how did you treat the MTHFR mutation?

[pr40]

Please, tell us what you tried and what kind of success you had with treatments of MTHFR mutation.

[lfran]

methylfolate, which you can buy from iherb.com, helped my son tremendously. He has the C677T homozygous mutation. It got rid of major anxiety/panic attacks. He still has some OCD and tics. We're continuing to work on that.

 

Please, tell us what you tried and what kind of success you had with treatments of MTHFR mutation.

[rowingmom]

Even before DD11 was tested, and was subsequently found to be positive for a heterozygous deletion, our LLMD started her on the methylated forms of B6 (P-5-P, we use Klaire Labs 30mg 3x/week), folate (L-methylfolate, we use ProThera 1000ug 3x/week), methyl B12 (sublingual 1000 ug 2x/day), as well as liposomal glutathione (Essential Nutraceuticals 250mg 2x/day). We were taking P5P and L-methylfolate daily at these dosages, but I cut back to 3x weekly after some mention of the possibility of over-methylation reactions on the Lyme forum. I also supplement myself, my DH and DS with the methylated b vitamins 3x weekly. I have noticed an improved mood in all of us.

Edited November 13, 2012 by rowingmom

[LNN]

I think the two most important aspects of treating an MTHFR mutation is dosage and correct supplement. There is no single "right" answer about how to treat. Ideally, you partner with an experienced doctor to figure this out. But this is no easy task. From what I've heard, most of the Pandas doctors don't have experience and/or consider this to be a big deal. My own naturopath was also uninformed and even my LLMD, whom I respect greatly, has only modest experience and not specifically in terms of neuropsychiatric symptoms. There are a few DANs who are leaders in their field who seem to have a handle on this. So if you have the resources and are uncomfortable experimenting on your own, they'd be the ones to see (specifically thinking of O'Hara and Bock - or Yasko).

 

If you find yourself having to figure this out on your own, here's what I've learned from my own experiences:

1. Start low and slow

I can't stress this enough. Per Yasko's videos, I started my DD7 (one copy of the C677T mutation) on one drop of methylmate http://www.holisticheal.com/methylmate-b-nutritional-supplement.html (capsules also available but for kids, use the drops so you can tweak dosage with more precision). I dosed every day for a few weeks. As Yasko predicted, I saw an uptick in some mood issues after a week or so. Thought "oh good - it's a "herx-like" response. And maybe it was. Over 3 months, I build up to 3 drops/day. I was also using 500mg tryptophan to help DD with anxiety. Then evil child moved in. Skipping the gory details, I had tipped the scales and was overdosing the methylfolate. Too much can end up giving you the same rapid bipolar symptoms you can get from too little. (see http://www.mthfr.net for a case study description of a man who found he was ODing on the stuff and used 50mg niacinamide as an antidote). Eventually, DD ended up being her best at 1 drop of methylmate every OTHER day. Tho she only has one mutation, I've also found that she gets moody if she eats cereal fortified with regular folate or takes a multivitamin with regular folate in it - so I avoid these, even tho theoretically, she shouldn't be that sensitive to regular folate. Things are good, so I'm not gonna tempt fate. If you're homozygous, this might be even more of an issue.

 

2. There are several sources of methylfolate out there. There's a discussion on mthfr.net about the various forms. I took away the fact that you need to make sure you use L-methylfolate. I use Yasko's because it's the only one in a liquid form and since DD needs such a small amount, this works for us. Others require larger doses, so capsules from other retailers are probably just fine (e.g. I take 800mcg daily and feel good).

 

3. If you happen to be stuck figuring this out on your own, absolutely do not be adding or stopping any other meds or supplements for a month or two. My DD showed no major issues (except for the maybe herx thing early on) in the first month. It wasn't until month 3 that I realized I'd gone too far. This was all during allergy season, so it took me forever to figure out it was the methylation and not allergy. Try to keep things simple so you can tell if/when you need to back off. Doing this during cold/flu season will complicate things but it could also really help with the mood/rage aspect of a flair. So by all means, don't wait until summer. But do try to be as methodical as possible.

 

4. Keep niacinamide handy. It really helped calm rages when I went too far with dosing. (it may also help for those who are naturally overmethylators)(MTHFR people are generally undermethylators and should avoid excessive amts of niacin (vitamin B3) but everyone needs at least a little of the stuff so don't avoid it entirely).

 

5. L-methylfolate is for those with the C677T mutation. If you have two mutations (homozygous), you may need more than someone who's heterozygous. If you have A1298C mutations, TMG/DMG is the primary supplement to look at. Yasko talks about needing BH4, but that isn't available OTC. I'm sorry I don't have a lot of advice for A1298C - very little is written about it and I got lost in Yasko's discussion. I didn't force myself to delve into it. One caution- TMG is also called betaine. It is apparently NOT the same thing as Betaine HCL (which is widely available and marketed as a digestive aide). Something about the HCL changes the betaine. So if you're looking for TMG, don't get stuff with HCL in the name.

 

6. I know lots of people also use methylB12 in partnership with methylfolate. I don't. Partly because methylB12 is notoriously poorly absorbed orally -something like 1% survives the gut. So skip any combo methylfolate/methylcobalmin supplement you swallow. (or at least don't pay a premium for it). You can get a little better absorption by letting it dissolve under your tongue but not always practical for kids. If you really need methylB12, shots are apparently the way to go. I don't think there's anything wrong with taking it orally if it happens to be included in something else you're taking. I just wouldn't expect great results if you're taking it specifically for the methylB12 energy benefits. JMHO from my reading.

 

I think for some kids, this is one of those things like probiotics - it's a good thing to address and can prevent bad things, especially as our kids mature and have to worry about miscarriage, heart disease, stroke, and eye problems. For some, it will be a good thing but they'll still deal with major mood issues from Pans. But for a sub-group, treating methylation can be a jackpot. For my DD, this was THE major issue. In the same way that yeast or gut issues will be the big enchilada for other kids. It wasn't an issue for my DS (pyroluria was his jackpot). But if you know you have an MTHFR issue, leaving it untreated is just leaving a land mine in the field and it could potentially remove a major obstacle - now and in adulthood.

 

For those wanting to test for this, it's widely available from most commercial labs. retail cost is about $150. My insurance negotiated rate was $50 (my portion was 20% or $10 once I hit the enormous deductible). Here's Quest's test http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=17911 (they have a different test # if you live in NY).

 

edit - for those who asked about B6 - B6 has more to do with general "methylation" - especially the part of the cycle that converts homocysteine (a bad byproduct) into cysteine (good) and then into glutathione (essential). If you want to support the body's overall systems, I'd recommend P-5-P - the bioavaiable form of B6. My whole family takes P-5-P. But it has nothing to do specifically with any MTHFR gene mutation, at least not that I've come across. It's something I see as a good thing to add regardless of your MTHFR status (again, low and slow).

Edited November 13, 2012 by LLM

[nicklemama]

LLM said it all.......dosage and supplement. My DS sees a biomedical doctor who is treating it. DS takes B12 injections, P5P, a digestive enzyme, alpha lipoic acid, a multivitamin made for autistic kids, Omega 3 and 6, methylfolate. That's off the top of my head. I may have missed something.

 

I recommend seeing a biomedical or DAN doctor for direction in treatment.