valcyte, Roche patient assistance and CFS

Discussion in 'Fibromyalgia Main Forum' started by cisasnaps, Sep 20, 2011.

  1. cisasnaps

    cisasnaps Member

    I've had cfs for over 15 years; I'm in the worst relapse ever and while I had heard of ampligen, valcyte, etc I had no idea how much it has helped some. My understanding thus far is having viral markers for HHV6 and EB and CMV (trifecta, woohoo!) can mean these drugs have the best chance.
    My doctor prescribes it, but just tells me it's about 2k a month. So, my heart has gone from Oh NO to holy cow, this could happen multiple times in the past week.

    Here's my question: People are getting patient assistance from Roche for valcyte. When I go to the website, I'm reading that it's only for 1. HIV, 2. HCV and 3. transplants.

    Can someone who has had success with the Roche plan and valcyte for CFS please help me out? I feel like I'm looking at a puzzle with a piece missing!!

  2. Mikie

    Mikie Moderator

    They are far more effective than antivirals, especially with viruses in the Herpes Family. You can read more about them in the Store here and if you call, they will tell you which ones target which pathogens. The FDA stopped allowing TF marketers from advertising which pathogens they target in the printed material, unfortunately. TF's aren't cheap but they are far cheaper than expensive AV's which may have to be taken for years. They require refrigeration. They do not use any pathogens, live or dead. Through some proprietary process, they extract the info that pathogens use to infect us and put it in powdered eggs and/or colostrum. I advise anyone trying TF's to go very slowly as they cause a big immune response.

    TF's are like a small oral vaccine and immunity isn't permanent. Down the road, one will have to take them for a few days like a vaccine booster.

    I took AV's for years and, while they helped, it wasn't until I took the TF's that my chronic stealth viral infections went into latency. I also had heparin injections as part of the treatment to get my infections under control. Pathogens hide out in the excess fibrin in the blood, a condition common in those with chronic infections.

    Do some research on TF's on the web. I recommend giving one's doc the info. Just don't be surprised if the docs know nothing about TF's. Good luck.

    Love, Mikie
  3. cisasnaps

    cisasnaps Member

    Thanks for the thoughtful response. I read up on TF, and it seems they vary quite a bit. I found Vitacost has one with 950 mg. I am thinking of combining this with the antivirals, I know my immune system is going to be weakened (imagine that!). Sure looks promising and not harmful!

    I'm still hoping to learn how those of us with CFS fare with Roche on patient assistance. It looks pretty promising, on the other hand no one at my doctor's office mentioned the program...

  4. Mikie

    Mikie Moderator

    Good luck with the program. I think most of those programs work the same way and are actually very good. The ones I have seen do not include assets, just adjusted gross income and the guidelines are pretty generous.

    Love, Mikie
  5. redhummingbird

    redhummingbird New Member


    I was on Valcyte for 8 months and received it through Roche's patient assistance program. It was fairly easy to apply.

    I had to provide proof of income and my insurance info along with a letter from my MD.

    Roche would deliver a 30 day supply every month. I found them to be friendly, helpful, and understanding.

    I have ME/CFS. They didn't ask about my diagnosis.

    The HHV 6 Foundation has a forum (I hope this is ok to post) where you can also find info on Valcyte and patient assistance.

    Good luck!
  6. cisasnaps

    cisasnaps Member

    It sounds like the TF's on this site are 'better' and more targeted. I can't afford them, so found one on Vitacost that is 950 and affordable. Mikie, think they are still helpful? I am still waiting for Dr. Enlander to get the results of the labs I had done, he may recommend vacyte, not sure. I have been reading about very varied results and lots of side effects but I'm hopeful. Thanks for the confirmation that Roche doesn't limit helkp because of diagnosis!!!

  7. Mikie

    Mikie Moderator

    I can't speak to the quality of things I have not tried. I do know that ProHealth has the highest of quality stds. for their products so I know I can count on them.

    Try the program for free meds if your doc will help you to see what happens. You only want to try one thing at a time.

    Good luck.

    Love, Mikie