The ABCs & XYZs of Lyme Disease:
March of the IDSA Puppets
Part 3 of a series of opinions
by Tina Garcia
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Watch and listen! Here comes the marching IDSA puppet army, looking so distinguished and dressed so smartly in their crisp, white lab coats, stethoscopes swinging to the loud beat of the drum. Their expressionless faces drawn taut with determination, they exhibit no sympathy or understanding for useless eaters, such as Lyme disease patients. Watch them march in lockstep across America toward every legislator's office. DON'T' get in their way, for their presence is commanding, and they have been programmed to complete their Mission. This army belongs to the Infectious Diseases Society of America, and they are the pre-eminent army of infectious disease terminators in the U.S.
The IDSA puppet army is 8,000 strong, or less by deducting any conscientious objectors, of which there must be some. They are unquestioningly the almighty authorities on Lyme disease. Though these troops rarely, if ever, fight in the trenches on the front lines by providing diagnosis and treatment for chronic Lyme disease, they still expect our undivided attention. Hut Hut!! Stand at attention as the troops march by. Don't look down! Don't look away! And don't look them in the eyes! We must give them our strict attention, but we are not deserving enough to meet their holy gaze! Reverence is what we owe them and how we pay them for their dedicated service to making our lives miserable!
The troops take their marching orders from their medical commander in chief, lobbying lieutenants and public relations gurus. These "sympathetic and understanding" soldiers have been instructed to fill in the blanks of pre-written form letters to mail to their state and federal legislators objecting to ANY and ALL legislation initiated on behalf of patients suffering from tertiary Lyme disease. It doesn't matter what the bill states; the IDSA will object to it. Make no mistake-THIS IS WAR!
As is the case in all wars, an enemy will feign friendship to trap its opponent in a snare. IDSA opponents are not only Lyme patients, but their legislators as well. To the IDSA, legislators are disposable tools they use to further their selfish agenda. To the patients, the legislators are rays of hope that their suffering may be alleviated. The IDSA snares come in the form of authoritative lobbying letters to legislators. A snare within the snare comes in a paragraph in the form letter in what at first appears to be a personal testimony of experience treating Lyme patients. However, all the paragraph really says is that the infectious disease physician treats "serious infections on a daily basis." Those serious infections rarely, if ever, include chronic Lyme disease. This paragraph begins with the words "On a personal note…" Then each ID physician encourages every patient to obain a second opinion. You may find this personal form letter on the IDSA's website at
www.idsociety.org.
I'm really touched by each marching puppet's expression of sincerity and experience, empathy and advice. Sure, patients will go for a second opinion, and a third, and a fourth, up until maybe a thirtieth opinion. I must inform the IDSA and its opinionated puppet army that, if a patient has obtained ten or twenty or even thirty opinions and they're still not diagnosed and treated and getting well, then these patients are going to obtain the last opinion from a Lyme-experienced physician. And why shouldn't they get one final opinion and receive helpful treatment after so many erroneous opinions and denials of treatment? For the IDSA and its army of one opinion to object to a chronic Lyme patient's eleventh or twenty-first or thirty-first opinion, shows that the IDSA is chronically obsessed with preventing diagnosis and treatment for patients suffering from long-term tick-borne infections.
The IDSA needs to get some help for their obsession with diagnostic and treatment denial. Can't they see that Lyme patients are not dependent upon them? Can't they just let go? We don't need their so-called advice, and we don't need the grief they heap on our plates on a daily basis. We need to concentrate on getting well. Our energies should be directed toward healing actions and thoughts. Patients are depressed from a physiological cause, and the IDSA is causing even more depression with its constant assaults on our health and well-being. IDSA and it’s member puppet army have lost sight of their Mission as healers, and instead, have focused their eyes on a Mission to destroy people's lives. This is unacceptable for an organization that claims to be a sympathetic and understanding pre-eminent authority.
IDSA, its former and current representatives and its Lyme disease Practice Guideline authors continually spew forth toxic venom that poisons medical journals, treating physicians, gullible and manipulated media and suffering patients. The latest venom landed in our faces from IDSA President David Poretz's March 21, 2008 letter to Senator Edward Kennedy. The following is my response to Senator Kennedy that debunks IDSA's venomous lies--lies that contradict its own Practice Guideline authors' published research.
Dear Chairman Kennedy:
As a chronic Lyme disease patient and patient advocate, I am writing to you today to respectfully request your support of S. 1708. It is imperative to the lives of thousands
of patients suffering with chronic Lyme disease that the Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2007 be heard in Committee, supported and ultimately passed.
This legislation is in the best interest of chronic Lyme disease patients. S. 1708 provides a means whereby open discussion of all medical and scientific research and clinical experience may be shared and implemented for the benefit of patients. S. 1708 can also lead to more diverse research efforts that will directly benefit patients in regaining their health, sorting through the pieces of their shattered lives and returning to their previous level of productivity. The major priorities for Lyme patients are effective and timely diagnosis, adequate treatment of choice and the receipt of entitled insurance benefits to avoid financial ruin.
Thousands suffering from late-stage Lyme disease, a documented virulent bacterial infection similar to syphilis, should have the right to treatment options that include short-term or long-term antibiotics. This treatment decision should be made jointly by the patient and their treating physician. In addition, according to the American Medical Association's (AMA) Informed Consent Guidelines, it is the ethical and legal responsibility of each physician (including infectious disease physician members of IDSA) to provide all treatment options to their patients (not only the treatment promoted by IDSA), regardless of cost or whether such treatments are covered by insurance.
I have been infected with Lyme disease since 1998. My diagnosis and treatment were delayed for six years until 2004. I have used long-term antibiotic therapy on and off for the past four years. When I first started this antibiotic treatment in 2004, I had debilitating cognitive dysfunction and could no longer work. I had excruciating pain throughout my entire body, but mostly in my legs, ankles and feet. I could barely walk. After four years of antibiotic treatment, I have made great progress in returning to my pre-disease function. I still have some function to regain, but both my cognitive function and pain level have improved substantially.
The bacteria replicated within my body for six years and it does indeed take more than thirty days of antibiotics to begin to eradicate them. In addition, there is no definitive test that shows complete eradication of the spirochetes within joint, tendon, ligament and nerve cells, as IDSA President Donald M. Poretz insinuated in his March 21, 2008 letter to you. CDC research in 2006 demonstrated the ability of the Borrelia burgdorferi bacterium to sequester itself inside nerve cells, thus evading detection by the immune system.
(http://www.leaparizona.com/Invasion_of_Human_neuronal_and_Glial_cells_by_Borrelia.pdf)
The following research published in 1993 by Dr. Mark Klempner, an IDSA Lyme disease Practice Guideline author, in the Journal of Infectious Diseases also demonstrated the ability of Bb sequestion inside fibroblasts.
"…We have demonstrated the presence of intracellular B. burgdorferi within HF (human fibroblasts) using laser scanning confocal microscopy …The observation of viable spirochetes within fibroblasts coupled to protection of B burgdorferi from extracellular microbicidal antibiotics by fibroblasts [19] suggests that B. burgdorferi may be among the small number of bacteria that can cause chronic infection by localizing within host cells where they remain sequestered from some antimicrobial agents and the host humoral immune response."
Quote from IDSA letter to Senator Edward Kennedy dated March 21, 2008:
"The premise for prolonged antibiotic therapy for Lyme disease is the notion that some spirochetes can persist despite conventional treatment courses, thereby giving rise to the vague symptoms ascribed to chronic Lyme disease.
Not only is this assertion microbiologically implausible, there are no convincing published scientific data that support the existence of chronic Lyme
disease." (emphasis added)
IDSA's statements are obviously false and I am asking you to investigate the reasons why the IDSA would be knowingly making false statements to government leaders, treating physicians and the public. I expect the IDSA to be held liable for the damage caused by its representatives' and authors' false and misleading statements. There must be an underlying reason or reasons for this fraudulent action by an
organization who touts itself as the "pre-eminent authority on the treatment of infectious diseases (ID) in the United States." The Lyme patient community absolutely refuses to be sacrificed on the altar to benefit the furtherance of a deceptive and fraudulent information campaign promoted by the IDSA and the CDC (through their posting of the IDSA Practice Guidelines for Lyme disease on their website).
I object to Dr. Poretz's reference to my clinical experience with long-term antibiotic treatment and the experiences of thousands of other chronic Lyme disease patients as a "notion." I am living proof of the efficacy of long-term antibiotic therapy, and I emphasize the fact that I am still alive; I did not die from the antibiotics. A small number of patients have died from intravenous catheter infections, but they did not die from the antibiotics themselves. Both the IDSA and the CDC are guilty of this inference and for smudging the distinction between expiring from a catheter infection and expiring from use of long-term antibiotics.
If one considers the fact that patients are being forced into administering their antibiotics themselves due to IDSA's influence upon the insurance industry's Lyme treatment policies and benefits, one may certainly see that the incidence of catheter infections might decrease if Lyme patients were being properly served by their insurers.
In addition, Lyme disease symptoms are not "vague" at all; they are highly indicative of infectious and resulting inflammatory neurological and musculoskeletal involvement. Dr. Poretz's use of the word "vague" serves only as an irresponsible attempt to mitigate the suffering of Lyme disease patients, thus exposing the IDSA's feigned sympathy and understanding.
As shown in the examples of IDSA Practice Guideline authors' research above and below, IDSA researchers and authors have clearly demonstrated the persistence of Lyme disease infection. This statement by Dr. Poretz is nothing less than a lie. "Microbiologically implausible?" As leader of the so-called "pre-eminent" infectious disease organization in the U.S., could Dr. Poretz have inadvertently forgotten about the research published by its Lyme disease Practice Guideline authors? I think not.
IDSA and Dr. Poretz, in his capacity as President, are disseminating false and damaging information that is having a detrimental impact upon the health of Lyme patients in this country, whether such patients have been diagnosed or remain undiagnosed due to such fraudulent statements. I assert that the time has come for a Senate Hearing to be held to publicly expose and stop such damaging actions made by the IDSA, its former and current representatives, and its Lyme disease Practice Guideline authors.
For too many years, a handful of researchers associated with the Infectious Diseases Society of America (IDSA) have been at the helm of the Lyme disease research ship. The Lyme research ship steered by the IDSA has been carefully guided to avoid the desperate needs of patients and instead steered through the pleasant and gainful waters of ongoing research funds granted to a handful of researchers and scientists associated with IDSA. Research funds have been utilized mainly for preventive measures in the form of vaccine research development, which I agree needs to be pursued to some extent, to prevent future cases. However, the research has also focused mainly on acute (early) Lyme infection. In all these years of suffering for patients, this handful of IDSA-associated researchers has failed despicably to respond to the pressing priorities of chronically ill patients, namely, accurate diagnostic tests and research for effective treatment for chronic (late-stage) infection.
As the IDSA is evidently drowning under the scrutiny of Connecticut Attorney General Richard Blumenthal's civil investigation for possible antitrust violations in the formulation of IDSA Practice Guidelines for Lyme disease, the handful of IDSA Practice Guideline authors are desperately clinging to lifeboats to save their sinking research ship.
Most references to Lyme disease made by this handful of researchers are those made to early-stage Lyme infection, shortly following a tick bite. It is common sense to know that a more favorable outcome exists for those who receive diagnosis and treatment in an efficient and timely manner. The actual problem exists with not "some" patients, as is stated by IDSA, but with thousands of patients who literally go for years without diagnosis and treatment. Such delay in diagnosis and treatment is a direct result of the use of the IDSA Lyme disease Practice Guidelines by physicians who mistakenly look to this powerful and influential organization as the Wizard of Lyme.
It is time to focus on the patients, who have been neglected for many, many years, and forced to journey through abusive encounters with infectious disease physicians who take their marching orders from IDSA. The Wizard of Lyme has disappointed us in its false pretense as the all-knowing authority on Lyme disease. The trust of the Lyme patient community has been betrayed and needs to be restored, so that these desperately-ill people may feel confident to receive proper medical care, as is unquestioningly afforded to cancer, tuberculosis, syphilis and chronic sinusitis patients.
In all these years, the IDSA has had the opportunity to pursue research that would benefit patients; however, it has avoided such research that could have made progress with testing and treatment for those with chronic infection. The IDSA has initiated a campaign for its members to object to ALL legislation, whether federal or state, initiated by patient advocates.
It is, in my opinion, inhumane for the IDSA representatives/authors to throw overboard without a life jacket all chronic Lyme disease patients by diagnosing thousands, whose medical history they have never reviewed and whom they have never examined, with every disease or syndrome but Lyme disease infection. In this regard, the IDSA is acting irresponsibly and violating state medical board procedures. The IDSA should cease from making distant diagnoses of other physicians' patients whom they have never examined.
The IDSA has very strong and continual objections to long term antibiotic therapy, yet not once in all these years has this sympathetic and understanding organization of 8,000 specialists offered any effective alternative to the Lyme patient community. It is for this reason that I urge you to hear and pass this bill, so that the Lyme patient community and their treating physicians, those whom the patients choose to trust with their healthcare, can finally have some input into efforts regarding this complicated infection.
The Infectious Diseases Society of America has continually claimed to be an understanding and sympathetic organization. This is an inaccurate description of the IDSA membership. As an example, I mailed a letter and questionnaire to eighty-four (84) infectious disease specialists throughout the State of Arizona. The letter and questionnaire asked each ID physician if our organization could place their name on a referral list for treatment of chronic Lyme patients. Out of 84 questionnaires sent, we received only five (5) responses. Each of the five responses told us that they had either slight or no experience with treating Lyme disease, that there was no such thing as chronic Lyme disease and no, we could not place them on our referral list. (So much for feigned sympathy and understanding.)
The deadly consequences of the IDSA directing its membership to deny and ignore chronic Lyme disease patients is easily understood. If chronic Lyme patients seek help from 8,000 infectious disease specialists across the United States, then the majority of those patients desperately seeking help will be rejected and turned away. The diagnosis will be delayed, no treatment will be forthcoming and the infection will spread throughout the patient's body with irreversible damage over a period of years, just as occurs in tertiary syphilis. I am not
referring to "some" or "a few" patients in this very real scenario; I am referring to the majority of patients. Such majority will eventually end up on disability costing our government millions of dollars in the long run. Why don't we just diagnose and treat the patients as they present to the doctor's office? This would be a great question to ask the IDSA Practice guideline authors during an investigative Senate hearing.
The following published research abstracts and excerpts are provided as a basis for the references to chronic Lyme disease made in S. 1708. Please note that, although the IDSA objects to the existence of "so-called chronic Lyme disease," it is apparent by the following research that their own Practice Guidelines authors have documented the existence of persistent, chronic Lyme infection. It is a blatantly false contradiction and misleading misinformation that is being disseminated to 8,000 member physicians and more, resulting in the needless destruction of families nationwide.
This is an abstract from a published article co-written by Allen C. Steere, one of the authors of the 2000 and 2006 IDSA Practice Guidelines, in the New England Journal of Medicine, Nov 22; 323(21): 1438-44, which refers to a study of Borrelia burgdorferi:
"These chronic neurologic abnormalities began months to years after the onset of infection, sometimes after long periods of latency, as in neurosyphilis…The typical response of our patients to antibiotic therapy supports the role of spirochetal infection in the pathogenesis of each of the syndromes described here… The likely reason for relapse is failure to eradicate the spirochete."
The following is from another published article by Dr. Allen C. Steere:
Steere, AC., 1995, Musculoskeletal manifestations of Lyme disease. American Journal of Medicine, 1995, 88:4A-44S-51S.
"…a 1-month course of oral antibiotics may not always eradicate viable spirochetes."
From Raymond J. Dattwyler, another author of the 2000 and 2006 IDSA Practice Guidelines:
Dattwyler, RJ., et al., 1988, Seronegative Lyme disease. Dissociation of specific T-and B-lymphocyte responses to Borrelia burgdorferi. New England Journal of Medicine, 1988, 319(22): 1441-6.
[From the abstract:] "We studied 17 patients who had presented with acute Lyme disease and received prompt treatment with oral antibiotics, but in whom chronic Lyme disease subsequently developed."
This scientific published research by Drs. Klempner, Steere and Dattwyler, members of the esteemed IDSA panel of Practice Guideline authors, does not support the IDSA hypothesis that chronic Lyme disease does not exist. The IDSA Practice Guideline authors demonstrated that chronic Lyme disease is caused from persistent bacterial infection. So, the IDSA Practice Guideline authors ignored their own published research in the formulation of their 2000 and 2006 guidelines for the treatment of Lyme disease.
It is inappropriate for the IDSA to disregard its own members' research. This flagrant disregard for research performed with grant funds shows irresponsibility and the inability to be trusted with public monies. Research funds must be utilized appropriately for the benefit of sick and dying patients instead of being misused to promote one organization's agenda. S. 1708 will establish a tick-borne disease advisory committee that will provide more balanced direction into how public research funds are utilized, taking the monopolistic control away from the IDSA. The Lyme patient community and Lyme-treating physicians do not mind sharing the roundtable with the IDSA; however, Lyme patients and treating physicians must be assured their rightful seats at the discussion table.
The Lyme patient community is taking responsibility for their health and what remains of their shattered lives. The time is long overdue for the Infectious Diseases Society of America and its Lyme disease Practice Guideline authors to abandon their pseudo-paternal position, step aside and allow other qualified, credible researchers and practicing physicians to take a turn at the helm to guide the ship in a balanced course that will allow more progress to be made on behalf of those suffering from debilitating Lyme and co-infections.
I appreciate your consideration of the position I have outlined in support of S. 1708. On behalf of Lyme disease patients, please hear, support and pass S. 1708, to provide an open forum with fair and balanced medical opinions and perspectives through balanced research and the establishment of a tick-borne disease advisory committee as outlined in the Senate Bill 1708.
Sincerely,
Tina J. Garcia
