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  1. Hi Chubbermommy We are coming up on 9 wks since we started my daughter on the high dose niacinamide. She is still doing very well--at about the same place we were at 6 wks. She still has a little eye blinking, diaphragm tics, and some throat clearing but nothing close to the constant facial, arm and diaphragm tics she had before. Her mood and energy level remains great. We haven't increased the dose (still at ~1000mg/day given throughout the day). We have wondered if increasing it some would bring more improvements but we are very happy with where she is at right now. Also still giving her ~100 micrograms/day of selenium. Also should mention, we break open the capsules and give her the niacinamide in water or juice rather than swallowing the capsules whole. We had read that breaking them open allows for quicker/better absoption--I tend to think this is important and has contributed to the improvements we have seen. We did go see a doctor recently who is familiar with lyme and other infections. First thing they want to do is have her tonsils removed as they are very swollen (she already had her adenoids removed 6 years ago). In their experience they find some kids won't get better until the tonsils/adenoids are removed. Will be interested to see if we see even more improvements after the surgery which is scheduled for the end of May. If you get a chance read the book Niacin:The Real Story--interesting discussion on its use for a multitude of conditions. Would be very interested in hearing of others experience with niacinamide either positive or not...still can't believe the improvements we have seen with something so simple/cheap.
  2. Thanks 911rn and rowingmom. Niacinamide does not cause flushing like niacin does. Dr Klinghardt's protocol mentions that both are effective against lyme so we tried the niacinamide first as it is more tolerable. Since it seems to be working we haven't tried my daughter on niacin. I'm not sure how she would tolerate the flushing but we haven't had to go there yet. One thing that seems to be important is dosing throughout the day (the books I have ready on the topic mention this). At first we only dosed once in the morning and once in the evening. We did see improvements, but even more so when we started to dose in the middle of the day (mixing it in apple sauce she takes to school). BTW--niacinamide tastes horrible. Mixing it in juice is helpful. Rowingmom, reading your posts steered me to look further into lyme/co-infections. I will definitley mention the sighing to the lyme doc. Thank you.
  3. 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?
  4. Thanks for posting this info. My daughter's main PANS/PANDAS symptoms are motor tics which have been very stubborn to get rid of. Sickness/infection seems to make them flair. We have tried antibiotics but they haven't really helped a whole lot. I am currently working on healing the gut as it seems this is where we are having the most success (althought her tics are not completely gone they have subsided). Can I ask where you order DAO from? Also did you notice any herxing type reaction (ie increase in tics) when your son started taking this? Thanks so much.
  5. Dr Niran Al-Agba at Silverdale Pediatrics Silverdale, WA 360-692-8588 My kids have only been seeing her for about a month but I am very impressed! She is very interested in learning about PANDAS and willing to treat with long term antibiotics. She understood the importance of treating quickly and not waiting for a positive strep test.
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