Returning to FFC / AntiViral Therapy

Discussion in 'Fibromyalgia Main Forum' started by bpmwriter, Jul 22, 2006.

  1. bpmwriter

    bpmwriter New Member

    it's been about 11 months since my last appointment at the atlanta ffc. i had a terrible crash during the time i was under their care and needed some time to get myself straightened out before deciding my next step. well, i have a phone consult set up for the first week of august. i am specifically interested in the anti-viral protocol. i didn't make any money last year so i can now get patient assistance for famvir. for those currently undergoing ffc anti-viral therapy, is famvir still the "tent pole" drug? i'm wondering if any of the centers are prescribing the nexavir with any success? or valcyte??

  2. bpmwriter

    bpmwriter New Member

  3. cherylsue

    cherylsue Member

    This is very interesting. I've recently had a significant relapse. My doctor believes the remitting/relapsing nature of my illness is due to HHv6. He prescribed Famvir in heavy doeses for 5 days, but I could only do 4 days, I reacted so strongly.

    I'd be very interested in what others have to say. I live too far from any FFC, but would consider them when/if I felt better.

    Beddridden and moving slow,


  4. mrdad

    mrdad New Member

    Good Morning!!
    You might be interested to hear that a Gentleman in my
    CFS-FM support group had recently been treated at Stanford
    by Dr Montoya for CFS with some positive results. The Pro-
    decol with Valcyte found about 70% improvement in his con-
    dition after over twenty yrs. of CFS.

    I don't know how he is doing this time, but I believe Dr.
    Montoya had other patients also with some considerable suc-
    cess. Believe he is in the process of doing further stud-
    ies with his method. May provide hope for many of us de-
    pending on the results and causes of the disorder itself.

    Have a great day,
    [This Message was Edited on 07/23/2006]
  5. jane32

    jane32 New Member

    I have been taking valtrex for 10 months now. I thought that was their stable antiviral drug.
  6. bct

    bct Well-Known Member

    for possible HHV6A. I was never tested for HHV6A at the time.

    I had no bad effects from the antiviral, and did feel a bit better. But as my doc. told me, if you take even a placebo knowing it to be a placebo, you will still feel a bit better. What a paradox.

  7. cherylsue

    cherylsue Member

    I bought some, but the suggested dose was six capsules twice a day. I take two and get a herx.

    It cost me $90 for a bottle of Ultraceuticals antiviral. Has anybody else used it with good results?


  8. bpmwriter

    bpmwriter New Member

    has anyone found that documenting their specific viral infections (ie. cyto, EBV, HHV6) helped support their disability case, or does it not matter?

  9. deliarose

    deliarose New Member

    Check out Tansy's latest post on the subject of Lyme.
    It might explain what seems to me at least, to be an increasing no. of lyme diagnoses.

    It might be pertinent to your decisions about what steps to take next.

  10. bpmwriter

    bpmwriter New Member

    i tested for lyme during my initial visits to the ffc. the result was an affirmative negative. no mycoplasma either. it's the herpes viruses that i have a problem with. so i'll likely be finishing off the acyclovir that i have and applying for patient assistance for famvir.

    i'm so happy to hear valtrex is working for you. i hope you continue to see gains!

    be well,
  11. ANNXYZ

    ANNXYZ New Member

    You might also consider taking turmeric , as it isa powerful antiviral . There isa site you can find called
    "cheap help" hosted by Ken Lassesen . You can google his name and cheap help and get more info .

    Some people have also taken a supplement for herpes viruses called monolauren which breaks the envelope of the virus .

    I think turmeric isa good idea , and I buy it throgh Puritan ( Puritan's Pride supplements ) .
  12. cherylsue

    cherylsue Member

  13. carebelle

    carebelle New Member

  14. fight4acure

    fight4acure Member

    I'm having some luck on Valtrex 500 mg twice daily so far. Just started it yesterday and amazingly enough today I have up to 50% less severity of pain, and up to 50% less fatigue!

  15. Hootie1

    Hootie1 New Member

    I have been at the full dose (4500 mg) since June 2, 2006 and don't feel any relief- I am amazed that you are feeling better only after a few days- that is great!
  16. cherylsue

    cherylsue Member

    Anybody here have experience with the FFC's new Ultraceutical antiviral capsules? I am on them, and I also take their Maitake D-Faction. I still fell crappy, though. I'm having a relapse.

  17. intensemom

    intensemom New Member

    I have not taken the anti-viral from FFC yet...was thinking about ordering it. I was trying to find out the ingredients...but they're not on the internet...does anyone know?

  18. Hootie1

    Hootie1 New Member

    What is the name of the antiviral capsule at the ffc?
  19. cherylsue

    cherylsue Member

    It is called Antiviral by Ultraceuticals. If you go into their store section, you can click on antiinfectives on the left. Follow that route and keep clicking for more info, and it will give you what's in it.

    I'm taking it, but I feel so crappy and burny, I can't tell if it's working or not. It's very expensive. I'm also taking Maitake D-Faction. Again, I'm desperate. I'll try anything once.

    Would like to hear from others. My CFS doctor did put me on a short run of famvir, but he doesn't like to prescribe antiviral RX because he says they are too toxic.

  20. jane32

    jane32 New Member

    Do they knwo what is causing your burning sensation? that is so weird and I am sure annoying.

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