Just to say you that I stopped photopheresis treatment after 4 sessions.
I started feeling really weak after the third session and wanted to have a fourth to see.
After the fourth session, I wasn't able to stand up and needed a whelchair to come back at home. I ended up in severe crash during 5 days (in dark room not able to talk and very difficult to eat and drink).
My internist doctor advised me to stop the treatment. It was a very difficult time because I worked so hard to access it.
I am now at home in my severe baseline condition.
There is no side effect about the treatment itself, but i was drained after each session.
The stamina was affected and sleep too.
I haven't noticied any effect on my symptoms (cognitive dysfunction, constant head pressure, sore throat, PEM).
After testing several immunomodulatory drugs/treatments (high dose prednisone, imuran, photopheresis), it seems that my condition is driven by an other mechanism.
I have head pressure but i don't think it's related to intracranial hypertension. It's worsen when I do cognitive tasks like read or write, or to focus on a precise thing with my eyes.
It's seem to be related to PEM. Diamox is know to lower bicarbonate in blood and can cause acidosis. Given the high lactate found in ME/CFS and the fact I have an high anion gap, i don't want to worsen this metabolic problem.
Tomorow, I will see my internist to have blood lactate level before and after walking a little to see.