Igenex testing question

Discussion in 'Fibromyalgia Main Forum' started by Missizzy, Aug 2, 2008.

  1. Missizzy

    Missizzy New Member

    Hi all--I've decided to have a new round of testing by Igenex for Lyme. Even though the Mayo swore to be that Igenex had been used to test me, I've not been able to locate any records of this--only ELISA testing--which was negative.

    Anyway, my GP said he'll order anything I want. Forebearance and others, what all should I ask for? I'm also advising my sons with bipolar disorder and MS to have the same testing.

    As a side note, does it bode ill for me possibly having Lyme in that my spinal tap results showed extremely high IgG levels? I have been alternately diagnosed with MS, spinocerebellar ataxia, Parkinsonian Syndrome, and ME. I know it's been said before but I'm really tired of being so sick.

    I appreciate the input.

  2. munch1958

    munch1958 Member

    I'm so glad you are going to get the test done! You'll want the IgM and IgG panel. #188 and #189

    If you have any latent reactivating viral infections like EBV then be sure to look into Band 30/31 confirmation testing. #488 & #489

    This is where they rule out cross-reactions with viruses. It's new and wasn't available in 2006 when I had my tests done. I had so many other bands light up besides 30 & 31 it wouldn't have made a difference in my case.

    Since getting the IGX WB and starting on Buhner herbal therapy, heparin, B-HRT, dietary changes and AFs, I have ditched:

    IBS (as long as I don't touch milk products!);
    Migraine headaches,
    Daily background headache that I had for 20+ years,
    Joint pain,
    FM - muscle pain and
    all sorts of other kooky symptoms.

    I've lost my ability to predict rain too.

    I'm no longer the walking pharmacy or the "Go To" person for meds at a social gathering. Everybody knew I kept an empty small bottle with a couple of everything OTC in it. Just don't need that bottle anymore!

    The number of white matter lesions on MRI has NOT decreased and I was disappointed about that. But overall, I am very happy with my results after 2 years of intensive treatment.

    Please post your results when you receive them!
  3. Missizzy

    Missizzy New Member

    If that's what you recommend, that's what I'll request. I'll call Monday morning with the info you provided. Do you happen to know how long it takes to get the results?

    I guess the big question is what I do if it does come back positive. Would my GP treat me? My neuro thinks I have spinocerellar ataxia or atypical MS. Will he accept a positive Igenex test and work with me or do neuros quibble with the testing?

    I've tried to find an LLD in Oregon or Northern California but can't seem to locate a single one. I know Jam tried to find someone in the SF Bay area and I don't think she was real successful. Anyone have any suggestions.

    Once again, thank you!!

  4. momof4kids68

    momof4kids68 New Member

    I was diagnosed with Lyme back in 1994. Had antibiotic treatment but I don't have any records because at the time I didn't realize how important having copies of my records would be.

    With all my illnesses that I now have, I am curious about getting retested for Lyme.

    How much money do these tests cost? My doctor said he would gladly do any testing I wanted but I don't know if I can afford the lab fees to have it processed.

  5. Missizzy

    Missizzy New Member

    Jam--So glad to see your name! You are right, you did give me your email address. I got it, I believe, right before I left for Texas. I'm sorry but I had forgotten. I will look for it tomorrow. I don't think, though, that there is any problem with you posting the name of your doctor. There are even threads titled "Good doctors".

    If it is someone in the Bay Area, I'd probably be able to see them. I remember you saying something about Redwood City, I think. I used to drive down there all the time to speak on children's issues. I'd hope I could make it in the back of the motor home now!!

    We'll have to see what my Igenex test shows. Have you had one done? If so, what were the results, may I ask? Are you still as bedbound as you were? I have good days and hard days but things are pretty much the same. I'm so ready to get stronger.

    Hugs to you,