Forwarded to the Silverlist by S-Max -------------------------------- From: [email protected] Date: 9/2/2007 9:05:14 AM To: [email protected] Subject: [EastBayLyme] Good letter pro-ILADS position August 26th, 2007 The Honorable Jon S. Corzine Chairman Health and Human Services Committee National Governors Association 444 North Capitol Street, NW, Suite 267 Washington, DC 20001 Dear Governor Corzine, This is further to the Infectious Disease Society of America (IDSA) president, Dr. Henry Masur's letter to you dated August 7th, 2007. We do not normally involve ourselves outside of Canada on the political front, but the issue of Lyme disease is borderless so please indulge us for our imposition. The IDSA guidelines have done more harm to people throughout North America than any other medical guidelines we are aware of. Because the infectious disease community in Canada are so closely tied with the IDSA, this Canadian group adopted the guidelines (Canada has done no research of it's own) and these guidelines have now become entrenched in our closed socialized system. This is one massive flaw in our medical system, it allows outside lobby groups such as the IDSA who for the most part represent business interests, to easily dominate our medical care. We've become too comfortable in avoiding the cost of doing research here in Canada by simply adopting research of others, no matter how poorly executed the research is. We attach a copy of our letter to the IDSA medical journal in response to their published guidelines. Until proper post mortem, and multiple live tissue studies per victim, employing all testing technology available is done on victims of those several diseases linked to Borrelia burgdorferi, the bacteria that causes Lyme disease, very little can be said about present testing accuracy, prevalence, what symptoms can be attributed to chronic Lyme disease, and what treatment methods are effective. This makes the entire IDSA document premature and not worthy of a health care guideline. We are attaching copies of research abstracts showing just a fraction of the research that has been done relative to other diseases and Lyme. We are also attaching research showing transmission of this disease via a mother's placenta to her unborn child. If the IDSA is that confident in their recommended testing protocol, how possibly could Lyme bacteria be showing up in the numbers it is in these other diseases (Alzheimer's, Multiple Sclerosis, Colitis, Crohn's disease and many many others). Where along the line is it being missed? Only now that victims' associations are becoming strong enough to fund the necessary research that government has been reluctant to fund in both our countries for over two decades will the evidence flow forth to even begin to look at creating guidelines. 2) It is this reason that laws must be put in place, to tell insurers it is not okay to deny longer term treatment for Lyme disease, and to protect those doctors who are doing their very best to keep their patients' quality of life manageable. Premature guidelines are being pushed upon doctors who know they will only cause harm to their patients. The IDSA has stated concerns about the dangers of antibiotics, and this is a good example of how poorly they support their position. Antibiotic harm pales in comparison to the heavy narcotics, anti- psychotics and other medications used to treat the many individual symptoms Lyme disease is responsible for. Some Lyme victims have to wean themselves off these dangerous drugs before they can start antibiotic therapy. Antibiotic resistance is a non-issue so long as we pump antibiotics into our food farm industry by the ton as we do now. The IDSA boasts about the 400 references they cite in their guidelines as though it somehow gives evidence as to their expertise. The majority of these references are the author's themselves and their cohorts citing each other's work after carefully pruning out any contradictory research from the in excess of 20,000 research papers on Lyme disease from around the world. Doctors who dare look at the entire global databank of research are quickly put in place by their medical professional licensing bodies. Professional witch-hunts occur using tactics that would not be allowed in a public court setting. What never ceases to amaze us is how few people actually run the medical professional organizations who then also author guidelines, set testing criteria, and then police their members to enforce members do only what they tell them they can do. We all need to take a hard look at how often the leaders of one organization are also in the leader group of another, and who then also sit on policing panels. Why are the tens of thousands of good medical minds who do not own patents or represent medical insurance or other for profit interests not making the decisions? Have a look at who sat on the Association of State and Territorial Public Health Laboratory Directors panel in 1994 that set the harmful two-tier testing protocol and then look at who authored or provided the research papers for the 2006 IDSA Lyme guidelines. Why do this group of researchers control every aspect of the disease? It doesn't equate, other than for control. Why is it that so few people control so much in this field (health care) where even a hint of bias or conflict should be alarming (because life and death or somewhere horribly in between are at stake)? Who are they and what is their interest? Why are they allowed to dominate every aspect of a disease for so many years? How did rules get put in place so this small group, relatively speaking, are able to operate almost with impunity and no public oversight? You will need to find out how many of these of people are also those who sit as reviewers to select which research gets the funding nod from federal and state taxpayer dollars through the many funding bodies. Only like-minded researchers get funded. We have the same problem in Canada. How has this domination affected the quality and direction of research? Could it be that the medical financial crisis in North America is in part fabricated because of missed research opportunities? Why is so little common sense basic `find the root cause' research not funded anymore? Post mortem and live tissue study are the foundation of medicine. These are the same hard questions we are asking our government now. We refer to the present system as one of `farming sickness'. In some cases doctors are used as pawns in the farming process requiring legislation to offer them protection from a very powerful, well funded, and carefully positioned group of sickness farmers spread across several continents. 3) In order for there to truly be experts in a particular disease, they must have studied all aspects of the illness. With there being such an apparent avoidance of `no strings attached' research into how many of the millions of people (1.5 million in Canada alone) who are left with diagnoses of diseases with no known cause, may actually have Lyme disease, there are no true experts. Until the IDSA can present verifiable research showing that Lyme bacteria plays no role in other disease processes that other research has indicated Lyme in fact does play a role in, how can they refer to themselves as experts? The IDSA, in regards to Lyme disease, are experts at creating algorithms backed by their own narrowly focused research creating data that no one else has validated except from within their own network of well-connected, well-funded cohorts. It should be no surprise that they want you ask them to provide `experts'. Please put legislation in place to help patients get the treatment those of us who suffer know very well works regardless of what a contrived document says. Protect the doctors, who treat their very sick patients, from witch-hunts. After the protections and treatments are in place for the sick, and the doctors who treat them, go ahead and hold hearings and commissions to look into the entire matter of Lyme as the IDSA suggests. That process will go on for years if history is any indicator and those who have created the mess will have retired before any change comes about, which is their likely goal. Victims' lives are being destroyed now, so the legislation must be put in place now. If you do this, Canada will no doubt follow so therefore we have a very real and selfish interest in what unfolds. Instead of spending millions on hearings as the IDSA suggests .. funding multiple Lyme disease research facilities to do the necessary post-mortem and live tissue study of all those diseases linked to Lyme (and the coinfections) may be a better use of money, especially if Lyme disease victims associations and `no-strings attached' researchers are given a role in research and oversight. Again, that is a selfish wish but one that would be good for all. We've been telephoned and emailed by many Americans asking if we have such a facility where they could donate their bodies or organs, or those of their loved ones. We do not yet but we are in the process and it will have the necessary oversight. Rather than enclosing sensational media reports as did the IDSA, we enclose research abstracts indicating Lyme disease is linked to other serious, life altering diagnoses that are collectively bankrupting our various governments' health care coffers. Thank-you for your time and we apologize for our uninvited input but this is such a serious matter for so many people now and in the future, we thought we must point out that the IDSA guidelines' harm is not limited to the United States. Yours truly, Jim M. Wilson AIIC President, Canadian Lyme Disease Foundation (on behalf of our board of directors www.canlyme.com/directors.html)
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