death to satisfy insurance company lobbyists. Lyme is the Tuskegee experiment of this century.
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Format: Hardcover
I just finished Pamela Weintraub's Cure Unknown, required reading for anyone with Lyme disease. But really, EVERYONE should read this. To protect yourself, your family, and your friends, not just from this rising epidemic, but also from our broken medical system where misdiagnosis of Lyme is the norm--not the exception--and the powers that be seem to have their own interest at heart.

Weintraub, as a science journalist, herself and her family afflicted with Lyme, opens your eyes to the limitations of mainstream doctors and uncovers disturbing efforts by the CDC and IDSA to under-treat and even deny the existence of a debilitating disease affecting millions.

Referring to the authors of the IDSA guidelines on the treatment of Lyme, Weintraub writes: "They consulted for big pharma and owned Lyme related patents; they received fees as expert witnesses in medical malpractice, civil, and criminal cases related to Lyme disease; and they were paid by insurance companies to field--and help reject--Lyme related claims. Of the fourteen authors, nine received money from vaccine manufacturers and four were funded to create test kits, products that would be more likely to reap profit if the definition of Lyme disease remained essentially unchanged."

The stories in this book will make you angry--babies, children, teenagers, moms, dads, doctors themselves--suffering from chronic, debilitating Lyme, being told that it's all in their head, or to be misdiagnosed with developmental disabilities, chronic fatigue, fibromyalgia, multiple sclerosis, arthritis, bipolar disorder, Parkinson's or even ALS.

Sadly, I concur with someone who said to me, "this book is more disturbing than hopeful." But, information is power. And now I know what I'm reckoning with.
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Format: Hardcover
I came down with Lyme disease in July 08. I had 4 weeks of antibiotics. I still had shocking sensations and a buzzing ear when I saw an infectious disease doctor. He told me to ignore it. One month later the joint pain started. My ear began to constantly ring and my muscles twitched. I found it hard to concentrate at my job as an engineer.

I visited numerous doctors and found them to be exactly as explained in this book. In living this nightmare I have seen the truth in what Weintraub portrays in her pages first hand. This disease and the co-infections that can accompany it have been pushed under the carpet by mainstream medicine and those that are afflicted are left with the diagnosis of an unproven "immunological response."

I for one believe that unless they can prove their point unequivocally that antibioitics are of no further use that those that want to try the treatment should be able to, especially since many have found that they are helped by them.

It is disgusting how we can waste so many billions of dollars, but research dollars for this disease remains paltry. Sadly with the current economy the future will probably be worse.
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