momcap

Yes, I TOTALLY agree! I've had several very lively discussions with my doc about my "carrier" son. Just because he doesn't have puss on his tonsils and a fever, and his strep doesn't clear with a regular course of antibiotics, doesn't mean we should just call him a carrier and give up!! Every single swab he's EVER had is positive, so we don't need to guess where the strep is. Clearly it's in the back of his throat, and likely elsewhere too. He had "migraines" and "allergies" which I believe was strep in his sinuses. They both cleared within 2 months of starting lyme treatment. My PANDAS son had major and continuous improvement when my "carrier" son was on abx along with him. Unfortunately, we were unable to continue abx with carrier DS, due to severe stomach pains. Ever since we took "carrier" DS off abx, PANDAS DS has been struggling. And at about 6 weeks off abx, carrier DS got that peculiar stink back on his breath. Ugh. At least the headaches haven't come back (yet). So frustrating! And my family doc doesn't believe a word I'm saying because it doesn't make sense medically. Okay, done ranting... for now...

Same here. We are all positive for lyme, all positive for strep off and on, including 1 strep tcarrier, but only 1 with PANS/PANDAS.

Is there any way to connect with other homeschoolers in your area? I had to homeschool DS for most of grade 2. The best resource I had was other homeschooling parents. They invited me to their meetings, helped me with legal paperwork that the school would require, informed me of my rights, and directed me to lawyers that specialized in this type of thing. They helped me find great curriculum, and in general just supported me along the entire journey. They had already been there and done that, so any questions I had they were prepared for. I informed the school district that I was homeschooling with the goal of getting DS back to class when he was able. The district actually worked with me and didn't require all the legal stuff I was dreading.

Just a suggestion, and I know it's an expensive one, but have you thought about testing other family members for lyme? If one person has a questionable western blot, but other family members are obviously positive, then it is easier to make decisions. My PANDAS DS had many positive bands (IgM & IgG positive via Igenex) and our decision was pretty easy to treat for lyme, but that was backed up when I tested myself. I don't have current lyme symptoms, but when I read about lyme I realized I had many of the symptoms in the past. So I got tested and it came back CDC positive. No room for doubt for me. We realized all family members had possible symptoms, and when we tested DH and our other 2 boys, they ALL came back IgG positive. We don't live in a lyme endemic area either, and don't recall ANY of us ever having a tick bite. ??? Treating lyme isn't an easy road, not that treating PANDAS is either. But you need to be confident (or desperate) in order to move forward, and perhaps testing other family members will give you that confidence, or help rule lyme out.

My 7 year old non-PANDAS son had nearly constant migraines. He was always holding his eye or forehead. Family doc diagnosed migraines and allergies, gave us tylenol and nose spray, and that did nothing. I pushed the issue and went on to discover he was a strep carrier, possibly had sinus issues(?), and he tested IgG positive for lyme. After several months of combo abx the headaches went away. He stayed on abx for 10 months, has now been off for 4 months and the headaches never came back.

I agree with the previous posters. I think lyme can cause PANS, but I highly doubt it could be the ONLY cause. I look at it as 1 factor in the snowball that hit my son's immune system. I like the analogy (LLM's, I think?) of peeling back the layers of an onion - PANS, lyme, mycoplasma, other co-infections, pyroluria, methylation issues, mold, ??? I believe that there have to be many factors that snowballed together to create this nightmare. I don't think it's exactly the same for everyone, but there would be similarities, hence the high number of us PANDAS folks who have discovered lyme. That must be 1 common factor, but certainly not the only factor, and not a required factor. There are lots of other infections that can cause similar problems. Just my 2 cents...