1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
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.
Discuss the article on the Forums.

long-term effects of antiretroviral drugs

Discussion in 'XMRV Testing, Treatment and Transmission' started by fresh_eyes, Nov 10, 2009.

  1. fresh_eyes

    fresh_eyes happy to be here

    Messages:
    900
    Likes:
    5
    mountains of north carolina
  2. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

    Messages:
    337
    Likes:
    0
    Because of the low amount of mutation in XMRV, if we can ever get our viral loads down very low in the first place, its likely that we wont need as much firepower for permanent maintenance as the poor son of a guns with HIV need. Even with rock-bottom HIV loads, single-drug maintenance of HIV is soon defeated by evolved viral resistance. That's why they have to take such gobs of drugs.

    Or who knows, we may just require chronic use of some rather toxic agent. It's possible.
  3. Navid

    Navid Senior Member

    Messages:
    409
    Likes:
    58
    there was an article about this in NY Times last week

    interesting and scary news...but i'd rather have 10 good/active years then spend the next 30-40 stuck in bed...just my 2 cents :)

    and the hiv/aids folks would have been dead if they hadn't taken the meds....i'll take premature aging over early/fast/painful death.

    regards, lisa
  4. fresh_eyes

    fresh_eyes happy to be here

    Messages:
    900
    Likes:
    5
    mountains of north carolina
    Absolutely worth it for HIV and I'm sure many cases of XMRV. For someone like me just moderately ill (functioning at 5 or 6, as of now), more of a judgment call, maybe.

    Eric, good point re replication rate - so there's substantive reason to hope we might not need such a toxic cocktail. (Assuming XMRV pans out, obviously!)
  5. Robin

    Robin Guest

    Is it possible that XMRV is of such a different nature than HIV (much slower replication) that ongoing anti-retroviral medication may not be necessary, or may be different from person to person? Maybe some short term intervention can help the immune system put the bug away.
  6. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

    Messages:
    337
    Likes:
    0
    ^ Maybe. Gut level, I doubt it. It seems like a lot of people who got 90% better, or (allegedly) even more, have gotten worse again. Chia claims a number of people got way better (or even perfect) on his anti-viral protocol that includes interferons. Most of them relapsed.

    None of this is primo research where all conceivable factors have been controlled/randomized. It's quasi-anecdotal. Yet it seems to paint a picture.
  7. Solon

    Solon Guest

    I though Chia had permanent results with 50% of his patients including his son. Do you have any more info regarding this?? Iam going to try oxymatrine soon to treat what is thought as a chronic enteroviral infection
  8. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

    Messages:
    337
    Likes:
    0
    I haven't read a high quality source on that. I'm relying on hearsay more or less. If you know this area better than me, you are likely right.
  9. gracenote

    gracenote All shall be well . . .

    Messages:
    1,508
    Likes:
    42
    Santa Rosa, CA
    living longer AND flourishing

    The article had this statement about living with HIV on retrovirals:
    This sounds like where we've been in the ME/CFS community all along. Because there was not the threat of death, or that threat was too far in the future to cause concern, there hasn't been the urgency from just about anybody besides those of us who are suffering, to find a cure. Now the urgency may be based on our contagiousness impacting healthy people. Also that there is money to be made. Hopefully, there will be funding and research interest to help us get completely well rather than just to manage better. I don't think we just want to "live longer with the disease." We want to flourish. And hopefully, this new research can also help those living with HIV to flourish as well.
  10. acer2000

    acer2000 Senior Member

    Messages:
    574
    Likes:
    203
    Although they are designed to be selective for viral enzymes and pathways, its likely that the HIV drugs are affecting normal cellular systems that are needed for healthy cellular repair/function and over time they damage normal cells. Most drugs such as antibiotics and antivirals do this to some degree, the ones that do it less are usually "less toxic". Also, insomuch as aging is dependent on antioxidant status, having an chronic infection causing inflamation and also taking drugs that put a heavy load on the body's detoxifying/antioxidant systems probably accelerates the aging process as well.

    This whole area is the reason why chronic long term supressive therapy is really unsustainable with HIV and or XMRV (if it ends up being causual for CFS). Not only is it expensive to keep developing and taking multiple supressive drugs for decades, it likely causes long term effects that are not able to be tested for during the drug trials. Also, in the case of HIV the virus mutates so quickly that its really unreasonable to think that we will be able to keep up with it forever and develop drugs that work to keep it from replicating.

    They need to focus on developing a vaccine, but also on eradication therapies that will put HIV and other retroviruses under completely. Unfortunately for the currently infected, I think like with smallpox, polio, etc... public health authorities probably look at the situation such that if they can come up with a vaccine and halt the spread, the epidemic will take care of itself because the non infected population will be immune and when all of the people who have the diease die, there will be nobody left to spread it. The one silver lining (if you can call it that) is that it appears to be *so hard* to make a vaccine for HIV that they might be actually easier to eradicate it. Sorry for the diversion, sobering to think about though...

See more popular forum discussions.

Share This Page