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First Cidofovir Infusion Done!

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

  1. Ema

    Ema Senior Member

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    I finished my first cidofovir infusion. So far, so good. I am tired but don't feel dreadful. Everyone at the hospital was very nice and the process was easy if tedious. Though everyone was a little mystified why I was not able to get these done closer to home...I just said me too! LOL. They are going to let me start them a little later next time though so I can eliminate one of the two nights in a hotel and just drive up the day of the infusion. Every little bit helps.

    Now just for some more probenecid and we will call it a day!

    Ema
    Tristen, Valentijn, vli and 3 others like this.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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  3. SOC

    SOC Moderator and Senior Member

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    Great news, Ema! Can you share where in the midwest you found somebody to give you cidovir infusions?
  4. Ema

    Ema Senior Member

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    Dr Lerner
    snowathlete likes this.
  5. SOC

    SOC Moderator and Senior Member

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    Oh, duh! :D
  6. vli

    vli

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    hi Ema, could you possibly tell us whether you are taking one infusion per week for the FIRST TWO weeks, because that's what drugs.com says is usually the "induction" phase? or is Dr Lerner doing it his own way and not bothering with giving you that "extra" induction injection in the second week? Thank you so much!!!

    vli
  7. Ema

    Ema Senior Member

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    Hi vli -
    I am having one infusion every two weeks. I am not having that extra induction infusion in the second week.

    I also saw that on drugs.com and I thought about asking why not, but have not been very successful in getting answers to my questions unfortunately.

    Ema
    vli likes this.
  8. Tristen

    Tristen Senior Member

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    That's great Ema, I look forward to following your progress. The Tx helped me tremendously......it was so worth all the effort and cost.
    Valentijn, vli and Ema like this.
  9. Ema

    Ema Senior Member

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    You have no idea how happy it makes me to hear this!

    I'm so glad that you are feeling better...

    Ema
  10. Tristen

    Tristen Senior Member

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    Yea Ema, I estimate 60-70% improvement on that tx. Many do even better than that.

    It eliminated my OI completely. We still get a good laugh describing what I looked like when I first crawled into his office. I looked very beat up, very sick unable to stay upright more than a few minutes. Could not drive. After 6 months on the tx, I was upright and driving myself the 8 hours to his office. I finished that Tx end of 2009 and have not relapsed.
  11. Kina

    Kina Moderation Team Lead

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    Good Luck with your treatments Ema. I hope you get some good results. :)
    Ema likes this.
  12. Ema

    Ema Senior Member

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    How were you after just 3 months? That is all that has been prescribed and I'm a little concerned that maybe I will need more than that. But maybe that is just the initial treatment and then he reevaluates based on progress to that point.

    Thanks for the encouragement too. I'm pretty beat up feeling today after it all. The trip was more tiring than I originally thought apparently. Two weeks to rest up!

    Ema
    vli likes this.
  13. Tristen

    Tristen Senior Member

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    My experience was that the 3 month thing, is all about the insurance. That's the recommended length of time for tx with that drug for it's indicated purpose. An astute doc can justify it's use, and therefore insurance coverage beyond that point.

    I'm not sure about people only going 3 months for me/cfs. I was thinking 6 months was the minimum with Dr P. I may be wrong. It was at the 3 month mark that I could discern significant improvements. I continued to improve up to 6 months, then the improvement slowed, but did continue. I plateaued around 9 months, but continued on for a full year.

    I would suspect that your doc will re-evaluate at 3 months and then continue on for another 3 months. But then, possibly your specific stats show that 3 months will do it for ya. Only your doc really has that answer.
    Ema likes this.
  14. Ema

    Ema Senior Member

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    Second infusion done successfully!

    I do feel kind of spacy/dizzy, irritable and headachey today though. I wonder if that is a reaction to the drugs or to the trip in general? Or possibly just my personality at this point!

    Ema
  15. vli

    vli

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    In case anyone's interested, I'm one infusion behind Ema and just had my first infusion yesterday, and I really think I feel bad mostly from the probenecid NOT cidofovir. If anyone wants to ask me anything u can PM me...
  16. rebar

    rebar

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    Tristen it is wonderful to hear of successful treatment.
    Ema and VLI what did your blood work look like for viral markers,
    and Ema did you have to push Lerner for cidofovir.
    I live in NY and it may be beyond my ability to travel to the extent required,
    anyone out there making it work with Lerner-cidofovir and air travel?
    snowathlete, Tristen and vli like this.
  17. Ema

    Ema Senior Member

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    I would have to look up the exact numbers but I was positive for EBV, CMV and HHV6.

    No, Lerner brought it up to me. It really wasn't even on my radar honestly. I figured I would get Valcyte.

    I think it would be pretty expensive if you have to fly in every two weeks. It's expensive just driving! I get up really early on Monday morning to go straight to the hospital for the infusion, spend the night in a hotel, see Lerner Tuesday morning and then drive back home.

    I would give anything to be able to do this closer to home. It would make a huge difference, both physically and financially for me.

    Ema
  18. SOC

    SOC Moderator and Senior Member

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    There are some ME/CFS specialist in NYC. Is that more accessible? Maybe one of them does Cidofovir.
  19. vli

    vli

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    I had been trying to get cidofovir there as well for four months before I found my current source. You can call them up yourself to check but I'd done so and know for sure these docs WON'T give it:
    --Dr Enlander
    --Dr Levine
    --Dr Natelson
    snowathlete likes this.
  20. rebar

    rebar

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    Thanks SOC and VLI, I actually live right out side of NYC and Levine is my doctor. She is a little afraid of cidofovir.

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