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So DS16 is really anxious again, can it be too much folate? We just added a supplement for his suspected Mito dysfunction. We are using Neurochondria and it seems to have a lot of stuff inside.

 

Here are the ingredients for Neurochondria:

Three Capsules Contains:
Vitamin B12 (as Methylcobalamin) 1.5 mg.
Folate (as L-5-Methyltetrahydrofolate from L-5-Methyltetrahydrofolic Acid, Glucosamine Salt ) 300 mcg.
Acetyl-L-Carnitine (as Acetyl-L-Carnitine Chloride) 300 mg.
Benfotiamine* 250 mg
Coenzyme Q10 150 mg.
Glutathione (Reduced) 150 mg.
Phosphatidylserine 150 mg.
R-Lipoic Acid (as Sodium R-Lipoic Acid)** 120 mg.
*Benfotiamine is a source of Thiamin.
Other Ingredients: Hypromellose (derived from cellulose) capsule, Microcrystalline Cellulose, MagnesiumCitrateLaurate, Leucine, Silicon Dioxide.

 

Here are his 23andMe results:

MAO-A R297Rrs6323TT+/+

MTRR A66Grs1801394GG+/+
COMT V158Mrs4680AG+/-
COMT H62Hrs4633CT+/-
VDR Bsmrs1544410CT+/-
VDR Taqrs731236AG+/-
MTHFR C677Trs1801133AG+/-
MTRR A664Ars1802059AG+/-
CBS A360Ars1801181AG+/-
What am I doing wrong?
Thanks in advance,
T.Anna
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How long has your son been on the supplement? Sometimes it takes a few days for the body to adjust. My son takes Methyalfolate in pill form by itself. I give him other supplements but they are not all together in one supplement. I was wondering it there was something else in the supplement that might be causing this symptom to increase. I have also done the 23 and me testing results with my son and I have really gone slow about adding supplements.

 

My son cannot take supplements like this because if he gets worse, I can't figure out what is causing the problem. That's the reason I have to stay with single ingredient supplements. However, I do give my son some of these supplements to help the methyfolate to absorb better. BTW my son's vocal tic gets worse if he misses a dosage of his methyalfolate. You may want to try using single ingredient supplements to figure out what's cause the symptom to increase.

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Hi t_Anna,

There are definitely a lot of ingredients there, and I agree with rachel that it is usually best to avoid "multis" as it's hard to pinpoint the cause of adverse reactions.

 

I notice that your DS is CBS+ and if this is expressing you need to avoid sulfur-based supplements. I see that glutathione is in there, which is a big sulfur donor. So, that's a possibility.

 

Also, what is the status of the NAT2 G590A gene (rs1799930)? I spoke with Sterling Hill (creator of Sterling's app) and she told me that because my ds is (+/-) for that gene, if it's expressing, he will not be able to clear folate out well so I have to be very careful of that. In some cases, people do better on the 5-formyltetrahydrofolate (AKA folinic acid, AKA calcium folinate) than on the 5-mthf.

 

If you stick with the 5-mthf, a good one is Amy Yasko's drops: http://www.holisticheal.com/methylmate-b-nutritional-supplement.html

 

You have great control over how much you are giving, as each drop is only 67 mcg. Try a drop every second day and see how it goes.

 

One other thing - the folate needs to be used with a b12 in order to work. According to heartfixer, if you are COMT+ and VDR+, you are going to need and tolerate methyl groups. However, Sterling does not necessarily agree with that, citing that some people who are COMT+ and VDR+ can still be sensitive to methyl groups. It basically comes down to the person, despite the genes, whether or not they feel they can tolerate something or not, so trial-and-error is key. I try to stick with hydroxy-b12 and adenosyl-b12 for my son, just to be on the safe side for now. However, one day I will try the methyl-b12 to see how he feels with it.

Edited by teamtyrion
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Agree with the others about the downside of using combo supplements. In addition to glutathione, R-lipoic acid might be a high sulfur - you should check. I know alpha lipoic acid is high sulfur and needs to be avoided by those with CBS. Also check into the negatives of carnitine. I know it's recommended for CBS but when I looked into it, it seemed to have some potential downsides that made me want to avoid it. I can't recall all of them but one was that it lowers the seizure threshold in some people and we've had issues with tremors, tics and febrile seizures, so that was a big one for me.

 

The dose of methylfolate doesn't look huge for an adult - you'd expect an adult to need 400-800mcg of methylfolate if they were MTHFR+. Kids need lower doses - like 100mcg. But...everyone is different.

 

If the bottle was expensive, one option would be to stop it for a week and see what happens. Then if you want to re-introduce it, start with only one capsule/day instead of 3 and see how that goes. Also double check yourself to see if anything else has changed - stop anything? start anything else? any diet changes or recent cravings of something that's particularly high in any nutrient? any upcoming changes on the horizon - start of school? family changes? travel plans?

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Thanks for the feedback!

Initially I started with 1 pill and that seemed fine so we worked up to 3 pills. He was feeling more energetic and wanted to ramp up too.

 

What have I stopped? I stopped the Nameda. I asked him if he was feeling any more brain fog the past few days and he said definitely (after reviewing what that meant). So I added it back this morning and he seems in a much better place today with the 1 pill of supplement and the Namenda.

 

What have I added:

We also added ViraStop after tittering up the Neurochondria.

 

Changes? Yes, summer school is ending and he has a final tomorrow. He has done well in his first foray back into school since December 2012. It was a bit grueling, every day from 8:45-3:00. So far he has a B- & B.

 

IVIG?

I have been thinking of doing another one, but haven't been in that desperate spot where I want to pull the trigger on it.

 

OCD, anxiety and binge eating are our biggest issues. He had almost completely stopped eating a few weeks ago and we discovered that his thyroid was being over medicated. When we stopped thyroid treatment he seemed hungrier but still tortured by the thought if gaining weight. All through PANS he has had restrictive eating issues, it seems as though he took it a bit further.

 

We did a follow up blood test to thoroughly test and see how his thyroid is doing after two+ weeks off the synthroid/thyroid support.

 

Right now he is having his first session of a neuro psych evaluation. He is pushing himself to get back to school, but still has so much Anxiety. His school has agreed to keep him with his friends in Junior year, now everyone has to figure out how to create a schedule that works for him and his skills (thus the eval - school's idea, but I'm ok with it...now).

 

All his friends are away and returning 8/12 so I'm hoping that when they return that will help him feel a little better too.

 

I will check the ingredients and push the integrative neurologist to research his 23andMe further (today she asked me to send her the complete results).

 

Also awaiting urine test results on more mito dysfunction possibilities.

 

Thanks as always,

T.Anna

 

Ds16 - strep, Lyme, Bartonella, Coxsackie, HHV6, MycoP, etc.

Exhibited severe OCD in fall 2012, became non functional in January 2013-April 2014. Became remarkably better after 5 doses of CBD Hemp oil. Before that had 8 IVIGs, PEX, steroids, CellCept. last IVIG was 3/17/14 and CellCept was stopped around the same time.

Edited by t_anna
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