How important is niacin?

[Irena]

Trying to figure out what may be the cause of worsening of symptoms in my son (it's becoming my obsession for the last few days; it is another story - why is it so hard for me accept it?), it came to my mind that giving up Bonnie's vits and replacing it with a multi + many other things (folinic acid, lithium, some amino acids, Omega 3, ALA, probiotics, add. magnesium and calcium, 5-HTP, NAC - probably I missed sth.), he gets much less niacin: 50 mg (75 mg since yestarday - we replaced NOW Special Two with Solgar's VM 75 formula as a multi) against 500 he was getting with Bonnie's vits.

 

He didn't tested low in niacin in his Organix test but on the other hand why should he then if he was taking 500 mg daily and we didn't stop supps before making a test as it is recommended (nobody told me about it).

 

On the other hand, I looked at Chemar's post "The treatment that helped my son" and I can't see any additional niacin, just multi with high B vitamins content, but I suppose it is not more that 50 or 75 mg a day.

 

What do you think? How can I determine if he needs more? Through trial and error method only?

 

How important is niacin in tics? Kim, any article on that which you could recommend and which I could show to our doctor (Sheila's book is to arrive very soon)?

 

By the way, there will be no MB12 from USA as our custom authorities make such a fuss about it demanding tons of documents. It all takes time and you have no guarantee that the vitamin will be good any more when you get it (if you get it). So I'm trying Italy - more expensive, but no duties and lower shipment costs (and only 24 hour delivery)

[Chemar]

Irena

 

why is your son getting LITHIUM???????

 

Unless he has bipolar disorder (and even then I would caution against lithium) it is a IMHO very likely a problem! Lithium is generally toxic to the system

 

you also say "some" amino acids...as you know, supplementing with amino acids that are not deficient can also be a problem, and giving TS patients certain aminos can increase tics

 

My son cannot tolerated additional niacin beyond what is in his multi. He reacts very badly to it

 

Also, do remember that sublingual Vit B12 is very good and unless there is a very specific need for MB12 shots, the supplement should be ok

[Irena]

I am so confused!

 

Staś tested very low in lithium, both in hair and blood test: 0.1 agaist normal range 1-1,2.

I can see that our doctor applies many things that work with autistic children. She just starting dealing with tics.

 

During the last Washington DAN conference there was a lecture (by dr Adams) about how important is supplementing lithium. I even have his presentation it in Power Point because someone from the Polish autistic board asked me to translate it. But I haven't looked at it, yet. I know that many autistic kids in Poland take it. I know it can be toxic if you have too much of it. PLEASE, tell me where I can find any information about lithium being harmful for those who tic (or did you mean generally).

 

I know what Staś takes is quite a mixture.

 

You asked about amino acids: he takes NOW Tri-Amino, i.e. L-Arginine/Ornithine/Lysine, N-acetylcysteine and 5-HTP (it is also an amino acid, isn't it?). Our doctor prescribed also L-tyrosine and did not give him taurine, but I decided (after some reading and consulting you - THANK YOU, CHEMAR) to stop tyrosine and introduced taurine back.

 

As for MB12 I read a lot about it. Both oral and sublingual are not that effective as injections or nasal spray. That's what Stan Kurz says (he invented MB12 nasay spray).He says that nasal spray may even work better for some people because it gets closer to a brain. Staś was very defficient in B12, the lowest the doctor has ever seen.

 

You see, you've always said that it is wise to introduce supplements one by one to see reaction. We've made so many changes (according to doctor's recommendations) that I am really confused now.

 

For the time being we've finished B12 injections and it looks that it is still a long way before we get MB12 injections. If he is really so low in B12 I could give it a chance although I think I want to discuss the nasal spray with our doctor.

 

As for lithium, I think I will check it again soon to see whether it grows.

 

As for amino acids, if you think something he takes may not serve him well, please, write.

 

We are still to order P5P and glutathione lotion.

[Irena]

Chemar,

 

I've just read dr James B. Adams' ( Arisona State University)presentation. That's what he says about daily lithium dosage (earlier he says about importance of lithium in prenatal brain development; defficiency of lithium in those with behavioral problems, etc.):

 

"An estimated RDA is 1000 mcg/day, and people in the US consume only about 500 mcg/day.

Extremaly high doses of lithium (1,000,000 mcg/day) are used as a psychiatric medication, primarily for "calming/mood stabilization", especially for bipolar disorder; nearly toxic at this dose.

Recommendation: a dosage of 200-1000 mcg a day should be safe, and may be beneficial to younger children with autism and their mothers"

 

Staś takes 600 mcg a day, but I will definitely keep an eye on it and check the blood level.

[Chemar]

Irena

I am referring to lithium in a general sense. I would not, under any circumstances, give it to anyone. I personally know two people (my aunt and a dear friend's son) who have suffered irreversible damage from lithium (both were given it for bipolar disorder)

Even low doses can be highly toxic in many people. So if it is causing Stas to have more tics, it could be as a result of the toxic reaction. I am not saying this is the case, just suggesting it as a possible cause. This is just my personal opinion.

 

 

 

re 5HTP: it is NOT an amino acid, but is rather a precursor to the neurotransmitter Serotonin

 

you may also want to remove the arginine and see if things improve without it...some people react to arginine

[kim]

Irena,

 

http://www.bonniegr.com/Interview%20with%20Bonnie.htm

 

Go down to 3 A to read what Bonnies says about the role of niacin.

 

Here is a bunch of articles about niacin and tryptophan.

 

http://www.google.com/search?q=niacin%2Btr...8&start=10&sa=N

 

I too have read of warnings against giving amino acid supplements without having a deficiency proven with testing. Maybe you had testing for them?

 

Thoughts are with you!

 

Kim.

[Irena]

Thank you Chemar and Kim,

 

I am really grateful for your advise and all the information. There is never too much caution and I want to be sure that whatever Staś takes it is only to his advantage.

 

Yes, all the supplements are to serve some specific needs revealed by tests. Unfortunately, I don't know what is the purpose of each one of them (eg. Arginine/Ornithine/Lysine). I will certainly ask.

 

The Organix showed: big yeast overgrowth, deficiency in B6, folinic acid and much, much bigger in B12 and not quite sufficient liver detoxification process (phases both I and II - whatever it means).

[Claire]

Chemar and Irena,

 

Chemar, Do you know what dosages the people were that had irreversible problems with lithium toxicity, and what the irreversible problems were? I assume that they were megadosing and using it for some bipolar therapy? I really would like more information, since I also supplement lithium.

 

Irena,

 

My son's lithium in his hair showed low also (multiple tests showed this), so we have been supplementing at about 5 mg (5000 mcg) a week. I see now that that is high. After supplementing, my son's recent hair test now shows lithium in the normal range. Glad it wasn't high, I would have freaked out with Chemar's comments!

 

From a biochat posted (no link, sorry)

"Hair metal test is the best way to monitor lithium. Lithium is not in water, since bottled water has all the contaminants removed (missing the beneficial nutrients now). Studies have shown there are high crime rates in areas with low lithium. .Lithium used to be in our water, but with all the purifying they do, lithium is not easily found in water these days."

 

FYI, my son only drinks highly filtered water.

 

I get cautious about all this...the right balance is so key. Like iron supplementation was a no-no with these kids, but my son had low iron and needed it. Same with copper...a no-no for ASD kids, but my son was low so we supplement 1 g/day.

 

It is quite confusing...IMO, it comes back to:

 

1. Having a good doctor,

2. Doing your own follow-on research

3. Testing and RETESTING the levels frequently (to me 6 months is ideal for vitamin levels, though not always doable).

4. Giving the minimum supplements that are effective.

 

Irena,

 

If your son is having issues, then I suggest going to no vitamins for a few days then adding them in either 1 by 1 or 2 by 2 for a couple of days at a time until/unless you see a problem.

 

As for niacin, Pfeiffer says little it needed for undermethylated kids. My son is (was?) so he only get 25 mg/day.

 

 

Claire

[Chemar]

Claire, I dont know the exact doses that were used, but I can ask my friend tomorrow evening at church.

 

My aunt is in a different country. She has lost a lot of her mental capacity from lithium use...she was a brilliant mind, albeit bipolar, but after starting lithium her mind, memory and personality dulled and she still has severe tremors and slurring of speech, which have never gone away, even tho she is on a different med for years now

 

My friend's son was put on lithium some years ago, but the side effects were so bad that they weaned him off. However, again he has tremors that have not gone away, and also had kidney and thyroid problems since being on the lithium. Again, he seems to have also lost mental capacity after the lithium treatment, specifically related to memory. He was put on it when he was in his early teens and was on it for less than a year. He is now 20yo Interestingly, it is believed that he developed the bipolar symptoms from ADHD treatment with adderall when he was in elementary school.

 

 

My friend once pointed me to this article about the dangers of even low dose lithium in children

http://researchnews.osu.edu/archive/lithium.htm

 

 

As I clearly stated in my previous post, I was referring to two people who had bipolar disorder. I also explained that it was simply MY PERSONAL OPINION that lithium is potentially harmful, and that my opinion was based on observing what it did to my adult aunt and to my friend's son.

 

Of course, everyone should do as they believe is best for themselves and their own children.

[Claire]

Chemar, Irena

 

Irena, here is an old link I used when my son tested deficient in certain amino acids.

http://www.moondragon.org/health/nutritionbasics/aminoacids/

He only had certain deficiencies, but I was told by Pfeiffer that the best solution was a balanced compound. I bought one, but when I looked at the small amounts I realized that I just needed to find ways to get more protein into him. I also use AFP peptizade to help with protein digestion.

 

Also, I found this on niacin in my notes (no link...I don't always save links in excerpt that I save for myself)

Q: How does high dose niacin (vitamin B3) fit in with methylation?

A: Actually excess niacin is metabolized by methylation and thus uses up methyl groups. One source suggests to aim for under 75mg (usually ~50mg) of niacin+niacinamide per day from supplements. If you are taking large quantities of B3, please get your homocysteine and SAM checked to make sure this niacin isn't excessively taxing the methyl metabolism. Likewise some supplements have lots of B6 (e.g. 100mg) and between 20 and 50mg per day of B6, or less, might be better.

 

----------------------

Chemar,

 

Thanks for the link, I really appreciate it. And please do ask your friend the next time you see them...maybe PM me since I don't always read the board.

 

I really appreciate your pointing this out. Yes of course I know that you respect that we all must do what we think is best, but we all need to hear these warnings, so I am glad that you posted that!

 

I would think that lithium toxicity would be the same, whether or not it was for bipolar. But your link did make me feel better, because they are discussing 'therapeutic doses' of 25+ mg/kg of body weight. For my son (110 pounds) that would be 1250 mg/day. My son has been getting about 1 mg/day. It wasn't to help manage behavior, just to correct a deficiency, presumable from drinking only filtered water.

 

However, your comments still scared me so I will lay off for a month, then cut his dosage in half to the 500 mcg/day that Irena posted is 'recommended' daily allowance. I don't take any for myself and I drink the same water. But I wasn't deficient either. This reminds me of iron and copper, where so many of these kids shouldn't supplement it, but my son was low in both iron and copper and needed supplementation. This is all very very complicated, and so critical to monitor, especially for long term doses.

 

We have cut back a lot on vitamin doses...Half of what we were doing earlier. He takes only 6 vitamin capsules a day now, plus Omega 3's and probiotics. I hope his Spectracell vitamin/antioxidant tests show him okay at these levels. We haven't done ALA or Cysteine in 18 months I think.

 

Thanks again for your input, as always it is appreciated!

 

Claire

[Irena]

THANK YOU!

 

The more information we have the better. You are so right about being cautious and not giving our kids nothing more than it is really needed. Thank you for all the links.

 

Staś takes 600mcg of lithium per day but I will make sure to check the level again very soon.

 

As for niacin, Pfeiffer says little it needed for undermethylated kids. My son is (was?) so he only get 25 mg/day

 

Where can I read something about methylation? I have no idea what it is but it is exactly something that is not quite right in Staś. Organix showed both methylation cofactors high (one, related to B12 even very high). Intervention options: B12 and folic acid. (Other abnormalities: high xanthurenate, i.e. impaired tryptophan metabolism; rec. P5P; high glucarate, i.e. hepatic phase I and II detox abnormality, rec. N-acetylcysteine, glutathione and hepatic support; very high D-Arabinitol,i.e. candida, of course - I hate this nasty thing)

 

But honestly, I have no idea on what basis our doctor recommended amino acids and 5-HTP. I will read carefully Claire's link on them and will make sure to ask our doc. So far, I already have cut Tri-Amino (Arginine/Ornithine/Lysine) by half.

[kim]

Irena,

 

This site also contains easy to read info on amino acids. I don't know about some of the statements at the top of the page, like "meat" being so great for you, but.....hopefully the amino acid info. is accurate. As always check other sources too.

 

http://www.biblelife.org/amino.htm

 

Here is where you can read about Methylation.

 

http://www.alternativementalhealth.com/articles/walshMP.htm

 

Be sure to look at the bottom of the page for all of the clickable pages in this article

 

Pages A-E

 

Pages F-L

 

Pages Q-Z

 

Index Page

 

This is a discussion with Willam Walsh, Ph.D., Senior Scientist, Pfeiffer Treatment Center

Commentary on Nutritional Treatment

of Mental Disorders

 

It's the center that has been guiding the protocal for Caire and her son (along with Claires own research and input).

 

Kim

[Claire]

Thanks Kim, you are very organized!

 

Irena, Kim is right that Pfeiffer was my information source when I researched methylation.

 

I just googled this site for the thread I started some time ago on it. It was confusing at best. Others added to it, which was helpful.

 

http://www.latitudes.org/forums/index.php?showtopic=837

 

Somehow I remember them wanting to limit B3 if undermethylated. Anyway, the data is 2 years old and they may have changed their view.

 

Claire

[Irena]

Kim, Claire - Thank you!

 

I've already read Claire's link on amino acids and and still don't know what is the purpose of Staś' taking Lysine/Ornitine/Arginine, so I cut further to 1 capsule a day and will most probably give it up.

 

Staś' tics are much less. I can't notice this hand shaking any more. Was it this burning or B12 (if so, was it stress, pain or B12 itself).

 

I've got some mixed feelings now about MB12 injections. What is our purpose? Bring the body balance back (if it has ever been there) or reduce tics? Of, course both. The first is to result in the latter. But I don't want the first for the price of tics increase. I know that sometimes it is to be like that, eg. candida treatment, but it does not last too long. Dr Neubrander says the worsening of symptomps may be from 2 to 6 months. Too long. He recommends a very detailed survey for parents to see whether their child is making a progress. There are so many criteria there. He even says that simple increase of B12 in the body is not the purpose!

 

With Staś there are only two purposes: improve his methylation and control tics - nothing else! So my question is: does it have to be injections. Yes, I know they are much more effective that other forms. It is better than nasal spray in a sense that you can't be sure of a dose with nasal spray. But do we have to be?

 

I have to talk about it with our doctor. Hopefully, Both Carolyn and Sydsmom did not see any considerable tic worsening at the beginning of the treatment.

[kim]

Irena,

 

Back to your original question about niacin for a minute.

 

These 3 statements are from Bonnie's site.

 

http://www.bonniegr.com/Interview%20with%20Bonnie.htm

 

1. Anxiety and motor tics can be associated with increased kynurenine.

 

2. My background in biochemistry came in handy, however, in piecing together clues I came across, such as increased serum kynurenine found in all TS subjects in studies funded by the TSA and reported by Handley,

 

3. I use a high dose of no flush niacin to inhibit the tryptophan to niacin pathway and reduce breakdown of tryptophan to its intermediary product, kynurenine.

* * * * * * * *

 

If increased kynurenine was found in ALL TS subjects, would supplementing with 5HTP with reduced niacin, (less than the ratio in the Bontech vits.) not potentially be a problem? I don't know how big this study was, but might be something worth thinking about.

 

It's too bad, noone told you to stop supplements, prior to testing. However, I remember one of the great Dr.s in this field saying to remember that tests are indicators, and observing symptoms and improvements can be just as important.

 

Just an example, I recently read an article where they tested levels of intercellular magnesium (serum too, I think) They found, even when testing didn't indicate a deficiency, when they gave magnesium supplements, it didn't get excreted, suggesting "it was being used" regardless of test results. I'm going to look around for that study.

 

Don't be afraid to trust your instincts (of course, along with Dr.s advice and testing, )

 

Kim