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The Baker's Dozen & the Lunatic Fringe: Has Junk Science Shifted the Lyme Disease Paradigm? Paperback – January 15, 2009
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Comprehensive scientific journalism - the author has laboriously and meticulously put together all the relevant references to tell the story and shed light on what is currently known on the disease both clinically and in research, and what is currently suspected or questioned, and why. Yes, including authoritative research sources. Examines both sides of the controversy and what their arguments are based on, in depth. This is not light layperson reading - reads more like a reference text in laying out the whole lyme context and controversy in the U.S. Lays out precisely why the argument (IDSA standpoint) against the existence of long-standing lyme organisms infection is junk science, and the still-overlooked professional conflicts of interest among the dozen influencers of that standpoint which have been brought to light.
If there's anyone you care about who has been diagnosed with lyme, this is the reference you should reach for first for this scientific, informed, intelligent, thorough and rational collection of information.
Should be required reading for all existing doctors and at all med schools - which is unlikely, since which interests fund the med schools' research? And which interests are highly lucrative for medical research professionals outside of universities? The root of the problem is that the business paradigms which underlie the medical practice and research professions are brought into question within the lyme controversy, because of the illogic of the IDSA standpoint... which in turn explains in whole or in part why the controversy is continuing in spite of an increasingly huge body of both research and clinical evidence to the contrary on the existence, diagnosis and treatment of "chronic" lyme. Both the business and scientific issues and evidence is included in this book, with references.
Is this author a Ph.D. and has she spent a lifetime in professional medical scientific research? Not as far as I can ascertain online, but it does appear that she's done various medical journalism and the related research work, written textbooks and coauthored papers with medical Ph.D's. In this book especially, she demonstrates fine intelligence in understanding the literature, navigating among a plethora of material, and putting the entire picture together. Dr. Burrascano and Dr. Bransfield have lauded her work - and regardless of whether one agrees with their work or not on lyme - they are two very sharp cookies.
Here are all the references for the IDSA versus ILADS positions, in one place, with all the various issues and their evidence, logically grouped together. (You can go to ILADS for more, or if you have the access, look up the papers listed in this book - that'll keep you busy for a long time!...)
In detailing the scientific facts and references, this book respectfully and thoroughly explains to a large degree how this whole mess may have came about; what we know and what we don't know; what evidence, omissions, distortions, reversals, and outright incorrect statements make up the official stance against chronic or entrenched lyme; and existing evidence supportive of the chronic lyme argument. It's well worth the money, used or new.
By the way, isn't it interesting how many knee-jerk, emotional and/or irrational responses occur from many medical practitioners, researchers and among families in denying lyme as something to consider among all the various potential underlying causes of certain serious ailments, compared to other diseases?
If chronic lyme was hogwash, as Steere & Wormser's (ethically-contradicted) side of the IDSA would have us believe, then the whole thing would have washed out long ago (`chicken little'). But instead, the controversy keeps heating up... the evidence keeps mounting (globally)... Departments have been formed to study and handle it (e.g., Columbia University, NY), and hearings for proposed state legislation to prevent unjust harassment of physicians who treat it get packed standing-room-only attendance. And the numbers of people who are diagnosed (after lengthy evaluation) with it keeps climbing rapidly (even doubling annually in some areas). And that increase in cases is not because diagnosis has become some trendy pigeonhole. (Far from it - diagnosis typically occurs only after a long line of doctors, tests, and years of suffering illness.) Actually, most frontline doctors are still either misinformed about it, or avoid diagnosis like the plague out of fear for their career. It's safer for physicians to blindly follow the dogmatic line and scoff at the idea of entrenched lyme/coinfection, and to denounce the few lyme-treating physicians vultures (as though the scoffers themselves do not get paid for office visits!).
To vastly understate the situation: for most front line doctors, handling entrenched lyme is politically incorrect; it's safer in terms of career and potential liability to keep head in sand and thus avoid it by whatever means possible. There's plenty more patients so they can keep their business running quite well by only accepting those patients who question nothing or have things we know how to treat and are non-controversal and not disproved by the insurance industry (and therefore, federal guidelines).
Besides, modern medicine is not really trained to look for root causes - usually western physicians are taught to slap a latin name on it which describes the condition or its symptoms, and then treat the symptoms. If technical engineering worked like that we'd still be in the stone age.
Complicating factor is that the better tests for lyme require a greater consistency of quality control and meticulous procedures (i.e., higher labor costs for higher accuracy) than fits into the average business strategy for most labs... so they support a witchhunt against their competitors, the few labs who are rigorous in their test procedures and handling.
This is all both sad and ridiculous, because when diagnosed and treated properly, lyme can be controlled or driven down to inactivity, and people can get their productive lives back. Yet thousands continue to suffer, become disabled, lose their homes and livelihoods, and eventually die, and thousands of new people become infected yearly, everywhere. This can be prevented better and controlled better, but right now the business politics still seem to be stacked against good scientific medical practices.
As usual, medicine is limited by bottom-line business and related political drivers. Nothing is solved in such a situation until the root issues are widely identified, so that new approaches to deal with the underlying roadblocks can be developed (preferably in some win-win manner for greater sustainability).
There's a new book out as of Feb 2010 which may prove interesting on these root human issues, by economist Dr. Helene Jorgensen (Ph.D. American University, Economics; M.S., George Mason University, Environmental Science and Policy). Book title: "Sick and Tired: How the U.S. Health Care System Fails Its Patients," (Polipoint Press, February 2010). Amazon already stocks this; editorial review says "...examines institutional failures at every stage of the U.S. health care system, including diagnosis, treatment, insurance, and prescriptions. Having surveyed those failures, she offers practical guidelines for their correction."
I was concerned that the few physicians who offer services as malpractice experts on tick infection treatment, particularly Lyme disease, have biases and behavior than was quite concerning. After reading, I was surprised they would be used by any credible medical board or in any legal setting.
For years, major journals have discussed forces that undermine the credibility of research, papers, medical education, conferences, guidelines, etc.. Indeed, the forces that are involved with "lyme guidelines" seem far worse than in other areas of medicine according to this author's detailed presentation.
PATIENTS who are confused thier experience with thier unique health outcomes does not fit a particular approach, specifically a simple quick treatment style, will find ample information as to why the nation needs to start from scratch on the treatment approachs to tick-borne diseases.
As someone trying to listen and respect various infection physicians offering guidelines, this was a sobering wake up, and added to my belief I have to do my own homework and serious reading. If I were to depend on a limited few to define care, I would only be offering lazy and flawed medicine. While I understand physicians are time abused, and reading a mere 100 articles on anything is almost never done, than this should be understood. Specifically, patients, medical boards, courts and insurance company reviewers, should know that thier physician or expert has not had time to research this infection. Since being used as an "expert" is ABOVE routine care, reading 1,000 articles on Lyme disease and other tick infections should be required for each. And the articles should not be filtered for one style of care or ideology. In politics or the media, we expect at least two positions to be represented for "fair" coverage. I am concerned with any board reviewer, expert, lawyer, media sopurce, or passionate clinician who only reads one perspective.
This text also made me realize why so many patients do not trust the status quo. This author offers many reasons for serious concern that the corrent routine approach to Lyme disease is fully off the tracks. She makes her case with very serious research and logic. I do not care if you agree with her, I just do not see how her research can be ignored.
This is THE Lyme book to get to understand this horrible illness. One that myself and my family have been fighting for years. And yes, we also have a library of Lyme books in our house. Thank you SO much PJ Langoff for writing this incredibly comprehensive book. I am recommending it to everyone!!!