Hi Jaco,
My name is Kyle and I have the same symptoms you had in 2012. I am 19 and have suffered with PANS, POTS, PI, and possible Lyme, after returning ill from a family vacation to Costa Rica. I have done 3 HD IVIG treatments that have only made me worse especially with my derealization feeling. In Feb I tried 10gm of SCIG which I was able to tolerate a bit better but wasn’t enough to make a difference in my recovery. Recently I completed 10 plasmapheresis treatments with some improvement but got worse again after they tried to give me LD IVIG yesterday.
Your post validated how I feel and sounds very similar to what I experience on a daily basis. Are you feeling any better now? What treatments worked for you? If you could provide me with some guidance and hope, I would really appreciate it. Like you mentioned, my life is like H*** right now and it’s hard for people to understand what I am going through. I have literally been physically/mentally disable from my condition for the past year and half.
Thanks for sharing your story with us and being willing to help others,
Kyle