Cure Unknown: Inside the Lyme Epidemic
by Pamela Weintraub
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Book Reviews of Cure Unknown: Inside the Lyme Epidemic
Book Review: A Frustrating Account
Summary: 3 Stars
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.
Book Review: Fills a need in Lyme literature bookshelf
Summary: 5 Stars
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
Book Review: Doctor recommended, a compelling read!
Summary: 5 Stars
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, CaliforniaBook Review: Required reading for EVERYONE
Summary: 5 Stars
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
Book Review: An invaluable Gift!
Summary: 5 Stars
With the up close and personal experiences of a patient and the objectivity of a science writer, Pam Weintraub has brought order out of the topsy-turvy world of Lyme land. Not only does her big picture narration make sense, it is engaging and readable.
She avoided what could have been a temptation to engage in attack-mode-advocacy, which would have further polarized the existing camps in the Lyme and academic communities. She did not go down the conspiracy path. She did not psychologize the suffering of Lyme patients. Instead, she stayed with the facts. Treatment of Lyme disease is extraordinarily expensive. The treatment is not always successful and can be dangerous. The cure is unknown. But there is more to the story.
Her discussion of a comment by psychiatrist Dr Bransfield illustrates. A Lyme patient, different than the "run-of the mill" bipolar disorder patient responded well to IV Rocephin. After reading this book one could also conclude that Lyme patients with autism, MS and ALS are different from the "run-of-the-mill" autism, MS and ALS patients.
Lyme and associated infections are not easily treated and can be chronic. Bipolar disorder, autism, MS, and ALS are sometimes linked directly with Lyme disease and associated infections. Her narrative of dramatic "cures" of such diseases through treatment of--may I say--chronic Lyme disease is compelling. It suggests that an understanding of the complex interplay between microbes, genetic variability, and epigenetics is required for effective assessment and treatment. As long as Lyme disease remains a simplistic easy to treat malady, those suffering from it will continue to be ignored by mainstream medicine only to suffer chronic illness, and, in the case of ALS, death.
Weintraub has given both sides of the Lyme debate an invaluable gift.
David Moyer, author, Too Good to be True? Nutrients Quiet the Unquiet Brain--A Four Generation Bipolar Odyssey