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Do I still have ME/CFS if immune deficiency found?

Discussion in 'General Treatment' started by Adster, Mar 8, 2015.

  1. Adster

    Adster Senior Member

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    Years and years ago I was "diagnosed" with ME/CFS. Late last year I was found to have an immune deficiency - very low levels of MBL(mannose binding lectin).

    Doctors don't seem to take seriously or be able to answer my question of whether or not I still officially have ME/CFS now this immune deficiency has been found.

    I'd appreciate any thoughts on this!

    Cheers.
     
    oceiv likes this.
  2. Lillybelle

    Lillybelle Senior Member

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    Hi @Adster good question!

    Underlying the immune deficiency diagnosis is an assumption that the definition of Me/CFS is an immune disregulation and/or disorder. I happen to believe it is!

    But many researchers clarify it as a range of other disorders such as viral/bacterial infections, Gut microbiome, Lyme Disease, Autoimmune (different from immune) , Neuroimmune and or various brain disorders including HPA dis reg, an infection that has crossed the blood/brain barrier, dysfunctioning ganglia and a range of other suggestions.

    I know that patients with ME/CFS are consistently found to have poor NK (Natural Killer Cell) functioining which means we get sicker for longer and are unable to fight off viruses bacteria and parasites like normal people. Sounds like a defunct immune system to me.

    So we know these 2 are correlated but the cause is as yet unidentified. I recently visited Griffith University's CFS Health clinic and they are working on research looking at T1 and T2 immune regulation cells as not working properly. They are fairly confident this research will produce some results in the not too distant future that these are key to understanding the disease.

    So answer to yr question is it may or may not be relevant. Do you still have the symptoms is probably the key issue?
    And further we really wont know until there is a provable diagnostic test. Hope that helps
     
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  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Someone in another thread mentioned immune exhaustion. Said to be common in hiv and hepatitis and other chronic infections.i guess it can be an obvious low immune numbers thing or low function or immature immune cells that dont function adequately.

    Looking up immune exhaustion, the term t cell exhaustion was also mentioned. It sounds plausible if one has been sick with cfs/me for a long time and fighting many infections.

    I guess the next questions is how to we give our immune system some get up and GO.
     
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  4. Kati

    Kati Patient in training

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    subsets have not been defined real well. it is absolutely possible that a subset of our disease has known immune defficiencies including IgG subclasses, and else. Low NK cell function would be considered immune defficiencies.
     
    Adster likes this.
  5. Adster

    Adster Senior Member

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    Thanks for the replies :)

    Maybe I can put it a bit clearer what I'm getting at. If for example the doctors found I had un-diagnosed cancer or MS and that was causing my symptoms, the ME/CFS diagnosis would go out the window no question. Does the still unknown nature of ME/CFS mean that some immune illnesses will fall into a grey area when it comes to reassessing a diagnosis? I was always under the impression that exclusion of other diagnosed problems was a criteria for a ME/CFS diagnosis.

    @Lillybelle Yes, still very much unwell, just with some new info!
     
  6. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Mannose binding lectin deficiency is quite common and for most people either never gets noticed or gets diagnosed because of repeated skin boils and things like that. The only case I ever treated was a professor of immunology who diagnosed himself when he thought he was a normal control. Low MBL is not as far as I know associated with any symptoms like ME/CFS so it would not be an exlcusion on the grounds of being an explanation for symptoms other than ME/CFS. So I would be pretty clear it has no influence on your ME/CFS diagnosis. It might be relevant to recurrent infections though. (As far as I know MBL deficiency does not affect virus responses much. The mannose binding protein binds to bacterial cell walls.)
     
  7. CantThink

    CantThink Senior Member

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    I think it depends whether this is a stand alone illness that could be causing all your M.E.-type symptoms or whether the immune deficiency is causing some of your symptoms and is either part of your M.E. type or in addition to it.

    The exclusion criteria I always understood to be: that whatever the other disease was it would account for the whole of what is being termed to be M.E.. It is complicated when a new diagnosis arises that could be a differential diagnosis.

    One of the telling things for me has been if there is treatment for the alternative diagnosis and that treatment works, is the M.E. still there? I had this with autoimmune thyroid disease. I had gained extra symptoms and illness on top of long-standing M.E. So the confusing part would be more where the crossover of symptoms is (the ones that could be either resulting from either condition). When the thyroid disease is under control I'm still ill with M.E.
     
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  8. Adster

    Adster Senior Member

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    Thanks heaps for the replies. When I read about MBL deficiency I see things like autoimmune problems and arthritis mentioned, both of which loosely fit for me. But given the lack of solid data for those associations it sounds like I need to focus less on this and stick with the ME/CFS path.

    Cheers folks :)
     
    heapsreal likes this.
  9. taniaaust1

    taniaaust1 Senior Member

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    If MBL deficiency don't cause the ME/CFS symptoms such post exertional fatigue or malaise.. means you must still have ME/CFS. I think most of us have some kind of immune issue, I found out recently I have IgE deficiency (something which hasn't been much studied at all but one study showed ones with ME/CFS get this at a lot higher rate).
     
    Adster likes this.

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