Customer Reviews

Cure Unknown: Inside the Lyme Epidemic

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As a California physician, I have found myself diagnosing Lyme disease in an increasing number of patients who come to me with vague, multi-system complaints, but certain consistent patterns: living, working or playing in outdoor brush or field areas (gardening, golf, hiking, camping)is the first, but many have only a little outdoor exposure. Second, complaints of the slow onset of stiff, aching joints that get better and worse, sore muscles, that spasm, tingle and turn numb off and on, headaches and fatigue, problems with sleep, an up and down course that slowly gets worse. Pamela Weintraub, a professional writer and editor, tells her story of her family's move to a rural New York community as healthy active people, only to have all four family members contract Lyme disease in the early 90's, and face not only the disability of this infection but also the confusing double talk of a medical community in denial. She tells not only her story but those of others, and in the telling reveals the difficulties in getting an accurate diagnosis, in finding a doctor to believe and treat the patient, and in being able emotionally and financially to continue the treatment until the disease is resolved. If you are a patient with Lyme disease, perhaps you will learn some things you didn't know before. If you are someone who has believed that perhaps Lyme disease is a myth, or that the people who have it are exaggerating, this is the book for you. If you are a physician, and have quoted the Infectious Disease Society of America's treatment guidelines to a suffering patient to explain why you will not treat them, or will only treat them for three weeks- this is the book for you. Those of us who have Lyme disease, or treat Lyme disease, know it to be as devastating and disabling as a HIV infection, and in many cases, as difficult to cure. Give this book to doctors, to journalists, to scout leaders who take kids into the woods, to your friends who go camping, gardening, horseback riding; to your friends with furry pets, or those who enjoy the deer in their yards. We have a serious growing epidemic in this country, affecting young and old. Let's wake ourselves up to proper treatment and prevention. Dr. Tedde M. Rinker, Redwood City, California

I'm not a doctor, nor a medical researcher. But I am a parent who's been fighting for the life of my teenage daughter who has now been diagnosed with Lyme Disease + 2 co-infections. I have a biology degree and have been through a lot of illnesses myself, but I've never seen anything like the story of Lyme. This book is a must-read for all parents. It is a fact-based narrative that tells it like it is, from the political in-fighting in the medical community to the important research that's not getting the attention it should. And the stories it tells about those infected with Lyme are mesmerizing. We fight for a diagnosis, then we fight for treatment. If my family wasn't living this story ourselves, I'd think this was a Stephen King novel.

Superb book that reads like a scientific who-done-it. Rarely has Lyme Disease been as accurately presented in the variety of symptoms, treatments and policies. But most of all it describes a heartless medical bureaucracy that sacrificed thousands of families into bankruptcy, permanent illness and even death to satisfy insurance company lobbyists. Lyme is the Tuskegee experiment of this century.

Incredibly well written and answers many questions of why Lyme Disease is such a problem all across the US and world.

The Doctors, medical societies, health departments, and government who should be there to protect our citizens has failed us on so many levels. Pam put's it together and tells us some of the stories and why.

The argument over Lyme Disease should have been resolved over 20 years ago when they first discovered this disease in significant numbers of people.

Today it continues to be the most political, misrepresented, undiagnosed and devastating disease that you can get from otherwise living a health active lifestyle. It's as easy to get as small tick bite, yet as hard to get help as if your swimming with a shark.

They used to say "You don't get Lyme, until you GET Lyme". Now people can get Lyme by Reading Pam's Book.

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

I am so thankful to Pamela Weintraub for writing this book because it has helped me navigate the murky waters of lyme in the last two weeks as we seek treatment for our 11-year-old son who was just diagnosed. Even though we went directly to a lyme-literate doctor for help based on advice from our naturopathic doctor we got a real whiff of what Pamela Weintraub refers to as "the land of lyme" during the last week. I was much better prepared to help my son because of this book.
I am appalled that something this serious and this widespread is not being given more press and that children continue to go off to camps (where my son and another classmate picked up lyme disease) where camp staff, parents and teachers are blithely unaware of the very serious risks posed by ticks. I am simply in awe of Weintraub who was able to write such a riveting and scholarly book after all she and her family has been through. Great job! Thank you! Thank you! Thank you!

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.

Three cheers for Pamela Weintraub's Cure Unknown, the first book that accurately presents an objective and in-depth look at the historic obstacles to progress in Lyme disease research and treatment. This book significantly investigates how the disease has been mischaracterized, mishandled, and poorly defined by many so-called "experts" for over three long decades.

In a rush to produce patents (and vaccines) before patient care, well-meant scientists have helped contribute to an epidemic of neglected, chronically disabled, and in some cases, cognitively impaired children and adults. What's more, after endless political infighting over practically all aspects of the disease, the bottomline remains: To date there is no 100% reliable diagnostic test; no 100% reliable treatment regimen; no 100% reliable cure or test for cure.

Please consider giving an extra copy of this book to your family doctor. It will go a long way towards providing much-needed information, and will hopefully reverse much of the stigma involved in clinically diagnosing and treating people with Lyme disease and related tick-borne illnesses.

This is an EXCELLENT book! It explains the history of the lyme disease controversy, and the corruption of the Infectious Disease Society. Many patients are suffering because of the IDSA's flawed guidelines to lyme disease detection and treatment. Lyme disease is an epidemic that is expanding. Believe me, you don't want to become one of these patients that have to fight for a diagnosis and proper treatment-and told that it's "all in your head". It is appalling that we live in the United States, and yet we are treated this way. Until you come down with an illness, such as lyme disease, you may never really realize how corrupt our society, and the medical establishment is. It's all about money and profit for the pharmaceutical companies.
Read this book!

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