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EBV and B cell Immunodeficiency

Discussion in 'Other Health News and Research' started by melamine, Dec 16, 2014.

  1. melamine

    melamine Senior Member

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    Upstate NY
  2. Woolie

    Woolie Senior Member

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    HI @melamine, I have seen this too.

    The part about the EBV is interesting, but then they make a huge sweep by saying it could all reflect an immune abnormality caused by folate deficiency.

    The treatment they trial - folinic acid - seems to have a positive effect in many PWCFSs. But study is unblinded (no control group), so its hard to know for sure whether the effect is real. There's also no details about how CFS was diagnosed, and overall the paper seems to be of pretty low quality. Still, that doesn't necessarily mean the effects aren't real!

    Folinic acid (different form folic acid) can be bought from many health food stores - like iherb - but the doses in those are tiny (500-800mcg). The actual study used daily doses 30-50 times higher over a period of at least 1 month - thats' a heck a lot of the stuff.

    If you're interested in the EBV connection, there's better, more recent stuff out now. A good place to start is here:
    http://www.plosone.org/article/info:doi/10.1371/journal.pone.0085387#pone-0085387-g006
     
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  3. melamine

    melamine Senior Member

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    @Woolie - Thanks for the link! I will not be able to read it until tomorrow but am interested in reading more on the whole subject. What actually drew me to the article is the B-cell deficiency connection to another condition I was researching, which is a hyper-Igm immune deficiency condition I have developed after many years of post-EBV CFS. I also have high chronic titers of EBV and have been trying to follow clues to the kind of neuropathy I have through various angles by way of my positive lab tests. So far it is a mélange of autoimmune connective tissue-infection-immune deficiency tail-chasing. I am seeing cross-currents, for sure though.

    I had just started experimenting with a SMP and happened to have folinic acid as well as MFolate on hand. And yes, I noticed how many of those little capsules this treatment would require!
     
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  4. Woolie

    Woolie Senior Member

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    Can you elaborate, melamine?
    You put it so nicely! Is it the infection that causes the immune abnormalities, or the other way around?

    Stuff I've been reading lately is leading me to favour the infection-as-cause view. I've posted some of it here http://forums.phoenixrising.me/inde...at-could-be-relevant-to-me.34400/#post-535200
     
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  5. adreno

    adreno PR activist

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    I don't understand why folinic acid is so popular in research. Why not use methylfolate?
     
  6. adreno

    adreno PR activist

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    Results were only subjective improvement in energy and pain levels. Why not test if the folate had any effect on immune parameters? They prove no connection between their hypothesis and the results. Unimpressive.
     
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  7. Valentijn

    Valentijn Senior Member

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    I think methylfolates outside of vegetables are usually specific formulas patented by the companies which created them. So they might lack permission, or sufficient funding.
     
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  8. melamine

    melamine Senior Member

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    a hyper-Igm immune deficiency condition I have developed after many years of post-EBV CFS
    @Woolie - In 1979 I became acutely ill with symptoms of EBV and encephalitis. By the time I sought medical help I tested negative for whatever I was tested for and did not know enough to request records. It was many years before I understood the full picture of what I was dealing with.

    Then my health started on a downward course in 1997 following some minor surgery, but things like dental surgeries, improper removal of large amalgams and replacement with same, mishandling of paint thinners, and possibly "healthy" exercise during the period that followed may have contributed. IBS was one of the mid-period symptoms and as you are probably aware, there is a good deal of evidence for it playing at least a large supporting role. This period of symptom development is one of the reasons I do not think infections are necessarily the primary event, but more of a visible critical event that results in a further compromised immune system and disruption of the interconnected neuro-endocrine-immune network.

    This middle period is possibly when autoimmune symptoms started to develop, but it was not until the third phase, when I started getting very serious and consequential viral infections, that the autoimmune elements started to express themselves in full. Several years after a couple bad infections, my ANA turned positive and has remained there. I have low titers of all of the measurable ANA sub-classes or whatever they call them. I am considered to have an undifferentiated connective tissue disease now.

    My immunoglobulins were not tested until 2006, and that is when the first indication of a problem with IgM showed up. If I were unsymptomatic my condition would be called MGUS - monoclonal gammopathy of undetermined significance. But because I am symptomatic with at least one symptom known to be identified with that, I believe it would be called a monoclonal or clonal gammopathy: I have had several tests indicating monoclonal and only one indicating possibly polyclonal. I am trying to determine to what extent and how this figures into my other labs and symptoms, and that is when I found a cross-reference with EBV and selective B-cell (and possibly selective T-cell) deficiency.

    Thinking back to subtle indications of neuropathic and connective tissue signs that appeared in the second phase, I cannot say that one or another cause might have dominated. Autoimmune diseases are being increasingly looked at as having a possible association with infection. Even so, that still would not answer the question of immune deficiency or infection and maybe there is no strictly one or the other.
     
  9. melamine

    melamine Senior Member

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    Adreno, I am answering from memory and might be wrong, but I believe in some situations, specific qualities of folinic might be preferred to those of methylfolate, having nothing to do with conversion or methylation?
     

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