Warren M. Levin MD, Alternative Medicine, Lyme
Foreword: Nutrition and Your Child's Soul
by Warren M Levin, MD
A Victory Against Conflicts of Interest in Medical Guidelines
What perfect timing! If I had been required to complete this forward three weeks ago, I could not have had the opportunity to exult over a major victory in a key battle in the huge internecine war between the powers-that-be behind the scenes in American Medicine and the foot soldiers – the docs on the front lines – in the trenches so to speak – that are responsible for translating the Newspeak from CHIMPSNUTSGDIC to the suffering hordes of misdiagnosed and mistreated sufferers from Tick-Borne Diseases [“TBD’s]
Our legal champion, Attorney General [“AG”] Richard Blumenthal of Connecticut, has been upheld in the first skirmish to reach the Court System, thus compelling a truly Scientific Review by an independent panel of the “Evidence” upon which critical Guidelines are based. The 21st Century has been hailed as the beginning of the era of “EBM” – Evidence-Based Medicine – meaning the combination of faxes, email, cell phones, and Internet telecommunications with the latest gadgets of electronic wizardry that has theoretically enabled anyone to look up the most recent evidence about the rarest medical diagnoses. The major concerns of EBM are the Guidelines for DIAGNOSIS and for TREATMENT, that are supposed to allow the lowliest practitioners in the hierarchy to apply that information for the benefit of patients flung out in the furthest jurisdictions from the Ivory Towers of Research – which of course implies in the USA, as opposed to all the backward countries on other continents. Certainly such goals are laudable, but they must be viewed with concern for the objectivity of those who assume the mantle of authority as promulgators. The AG has raised serious doubts about the apparent conflicts of interest behind the IDSA’s Guidelines for Diagnosis and Treatment of Lyme Disease and its Co-infections, as published in Printed Journals and, more importantly, reproduced in the official US Government website for all diseases:
The authors are a panel selected by the Infectious Disease Society of America [IDSA], a Guild limited to holders of Board Certification in that sub-specialty -- certainly the obvious choice for expertise. Regrettably, we must come to grips with the possibility that they have been trained incorrectly.
Consumers of medical care should be aware that there is now a de facto usage of these Guidelines to control the practice of medicine, according to the paradigms of the incestuous relationships between the various organizations. The economic interests of the various parties – subsidized by Big Pharma and the Insurance Consortium, with their revolving-door Executives and Directors – have resulted in denial of benefits to patients, persecution/prosecution of physicians who don’t kneel and kiss the rings of the Prophets, huge profits for Big Pharma and the Health Insurance Industry – especially in the salaries and “golden parachutes” of the highest officers – while the prices of their products continue to rise to “cover the increased costs.” Then, they reduce benefits to the patients, and limit the time a physician can spend with a patient to some predetermined average per capita, so that the physician must choose between spending enough time with each patient or earning more income by seeing more patients per day.
Simultaneously, in the case of the TBD’s the same economic interests have led to untold suffering of countless patients because of the misapplication of the principles of EBM that allows insurance companies to determine what is the acceptable treatment – the specific drugs, the proper dose and the length of therapy, all without seeing the patient! If the attending physician disagrees, s/he can initiate an endless, unpaid appeal process, spending hours “on hold” by phone, after navigating the automated corporate answering machines with their opening “Your call is important to us…” followed by “Our directory has changed…” only to get “The person at extension 1234 is unavailable…” ad infinitum. The alternative is writing letters to nameless reviewers with minimal credentials who merely repeat the party line, even though George W. Bush signed a federal law in 2002 ordering practitioners and insurance companies NOT TO USE THE CDC GUIDELINES for determining a diagnosis for an individual patient’s treatment or reimbursement! [Public Law #107-116]
What are the differences?
I want to point out the major differences of opinion between the IDSA and the “loyal opposition” as represented by the International Lyme and Associated Disease Society [ILADS].
DIAGNOSIS & TREATMENT |
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| IDSA | ILADS |
1. “Two Tier testing” A. Screening antibody test i) If (+) perform Western Blot ii) If (–) no further testing! Four weeks of a low dose of a single antibiotic is enough to kill all the bacteria regardless of how long the patient has been ill. |
1. The Screening Antibody test is worthless!
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2. The Western Blot, if (+) by the standards of the CDC, are considered definitive, but many proven cases have had (–)WB’s so that a high “index of suspicion” is required, and other forms of tests, such as antigen detection, DNA by PCR, Melisa responses, and others not “officially approved” may be needed. |
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| 3. Therefore, there is no such thing as “chronic Lyme disease”! Anyone with symptoms after an adequate PCR, (4 week) treatment with antibiotics has the Diagnosis: “Post Lyme Syndrome” | 3. The only time 4 weeks of one antibiotic may be adequate is within the first few days after a bite, when no tests are available commercially. An EM rash is also recognized by both sides as an indication to treat, without “proof” from the lab. |
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4. We don’t know what causes it, or how to treat it (except to try to relieve those pesky psychosomatic symptoms). It is possible to have Lyme disease and not be diagnosed – that is called Late Lyme – it will also be cured by 4 weeks of antibiotics. Do not use more than one antibiotic at a time.
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4. All Late Lyme, diagnosed and untreated for more than an indeterminate number of days after a bite, requires long-term, high-dose antibiotic therapy, with a combination of at least 2 “classes” of antibiotics simultaneously for the specific purpose of attacking the two different life-forms of this clever organism. These have been formed in self defense, and recognized by many investigators all over the world with different terminology, basically falling into spirochetes with cell walls and “cell-wall-deficient” forms. |
IDSA
The only coinfections discussed were Babesia and Ehrlichia/Anaplasma. There was no mention of Bartonella or Mycoplasma, and the idea that there was no mention of prophylaxis against Candida albicans during all these weeks of antibiotic therapy is appalling.
No mention is made of the critical importance of Nutrition in the Miracle of Healing. Similarly, no discussion of the possible findings of toxins, [chemicals by the thousands in the environment and heavy metals contribute to immunological issues as well as other organ system problems],
ILADS
The search for co-infections is a major concern, as many of the patient failures are ultimately traced to those complications. In addition to the other infections passed by the same tick bite, we are also concerned about the impaired immune function of many of these patients contributing to multiple other infections, including EBV, Candida, various intestinal parasites, Cytomegalovirus, HHV-6A, and the antibiotic induced diarrheal states including C. diff , Klebsiella, etc.
When carefully tested, a majority of Lyme patients show endocrine dysregulation, with the adrenals, thyroid and gonads heading the list. Many times those problems are reflective of hypothalamic/pituitary instability. It has not yet been determined whether any of these glands are damaged by the Lyme itself in a significant number.
Finally, the use of “surrogate markers” to help determine when Lyme is active has been brushed aside by IDSA. Yet the falling CD57 +, CD3 -,CD8 – Cell count is similar to the CD4 Helper Cell count that has been used for years to screen for AIDS. Also the C4A fragment of complement when elevated seems related to activity of Lyme. The use of Cholestyramine to remove putative Lyme chronic Neurotoxins, pioneered by Dr Ritchie Shoemaker, “just” a GP in the trenches, has made dramatic changes in their “Post Lyme “Syndrome, as has treatment for the Candida invasion triggered by well-intentioned treatments for this persistent infection.
WHAT DOES ALL THIS MEAN TO PATIENTS?
First of all, the American Medical Paradigm works great for acute illnesses. If I have an acute attack of whatever, I want to go to one of the great religious institutions like St Vincent’s, Columbia Presbyterian, Mount Sinai, etc. But, when I recover, then I reach the place that our current ideation of giving drugs for symptoms falls very short. Chronic illness is the orphan of American Medicine. When Lyme disease becomes chronic, and it does, patients suffer.
There are, indeed “Two Standards of Care” for Lyme disease. They are both now on the www.guidelines.gov website. One is from IDSA and one from ILADS. That is confusing for patients and physicians. It can make a lot of work for lawyers. In our litigious society, if the IDSA doctors that wrote the GUIDELINES were to suddenly “see the light”, and pronounce their mea culpas and beg forgiveness, they would be sued unmercifully. The accounts that I hear in my office are horror stories of sick and frustrated people who cannot obtain their treatments, and they are justifiably furious. I believe that the only way we can get through this impasse, is to have Federal legislation passed to provide total amnesty for errors made in this developing body of uncertainty, but with a definite deadline in the near future, so that each physician can thenceforth be judged on his own acts and their consequences.
I have great respect for all the physicians who have taken the time to become super-specialists in their chosen fields. Such training is grueling and still carries with it serious underpayment throughout residency and fellowship years. Unfortunately, all of us have been taught things that we must learn to forget, because they are wrong. No one has all the right answers. I referred above to the physicians in the trenches, at the front lines with the patients. We must not forget that the patients are in the trenches with us! Sue Vogan has written about her odyssey with Lyme disease while part of the Military Family. Her personal trials and tribulations are recounted powerfully in her book: NCO: NO COMPASSION OBSERVED. I hope that these writings will bring Hope to other sufferers.
We are getting better as we learn more from Borrelia burgdorferi – when patients get together they can change the way Physicians see them! I urge all of the readers to become Activists in the fight for patient’s right to choose, and for doctors to provide “informed consent.”