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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Gut and EBV?

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by Daffodil, Nov 26, 2012.

  1. Daffodil

    Daffodil Senior Member

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    Check out this quote from http://www.checkorphan.org/research/view/epstein-barr-virus-chronic/page/37:

    "The problem of Epstein-Barr virus (EBV) and lymphoma in IBD was extensively discussed. Lymphomas can develop in intestinal segments affected by IBD and are in most cases associated with EBV. "

    Can EBV exploit the problems created by IBD? Could the resulting effects (perhaps changes in gut flora) cause CFS?
  2. alex3619

    alex3619 Senior Member

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    Viruses like EBV exploit inflammation. Inflammatory zones are places the virus replicates. These kinds of viruses also lurk in nerves and immune cells. One of the issues is that they can cause inflammation in nerves needed to regulate gut function. There was a paper recently that discussed how bacterial infections and EBV interact, iirc, but I forget the details.
    Hanna likes this.
  3. Daffodil

    Daffodil Senior Member

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    if our bodies cannot silence EBV....and antivirals done work....not sure what can be done....
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Improve nk and cd8 t cell function but with antivirals to get the ball rolling??
  5. alex3619

    alex3619 Senior Member

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    Getting the immune system back is the key. We wont cure it, our body will once we get immunity working, presuming its pathogen related, although antivirals or whatever will help. Heapreals is right, but its more than that. We need to restore healing. In my reading on gamma delta T cells something as simple as eating apple skins can help (not peeling them), though I do not know how effective this is. I am also looking at other options.

    Also it may not be possible to cure ME or CFS in a reasonable time frame, but that doesnt mean we cant mostly restore our function. Being almost well is almost as good as being well. Many people are pursuing ways to do this, including me.

    Having really effective boosts to NK cells function is a big thing. If nothing else then restoring immune function will help us eliminate all those pesky infections, including EBV, that never seem to clear up. That has to help. Low NK cell function parallels low T cell function in HIV AIDS. They have similar roles. So that means many ME patients have serious immune issues, though perhaps not all.

    Similarly we can restore gut function. Its just a question of figuring out the pieces and then finding solutions. Fortunately lots of work has already been done in this area.There are many success stories already. Once we have ways to measure success (biomarkers) we can look at all these "cures" and "treatments" and be sure about what really works.

    Let me give a sense of where my thinking is heading, healing wise. I think we need methylation vitamins. We need the antioxidant pentet. We need carnitine. We need an NK cell booster. We need the mineral magnesium to cope with NMDA hyperactivation, and we need selenium to help with bacterial toxin detox. Olives are useful to deal with mast cells, and apple skins help the gut heal.

    The real kicker is getting this to work requires I take resverotrol, which disrupts and improves my sleep at the same time, and seems to increase my pain levels. Its a powerful antioxidant too, and it has anti-inflammatory properties. I am trying to piece this all together to get my new shotgun protocol, call it mark 3 shotgun protocol. Everything I can leave out I am leaving out to make this as cheap as possible.

    Bye, Alex
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  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Alex one more thing that keeps popping up in research that is low is q10.

    I would also add trying to get the body into its normal cortisol and circadian rhythms, this has more to do with sleep which i think can play a big part in disrupting all other body systems etc and i think also plays a part in decreased immunity as well as insulin resistence which seems to occur alot in cfs/me due the adrenal dysfunction.

    There seems to be alot of articles talking about immunovir but not alot of personal experiences here on PR. I wonder if its alot better then we know as dr klimas and dr rey keep prescribing this med and have also heard of a few accounts of people greatly increasing nk function over several months??

    either way its a multi pronged attack i think.
  7. Daffodil

    Daffodil Senior Member

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    does anyone know how to get tested for enterococcus and streptococcus? i keep reading that these 2 are prevalent in people with a lot of cognitive issues like me...but when i look at my metametrix results, i don't see any mention of them...

    thanks
    xoxoxo
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I don't know the metametrix test but the RedLabs Metagenomics tests those.

    Sushi
  9. Daffodil

    Daffodil Senior Member

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    i cant believe it. i should have properly researched the metametrix test! arghhh

    i guess i'll wait and see what my doctor says.

    thanks!
  10. Daffodil

    Daffodil Senior Member

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    ok i do see something called streptomyces. that probably includes streptococcus species...lowish in me. but i dont see enterococcus

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