MTHFR support group

Hi everyone,

 

I’m five years post benzos and generally doing well.

 

Recently, I learned that I am homozygous for the C677T MTHFR genetic mutation. I’m bumbling around trying to learn how to supplement appropriately. I’m on MTHFR Facebook support groups and they are helpful. But they do not understand how benzos and the aftermath affect a person. Sometimes I even find people advising taking a benzo.

 

So that’s why Im starting this thread; I’m hopeful that we can find common ground and help one another decipher information.

 

A snapshot of me right now — I feel pretty much recovered from ridiculously high doses of benzos. I went back to school at 60 (I know) , got a masters in counseling and now I’m working toward licensure. I’m working four days a week with people who are addicted to various things and usually justice involved.  Maybe it was the stress of school that has caused my autoimmune numbers to skyrocket again. I’ve had a bunch more testing done and that’s where the MTHFR came up. It explains a lot, especially the slow detox of drugs.

 

My symptoms right now are fatigue, burning mouth, tinnitus and sometimes a breathless feeling and like I’m going to pass out. The B vitamins seems to confuse the issue, too. I usually feel worse when taking them, yet I feel like I should be taking them to help my methylation pathway.

 

So join in here if you are affected by this. Lets work together and figure it out!

Flip

Hi Flip, I was tested today for MTHFR 2 mutations but won't have results for 10 days. I've already read much about it and, of course, I can see how a lot of negative physical and emotional stuff in my life could be explained, so I'm anxious to get the results and I'll be back to let you know how it goes. I hope the best for you and will send lots of good prayers, thoughts, and juju your way! Hugs! JJ

Hi.  I really know zip about this but apparently do have two sets of abnormal gene  c677t.  So what does this mean??  Does it have to do with whether you take folate or not or some such???

Barbara, I don't yet understand it, either. Maybe Flip or another knowledgeable soul will chime in soon! 

I am far from knowledgeable about his topic. It is incredibly complicated. Have a look at this article and you can see from the graphics that it is sort of overwhelming in complexity.

 

http://www.autismnti.com/images/Website-_Yasko_Education.pdf

 

So far I have ferreted out just a few things for sure:

 

❇️ One allele with the polymorphism makes us detox about 30% less efficiently

❇️  Two allelle is about 70% less efficiently

 

Something that makes it worse is that we started adding synthetic folic acid to processed foods to prevent birth defects related to not enough folate consumed by pregnant women. We do not process folic acid well. That might be the most important first step - eliminating foods and vitamins with added folic acic.

 

All the forums recommend supplementing with the methylated versions of folate and B12 but I find I do NOT handle them well. I get too anxious, breathless, hopeless when trying even.

 

Still trying to figure out what to do. 🤔

Thanks, Flip, for that great bit of info.! I'm still waiting on my bloodwork results, and when I get them I'll be back to post them here.

I hope you will be negative Joantics. 🙏

Following.

 

I can't tolerate large doses of methylfolate, such as Deplin, or Vitamine B, but I'm good with only 30 micrograms of Hydroxy-B12 (I have to order Pharmax liquid and take three drops), and 1800 micrograms L-methylfolate from a health food store. That's micrograms, not milligrams. I've taken this all during withdrawal (more than two years), and believe it helps my depression and perhaps other things. It was recommended by my psychologist, a good guy with much knowledge of genetics and pharmacology. You might want to try it.

 

MirandaJane

This is interesting MirandaJane. I will definitely be looking into tiny doses.

How are you doing in general? Something that has plagued me recently is the sensation of a burning mouth. It seems I either have that or a breathless, anxious feeling. Have those things ever happened to you?

Hi.

Miranda James, lithium?  I see it in your .sig does that help with MTHFR abnormalities?

 

thx

Am having horrific withdrawal.  But have been on thee things 35 years or so. ;(  Open to suggestion and may try updosing.

For those of you who understand these results, here they are--I received them today but I'm not sure what it means.

If you'd please help me out I'd be extremely grateful to know if/how this affects my recovery. I still feel like I'm in acute, even though this is Month 4. Thank you in advance!

 

"Heterozygous MTHFR c.1286A>C: One copy of the MTHFR gene variant c.1286A>C (previously designated A1298C) was detected, but the c.665C>T (previously designated C677T) variant was not identified. This genotype is associated with intermediate levels of enzyme activity, but is not causative for an increase in plasma homocysteine levels, or an increased risk for arteriosclerotic coronary disease or venous thrombosis. Dose requirements for medications affecting folate metabolism may be lower."

 

If this is not enough info., there's more. I just didn't want to bore you if this was enough to know what it means.

 

Do you know ben lynch? He is someone who would be able to consider benzo in the mix, because his personality is that way.

Joantics - this is a decent FB group, especially for the interpretation of test results..

 

https://www.facebook.com

 

Hope the link takes you right to the group.

 

Generally I think your results are good news though. You have only one 677 allele with the polymorphism, so that means your methylation and detoxification ability is a little slower, but still quite functional.

 

See if that group can give you info and then come let us know what they say.

 

Ben Lynch, who Corsair referred to has a couple of sites. The one that sells his special vitamins is

 

Seekinghealth.com

 

The one with a TON of info to wade through is

 

Seekinghealth.org

 

 

Flip,

 

so if I have two bad genes (same one), means taper more difficult since I'm 70% less efficient at it?

 

Maybe that is what is so wrong with my taper.... hmmmmm.

Thank you to Flip and Corsair for the good news and the resources to help me learn more about MTHFR! I'll be back with any questions. It's so encouraging to know there are still plenty of people who truly ARE willing to help others, even from so many miles away.

Hi - I'm "compound heterozygous for MTHFR (C677T, A1298C) -- all I'm doing is avoiding folic acid foods and supplements but pretty lost.  I think I can get B12 injections but what does that have to do with methylation?  I avoid environmental toxins like bleach.  I eat more folate green leafies but lost.  W

Hi everyone,

 

I’m five years post benzos and generally doing well.

 

Recently, I learned that I am homozygous for the C677T MTHFR genetic mutation. I’m bumbling around trying to learn how to supplement appropriately. I’m on MTHFR Facebook support groups and they are helpful. But they do not understand how benzos and the aftermath affect a person. Sometimes I even find people advising taking a benzo.

 

So that’s why Im starting this thread; I’m hopeful that we can find common ground and help one another decipher information.

 

A snapshot of me right now — I feel pretty much recovered from ridiculously high doses of benzos. I went back to school at 60 (I know) , got a masters in counseling and now I’m working toward licensure. I’m working four days a week with people who are addicted to various things and usually justice involved.  Maybe it was the stress of school that has caused my autoimmune numbers to skyrocket again. I’ve had a bunch more testing done and that’s where the MTHFR came up. It explains a lot, especially the slow detox of drugs.

 

My symptoms right now are fatigue, burning mouth, tinnitus and sometimes a breathless feeling and like I’m going to pass out. The B vitamins seems to confuse the issue, too. I usually feel worse when taking them, yet I feel like I should be taking them to help my methylation pathway.

 

So join in here if you are affected by this. Lets work together and figure it out!

Flip

 

Following......

 

Also, does anyone know how to go about getting these tests for someone located in Canada?

 

All the best,

 

-RST

Fliprain - I am six months post-jump and finally improving. Funny you should bring up burning mouth; I've started feeling that just this week. However, the crown I got on a molar on Jan. 15 may have something to do with tenderness in my mouth. I'm sleeping better and having several good hours per day, but still much nerve pain throughout my body, depression, and lots of anxiety and anger at many people who have trashed my life.

 

MirandaJane

Flip do you have the name of the FB group?  The link does not work for me and wondering which you think is informative.

 

Thank you!

did you start out with magnesium and b6 too? I'm going to start that now, as ben lynch said that if you have problems with glutamate you should start there. Did you do that and did it work? (maybe i'm too hopeful)

B6 supposed to help?  Does it have another name, btw?

 

Interested... but know cannot tolerate magnesium.  Have tried that several times in different forms.

 

Thx for info.

The support group I follow on FaceBook is MTHFR C677T Support Group.

 

Y’all, I absolutely do not have answers. I do know that yes, avoiding folic acid is essential, and that eating a Whole Foods diet can only help us.

 

But we have to be careful about randomly supplementing. That’s what I thought would work in the beginning but then I started getting anxiety from hell, and brain fog that left me feeling stupid and dull.

 

When we supplement, we need to try one thing at a time for several days and keep a record of how we feel.

 

And we need to measure things. Just because we have the MTHFR polymorphism that doesn’t necessarily mean it is expressing. It’s like having the breast cancer gene but not having breast cancer or the Alzheimer’s gene but not having Alzheimer’s. Life style makes a HUGE difference in how genes express.

 

If anyone is getting ready to have blood work done I would suggest they do

B12

Folate

Homocysteine

Methylmalonic acid

 

Someone asked about B6 and zinc. I can’t say for sure. I tried them this summer, but didn’t notice anything good or bad from them. Let us know your experience if you do try them.

 

Wishing everyone a great day and weekend!

Flip

Thanks for the info Flippy!

Ok will let you know! I'm going to try this type of b6 (because of the different forms of b6 this would be the most absorbable)

Regarding magnesium i'm now using a powder that is 100% magnesium nothing else (it's bitter yes but i'm so allergic to any type of added substance so i need to be carefull) Did you use one without added ingredients barbaraave?

 

https://en.wikipedia.org/wiki/Pyridoxal_phosphate