Methyl help needed

[Betty04]

Hi

 

My son tested homozygous for MTHFR C677. I started a very low dose of Methyl Guard from Thorne Research and after 1 week his tics are significantly worse. This follows a dramatic improvement after taking liposomal glutathione. Any Methyl "experts" have any insight into why the increase? I stopped it yesterday but the tics are still bad. Any way to reverse it? I was thinking of giving Enhansa? The product I gave had the following ingredients: (I used one capsule over 5 days- so the dose was not as high as below)

Three Capsules Contain:

Riboflavin (as Riboflavin 5'-Phosphate Sodium) 90 mg

Vitamin B6 (as Pyridoxal 5'-Phosphate) 45 mg

Folate (as L-5-Methyltetrahydrofolate from L-5-Methyltetrahydrofolic Acid, Glucosamine Salt) 3 mg

Vitamin B12 (as Methylcobalamin) 3 mg

Betaine Anhydrous (Trimethylglycine) 1.8 g

 

Thanks so much for any help!

[LNN]

These are high doses of methylfolate and methylcobalamin to start out with. I'd suggest cutting the dose into 6ths - if these are tablets, cut in half and give one half of one tablet for 1-2 weeks, then build up. If these are capsules, open the capsule and sprinkle half into a spoonful of something. You may end up at this dose, ebing homozygous. But you need to start low and slow.

 

If a system has been dormant/sluggish, you will experience a fair amount of detox as the system re-starts. You don't want to crank things up to full speed all of a sudden. Chances are, if you drop to 1/6 the current dose, you should see tics resolve over the next 2-5 days. Personally, I wouldn't add anything unless you've used it before without incident. Otherwise, you won't know if it's the methylation supplements or the enhansa causing any subsequent issues. I think I'd give it 2-5 days to clear out and then re-assess whether you need to add anything else. JMHO

 

edit - for a point of reference, my DD @60 lbs is heterozygous and takes 67 MICROgrams (mcg) of methylfolate every other day and 1000mcg methylcobalamin every day. My DH heterozygous takes 800mcg methylfolate every day and 1000mcg methylcobalimin every day. So 3 mgs of methylfolate is almost 4x more than my DH takes. Granted, he is only heterozygous. So 3mg may be a good end point for your son but probably not a good starting dose.

Edited July 19, 2013 by LLM

[Mayzoo]

In case you are not aware, 3mg is 3000mcg. I agree with the dose reduction for now and see what happens. Have you done a complete genome via say 23andme or just the MTHFRs? There are other polymorphisms that may affect how you approach the MTHFR mutation.

 

My daughter is currently taking 100mcg of methyfolate and 1250mcg of hydroxycobalamin (via a patch) every day.

Edited July 19, 2013 by Mayzoo

[Betty04]

Thanks so much for the response. I thought I was going slow since I cut one capsule into 5 doses so that would be about 200mcg daily. My son is also 60 lbs so LLM's daughters dose of 67 mcg every other day puts that in perspective! This was the product recommended by our doctor but I am questioning the additional B's. It seems both of you supplement with B12- is that bc it is necessary with the methylfolate or you are using B12 to address other issues. My son has always had an increase in tics each time I have tried B6 or P-5-P so I was hesitant to use this product since it has a high dose of this B as well - but I thought maybe the combination would prove helpful. So I guess I'm not sure if its a dose issues or a problem with all the B's combined. Can I just use plain methylfolate or is it necessary to have other B's on board? Thanks so much for all the help!

[Mayzoo]

I believe you need a b12 with methlyfolate as they work synergistically. From what I have read, using one or other alone usually causes an imbalance of the non-supplemented item, and a lower absorption rate of the one you are giving.

Edited July 19, 2013 by Mayzoo

[pr40]

when you give too much b12, niacin helps mop the surplus up.

I want to join the chorus in suggesting that you need to start with much smaller doses.

I would also suggest that you may want to start with mb12 alone. it is poorly absorbed and it is not easy to overdo it. we did manage do overdo it after giving it continuously for two weeks.

and then add other supplements.

[Betty04]

Thanks- I suspect the B6 is the problem and not B12. We did b12 injections with no adverse reaction many years ago but B6 or P-5-P always results in an increase in tics. Any suggestions on a good brand to get for B12? I have Metagenics methylfolate alone but don't want to try it without the B12 on board. I am waiting though the weekend to see if things calm down off the methylfolate and then I'll think about trying a different combination. Thanks again for all the help!

[LNN]

You do need to take methylB12 and methylfolate together or you get a folate trap. They need each other as co-factors. But as Pr40 says, you can start the methylB12 first if you want to better guage your build-up - but I'd try to add some of each instead of getting up to a large dose of B12 and then adding the methylfolate. You need one to "metabolize" the other. He also gives a good suggestion on using niacin (vitamin B3) as a good "antidote" if you give too much methylfolate. It mops up the excess methyl groups. You can use a small (50 mg) dose of niacinamide (or non-flush niaciin). Regular niacin can cause the skin to flush temporarily. Niacinamide doesn't cause the flush. Most niacinamide supplements come in mega doses, so you'd need to empty most of the capsule. But when we were trying to zero in on my DDs dose, I OD'd her more than once and a quick sprinkle of 50mg of niacinamide, hidden in the creme of an oreo, stopped her bi-polar raging within the hour. But on a regular basis, she avoids mutlivitamins with niacin because they usually have too high a dose for her.

 

Because she has very specific needs for such a low dose of methylfolate, I've not found a good B complex to use for her. So she takes the methylfolate (in liquid form - 1 drop of this http://www.holisticheal.com/methylmate-b-nutritional-supplement.html ) and the methylB12 http://www.sourcenaturals.com/products/GP1217/ separately. I'm still on the lookout for a B complex but for the time being, we supplement individual vitamins - lots of pills but we each get what we need in the right doses.

 

All of the Bs are important for a number of body functions and they do work together. But an individual's need for each one doesn't fit neatly into some RDA table. Not everyone can handle large doses of B6 or even P-5-P. B6 is really important for detox and glutathione production but the dose can vary by person. My son and I need a high dose because we have a condition called pyroluria (a genetic condition that causes a zinc and B6 deficiency). My DD and DH have low tolerance for B6.

 

It sounds like your son does too. But... it could be that he has methylation blocks - clogs that are keeping things from running smoothly. It's possible that he's not ready to handle the detox that the B6 provokes - there may still be bottlenecks up stream. It could be that once you get the methylfolate/B12 dosing dialed in, you could add small doses of P-5-P back in and see what happens. It might be ok then. Or maybe not. It's trial and error. But like Mayzoo, I've found 23andMe testing helpful in figuring it out for each family member.

Edited July 19, 2013 by LLM

[nicklemama]

I use Klaire Labs P5P, cut in half, half 30 min before breakfast and dinner. That is how it was recommended for DS. He's been taking it for about a 1.5 yrs now. Tics are not a major issue. He occasionally has transient mild eye tics that seem to go with illness. His main presentation is anger, irritability, OCD. He had chorea last summer that was cleared up with a 5 day steroid burst. He's got a virus now and is rolling his shoulders a bit. I've seen nothing I could relate to P5P. Everything I've started him on has been started one at a time.

[bigmighty]

http://www.empirical-labs.com/product_p/liposomalmethyl.htm Does anybody else take the liposomal methyl b12 w/methylfolate from empirical labs? It's a liquid so very easy to figure out a good dose. Do a few drops a day for a week, then try to add an additional drop the following week and see what happens.

Edited July 20, 2013 by bigmighty

[Betty04]

LLM- does the niacin just counteract the B12 or the methyl folate as well? I doubt the B12 was the problem since he took a high dose in the past via injection and the oral form is poorly absorbed.

 

Big mighty- the empirical labels product looks very interesting- hopefully someone can comment on the lab or product.

 

Thanks everyone for the input- Lots to think about.....

[bigmighty]

The empirical product is supposed to get nearly all of the product absorbed with very little waste. That's what appealed to us. DS is 15 and weighs 115. He just started three weeks ago and takes 4 drops per day at present. I tried 5 drops a couple of times without telling him and he became savant-like, but oddly inconsistent. Wanted to tell me every weekly spelling word from 4th grade in order from memory, but could not add 8+ 3 without a calculator (he will take calculus honors in the fall). Needless to say, we are back to 4 drops. But it is very obvious that a small amount is all that is needed.

[Betty04]

Thanks again for all the help! I just gave my son about 25 mg of niacinamide - will post an update on his tics. So appreciate all the advice!

[nitshel]

Hi- Am new to this thread (came over from the PANDAS thread) but am curious. We feel that our son may have methylation issues. We had sent saliva to 23&me but were told we need to send another sample in - this will take another 6-8 weeks.

Some questions:

 

1. While we wait for 23&me results, can we start off with the methylfolate+methylB12 combination (small doses and work our way up)? Is that a good place to start methylation from - or is there another set of supplements preceding this that are more foundational?

 

2. How long after the methylation supplements does one see a benefit typically (if there is such a thing as "typical" with our kids)

3. Where does one buy the methylation products from? Whole foods?

[LNN]

Nitshell - hang in there on the 23andMe - my DH had to redo his test too. It was hard waiting but worth it.

 

I personally wouldn't start methylfolate+methylB12 unless you know that you have an MTHFR defect. If you don't have this defect, you don't need the methyl forms of these vitamins. You can handle regular B9 and B12. Yasko - the guru who'se written the most about the topic, suggests treating a CBS mutation (if there is one) first. I didn't do it in this order b/c I had MTHFR results 6 months before 23andMe became affordable, so I treated for what I knew to be a problem. But I wouldn't just start taking methyl forms of vitamins without knowing your MTHFR status. My son has normal MTHFR and giving him methyl forms of supplements would make him angry and racy. It's not a good thing for everyone.

 

As for how long to see progress, it depends on how many methylation defects you're dealing with and how many things you get "right" out of the gate. When I started giving my daughter methyl supplements, I started too high and it wigged her out. Had to go thru a series of trials and errors. In general, I can see if something's having an effect in a matter of days to a matter of a few weeks.

 

There is no universal place to start or core supplements everyone should use. It's very individual. Some supplements you can get from amazon, some from health food stores and a few, like methylfolate, can only be found from a few sources. Yasko's site - holisticheal.com - is the only place i've found methylfolate in a liquid form without additional ingredients.

 

To get started on methylation, I'd start here http://autismnti.com/images/Website-_Yasko_Education.pdf Then when you get your results, post and one of us will direct you to the sites you need to use to help you interpret those results. the basic 23andme report won't be much help. You need to spend a few minutes data mining to get started.