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Lessons from ME/CFS: Finding Meaning in the Suffering
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Interesting news via the HHV-6 Foundation

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by SOC, Jul 1, 2013.

  1. SOC

    SOC Moderator and Senior Member

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    I just happened across these while looking at the HHV-6 Foundation website for something else and thought others might be interested in digging into them further.

    A new group of antiherpetics (antivirals against herpesviruses) that addresses the entire class (rather than only alphas or betas or gammas) could be a huge boon for ME/CFS patients. The fact that it's already in Phase 1 trials gives hope for a new treatment sooner than 10-15 years out. :)
    As an ME/CFS patient with (at one time) active hhv6, ebv, and c. pneumonia infections, I find this interesting. This is not a completely unusual combination of viruses in ME/CFS, so I wonder if there is a closer association among a subset of PWME and MS than has been believed.
    We desperately need more research into the CSF of ME/CFS patients.
    Waverunner, Ema, jimells and 6 others like this.
  2. vli

    vli

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    This is good news, however, i wonder whether they'd give it to *PWC*s too? (Since right now, we have trouble even getting valcyte or vistide bc they don't think OUR condition's linked to herpes viruses)
  3. SOC

    SOC Moderator and Senior Member

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    Certainly not in the UK, where getting any decent medical treatment for ME/CFS is particularly difficult. Hopefully by the time this med is through all its testing and to market, the situation there will improve. In the US, Australia, and some other countries where there are smart ME/CFS specialists already using antivirals, these meds should take off more quickly.
  4. Charles555nc

    Charles555nc Senior Member

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    I use high dose NAC (worked up to 3600mg) for c pneumoniae infection and it was also the main treatment for AIDS patients before retrovirals were available- so I use it for my hhv6/CMV/Epstein barr infection as well. Its antibiofilm, anti biopolar (boosted my confidence and mood stability, so I gave it to my crazy mother), anti COPD, anticancer...

    I take large doses of methyl folate (1600mg twice a day) with the NAC to prevent a methylation block as glutathione levels rise.
    Little Bluestem likes this.
  5. SOC

    SOC Moderator and Senior Member

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    With all those anti-something characteristics, it sounds like we should all be taking NAC by the truckload. ;)

    Seriously though, I've been thinking about increasing my NAC. I need to go hunt up info on side effects, safe dosages, interactions, and so on. I have some sources I use, but if anyone has a really good source for that kind of info on supplements, I'd love to hear about it.
    Valentijn likes this.
  6. Valentijn

    Valentijn Activity Level: 3

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    There's been lots of AIDS studies using NAC. 1800mg is definitely safe long term, and it can go higher based on body weight. I think you need to go to something like 10x that dose to get into a known risky area.

    The only risk at normal doses seems to be if you have an issue with kidney stones, specifically ones made of cysteine. If not, then it should be quite safe.
    Little Bluestem and SOC like this.
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    parvolex is the drug name for it used in hospitals for paracetamol overdoses. You might find more info googling that name too. It is given IV in hospital but i do remember reading a study that showed efficiency with an oral form too, but i dont have that study on hand.
    Little Bluestem and SOC like this.

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