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Result Igenex?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by maryb, Apr 30, 2014.

  1. minkeygirl

    minkeygirl Senior Member

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    It's hard to be patient when we want immediate gratification. We've been suffering for so long we want it NOW!!!
    maryb likes this.
  2. liquid sky

    liquid sky Senior Member

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    I have a positive test by Igenex. Tried antibiotics off and on for a year. Never got to where I could stand the terrible pain they caused. Nothing would touch the pain and there is a limit to what one can stand. Hope you fare much better.
    maryb likes this.
  3. maryb

    maryb iherb code TAK122

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    @liquid sky
    which a/biotics did you try, were you under a doctor, did you have pain before the a/biotics?
    How are you now?
  4. liquid sky

    liquid sky Senior Member

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    Hi maryb, it has been a few years ago, so I have forgotten a lot of the antibiotics I tried. I know I started with Doxycycline and I could tolerate low doses of it. It did not touch the disease however. I remember Flagyl being particularly tough on me. I also tried Quinine. I actually had one evening where my pain subsided after taking the first dose of it. Then nothing.

    I started on oral antibiotics and then gave myself IM shots. I just kept getting worse. The doctor I was seeing wanted to put a pick line in my arm and start IV antibiotics, but he lived five hours away from me and wanted my PCP to prescribe and take responsibility for the line. She wouldn't do it. I gave up because I felt the antibiotics were causing severe cytokine storms and I actually felt I might die from them.

    I also noticed that few got well on antibiotics and those that did felt better when taking them rather than much worse. I was on them for about two years off and on. I do not know what to do about the positive test. If you find something that works or even helps, let me know please.
    maryb likes this.
  5. Daffodil

    Daffodil Senior Member

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    hi liquid sky. have you ever thought about trying IVIG?
  6. maryb

    maryb iherb code TAK122

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    @liquid sky
    oh I'm so sorry to hear about your experiences on a/biotics. I hope you find a doctor soon who can help you through some successful treatment.
  7. maryb

    maryb iherb code TAK122

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    This is from a post on a Lyme discussion forum

    p58 or 58 kDa (which is positive on both IGg and IGm on my result)
    has a high in specificity for lyme disease, see the German guidelines p.6, but these guidelines don't explain/comment on it further, Dr D (rheumatologist) who was the rheumatologist at B/Spear told this person that the 58 is ''lyme in Europe'', but again this would not be included in the Finnish, French or UK tests used
    JBB likes this.
  8. liquid sky

    liquid sky Senior Member

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    I have not tried IVIG because I do not know how to get it prescribed for me.
  9. maryb

    maryb iherb code TAK122

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    Okay just got my result - so its positive on the epitope test on band 31for Lyme. (This was IND on the WB)
    not sure how I feel - obviously gutted but other than that it hasn't quite sunk in yet. Had a little weep but that's over for now.
    Alea Ishikawa, Hanna, JBB and 2 others like this.
  10. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Awful to "like" something that has you gutted, but in the cyber-world it is a way of saying :hug:.

    Sushi
    Hanna, JBB, Valentijn and 1 other person like this.
  11. JBB

    JBB Senior Member

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    Hi maryb. I am sorry for your predicament and I hope you are feeling better about it now. Looking on the positive though...as you will know lots of people who test positive for Lyme improve when treated...who is to say this isn't the root of your whole problem! Fingers crossed for you :hug:.

    Do you have a LLMD here in the UK? I know there is one which Dr M mentioned but I don't know his name, I'll have to ask her. I would very much like to see one myself but don't know if we have any good LLMD's here!

    :hug:

    J

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