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CMV positive, what now?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Chiron, Jun 1, 2018.

  1. Chiron

    Chiron

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    I have severe inflammatory bowel disease, life threatening. I'm grasping at straws right now to try and get a grip on this disease because I don't want to lose my bowel. My current course of action is high level testing for parasites (mostly ELISA and PCR via blood and stool).

    A recent virology test turned up positive for CMV. Both IgM and IgG are present. I'm told this can mean a recent infection, reinfection, or a reactivation. I don't know how to tell the difference. They claim that the only way to know for sure if CMV is the reason for my bowel disease is to do a biopsy of a bowel ulcer during colonoscopy.

    The weird thing is that back in 2015 they did that, and I was given the blood test for CMV, and they all turned up negative. So between 2015 and now, I have contracted CMV somehow.

    My life is in ruins and I am not sure what to do with this CMV diagnosis. It sounds like CMV can really wreck the immune system and cause CFS, which I certainly have, though it seems secondary to my IBD.

    Are there natural remedies for the treatment of CMV? The pharmaceutical approach is not only expensive but very harsh.

    I'm also wondering what other tests I should get... seems like everything in the herpes family and EBV should be looked for. I'm not sure what else.

    Any light that people could shed on this for me would be appreciated. I am pretty strung out and disabled right now.
     
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  2. Wonkmonk

    Wonkmonk Senior Member

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    I think @Hip speculated about a possible treatment option with high-dose genistein, but if you have positive IgM, I probably wouldn't risk trying natural remedies that in the end may not work well.
     
  3. Runner5

    Runner5 Senior Member

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    I get some bad flare ups but I am unfamiliar with CMV. A harmless try is just L-Glutamine or a 3:1 product like Intestinew. I usually take Aloe Vera gel caps (which are liver toxic, don't recommend them) and go on a really strict "Corn Chex" diet. For whatever reason 4 bowls a day heals up my GI really rapidly, I am thinking it's the fact it has vitamins and minerals added? Maybe because I'm not eating anything else? I can't really explain it especially since I'm allergic to milk, but it works like a silver bullet so I just won't question it too closely, it's my go-to when I'm in trouble and have to stop eating real food.

    Sounds like you're past the 'trouble' sign though and need to work with your doctor closely.

    It will get better - it will - and you'll shuck off the fatigue and get your life back. ((hugs))
     
  4. Hip

    Hip Senior Member

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    As @Wonkmonk mentioned, some pharmacokinetic calculations I did (not yet posted on this forum) suggest the flavonoid supplement genistein in high doses will have potent anti-cytomegalovirus effects. Most of the other supplements I looked at in my calculations had negligible antiviral effects.

    I put some info about the antiviral effects of genistein on cytomegalovirus in this post and subsequent posts.

    Interestingly, this review paper finds flavonoids such as genistein generally beneficial for inflammatory bowel disease. Although genistein works more for Crohn's rather than ulcerative colitis, as the paper says "genistein did not improve the severity of colitis".

    There might be some risks with the higher than normal genistein doses that achieve a good antiviral effect, though.



    Valcyte is a normal pharmaceutical treatment for cytomegalovirus, but as you say, it can be a hard to tolerate drug for some ME/CFS patients. Although it depends, as some ME/CFS patients seem to tolerate this drug well, and experience no adverse effects, whereas others feel quite awful on Valcyte.

    Cidofovir, foscarnet and a new potent drug called letermovir also have good anti-cytomegalovirus action.
     
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  5. Wonkmonk

    Wonkmonk Senior Member

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    Wasn't there also some evidence that Raltegravir might work, too?
     
  6. Hip

    Hip Senior Member

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    From the calculations I did, although raltegravir is antiviral in vitro, it turned out to have negligible antiviral effect for cytomegalovirus in vivo.
     
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  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Valtrex and famvir have been used in organ transplant recipients to prevent cmv infection, this is different to using it for a current infection but worth a shot.

    Theres been several people who have had cmv and hhv6 titres come down with famvir, not a cure but some have had improvements.

    Artesunate is a herb used in malaria and lyme that some have used for herpes viruses, its success is hard to say. Many used it on here a few years back but its popularity has gone, maybe its an indication of its effectiveness.
     
    Hip likes this.

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