Sofy

Discussion in 'Fibromyalgia Main Forum' started by Applyn59, Jun 16, 2003.

  1. Applyn59

    Applyn59 New Member

    Hi,

    I was wondering if you saw a lyme specialist
    in CT an if so, who?

    Thanks,
    Lynn
  2. sofy

    sofy New Member

    The first time was about 13 years ago I had a slightly elevated lyme test and went thru 2 cycles of doxy. A few months later I was diagnoses with poly myalgia rheumatica at Lahey clinic and the general thinking was it probably wasnt lyme at all.
    About 5-6 years ago I woke up with the picture perfect bulls eye on my leg and went right to my gp and went on one round of doxy again and that was the end of that. At that time I had no symptoms except for the bulls eye which grew to be 8+" on my skinny thigh. Except for the bulls eye I felt fine.
    Now when I have been having so many troubles had a lyme test again and it was just barely positive. Had the second blood test and it was ok. I went to our local infectious disease guy, who has treated many lyme patients, and he said the only way to be sure its not in the cfs and the root cause is to do a spinal tap. I mulled tat over several weeks and let them do it. It was clear and fine so I no longer give lyme any credit for my present problems. The infectious disease guy did say even when everything is negative if the problem was from lyme only time will eventually help and that often a long time is needed to slowly get better. Yeah, yeah, yeah!
    Sorry cant be of any help
  3. Applyn59

    Applyn59 New Member

    From all that I have read and researched, most drs
    are not lyme literate at all and true lyme specialists
    are the way to go. You have to go to the right labs,
    right dr's etc. I am definitely going to try to get in
    with a lyme specialist since many people seem
    to be misdiagnosed with FMS and other illnesses when in fact they have Lyme disease. Chronic
    Lyme disease which is not a good thing to have.
    You might want to get checked again.
    It has also been stressed to be by several lyme
    patients that lyme specialists need to see
    you and your blood results. Since you had the
    rash and you have FMS, I would really check
    this out to make sure you were treated properly.
    That is just me though.

    Lynn