Hi everyone, I am almost 25 and just got diagnosed with PANDAS a couple months ago. When I was six, I had Sydenham’s chorea and was put on prophylactic penicillin, which I continued taking until age 22. For the past few years I have been having increasingly bad symptoms and finally just found out that I have also had PANDAS the entire time. I also scored very high on the Cunningham Panel. Unfortunately, IV steroids made me worse, and the treatment recommended to me is rituximab, which I do not want to do. I feel like I need to figure out the root cause of why I am having an autoimmune problem.
My symptoms are the following:
-OCD
-Mood crashes every few weeks related to OCD
-Tics
-Sleep disturbances
-Social anxiety
-Eye problems: My eyes and eyelids start to feel like they are shaking if I try to look at someone for a few seconds straight while trying to concentrate on what they are saying (has anyone else had this??); Occasional throbbing pain above and behind my eyes or pain when moving my eyes; Dilating pupils
-Digestive problems
-Acid reflux
-Achy muscles sometimes
-TMJ
-Plaque on teeth
-Some numbness in arms and legs when lying down at times
Things I have tried:
-Bactrim (no effect in first week)
-Candex (same)
-Air purifier for mold
-Probiotics
-Infrared sauna
I am doing 23andMe and am thinking of doing tests for heavy metals, mold, other autoimmune diseases, gut testing, and maybe others.
If anyone has any ideas or thoughts, I would be very appreciative. I am pretty desperate to get better 😑
Any recommendations for doctors in the Northern Virginia area would also be helpful.