cidofovir / forcarnet / artesunate

Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, May 22, 2009.

  1. ladybugmandy

    ladybugmandy Member

    hi all. has anyone here taken cidofovir or foscarnet? miracle of miracles, dr. lerner has agreed to consider them in my case....however, the out-of-pocket expense will likely ruin me.

    does anyone know how long the infusions go on? can maintenance therapy be with valcyte or do you have to use IV drugs again?

    thank you
    [This Message was Edited on 05/22/2009]
  2. denis321

    denis321 New Member

    I believe someone wrote a friend was on IV cidofovir for 6-12 months through Peterson.

    Years ago, there was an old Prohealth article about Peterson using IV foscarnet in three people where two recovered and one had to stop due to side effects. I just have this in my notes but can't find the article.

  3. denis321

    denis321 New Member

    old but interesting articles.

    Click the green "research, news, articles" tab above.

    Select "articles" for search.

    Put in foscarnet or cidofovir.

    I'll be interested to hear what Lerner says.

  4. ladybugmandy

    ladybugmandy Member

    thanks denis. i don't think i could afford 6 - 12 months of it. it's given twice a week and i would likely have to pay for the drug too because no one in canada would ever prescribe it for CFS. i don't even have any hard evidence of active HHV 6 infection.

    i once again brought up artesunate with dr. lerner over the phone, who refused to consider it, saying it has not been proven effective.

    i spoke to dr. ablashi who thought it was a good idea and said i should try artesunate before i try cidofovir. he said it sounds as if i have developed resistance to valcyte since i go through short periods of improvement and then long periods of deterioration.

    he said they have isolated resistant strains of HHV6 in several cases.

    i asked him if it was possible that i might turn out to be like some of the people i had read about, who recover after 5 - 6 years on valcyte. he said it is possible.

    i contacted my old doctor, dr. leo galland, and asked him about artesunate. he has used arteminisin for a long time and says it is non-toxic. i kept asking about artesunate, which i think crosses the blood-brain barrier better (actually artemether probably gets to the brain best but i think it can be neurotoxic).

    dr. galland agreed to try to contact dr. manfred marschall in germany and dr. paul cheney (who happens to be an old friend of his) and try to find out the dosing schedule of artesunate.

    he said he has patients who took arteminisin long-term with no ill-effects and thinks that even that crosses the blood brain barrier.

    dr. ablashi doesn't see the point of continuing with valcyte if i am going to try artesunate but i will continue with it anyway.

    this is a huge mess. i am going to lose my drug plan in march of next year and i am still as sick as i was before i started. and every minute of every day is unbearable.


  5. ladybugmandy

    ladybugmandy Member

  6. ladybugmandy

    ladybugmandy Member

    as usual, you are innovative. i can't tell you what i think of pine cone extract because i cannot think! lol

    are you sure foscarnet is a 6 week course of treatment? i thought it was multiple times a week for 6 - 12 months or something!

    i wanted cidofovir but i think its likely that if you don't respond to valcyte, you won't repsond to cidofovir (that's how is it for CMV).

    foscarnet scares me. many people have to stop treatment very early due to kidney issues and i am scared of something like that happening. foscarnet is the last line of defense and resistance would be bad.

    so you really think arteminisin is helping? that is great. i am always secretly surprised when an OTC med actually does something. its never happened to me.

    i can't get too hopeful about artesunate. after 18 yrs, it can't be that easy lol

    i really hope that the mycoplasma titres turn out to be high enough to treat. i just want to try something new!

    thanks, kelly. your posts are always appreciated.


    [This Message was Edited on 05/23/2009]
  7. ladybugmandy

    ladybugmandy Member

    kelly...i was thinking..this can't be a herx. i had a similar reaction back when i stopped valcyte. about 2 weeks after stopping the drug, i became dangerously ill. that has to mean that the drug is helping right?

    what was really scary about the last time was the development of fibromyalgia symptoms. they subsided when i restarted the valcyte.

    i ran into a guy once who knew someone who took antivirals for a year but they did not work. when he stopped them, he developed fibromyalgia and now is bedridden with both CFS and FM.

    i guess only the strongest virus is left when you stop the antivirals and it spreads virulently.