Major improvements on high dose niacinamide

[dharper]

 

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 4^th 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?

[911RN]

Interesting, high dose niacin can cause side effects of flushing, hot feelings. Has she suffered from this or complained about this? Taking 1 regular aspirin 1/2 hour before can lessen side effect- what we do for adults. But, since it is a child and aspirin is not recommended for them, I was just wondering how she was tolerating it.

[rowingmom]

I was wondering about the flushing as well. I have tried niacin myself (250 mg) and found it almost unbearable.

 

Be sure to mention the sighing to your LLMD. This symptom was one of the babesia herx symptoms that DD developed when first started on Buhner's babesia protocol. Malarone didn't produce the same reaction.

 

Glad your niacinamide trial is going well. Experimentation can reveal valuable information.

[dharper]

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.

[rowingmom]

Dr Klinghardt's protocol mentions that both are effective against lyme

 

Nice to know. Thanks.

[911RN]

Good to know about the flushing not being caused by this product. The horrible taste would be something to overcome, I suppose.

[chubbermommy]

Thanks for posting about this. I have been thinking about trying it, as DS' tics are not getting any better. How are things going now?

[dharper]

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.

[chubbermommy]

I'm glad to hear it's working so well for your daughter. I have 500mg capsules which I'll have to break open anyway. My son tends to be very sensitive so I will start at a low dose and make sure he doesn't have any adverse effects. I have read some of Dr. Hoffer's writings online, and it seems niacin/niacinamide is good for many of my son's symptoms - slight anxiety, a bit of OCD, hypersensitivity, and of course, really bad tics.

 

So I'm going to try it tomorrow and fingers crossed something good happens.