We recently (6 weeks ago) started my daughter (9yo) on niacinamide and are finding surprising major improvements in her PANDAS/PANS symptoms (tics and emotional lability/irritablility). She has had consistent facial, arm and diaphragm tics for over a year now (she does not have OCD). She started having tics when she was 3yo, but until approximately a year ago they were pretty mild/tolerable. She has tested IgM/IgG positive for mycoplasma in the past (no positive strep). We have tried various treatments (clarithromycin, augmentin, azithromycin, Mg, Vit B6, CBD, HDC helminths, sovereign silver) with some improvements but they don't seem to last as she still flares. From reading other people's stories we finally started to consider lyme and co-infections. Looking at various lyme protocols, we found information by Dr Klinghardt where he mentions using high dose niacin/niacinamde. After reading a book called Niacin: The Real Story, which focuses more on treating schizophrenia, we figured it couldn't hurt to try (and it's really cheap). We started her on ~250mg/day and within 2 days noticed reduced facial tics. We have been increasing the dose and are up to ~1000 mg/day (4 doses of 250mg throughout the day) and have only had more improvements (arm, diaphragm tics are reduced by ~80-90%). We are also including ~75-100 mcg (micrograms) of selenium as it is supposed to be good for killing viruses.
After about a week we also noticed her energy level/emotional lability was much better (the first week of taking niacinamide it seemed she was much more tired but this was temporary).
At about the 4th week we noticed a reduction in her deep, constant sighing (not sure if this is air hunger?). This was a big surprise as we didn’t think that symptom was going away since we didn't see this improve in the initial 4 weeks.
We don't know if the improvements will last but wanted to throw this out there in case it helps anyone. Symptoms are not totally gone but drastically improved. We will be seeing a Lyme doc soon also to look further into lyme/co-infections. Wondering if anyone else has tried high dose niacinamide and found or not found improvement?