R3 / Day 6

😁

Things seem to be improving some. Yesterday and today had a few periods where I didn’t feel too exhausted to do minor / simple chores. Was able to clean out the fridge a bit and my truck some too. Was nice to have something left over after a workday - even if it’s just a titch right now. 😊

I’m taking the meds as follows:
FolaPro - AM on even numbered days.
B-12 Drops - AM on even numbered days.
Valganciclovir - PM after dinner every night.

One interesting side effect of having clearer thinking seems to be that my concentration has increased - including my “zoning out” thinking periods.

It seems that Round 3 will hopefully be different from its predecessors. Each previous round had a few weeks where things got worse before they got better. Hoping this is the worst it gets this time around as I don’t have any available PTO to take off work.

*Keeping fingers crossed*

——————————-
Scale for today: 2-3/5
Likes: Wolfcub

Comments

Judee
Did your viral titers test high at some point which made it easier for you to ask the prescribing doctor for the Valganciclovir either now or on your other two rounds?
 
ArgyrosfeniX
Judee said:
Did your viral titers test high at some point which made it easier for you to ask the prescribing doctor for the Valganciclovir either now or on your other two rounds?
Click to expand...
Hi Judee,
I’ve never tested positive for a viral load. The first time I used the valganciclovir, I told the MD that I wanted to do what was in Dr. Montoya’s preliminary Valcyte study and showed him a copy. I later learned that they weren’t sure if it was the antiviral effect, or the autoimmune suppression side-effect that worked for PwME. Could be both?

This 3rd Round, all I had to say was “It worked for me before and I’d like to do it again. I recommend safety labs every two months and I’ll take FolaPro and B-12 to support my liver.” Primary’s response was “Sure.” Literally. Had been stressing for days about it and was ready to plead, and got an immediate “Sure.” Took me a moment to pick my jaw off the floor. 😂
 
Judee
Your response helps a lot.

I'm going to a new doctor next month and if she is at all receptive to ME/CFS, at some point I want to discuss Valcyte with her.

I'll look up Dr. Montoya's study so I can take a copy if I do.

Thank you so much.
 
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