FFC Dallas Update - Famvir - EBV - Antivirals

Discussion in 'Fibromyalgia Main Forum' started by intrigue, Feb 1, 2006.

  1. intrigue

    intrigue New Member

    Hi Guys,

    I've been getting questions about what kind of reactions I've had, and how I'm doing with the FFC treatments.

    I'm in month two going on month three of the fairly intense anti-viral treatments for EBV and mycoplasma.

    HERE'S WHAT I AM DOING / HAVE DONE
    * Heparin injections twice daily + Boluoke

    * 12 Viral Plus IV's at the FFC over two months (DONE!)
    * 500mg Famvir - 1 1/2 pills 3 times/day
    * Doxycyclene
    * Transfer Factor 4000

    * T3 50mg just upped to 65.5
    * Cortisol - on my last bottle, then I am done
    * Nystatin - also on my last bottle

    * Maitake Mushroom (immune system)
    * NK-Stim (immune system)
    * Release and Renew (joint stiffness)

    WHAT REACTIONS DID I HAVE?
    FFC told me up front herxing would be worse on IV's 6-10. It hit me on #7. I felt like I had been hit by a bus, "instant flu".Fortunately, if I took Tylenol and went to bed early, I was ok the next day. This lasted for IV's 7-10 for me.

    My worst reactions were the stomach problems. Long story short, for 3-4 weeks, I had very very very VERY bad stomach problems. I can't really say if it was the famvir, the iv's or the transfer factor ... or the combination. It landed me a trip to the GI doctor and a colonoscopy. I get my results of friday, but it looks like everything is going to come out ok.

    HOW DO I FEEL?
    Overall I am feeling pretty good. My tummy has calmed down. I've been sleeping better,and have more energy. I think once I stop the famvir and doxy i'll feel ALOT better. Antibiotics always make me feel sluggish.

    On the down side, I've done something to my back which I was hoping was another herx. It looks like its not. So ... some blinding back pain is tainting my rosey outlook. I assume it will pass.

    I am looking to try to start exercising. I know I won't truly get better until I get moving and lose all this extra weight the fibro has graced me with. But hey .. at least now it seems like its possible. :)

    COUPLE OF NOTES AND THOUGHTS (unrelated to each other):
    * If you have to have a colonoscopy, I highly recommend the visicol (tablet) preparation. It has pretty easy.
    * FFC's have two viral IV's:the SuperViral (clear) and the Viral Plus (yellow). It seems to vary which doctor prescribes each one. I had the Viral Plus.

    Gosh I am long winded. :) I'm happy to answer any questions anybody may have. Happy to help anyway I can.

    Cheers!
    Ellen

  2. pawprints

    pawprints New Member

    Which doctor do you see in Dallas? Are you happy with him and the rest of the center?

    Thanks.
  3. intrigue

    intrigue New Member

    I see Dr. Kippels.

    And yes I have been very happy with him as well as the entire staff. They have been great.
  4. jane32

    jane32 New Member

    WHat virus where they treating you for?

    Did you see a difference with the IV's? I only had 4 standard (50% of the B's)and didn't see much of a difference. I would feel so sick to my stomach and tired when I got them but would be good for only 1 day. Not enough for me to go through the IV's -I hated being hooked up to it. I think if I did it again I would get sick. The smell bothers me more then ever now even when I walk into the place.

    I was told to get the supervirals but never tried them. I figure if I don't get better I can try it at the end.

    Can I ask what type of tummy problems you had? Diarrhea or constipation, pains? I had a colonoscopy years ago and my prep was awful. I am glad to know there is some other options out there.

    Have they checked your blood levels yet? Had anything changed?
  5. intrigue

    intrigue New Member

    For Epstein Barr - I got sick almost three years ago, was diagnosed with mono/epstein barr. I never got better.

    I only did the viral plus iv's. No cream corn smell there. I didn't feel much for the first six, then I was sick for 7-10 and then 11 and 12 were okay. I don't think the expectation is that you will feel better immediatley though.

    I've noticed a difference in how I feel after going through the whole ordeal (all the treatments). No way to say whether thats due to the IV's or not. I've been basically doing the treatments my doctor has told me to do. At the same time, he's been respectful of the things I've said I didn't want to do.

    As far as my tummy problems, lots of diarrhea, nausau, cramping, abdominal pain, and vomiting. A load of fun indeed!


  6. MKlady

    MKlady New Member

    I was one of those asking since I had such a bad reaction to Famvir in January. So I'm doing TF 4000, Miataki Mush, Colloidal Silver spray for EBV now, plus Zithromax for myco and c. pneum. NK Stim and Mitomax, B12 for immune.

    Bouloke for blood. Nystatin and yeast diet for yeast. Trazadone & Ambien for sleep. Plus T3/T4 (upping it this week to 2.0 grms), pregnonolone, cortisol, DHEA, testostorone. Plus vitamins, of course.

    I'm crawling out of the hole I dug with Famvir - felt really sick and tired. Now just tired - lots more tired than before I started it. Maybe another couple of weeks to that level, I hope.

    Haven't started Heparin yet - won't until we find an AV I can take or spend some more time treating with supplements. No sense knocking loose the bugs until we can treat them. Am supposed to try Acyclovir in the next week or so.

    As far as Viral Plus IVs, I've had three and didn't have much reaction other than a general unwellness for a day or so. Had better poops, though - must be the magnesium - so I re-started 500mg Mag at bedtime.

    Later this month will get the Super. I'm drive 4 hours to FFC Las Vegas so I don't go more often than monthly. To tiring and expensive. Oh well.

    Thanks for letting us know your progress. I'm glad it's working! I'm looking forward to feeling better too. Attacking the underlying infections makes sooooo much sense!
  7. jane32

    jane32 New Member

    The vomiting would have really scared me.

    Hmm..maybe I will try the superviral at least once.

    Everyone seems to have so much trouble on the Famvir. I recommend the Valtrex. I only herx with a sore throat on and off for 15 days and that was it.