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Jim, could you make a note at the top of your detailed letter that Bettyg has a broken up version for us neuro-lymies to be able to read; thanks Jim. Those effected like me, will look for my version so they can comprehend it.


OUTSTANDING LETTER! You made so many wonderful points, and I didn't want any of them buried in solid block text so we would NOT miss them!

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Originally posted by jimw:
Hi,

Here is our letter to Senator Kennedy in response to the IDSA letter sent to him, quoted on another thread here.

It was less than truthful and cannot be left without challenge. Many folks think we have no business butting into US politics but it affects so many people in so many countries...

April 7th, 2008

The Honorable Edward Kennedy
United States Senate
Washington, DC 20510

Re: Lyme and Tick-borne Disease prevention, Education, and Research Act of 2007 (S.1708)

Dear Senator Kennedy:

This is in response to a letter dated March 21st, 2008 sent to you by Donald M. Poretz, president of the Infectious Disease Society of America (IDSA). I've enclosed a copy of that letter for your easy reference.

The actions and comments of the IDSA reverberate far beyond the borders of the United States including into Canada, affecting the life outcomes of countless numbers of Canadians so we feel compelled to write.

The IDSA indicate they are the pre-eminent authority on the treatment of Lyme disease in the United States.

This fact is hotly disputed by the sheer numbers of victims treated outside the control of the IDSA.


The claim that the IDSA consider themselves the pre-eminent authority seemingly is based on their ability to control access to research funding, publishing, and positions as editorial reviewers for leading medical journals.


Furthermore the IDSA deem the term `chronic Lyme disease' to be inaccurate.

Instead they prefer to diagnose anyone still suffering the ravages of the disease after a short period of antibiotic therapy as someone suffering from `post Lyme disease syndrome' for which there is no diagnostic test nor treatment.

They cite as evidence contentious Lyme disease serology.


The Johns Hopkins University School of Medicine in 2005 published results of a two-year study focusing on the accuracy of serology tests recommended by the IDSA.

The results of that study showed serology alone is not a valid tool because it is not accurate.

That research was not referenced anywhere in the IDSA Lyme Clinical Practice Guidelines.

In fact the IDSA failed to acknowledge most research that did not support their positions.


The IDSA's letter to you also did not mention a widely read published paper from the University of California, Davis, enclosed for your easy reference that further undermines much of the foundation of IDSA Lyme Clinical Practice Guidelines.

This article is one of a lengthy list of papers from the world-renowned U of C lab.

'Persistent Bacterial Infections' edited by Nataro et al in 2000, contains an entire chapter on Lyme Disease.

It is unconscionable that the IDSA has known about this work for a decade and yet makes no reference to the findings.

By the year 2008, Barthold's lab has shown without a doubt that Lyme Borrelia can survive heavy antibiotics and still induce infection.

It also showed Lyme borrelia escape detection once disseminated into the body, invalidating the testing protocol promoted by the IDSA.

One can only guess as to why the IDSA made no mention of this in their letter to you.


Tens of thousands of patients world-wide have been trying to tell the IDSA for two decades they are still sick with a treatable illness after a short-term antibiotic regimen.

We victims knew this because when we resumed antibiotic therapy we greatly improved. This was not a simple anti-inflamatory response.

The IDSA's answer to this was to advise doctors to look at psychiatric issues within this group of patients.


The IDSA implies in their letter that most people are being diagnosed with chronic Lyme ``based on laboratory tests that are neither evidence-based nor approved by the Food and Drug Administration'' (FDA). That is misguided.


Here is what the FDA says about the tests recommended by the IDSA, ``In summary, serologic testing is not useful early in the course of Lyme disease, because of the low sensitivity of tests in early disease''.

The aforementioned U of C, Davis paper shows that serology is not good for the late disseminated stage of the disease either, or if a person has been exposed to any antibiotics before testing.


The U.S. labs that are properly detecting Lyme in these chronically ill people are fully accredited, certified and proficiency tested labs using today's best technology, not an outdated algorithm devised 15 years ago such as that used by the IDSA.

It seems the IDSA failed to mention that also.

The IDSA attempt in their letter to decry the use of antibiotics implying the antibiotics have little value.

The only valid research done in that regard was done at Columbia University and it clearly showed a benefit.

Most researchers realize the limitations of the tools available to measure the subjective but serious, amazingly consistent persistent symptoms of chronic Lyme disease.

It never ceases to amaze the victim how willing the IDSA are to place the benefit from continued antibiotic therapy into the realm of a psychiatric issue.

If you look at the treatment recommendations for rheumatic fever or acne you'll see that long-term antibiotics have never been an issue and in fact many who have had rheumatic fever are given a life-time prescription for antibiotics.

They would never consider limiting the treatment of a victim of tuberculosis but they have no problem limiting the treatment of thousands of victims of Lyme disease condemning these people to a life of hell.


We as Canadians have no right to impose our opinion and we thank you for your time but please look at our letter in the light of an illness that knows no borders.

Your decisions affect many people in many countries of the world.

You are a father as I am. My daughter, also a victim of Lyme will go through life with a permanent pacemaker in her heart, but thanks to doctors who refused to follow the IDSA she was given two years of antibiotics.

Her improvement did not come until long after the treatment period recommended by the IDSA. She is otherwise very healthy now and has been off all antibiotics for three years. She is employed and pays taxes.


Please support the Lyme and Tick-borne Disease prevention, Education, and Research Act of 2007 (S.1708).


Yours truly,


Jim M. Wilson
President

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