Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Cytokines panel

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Frenchguy, Oct 29, 2017.

  1. Frenchguy

    Frenchguy

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    Hi evereyone,

    Anyone have had a cytokine panel ?

    I actually look for tests to try to find evidence of autoantibody (cell trend) and cytokines to help my doctor for treatment,

    If anyone have had this test, please tell me your lab and the tested cytokines,

    David
     
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  2. pattismith

    pattismith Senior Member

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    I tested some auto-antibodies in France :

    Anticorps anti-musk
    anticorps anit-canaux calciques
    anti-récepteur de l'actylcholine

    profil encéphalique limbique (lab Ketterthill Luxembourg)

    anti-NMDAR
    anti-AMPAR
    anti-récepteur GABA b
    anti-récepteur Glycine
    anti-DPPX

    Anticorps anti-neurones (Biomnis):

    anti-Hu
    anti-Yo
    anti-Ri
    anti-Ma2
    anti-CV2
    anti-Amphiphysin

    Anti-parathyroidiens ou anti-récepteur sensible du calcium (CHU de Lyon via Biomnis) = Anti-CaSR

    (They won't give you any level, just a negative/positive result)
     
  3. Frenchguy

    Frenchguy

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    Tks Patti,

    Did you test positive ?

    I will send my blood at celltrend soon, but the problem is to centrifuge the blood.

    I convinced my doctor to try rituximab. Before that, I would like to test the cytokines implicated in CFS.

    David
     
  4. pattismith

    pattismith Senior Member

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    hi David,
    no I was negative for all of them, it seems I'm not in the auto-imunity CFS subgroup, so I don't consider Rituximab for me.
    I believe I am more in the mitochondrial dysfunction CFS subgroup, so I rescue my mitochondria with a heavy suplement program, and It gives promising results for me.:thumbsup:
     
  5. Frenchguy

    Frenchguy

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    Ok ok. You follow the program mentionnes in the forum ?
    Good luck for you,
    David
     
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  6. pattismith

    pattismith Senior Member

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    I don't know which program you are refering to, but yes I found all my program by digging in PR:lol:
    Good luck for you too David, and keep us informed when you will receive your results!
     
    Frenchguy likes this.
  7. junkcrap50

    junkcrap50 Senior Member

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    I did the Cyrex autoantibody panel and tested positive for nearly all of the autoantibodies they tested. It was helpful to me as I did not know I had any autoimmune issues and many of my extra CFS symptoms correlate to system dysfunction which showed positive autoantibodies. I test normal on most autoantibodies that you can test for at Quest. Cyrex advertises their testing as being more sensitive and catching autoimmune isues before you have full blown autoimmune disease and autoimmune organ failure.

    There is a recent post somewhere on here that listed all of the auto-antibody testing that are relevant to CFS.

    In regards to cytokine testing, there are a number of markers of inflammation that you can test for at Quest, such as MMP9, C4a, C3a, TGF-Beta, and others. While not the cytokines per se, if your inflammation is sky high, then your cytokines are also high.

    I did do a cytokine panel called: Neuroscience Advanced Stimulated Cytokine Panel. I believe it's not branded/sold under the company Parmasan. At the time, I thought it would reveal more info about my immune system, but it ended up not being all that helpful. Yes it showed I had high cytokine, but I already knew that from my inflammation symptoms. Also, not many of my doctors know what to do about it. I'll add some links about this Stimulated Cytokine Panel below:

    https://www.pharmasan.com/?p=testing (Click on Immunology > Functional > then your cytokine test)
    https://www.pharmasan.com/index.php?p=cms&cid=95&pid=87
    https://neuroendoimmune.wordpress.com/2011/03/19/134/
    http://forums.phoenixrising.me/index.php?threads/neuroscience-cytokine-profile-test-results.36456/
    https://www.truehealthlabs.com/Th1-Th2-Cytokine-Test-Advanced-Canada-p/ns_5105_canada_only.htm (nearly about 2x of what I paid, so look for better pricing)
     
  8. drob31

    drob31 Senior Member

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    I tested weakly positive for Antiphospholipid antibodies on the cyrex autoimmune panel. A top physician evaluated me and said I do not have APA, and also ran an insane number of tests for it, all of which were negative.

    Cyrex autoimmune panel is questionable to me.
     
  9. Learner1

    Learner1 Professional Patient

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    Here's the list of antibody testing put together by @Jesse2233
     

    Attached Files:

  10. jstash

    jstash Senior Member

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    This is, unfortunately, laughably out of reach for the majority of patients.
     
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  11. Learner1

    Learner1 Professional Patient

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    If you don't know it exists, you can't test for it, can you?

    My doctor didn't feel it necessary to figure out every antibody I had, just that I had enough enough evidence of autoimmunity that it was a problem to tackle. He chose the panel that matched my symptoms the best, and found them, for €450.
     
  12. jstash

    jstash Senior Member

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    I'd hazard a guess that *most* of us have many standard tests, and even many second-line tests reading as normal. That makes most doctors reluctant to press on further.
     
    Joh likes this.
  13. Learner1

    Learner1 Professional Patient

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    Perhaps this is part of why this disease is so mysterious... It becomes clear its not a psychiatric problem once one starts to accumulate abnormal labs. Curious doctors might be inspired to press on further....:nerd:
     
  14. jstash

    jstash Senior Member

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    My point is that most of us won't even be able to get access to those labs, because you're talking really specific, specialised tests that require a doctor's approval to investigate. I've been tested for almost every single virus that's talked about, tested for cortisol, vitamin levels, liver function, kidney function, a full endocrinology panel. Nothing shows as abnormal. Given that seems to mirror most patient's experiences, I think it's a far cry to expect that we can then get these tests to "prove" something is wrong.
     
  15. Learner1

    Learner1 Professional Patient

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    It also depends upon how tests are interpreted.

    I recently had an ACTH Stim test done that an endocrinologist interpreted as normal, even though I was in a sleepy heap the whole time, which my ME/CFS looked at and said was very abnormal and reflected how I felt.

    Tests for viruses, vitamin levels, and other hormones can be interpreted VERY differently by different doctors. It takes having one who understands the context, looks beyond "normal" ranges (which frequently include a lot of sick people in normal), and has the curiosity to diagnose and solve your problem. Most don't.

    It is possible to get a lot of labs run if you're persistent and find a doctor who is at least malleable.

    And values that may be "in range" at one point in time may go out of range.

    There's no substitute for decent testing. You don't need to test every last thing, but if you don't figure out what's wrong, its pretty hard to fix.
     
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