Methyl Folate wow?

Discuss autism diets and biomedical treatments of autism.

Moderator: ModeratorBill

kulkulkan
Posts: 2075
Joined: Tue Mar 13, 2012 1:37 pm

Methyl Folate wow?

Postby kulkulkan » Mon Aug 27, 2012 12:51 pm

We have seen some big wows this past week from our 2.5 yr old ASD son - spontaneously expressive speech (manding/tacting) has gone up a LOT with a lot more variety, some back and forth conversation, and doing 3-5 word sentences all in correct context (he used to be mostly 2-3 word sentences). More importantly, social and emotional reciprocity has gone way up e.g. wants to play with his older brother, said bye with a hug spontaneously, gave a spontaneous kiss if pretended to be hurt, etc. Whether social or speech, his initiations has gone up so dramatically that therapists, preschool, and everyone else has noticed the positive change.

I am trying to figure out why. Only can identify three things: 1) we started methyl folate the week before (1mg every other day, want to ramp up to 1mg daily); 2) we reduced B-vitamins to every other day since should watch his B6 per Yasko results; and 3) he was very sick for the two weeks prior with a bacterial and viral infection and we caved and gave him antibiotics since very high fever - perhaps clearing the infections somehow changed the immune response/imbalance (he rarely ever got sick before). Personally, I don't think it is the lower B-vitamins dosing, so probably (1) or (3). We haven't done the CFD antibodies test but now considering doing that. Our son does have various hetero MTHFR/MTRR mutations.

Anybody seen gains or wow with methyl folate? Don't want to take it out to test if it changes anything as want the positive change to stick. On the negative side, seeing much more irritability/tantrums, and bit more hyper at times. Hoping the negatives are more of a detox thing and temporary. Haven't changed anything else.
Last edited by kulkulkan on Mon Aug 27, 2012 1:49 pm, edited 1 time in total.

Stjude0011
Posts: 309
Joined: Tue Jun 21, 2011 1:01 pm

Re: Methyl Folate wow?

Postby Stjude0011 » Mon Aug 27, 2012 1:08 pm

I'm going to say it could possibly be the methyl folate. We are using it as well and have also experienced many gains along with the negatives of irritability and tantrums. I've since brought down the dosage only to ramp it slowly again.
my boy is compound hetero mthfr. the methyl folate may have lowered my son's ammonia levels as well reason i say this is because i've mentioned in previous posts he went from tanning very well and last summer he wouldn't tan or burn at all and now he is back to tanning nicely.

kulkulkan
Posts: 2075
Joined: Tue Mar 13, 2012 1:37 pm

Re: Methyl Folate wow?

Postby kulkulkan » Mon Aug 27, 2012 7:26 pm

I am really hoping it is the methyl folate as that is very easy to supplement. We are doing baseline tests with RBC folate (which will likely be normal). Want to do the folate antibody test which has more diagnostic value and if positive, may need much higher methyl folate dosage.

I understand that Methyl folate is necessary for the BH4 recycle which is needed to get rid of ammonia. Don't think we have any ammonia issues (low protein diet) but would like BH4 to improve (maybe even prescription) to improve as it helps with serotonin.

alberta
Posts: 500
Joined: Mon May 30, 2011 7:20 pm

Re: Methyl Folate wow?

Postby alberta » Tue Aug 28, 2012 9:19 pm

I love methylfolate -- it was one of our bigger wows
Alberta

kulkulkan
Posts: 2075
Joined: Tue Mar 13, 2012 1:37 pm

Re: Methyl Folate wow?

Postby kulkulkan » Sun Sep 02, 2012 2:56 pm

Unfortunately the wow didnt stick :( Lasted one week and now back to baseline. Perhaps need to resupplement methyl B12. Not sure what else could it have been here.

mbzoltan
Posts: 261
Joined: Sat Feb 03, 2007 8:11 pm

Re: Methyl Folate wow?

Postby mbzoltan » Sun Sep 02, 2012 7:36 pm

Ben Lynch at MTHFR.net talks about the initial improvement followed by the stall or even regression and explains why. If you haven't already, check out his site -- he has forums where he will answer questions.

kulkulkan
Posts: 2075
Joined: Tue Mar 13, 2012 1:37 pm

Re: Methyl Folate wow?

Postby kulkulkan » Mon Sep 03, 2012 2:08 am

Thanks. Was aware of the site but hadn't really gone in depth. Looks like dosing and type of methyl folate is important. I had ramped up dosing aggressively to 1mg daily so will cut back to every other day again. Looks like for almost everyone, he also suggests over-methylation as the issue and using niacin to compensate for it.

GGO
Posts: 208
Joined: Sun Jun 03, 2012 8:02 pm

Re: Methyl Folate wow?

Postby GGO » Mon Sep 03, 2012 12:23 pm

Everytime we try methyl folate she cries nonstop for what seems forever. Yesterday when we gave it I flushed her with niacin and she was fine after. I don't know if we have the mutation or not. I just ordered Yasko. Will this tell me if we have the mutation? If we don't what folate can we supplement with? Can we just do folate or follinic? I know folic acid is fake and not good.
Kari

alberta
Posts: 500
Joined: Mon May 30, 2011 7:20 pm

Re: Methyl Folate wow?

Postby alberta » Tue Sep 04, 2012 3:18 am

Folic acid isn't fake -- but it's a form that kids who have folate receptor antibodies (FRA) and/or have a 677 or 1298 MTHFR mutation can't convert it to a form that the body can use (i.e. methylfolate) and folic acid just makes the folate receptor antibodies situation worse, too, if they have that. I haven't tested for it but I have a feeling that it's gonna be a test where it tells me the sky's blue because my kids react negatively to folic acid (it makes both of my kids just climb out of their skins) and I'm pretty sure they have FRA.
Alberta

GGO
Posts: 208
Joined: Sun Jun 03, 2012 8:02 pm

Re: Methyl Folate wow?

Postby GGO » Tue Sep 04, 2012 5:20 am

Folic acid is the synthetic form of folate. It doesn't occur naturally, it is compounded in a lab out of petroluem, this is why I said it was fake. I know folate is naturally occuring in food.
Garden of Life sells supplements with folate in them but almost all other supplements contain folic acid. This article clarifies the difference:
http://www.naturalnews.com/033273_folat ... _acid.html

kulkulkan
Posts: 2075
Joined: Tue Mar 13, 2012 1:37 pm

Re: Methyl Folate wow?

Postby kulkulkan » Wed Sep 05, 2012 4:02 pm

We are reducing folic acid intake for that very reason. Almost everything has folic acid and many supplements might just say folate (without specifying form, so by default I am assuming it is likely folic acid).

In addition to folic acid, also need to be careful of the form of methyl folate as there are several types. Apparently, L-5 form of methyl folate is most bioavailable (we are using 1mg capsules from Thorne Research which has the L-5 form with calcium).

kulkulkan
Posts: 2075
Joined: Tue Mar 13, 2012 1:37 pm

Re: Methyl Folate wow?

Postby kulkulkan » Fri Sep 07, 2012 11:47 pm

Although the early expressive language gains didn't stick, the level of interactions and social gains have definitely stuck. Just today when pretended to be sad/cry he spontaneously said "please don't cry" which nearly floored me. Also answering more abstract "why" questions accurately and in context (rather than providing memorized response before). We have reduced dosage to every other day 1mg.

JeniB
Posts: 5021
Joined: Thu Sep 04, 2008 10:10 pm

Re: Methyl Folate wow?

Postby JeniB » Sat Sep 08, 2012 7:08 am

my son did very well on the 5-MTHF form. He actually needed it to make thiamine work better. It can also be a clue that arsenic is an issue, needing reduced folate. Arsenic really messes up this whole pathway in a big way. If you have a deck on your house made in the 90's and even early 2000's then you can be tracking in arsenic all summer from your deck alone. Sealing it with a sealant helps a lot. But I think this is why my son regresses some in the summer, not just because of allergies and mold and copper from the pool, but going outside on the deck alot. My husbad developed intestinal issues after powerwashing that stupid deck and staining it. My neighbor developed heart issues after he did his. We all forget that treated wood is a big source of poisioning.
Jen
(mom of 3)

iherb referral code: HOF516
save $5 on first purchase

i-jerry
Posts: 144
Joined: Wed Dec 21, 2016 7:46 pm

Re: Methyl Folate wow?

Postby i-jerry » Wed Mar 22, 2017 8:08 am

how much Methy folate should i give to 5 yr child and his weight is 20kg?

Amberwrae
Posts: 1
Joined: Tue Oct 24, 2017 6:40 pm

Re: Methyl Folate wow?

Postby Amberwrae » Tue Oct 24, 2017 6:45 pm

Hi, I didn't read all the way through this thread but read the beginning posts.... I have been doing a lot of research on this and just ordered some Methyl folate for my non verbal 2.5 year old daughter. I read that if your using B complex vitamins it can contain Folic acid and since many people have the MTHRFR gene they do not do well with folic acid and it builds up inside of them. I would switch to single B vitamins. Especially 6 and 12. I also think if your not doing B12 shots the spray under the tounge works better than capsules. Good luck (;

Marya
Posts: 177
Joined: Tue Feb 21, 2017 4:14 pm

Re: Methyl Folate wow?

Postby Marya » Wed Oct 25, 2017 12:43 am

Amberwrae wrote:Hi, I didn't read all the way through this thread but read the beginning posts.... I have been doing a lot of research on this and just ordered some Methyl folate for my non verbal 2.5 year old daughter. I read that if your using B complex vitamins it can contain Folic acid and since many people have the MTHRFR gene they do not do well with folic acid and it builds up inside of them. I would switch to single B vitamins. Especially 6 and 12. I also think if your not doing B12 shots the spray under the tounge works better than capsules. Good luck (;

I agree with you, I had been taken B-complex which has normal folic acid, and since I have MTHRFR mutation, I think it wasn't benefiting me. So my plan now to use single B vitamins.


Return to “Diet and Biomedical Treatments for Autism”