Fibro Fatigue

Still not much change in my symptoms, but I have had another antibody test and it appears that the titers are dropping on both HHV-6 and EBV. In fact the HHV-6 is now considered a past infection! It is perhaps a sign that the Valcyte may be working. My provider has offered to keep me on the Valcyte for another six months. In the meantime, she also found I have spikes in cortisol during the night and morning, and is treating that with herbal/natural supplements. I think it has helped my sleep and lessened my nighttime hot flashes, along with the progesterone cream. The waiting game continues. My muscles around the shoulder blades are weak again, making it very easy to pull and overuse them and leave me non-functional, on my back, for a day at a time. Very frustrating. I use medical tape for brief periods across the upper back to provide support (a trick I learned from a physical therapist), but can only stand it for a few hours before the tape irritates my skin too much. Yesterday I pul...

I went to see my provider on Friday, armed with more research I found on HHV-6 and EBV. I discovered information on ValCyte (ganciclovir) which has shown positive results on CFS patients with both viruses in two studies by Jose Montoya of Stanford University. To my surprise, Mary Lou had heard of ValCyte and had prescribed it once before but it was so expensive the patient opted not to take it. I am soooo grateful that God has provided John with a teaching job that gives us good insurance. It will cost around $13,000 for the six-month course of this drug, but I will only pay $2800. God is so good! The book "From Fatigued to Fantastic"  describes the protocol, and Mary Lou is following the book exactly. There is bloodwork to be done regularly to check for side effects. Now we wait, pray, and see. It can take four months before patients feel any better. The drug works to stop the viruses from replicating their DNA, thereby stopping reproduction, and they eventually die ...