Cure Unknown: Inside the Lyme Epidemic

Cure Unknown: Inside the Lyme Epidemic
by Pamela Weintraub

Cure Unknown: Inside the Lyme Epidemic
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Book Summary Information

Author: Pamela Weintraub
Edition: Paperback
Audio: English (Unknown); English (Original Language); English (Published)
Published: 2009-10-13
ISBN: 0312378130
Number of pages: 448
Publisher: St. Martin's Griffin

Book Reviews of Cure Unknown: Inside the Lyme Epidemic

Book Review: Excellent account of Lyme disease & current medical policy
Summary: 5 Stars

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

Summary of Cure Unknown: Inside the Lyme Epidemic

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.

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