LYME DISEASE ASSOC/ LDA NEEDS Patient Statements by (Sat) 7/08/06

Discussion in 'Fibromyalgia Main Forum' started by victoria, Jul 6, 2006.

  1. victoria

    victoria New Member

    I got this from one of the lyme lists I'm on...

    I know there are some here who can contribute stories -- Please read and do if you can?
    From Pat Smith, President Lyme Disease Association

    The LDA needs statements by July 8, 2006 from Lyme patients for a very important meeting. Patients (or parents) can write if they meet any of the following criteria:

    They (or children) must have been denied a diagnosis and/or treatment/reimburse ment at some point in their disease due to the fact they do not meet CDC surveillance criteria (CDC criteria = EM rash OR positive ELISA followed by positive Western Blot plus major system involvement)

    They (or children) have been denied treatment based on IDSA (Infectious Diseases Society of America) Guidelines which only address short term treatment

    They (or children) have seen a large number of doctors to get a correct diagnosis and treatment (state approx. number over what time period)

    They must travel two or more hours (one way) to get Lyme treatment (include how many hours, travel to another state, fly there, stay overnight)

    Please include
    1. Information about how the above situation(s) applies to you (or children).

    2. Misdiagnosed as _________disease.

    3. Permission to LDA to use and share the material for its purposes (You must include this).

    4. Letter writer's name, address, state, email (no need to name anyone else)

    5. The entire statement in ONE page.

    6. By July 8, preferably email back to Lymeliter@aol. com in a clean email, DO NOT HIT REPLY BUTTON, send clean new email only.

    7. Or fax to the LDA at 732 938 7215.

    DO NOT include doctor names. Do not write your entire story. This will not help us.

    Sample of type of content
    I have probably had Lyme disease for 10 years. I traveled to 10 doctors for the first five years to try and get a proper diagnosis. I was told I did not have Lyme disease because I had a negative test, although I did have many symptoms. I did not have the bull's eye rash either. They did not know what I had but they said it was not Lyme.

    I finally found a doctor who is 300 miles away in a different state. That is ten hours I need to be driven by someone else to get treatment for Lyme, since I cannot drive that long.

    He diagnosed me clinically and I have been on treatment and my symptoms improved greatly. He also diagnosed me with several co-infections. No one even mentioned them before.

    Unfortunately, my insurance company often refuses to pay for my treatments because I don't meet the criteria for Lyme disease.

    If I cannot continue treatment, I may lose my job and have to go on disability. I do not want that to happen. Now my child has been bitten. She needs to see a doctor but there are even less doctors for children. Someone needs to help Lyme patients.

    John Doe
    000 Second Street Anywhere, State
    johndoe@email. com (or fax number if you fax the letter)

    Thanks everyone.

    Pat Smith, President Lyme Disease Association, Inc.
    PO Box 1438 Jackson, NJ 08527
    888-366-6611 information line
    732 938-7215 fax

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