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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 almost am afraid to say anything...but I feel much better all of a sudden. Almost, dare I say, normal? Normal with a side of fatigue, anyway.

    I actually drove my own self to a yoga (for the elderly and otherwise decrepit) class yesterday for the first time since about 2009. The class was a little less than exciting, but that's not the point, of course.

    I was on an upswing prior to starting cidofovir but I'm really hopeful that this is working.

    Fingers crossed it continues!

    Ema
  2. SOC

    SOC Moderator and Senior Member

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    Congratulations!

    That's the way Valcyte worked for me. Suddenly I felt much better. It's almost eerie, isn't it? And hard to believe it's real.

    FWIW, once I got that "much better" feeling, I still had to deal with low blood volume before I got rid of the persistent fatigue.
    Sparrowhawk and Ema like this.
  3. Ema

    Ema Senior Member

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    Yes, after posting I had an almost uncontrollable urge to delete the post just in case I angered the gods or something! LOL. It totally doesn't feel real and let's face it - it could disappear tomorrow too. But I think I'll go shoe shopping today just in case...:)

    Ema
  4. maryb

    maryb iherb code TAK122

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    Ema I've got my fingers crossed for you too.
    The last time I was normal was when I recovered the first time after getting ME - I just woke up and felt different, I started putting plants in and moving around doing things normally. We know the difference - thats what doctors don't get.
    I'm superstitious too - well after this illness wouldn't anybody be - difficult to post about things working - trying to help/inform/inspire others but at the same time don't want the gods dumping on us!!
    Ema likes this.
  5. SOC

    SOC Moderator and Senior Member

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    :D As I recall, I waited some weeks to report the sudden improvement because I just couldn't believe it would stick -- but it did. And I had the same "anger the gods" feeling, too. It must be because it's so clearly much better and so sudden that it almost feels magical. :angel: I don't advise pushing your luck, though. ;)
    Valentijn and Ema like this.
  6. SOC

    SOC Moderator and Senior Member

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    There must be something in this suddenly feeling better thing. It's not like the virus is suddenly gone, I wouldn't think. That should take some time. Maybe it's an immune system thing? Cytokines maybe?

    This reminds me of how ME/CFS hit me at first. It was very sudden -- from normal to a mess in a couple of hours. What's with this illness and these weird (relatively) sudden changes?
    vli likes this.
  7. Ema

    Ema Senior Member

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    So I have the same nurse at the hospital this time as last. When I walked in, she said I looked healthy! So either the cidofovir is working or that Dolce & Gabbana foundation sample I found in my bag and applied in the car is MAGIC! Maybe I should buy some just in case!

    Ema
  8. Tristen

    Tristen Senior Member

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    agreed....it's most likely Valcyte limited like that by some docs. Valtrex is pretty benign stuff and I've never heard of it being held at 9 months with me/cfs.
  9. Tristen

    Tristen Senior Member

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    Vi and Ema, hang in there.....I was over 3 months before being able to discern any changes. Glad your both tolerating the drug.
    Ema and vli like this.
  10. Ema

    Ema Senior Member

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    So the first thing the doctor said to me is that I look much better today! So I guess it must be true...either that or that foundation makeup REALLY works!! He was very pleased with my progress and bumped me up two points on his scale.

    I asked again about the Valtrex and he said it could be taken forever if necessary. So who knows what he was talking about last time.

    He also wants me to take Probenecid every day now instead of just around he infusions. Apparently it potentiates the Valtrx as well. I wonder what it will do to my below range uric acid levels though. Plus it gives me a headache and stomach ache. He said if it made me feel unwell, I could stop it. So I'll try, I guess!

    Ema
  11. Tristen

    Tristen Senior Member

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    Looking better means a lot cause we have been so ill for so long that I'm sure an experiences doc like he would see changes before you. Glad your making progress. Always does my heart good to hear of any progress made out of this brutal disease. Thanks for sharing your journey.
    vli likes this.
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    probenecid is used alot to increase the blood levels and half life of alot of antibiotics and also works on antivirals.
    can be a cheaper way for someone to get higher doses of antivirals without having to increase the dosage??
    vli likes this.
  13. vli

    vli

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    heaps, my thoughts EXACTLY (EXCEPT YOU THOUGHT IT BEFORE I DID!!!!!!)
    BUT, THE TRAGEDY IS Ema is CLEARLY MUCH MUCH STRONGER than me (comparatively) since she can still take all those probenecid tabs on her infusion days and recover pretty much OK maximum 1-2 days after, whereas it'd take me a whole WEEK to recover from doing the same thing, and it's also clear from Ema's other posts that she's way stronger since over her 20 year illness she's seen near-normal periods of health, a FAR cry from what I am.

    so bottom line is I just can't follow Lerner's recommendation to Ema even if I were allowed to or wanted.

    :cry: :cry::cry:
    maryb and ukxmrv like this.
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    you can only do what u can do, just keep plodding along. Medication dosages etc are tolerated at different levels by different people.

    Dr lerner though does seem to use very high doses of antivirals like valtrex, famvir, while others have used much lower doses with some success. If one doesnt have health insurance to cover 4 grams a day of valtrex like dr lerner prescribes, it would cost one an arm and a leg.

    When i was taking augmentin once a day with probenecid i was taking 2 x 500mg. A few years ago i used just 1x500mg probenecid a day with famvir. This was prescribed by my doc. It is hard to find info on probenecid dosage and antibiotic/antiviral levels and how long it increases the drugs life in the body??
  15. Ema

    Ema Senior Member

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    First cidofovir done at local hospital.

    Pepperoni pizza >>>> chicken salad sandwich. Beaumont Hospital is going to have to up their food game!! :)
    maryb, Little Bluestem, Sushi and 2 others like this.
  16. Tristen

    Tristen Senior Member

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    Really a blessing that Dr Lerner is willing to let ya do the infusions remotely like that. Very happy for ya. Enjoy that extra slice (or 2, or 3). Love chicken salad sandwich too.
    vli likes this.
  17. vli

    vli

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    hi all,

    I wanted to post an update of how i'm doing since i haven't. I had my first infusion on 11th jun, 1 on 18th jun, 1 on 2nd jul and last one on 16th Jul, and then i was supposed to have one on 30th Jul but missed it bc I was so bedridden and sick, and i haven't had any more since. Because I didn't react to the first three and also bc of the testimonies of ppl I'd read who tolerated Vis well, I assumed I was fine, but it seems now i'm one of those who're not... can anyone tell me of anyone they might know or have heard of who reacted as badly to it as I do? I don't know what to do now because my doctor frankly isn't experienced in giving Vis and dosage is calculated by weight, so neither he nor I have any clue as to how to, say, lower dosage, or if that may produce viral resistance. I haven't left my home in six weeks so i'm not having any more infusions in the near future, that's for sure, totally bedridden. I know there's a chorus of ppl who were uncomfortable with the fact that i'm taking vis from a doc here (Hong kong) who's not well versed in its use but I wanted to point out that it wasn't an easy thing to decide--if you were me and lived in Asia, so far away from the US, would you expend the huge sum of money required to go and live in the US to get infused--if you knew someone in ur hometown willing to do it? I'd already spent tons of money on living in nyc last year and doing ampligen. Sorry to rant but just so desperate. anyway i'd be real grateful if anyone cld tell me anything abt anyone they know who's had a similar reaction, or if they know by some means (say through something that dr Peterson might've said) about what they do in such a situation, i'd be real grateful. specifically if anyone knows whether vistide "builds up" in the system, since even when I was on the full protocol dose of ampligen back in NYC, I NEVER had such problems.

    THank u!
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I got nothing vli. Just hope u can feel better soon.

    Cheers
  19. Tristen

    Tristen Senior Member

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    Really bummed this has happened to you. I know of and relate to your desperation. Sorry, that I don't know anyone to connect with who has had to stop Vistide due to unwanted side effects. I just know they are out there. It certainly happens. I believe the problem most often leading to sesation of the drug has to do with kidney and/or liver tolerance problems. Others just get too sick on the drug. I did go through a short period of feeling like I was toxic on Vistide. The doc ran a lab to check and I was far from it. I did get through that, and so who knows what it was. Herxing as far as I know is not common with treating viruses. Not sure on that one.

    Would I go to your extreme (Hong Kong, etc) to do the treatment? Well, of course I've been so sick that anything and everything was on the table as a possible treatment. But I would look into the docs credentials. I also would also be quite reluctant to treat without having labs showing active herpes infections, in particular CMV, or maybe even HHV6.

    I would dig deeply into diagnosing what this new reaction is all about. Maybe it's just a bump in the road. But I would want to know for sure......Vistide is a dangerous drug.

    Hope things look up for you and a little grace comes your way for some reprieve.
    maryb likes this.
  20. Ema

    Ema Senior Member

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    Well, I've overdone it.

    Cidofovir on Monday, then instead of resting in the car as I do normally on Tuesday, I mowed the field across the street in the noon heat. Then on Weds we drove 7 hours to get the puppy and Thursday I did Hizentra. That was the straw that broke the camel's back and I nearly passed out when I got up.

    I am having big time low cortisol symptoms and am dizzy beyond belief. I hope I have not caused a permanent setback.

    Have any of you overdone it and managed to recover again in a reasonable amount of time?

    Ema
    Tristen likes this.

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