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Valcyte: Third time lucky

I've written a longish blog post on my varied experience taking Valcyte three different times using different regimens. The upshot is that a half dose has helped me significantly: "Valcyte by itself hasn’t come close to making me fully healthy ... But I’ve gone from maybe 25 percent capacity to 50, from being warehoused to working a little, and that makes an enormous difference to me."

The full post is at: https://tracyduvall.com/2018/10/01/valcyte-and-me


Senior Member

Interesting, blog article, TracyD.

Would you say that that low-dose Valcyte 450 mg daily has moved you from moderate to mild ME/CFS on the scale of very severe, severe, moderate, mild, remission? That's the impression I got from reading your blog regarding your level of improvement.

I think you are right in what you mentioned in your blog article:
I’ve read comments by researchers suggesting that it’s effective against ME/CFS solely because it reduces microglial inflammation. I strongly doubt this: I’ve tried other drugs, such as minocycline, that are reported to have the same anti-inflammatory effect, and they haven’t improved my health at all.

Studies originally suggested Valcyte reduces microglial activation, but a later study showed that Valcyte does not inhibit microglial activation and proliferation.

Which viruses do you have as chronic active infections (high antibody titers), by the way?

You might find these Valcyte recovery stories of interest:

A cytomegalovirus-associated ME/CFS patient (OnlyInDreams) — moved from moderate to remission (2-level improvement on the scale of ME/CFS scale of very severe, severe, moderate, mild, remission) from Valcyte 900 mg daily; but if he stops the Valcyte, he finds the ME/CFS soon returns.

An ME/CFS patient (Mariesak) — went into a partial remission lasting 8 years, after a 9 month course of Valcyte (her health gains remained even after she stopped the Valcyte); her daughter who completed a 12 month course of Valcyte also went into remission, and has remained in remission for 10 years so far.
Thanks for the comments and interesting links! Based on your scale, I guess I went from moderate to mild. On the other hand, I saw from the OMF's meeting last weekend that my pre-Valcyte activity was the same as at least one participant in the Severely Ill Study.

Moreover, I have trouble fitting my experience into such scales. For example, my teaching, which definitely is challenging me, is for only 80 minutes twice a week (total=2:40). That's not equivalent to someone else's part-time work. Further, I know what my pre-sickness fitness was like. So, for me, I've gone from about a 25 to a 50, and there's still nothing mild about my condition -- unfortunately. But it's still much better than before!


Senior Member
Any new treatment in japan?

There is an old treatment, it involves antivirals with possible antiretroviral activity.

Aconitum carmichaelii

Also, Miyarisan a novel probiotic, has taken me from experiencing such severe Orthostatic Intolerance that I was rushing from one sitting or lying position to another before I passed out, to being able to stand calmly most of the time.

This has been a huge improvement in my quality of life. The Miyarisan also reduces my Multiple Chemical Sensitivity responses to negligible levels, which results in another huge improvement in my living standards.

It is imperative that everyone find something that can reduce their suffering, while we wait for more effective treatments. ;)