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Hi -

 

My son has the gentic mutation for MTHFT c677t - homozygous. I am going to give him Methylcobalamin lozenges and folate. I need to start w/ very small amts. Does anyone know what the proportion should be? He is 125 lbs. The Methyl b12 is 500 mcg and the Folate is 400 mcg. I can cut the pills. Also, since I am a vegetarian (no pandas or anxiety or anything for me), I am going to try it out on myself first. I just figured I could use the extra Bs and I am alway so so tired w/ very little energy. Maybe it could help. Can't harm me right? Thanks.

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When you say "folate" - what does it say on the label? You need to be using a methylated form of folate when you have an MTHFR mutation because your body can't take regular folate (aka folic acid) and methylate it into methylfolate on its own. So we take a form that's already been methytlated/converted for us.

 

Here's an article that tries to explain the differences - tho no matter how many times I read it, it still confuses me http://mthfr.net/l-methylfolate-methylfolate-5-mthf/2012/04/05/ What i take away from it is that the supplement you take needs to say one of the following things on the label:

 

L-5-MTHF = L-5-Methyltetrahydrofolate = 6(S)-L-MTHF = 6(S)-L-Methyltetrahydrofolate

Good forms which are well absorbed

L-Methylfolate Calcium = Metafolin = Levomefolic Acid

Good forms which are all well absorbed

D-5-MTHF = D-5-Methyltetrahydrofolate = 6®-L-MTHF = 6®-L-Methyltetrahydrofolate

Avoid these

 

So, assuming your supplement is on the "good" list, then I'd probably start out at 200mcg of methylfolate for a 125lb person and at least the full 500mcg of methylB12 dissolved under the tongue = possibly 1000mcg. MethylB12 is reportedly very poorly absorbed so taking too much is very hard to do. You may end up at 2000mcg or even B12 shots, depending on whether you have a doctor involved in helping you and how much experience he/she has with treating methylation.

 

I'd stay on 200mcg methylfolate and 500-1000mcg methylB12 for a few weeks. If things seem stable, then move up to 400mcg of methylfolate. There's no set agreement on what your target should be, but since he's homozygous, he'll probably need a dose on the higher end. I've read that adults probably need @800 mcg but some need higher. You may find yourself going up to 1-2 or even 5 mg. But I'd get there very slowly. Give yourself several months to get to your target. Re-energizing the methylation cycle is like spring cleaning. The body will start cleaning out garbage as you get the cycle moving better.

 

You're best bet is to use blood work to track changes in his levels of folate, B9, homocysteine et al. You can browse thru mthfr.net for suggested lab work or post this question on the MTHFR Support FB page - there are professionals on there who treat this stuff for a living and know way more about it. The one thing I learned the hard way is to start low and take your time. You can also have a little niacinamide on hand if you realize you may have gone too high too quickly and see rages or mood swings. The niacinamide mops up extra methyl groups and helps the person calm back down. Read the case study on mthfr.net for details.

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Hi LLM --

 

The label says Metafolin/L-methylfolate so I think I am ok with that. Last time I tried to give DS methylcobalamin (b12) I only gave him 250 mcg of it with out anything else and he became hyper, couldn't control himself and panicky the next day in school. I brought him home and gave him 50 mg of niacin and he was much better w/in 30 mins (gave rescue remedy too). I don't want to screw this up again. I was told I should have given the methyl b15 w the folate.

 

BTW, his homocysteine levels were fine (low side of normal), his folate was very high which believeve is due to his body not using it correctly. Not sure about b9. Is it called something else? His main issues are ocd, anxiety, tics, impulsivity, lethargy.. I was hoping the Bs could help with these issues.

 

Thanks for your advice. It is always appreciated!!

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hyperactivity seems to be one of the side-effects. some say that it goes away. we had the same but after a week and had to decrease from 1000mcg to 500mcg for a 60 pound 5 year old. it may also depend on some kind of "cycle" how your kid reacts. i.e. the fact that your ds was hyper once on b12 does not mean necessarily that he will be hyper again.

did b12 help with any of ds's issue?

with us, for both kids, change was immediate, almost unbelievable. they were just turned off. that lasted for about a five full days. Bliss. I am not entirely sure how to understand it.

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Hi Pr40-

 

I've only tried it one time with my DS. He was very hyper, it was extreme...felt out of control and was crying (he is 15) on the phone to me from school so I immediately stopped giving it. I don't want him feeling that bad again. I agree that it may have to do with their particular "cylce". I took double the amt at the same time he did (also w/o methylfolate) and got a headache.

 

Did you give it w methylfolate? Did it only last 5 days or are you on your 5th day of giving it? Thanks.

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First we gave only methylcobalamin b12 and kids became hyper after a week. then we tried half a multivitamin pill from Seeking Health Optimal Multivitamin which has mb12 and methylfolate and few other things. Reaction to that pill was much better.

As you said, when response is hyper, Niacin should help which is what we did. In your place, I would consider letting your son bring Niacin pill (50mg) to school. apparently, even a small amount of it should help mop-up the surplus methyl-folate and cobalamin if he gets hyper.

question is if you saw any improvement on it. as I said, with our kids, it was almost instant.

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Sorry - B9 is folate. I meant to write "You're best bet is to use blood work to track changes in his levels of folate, B12, homocysteine et al."

 

On the niacin - in our school system, no child is allowed to carry medication. All medication must be dispensed by the nurse and with a doctor's note/signed form. If a child is caught with a pill, authorities might be called.

 

As pr40 says, methylfolate and methylB12 need to be taken together. On the bright side, you know the methylB12 got absorbed!

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It really needs the methylB12 to do it's job well. But I know you're leary. You could try adding methylfolate by itself for a few days and then adding methylB12 - sort of priming the pump if you will...and having some niacin on hand in case...

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  • 4 weeks later...

Anyone using the prescription form Leucovorin for Folate deficent?

 

I have been going at a snails pace with trying to give the B-12, Fola pro - folic Acid - chopped up pills, I have yet to give the Prescription folate Acid from all the stories hear from other parents.

Ideas?

 

Thanks

Allie

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Anyone using the prescription form Leucovorin for Folate deficent?

 

I have been going at a snails pace with trying to give the B-12, Fola pro - folic Acid - chopped up pills, I have yet to give the Prescription folate Acid from all the stories hear from other parents.

Ideas?

 

Thanks

Allie

We're using leucovorin. However, we are also using Methotrexate once a week (immune suppressant, blocks folic acid receptors). The day after the methotrexate my daughter gets a high dose of leucovorin, then maintenance daily for the rest of the week. But, I've adjusted the dose (down). The neuro rx'd 15mg tablets, every 6 hours the day after metho and 1 tablet/day the rest of the week. When I tried it at that dose (even the day after metho, when she is VERY depleted), she was bawling, crying and sobbing all day long. So I cut it back to @ 1/4 tablet per dose and it works pretty well.

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We just started using transdermal

B12 from lee silsby compounding (makers of enhansa) it's a cream that you rub in. We also got trabsdermal nac. I am going to use the b12 every other day with the mthf. 500

Mcg of mthf every other day seems right for dd 65 pounds with one copy of 677t. Higher doses seem to have a negative effect on her too early to tell but will post if I see any changes positive or negative .

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