Hi
@Tammy
You asked me this question:
How do you explain getting better when you were on the anti-virals and other supplements before your surgery?
I got much worse while on antivirals.
I'm not sure why you thought I was getting better, but perhaps you are referring to my old posts from 4 years ago? If so, I should clarify: Every time I thought I was getting better, I would do a bit more activity, and then I would ultimately crash.
In 2014, I started Famvir and Valcyte. The side effects from Valcyte plastered me to my bed. I did notice some improvement, but it turned out to be due to spending even more time in bed from the Valcyte side effects. Every time I increased my activity, I would crash and go backwards.
I now see that the improvement correlated with spending more time flat in bed, which relieved brainstem compression (whereas being upright exacerbated it).
What I suspect is that the EBV that you tested positive for was the culprit behind the CCl/AAl.
Every bit of data, from 2014 until now, refutes this idea.
From 2014 until 2016, I was taking high dose Famvir and Valcyte, together. My EBV titers remained positive and declined only slightly, and I was getting sicker and sicker. My POTS and PEM were just as bad as ever.
When I finally corrected my CCI/AAI, those EBV titers normalized for the first time in the years since I became ill. Also, my POTS and PEM completely went away.