Discussion in 'Fibromyalgia Main Forum' started by NanceZ, Aug 14, 2005.

  1. NanceZ

    NanceZ New Member

    Hi Mikie

    I'm interested in your empirical use of antivirals and then the TF's.

    I've looked through a gazillion of your posts (you have an awful lot of them!! :) so I wouldn't hav eo bug you by asking but I can find bits and pieces but not an overall plan of how you and the doc did this.

    My doc is very open to learning and my EBV levels just hit the roof again so now is a good time to act.

    I see you used An antiv viral and them swithced to the TF's C and 200. Can you tell me how long you were on each and what dosages you used or tried?

    At the same times as the antivirals did you use a blood thinner of any kind?

    You often mention whey and colostrum.......did you take those around the same time?

    Any antibiotics at the same time?

    Thanks mikie, I know you're awful busy with this board.

    nancez (Nancy :)
  2. Mikie

    Mikie Moderator

    What I did was the Brewer Protocol but because I had already started the Doxycycline, it was a bit different. I took the Doxy for 2 1/2 years. I was pulsing it toward the end trying to see how long I could go without the symptoms' returning. I took 100 mgs. twice a day. I would take it for six weeks and go off of it for two. I kept extending the time off of it until I no longer needed it at all. We now know that one must take it for six straight months before trying to pulse it.

    I was on the Famvir at the same time as the Doxy for a while, but by this time, I was off the Doxy more than I was on it. I took 250 mgs. of the Famvir twice a day. I can't remember how long I kept this up before I switched to the TF's. It was when I switched, I think, that I started using the Heparin and I did that for about 2 1/2 months before I had to quit.

    I took the TF's for three straight months and then went off of them and pulse them for a couple of days every six weeks. I have had to resume the Famvir as I got way overtired when my grandson was born and something was trying to reactivate. I've Herxed when I pulsed the TF's in the middle of July and again when I restarted the Famvir.

    Usually, when the mycoplasmas are down to a small number, the body's own immune system takes over and kills the stragglers. Eventually, the are gone.

    Not so with the Herpes-Family viruses. They lie low and will reactivate at the drop of a hat.

    I have taken the probiotics, undenatured whey, and colostrum all along as they don't interfere with anything else. The only exception is that when I was on the TF's, I didn't think it necessary to take the colostrum as the TF's are made with colostrum.

    Brewer has patients taking the Heparin along with low doses of antibiotics if mycoplasma infections and hypercoagulation are present. He later puts the patients on TF's.

    In a perfect world where insurance would pay for necessary testing, I would have had all the tests done and based my treatment on those. I was lucky in a way that I knew it was a mycoplasma infection which triggered my illnesses. That was all my doc needed to try the Doxy.

    Again, I was lucky in that the Famvir, given to me to prevent cold sores prior to facial surgery, gave me a temporary remission. That was evidence enough for my doc to prescribe it.

    The Heparin was a little more difficult. I went in armed with info from the HEMEX website and from docs using it in treating CFIDS. He agreed because the dose was low and so were any risks.

    Sorry this is soooooooo long, but I felt I needed to explain why my treatment was not a boilerplate protocol. A lot of CFIDS docs are using AV's empirically and having good success. A lot is trial and error with these things.

    Good luck to you.

    Love, Mikie

[ advertisement ]