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Cure Unknown: Inside the Lyme Epidemic [Hardcover]

Pamela Weintraub (Author)
4.9 out of 5 stars  See all reviews (84 customer reviews)

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Book Description

0312378122 978-0312378127 June 10, 2008 First Edition
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.
 

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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 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

Product Details

  • Hardcover: 432 pages
  • Publisher: St. Martin's Press; First Edition edition (June 10, 2008)
  • Language: English
  • ISBN-10: 0312378122
  • ISBN-13: 978-0312378127
  • Product Dimensions: 9.5 x 7.2 x 1.3 inches
  • Shipping Weight: 3.2 pounds (View shipping rates and policies)
  • Average Customer Review: 4.9 out of 5 stars  See all reviews (84 customer reviews)
  • Amazon Best Sellers Rank: #165,556 in Books (See Top 100 in Books)

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Customer Reviews

84 Reviews
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 (78)
4 star:
 (3)
3 star:
 (3)
2 star:    (0)
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Average Customer Review
4.9 out of 5 stars (84 customer reviews)
 
 
 
 
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Most Helpful Customer Reviews

150 of 157 people found the following review helpful:
5.0 out of 5 stars Doctor recommended, a compelling read!, June 11, 2008
By 
Dr Tedde M. Rinker (Los Altos, CA United States) - See all my reviews
(REAL NAME)   
This review is from: Cure Unknown: Inside the Lyme Epidemic (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. Those of us who have Lyme disease, or treat Lyme disease, know it to be as devastating and disabling as a HIV infection, and in many cases, as difficult to cure. Give this book to doctors, to journalists, to scout leaders who take kids into the woods, to your friends who go camping, gardening, horseback riding; to your friends with furry pets, or those who enjoy the deer in their yards. We have a serious growing epidemic in this country, affecting young and old. Let's wake ourselves up to proper treatment and prevention. Dr. Tedde M. Rinker, Redwood City, California
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45 of 48 people found the following review helpful:
5.0 out of 5 stars A Must Read for All Parents, June 18, 2008
By 
sharilee (Worcester, MA) - See all my reviews
This review is from: Cure Unknown: Inside the Lyme Epidemic (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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38 of 41 people found the following review helpful:
5.0 out of 5 stars The New Tuskegee, June 12, 2008
This review is from: Cure Unknown: Inside the Lyme Epidemic (Hardcover)
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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Inside This Book (learn more)
First Sentence:
In the year 1993, I spread a map across the sunken living room of our co-op apartment in Forest Hills, Queens, and marked a bull's-eye at Grand Central Terminal, where trains come in from the 'burbs. Read the first page
Key Phrases - Statistically Improbable Phrases (SIPs): (learn more)
tick bite, golden fleece, gallbladder study, erythema migrans rash, living spirochetes, deer preserve, burgdorferi spirochetes, lone star tick, swollen knees
Key Phrases - Capitalized Phrases (CAPs): (learn more)
Cure Unknown, New York, The Lyme Diaspora, Stony Brook, Allen Steere, Doors of Perception, Joe Burrascano, New Jersey, Pat Smith, Ken Liegner, United States, Leonard Sigal, Charles Ray Jones, Polly Murray, Vicki Logan, Shelter Island, Dave Martz, Old Lyme, Yale Medicine, Long Island, Brian Fallon, Sheila Statlender, Willy Burgdorfer, Peter Welch, Mount Kisco
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Front Cover | Table of Contents | First Pages | Index | Surprise Me!
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