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Patient Advocate Lucy Barnes Outlines
To the Honorable Leaders of the
I am contacting you today because I'm afraid if you don't get the Lyme
and Tick Borne Disease bills (HR-741 & S-1708) out of the committees where
they are currently "stuck" and get them passed this session, we are
going to lose more chronically ill patients to treatable, but very serious,
infectious diseases.
I respectfully request that you push aside any pre-conceived notions you
have about the Infectious Disease Society of America and the NIH for a moment
and listen to what patients with tick borne diseases are facing on a daily
basis. They desperately need your
help because the situation has gone far past intolerable at this point, it is
bordering on criminal. Citizens are
counting on you to listen and to help them.
I am writing to you on their behalf.
Please note-
If everything were going smoothly in
1. The head of the NIH Lyme
Disease program (Edward McSweegan) has failed patients, doctors and the 2. The Infectious Disease Society of America (IDSA), who recently proclaimed itself to be a "pre-eminent authority" in a letter to Congress, when in actuality members don't treat chronic Lyme disease at all, failed to mention they are currently under investigation by the Attorney General for fraud, anti-trust violations, monopolization, and exclusionary conduct directly related to their Lyme Disease Treatment Guidelines. In addition, doctors who don't tow the IDSA line have been targeted and persecuted over the years for stepping out of the restrictive IDSA box and following their oath to, "first do no harm". 3. There IS such a condition as chronic Lyme disease, in spite of what the IDSA is currently trying to get you to believe. It has been documented extensively over the years and the IDSA and others have been receiving millions, if not billions, in grant monies to study it. If it didn't exist, the Red Cross wouldn't exclude those with chronic Lyme from donating blood and insurers wouldn't refuse to provide life insurance for those with the disease. Some patients suffering with chronic Lyme have been provided extended treatment. That treatment saves lives. Patients and their families (many now permanently disabled from the original delay in diagnosis and treatment) will NOT go away until they are sure others, especially children, are receiving adequate medical care. In addition, un-biased science, medical literature and clinical trials support antibiotic treatment. 4. The IDSA is so distressed by the possibility that researchers outside their tight-knit group will be allowed to sit at a table and present scientific evidence and recommendations to federal agencies which could prove them wrong, they are willing and continue to fight bills at state and federal levels and forfeit the much-needed $100,000,000.00 in research funding this bill would provide, just to keep from being exposed. 5 The IDSA is clinging to its own unsubstantiated and unproven theories, which are failing miserably in every direction. Tests miss 75% of people infected; the Lyme vaccine has been withdrawn from the market after prompting multiple law suits; sky-rocketing numbers of new Lyme cases have emerged; and inadequate treatment protocols have left people chronically ill, disabled and dying. They stand behind their failing practices in order to avoid being sued by hundreds if not thousands of people for illegal or immoral acts. By burying the bills in committee, members of Congress are unknowingly helping them conceal the truth, which could be considered aiding and abetting possible felonious acts. Obviously that is not your intention. 6. The IDSA's claim stating, "there are no convincing published scientific data that support the existence of chronic Lyme disease" is true, if you consider only their selected studies based on their own "unreliable" tests and you have financial ties that bind and/or conflicts of interest clouding your vision, as they certainly do. In reality there are thousands of studies the IDSA has ignored or dismissed which have one thing in common, they contradict the IDSA's theories. No patient WANTS to have antibiotic treatment without good reason and solid science backing the protocols; and no doctor wants to prescribe treatment if it is not required to save lives, as the IDSA would have you believe. That deduction is as absurd and preposterous as a person wanting to have chemotherapy if they didn't need it. Many patients on extended antibiotic treatment wouldn't need to be on that protocol had they not been subjected to the highly unreliable tests which missed their infection initially, or had not been restricted to an IDSA treatment protocol that was arbitrarily set years ago, with no scientific proof it has ever cured anyone. The fact remains, the treatment prescribed to patients via the IDSA guidelines was designed and promoted by them to be "cost-effective". According to Raymond Dattwyler, an IDSA Lyme Guideline author currently under investigation by the Attorney General for possible illegal practices, there were no studies backing the treatment duration recommended by the IDSA guidelines. He stated, "As far as duration of therapy [for Lyme disease], as Janet said, two to four weeks has been the standard, so usually three weeks seems to have been adopted, although I think that is somewhat arbitrary." So much for evidence-based science! (Department of Health and Human Services, Public Health Services, FDA Anti-Infective Drugs Advisory Committee Meeting, 64th Issue, Guidance Documents on Developing Antimicrobial Drugs. Thursday, July 30, 1998) 7. The IDSA often points out that some physicians are using "laboratory tests that are not evidence based and are not regulated by the Food and Drug and Administration". The fact is, only tests that are sold on the market need the FDA approval referred to by the IDSA in its letter, such as the tests promoted by their labs (or labs they owned before legal actions ensued). The labs preferred by patients and doctors alike are fully accredited and pass rigorous inspections. They have been approved by Medicare and all necessary regulatory agencies. The problem is the specialty tests and labs the IDSA objects to are superior to their FDA approved tests currently on the market and the superior test results are proving the IDSA theories wrong.
8. The IDSA has a habit of
using scare tactics in an attempt to make their point, stating things such as,
"long-term antibiotic therapy may be dangerous, leading to potentially
fatal infections in the bloodstream as a result of intravenous treatment."
What they fail to mention are quotes by the IDSA authors themselves who
have concluded, "B. burgdorferi [Lyme disease bacterium] does not acquire
resistance to antibiotics." IDSA
members also warn of the probability of complications such as septicemia
developing during IV therapy. They
fail to mention studies indicating 90% of cancer patient's IV catheters tested
showed that infectious organisms had colonized as a result of the catheters and
2% of the patients developed septicemia as a result.
Shall we deny cancer patients treatments because the medical procedures
or medications involved in their treatment may have associated risks?
No. Then why deny Lyme
patients the same life-saving treatment? 9. The IDSA contends Lyme disease is not a chronic condition and consists of nothing more than "non-specific symptoms such as muscle and joint pain, fevers, chills, fatigue, and difficulties with concentration or memory loss." However, the FDA, NIH, CDC and others certainly don't agree. For example, the FDA states, "Permanent damage to the joints or the nervous system can develop in patients with chronic late Lyme disease." (FDA. Dept. of Health and Human Services. CDRH Consumer Information. http://www.fda.gov/cdrh/consumer/lymedisease.html) The NIH also concluded there is more to chronic Lyme that the IDSA has shared with Congress, including fatalities. "Varying degrees of permanent joint or nervous system damage may develop in patients with late chronic Lyme disease. In rare cases, some individuals may die from Lyme disease and its complications." (NINDS Neurological Complications Of Lyme Disease Information Page. NIH. National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/disorders/lyme/lyme.htm) CDC studies have documented the following: "Chronic Lyme disease involves abnormalities in either the skin, the joints, or the nervous system. Abnormalities in the skin are rare, but include localized swelling especially in the ear lobe, arm pit, and nipple areas, and thinning of the skin on hands and feet [ACA presentation]… Chronic Lyme disease infection of the nervous system most often produces pain in arms or legs, along with weakness and/or numbness in the affected limbs. These problems are caused by Lyme disease infection of the spinal cord. With infection of the brain, a number of other problems can occur. These include headaches, severe fatigue, impaired vision, double vision, hearing impairment, facial paralysis, and difficulties with memory and thinking." Notice these government agencies all refer to "chronic Lyme disease", something the IDSA insists doesn't exist in its letter to you.
11. The IDSA guideline
authors have not only refused to recommend antibiotics necessary to successfully
address bacterial infections, they have further restricted access to any
treatment by recommending against the use of all alternative therapies,
including such common items as over-the-counter supplements (i.e. vitamins, etc)
to improve a chronically ill patient's overall health.
At this point patients are worried the next thing that will be denied
them by the IDSA will be the very air they breathe.
12. The actions of the IDSA
panel members, since the investigation was launched by the Attorney General into
their alleged illegal practices, are telling.
Several IDSA members have gone to other organizations ( For years the IDSA guideline authors have aggressively fought the inclusion of anyone into their small circle who wasn't of the same like pocket book. Their actions over the years, and here today, are highly questionable to say the least. Reasonable people must ask themselves, why would IDSA members continuously and aggressively lobby against bills, at both the state and federal levels, that would provide for more research funding (which they would be entitled to receive through grants also)? Isn't that similar to cutting off your nose to spite your face? Why would they exclude evidence, facts and important details from Congress? Why would they rather let the shameful situation facing people across the country continue unchecked than welcome assistance (both financial and scientific) with open arms? What's going on here?
Please realize if this bill isn't passed and the federal advisory
committee isn't assembled immediately, it could be decades before any progress
is made. I respectfully request your
consideration of the circumstances in question and ask that you immediately
bring the Lyme and Tick-Borne Disease Act up for a hearing to further shed light
on the current abuses outlined above. We
can't afford to wait. Millions of
lives are at stake. People with tick
borne diseases are not only fighting a bacterial infection, they are fighting a
war that only you have the power to stop. Please
do! Sincerely,
Lyme Disease Education and Support Groups of AfterTheBite@toad.net |
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