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First Cidofovir Infusion Done!

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Ema, May 20, 2013.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I dont know what to make of lipkins work when u compare it to say lerner, peterson and klimas etc who treat infections with some success. I dont understand how he cant find it but others can????
  2. Ema

    Ema Senior Member

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    I don't understand either. And I've taken way too many meds and supps that didn't help to call the antivirals and antibiotics that did help a placebo.
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    exactly, if placebo was the answer i would have been cured years ago.
    I think this illness is just an ongoing battle, the underlying cause/immune dysfunction is whats letting these infections in, sort of like those zombie films, we keep killing them off but more keep coming, lets hope we dont run out of ammo.

    My wish list would be to do the antivirals and abx with ampligen and throw in some xyrem so i can sleep well and growth hormone which the cost also puts it out of my league. Thats what i think would help.
    Iquitos and SOC like this.
  4. Ema

    Ema Senior Member

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    I would kill to get my hands on some synthetic adenosine deaminase enzyme but at $4000/vial that isn't happening unless I win the lottery.

    I have a couple of friends that tried Xyrem for severe insomnia. That is some weird stuff! Neither of them thought it worked well enough to make the side effects worthwhile though one friend still uses it from time to time.
  5. SOC

    SOC Moderator and Senior Member

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    Exactly!

    Dr L gave me no assurance that Valcyte would give me remission. He said something more like, "We'll see what we can do for you." I was not expecting a miracle. I'm not susceptible to placebo effect. I've taken a variety of treatments without much effect, so I wasn't overly optimistic about Valcyte treatment. Nevertheless, I had a huge improvement (not a remission) from Valcyte over the course of 2 years -- bedbound to working part-time. That is not placebo effect.

    I don't know why Lipkin is not finding infections yet. He has not given up on the idea of infections in ME/CFS, so I'm not, either. I think we're just going to have to wait and see what the research brings, as hard as it is to be patient.
    ukxmrv likes this.
  6. Ema

    Ema Senior Member

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    My insurance will never cease to amaze me. I figured it would be a huge battle to get cidofovir, Valtrex AND Valcyte covered but not a peep out of them. $0. It's nuts. They balked at a muscle relaxer last week!
  7. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Ivey's a smart dog. Maybe you could train her to 'fetch' you some. :whistle:
    maryb and Valentijn like this.
  8. Valentijn

    Valentijn Activity Level: 3

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    It'll be like The Doberman Gang! :rofl:

    I loved that movie when I was a kid. I fantasized about doing that with our chubby dachshund :cool:
  9. Ema

    Ema Senior Member

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    If I told her it was food, she'd get it for me in a heartbeat! :)
    maryb and Valentijn like this.
  10. Iquitos

    Iquitos Senior Member

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    Is this something that veterinarians use? Hmmm?
  11. maryb

    maryb iherb code TAK122

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    Ah but even if they did, could Ivey pretend to have ME/CFS? now thats a big ask even for a smart dog.
    Valentijn likes this.
  12. Ema

    Ema Senior Member

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    No one is mistaking Ivey for having ME/CFS. She is currently in her kennel after making me chase her barefoot in the cold rain across the neighbor's yard. I guess it was my own fault for letting her out before I had my shoes and coat on. It was really upsetting though. She wasn't listening at all and I got mad and stressed!
  13. maryb

    maryb iherb code TAK122

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    @Ema
    they always do it when we least need it - yeah I know they don't mean to but even so............
    hope you're okay now ema - puppies and deaf ears and all that.
    Ema likes this.
  14. Ema

    Ema Senior Member

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    So first Valcyte down the hatch...wish me luck. I am just about out of enthusiasm for side effects this week (month, year, life).
    Valentijn and heapsreal like this.
  15. SOC

    SOC Moderator and Senior Member

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    Good luck! You could easily be one of those with no side effects from Valcyte. :)
    Little Bluestem and Ema like this.
  16. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Might be an easy start for you since u have been on other antivirals. This was suppose to have happened to a few i remember reading about in the past??
    maryb and Ema like this.
  17. Ema

    Ema Senior Member

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    So I woke up this morning on day 3 of Valcyte feeling quite fabulous.

    Since there is no way to know how many fleeting moments this will last, I quickly bundled up the puppies and headed off to the park where we romped after sticks in the freezing creek and sniffed all of the spots.

    I really needed a break. I just can't believe I actually got a little one. :)
  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Congrats! Did you sniff all of the spots too? :) Sounds like fun!

    Sushi
  19. maryb

    maryb iherb code TAK122

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    How fabulous for you @Ema - that wonderful feeling of being out in the fresh air and having the energy to enjoy it, and the dogs too, we all miss it, fingers crossed for you
    Ema likes this.
  20. Ema

    Ema Senior Member

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    I supervised the sniffing!
    Little Bluestem, Sushi and Valentijn like this.

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