Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Sep 25, 2008.

  1. ladybugmandy

    ladybugmandy Member

    hi all. i am desperately searching for any canadian on antivirals who was able to obtain the drugs through a government subsidized program.

    if you are on disability or have the trillium health plan (this is in ontario) and are able to obtain valtrex and/or valcyte please please let me know how you did it!

    thank you!
  2. ladybugmandy

    ladybugmandy Member

  3. ChyC

    ChyC New Member

    You may be able to get it through an special form that has to go through your doctor and then approved by the disability drug program.

  4. ladybugmandy

    ladybugmandy Member

    thank you. i know about that form...i think its called the individual clinical review. you have to send a lot of literature including published studies of the medicine working.

    i spoke to a pharmacist who works in that dept. i asked him if anyone had, to his knowledge, obtained valcyte through the program for CFS. he did some research and said he could not find anyone.

    its still considered so experimental and is so expensive..i am quite sure i would be denied. but i may have to try anyway.

  5. ChyC

    ChyC New Member

    I wish you all the luck in the world and hope you can get approved. I have one med I have to pay for but would get it if I had seizures from what my doctor knows. He checks for any changes in the rules for getting it paid through provincial disability - Ontario.

    I'm waiting patiently.
    :) Chy

  6. ladybugmandy

    ladybugmandy Member

    thank you:) i will keep you posted.

    all the best
  7. ChyC

    ChyC New Member

  8. ladybugmandy

    ladybugmandy Member

  9. shanwill

    shanwill Member

    I think there could be a way to get it covered under the gov't drug plan if the doc writes the script and says it's for shingles treatment.

    A friend of mine also has CFS was able to get it this way I believe.

    I have tried Valtrex for about 3-4 mths and didn't notice any difference myself.

    Good luck,
  10. ladybugmandy

    ladybugmandy Member

    hi shan. thank you.

    the problem is..shingles treatment lasts only about a week i think.

    you would need to try antivirals for a long time to see if they work!

  11. ladybugmandy

    ladybugmandy Member

    hi all. i contacted dr. byron hyde at the nightingale foundation. he said he is in talks with roche to start a free trial of valcyte in canada but it would be contigent on a person having positive IgM.

    i told him this was unacceptable....IgM is rarely positive after long-term infection!

    UGH....what a joke. suffering canadians are either going bankrupt or dying.

    he also said long term valcyte usage risks liver damage.

    i've been on the damn thing for 1 1/2 year now. wonder what's going to happen to me later on....i wonder if monitoring AST and ALT is enough???
  12. simonedb

    simonedb Member

    hey you spoke with dr hyde?i have the impression he is one of the best and most knowledgeable on cfs. what was it like talking with him? do u know much about him to recommend or not?
    jodi bassett has article here from 2006 referencing him and tests he recs for dx.
    I would love to get spect from someone with his knowledge of cfs in u.s.
  13. lucky

    lucky New Member

    I was a patient of Dr. Hyde for more than one year and only can report that he was the least help of the many doctors I have seen before and stopped my visits with him. He has done nothing for me except sending me to get tests and never following them up. They ended on his computer which he loves and stayed there. I just lost my trust in him. I am sorry to deflate this 'socalled' Canadian expert on CFS.

    Best wishes, Lucky
    [This Message was Edited on 10/24/2008]
  14. redhummingbird

    redhummingbird New Member


    Doe Roche have a patient assistance program for Canadians? Or maybe contacting K. Loomis at the HHV-6 Foundation?

    It's not fair that this has to be so difficult.
  15. ladybugmandy

    ladybugmandy Member

    hi all. no roche doesnt have a patient assistance program in canada for valcyte.

    dr. hyde was never taking new patients when i tried to contact his office long ago.

    he seems more into research from what i have gathered. i haven't read anything on the internet from anyone who saw him and who knows.

    i have never actually spoken to him in person...i emailed him once through the nightingale website and he wrote back many days later. i sent him another email but did not receive a reply.

    it seems that the "main" CFS doctors in canada aren't doing antivirals which baffles me. i am so lucky i miraculously found a local doctor willing to prescribe them. even dr. lerner was surprised i was able to find one.

  16. simonedb

    simonedb Member

    you guys are bumming me out.
    so lucky he didnt help you?!
    what do you think of his meticulously documented problem/test list for cfids/me? it sounds quite valid and even talking about the coagulation problem that some people at yahoo groups cfs_protocol and experimental discuss. His book seems the most comprehensive.
    but maybe he does just like to do the research and writing and not patient care, he is rather aged too maybe he is done with wanting to be with the patients.