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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.
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We finally saw a top neurologist yesterday. He said my ds did not have PANDAS because his dnase titers where not high enough. I KNOW from everything I have read that he can still have PANDAS without elevated titers. My son has every PANDAS symptom except OCD and urinary issues. The doc did confirm he has chorea so I think he fits the PANDAS criteria. It is my understanding that he has to have OCD and or tics/choreiform movements plus some of the other long list of symptoms, but I have not read about any other patients who do not have OCD. Are there any of you out there? My ds does fixate on what ever activity he is interested to the point of obsession. He is using Star Wars as his current coping mechanism to handle his off the charts anxiety that is keeping him home bound out of school, but he does not have OCD rituals like excessive hand washing, etc type things. I guess I am looking for some assurance as I continue to press for this PANDAS diagnosis. My ds did show improvement with 14 days of augmentin. And when he went off the abx the symptoms came back! So he went back on augmentin 5 days later. I am just starting to see improvement now on his 9th day of augmentin. The neurologist said that said that the abx could not alleviate his symptoms because he did not have an active strep infection, and he said even if they did they would only treat the infection. From everything I have read I know this not to be true - that tons of kids have gotten better long after the strep infection was gone. The neurologist did want to test for almost a dozen other autoimmune diseases, and disorders that have chorea and anxiety as a symptom which could be helpful if I have it wrong and he does not have PANDAS. But I am still trusting my instinct and I am still thinking it is PANDAS. I am trying to get our pediatrician to test his dnase and aso again so we can see if anything as changed and also test for mycoplasma, herpes and mono. I would love any feed back from any of you parents who have been in the trenches much longer than me. Thanks!
