Lyme Article

Press Release Source: Lyme Disease Association Historic Move by CT Attorney General to Investigate IDSA Guidelines Process Gives Hope to Thousands of Lyme Disease Patients
Thursday November 16, 8:00 am ET
Statement from Pat Smith, President, Lyme Disease Association HARTFORD, Conn.--(BUSINESS WIRE)--The national non-profit Lyme Disease Association (LDA), representing more Lyme disease patients than any organization in the United States, applauds Connecticut State Attorney General Richard Blumenthal for beginning an investigation into the Infectious Diseases Society of America (IDSA) Lyme disease guidelines development process. In an unprecedented move, the Attorney General's office filed a Civil Investigative Demand (CID) to look into possible anti-trust violations by the IDSA in connection with exclusionary conduct and monopolization in the development of the Lyme guidelines.

Although unprecedented, the LDA feels this action is vitally necessary to protect the welfare of chronic Lyme patients nationwide whose treatments have been impacted by the stance taken by the IDSA. Their guidelines deny the existence of chronic infectious Lyme disease and list as "not recommended" most of the conventional medical treatments prescribed by physicians as well as alternative treatments often chosen by patients for any Lyme manifestation. Even some nutritional supplements should not be an option according to IDSA.

Clinical guidelines now drive the standard of care, and these IDSA guidelines have already been published on the CDC website. They are being used to deny treatment reimbursement and will have a continued chilling effect on the small numbers of treating physicians, since clinical discretion is not recommended in the guidelines.

The October 2006 guidelines do not acknowledge that a complex bacterium such as the Lyme disease spirochete could possibly survive in the body and the brain, evading the immune system and short-term courses of antibiotics, nor do they take into consideration any other professional diagnostic or treatment guidelines such as those published by the International Lyme and Associated Diseases Society (ILADS), which discuss chronic disease diagnostic and treatment modalities. The IDSA also refused to allow patient or chronic disease-treating physician input into the guidelines process through the LDA and ILADS, respectively, although both organizations requested to be a part of the process.

The national LDA and its affiliates Time for Lyme (CT) and the California Lyme Disease Association and ILADS, a professional medical organization, had appealed to the Attorney General on behalf of patients and treating physicians. We are encouraged by the issuance of the CID, and we hope that this will lead to actions that will guarantee patients the right to be treated and support physicians' right to treat using clinical discretion.
I'm glad to hear that. Those guidelines were very restrictive. Medicine by political committee can get short sighted.


As for your techincal information in an earlier post --- Pace, this is all over my head. What does seem great is that the magnesium is helpful. Are you saying that Lyme uses the VLDP to make its shell?

As for not adding in choline, you could follow the suggestions of Joeseph Burrascano, Jr., M.D. He suggests Lyme patients try SAM-e and Acetyl L- carnitine. This should increase the production of acetylcholine. He states

�ACETYL-L-CARNITINE- this is taken along with SAM-e. This combination can result in noticeable gains in short term memory, mood and cognition. The Acetyl Carnitine also is said to help heart and muscle function. Doses: Acetyl-L-carnitine- 1500-2000 mg daily on empty stomach. SAM-e- 400 mg daily with the acetyl-carnitine. Available in most vitamin stores. Positive results may appear as early as 3 weeks; use for 2 to 3 months. May be repeated if needed; generics are okay.�

http://www.lymenet.org/drbguide200509.pdf

ADVANCED TOPICS IN
LYME DISEASE ----
DIAGNOSTIC HINTS AND TREATMENT
GUIDELINES FOR LYME AND OTHER
TICK BORNE ILLNESSES

Fifteenth Edition
Copyright September, 2005�
pace is there a link for this?

b
Wow Pace,

This is fascinating!!! and wonderful

I wonder how much precedent there is for this. I have never heard of anything like it.

Sounds like it may be the start of a revolution.

This will be an interesting one to watch for sure.

Great catch!

http://home.businesswire.com/portal/site/google/index.jsp?ndmViewId=news_view&newsId=20061116005449&newsLang=en

This atty general really is an advocate for Lyme sufferers. I heard he even wrote to an insurance company in behalf of one of his constituents and afterwards, the insurance co started paying for a a the needed medication

I'm going to write to thank him for what he's doing. If you want to do the same:

Mr. Blumenthal's E-mail: attorney.general@po.state.ct.us

Maybe we should contact our State Attorney General's, too.

Pace
Thanx for posting that. I printed out 2 copies of it. One for my own records, and the other for my Primary Care Doc. The saber rattling of legal action has such a nice and effective ring to it.
Doesn't it though! It's about time. Over the course of many years, I've found out the only voice the medical profession listens to is a legal voice with teeth!

Pace
ILADS already has a subpoena to present their contrary evidence. The ILADS doctor's were furious that they were completely left out of the treatment guidelines process as were lyme advocacy groups. The IDSA board has only 5 members who've even treated a lyme patient. It's an outrage. The AG filed this investigation under the "anti-trust" statutes.

Pace
thanks pace

i agree.. citizen support/pressure is exactly what we need

even if the outcome ultimately isn't favorable, its a step and will heighten awareness of the problematic monopoly held by the medical establishment, and the need for perhaps legislative change and federal funding for alternative trials


interesting, thanks.. please keep us updated if you can :-)