Cure Unknown: Inside the Lyme Epidemic

 
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A groundbreaking and controversial narrative investigation into the science, history, medical politics, and patient experience of Lyme disease told by a science journalist whose entire family contracted the disease.
Pamela Weintraub paints a nuanced picture of the intense controversy and crippling uncertainty surrounding Lyme disease and sheds light on one of the angriest medical disputes raging today. She also reveals her personal odyssey through the land of Lyme after she, her husband and their two sons became seriously ill with the disease beginning in the 1990s.
From the microbe causing the infection and the definition of the disease, to the length and type of treatment and the kind of practitioner needed, Lyme is a hotbed of contention. With a CDC-estimated 200,000-plus new cases of Lyme disease a year, it has surpassed both AIDS and TB as the fastest-spreading infectious disease in the U.S. Yet alarmingly, in many cases, because the disease often eludes blood tests and not all patients exhibit the classic "bulls-eye" rash and swollen joints, doctors are woefully unable or unwilling to diagnose Lyme. When that happens, once-treatable infections become chronic, inexorably disseminating to cause disabling conditions that may never be cured.
Weintraub reveals why the Lyme epidemic has been allowed to explode, why patients are dismissed, and what can be done to raise awareness in the medical community and find a cure. The most comprehensive book ever written about the past, present and future of Lyme disease, this exposes the ticking clock of a raging epidemic.

Customer Reviews:

  • Incomparable - if you read one book on Lyme Disease this should be it!
    My title pretty much say's it all. Ms Weintraub's book is the yardstick by which all others can be measured.

    I have probably read nearly a dozen books about Lyme Disease (I have had it for over a decade) and some were good and some were bad the Cure Unknown is the best.

    Sadly it it offers a lot of sadness as well as some hope. It bravely attempts so draw a bright line in the sand between the past and the hope for the future.

    I can only hope Ms Weintraub will some day write a follow up title "How we found the cure".

    Thanks...more info
  • Wonderful
    This was the first Lyme book we read after my husband was diagnosed with late-stage Lyme 1 year ago. A very interesting, thorough book! By reading this, you will understand that anyone, anywhere, can get this horrible disease....more info
  • The best non-fiction book of the year!
    Pamela Weintraub's book about Lyme disease is a well written page turner. It is a must-read book for anyone interested in learning more about Lyme disease....more info
  • CURE UNKNOWN
    I highly highly recommend this book. After reading this book I now understand how Lyme disease has become so political. I am greatfull to the author for bringing attention to these issues. Hopefully this book will break down some of the walls around Lyme disease and make it easier for patients to get diagnosed and find proper treatment. ...more info
  • No alternative medicine
    This is a wonderful book, especially for those who don't want to leave the world of allopathic medicine. Her writing is excellent and it clearly lays out the problems of our medical system when confronting a new epidemic like lyme. Because this is so strictly allopathic, it is a good resource for doctors, and I wish every single one of them would read it!

    The hidden weaknesses, in my mind after spending 3 years in the world of lyme recovery, are that there is no mention of the Bowen Q-ribb, the very best diagnostic tool of all for lyme; nor are there mentions of some of the amazingly successful herbal/nutritional protocols - namely Buhner's herbs and the lymestrategies salt/c protocol, which is what caused my recovery.

    When the doctors fail you, you can either continue to fight for access to antibiotics that may be having unsatisfactory results anyways, or give up on MD's altogether and go the alternative route, where many are finding their way to health by learning to read their own bodies instead of listening to "experts". This book in no way tells that story, but it is a growing movement....more info
  • Very well done book.
    This book is very well written and explains Lyme from its discovery to its presnet state of debate over treatment protocols. The information is presented in a intersting way so you can get this important data without getting bogged down in things that are irrelevant. As other reviewers have pointed out it does not list Alternative or adjuncitive treatments to antibiotics so any reader would have to seach elsewhere for this data. With that said "Cure Unknown" is an appropriate title for this book. ...more info
  • Enlightening Book...
    Very impressed with the book. Well researched, and I find it comforting to know that the woman who wrote the book is a science journalist with years of experience, especially since I am not a scientist. Because of that fact, I have to put a certain amount of faith in a writer's work and technique. There is an extensive bibliography in the back of the book, a bonus for any details one cares to research on their own. I was very sad when the book ended--- I just wanted to keep reading! I feel like I have a much better handle on the subject now, as well as being informed of current research. Thanks Pamela!...more info
  • Fills a need in Lyme literature bookshelf
    Having written four books on Lyme disease myself, I was skeptical about this book -- do we really need *another* Lyme disease book? As Lyme books flood the market, I think many are asking this question.

    However, after reading this book, I can say that it is a valuable and unique book. I think the best accomplishment of the book is to neatly and thoroughly tie together the current state of affairs in the "Lyme world." Many books have bits and pieces of the current situation, but this book captures the snapshot of Lyme politics, treatment, research, and advocacy, in a clean, entertaining, and well-written fashion.

    Additionally, I think the book will be very useful to the "masses" - both the public and the thousands of conventional physicians practicing "non-Lyme literate" medicine. For the public, this book has been written and presented accurately and professionally and will offer a much needed wake up call and education on Lyme disease, even for the beginner. For the physicians, the book will allow them to "get their feet wet" in the Lyme world without resorting to more fringe, less accepted books and writings.

    The one area where the book is lacking is broad coverage of treatment options and alternative therapies, but this is an acceptable limitation, since that is not why this book was written. For treatment information, both conventional and alternative, I suggest reading the other books available on the topic, including the four I have written, and, for example, the excellent co-infection books penned by James Schaller, M.D. (covering Babesiosis and Bartonella infections).

    Still, even with limited coverage of treatments, the book yet presents some quite fascinating and novel information on a few advanced treatment strategies, one of which was used to heal both the author of the book and one of the most prominent Lyme-literate doctors in the country (this particular treatment, which uses pulsed application of the cephalosporin antibiotic Ceftin, is discussed in Chapter 44, titled "How I Cured My Own Lyme Disease").

    Yes, after more than a dozen Lyme books released in the last year or two, this book is worth the paper, and should be read by anyone affected by tick-borne disease.

    Bryan Rosner
    Author, "The Top 10 Lyme Disease Treatments"
    Website: LymeBook Dot Com...more info
  • Best Book On Lyme and Controversy
    By far the best and most comprehensive book ever written on lyme disease and the intense controversy surrounding it. There are a lot of books being written about lyme disease and as a lyme patient going on 8 years, I must warn other lyme patients, especially new patients, to be careful what you read. I highly recommend CURE UNKNOWN. Its all you need to know written in a way that takes away the mass confusion one steps into when diagnosed with lyme. I have the highest respect for her courageous investigative journalism and for her tenacity to write this book while being treated for lyme and also dealing with her two sons lyme disease and her husbands lyme disease! Talk about a nightmare situation, but it is becoming more and more common for entire family's to have lyme disease! CURE UNKNOWN is the SOS I have been hoping for! PW and Cure Unknown is a GOD SEND! ...more info
  • A masterpiece of medical journalism.
    This book is a masterpiece that not only unravels the confusing history of the raging medical debate about chronic Lyme disease, but successfully tracks ongoing research to better understand the disease and ultimately find a cure.

    If you suffer with Lyme disease, be prepared for a very frustrating project as you try to follow the chapters that jump from story, to story, to interview and back again. Important dates are hard to remember and research chapters packed so full of critical facts that you will need a highlighter and notepad to digest all the information.

    I found it extremely difficult to read not only because of the format but also because of the information. No matter how many times I re-read a chapter, for the most part I couldn't help but want each to end differently, like watching "Gone With The Wind" and hoping Rhett won't walk away at the end.

    The current situation and meticulously documented facts are frustrating indeed, however, your determination to read the entire book will be rewarded as mine was, with the precious gift of understanding.

    We who have Lyme disease are the victims. We suffer daily with the tragedy of how Lyme disease is treated by mainstream medicine. We suffer the humiliation of being told a disease doesn't exist in spite of the fact that it is medically proven with reams of documentation from top scientists. We suffer with the unbearable financial burden. We suffer the loss of friends. We suffer the loss of our lives (as we knew them), and unfortunately our story can't be re-written.

    We are suspended in the fog of our disease along with the bigger fog of medical deception while doctors under-treat if they treat at all, and certain highly placed medical doctors "fix" tests to prove their theories instead of searching for solutions.

    This state of affairs would be dreadful with any disease but for the raging epidemic that faces our nation today with Lyme disease, it is a crime beyond belief.

    And yet the author does provide hope.

    There is hope for a political change with Connecticut's Attorney General investigating the conflict of interest for the authors of the current IDSA's guidelines (Infectious Disease Society of America) for diagnosis and treatment of Lyme disease.

    There is also hope for the medical community to redeem itself with the advent of new technologies and technicians.

    For instance, a new team of top researchers currently gather under the leadership of infectious disease specialist Dr. Benjamin Luft (Stony Brook University) to methodically sequence every gene in every strain of B. burgdorferi which will allow diagnosticians to test for over 1800 possible proteins instead of the ten limited proteins as is now done with the western blot.

    The Luft team is also testing a new antibiotic "Tigecycline" which kills spirochetes fast, possibly eliminating the need for such long courses of antibiotics.

    An exciting hope for a new vaccine is being developed by Eugene Davidson, a molecular biologist who has shattered spirochetes using ultrasound and begun trials injecting the tiny pieces (non-infectious on their own) into laboratory animals, and thus far producing total immunity.

    I plan to follow these developments very closely on my blog at [...] and desperately hope that meaningful answers will come before it is too late for me and others like me. Smiling at my grandson, I am confident that they will come in time to protect him.
    ...more info
  • Cure Unknown
    This was an excellent book. I have recently met the author of the book and it was great to hear about her families struggle with Lyme disease in the book as well as in person. I could tell she spent a lot of time researching her subject. I hope a lot of people read this book so they can find out about this terrible disease and how it is affecting so many families. We need to spend more money on research and training for our doctors. ...more info
  • Solid and Hard Hitting
    Pamela Weintraub has done an incredible job sifting through massive amounts of often conflicting information to deliver a readable and engaging synthesis of Lyme Disease in America. While there are a number of books on the subject Cure Unkown represents a balanced, factual account of the controversy surrounding this misunderstood disease. Ms. Weintraub has woven her analytical tour de force with the moving account of her family's journey through the dark, Kafkaesque landscape of today's medical establishment. This is a must read for anyone interested in better understanding Lyme Disease....more info
  • Fascinating Read
    This is a must read for anyone with Lyme Disease or caring for someone with Lyme Disease.

    It should be read by every doctor in USA, UK and throughout the world.

    With all the research articles it details, how can IDSA get away with their doctrine that it is so easy to Cure.

    ...more info
  • A must read
    I have read at least 5 other Lyme related books, while each of them has their merit, Cure Unknown Cure Unknown: Inside the Lyme Epidemic contains unbiased views of our current struggle with the CDC and finding a cure for this ravinging disease. For those of us affected by Lyme, it is insightful, caring, empathtic and powerful. I think every medical doctor should be required to read this. I think the CDC needs to read this. My hats off to the author, she could have lost her temper so many times throughout the writing of this book, but it never shows. I know I'm angry about this and how it has affected my life. Anyhow, I highly recommend this book for everyone, even those who have not been exposed to this disease - Lyme...more info
  • A tragedy
    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.
    ...more info
  • It's about time!
    I am so grateful to Pam Weintraub for taking the time and energy to write this provocative, disturbing and informative book. I only hope that it catches the eyes of those who can help find an answer to the Lyme nightmare. Whatever anyone can do to get the word out is good. I think it's our only hope....more info
  • Historically compelling but practically skewed
    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....more info
  • A Must Read
    "Cure Unknown" is a must read for those with Lyme disease, those diagnosed with CFS, FMS,MS and many other "mystery" illnesses. If your doctor says, "It is all in your head","There is no such thing as Chronic Lyme", please read this book. If you wonder why the medical profession and insurance companies want to pretend Lyme disease does not exist, read this book. Pamela Weintraub tells the real story behind Lyme disease and gives real hope to sufferers and those who care. ...more info
  • The ammunition you need to fight for treatment
    I am currently fighting Lyme after three years undiagnosed. My symptoms were real and the science is real. The author recounts family experiences that will ring true for anyone who has fought this disease and battled the doctors who deny that the tests are faulty. More importantly, she helps the lay person understand the science that exists which proves the stealth of this organism.
    Have undiagnosed pain or a recent diagnosis of fibromyalgia or chronic fatigue? Rheumatic disease that isn't responding to treatment? Had a Lyme test done but you were told it was negative? You need this book.
    There is scientific evidence to support the need for new testing protocols.
    ...more info
  • Pamela Weintraub is a hero
    Pamela Weintraub is a hero for those who suffer from Lyme disease and it's co-infections. Her and her family fought this disease and we are all lucky that she is well enough to be able to write about it.

    Her writing is eloquent, fair and well researched on this controversial topic. For someone who is new to the topic of Lyme disease, this is a thourough and REAL piece of journalism which does address both sides of the debate. She uncloaks the PG rated news reports, and gets to the real horror of this political debacle, and how people have had their lives ruined or taken due to lack of medical treatment.

    She is something that the Lyme community desperately needs right now: a fair and well researched medical journalist to bring the human side of Lyme disease to the forefront in a credible way.

    If you want to know more about or are new to the Lyme debate, this book is for you. If you have a loved one who has been diagnosed with Lyme disease, this book is for you. It is not one sided, it is fair, it is journalism.

    You just wouldn't believe that this could happen in America, and you never think it could happen to you but it can. ...more info
  • Required reading for EVERYONE
    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.

    Kim
    www.spirochicks.blogspot.com...more info
  • A Frustrating Account
    I was prepared to have this book confirm my sense that in the course of becoming big business, medical practice has become increasingly unresponsive, uncoordinated, and impersonal. However, this is one of the few books that actually nudged me towards siding with establishment doctors, despite the reputation that many of them have for being egotistical and abrupt. That's because I was exhausted and confounded just reading here about the prolonged symptoms attributed to Lyme disease. I could imagine doctors being similarly eager to turn their backs on the problem.

    Weintraub's family seems to have had an unusually high degree of sensitivity to one or another of the spirochetes charged with causing Lyme disease. She and a large percentage of the fellow sufferers with whom she's ultimately been able to network have endured years of crippling pain, enervation, and disorientation. Many of these people had trouble getting their family physicians to reach an initial diagnosis of Lyme disease, due to the equivocal nature of the test blots used. Then once they had been at least tentatively diagnosed, they had even more trouble getting their doctors to continue prescribing the massive doses of antibiotics over the months and years it took to make any difference in their condition. As a result, many of these patients have turned to the handful of doctors who surreptitiously continue to prescribe the antibiotics for them, risking their medical licenses in the process.

    It might be difficult for the average reader lucky enough to enjoy relatively good health to relate to this sort of on-going medical extremity. It becomes even more difficult to relate after Weintraub tells how her family members' actions might have occasionally contributed to re-activating the disease. For example, she tells how one of her children, after being virtually bedridden for years, finally rallied under his regimen of antibiotics and became strong enough to attend an area University. Knowing her family members' ultra adverse reaction to whatever was injected into them by those deer ticks endemic to the northeastern region, she had always had the sorry task of keeping them away from any exposure by keeping them away from nature. No gardening, no walks in the woods, no jumping into piles of autumn leaves. All these delights were forever foreclosed to them. She hoped her children would continue to take the same precautions as they became well enough to once more go out into the world.

    But when she first visited this son on campus, she was horrified to see him running BAREFOOT across a lawn. And sure enough, soon afterwards, his symptoms returned with a vengeance and laid him low again. In effect - back to square one.

    So I could sympathize with even the most callous doctor's dismissal of these cases. I finished the book feeling similarly helpless and frustrated - and still very far from any answers....more info
  • informative, but hard to follow
    Cure Unkown is chock full of vital information about Lyme Disease. But I found the formatting difficult to follow; it leapt from the middle of one case study to the beginning of another, going back to finish one anecdote after several unrelated chapters. This made it hard to keep the individual cases and patients straight, I eventually made myself a note card to keep track of the different sets of interviewees and their backgrounds. Still, the book contained a great deal of useful information, I just wish it had been easier to keep track of....more info
  • CDC: Please read this book!
    Even after years of suffering with lyme disease, I learned many new things from Weintraub's book. The history and politics that surround this disease still amaze me and she does an excellent job chronicling both along with real life stories of people who suffer or suffered with lyme including herself.

    I noted with great interest that Gary Wormser who so opposes the idea of chronic lyme refused to be interviewed. Anyone who has lyme or knows someone with lyme should read this book....more info
  • Cure Unknown: Inside the Lyme Epidemic
    This author provides a completely unique perspective. She and her family have been deeply affected by this still unknown and understood bacteria, and at the same time she offers her wonderful ability in writing hard science and detective work to provide the most up-to-date book on Chronic Lyme Disease aka Tick-borne Disease. It's science that will grab you, scare you, anger you, make you hopeful, and leave you anxiously waiting for the rest of the story! Fascinating! ...more info
  • Helped Guide Me Through The Maze of Lyme To Help My Daughter
    This book was incredibly helpful in understanding Lyme history. To answer the question of why doctors debate over this. Because of this book, I knew what to do to help my daughter. So far, my daughter is recovering beautifully. The book was very compelling and well written, always a help when you are studying a meaty topic....more info
  • Cure Unknown/ Inside the Lyme Epidemic
    I am very pleased with the service and the condition of the book. It is also very factual and informative. I am a Lyme sufferer and need to be on the know. Thank you for having such informative books available....more info

 

 
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