Good news for lyme patients

Discussion in 'Fibromyalgia Main Forum' started by jarjar, Nov 16, 2006.

  1. jarjar

    jarjar New Member

    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'
  2. victoria

    victoria New Member

    Just a PS: there is a petition to get the IDSA's guidelines reviewed...

    Those of you who have been affected by Lyme or think you are, or know those who have been (like many members of this board both past and present), I hope you all will sign it. Your addresses and names are not made public on the website, only as valid signatures when it gets presented....

    all the best,

  3. victoria

    victoria New Member

    The Lyme Disease Association says they are up to 16,000 signatures but need as many as possible... please, I hope some of you are signing this, it's important!

    all the best,

  4. victoria

    victoria New Member

  5. hugs4evry1

    hugs4evry1 New Member

    I signed and sent it on to Hubby to sign...


    Nancy B
  6. apl

    apl New Member

    I signed the petition too.

    I meant to post here once I sent the petition link to my husband, and also to a friend of ours that has Lyme. Things have just been too busy and stressful lately, but I'll be sure to let them know about it soon!

    I'll post more once I've spread the word.
  7. Juloo

    Juloo Member

    They're over 17,500 now. I'm taking a printout to one of my caregivers tomorrow -- she has Lyme also. And I'll send the link to my husband (he was also diagnosed w/Lyme).
  8. fight4acure

    fight4acure Member

    At least they are taking some baby steps finally. I wish they were talking more about a cure for those diseases that result as a result of having Chronic Lyme Disease.

    Thanks for posting this!

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