Online Petition Lyme Dis. Assoc about new IDSA 'guidelines'

Discussion in 'Lyme Disease Archives' started by victoria, Oct 24, 2006.

  1. victoria

    victoria New Member

    I've just signed this petition, hoping everyone who reads this will as well. It's easy to add your name online:

    New IDSA Guidelines Effectively Stopping Treatment for Lyme Patients:

    The new IDSA guidelines published in October by the Infectious Diseases Society of America (IDSA) are already causing patients to be denied treatment for chronic Lyme disease.

    The guidelines have recommended against any long term treatments, listing numerous specific antibiotic classes not to be given, listing alternative treatments and even supplements not to be offered to Lyme patients.

    Clinical discretion has been removed from treating physicians. We ask that you, your families, and friends across the country sign this petition immediately. Lyme treatment is at stake.

    Other actions will be forthcoming. Please watch this site for details as our campaign for patients' right to be treated unfolds.


    We, the undersigned, are gravely concerned by the new Infectious Disease Society’s (IDSA) guidelines on Lyme disease. These guidelines call for absolute reliance upon either the presentation of an Erythema migrans rash or positive serologic blood tests to diagnose Lyme disease and recommend severely limited courses of antibiotic treatment when either a rash or a positive test are present.

    They take the place of a longstanding policy of deference to the clinical discretion of the treating physician in both diagnosing and treating the disease.

    We find it most troubling that the new IDSA guidelines fail to explain the scientific justifications for their absolute reliance upon the rash and current blood testing to diagnose the disease in light of the numerous studies and medical opinions concluding that the rash is either not discovered by or present in many infected persons and that the serologic testing methods recommended by the IDSA are inherently unreliable because they do not even remotely approach a dispositive level of accuracy.

    Widespread adoption of these guidelines by practitioners, insurers, and government entities will, therefore, cause real and egregious harm to many patients by inhibiting physicians who otherwise would be free to clinically diagnose and treat this disease.

    These guidelines fail to meaningfully address the needs of patients with chronic Lyme disease, who are now relegated to the pile of diseases with unknown etiology, like CFS and FMS, and who are provided with only symptomatic relief, while the underlying infectious disease is allow to progress unabated.

    Studies have shown that patients with chronic Lyme disease suffer a degree of debility equal to that of patients with congestive heart failure. Failure to address the underlying infectious disease etiology keeps these patients sick, which is inhumane and immoral.

    There are no chronic Lyme disease patient studies supporting symptomatic therapies, which presumably would be necessary for life at considerable cost to insurers and society. Moreover, the IDSA rejected out-of-hand the requests by patients and their treating physicians to participate in the guideline development process.

    No medical society should be able to dictate patient healthcare through exclusionary guidelines that ignore considerable scientific evidence and fail to meet the basic goal of medicine-to improve the quality of life of the patient.

    Hope you all sign this, it should be important to each and everyone of us truly!

    All the best,

  2. jarjar

    jarjar New Member

    That was so easy to do, I hope everyone takes a few seconds to copy and paste to your browser and sign it!
  3. jarjar

    jarjar New Member

    This letter is from a lady that is head of the Florida Lyme Advocacy that has given permision to reprint to encourage others to get the word out to friends to sign the petition.


    To my personal family and friends, I hope you will read the following and take 2 minutes to sign on to a petition that has to do with my life and those living with chronic Lyme disease, literally.

    As many of you know, I lost my life savings and the greater part of my 30's to fighting disabling, progressive Lyme infection and its co-infections. Because I was mis-diagnosed and went undiagnosed for so long (the norm); I was bedridden for 2 years, and now spend every day smiling, pushing through and many days scraping through nerve pain
    that feels like I am burning to death from the inside out...this is the permanent nerve damage that will always be a part of my life, along with organ damage and new developments that threaten to one day disable and even end my life prematurely.

    Now, the Infectious Diseases Society of America who has clearly documented financial ties to the insurance industry and is currently partnering with the CDC and pharmaceutical industry has successfully published guidelines being endorsed by the CDC that effectively shut down treatment and access to the very medications that turned my
    disabling neuropathies, demylinating nerves, blurred vision and other systemic deterioration into a slow turn toward recovery.

    The reasons are far too convoluted and historically deep to fully explain why the CDC and IDSA are going out of their way to cover up a
    disease that they have allowed to become epidemic. Some day I can tell you the entire ugly truth if you care to know.

    In essence, however, this petition asks that the clinical expertise of world leading experts treating later-stage, chronic, life threatening
    Lyme disease and its co-infections "in the trenches" to be the guiding force in what is best for each individual patient. It is asking that
    the doctors who know the most about this scope of disease and the most about their patient be allowed to provide all the options available as
    our legal right to informed consent, as well viable treatments that have pulled people back from psychotic state of brain involvement, out
    of wheelchairs, off walkers and back from near death. The treatments that, without which, sadly thousands of died.

    If we do not have these IDSA guidelines dismissed, revised or formally rejected by the CDC, I and millions of Lyme sufferers around the world
    will listen to our doctors who have work tirelessly with us to save our lives, tell us they have the medications and treatments to help us
    walk, work and live; but cannot give them to us any longer. The few experts left who have written off our balance bills, lost their licenses and livelihoods to politically backed witch hunts will have their hands tied from offering clinical expertise, diagnosis and

    In a nut shell, physicians who have NEVER treated later-stage, Lyme disease (because they DON'T EVEN BELIEVE IT IS REAL!) are now dictating what medication and treatment options I can have; never
    meeting me, knowing this disease or having knowledge of newer, better treatments that have evolved as recently as the last year!

    PLEASE!!!!!!!!!!!!!!! Read the message from our national president who nearly lost her own daughter to this disease and click two times; once
    to go the LDA web site and once more time to sign on.

    Without my medication, my disease will move forward as if my life, my courage, and my desire to live doesn't matter. So, too, hundreds of
    thousands of newly-infected to come will never be treated. They will suffer HORRIFIC, unnecessary pain, disability and even death. Parents
    will lose their children, children will lose their dreams, and undiagnosed and untreated Lyme infected will donate infected blood to
    pass our disease to you and your loved ones and friends.

    What is occurring in the Lyme community at the hands of the CDC, Public Health Dept's nationwide, IDSA, and insurance industry is nothing short of legalized homicide. I have the thousands of patient records and photos to prove it...all the lives gone when treatment existed.

    We in the Lyme community are reliving the tragic history of early AIDS patients. PLEASE SIGN THIS PETITION. We deserve to live after all we
    have suffered. We paid our insurance in good faith that our country would value our lives God forbid we ever got sick. We have learned
    quite the opposite.

    Please help us stop the negligence, fraud and human atrocities that are mounting in epidemic proportion among the Lyme disease community
    in our nation as well as worldwide.

    Thank you so much,

  4. victoria

    victoria New Member

    I 'd just heard that my son's doctor can NOT now give abx to any pt who did not show up with all bands positive on Western Blot that are considered relevant by CDC, DESPITE what their 'clinical picture' is or if they were doing better after taking abx. He had come under review by the state medical board, was one of the restrictions placed on him.

    (Thankfully my son did show positive on all bands, so no problem in continuing his treatment.)

    His doctor has now formed a research foundation; I think this is the only way pts eventually will be able to be treated legally for chronic lyme, is by signing papers that they realize whatever protocol beyond a month's worth of abx is research and no promises of a cure.

    Well heck, there's no course of treatment for cancer that promises 100% cure and doesn't cause possible side effects...

    And as we all know, of course, NO test is 100% reliable one way or the other. This is really sad!


  5. jarjar

    jarjar New Member

    Very interesting.....has this subject been brought up on lymenet as I know they talk about your doc from time to time.
    If not you should post this topic.

    The people are going to have to stand up and say enough is enough.

  6. victoria

    victoria New Member

    it's really disheartening for a couple of people I know who see him, fit the 'clinical picture' and have had some bands show up positive AND can feel the difference abx makes, both in herxes and positive feelings...

    they are now left hanging, basically, at least until August of next year.


  7. victoria

    victoria New Member


    Jill A. Livengood, Robert D. Gilmore Jr.*

    Division of Vector-borne Infectious Diseases,
    3150 Rampart Road, CSU Foothills Campus,
    Fort Collins, CO 80522, USA

    Received 13 June 2006; accepted 30 August 2006


    Human infection by Borrelia burgdorferi, the etiological agent for Lyme disease, can result in serious acute and late-term disorders including neuroborreliosis, a degenerative condition of the peripheral and central nervous systems.

    To examine the mechanisms involved in the cellular pathogenesis of neuroborreliosis, we investigated the ability of B. burgdorferi to attach to and/or invade a panel of human neuroglial and cortical neuronal cells. In all neural cells tested, we observed B. burgdorfer in association with the cell by confocal microscopy.

    Further analysis by differential immunofluorescent staining of external and internal organisms, and a gentamicin protection assay demonstrated an intracellular localization of B. burgdorferi.

    A non-infectious strain of B. burgdorferi was attenuated in its ability to associate with these neural cells, suggesting that a specific borrelial factor related to cellular infectivity was responsible for the association.

    Cytopathic effects were not observed following infection of these cell lines with B. burgdorferi, and internalized spirochetes were found to be viable.

    Invasion of neural cells by B. burgdorferi provides a putative mechanism for the organism to avoid the host's immune response while potentially causing functional damage to neural cells during infection of the CNS.

    Keywords: Borrelia burgdorferi; Cell invasion; Neuroborreliosis

    Corresponding author. Tel.: +1 970 221 6405; fax: +1 970 221 6476.

    Copyright © 2006 Elsevier B.V.