xmrv...the next step

Discussion in 'Fibromyalgia Main Forum' started by slammed, Nov 17, 2009.

  1. slammed

    slammed Member

    now that this virus is highly suspect in the named subset of ME/CFS sufferers, the big question is "when can all of us who are infected begin to get treated"?

    certainly once the bloodwork is confirmed individually, the antiviral mixture(s) is the next step as i understand it. is this consistent with everyone else's info?

    the timeline for treatment isn't something that is clear to me. if the blood labs are positive, shouldn't treatment be available asap, right away? is there a hold-up at that point? if so, what is it? we all are so sick. i believe every day matters, especially to those who have endured very long-term illness. it truly could be life/death due to the cascade of life-threatening symptoms: cancers, digestive failure, circulation/heart failure, chronic inflammations, etc etc.

    any solid information about this most important next phase will be appreciated.
  2. ladybugmandy

    ladybugmandy Member

    there is no information about treatment, other than the fact that some doctors are now using AZT. i think low-dose AZT is being recommended by the nevada camp. they do not think the HIV drugs will work; they are made specifically for HIV.

    i guess it remains to be seen what will happen to long-term sufferers who went many years w/out treatment. i wonder if our risk of cancer will remain high even if we are able to eventually beat the XMRV down.

    you are right...long-term inflammation comes with a huge slew of problems down the road - probably heart disease will be the biggest problem.

    wonder how long our livers will hold out too!

    perhaps we can glean a lot from HIV sufferers who weren't treated for a long time. apparently, they do not do "as well" as those treated immediately, whatever that means.
  3. kat0465

    kat0465 New Member

    will probably not be on our agenda, i had even asked my Dr about them, months ago before the XMRV thing ever came around.

    she said, nope. Aids is totally different from what we have, so im guessing all retro viruses arent created equal.
    ii have a feeling it's still going to be a long road, and like you ladybugmandy, im wondering if they can reverse the damage thats already been done.

    i do know that most of the aids patients that come in Dr. Salvatos office, look & feel way better than we do, it's a freakin Mystery.
    now that we know it's probably a retro thing, maybe we can learn a lot from aids, i would think so
    Kat
  4. stschn

    stschn New Member

    They said the first step would be a vaccination so that it doesn't spread into the blood supply. Which it all ready has- How are the CDC going to explain that if it's only in our head?
  5. slammed

    slammed Member

    omg i thought there was a medication protocol "waiting in the wings". (because of the AIDS-related work already done;) this is the "not-so-good" part of the good news about xmrv: the meds aren't ready.

    this drug process sounds like it could take quite a long time. there are so many very sick people right now, who need a really fast fix: those of us who are in the "life-is-threatened now" phase.

    management of symptoms. More management of symptoms, for now. so be it.





  6. slammed

    slammed Member

    it was a temporary panic
  7. ladybugmandy

    ladybugmandy Member

    i was reading about AZT and it was found, in the 80's, to inhibit murine retroviruses...so maybe it will help us quite a bit? i am desperate so i am going to take low-dose AZT (maybe 300 mg a day?).

    the first HIV drug, AZT, was rushed to market in 25 months - the fastest any drug has been approved i think. maybe a similar thing will be done for CFS?

    with a 17 million worldwide untapped market, the pharmaceutical companies will be pushing too.

    at the very least, they will rush a vaccine into production but that won't help us!

    my guess is that ampligen will be approved quickly. unfortunately, i am not sure everyone will be able to get an expensive IV drug....i am in canada...ugh

    love
    sue

  8. slammed

    slammed Member

    i recall back about mid-80's(?), when Ampligen was trying to come into the market but was rejected repeatedly by the FDA. i asked my V A doctor about it; the reply was "oh, but there are so many side effects." and now we hear that re AZT, too.

    well, i can say with certainty in retrospect, that i would have chosen Ampligen and the side-effects instead of living the past 25 years in a constant search for the next "best way" to micro- manage the apparently Unlimited cascade that has come at me non-stop, and that has led to the current fight for my life. what a complete waste of a life ,to spend all of one's time searching how to medically live until tomorrow. talk about a lack of Quality of Life! lol

    give me the AZT / give me the Ampligen. whatever will kill the cause of this disease, because it has almost finished me .

    Ladybugmandy you are probably right: how long can a heart stand up to a viral onslaught and the chronic inflammation? yes, i take anti-inflammatory otc Advil and health food store supps; Celebrex is a heart attack just waiting to happen; in this immune-compromised place , it is too dangerous probably. will you let everyone know what happens with your AZT 300mg? i'm wishing you all the best; believe me, i understand your fight.
  9. SpecialK82

    SpecialK82 New Member

    Hi Sue :)

    I haven't been posting on the boards in awhile as my condition is deteriorating. It's nice to see you on here today, I have read some posts and I'm so sorry to read that you are bedbound now. I am praying for you to get stronger and that this will only be a temporary stage.

    BTW - everyone else - I pray for all of us on the boards all time - each one of us deserve health and happiness!

    Sue - do you have a doctor that is prescribing AZT for you? If so, that is truly amazing, they must believe in CFS and understand the XMRV research. How were you able to find such a doc?

    Kristina
  10. LindaJones

    LindaJones New Member

    How do people get XMRV?
  11. SpecialK82

    SpecialK82 New Member

    Hi there,

    So sorry to read about your current state, I feel much the same way these days. I feel like an old car that's all rusted out and I spend my day affixing bumper stickers to it to keep it together, one of these days it will fall apart - I've actually expected it long before now, it's amazing how long the body will let itself be abused.


    Hugs to you,

    Kristina
  12. ladybugmandy

    ladybugmandy Member

    I just read a brochure from the WPI camp on XMRV. It said it would take 1 - 10 yrs to have treatment specifically for XMRV. I can't even last another year! lol

    I haven't been prescribed AZT yet but will get it one way or another. Everyone knows I am a few months away from going to Switzerland.

    Love
    Sue
  13. simonedb

    simonedb Member

    switzerland? girl i havent been paying close attention, last i heard you were with lerner right? but real discouraged about that, but now you are going to swtzlnd for azt? whats up in swtzrlnd?
    I had read azt was real nasty and killed a lot of aids patients intially until they realised they were giving it in too high of a dose.
  14. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Ampligen is not approved in U.S.

    Tina
  15. ladybugmandy

    ladybugmandy Member

    i think i heard that ampligen isnt that effective against XMRV...BUT my memory is horrible so this may be incorrect.

    i will be popping AZT as soon as i can get my hands on it. i don't care what happens because i have nothing to lose now.

    i will probably take 100 mg 3 times a day but i am still not sure about that. hope my liver doesn't reject it. that's considered a low dose i think.

    yes..it is a dangerous drug and can even damage the heart aside from all the other things it can do.

    some are saying to wait a few months until the in vitro studies are over but i am not sure i will.

    but maybe i will. also, maybe the local doctor will want to see a positive blood test before he agrees to give me the drug.

    sue