TSH_73

I have PANDAS and rheumatic fever, and when I first got rheumatic fever one of the early symptoms was joint and knee pain and I think general leg pain (I don't quite remember because it was a long time ago). And rheumatic fever is very similar to PANDAS, basically the same thing / on the same spectrum of autoimmune encephalitis from strep.

Hi - that's interesting about the IVIG. I don't have any experience with that treatment so I am not sure. But as for the antibiotics, I would say that you may see some improvement on antibiotics within a month, but it may also take longer than that to notice much. I am 25 and have had PANDAS for 19 years and only figured it out last year (was diagnosed with rheumatic fever a long time ago but not PANDAS), and I was prescribed Bactrim last year for one month. I did notice some improvement, but it was very gradual and at the time I couldn't even fully tell if it was doing anything. And I also couldn't tell if it was from the antibiotics or something else. But I know the antibiotics were working because the second time I got on antibiotics for longer than a month the symptoms definitely started to fade. As a side note I have tick borne infections as well so that definitely complicates things.

Hi 4Nikki, thanks for the reply - I will look into all that.

MomWithOCDSon -- thank you so much for your reply! I actually did go to Dr. Latimer, who diagnosed me with PANDAS. My concern with the rituximab is mostly that I just have a feeling that it won't work for some reason. But I am keeping it in mind as an option. I will definitely try to find an integrative physician and look into methylation. That is really interesting about the histamine - I didn't realize that could all be related.

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.