Stopped methylation supplements - wow

[mama2alex]

After speaking with the doctor, I stopped all of Alex's methylation supplements on Tuesday. The wild mood swings, defiance, nastiness and crankiness went away almost immediately. Unfortunately, his anxiety has gone back up some. So the bad news is we got it wrong the first time, and the doctor possibly doesn't have as good a handle on this as he (and I) thought. The good news is I think this means that if we can get the supplementation just right, we may be able to bring his anxiety way down or possibly eliminate it. I have hope for the effect on attention as well.

 

That said, I'm going to list out his SNP's and the supplements he was on (he's still taking the multi). If anything jumps out at anyone in terms of what we were doing wrong and/or how far off the mark we were, please let me know. I am continuing to read up on this as fast as I can, but definitely don't have a handle on it yet.

 

Homozygous (+/+) for:

ACE

CBS A360A

MAO A

SUOX

VDR Bsm/Taq

VDR Taq

BHMT 08

 

Hetero for:

COMT - all 3

MTHFR A1298C

MTHFR P39P

MTRR S175L

MTRR R415T

MTRR S257T

MTRR A664A

VDR Fok

BHMT - all except 08

 

TMG – 175mg 2x/week

Folic Acid – 5,000 mcg 3x/week

Folic Acid – 50 mg/day

Zinc Picolinate – 25mg/day

B12 (methylcobalamin) – 1mg every other day

Folate (calcium folate) – 1600 mcg/day

 

Coenzymate B Complex:

B6 (from P-5-P) – 5mg/day

Folic Acid – 200 mcg/day

B12 – 430 mcg/day

Niacin – 20mg

Thiamin – 6.5 mg/day

 

500 mg blend of NAC, ALA, L-Theanine, and CoQ10/day (TheaNAQ)

 

Multi:

8mcg Molybdenum

65mg calcium

65 mcg folic acid

33mcg B12 (cyanocobalamin)

3mg zinc

8mg Niacin

 

Phosphatidyl Choline – 450mg 2x/week

[Hopeny]

I was giving WAY too much MTHF for my DD's single copy 677T. She developed a skin picking compulsion and other behavioral issues that went away when I stopped. Now I give a minute dose of MTHF only rarely and B12.

[LNN]

Mama2 - when you list folic acid, what do you mean? regular folic acid? folinic acid? methylfolate? Why were you supplementing a megadose 3x.week and also folate plus folinic acid pus some in his multi? My DD takes 67mcg of methylfolate every other day. If she took this much, even of methylfolate form, she'd be evil and a complete blubbering, angry mess. So the first thing that jumps out is you may be using the wrong form and you are probably using way too much.

 

I don't think you're giving enough B12 - it should be every day and with his VDR Taq ++ and MAO+ and COMT+/-, it should probably be hydroxyB12, not methylB12

 

For your DS, I'm not sure the coenzymate B is the right blend. My son and I use this and like it a lot. But neither of us has MTHFR issues. My DD who does have MTHFR +/- wouldn't do well on this because it contains regular folate, which she can't process well.

 

You list CBS +/+, so he should not be taking NAC or ALA. NAC makes my DD a flippin mess and it screwed up my liver enzymes and made me depressed (she and I are both CBS+/-). She takes CoQ10 as a separate supplement (be aware the CoQ10 comes in 2 forms. The better absorbed form is pricer).

 

For CBS, it doesn't look like you're giving enough molybdenum. The CBS people in my family take 75-100 mcg/day.

 

I can't comment on the TMG - have no experience with it.

 

So I think it would be good to give his body a rest for a few more days, then slowly re-start with one supplement at a time. You know I'm an art major and not a doctor. But if you want to discuss offline, PM me.

[mama2alex]

The folic acid is just plain folic acid. In the Coenzymate B Complex its listed as "Folate (as folic acid)." This is something that really confuses me, and I haven't yet found a document that explains the differences between all of these - folic acid vs. folate vs. folinic acid vs. methyl folate, etc, as well as methylcobalamin vs. methyl B12 vs cyanocobalamin vs. hydroxyl B12, etc. All the terms make me a little crazy!

 

As for why I've given him what I have, I've just been following doctor's orders without having done the research myself. I was too brain fogged to even tackle the reading this past spring and for much of the summer. Its astounding to me that the doctor could have gotten it so wrong.

 

This week I started to understand/think that we should be giving him molybdenum and asked the doc about this when I called to tell him my suspicions about the supplements. He gave me a vague answer about some kids needing molybdenum and some needing manganese, but as far as I can tell he's added neither to the protocol (just what was already in the multi).

 

He's taking 50mg "Reduced Form CoQ10 as ubiquinol" (UBQH by Integrative Therapeutics). We added 12mg of just plain CoQ10 from the Coenzymate B Complex this summer, but I've stopped that supplement now. He's been on the UBQH since the winter when he tested low on CoQ10 and now tests in the normal range. I haven't stopped the UBQH.

 

I am on Chapter 3 of Yasko's book that you linked to and have read the heartfixer doc. Any advice for putting this all together faster? I'm not a fast reader.

 

Thanks for taking a look! I may PM you in the next couple of days with questions.

[peglem]

Folic acid vs folinic vs methylfolte. Folic acid is usually the synthetic form that was developed as a stable form for fortifying foods. But, folic acid is water soluable, which means in order for it to get into cells w/ fatty acid cell walls (nervous system cells, for example) it has to go through the methylation process. I'll see if I can find the diagram of that process and post it. Anyway, if you have a problem w/ efficient methylation then your cells can become deficient, even in the face of high serum levels, because the cells can't use it in the unmethylated form. Folinic acid is folic acid that is partially processed, but not fully methylated. Methylfolate is already in the form that the cells can use, as is methyl B12 (methylcobalamine is methylated B12).

 

I hope this works to paste coversion diagram:

Edited September 21, 2013 by peglem

[peglem]

Shoot, didn't work.

Edited September 21, 2013 by peglem

[LNN]

I will butcher any explanation of the technical differences between folate/folinic acid/methylfolate. So here's my sticky note version:

 

folate = vitamin B9 - fine for those without any MTHFR issues, bad for those with MTHFR mutations and should be avoided if you have mutations (folate is in fortified cereals, fortified breads, most mutlivitamins - avoid, esp. if you are MTHFR +/+

 

folinic acid - folate gets converted in the body into folinic acid. It's converted into methylfolate for methylation but in the folinic acid form, is used for other biological "things" which of course I can't recall right now.

 

methylfolate - in people without mutations, they take folate, their body converts it into folinic acid and then into methylfolate. It's the methylfolate form that's necessary for methylation (methylfolate + methylB12 work together as a team). If you have an MTHFR mutation, your body can't do the folate=>folinic acid=>methylfolate conversion. MTHFR +/- people can only do this conversion at about 50% efficiency and +/+ can only do this at about 10% efficieincy.

 

So for your son, he should only be taking the methyl form. What's more confusing is that there are different forms of methylfolate (eye roll, deep sigh). Here's Ben Lynch's article on the differences http://mthfr.net/l-methylfolate-methylfolate-5-mthf/2012/04/05/ Don't worry about understanding it. Just use his good/bad list when you're deciding on a supplement to buy.

 

on B12 - cyanocobalamin is the most common form you'll see in mutlivitamins. It's a synthetic form that converts to methylB12 in the body but in doing so, leaves behind traces of cyanide. It's cheap but it's also garbage.

 

HydroxyB12 is a medicinal form of B12 made from bacteria. It's bioavailable but is best for "overmethylators" because a methyl group is used in order to convert it into methylB12. So for those with COMT+, MAO+ or VDR - this is a good form. (this would probably be your DS's situation)

 

AdenoB12 and methylB12 are the forms found in nature. this is what you need for proper methylation. If you have MTHFR and no "overmethylating" genes tipping the scales, then these two forms are best for you. Methylcobalamin and methyl12 are the same thing. I use methylB12 only because I'm too lazy to keep typing methylcobalamin.

 

PM me on the rest.

[mama2alex]

Thanks to all 3 of you for responding. This helps, but I still have a long ways to go.

 

Quick question on SUOX - I read in the heartfixer doc that +/+ on SUOX means there is no defect. In other words, the sulfite oxidate enzyme works fine if you are +/+. Is that correct? (So confusing!)

 

I've ordered molybdenum from Amy Yasko's site and will start low and slow when it arrives. How do you know when you're giving enough?

 

Also, I am working on reducing sulfites/sulfates via diet. Once it arrives, I'd like to have him on molybdenum for at least 2 weeks before proceeding. Did you all run any tests before proceeding to the next phase (treating MTHFR, MTRR, COMT, etc)?

 

LLM - figured out through my reading that TMG is used to treat BHMT defects (which aggravate CBS). But TMG is a methyl donor and above you seemed to be saying that Alex is an "over-methylator." So does that mean anything that is a methyl donor is bad for him? Also, how do you know he's an over-methylator? I haven't gotten that far in my understanding.

[LNN]

I'd post your SUOX question on Facebook's mthfrsupport page. I'm not that up on this one since 23andMe didn't test it.

 

On the moly, RDA is 75mcg, which is 3 drops of Yasko's liquid. That's what I give daily. If you use the sulfur strips to test, you can adjust moly based on that but I wouldn't go about 150-200 on a regular basis. Yasko et al suggest using the strips to tell you when you can move on to other mutations. Some here have used them and perhaps they'll chime in. I didn't use the strips.

 

I'm only guessing Alex is an overmethylator.because of his VDR Taq, COMT and MAO statuses. You'd need to read thru the heartfixer comments and use your own knowledge of Alex to get a feel for whether this is so. You can have a genetic mutation without that mutation being switched "on". So you can read that xyz gene can cause something but if you don't see that something, maybe the mutation hasn't been switched "on" yet or ever. But if he is an overmethylator, yes, he'd want to limit the amounts of methyl donors he takes. Doesn't mean he'd avoid them entirely. You do need a little of every nutrient. But you wouldn't want to supplement large doses of a methyl donor.

[pr40]

If you are using hydroxy B 12, what is the brand? I could only find the one made by AOR.

we just got our 23andMe results back. I am glad we did it. I am now wondering how much of our kids' Panadas symptoms will disappear if we address methylation the right way.

there was one time when we first started only b12 methylcobalamin and the PANDAS was gone for a week or so.

[LNN]

Pr40 - Perque is hydroxyB12 http://www.perque.com/product_sheets/PERQUE-Activated-B-12-Guard.pdf Amazon and many online vitamin sites carry it.