Unite in fight against Lyme disease

Discussion in 'Fibromyalgia Main Forum' started by tansy, Dec 3, 2005.

  1. tansy

    tansy New Member

    By Dr. Steven E. Phillips
    Friday, December 2, 2005

    A Florida State quarterback is found half-naked and disoriented in
    downtown Tallahassee. Pop singer Daryl Hall cancels part of his national
    concert tour. Author Amy Tan is writing a new book about it.
    The picture is clear: Lyme disease has hit the front burner.

    Lyme disease is a major public health problem and growing crisis.
    It's the most prevalent bug-borne illness. According to the Centers for
    Disease Control and Prevention, new cases are reported in about 20,000
    people yearly and this number represents a 10-fold underestimate.

    Lyme disease is caused by a complex bacterial agent carried and
    spread by ticks. The Lyme bacteria have the ability to evade immune
    destruction, entrench themselves deep within tissues and migrate
    throughout the body with impunity causing a multi-system illness that
    can be baffling to many physicians.
    The result is that one tiny tick bite can cause innumerable
    symptoms running the gamut from muscle and joint pain to heart disease
    to neurological and even psychiatric illness.

    Lyme patients may be
    misdiagnosed as having other serious diseases such as lupus, multiple
    sclerosis, rheumatoid arthritis and psychiatric disorders.

    The take-home
    message is Lyme disease may be hard to diagnose and difficult, if not
    impossible, to fully eradicate if not caught early.

    Why is that?

    First, there is no single reliable diagnostic laboratory test. The
    common two-tiered blood test cannot be solely relied upon for diagnosis.
    The initial ELISA screening test can give up to 50 percent false
    negative results, and just as disheartening, many laboratories interpret
    the second Western Blot test by highly restrictive CDC criteria that
    miss many cases.

    Better tests are described in the medical literature, but haven't
    seen the light of day. So some patients seek more sophisticated testing
    by approved reference laboratories - labs within a single state that get
    samples from around the country - but which often don't take their
    insurance companies and frequently pay for their tests out-of-pocket.
    Furthermore, a person with Lyme disease may be co-infected with
    other organisms, and "co-infections" often require different antibiotic
    therapy compared to Lyme.

    Second, there is no universally accepted treatment. During chronic
    infection, the organism burrows deep into tissues that some antibiotics
    can reach only marginally. This is but one of many reasons why a
    two-to-four-week treatment cannot eliminate chronic infection.

    The consensus opinion of the International Lyme and Associated
    Diseases Society is that an individualized treatment approach is
    necessary based on clinical judgment.

    ILADS is a multi-specialty medical society comprised of virtually
    all sub-specialists who treat Lyme disease, including infectious disease
    specialists, neurologists, rheumatologists, psychiatrists,
    endocrinologists and internal medicine physicians. We've published
    diagnostic and treatment guidelines in peer reviewed infectious disease
    medical literature, which stand in stark contrast to the guidelines of
    some infectious disease specialists who reject voluminous medical data
    documenting persistent infection and co-infection.

    What should be done?

    We, the clinical doctors who man the frontlines of treatment,
    extend an olive branch to our colleagues with divergent opinions to work
    together to develop practical diagnostic and treatment protocols.
    We believe it is essential for patients with Lyme disease symptoms
    to be tested for multiple tick-borne disorders. We know better tests
    exist and recommend the entire medical community push for them.
    We encourage the education of all medical personnel about the array
    of Lyme disease symptoms and its related infections in order to increase
    the number of health care providers who can recognize and treat these

    In the early days of the AIDS epidemic, activists screamed for
    attention to get medical care. We hope Lyme patients are not forced to
    follow the same path, but we will not be content until Lyme disease is
    yesterday's news.

    Physician Steven E. Phillips of Wilton, Conn., is president of the
    International Lyme and Associated Diseases Society
  2. windblade

    windblade Active Member

    VERY valuable information. The media has so downplayed the seriousness of the situation.

    I'm so glad that Amy Tan is writing a book, or has written about it. With undiagnosed lyme she had so many cognitive problems that she couldn't remember what she had just written, and couldn't hold the plot in her mind.

    She is one of our greatest novelists! If you hear anything about her writing on Lyme, please post it - I am so interested in how she was cured.

    And thanks for all the great info. you post! I've learned a lot from them.
  3. Countrymom

    Countrymom New Member

    Great article tansy, thanks for posting this,
  4. victoria

    victoria New Member

    since the FSU quarterback was dx'd last June...

    there were a lot of angry letters from MDs to papers in Florida at the time of the Lyme dx, protesting that Lyme wasn't there, and that he couldn't have it, etc...

    I'm really wondering what their reaction is now that he is getting better with proper treatment...

    Hopefully some of them will have their eyes opened!

    all the best,
  5. hopeful4

    hopeful4 New Member

    Thanks for posting this article about Lyme and keeping us informed.


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