So I've been on Valcyte for 13 months and 2 weeks. How do I feel? Light years ahead of where I was before I started treatment. Dozens of symptoms have vanished, but a few still linger. Namely, mild fatigue & low energy. Both of which fluctuate between mild and non-existent.
2 things I wanted to point out that I attribute to my recovery:
1) I'm taking LDN 3mg nightly now. I've been on it pretty consistently for about 1 1/2 months. That seems to be the optimal dose for me. I've noticed that my immune system doesn't switch into high gear the next day when I take LDN at that dose, which translates into little or no fatigue. However, that effect doesn't last the entire day. I wanna quote an article I read about LDN:
"LDN appears to effect the functioning of the regulatory immune cells in the central nervous system called microglial cells. Upon activation by infection or cell damage micoglial cells produce pro-inflammatory cytokines, reactive oxygen species (free radicals) and nitric oxide. Microglial cells may be a key component of the ‘sickness response’ that produces fatigue, fluey feelings, pain, etc. when we come down with an infection. Some researchers believe that microglial cells may be chronically turned on in ME/CFS and fibromyalgia. LDN appears to block a receptor on the microglial cells thus inhibiting their activation."
Most people I'm sure have read this already, but in case you haven't here is the link to the LDN article:
http://phoenixrising.me/treating-cf...-and-immunemodulators/ldn-low-dose-naltrexone
2) I'm taking Bayer Aspirin to reduce the effects of hypercoagulation. I've observed that when the nurse draws my blood, she often times will have difficulty drawing it. And it's not because she couldn't find a proper vein. It's because of hypercoagulation! Here is an interesting article on the topic:
2 main points from the article:
- "Viruses and bacteria may be hidden under the fibrin layer coating the vessel walls (directly caused by hypercoagulation), essentially hiding them from antibiotic and antiviral treatments."
"Some of the symptoms associated with hypercoagulation will surprise few with CFS and/or FM: brainfog, cognitive dysfunction, digestion problems, fatigue, and generalize malaise."
At this point, I'm not sure how much more I can improve with the Valcyte. I mean it has been 13 months and I almost feel like I've plateaued from a Valcyte perspective. But from an LDN perspective, I think I have more room for improvement! This is just what I've gleaned from listening to my body and my attempts at understanding how it's responding to each med. But I get the feeling that when I take LDN 3mg at night, it honestly does seem to shutdown the 'sickness response' that produces fatigue! I'm hoping that overtime, this effect will last even longer than it currently does.