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In depth autoimmune testing - what to ask for??

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Bunchy, Jun 1, 2012.

  1. Bunchy

    Bunchy

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    16
    UK
    Hi all,

    I recently got some more in depth immunological testing done by a specialist in London and the only things that came back positive were ANA as usual (no other evidence of Lupus though - anti DSNA normal, no physical manifestations of Lupus either) and Anti Smooth Muscle Antibody (but all other liver tests were normal which rules out Autoimmune Hepatitis).

    Also "low functional antibodies to Pneumococcus" (I have no idea what this means though he wanted me to get the vaccine but I have so far refused as I react horribly to vaccines)

    I really want him to do more in depth testing for autoimmunity but haven't got a clue what tests to ask for. Sed Rate (ESR) used to come back high but now normal, same with Rheumatoid Factor.

    There must be more thorough testing to detect if there is autoimmunity going on in my case which I have suspected strongly for some time but as you can see I can't prove it yet.

    Not sure if this is the right section of the board to post this?

    Also if autoimmunity was indeed a factor (or a possibility) what immune modulators would be worth a try? I always feel better and more functional and in a lot less pain when I have a virus (it's like my immune system has something to focus on instead of attacking my CNS). I'm convinced if I could replicate this, I would be 50% or more better!

    Love Esperanza x
  2. Xandoff

    Xandoff Michael

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    Northern Vermont
    Esperanza, I was in your position for years, seven to be exact. When you find a real ME CFS Doctor they will know what tests to run. Normal GP or General practice Docs know next to nothing about what tests to run or where to order them from. For seven years I tested normal for everything and I was very ill. If you check my profile page you might see some of the tests I had that were significant for me. Are you in the U.S.? There is a co-cure list that you can google or Bing for ME CFS Doctors. Find one. Good luck. Keep searching. I remember I had and sed rate test that was almost ZERO and my GP thought it was a fluke but this sometimes happens with ME CFS. Google ME CFS Co-Cure List.
  3. Bunchy

    Bunchy

    Messages:
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    Likes:
    16
    UK
    Thanks for the reply Xandoff,

    Unfortunately I have had all the tests for viruses and all were negative - only one showed past exposure (not active infection) with EBV.

    Also all CD counts, C3 and C4 complements etc etc all normal.

    We don't have ME/CFS docs in the UK - I am seeing an immunologist who doesn't know too much about these illnesses plus I am 24 years in to this illness and the more typical hallmark ME/CFS symptoms have been replaced with autoimmune type symptoms.

    I'd appreciate any further input from people who have had this type of in depth autoimmune testing as I just don't know what else I can ask for test wise.

    Can docs test for autoantibodies (apart from the obvious ANA etc), different complements, cytokines etc? That is the type of thing I was asking for info about.

    Love Esperanza x
  4. mezombie

    mezombie Senior Member

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    East Coast city, USA
    Hi Esperanza,

    Can you get a referral to a rheumatologist?

    Lupus and less well-known autoimmune diseases are treated by rheumatologists in the US. These specialists also have training in immunology and a decent one should be able take the results you already have and dig deeper with additional appropriate testing.

    There are a number of immune modulators on the market but I was told some years ago that one has to be careful as they can actually make someone with autoimmune disease worse.

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