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Cure Unknown: Inside the Lyme Epidemic, by Pamela Weintraub
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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.
- Sales Rank: #779042 in Books
- Published on: 2009-10-13
- Released on: 2009-10-13
- Original language: English
- Number of items: 1
- Dimensions: 8.32" h x 1.30" w x 5.49" l, .88 pounds
- Binding: Paperback
- 448 pages
Review
“Pamela Weintraub’s book is compelling, clear and troubling.”
–Patti Adcroft, editorial director of Discover magazine
“In Cure, Unknown, Pamela Weintraub has produced both the definitive book about Lyme disease and associated disorders and a survivor’s account of a grueling medical odyssey. Weintraub is a masterful science writer and storyteller, and she tackles the quarrels and quagmires surrounding this baffling illness with intelligence and pathos. This is an important and unforgettable book, destined to make a lasting contribution to the field of investigative health journalism.”
–Kaja Perina, editor in chief of Psychology Today
“A thoroughly researched and well-written account of the disease’s controversial history.” --Jane Brody, New York Times ”Pam Weintraub, veteran science writer, weaves personal narrative with hard-hitting investigative journalism to bring the underground epidemic of Lyme and other tick-borne diseases up from under theradar.” -Rebecca Wells, author of Ya-Yas in Bloom and Divine Secrets of the Ya-Ya Sisterhood. ”I sometimes wonder if the only investigative writers who will possess the necessary temerity to remove the white gloves and tackle these putative experts to the ground will be those, like Weintraub and thelate Randy Shilts, whose personal experience demands that they follow the rocky trail that leads to the truth.” -Hillary Johnson, author of Osler’s Web: Inside the Labyrinth of the Chronic Fatigue SyndromeEpidemic ”Millions suffering from symptoms of a mysterious disease need suffer confusion and loss no longer. If you want to know the real story behind Lyme disease and how to find your way back to health, read this book.” -Mark Hyman, MD, author of the New York Times bestseller, UltraMetabolism. ”Science journalism at its best.” --Amiram Katz, MD, Clinical Faculty, Neurology Department, Yale School of Medicine ”Weintraub turns a tragic yet eye-opening experience into a shocking exposure of what can happen when egos, greed, and peer pressure supercede objective evidence, allowing patients to suffer chronic,disabling illness.” –Donna Chavez, Booklist ”Exhaustively researched and highly recommended.” –Tina Neville, Library Journal ”A tale of biological complexities, scientific turf battles, political intrigue, human egos and money – lots of it.” –Dorothy Kupcha Leland, Sacramento Bee ”Living with Lyme gave Weintraub both the insight and the dogged ambition to find out some truths... rather than remaining stuck at the pro-Lyme, anti-Lyme debate, Weintraub spent many hoursinterviewing researchers who are experts in the ticks that spread Lyme, and the bacterial spirochete, Borrelia burgdorferi, that causes it. What she found is that these researchers -- at places like theState University of New York at Stony Brook on Long Island, and the University of California at Davis -- are slowly figuring out how complex the bacteria and the disease are. And Weintraub said, theseresearchers, by and large, confirm what many Lyme patients have learned through bitter experience -- the bacteria can cause a persistent infection that may not be treated easily by a couple ofweeks of antibiotics.” --Robert Miller, Danbury News-Times ”The view from inside the tick tornado: Sober but scary...A science and health journalist, Weintraub writes clearly and passionately about a mysterious illness that has confounded physicians, patients andscientists for more than three decades, while she tries to balance personal narrative and objective journalism... a comprehensive and compassionate guide to a dreaded illness named after a bucolic,tick-infested town on Long Island Sound.” --Bill Williams, Hartford Courant ”In the war of information on Lyme disease, patient activist groups have started from a marked disadvantage to the medical establishment in terms of visibility and credibility. That may be changing, and science journalist Pamela Weintraub’s new book, “Cure Unknown: Inside the Lyme Epidemic” (St. Martin’s Press), could be one reason. Weintraub, a senior editor at Discover magazine, uses her family’s protracted Lyme odyssey as the jumping off point for an exploration into the history, politics and, predominantly, the patient experience of the tick-borne disease.” --- Susan Morse, Washington Post
About the Author
Pamela Weintraub is a senior editor at Discover magazine. Previously editor in chief of OMNI and consulting editor at Psychology Today, she has covered science and biomedicine for national media for more than twenty-five years. She lives in Brooklyn, NY.
Most helpful customer reviews
39 of 42 people found the following review helpful.
Excellent account of Lyme disease & current medical policy
By free thinker
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.
13 of 13 people found the following review helpful.
Explains the public health disaster that is Lyme Disease
By paulie
Many have suggested people give this book to their doctors. Great idea, but do not be surprised if their docs just dismiss the whole idea of chronic Lyme. Patients would have better luck getting their docs to watch the Lyme documentary Under Our Skin. I did that with a few of my Lyme-denying docs, altho it was like pulling teeth.
I was misdiagnosed for decades, endured multiple orthopedic surgeries, had neurological and cardiac symptoms up the wazoo, many ER visits. Turns out it was all chronic Lyme disease. My whole family has it, and I believe my mother died of it. Lyme is the new Great Imitator; like syphilis, it can mimic a hundred other conditions: gout, MS, ALS, arthritis, A-fib, ringworm, trigger-finger, restless leg syndrome, panic attacks, depression, anxiety, schizophrenia, bipolar disorder, migraines, ocular migraines, multiple chemical sensitivity disorder, fibromyalgia, chronic fatigue,.............on and on and on..
Get thee to an ILADS Lyme specialist post haste. You will be on the road to nowhere if you stick to "mainstream" docs. These Lyme-denying docs are killing us. Recently I tried to guide two women to appropriate Lyme treatment - they both died, ages 57 and 67, because they were either too far gone, or their "mainstream" docs did not treat aggressively enough. One doc did not even mention Lyme on the death certificate (he eventually and reluctantly started treating her for Lyme), and I am reporting him to the State Medical Board.
This is a public health DISASTER. Think "Tuskegee Experiment" times a MILLION.
Thank you Pam Weintraub for this important book. You are saving lives!
13 of 14 people found the following review helpful.
A MUST HAVE book to navigate lyme waters!
By Rockie
Thanks to Pam Weintraub for combining her plethora of areas of expertise to compile such an amazing, factual, MUST HAVE book! Having been a lyme disease survivor and fighting the disease for over 25 years, I've spent over 6 figures and have seen over 40 doctors, been in countless hospitals and told to go home and die twice. I have spent time in both the IDSA and ILADS camps. I am a lyme war veteran, and my family has it as well. Having read many books on lyme, I am 100% confident to report that this book provides accurate, factual information and wraps it in a real-life "story", (which is Pam candidly sharing her life with us), that makes it relatable for the reader as Pam herself is a lyme veteran. Her journalism and science background is apparent and refreshing, combined with her writing style. Having read countless books on lyme, this is the FIRST book I recommend to anyone I know who has lyme and doesn't know where to turn or what's really going on, and why they can't seem to get accurate help and are confused as to "lyme politics". Thanks to Pam!!
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