MTHFR support group

[[Co...]]

it would be great though to get a test for b6 too.

[[Fl...]]

Let us know how it works for you!

 

I did a test spectracell test that measured levels in tissues. Let me go look and see if B6 was included...🤔

[[Fl...]]

Yes, the B6 was included and it was fine. 👍

 

[[Ch...]]

Hi everyone.

I’ve also recently found out I am heterozygous for MTHFR C677T. I’ll try to keep a watch on the group to get any tips or advice. Is it okay to start supplements like methylfolate and B6 in withdrawal? Could it possibly help?

[[Ba...]]

Champion,

 

 

I don't know.  I have two of them, does that make me same situation as you?  I don't know what to do either!

[[Fl...]]

Here is a free (for now) webinar on this topic put on by Ben Lynch.

 

https://go.dirtygenessummit.com/events-on?inf_contact_key=a6f1939cb6a8267ec6364dc25a84e263ee191afc24a1bfd805aed0b917246dd6

 

His new book, Dirty Genes is coming out today.

 

 

There is a TON of information. What I’m gleaning from it is clean up everything first before trying to supplement and then work with a functional doctor. Just like in the world of Benzo, we are all different and we all react differently.

 

Right now, I am not able to take methyl vitamins, either B12 or B9 (folate).

I do have some success with hydroxycobalamin (B12) and folinic acid, but I can’t take them every day.

 

This is such a mystery!

[[no...]]

in 2013 when i was undergoing a ton of diagnostics because doctor's still didn't believe i could possibly be suffering from benzo withdrawal, i was tested for the MTHFR mutation and turned out to be a compound heterozygous. my naturopath recommended a b-vit/folate supplement made by Thorne Research called methylguard. i could not tolerate it for a very, very long time. our systems for the most part are too sensitive for that kind of supplementation in the acute withdrawal phase. i found that staying away from fortified foods was helpful, and i truly felt cleaner eating lessened the severity of my symptoms. as my nervous system began to heal from the benzos. i was able to utilize the methylguard and also magnesium glycinate. i could tolerate the magnesium long before i could tolerate the methylguard. but now i am able to take both without any issue and i still try to eat as cleanly as possible. the interesting thing about the methylguard is there will be times when i am feeling "off" - and when i take them, it seems to help. so i do believe there are some very big issues at play for those of us who have compromised methylation due to the MTHFR mutation.

 

dave

[[Fl...]]

Dave, It’s really encouraging that you can now tolerate methyl B12 where before, you couldn’t. I am in complete agreement with you on the cleaning up of the diet. I think that is the first step!

[[jo...]]

Flip, I'm having trouble with all the info., so please help.

 

If my doctor ordered the "medical food" Foltanx, is that something that will help or hurt me right now? I don't want to proceed with adding ANYTHING to my diet/meds if the potential for progress isn't well-established.

 

Thanks in advance!

[[Ch...]]

Barbara,

 

You have two mutated genes? I think that’s homozygous but I could be wrong. I’m also not sure what the difference is between just “heterozygous” and “compound heterozygous.” I’m still new to all this and learning, but it’s a lot to take in. 

[[Fl...]]

Joantics - I looked Foltanx up because I had never heard of it. It’s a nutraceutical. Looks like it is methyl versions of folate(b9), B6 and B12. Looks like it is prescribed primarily to treat peripheral neuropathy.

 

I really don’t have any answers to this. You might be fine. You might notice nothing at all. You might get anxious. You might feel wonderful. Those are the three reactions people seem to have on these.

 

I’d say pick a day when it doesn’t matter much what’s going on and you don’t have to do a lot and give it a try. Maybe try a half dose? I am not a doctor and I can’t give medical advise, but if it were me, I’d try it.

 

Let us know how it works. We are all interested. !!

 

Champion and Barbara -

 

From what I understand, compound heterozygous means you have one 677 and one 1298 [might not be the right number.]? Two different genes have a mutation. So you have to figure out what to do for each and really need guidance.

 

Hetero means one gene snip is mutated.

Homo means both.

 

So much to take in. Let’s all keep researching and sharing what we learn.

 

[[Ch...]]

Ah, okay. I think I understand a little more. Thank you for the info, Flip! From what I understand by the paper I was given, I believe I have one bad gene being the 677. I’m trying some very low methylfolate for starters but I’m confused if I need to try B6 or any B vitamins along with it. I’m hoping it might possibly make my withdrawal a tiny bit easier if I supplement correctly.

 

I’ll share anything I find that might be helpful!

[[jo...]]

Thank you, again, Flip, and I'll be back to share with everyone.

[[Ba...]]

Champion,  yes I have TWO bad genes.

 

Am up for any info.  Should I not take a reg B complex bill?  Is there somethign I should take?

 

What a pain...

[[Fl...]]

Barbara, there are no simple answers here. We are all trying to figure it out and it looks like we all have a different variety of the mutation. My best advice is to start low and go slow, watching for symptoms as you go.

 

It's kind of like tapering except in reverse! 

[[Fl...]]

This looks like an interesting link for us. It seems to be a list of genetic markers in order.

 

https://ghr.nlm.nih.gov/gene

[[Ba...]]

Well I'm still tapering so don't know what to do.

 

Could I just take a regular B complex vite?  sheesh.  I don't want to muddy the waters more than they already are.

[[wa...]]

in 2013 when i was undergoing a ton of diagnostics because doctor's still didn't believe i could possibly be suffering from benzo withdrawal, i was tested for the MTHFR mutation and turned out to be a compound heterozygous. my naturopath recommended a b-vit/folate supplement made by Thorne Research called methylguard. i could not tolerate it for a very, very long time. our systems for the most part are too sensitive for that kind of supplementation in the acute withdrawal phase. i found that staying away from fortified foods was helpful, and i truly felt cleaner eating lessened the severity of my symptoms. as my nervous system began to heal from the benzos. i was able to utilize the methylguard and also magnesium glycinate. i could tolerate the magnesium long before i could tolerate the methylguard. but now i am able to take both without any issue and i still try to eat as cleanly as possible. the interesting thing about the methylguard is there will be times when i am feeling "off" - and when i take them, it seems to help. so i do believe there are some very big issues at play for those of us who have compromised methylation due to the MTHFR mutation.

 

dave

Thnx - I am compound heterozygous, too and need some guidance.  I can't afford the B12 shots since insurance stopped covering them but I may get a doc authorization for them.  I eat leafy greens now for the folate and avoid all fortified flour products.  It's a start for me.  I think I need to do more.  I just got the Dirty Genes book.  Overwhelmed but think this the missing link.  W

[Guest [Ru...]]

Flip,

 

Interesting thread! There is so much confusion around the MTFHR defect.

 

I run a small, holistic health practice, so perhaps I could add something. One of the most useful articles I've found on the defect is by Dr Lawrence Wilson: https://drlwilson.com/ARTICLES/FOLIC%20ACID%20DEFECTS.htm

 

It gets quite technical, as Dr Wilson uses hair-tissue mineral analysis for testing (hence the references to different 'patterns', oxidizer types, etc.), but the salient points are all under the blue heading 'Summary of what I have learned about MTFHR defects or copying errors'. We've seen success using this approach (including the dietary advice), and have found the TMG supplement by Solal to be very useful.

 

The summary simplifies matters a bit and takes the scary confusion aspect out of it all!

 

I hope this helps someone.

Lara

[[Fl...]]

Lara - This is very interesting and helpful. Looks like the site is in a transition and I couldn’t get to the place to order. I’ll try later.

 

I’m interested in your health practice. Do you do chelation for heavy metals? Do you have insight on how best to go about getting tested and then how best to detox. I’m understanding more and more that we all have heavy metal toxicity due to our increasingly polluted environment.

 

I read the whole article. I think the first thing I will implement is a backing off of obsession over supplementation and a greater focus on food. Greens for breakfast! 😆

 

Barbara - empower yourself first by avoiding folic acid and eating more greens. That may be enough. That may be all you can tolerate while tapering.

 

Wanna - I’m impressed thT you already have the book. Please share as you learn, ok? I watched Ben Lynch’s intro video on the recent summit leading up to the books release; he and his whole family have some type of mutation yet they supplement very little it seems. They rely primarily on cleaning up their diet, environment, etc, and being active. He said they sweat a minimum of twice a week in a sauna. He said “if you’re not sweating, you’re not detoxing”. 

 

Please let’s all keep sharing. That’s why I love this community. We empower each other!

❤️

Flip

[Guest [Ru...]]

Flip, thank you for being such a validating, warm and uplifting presence here!

 

Regarding chelation: I don't do chelation as most others define it, no. The main reason is that chelation forces/'claws' the metals out in a somewhat unnatural way, always taking a fair amount of good minerals out of the body, too. This can be dangerous, for compromised folks especially, as we're all deficient in vital minerals nowadays (mainly due to stress, soil depletion, etc.). Also, those who're familiar with hair-tissue mineral analysis (HTMA) will tell you that chelation simply does not go deeply enough to the root issues to get rid of all toxic metals. So, we don't do chelation, but look at the body as a holistic energy system, focusing on food and nutritional elements, liver support, gentle detox, etc. Then, when the body is ready, it will start excreting metals safely and in its own order.

 

I would recommend HTMA through one of Dr Wilson's practitioners, here: https://www.drlwilson.com/do%20hair%20analysis.htm

 

Alternatively, Brenda Cosentino, a Nutrional Therapy Consultant who cured herself from many serious ailments and came off multiple psych meds herself, is very good and also offers HTMA: http://realfoodrebel.com/

 

We all three have the same approach regarding testing for metals and getting rid of them gently and safely.

 

I think you're completely right on starting with food, and downing greens for breakfast (in which case you'd really like Brenda  )!

 

❤️ Lara

[[Ch...]]

Very interesting topic.... Thanks for the  posts.

[[Fl...]]

Excellent info Lara. I will refer to this many times as I go about testing. Thank you for your organization and your reasonable voice!

 

Hi Charlottepeachs and everyone else reading. Join in!

[[Fa...]]

Anybody in this thread still around??

[[Co...]]

yes