maybe lyme? confusing test results

Discussion in 'General Health & Wellness' started by chelsea85, Dec 21, 2009.

  1. chelsea85

    chelsea85 New Member

    I've had symptoms of lyme for about 6 years now and was finally tested and began treatment for it. However when I went to the special infections dr. she said I didn't have lyme because I didn't have 5 bands positive like the CDC says I have to. She thinks I have CFS and RA. I've also been diagnosed now with FM.

    My tests were as follows:
    EIA positive
    IgG AND IgM positive at p41 only

    I've looked everywhere I can find and being positive at p41 can only mean that I either have lyme, syphilis, periodontal disease, HIV, or herpes. I don't have symptoms for any of these things but lyme. Is there anything else that can test positive at p41?
  2. TwoCatDoctors

    TwoCatDoctors New Member

    There is a Lyme Board here and I have read them discuss another test for Lyme at a certain lab. Just a suggestion, but try going on the Lyme Board here and see what they can tell you. They have been through so much and may have answers for you. Good luck and hugs.
  3. victoria

    victoria New Member

    The 5 bands the CDC look at are not all necessary at all for a confirmation of Lyme. those 5 bands are only used for, in their words, 'tracking and surveillance'. They and the IDSA (infectious Disease assoc.) even say Lyme is supposed to be a CLINICAL DIAGNOSIS. The accuracy of the best lab for doing the Western Blot is only 50-70% accurate, so there's lots of room for error. Please go to ILADS.org, also publichealthalert.org, and lyme flash net (forget which word goes first, just google those 3) - at the latter there is a section where you can post where you are and people will contact you with names of 'Lyme Literate MDs' who have experience with Lyme.

    My son was lucky enough to come up with all 5 bands positive. I say 'lucky' because otherwise he'd have been in denial, can't blame him - who wants to have it. He was going downhill quickly at 17, all the 'regular lab tests' run by our internist were normal and the MD had no clue as to where to send him tho he agreed there was something wrong. (At least he was honest).

    Anyway I'd already started an experimental protocol that was causing herxes AND taking away some of my symptoms... AND reading suddenly about Lyme in 2005. He reflected so many of my own symptoms, it was easy to add 2+2... it runs in clusters/families.

    I took him straight to the nearest LLMD, even tho it was a 400 mile round-trip by car. He's on disability despite 3.5 years of abx, tho better than he was. He recently watched 'Under our Skin', the documentary about Lyme, and recognized himself... he now realizes how close he came to having no life at all.

    Wishing you luck in finding a good doctor... the hardest part no matter what you find out.

    all the best,
    Victoria

  4. Nanie46

    Nanie46 Moderator

    Hi,

    Testing for lyme is so poor, that a diagnosis of Lyme should never be ruled out with just a negative lab test.

    Unfortunately 99% of Dr's do not understand this...or lyme for that matter, and mistakenly rule out lyme, leaving people to suffer forever.

    Most people with lyme were first diagnosed with illnesses like FMS, CFS, MS and others....then later realized that the CAUSE of their illness was the bacteria Borrelia burgdorferi....lyme.

    If you were tested at a regular lab like Quest or LabCorp, they do not even test for all bands. They leave out some very lyme specific bands.

    Igenex is the best place to get tested, but many people with lyme still have offically CDC negative tests.

    Lyme is a clinical diagnosis, based on history and symptoms. A lyme literate MD would be able to evaluate you to determine if you have lyme and possibly related coinfections like babesia, bartonella, ehrlichia, etc.

    I had a FMS diagnosis for 21 years before discovering through my own research that I have lyme. I have been treating for 10 months and I am getting better.

    Follow your instincts. I had 3 Dr's tell me that I did not have lyme.....other people have seen as many as 40-50 Dr's and were told they didn't have lyme when they really did.

    I think people in general are confused because they don't think of lyme as being a possible cause of their FMS or CFS symptoms....they only think of it as a completely diffferent diagnosis....but it is a bacteria that can cause those symptoms, just like a virus can.

    I think people with FMS or CFS would do themselves a favor by thinking of their symptoms only as symptoms, and not as their final diagnosis.

    Then they will keep looking for the actual CAUSE of their illness, which often is borrelia burgdorferi...lyme.


    Be sure to read this info......Dr B's guidelines are the standard for treatment....see page 7 for his western blot info too.....and pages 9-11 for symptom list.....



    http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf



    http://www.drcharlescrist.com/testing.htm



    http://www.jpands.org/vol14no3/maloney.pdf



    http://www.harp.org/Twostandardsofcare.htm


    The lyme board here is not very active, but feel free to go there.

    Lymenet.org is also a very good resource for asking questions and getting support.

    Go to lymenet.org......click on flash discussion.....sign up for free like you did here.....click on the Medical Questions board and post your questions. It is a very active board.

    There is also a Seeking a Doctor board where you can post asking for a LLMD in your state.

    There is also a good General support board, etc. Lot of people there who understand.

    If you want more info I can point you in the right direction.....leave a post on the lyme board in case I forget to check this board.

    Good luck to you!