Lyme testing?

Discussion in 'Fibromyalgia Main Forum' started by fibrobutterfly, May 23, 2006.

  1. Do most drs. do it if you ask? And what kind of test do you ask for and I guess it has to be sent to a specific place? How are you treated if positive?
  2. victoria

    victoria New Member

    unless you have had at least a bulls eye rash, but it is estimated less than 50% do... plus even if you do, you may not see it if in your scalp...

    doctors will also not test for it if it is not officially in your state and you haven't visited an area of the country where it is recognized.

    Ask for the Igenex testing, my son's was done thru Quest but sent to them... but it may not show up if it is not in your blood at the time of the test -- and doctors are supposed to treat by the 'clinical picture', ie, symptoms, as no blood test is 100% accurate.

    Antibiotics are used to treat since Lyme is caused by a spirochete form of bacteria - the problem is they get into all tissues of the body and are pleomorphic (change shape) and get inside your white blood cells and other tissue cells and/or form cysts and hide out...

    the other problem is that there are over 100 estimated varieties of Bb in the US alone, different abx work on different varieties, plus you need to take flagyl one week/month to dissolve cyst form...

    I highly suggest you go to lyme net or ILADS.org and read all the information at the links... and then find a LLMD thru them.

    good luck,
    Victoria


    [This Message was Edited on 05/24/2006]
  3. ajp

    ajp New Member

    Hi Fibro butterfly,

    Most regular MD's don't have much knowledge in Lyme, mine didn't. I wish that she or I had looked in Lyme disease years ago. Your really have to find a doctor that is a Lyme literate. My diagnosis was "clinical". He said that the test are very inaccurate and by my symptoms, "no question that I had Lyme disease."

    I never remember a bite or a rash and my doctor said most people don't. He feels that now most medical schools are teaching about Lyme disease, so hopefully soon, we won't be misdiagnosed. It really isn't the doctors fault, most just aren't taught about it.

    But, please if you suspect it,get treatment right away. I now have what is considered chronic Lyme and probably have had it for years. I have arthritis, vision problems and severe cognitive problems. It will be a long, hard road to recovery for me. So please....don't wait.

    I started my antibiotics last week. My doctor said I will be on them at least a year, probably longer. I had a terrible herx on the fifth day but am now doing better on day 7.

    Hope this helps..let us know how you are doing.

    Love Mindy
    [This Message was Edited on 05/24/2006]
  4. mme_curie68

    mme_curie68 New Member

    Hi -
    My doc did do the Lyme test for me at my request. I live in an area that has Lyme. But if you have been outdoors anywhere in the country that does have Lyme, in woods or tall grass, or with pets who run around in same, you could still have been exposed.

    My rheumatologist ran a whole bunch of tests for autoimmune: rheumatoid arthritis, Lupus, etc. He forgot to do the Lyme. I didn't recall getting my Lyme titer so I asked my internist and she ordered it for me. It was really the last potential "thing" between me and a rock-solid diagnosis of FM.

    And of course, my Lyme was negative. So "Boo" for me, still have FM : (

    Hugs,
    Madame Curie
  5. jarjar

    jarjar New Member

    Many on this board have tested negative on Lyme as most lyme test catch maybe 50 or 60% of lyme. Nicole just posted the other day that she was negative on a routine lyme test but came back VERY positive with Igenex.

    The most sophisticated state of the art test is the Igenex Western Blot. All they specialize in is testing for lyme and coinfections.

    Jar
  6. mrdad

    mrdad New Member


    My daughter has had Lyme Disease for many years. She contacted it in Northern California and I recently read on another website that the test for Eastern Lyme is different for that of Western Lyme. According to the Posting, this girls mother had beenmis-diagnosed as FM rather than Lyme Disease for over twenty years!! If th ios info. is true, it may be valueable to look into t the time of testing.
    Furthermore, there is more than one type of test and one is more difinative than the other. You may want to research this factor. Good luck.