Cure Unknown: Inside the Lyme Epidemic

by Pamela Weintraub

When Pamela Weintraub, a science journalist, learned that her oldest son tested positive for Lyme disease, she thought she had found an answer to the symptoms that had been plaguing her family for years—but her nightmare had just begun.  Almost everything about Lyme disease turned out to be deeply controversial, from the microbe causing the infection, to the length and type of treatment and the kind of practitioner needed.
On one side of the fight, the scientists who first studied Lyme describe a disease transmitted by a deer tick that is hard to catch but easy to cure no matter how advanced the case. On the other side, rebel doctors insist that Lyme and a soup of “co-infections” cause a complicated spectrum of illness often dramatically different – and far more difficult to treat – than the original researchers claim. Instead of just swollen knees and a rash, patients can experience exhaustion, disabling pain, and a “Lyme fog” that leaves them dazed and confused. As patients struggle for answers, once-treatable infections become chronic.
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.

Genres: Nonfiction, Health, Medical, Science, History, Disease, Reference

448 pages, Paperback

First published May 27, 2008

Reviews

[Karen · Rating 5 out of 5]

Excellent piece of investigative journalism about the history, politics and medicine surrounding the heated lyme debate. This book will enlighten you, disturb you, and anger you, and should be read by not just patients affected by lyme, but anyone who wants to learn more about how our health care system can go so terribly wrong when money, egos, and politics get involved.

[E.P. · Rating 5 out of 5]

It's hard to fathom, especially from the outside but also from the inside, the madness surrounding the Lyme epidemic. How could such a widespread, debilitating, and potentially deadly disease have been allowed to flourish not only unchecked but untreated and unresearched, even actively denied, for so many decades? Why did it take me, personally, almost 25 years to be diagnosed when, as it turned out, I had a known history of tick bites and grew up in an area that, it turns out, had a serious outbreak of Lyme disease just when I first became sick? Why is there no good treatment for the disease, or even reliable testing?

Pamela Wientraub delves into all those issues. Weaving the personal and the political--Weintraub and her entire family were infected when they moved to the suburbs in the 1990s--she describes her own family's fight with this insidious illness, and the broader picture of what was going on in the background.

The personal stories are interesting and will make anyone struggling with the disease feel validated in their lack of validation by the medical establishment, and are likely to tug on the heartstrings of those who haven't had first-hand experience with Lyme disease (yet--your time is likely to come). More interesting still, though, is the documentation of how one of the major epidemics of the 20th and 21st centuries has been allowed to be swept under the rug, its very existence played down or outright denied.

Part of the problem is the nature of the pathogen and its consequences: Borrelia is a stealth pathogen, sneaking in and wreaking havoc slowly. People with Lyme disease don't normally suddenly hemorrhage blood from their eyeballs and die, although I *have* had several incidents where I thought I was having a stroke--only to be appear perfectly normal to everyone around me. Instead, most of us become miserable and confused, with neurological problems that don't always show up on regular scans and debilitating fatigue and weakness that is labeled a "subjective" symptom, as if a formerly athletic person, often with detailed and consistent records of their distances and times, losing most or all of their ability to walk is a "subjective" symptom.

Furthermore, as Weintraub discusses, borrelia is difficult to culture and our current serological tests are sadly lacking, even if one only considers borrelia burgdorferi sensu stricto and not all the other strains and substrains. And then there's the definition of the disease...

Perhaps the most important aspect of the book is how it delves into the controversy surrounding the definition of the disease (is it something that causes arthritis? Or neurological problems?) and how that was affected by the push to find a vaccine. I, like, as far as I can tell, Weintraub, am more or less pro-vaccine in general, but in reading about the Lyme vaccine one can't help but think that the anti-vaxxers have a point, they've just targeted the wrong vaccines. MMR and DPT vaccines probably *are* safe and effective, but the drive to find a vaccine for Lyme ASAP led to a perfect storm of problems, resulting in not just a potentially dangerous vaccine that was quickly pulled from the market, but testing and diagnostic criteria that exclude the majority of those actually infected, especially the sickest patients.

Weintraub also paints a picture of a nature that appears idyllic on the surface but actually harbors a hidden but terrifying danger. Which is true. Nature *is* terrifying and dangerous, and if we learn nothing else from the Lyme epidemic, I would hope that we learn that humans are not separate from the natural world, but deeply enmeshed in it, just like everyone and everything else (although I'm not holding my breath). Weintraub ends up by moving her family back to the safety of the concrete jungle of the city, safe from the sinister herds of deer she sees roaming the suburban paradises of New York and New England. Which is understandable--I certainly am no fan of playing in tall grass these days--but doesn't seem like a good long-term solution. As discussed in "Lyme: The First Epidemic of Climate Change," those sinister herds of deer may actually be diluting the Lyme epidemic more than spreading it, and the sterility and industrial pollution of the city can cause diseases every bit as terrible as Lyme, if not worse. In the end, we've slaughtered massive quantities of wild animals and invaded their territory, only to find that we've unleashed a threat even worse than the wolves and foxes we wiped out, and despite "sacrificing" large numbers of lab animals with the abandon and efficacy of Incans offering up their children for religious rituals, we're still sick.

We need a paradigm shift if we're going to get out of this alive. But in the meantime, reading "Cure Unknown" will be a good start to understanding how we got here.

[Sarazen · Rating 5 out of 5]

Many times in history good science has suffered attacks from the established order. Rarely have things gotten as bitter and brutal as they have been in the struggle to understand and treat Lyme disease.

As Weintraub points out via the insight of Jonas Salk, good science can only comes when one engages nature in a dialogue without preconceptions. In the case of Lyme, those we trusted as experts fell prey to biases so deep they failed to even acknowledge important discoveries that fell outside the boundaries of their set beliefs. Held with the deference we give to authorities, they have used their positions as bully pulpits, not to further good science or treatment but to try and force their interpretation of a new disease on everyone regardless of the costs to others. Hubris, stubborn denial of evidence supporting competing ideas, this story has it in spades.

Infused with the tragedy of once active and promising lives bought down by Lyme, the deepest sorrow has got to be in the realization that the last 40 years since the discovery of Lyme on US shores is that so much time and money has been wasted trying to bury the opposition rather than to try and understand the disease. In 40 years, how many could have been saved by accurate testing, or extended antibiotic therapy, or by having Lyme disease considered early and often as the root cause to other problems, or even just with the information that this disease is rife in the suburbs we thought of as 'safe'. We may never know.

This book needs to be read far and wide. Not just as warning of the dangers that lurk in our yards and parks and how profound and disabling the effects of Lyme disease can be, but also as a reminder that having authority even expertise in a field does not make one immune to cognitive dissonance, confirmation bias, self-interest, hubris, and even petty infighting. The choices of these 'experts' has shaped the face of healthcare for the worse, and as patients, doctors, scientists and parents we must demand better.

The title of this book may seem at first depressing. But in the end this book is a hopeful one, as it is the publication itself that will lead the way to change. Lyme disease, CFS, Lupus, Parkinson's disease, fibromyalgia, ALS, Alzheimer's we can follow the connections and see where the journey takes us whatever we discover. Let's not waste any more time.

[Dinah · Rating 4 out of 5]

This book must be the definitive book on Lyme Disease. Since our daughter was diagnosed over a year ago, it's been a steep learning curve. Weintraub, her husband and two sons were all infected. Despite her personal experiences, I felt Weintraub, as a professional science writer and an editor of Discover Magazine, went to some effort to be balanced in her reporting of what is a very politically controversial disease. In fact there is SO much information it's hard to get a handle on it. That's as much a function of the complexity of Borrelia as it is her writing, although I could have used some real basic explanations of Serology 101 and antibody testing. By the time I got to the end I sort of understood but I'd rather have understood sooner.

This book could be read by anyone interested in science and medicine and what gets in the way of good science. Rarely in recent memory have patients and medical establishment been as adversarial as they are in the Lyme debate. On one side are patients whose Lyme returns and returns and who seem to be helped by long courses of antibiotics and on the other by doctors who say that chronic Lyme doesn't exist, that it's an immune system response. Yet how to explain the thousands who say antibiotics have helped? The patient taking long term anti-biotics, sometimes intravenously, becomes a nice culture medium for a "super-bug" which physicians are justifiably alarmed about. Yet these folks are really suffering, in many cases fatally, and anti-biotics help!.

Only after reading Weintraub's book did I really understand the immune system issues and could understand why scientists are attracted to that explanation. It made me wonder if there is some other property of antbiotics (other than an ability to kill microbes) that ameliorates an immune response.

[Lisa · Rating 2 out of 5]

If you go out in the woods today, prepare for a big surprise. And it's not the Teddy Bears' Picnic, and it's not just the possibility of getting Lyme disease--it's the possibility that because of political-medical wrangling and vested or conflicting interests, as well as the mysterious nature of tick-borne infections, that you could be really sick for a really long time and be denied treatment that might work, or even be told that you're mentally ill, a malingerer, or an attention-seeker.

This book is a quasi-journalistic, quasi-anecdotal, quasi-investigative look at the Lyme epidemic over the course of a decade, from about 1997 until about 2008. The author is a science/medical journalist whose entire family became ill with Lyme disease after they moved to the idyllic countryside of Chautauqua, New York--which, as it happened, is a perfect place to contract Lyme disease. The author admits that her original manuscript was twice as long as the finished book, but the book would have benefited from even further revision and cutting. The book is an organizational nightmare, trying to combine the anecdotal evidence of several families and their journey through "the Lymelands" with the story of the development of medical criteria for the diagnosis and treatment of Lyme, a chronicle of the various approaches to the disease by different medical researchers and clinicians, along with their political infighting and conflicts (often at the expense of terribly ill patients), and the involvement of the CDC, NIH, state health departments, and the public health community as well as patient advocacy groups. It is often difficult to tell when certain events occurred in relation to each other, and so the reader is left wondering if people or their children suffered unnecessarily while someone somewhere was learning more about Lyme disease that could have helped them (probably so). A timeline of "what did they know and when did they know it" might have been helpful, along with more chronological guidance as the author moved from chapter to chapter. There are also some too-long passages describing the medical/biological details of disease processes and diagnostic tests.

This book is one of several that chronicle the outrageous stories of patients with "questioned diseases," such as AIDS (when that disease first appeared--see And the Band Played On, by Randy Shilts, the gold standard for this type of book), Lyme, chronic fatigue syndrome, and fibromyalgia. Many disease sufferers were abandoned by doctors who didn't know enough about the problems or were unwilling (or afraid, sometimes for good reason, as their treatment protocols were challenged by state medical boards)to deviate from professional standards to try to help their patients. Compounding the problem is a tendency for some practitioners and researchers to "frame" problems, limiting their thinking to their own area of specialty (such as rheumatology, in the case of early Lyme disease)--see Jerome Groopman's book, How Doctors Think, for more on "framing." And then some medical professionals decide that because they can't find a solution to the patient's medical problem, it must be a psychiatric problem (even though psychiatrists protest that they've never seen a psychiatric problem manifest itself in such an obviously medical way). The patient is left sick and sicker, with no hope and a label of "it's all in your head."

Fortunately there have been great advances in recognizing and treating AIDS and some advances in recognizing and treating fibromyalgia, chronic fatigue, and even Lyme disease, as the author indicates (at last)--but there's still much controversy and outrage concerning Lyme disease. The author unfortunately begins the book with a "this is outrageous" rant in the foreword (by Hillary Johnson, who wrote a similar book about chronic fatigue syndrome) and begins the book with her own outraged rant, which may cause some readers to decide the entire book is going to take that tone and give up--although the author gets down to a more objective, let-the-story-speak-for-itself tone in most of the book.

My take-away from Weintraub's long, convoluted story is that you can't necessarily trust that your doctor knows what he or she is talking about, that insurance companies will act at the expense of patients to limit their coverage (and thus the expense of treatment) even in the face of evidence and of patient suffering, that patients should do their own research and be strong advocates for their own care, although that's difficult to do when you're sick (and you may need the skills of a medical journalist and a lot of money to achieve results). Those things are probably all true, at least to some degree, but Weintraub could have made her points and told her story in about two thirds of the space, and benefited the reader by doing so. One important message of the book is that Lyme disease is usually more successfully treated in its early stages and that what we call "Lyme disease" can actually be a combination of more than one tick-borne disease needing different treatments over months or even years--something to remember should this potentially devastating illness shadow your life.

[Arminzerella · Rating 4 out of 5]

Pamela Weintraub has been writing for mainstream science publications for more than twenty-five years. She became interested in Lyme disease when she and her family were bitten and infected with Lyme after moving to a picturesque (but tick-infested) community on the East coast. The story of their struggle with Lyme disease – diagnosis, living with chronic illness, and their difficulty in finding doctors to treat them – is, unfortunately, not unique. This book follows the history of Lyme’s first appearance, the doctors who studied it, the patients who are and were afflicted with it, and the progress that’s been made to date in diagnosis, treatment, and vaccination. While some scientists have made startling discoveries that could eventually lead to an effective vaccine, and others have made enormous strides in tick-borne disease pathologies, the prevailing attitude of some of the largest and most respected medical institutions in the United States have failed to back these advances. Those with the most to lose are the patients whose disease goes untreated due to narrow definitions of what constitutes actual Lyme disease and delayed treatment. The ones with the loudest voices are, unfortunately, the doctors and research scientists and medical boards safely tucked away in their Lyme-free offices and laboratories – whose incentives are more often kickbacks from pharmaceutical and insurance companies. Lyme is a complicated and expensive disease and thus far, science is leaning toward treating it as if it were simple to understand, diagnose, and cure.

After reading this I’m reluctant to go outside because I *might* get bitten by a tick. And I might not notice. And then I might develop a Lyme rash (or I might not, because it’s not always something you notice or always present in cases of Lyme disease), and Lyme disease might follow. And if I don’t receive treatment right away, my symptoms might include searing bone, joint, and nerve pain, brain fogs, confusion, light sensitivity, exhaustion, hallucinations, memory loss, and more. My doctors will probably tell me that I have any number of other chronic illnesses (ALS, Alzheimer’s, chronic fatigue syndrome, fibromyalgia) and *not* Lyme disease. And even if I find someone who will diagnose Lyme disease, chances are s/he won’t prescribe a treatment that will cure me. Even if I start to improve, chances are I will relapse. If my physician *is* responsible and dares to go against the flow, chances are my insurance won’t cover the long term treatment needed to really kill off the spirochetes and their cysts. And it’s likely that the tick that bit me also infected me with other diseases (Babesiosis is often seen in conjunction with Lyme disease). I could be sick for years. And my doctors will likely give up on me. And I will die. Because the prevailing attitude is that it’s better to make money or save money than it is to save lives. And that is incredibly frustrating. I don’t think that people *truly * understand what it’s like to be chronically ill and to have your health dangled in front of you like a carrot – just out of reach – while the medical experts (the ones who are supposed to know these things and use them to make you better) tell you that your illness is ALL IN YOUR HEAD. I’d want those pompous, self-serving doctors and researchers to come down with Lyme disease themselves and experience FIRST HAND the hoops they’ve created for Lyme patients to jump through. Cure Unknown will inform and enrage you, and hopefully it’s the kick in the pants that the medical community needs to start serving the needs of their patients.

[Jen · Rating 5 out of 5]

Weintraub is a senior editor at Discover Magazine, and she, her husband, and both of her children went through years of misdiagnosed lyme, followed by years of treatments with varying success. Her book reviews everything about lyme — the history, the studies, everything. It’s got all the interviews in it and all the literature in it that I wish I had time to read. Despite her experiences, which do color the book, the literature review in the book comes across to me as complete and relatively unbiased. It was the first book that adequately explained to me how an auto-immune disorder might result from lyme, while also reviewing what I see as conclusive evidence that lyme may also persist past 6 weeks of antibiotic treatment. It does not attempt to tell the reader how they should heal their own lyme, but it does describe one family’s path to healing. It is a political book, a science book, and a deeply engaging story of despair and hope. Perhaps the only flaw in this book, in my mind, is the fact that it spends almost no space on the possible role of alternative treatments in healing: she does she interview practitioners of alternative treatments, or literature about them, and only briefly mentions them. Despite that, I highly recommend this book to anyone touched by lyme, or simply interested in a disease that has spawned a society of people and doctors defined by the fact that mainstream medicine has rejected the possibility or appropriateness of their existence, driven by tragedy, and enabled by the Internet.

[Lee Shaver · Rating 3 out of 5]

Thorough and well-researched with engaging anecdotes -- however the organization is all over the place, and going too deep into some pretty speculative connections reduces the credibility. However conspiracy theories are kept to a minimum (and in some cases, their absurdity is acknowledged), which is a refreshing change on this topic.

[Rick · Rating 5 out of 5]

When I received my copy of Pamela Weintraub’s new book, Cure Unknown: Inside the Lyme Disease Epidemic, I was eager to read it and found it difficult to put down. However, it was more than my own personal experience with tick-borne illness that piqued my interest.

I longed to read how Pamela Weintraub, a competent science journalist who had deeply personal experiences with Lyme disease, would tell the complex story of Lyme disease. To me, this story is one that has been crying to be told and Pamela Weintraub is perfectly poised to tell it.

At first, I was reminded of Polly Murray and her superb 1996 book about the early years of Lyme disease, The Widening Circle: A Lyme Disease Pioneer Tells Her Story (St. Martin’s Press). Weintraub picks up the trail with stories of herself and other mothers who are struggling to find explanations for the unusual medical problems in their families that baffled every doctor they met. Today, we know much more about the pathogens transmitted by the bite of a tiny deer tick than we did over thirty years ago. Sadly, we are still reading about mothers in dogged pursuit of the same answers.

The horrific treatment by medical professionals toward sick children described in Cure Unknown is cruel, incomprehensible and devastating. The indiscriminate determination of who actually has Lyme disease and who doesn’t is just one example. A patient in Weintraub's book goes to several doctors who repeatedly determine that he definitely does not have Lyme disease. A few years later a test shows him to be unequivocally positive. Nevertheless, when the patient fails to improve after a few months of antibiotic treatment, he is deemed to no longer have Lyme disease, is refused further treatment and is told his problem must be psychiatric. Real doctors behave this way and they do not need a rational explanation to justify their actions. This is Lyme disease and if you ever thought it was the disease du jour you are in for a rude awakening.

What sets Cure Unknown apart and makes it so compelling to read is how patient histories are told in the context of an unfolding and fractious divide within the medical and scientific research communities. Readers will learn about patients who are largely ignored by the mainstream medical community with a disdain, derision and passion rarely seen with other illnesses. Weintraub’s deft use of wry humor allowed for such distasteful behavior to be a bit easier to swallow. Her exhaustive research, interviews, and knack for explaining complex scientific information combined to keep me engaged and eager to finish the book. Seasoned veterans of Lyme battles of their own will also find bits and pieces here that they will learn about for the first time.

I had to wonder, in the end, how many Lyme patients experience the same tragic challenges as those profiled in this book. We may never know the answer. That’s because there is still no gold-standard test to distinguish patients with Lyme disease from those without Lyme disease. This kind of research, oddly, has not entirely been the focus of the research community since Lyme was first discovered over thirty years ago and Weintraub illuminates this conundrum quite well. Her book should alter the landscape upon which the tiny deer tick thrives and the Lyme patient wanders in a solitary search for answers.

[Mike Blyth · Rating 5 out of 5]

I'm a pediatrician and I came to this book as a skeptic. There is so much anti-science and pseudo-science around and I thought that blaming all manner of ills on this infectious disease was probably another example. After all, weren't the CDC and IDSA the highest authorities on the issue?

I read the book partly because I'm interested in the question of how people in general decide what to believe about controversial issues, especially in health. Why do people believe the CDC, their friend, their doctor, a book, or an Internet post, when the authorities present conflicting information? Clearly, the experts know more about Lyme disease, say, than the average person. When the experts disagree, what basis does the lay person have for choosing between them? How can you judge the evidence and logic of the experts without understanding even more than they do?

This book is an excellent example of a skilled person actually trying to understand more than the experts, if not in depth then in breadth. The author works not only from many individual stories (common in pseudo-science) but also with much scientific and technical information. Judging from the hundreds of references at the end of the book, much of this evidence is drawn from mainstream, peer-reviewed journals.

Weintraub argues persuasively that the establishment views of Lyme disease, the ideas and guidelines formulated by the CDC and IDSA, have been distorted by several factors. These include academic politics, financial interests, turf wars, the complexity of the disease, and hardening of attitudes caused by the "Lyme war" itself (the author notes early in the book the unusual degree of personalization in this conflict, with leaders from all sides being demonized as mentally ill or evil).

Having read the book, I am still a skeptic but now a bit skeptical of the objectivity and authority of the establishment. It's hard for me to imagine that there are masses of people with debilitating symptoms of chronic Lyme disease, denied valid treatment because of the intransigence of the medical establishment (and insurance companies). However, unless Weintraub is lying--and I'm sure she is not--the evidence is too strong dismiss out of hand.

My only caveat is that the book is one-sided. Though it deals with some of the mainstream arguments (such as the claim that a short course of antibiotics will kill almost all the Lyme organisms), it does not give any space to an establishment refutation of the "Lyme movement" views. Before making up my mind on the issue, I would certainly want to read a good response from the IDSA, answering point-by-point the issues brought up in the book. I doubt such a response would clear the air, but it would be just as unreasonable to ignore their response as to ignore this book itself.

[Ry Kings · Rating 5 out of 5]

Before reading this book I already knew from word of mouth that it was the "definitive book about Lyme disease".

As both an excellent writer/researcher and someone who's experienced the disease, Pamela was the ideal candidate for creating the definitive book whether she knew it or not. If it didn't excel in all other areas, I would have rated it a 4 for the way it's laid out. I assume she created very short chapters for those of us with Lyme, which I appreciated, but the way she stirred up the contents of each individual story and then scattered them throughout the book made it very hard for me to follow her train of thought. I understand why it's laid out like this, and it makes the book even more compelling, but we "Lymies" can't follow a train of thought from one sentence ago, let alone 20 pages earlier in the book. I resorted to constantly reviewing earlier parts of the book because of this - a minor complaint, but one that others with Lyme might share.

I enjoyed her skepticism of both sides of the story, and her admission that the treatment process is vague, individualized and sometimes as scientific as a shot in the dark. My treatment so far parallels her description of the unpredictable path of the disease, as if it was a roller coaster ride with 1000 tracks, some uneventful and some extreme, and each morning the disease decided which track to take. Your treatment plan can keep you in the cart, but you're going down the track whether you like it or not.

I know people who are "cured" and people who aren't, people who know of the disease and those who've never even heard of it, but right now it's still "underground" and always will be until Lyme patients stop getting statistically sucked into the vortex of socially accepted diseases like MS, Parkinson's, Alzheimer's, ALS, CFS (ME), Fibromyalgia, etc. - all of which have no explanation for their sudden onset. Until the financial incentive to improve and endorse antibiotic or herbal (which don't fit into the modern medical paradigm at all) therapies trumps the incentives of modern, patentable immunosuppressant and "lifestyle disease" drugs, the paradigm will not shift in favour of the Lyme patients who need help now, or for those who are sadly afflicted by another chronic disease - chronic misdiagnosis.

[Paige · Rating 4 out of 5]

Fascinating and disturbing true story of a controversial medical epidemic. The author is a science reporter (now editor of "Discover" magazine) whose family all contracted Lyme, and then faced many obstacles in getting treatment. Unfortunately, their story is typical of many patients with late, chronic Lyme who get caught in the "Lyme wars".

Here is a description from The Seattle Public Library Catalog:

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.

[Patrice · Rating 5 out of 5]

Well this book was enlightening. Usually when I think about politicized science, I think global warming, but now I believe Lyme eclipses that. The people making the decisions about Lyme have considerable monetary connections to insurance companies, who have powerful motivation to deny expensive treatment, and deep personal and professional investments in developing a Lyme vaccine, the rushing of which through the FDA approval process has been more influential in Lyme research than the scientific method. Some of the research methods used wouldn't fly at a middle school science fair, but are the basis of denying care for a horrific disease. As powerful as pride is in blinding people, smart people can't be THAT dumb, so I lean towards corrupt. Changing the criteria for infection until you're right and you're opponent is wrong or lowering the bar for successful treatment to cover the "major" symptoms of rash swelling, while leaving the "minor" symptoms of intense pain, crippling exhaustion and degenerative brain disease are just not good science. Also systematically destroying the careers of any colleagues who disagree with you is a tad suspect. If, without any psychiatric training at all, a doctor feels comfortable telling his patients that they are lying, mentally unstable and wimpy and to take a hike because s/he can't diagnose their illness after eliminating the one it is poltically not allowed to be then s/he probably picked the wrong profession. This one is right up there with London health officials in the mid 19th century, completely convinced that smelly miasma caused disease, decided to save people from Cholera by dumping all the city's raw sewage into the drinking water. Since I don't have powerful connections in the medical community (which now appears to be the only way to get treatment out of a lifetime of excruciating suffering), I think I will avoid nature as much as possible to minimize my exposure.

[Kimberly Hock · Rating 5 out of 5]

Informative yet frightening!

Reading this book has been an emotional.journey. Anyone watching me thought I was reading a fictional sappy love story. The information regarding the science and politics involved is the best I have ever read. Me and my husband lived and owned 105 acres in Oklahoma in the late '90's where I believe I contracted Lyme. Every time we walked thru the heavily wooded acreage we would come home and pick the tiny deer ticks off. Your jeans would be covered in them. We returned to Texas in 2000. I have been tested with every antibiotic you can think.of for every disease but Lyme. Have only been tested once in the ELIsA and failed. Have been told because of that year there is no way I have Lyme although my health deteriorates and my life has been changed forever. Not able to work because of illness and unable to get diagnosed I live day to day not knowing if I will have money to eat or a warm bed to sleep in and to make matters worse electronic medical files follow you everywhere and she to two suicide attempts just alert doctors to ignore medical symptoms because I am crazy. Crazy can stop you from receiving medical care but by God you can buy a gun, take a four hour class, and carry it on you just about anywhere in Texas. I sometimes wonder if we should test all these active shooters for Lyme. My family has decided to put 20. 00 a month in savings every month that I do so I can see a Lyme literate doctor eventually. I just may not be alive by then since the average cost is about 2000.00 and the closest doctor is 200 miles away but they are praying for me. I just wish one of them would take the time to read this book or any information on Lyme disease or at least watch Under Our Skin but because of the CDC and IDSA they believe you can only get Lyme up in New England and they don't understand why I can't get help with their doctor or at the local ER.

[Emily Kestrel · Rating 3 out of 5]

Pamela Weintraub's family moved from New York City to the bucolic countryside upstate, buying a house on a wooded lot. Eventually the whole family became sick with a mysterious but devastating ailment, the symptoms of which included overwhelming fatigue and brain fog and chronic pain. After spending too long trying to get a diagnosis, she became convinced that they were suffering from chronic Lyme disease, requiring lengthy bouts of intravenous antibiotic treatment, which her insurance balked at paying for. She then hooked up with other chronic Lyme sufferers and the few rebel doctors willing to take them on. Other chapters discuss the history of Lyme, the attempt at getting a vaccine for it, and the changes to the natural environment that encourage the spread of ticks.

It's a lot for one book to tackle, and she does a decent job of it, but it's uneven. Parts of the book were excellent, and I did learn a lot. Other sections seemed to belong in a different sort of book. I felt like when she got into the chronic Lyme stuff, because of her understandable desperation to feel well again, she comes across as much too credulous. I am NOT saying that the Weintraubs and others weren't really, truly sick, or that they didn't deserve every remedy possible to make them better. But there is a big difference between alleging, "You are not sick" to stating, "I don't quite buy the whole chronic Lyme hoopla and suspect it's really something else."

For the opposite side of the story, I would recommend Paul Offit's "Do You Believe in Magic?" I actually didn't like that book because I felt it was too snarky and one-sided, but the chapter on "Lyme literate doctors" is a good companion to this book.

[Joey · Rating 5 out of 5]

This book is to lyme disease what Osler's Web is to CFS, and yes the two diseases not only share physical similarities but are historically interwoven like fornicating worms. If you don't have lyme disease or haven't heard of it, it'll read kooky, cultish, and conspiratorial. If you have had any personal experience with lyme disease, you might catch yourself wishing this were an elaborately-contrived conspiracy to stave off the sobering realization that lyme patients never stood a chance.

Pamela Weintrub is a meticulous scientific journalist who leaves no big name un-interviewed on either side of the polarizing lyme debate and no stone unturned to give an evidence-based lashing of big pharma, academic medicine, gov't research, and managed care: the Big Four responsible for spinning and stifling unbiased research results to keep patents alive, pockets full, and egos way up high.

Lyme disease sufferers should not add this book to their arsenal of treatment books because incredulously, all the patients in this book had amazing results with monotherapy--antibiotics alone. No no, readers shouldn't read this book for any kind of therapy--including hope. Cure Unknown is the truth and nothing but the truth: The Bible of How We Got Shat On. But for the policy wonks out, this book is 20 years of pressing evidence that our healthcare system is equal parts egomaniacal and inefficient. Let's read and weep (I did twice)...and change.

[Eileen · Rating 4 out of 5]

This was slow going, but an important book. The author makes a compelling argument for a skewed manner of defining, diagnosing and treating a disease because of academia egos, poorly conducted experiments, inexcusably wrong experiment results interpretation, managed care manipulation, politics, and gross ethical violations by policy setters who have a personal financial interest because of their connection to pharmaceuticals and/or their own potential patent opportunities or self interest.

Weintraub paints a picture of a complex bacterium that has the ability to elude antibiotics and other drugs and morph into other forms in other parts of the body, including the brain. When untreated or improperly diagnosed this disease has serious, long-term, often deadly results.

This is a story about people whose lives have been turned upside down by this insidious bacterium. This is a story about physicians whose lives and practices have been shattered by virtue of their treating and curing their patients, by the institutionalized entities we expect to protect us.

This is an important story whose last chapter has not been written. A sad, sad commentary about how a disease is defined and treated.

[Lizzie · Rating 5 out of 5]

Clear, concise and chilling this is the definitive book on Lyme disease.
It highlights the political machinations that resulted in half-assed guidelines and treatment protocols. It staggers the imagination how deliberately obtuse the medical field,in general, remains about this epidemic.
It highlights what happens when politics and health are married to money and patents.
It shows the disdain of academia for the doctors in the trenches with real patients with real issues.
It is criminal that the treatment of clinical cases of Lyme have to be begged for by patients and that is if they are "lucky enough" to have gotten the classic "bulls-eye" rash. At least the CDC proclaims that as diagnostic. Unless, of course, you live in Missouri for some reason.
Lyme remains a political and medical pariah, misunderstood, under-diagnosed, under-treated.
Though there are researchers working hard, for every revelation they have, another Dr. who treated Lyme has been hounded out of practice.
There is no conclusion, no happy ending and no cure for far too many.
If 20% of patients treated for strep throat never got well, wouldn't there be an uproar? Why is Lyme such a pariah? This book explores the reasons and does so with solid research by a well-respected science reporter.

[Lucy Wightman · Rating 5 out of 5]

Cure Unknown: Inside the Lyme Epidemic
Pamela Weintraub


If you want to immerse yourself in the knowledge gathered thus far on Lyme disease, the pages of Cure Unknown by Pamela Weintraub will more than satisfy. It was richly informative, historically comprehensive and paced by vignettes written about families and individuals whose lives stopped on account of the corkscrew bacteria called, “spirochetes,” (rhymes with parakeets).

Weintraub, a long-time journalist and Executive Editor of Discover Magazine, produced an up to date, encyclopedic volume leaving few stones, if any, unturned. Weintraub comfortably detailed the medical community’s divide, political confusion, microbiology and the extreme effects of lax research in ways that kept me captivated.

Weintraub and her family walked the Lyme timeline and fell through several cracks split wide open by managed care, the “practice” of medicine and the tense arrogance of an ethically compromised scientific inquiry that continues to this day.

The overriding conclusion is, as the title implies, that there is not yet an absolute cure for vector borne diseases.

Most of us don’t know what ticks can do to us. If you, or I, find out firsthand, we lose the skills needed to articulate the experience.

[Kat Shelton]

Book Jacket:
'Why are all these people so desperately sick?'

When Pamela Weintraub and her husband moved their family
to idyllic, pastoral Chappaqua, New York, in the early
1990s, they thought they were doing the best thing for
their two young sons: open space, fresh air, lawns and
woods to play in. When all four family members began to
feel unwell, they ascribed their vague headaches, joint
pains, and weariness to the normal wear and tear of busy
suburban life. But as years passed, their symptoms mul-
tiplied and intensified, burgeoning into gross signs of
disease: swollen knees, limbs that buzzed as though wired
to a power grid, mood swings, extreme fatigue, and disa-
bling pain. Eventually their oldest son, Jason, tested
positive for Lyme disease, and Weintraub, a science
journalist, thought she had found the answer for all of
them--but her nightmare had just begun.

As with her quest for a diagnosis, almost everything about
Lyme disease turned out to be controversial. From the mi-
crobe causing the infection and the definition of the dis-
ease, to the length and type of treatment and the kind of
practitioner needed, Lyme is a hotbed of contention.

[Susan Anders · Rating 5 out of 5]

While this book had some extremely technical information (hard for us Lyme brains to comprehend), it was very informative as to why there is such a strong division between mainstream doctors and those that treat Lyme. It is unfathomable that in today's world, Lyme patients have to jump through so many hoops to get the proper treatment. Although this book was written almost 10 years ago, not much has changed. Lyme literate doctors are still being targeted and patients are having a hard time getting treatment, yet alone someone to believe that they have a disease that is epidemic in the US and other countries or to get some doctors to even test for it. We are like the AIDS patients of the 70s. One day, the government will realize that they can no longer sweep this under the rug and tweak studies to suit their needs. This was very well written by a woman that is not only an exceptional scientific journalist, but she knows firsthand how the system needs to change because her entire family has Lyme and many co-infections. Interesting read, whether you have Lyme or not. It is very eye-opening!

[Laura · Rating 4 out of 5]

When I got an equivocal Lyme diagnosis, a friend who had gone through something similar recommended this book to me. I would in turn recommend it to anyone who wants to understand the complicated and controversial status of Lyme disease as a medical condition. Weintraub has thoroughly researched the literature and compiled it into a history of the disease, interspersed with the narratives of her own family and others' specific stories of battling the denial of mainstream medicine in order to receive treatment. The human stories make it highly readable, but I often found them distracting and I found myself skimming them to get back to the medical history narrative -- but then, my main reason for reading was to find answers and explanations, not for compelling human stories. Clearly Weintraub has done her research and her experience as a science writer shows clearly, however it is hard believe she is not biased by her own family's experience. I'm not sure whether that is actually a positive or a negative in this case. If nothing else, this is a solid launch point for further reading.

[Jody · Rating 5 out of 5]

The definitive guide and rallying cry that leads us through the labyrinth that is "Lyme disease". A must read for anyone who steps outside, let alone the sufferers who are made disposable by the current IDSA guidelines. The author, Pamela Weintraub, was a respected science journalist long before she herself got bit by a Lyme- infected tick. Just as "Under Our Skin" is a must see documentary on Lyme, this is the 'must read' book on Lyme. Both a searing scientific investigation as well as haunting portrayal of what it means to live in a world where 'the hot zone' is right outside our front doors. *Coincidentally, this is also the day when a ground breaking petition is out to redefine the archaic and inadequate treatment protocol. Please sign. http://www.lymedisease.org/petitionsc...

[Julie · Rating 4 out of 5]

I loved the beginning of the book and how it captures the story of a Lyme patient who has to deal with the horrors of this disease. It helps me visualize the seriousness of this illness. I worked with Dr. Wormer at the New York Medical College with his Lyme research. During the summer all the new Lyme patients would come in and I was responsible for checking them in and managing all the paper work and blood collections. I was there in November 2006 when Dr. Wormser's research facilities were picketed. At the time I was so young (right out of college) so I didn't realize what the protest was about. Dr. Wormser is one of the most kindest and ethical doctors I've ever worked with. It was heartbreaking to read about the stories of the Lyme patients while at the same time knowing first hand about Lyme research. I hope one day that both sides find a resolution that helps everyone affected.

[Chris · Rating 3 out of 5]

This is a very in-depth look into the world of Lyme. If you're looking at this from a perspective of a person who has never experienced Lyme disease, then this is perfect because it explains all the aspects of the disease that are plotically hidden from the general public. As a person who has been diagnosed with Lyme, I did not derive much new knowledge about the politics, failure of the medical community to effectively diagnose or treat the disease, or the horrors of dealing with long-term symptoms of Lyme. Weintraub provides the readers with a lot of information for those not inflicted by the disease, but the book leaves a lot left to be desired as far as where those suffering from Lyme and what steps they can take to take better control of an unfortunate medical disposition.

[Scott Schneider · Rating 3 out of 5]

This is a scary book. It has made me a bit paranoid about getting chronic Lyme disease. I wish though that the author had put it a bit in perspective. What percentage of Lyme victims get cured with a short course of antibiotics? What percent develop chronic Lyme? I also wish I had an update on what has happened over the past 8 years since it was published? The book focuses on a number of different victims and their fights with the medical establishment. It is horrific. It shows clearly how the establishment resists change and has vested interests in doing so and does not have the patient's interests at heart. But the book gets into too much detail about all the theories and infighting. It (ahem) gets too much into the weeds.

[IreneS · Rating 4 out of 5]

this was a quick, if difficult read... Weintraub posed more questions then answers, I think, but she's not a scientist and did shed so much light onto this debilitating disease.

I'm still unclear as to why her entire family was targeted by this disease to such a degree. She mentions targeted DNA in one chapter but does not elaborate (or doesnt have the scientific info to go into more detail.. again, not her field and I don't fault her).

I was especially interested in the ALS/Lyme portion of the book, it's not one I've read about in the past

(I've had about four bouts of lyme, all caught early... I'm very fortunate. My doctors took my issues seriously and treated me with respect)

[Meg · Rating 5 out of 5]

A history of uncovering/investigating Lyme Disease since the 1990's, written by someone who knows what she's talking about because she and her family went through it and because she has extensive experience in science journalism. It is appalling to read about the fighting that has gone on among scientists and researchers while many of them have completely discounted the critically ill people that their work was supposed to help. Luckily many of them did step up and work to gain an understanding of the causes and effects of Lyme and the coinfections that often accompany it and to continue to find cures for it. There is still much to be done...

[Beth · Rating 3 out of 5]

Scathing indictment of the "establishment" thinking on the diagnoses and cures of Lyme disease. It is a baffling disease with irregularly occuring symptoms, as is made clear by the author, but some scientists, doctors and corporations continue to deny the substantial evidence that the official CDC diagnostic criteria are too exclusive, and long-term illness is treatable primarily with long-term (often more than a year) antibiotic treatment.

Disclosure: My husband and several friends and acquantainces of mine have long-term Lyme disease.

[Teresa · Rating 5 out of 5]

Wow. After being diagnosed with advanced chronic Lyme almost a decade ago, I thought I'd learned a lot about it. Wrong!

Weintraub deftly sifts through the hype/hysteria on both sides to present the factual data on nearly all aspects of the horror that is chronic Lyme, all the while interjecting it with personal tales of the challanges her own (and entire) family faced in trying to get well.

There is an extensive "notes and references" in the back of this book that in itself make it worth the purchase price. My copy came from our library, but I'll be buying a copy of my own!