Fibro Fatigue

I finished a one-year course of ValCyte in October. My provider thought it was enough time, and retested my HHV-6 and EBV antibodies. The test showed I indeed have no current infection of either. So the ValCyte probably worked to rid any such viruses. But--I'm as fibromyalgic as ever. A friend just gave me a new book. The Bible Cure for Chronic Fatigue and Fibromyalgia by Don Colbert, M.D. The doctor seems to agree with my provider on most issues, including naming candidiasis as a major culprit or cause. Indeed, my systemic candida symptoms are worsening. Am using antifungal cream constantly on my swollen, red, itchy, burning feet. The swelling is not just my toes now, but has moved into the pads of my feet. Even in freezing winter temperatures (unseasonably cold for So. Oregon), I am sitting here barefoot as I write. A year ago I would have been donning socks and quilted slippers all day, and kept them on in bed at night. Go figure. After reading the book and sharing its conten...

So I saw my N.P. last Thursday and she has taken a fairly new tack. She used to favor alternative therapies, but after being reviewed by the state authorities, I think she's gotten gun-shy and is following the mainstream protocols. She wanted me to try one of the three "new" drugs now FDA-approved for fibromyalgia. All of them, from what I can tell, are not much different from what I've tried through the years. They are all called anti-depressants "but not prescribed to me for depression" (I've heard this before!). The older drugs were called SSRI (Selective Serotonin Reuptake Inhibitors). The new one I'm on, Sabella, is an SNRI (Serotonin and Norepinephrin Reuptake Inhibitor. This is based on the theory that FMS is caused by a chemical imbalance in the Central Nervous System, or brain. She said it increases dopamine in the brain. I am skeptical that it will help, but I'll give it a month. I have to titrate to the therapeutic level, and if I go...

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 ...