Success with Antivirals

Discussion in 'Fibromyalgia Main Forum' started by Tiggereh, Jan 7, 2007.

  1. Tiggereh

    Tiggereh New Member

    Some Success with Antivirals

    I have learned a tremendous amount about my conditions and things to do to improve them here. I wanted to share some of my recent successes with anti-virals to encourage those going that route that it can be helpful and it can be done.

    For some context, I was officially diagnosed with CFIDS, FM, IBS, Candida, Hypothyroid and a host of other issues in May of 2006. I had been ill for a long time before that with primary issues of constant infections, flu like malaise, an unexplained weight gain of thirty pounds in the space of a few weeks, and started developing pain/tension in a number of key areas. I received a diagnosis from my PCP, followed by a visit to a rheumatologist, and ultimately in June of last year ended up in the care of the FFC. A sharp decline happened for me over the winter of 2006, from what I would term to be struggling functional to non-functional. Essentially I thought that I was dying.

    Their initial approach was to stabilize the key functions such as immune system, sleep patterns, etc. They conducted their usual bloodwork panels (which there are good posts on this site about) and I was found to have very high levels of EBV and other viruses. After a course of nystatin, diflucan, and following the Candida diet with mostly compliance, we then set about tackling the viruses. My program included Valtrex, transfer factors 1000, and the FFC Ultraceuticals anti-viral supplement. My initial dose of Valtrex was 500 mg per day, which I herxed like crazy for about a week and then woke up one day and for the first time felt better. I then upped my dose to 1000mg, herxed like crazy for a couple of weeks, and then woke up again feeling significantly better. We then did a push to 2000mg, and I herxed worse than anything I have ever felt. This one did not end, and we ultimately dropped me back to 1000 mg and after a few days things cleared and I maintained that doseage. After six months on this program, I repeated my tests and I am negative for EBV!!! I have discontinued the Valtrex and Transfer Factors for now, although I will continue with a light dose of the anti-viral supplement for the near future. This is the first major success that I have had with these diseases. It was not easy. I felt much of the time like I was not functional, and like I had an awful flu. However, that’s not unlike what I felt like before I had the treatment, and ultimately I found it tolerable.

    It has paid off. I am feeling better, my immune system has improved dramatically, my pain has dropped off quite a bit, and best of all, the fatigue has started to subside and that was the worst issue for me. To be fair, this has just been one part of a comprehensive program involving an assortment of treatments, medications, lifestyle alternations. But this success has led me to believe that I can beat this thing.

    In my own personal program, my next steps are really about focusing on rebuilding my reserves through diet, exercise, supplementation, and continuing to beat away at the little beasties by conquering candida and rebuilding my immune system overall. I am hopeful that this information will be helpful and encouraging for those who want to tackle the anti-viral path.

    All the best,
    Elizabeth
  2. Tiggereh

    Tiggereh New Member

  3. cristine04

    cristine04 New Member

    This is great news! I hope you have sustained recovery and can get back to whatever endeavors you were enjoying before this illness began.

    Thank you for sharing this story with us.

    Cristine
  4. sturg1

    sturg1 New Member

    Elizabeth,
    That is wonderful to hear! You went through so much, but it looks like you are seeing the light at the end of the tunnel. I cannot thank you enough for sharing your story with us!

    I wish you the best!
    Tracy
  5. foxglove9922

    foxglove9922 New Member

    Thanks absolutely wonderful news Elizabeth and thank you for sharing your dosing and story.

    I have been ill with CFS for almost 6 years and pulsing the Valtrex, Famvir, Amandidine, etc. didn't bring me as far as I wished I were. Still disabled and unable to work but have reached a higher level of functioning than in the beginning of this illness.

    Best wishes for continued good health.

    Foxglove

  6. Forebearance

    Forebearance Member

    Thank you for the report, Elizabeth!

    I wish you continuing improvement and good health!

    Forebearance
  7. Tiggereh

    Tiggereh New Member

    Hi All,

    Thanks for the good wishes. In terms of where I am percentage wise, that's a tough question. I seem to fluxuate a lot by the day. I would say that I am a million times better than when I was at my worst (a very scientific measure!!!) and maybe 60% of where I was at my best. Still, my best involved working 100 hours a week, a very active social and family life, going to school, and working on my writing. Probably, that was a good part of what landed me here. I am currently on sabbatical from my job, entering month 2 of a 3 to 4 month break. Taking this time has helped substantially as well, but most of the improvements from the anti-virals actually happened BEFORE I started my long vacation. I am hopeful, though, that with more work, rest, and dedication I can get back to a more relaxed and less stressful version of my previous life.

    All the best,
    Elizabeth
  8. deliarose

    deliarose New Member

    could you tell us how long you were ill before u turned to the FFC?
    Thanks
    Delia
  9. pw7575

    pw7575 New Member

    Elizbeth I am so glad to hear that you are improving. I really believe that my CFS is due to viruses etc. My illness started with a horrible virus. Your story gives me hope for improvement.

    Good Luck and Thanks Again!
    Pam
  10. ulala

    ulala New Member

    What is the FFC Ultraceutical anti-viral supplement? Thanks!
  11. Slayadragon

    Slayadragon New Member

    Elizabeth--

    I'm so glad to hear about this!

    Note how Elizabeth's experience sounds almost exactly like my doctor's approach.

    Also, note how dissimilar it is to the approach that the FFC used on Jolie.

    _How_ these antivirals are used is seeming to me the key.

    If used correctly, they can do wonders. But if you get the strategy wrong, they can be totally useless or even harmful.

  12. Tiggereh

    Tiggereh New Member

    Hi there!

    Delia - I had been sick for a long time, a couple of years, but sharply declined over five or so months before I got in the care of the FFC.

    Regarding the question of the anti-viral supplement, it's one of the Fibro and Fatigue Center's brand of supplements. You can find it on their website and it lists all the ingredients.

    Lisa - I was very intrigued to see your doctor's protocol. I follow your progress with great interest and will be thinking positive, virus free thoughts for you.

    Best,
    Elizabeth
  13. Tiggereh

    Tiggereh New Member

    Hi Jolie,

    Thanks for the message. I have followed your antiviral journey with great interest, and I am so sorry that it was so intense. I see Dr. Bial at the FFC Boston, and she's just fantastic. But people's experience with FFC seem so different, and it seems more tied to the specific doctor than some overarching FFC protocol. Let me see if I can answer your questions, and please don't hesitate to let me know if you have follow up questions or if I don't hit on exactly what you're looking for.

    1. The 500mg two times a day was based on her observation that the drug is strong, and people tolerate it different. My EBV was really high, but she said she didn't want to knock me out and this is generally where she starts people. I never made it up to 3000 and when I hit my limit on the herxing, she was totally supportive of scaling back.

    2. The Transfer Factor is called Tranfer Factor 1000 and is supposedly geared toward EBV and one other virus that escapes me at the moment. I took one pill every night before bed (I found that if I took it in the AM I was a disaster all day, but that if I take it at night I would sleep through the ick and wake up okay). The TF was an over the counter/supplment type thing.

    3. In addition to candida, I've been dealing with a thyroid that has some issues converting T4 to T3, so I've been taking 20mg of time release compounded T3 from a nearby compounding pharmacy. I've had no issues with it, not sure that it's made a huge difference except for speeding up my metabolism a bit and helping me to lose a couple of pounds. I've also been taking pregnanalone, fairly successfully....my numbers tripled from 10 to 30, although I still have a long way to go (normal level is 100, and this effects brain fog and memory). I'm taking 200 mg per day at the moment, and believe this has cut through the brain fog.

    I really hope this helps. If it would be at all useful, I can try to go back through my visit notes and capture what we've done monthly. Let me know.

    I hope you're feeling well!

    Elizabeth