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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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vamah
- Author vamah
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Hi. I haven't updated in over a week, but that's because not much to say. Almost at 4 weeks on 1800 valcyte per day. Had a couple days where I was feeling better, then had some physically and emotionally stressful stuff going on and my sleep got fucked up again (I had worked out a complex...
"I don't think you're crazy."
If I wanted to pinpoint when my journey began, it would be with those five words, spoken by a friend sitting across from me as we talked over coffee.
When I say "began," I don't mean, obviously, when I first got sick. That was, depending on what incident in my...
2 weeks on high dose valcyte and I seem to have fallen into a pattern of one lousy day followed by one better day. This seems likely to be due simply to the fact that I have spent my bad days mostly resting, so I feel better the next day. Whereas I spend good days trying to do everything that...
So, I was having a pretty bad day yesterday. I think this was because I spent a lot of time late last week trying to cut through miles of red tape with my doctor, pharmacy and new insurance company regarding my valcyte prescription. At one point, my doctor basically told me that he thought the...
I have not been able to find much research or documentation for taking high-dose valcyte long-term, so I thought I would start a blog to help others who may find themselves in the same situation I am in right now.
Some background: For the past few years I had suffered from increasing CFS...