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Cure Unknown: Inside the Lyme Epidemic Hardcover – Jun 10 2008

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Product Details

  • Hardcover: 408 pages
  • Publisher: St. Martin's Press; 1st edition (June 10 2008)
  • Language: English
  • ISBN-10: 0312378122
  • ISBN-13: 978-0312378127
  • Product Dimensions: 15.2 x 2.9 x 22.9 cm
  • Shipping Weight: 635 g
  • Average Customer Review: 5.0 out of 5 stars 3 customer reviews
  • Amazon Bestsellers Rank: #1,164,374 in Books (See Top 100 in Books)
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Product Description


“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

Pamela Weintraub is an author and journalist who specializes in health, biomedicine, and psychology. She is currently senior editor at Discover Magazine and has previously held positions at Psychology Today and OMNI, where she served as editor in chief. Weintraub has written hundreds of articles for many national publications, including Redbook, Ms., McCall's, Audubon, and Health, to name just a few. She lives in Connecticut.

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Inside This Book

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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
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Format: Paperback
Pam Weintraub tells a tale almost too scary to believe. And I might not if I didn't have ME (CFIDS), another common and extremely disabling infectious disease also ignored and denied by the CDC, NIH and other medical powers that be for decades. This is an extremely important story that everyone needs to read. The book is well written and chock full of useful info on diagnosis and treatment. Highly Recommended.
If you enjoy this book (and you will), check out Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic for the spellbinding medical-thriller story of ME (CFIDS).

UPDATE May 2013:
This book and the excellent documentary movie Under Our Skin motivated me to get the Igenex PCR test for Lyme, which I understand is one of the best test. And guess what, I was positive after having negative results over the years from the standard shoddy test that CDC has attempted to mandate and claims is 100% accurate. Well, I was one of the 40% false negatives, which is far from 100% accuracy. I got seven weeks of oral antibiotics which I believe helped me somewhat. If I had taken the right test, ie, PCR, which CDC warns against, 10 years ago when I first got sick, chances are I would have made a full recovery in a few weeks. Shame on you, CDC and Infectious Disease Society of America. Thank God for this book!! Without it, I may never have been diagnosed.
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Format: Paperback
Pamela Weintraub's book gives a very clear explanation of Lyme disease, its ravages, and why Lyme has become such a politically and medically controversial subject in North America today.
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Format: Paperback Verified Purchase
Excellent book. A must read!
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Most Helpful Customer Reviews on Amazon.com (beta)

Amazon.com: HASH(0xa38caf84) out of 5 stars 134 reviews
204 of 213 people found the following review helpful
HASH(0xa38d4b1c) out of 5 stars Doctor recommended, a compelling read! June 11 2008
By Dr Tedde M. Rinker - Published on Amazon.com
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. 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
72 of 76 people found the following review helpful
HASH(0xa38d4f24) out of 5 stars A Must Read for All Parents June 18 2008
By sharilee - Published on Amazon.com
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.
53 of 57 people found the following review helpful
HASH(0xa38d4f9c) out of 5 stars The New Tuskegee June 12 2008
By Skydog - Published on Amazon.com
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.
31 of 32 people found the following review helpful
HASH(0xa38d4d44) out of 5 stars Required reading for EVERYONE March 23 2009
By Kimberly Kooyers - Published on Amazon.com
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. Not just these persistent spirochetes or range of co-infections, but also the misguided mainstream doctors and the powerful ISDA. Thanks to Pamela Weintraub and her generosity of spirit and her courageous book, I have the information I need to reject the status quo, find the right treatment, and work towards getting better.

39 of 42 people found the following review helpful
HASH(0xa38d8480) out of 5 stars Excellent account of Lyme disease & current medical policy March 26 2010
By free thinker - Published on Amazon.com
Format: Paperback Verified Purchase
Ms. Weintraub, editor of the science magazine Discover, provides a detailed and well-researched account of her family's struggle with Lyme disease and the devastation it can cause. Also included are other gripping case-studies, a very interesting and useful history of the discovery of this tick-born illness, and a summary of current research and findings regarding Borrelia burgdorferi (the bacteria that causes Lyme). The account of current standard medical policy as dictated by the IDSA (Infectious Disease Society of America) and the CDC (Centers for Disease Control) offer a disturbing, and often tragic, portrait of how basic science research and evidence-based clinical practice can be ignored in favor of poor and unreliable "standard diagnostic tests" and guidelines that ignore vast bodies of evidence and research, yet form today's mainstream approach to medicine. Indeed, the most disturbing part of the Lyme disease epidemic is not the disease itself (which, if detected early, can usually be successfully treated with antibiotics), but the distortion of the peer-reviewed research by a few, so-called "medical experts" that have set current medical diagnostic guidelines. The result of this is the under-diagnosis of Lyme disease by several orders of magnitude. Under-diagnosis and poor detection by the majority of doctors leads to dissemination of the bacteria n the body, which burrow into almost every tissue type, most notably the central and peripheral nervous system, heart, and joints. Once disseminated, the disease becomes more serious and can cause long-lasting and permanent damage. In late-stage, or disseminated Lyme disease, treatment becomes more difficult, as antibiotics often take months..if not years..to reach bacteria in the brain and nervous system. Worse, the bacteria can form cysts and go dormant...and survive treatment, only to cause relapse once the Lyme patient stops treatment.
The most frustrating-and tragic-aspect for patients is the lack of doctors that are knowledgeable about the varied symptoms of Lyme disease. Lyme victims can suffer severely for years while medical doctor's assure them that they are "fine". Nothing could be further from the truth.
I write from personal experience with Lyme disease. I am a research scientist with a doctoral degree in biology. I was bitten by ticks in Virginia in 1987 and subsequently became ill with severe fatigue, fevers, headaches, and other flu-like symptoms. I was not diagnosed as having Lyme disease until 2005. I was ill for 17 years despite untold visits to innumerable doctors and specialists. The doctor who ultimately diagnosed the disease (along with another tick-born co-infection, Babesiosis) worked outside of the insurance system. I was treated for almost a year with high-dose antibiotics. All of my doctors (including infectious disease specialists and neurologists from the Cleveland Clinic and University Hospitals/Case Western Reserve medical centers) did not concur with the diagnosis of Lyme (despite positive western blot bands-deemed "equivocal" by CDC non-science based standards AND a positive diagnosis for a co-occurring tick born disease AND textbook clinical symptoms presented for 17 years), and ALL told me that I did not need further antibiotic treatment. I foolishly stopped antibiotic treatment based on their recommendations when I neared the 1 year mark.
In late 2008 I started to feel ill again, and in 2009 I came down with a relapse of a full-blown neurological infection due to Lyme disease. Symptoms included, dizziness,insomnia (although previously I had suffered from Lyme induced severe and debilitating fatigue) extreme sensitivity to sound, light sensitivity, involuntary muscle spasms and contraction, especially in the throat and neck area; tingling and numbness in the hands and feet, making it difficult to type and walk in a coordinated fashion; racing heartbeat, difficulty swallowing..to the point where I could only swallow a liquid protein drink; and the physical sensation of constant panic that would not subside. I, like many other Lyme sufferers, had to quit my job as I became scarily disabled in an extremely short timespan. Despite the fact that my neck, face, and shoulder muscles were visibly jerking and involuntarily contracting ...(in addition to the previous symptoms) my well-known neurologist (a movement disorder specialist) told me I had been treated adequately for Lyme..and since he admitted he didn't know anything about Lyme anyway, he didn't believe that this was the cause (and prescribed me additional seizure-control medications that did NOTHING; and told me to come back in a year). A psychiatrist diagnosed me with anxiety disorder...the classic diagnosis for Lyme sufferers who are told it is "stress" (yeah, right, I was STRESSED because my BRAIN was being attacked and I could not work or take care of my child). I had to travel to PENNSYLVANIA because I could not get adequate treatment in Cleveland, Ohio...despite the presence of the "best" medical centers. I visited what is known as a "Lyme literate doctor"...These are doctors who are willing to treat Lyme patients with high dose, long-term antibiotics (which the Infectious Disease Society of America claims are DANGEROUS and DO NOT work) My doctor,in Pennsylvania, based on my clinical history and test results, prescribed high doses (4000 mg/day) of amoxicillin. I have now been taking these for almost a month. I have had no discomfort or problems with the antibiotic therapy. The difference between my current condition...almost normal...and what it was a month ago..is nothing short of a medical miracle for me. I have my life back...I can take care of my daughter...I feel like working again..I can type! Read! sleep! EAT solid food! My symptoms have been reduced by 95%. I have stopped taking all other medications that had been prescribed during my relapse (muscle relaxants, anti-depressants, anti-seizure medications)and I feel tremendously improved and positive about life again. I am thankful to the few doctors who took the time to review my symptoms carefully and diagnose me...(although this can even be done by typing the symptoms into GOOGLE, so it is not rocket science).
I have sympathy for the untold THOUSANDS of people who suffer undiagnosed or who have been treated improperly. It is a tragic mystery to me that in the U.S. doctors can legally perform abortions on demand, but can get prosecuted and harassed for prescribing ANTIBIOTICS due to a SERIOUS BACTERIAL INFECTION THAT HAS BURROWED INTO NERVOUS SYSTEM TISSUE. Patients CANNOT GET INSURANCE TO PAY FOR ANTIBIOTICS. Many patients become disabled.
Skeptical? Check on YouTube...see with your eyes what patients are going through-they are not "making their symptoms up"; tragically, YOUNG PEOPLE AND CHILDREN are suffering terribly.
NOTE TO MEDICAL DOCTORS AND PUBLIC HEALTH WORKERS: a small medical panel that does not disclose the "why" or the scientific justification for conclusions CANNOT BE USED FOR A BLANKET POLICY PRESCRIPTION. Thousands of "anecdotal stories" (as they are called, and dismissed by.. members of the Lyme IDSA panel) of symptoms and treatment response DO CONSIST of scientific evidence. This type of evidence is called deductive science...where one uses observation and evidence from the field to form a conclusion. The great scientists of our day use this method all the time. A famous example would include scientists of the stature of, say..Charles Darwin! When reviewing INDUCTIVE SCIENCE results, (based on results of experiments published in peer reviewed journals) ALL published studies should be reviewed and included in the review, or summary science article. What has happened is that the IDSA results DO NOT include all studies and research conducted on Lyme bacteria. A good review paper in a journal, or a review by a panel, must, at least, include in their methods the NUMBER OF STUDIES PUBLISHED IN THE SCIENTIFIC LITERATURE THAT WERE UTILIZED IN THEIR CONCLUSION VS. THE NUMBER OF STUDIES ACTUALLY PUBLISHED AND AVAILABLE IN THE SCIENCE LITERATURE (this is called SAMPLING EFFORT..A BASIC METHOD USED AND REQUIRED IN PUBLISHED SCIENCE PAPERS); these should tabulate ALL RESULTS,not just a few- and then provide a recommendation based on the consensus of the scientific/medical community. Recommendations used to determine health-policy and insurance coverage should be open to CONSULTATION by the wider community of research scientists and doctors. Only then should recommendations be translated into policy. We are talking lives here. Lyme health policy as is currently practiced ignores a huge amount of biological and clinical information, and thus, current public health policy is dictated by SHODDY SCIENCE CONDUCTED by A FEW PEOPLE. What a pity. Those interested should watch "Under our skin", a documentary about Lyme disease, to learn more.
Thank you Ms. Weintraub, for an excellent book. It was extremely useful and interesting to me. I hope you and your family can one day recover their health.