Months is not long at all! Though not doubt seems that way. Has it even been a year yet? please hang in there- i'm not ready to give up on things staying very severe for you. need 12-18 months. .
What was the serious vaccine reaction and how long did it take to manifest? Were those the symptoms that made one wonder about neuro auto antibodies or was that seperate? (I have plenty of neural symptomns and its always a concern for me). And on vax, I better not get started).
Sorry, I've been playing this game with my body since 2019, for ME a pretty fast decline. The reason is that my body goes into flu and extreme dysautonomia mode after eating. It's hard to change because I can't pace, and I have to eat.
Yes I would say months isn't long but since May is a long time and my neuro symptoms have been getting worse every month. I am pretty convinced that they will not get better when I've reached the 12 months mark. Technically I would need a blood patch, but I am too severe to have one.
I'm hanging but realistically. People told me the same after the vac and I knew effects were just too strong that I would be able to bounce back. We know our ME bodies. My body is one of those that has never stabilised.
My covid v was one shot of Pf and made my ME from mild to severe, and that spinal tap to very severe.
I've been collecting new neuro symptoms every month despite being 100% in bed.
I'm further declining. In other words: less is needed for more extreme PEM. It's a limbo because I'm sure you know leak can have lots of chronic long term effects, but I can't have a patch. I can't stand people in the room and didn't even manage to do spinal MRT.
It's an unbelievable horror story like the one of many with very severe ME, and we and my loved ones would all love to have it differently, but unfortunately this is the harsh reality.