For those struggling with MTHFR supplements

[LNN]

A few people have posted or PMd recently about not doing well on methylfolate. Sometimes, it's been a dose issue and dropping the dose has helped. But as I kill time waiting for my 23andMe genetic test results, I'm puttering around the methylation sites and I found this article:

http://www.mthfrsupport.com/1/archives/05-2012/1.html

Read the whole thing if this applies to you, but here are the highlights:

There are two genes that I want to talk about that can make a heavy impact on your health that need to be addressed before an MTHFR protocol is started. CBS and SUOX.

 

What is CBS and why does it need to be taken care of before an MTHFR protocol?

CBS is Cystathionine-β-synthase. CBS converts homocysteine into cystathionine. This pathway removes sulfur containing amino acids. When it is shut off there can be trouble. ...

 

There are supplements out there that doctors will give to individual with MTHFR to help raise their glutathione which can actually cause a methylation trap. When a patient starts glutathione boosting supplements such as MSM, TMG, NAC and silymarin and they start complaining about negative side effects, this should raise a red flag that there could possibly be a CBS enzyme deficiency.

A wonderful source of information out there is heartfixer. It is basically a step by step manual on how to address this situation and clear out the sulfur in someone with CBS before starting an MTHFR protocol. http://www.heartfixer.com/AMRI-Nutrigenomics.htm#CBS

It is always best to avoid processed foods when there is a CBS mutation. Most processed foods contain sulfites which are bad for most and especially bad if you have a CBS enzyme deficiency.

Findings to be associated with CBS are low dopamine, low seratonin, cardiovascular risks and multiple chemical sensitivity. And for all of you out there with Hashimoto's thyroiditis, it can cause low ATP production.

Vitamin B6 in the P5P form also interferes with people who have CBS SNPs. So for those of you out there taking P5P as part of your MTHFR protocol, know that if you have certain CBS mutations, vitamin B6 in the P5P form can possibly have a negative effect on you and might have to be given in lower doses.

CBS and ammonia is another key factor in people with CBS mutations. People with CBS have trouble breaking down ammonia.

 

There is still much more for me to learn but one thing I do know, is that CBS must be addressed before an MTHFR, MTRR and/or and MTR protocol can be properly started.

 

I am in contact with many doctors who know about CBS and SUOX who get an overflow of patients with negative side effects to an MTHFR protocol because their doctor did not address CBS and SUOX mutations first.

 

Turning to the SUOX enzyme deficiency. What is SUOX? What can be done if you are diagnosed with a SUOX SNP and what can be done to clear up the SUOX pathway before starting an MTHFR protocol?

 

SUOX I even know less about but I will explain what I know. SUOX stands for sulfite oxidase. People with SOUX mutations are normally molybdenum deficient.

With SUOX sulfite has a problem converting into sulfate. I know that I have seen some positive results with molybdenum (ammonia free), boron and I have just started supplementing with GABA. Also the COQ10 and NADH/d ribose seem to help me somewhat. I have been reading much of Dr. Amy Yasko's absolutely incredible work on methylation and will soon be adding Carnitine to my protocol. This supplementation seems to work best plus a few others.

 

Now that you see sulfur must be avoided until CBS and SUOX are taken care of, this will give you an understanding as to why some people react negatively toward a basic MTHFR protocol. Getting the trans sulfuration pathways clearly is a must before any MTHFR protocol can be started.

 

I encourage anyone with SNPs on the methylation pathway to study the works of doctors and researchers out there like Amy Yasko, Dr. Ben Lynch and Rich Van Konynenburg that are understanding methylation is not only about MTHFR. There are many other factors involved. That is what makes us all different. We are all unique individuals.

 

I'm sure there are other mutations that also need to be addressed. MTHFR is just one of many. When I first came across it, it seemed a big one for my personal family history (lots of heart disease). It was easy to test at any commercial lab, and I could afford it. Yasko's panel at $450 for two kids was out of reach. But then 23andMe dropped it's price to $99 in december. So I took the plunge and now wait for results. I'm sure my head will be spinning in a few weeks. For my DD, treating MTHFR has been huge. But for those who haven't seen that "wow" they were hoping for, maybe the above will give you some things to look into. Maybe it isn't that treating MTHFR isn't helping but rather that there are other road blocks (even beyond the ones mentioned) that are in the way.

 

Not everything is related to methylation. We spent two years treating DD for infections first. Pandas is still about strep, Pans is still about eradicating infection and squashing inflammation. But then some kids still can't seem to get to 100% and for those kids, sometimes this is the place to find additional answers. So I pass it along for whatever help it might be.

 

For those still scratching their heads about the whole methylation thing, I also found this site with a few videos and articles that might be helpful: http://www.drjessarmine.com/category/methylation/ This guy is a chiropractor and RN who helps moderate the Facebook MTHFR Support page. Don't know anything about him or his practice or knowledge. I just pass it along fyi...

[Hopeny]

LLM I was just browsing through DD's labs and I see that she had low homocystein. what would you see as the implication of that in regards to methylation, 677T mutation, etc...?

[MomtoJake]

Yes LLM!! My DS has one CBS mutation and am in the process of finding out his SOUX results, since the Genetics Genie does not pull that out. However, the clinician I am working with said we have to start with the CBS issue first. He suggested we stop NAC since it has sulfur, avoid foods high in sulfur and start Yucca Root and Molybdenum. I pulled out my son's labs from a DAN doc years ago and sure enough my DS had a severe Molybdenum deficiency that the previous doctor did not comment on nor address. Have not started the supplements yet because he wanted a stool test first to get a clear picture of any gut issues first, so we are doing that. He said ABSOLUTELY NO METHYLFOLATE or any other methyl donors right now! we had some early success in my son's autism treatment with Methyl donors, however we went too fast without addressing these other issues first. Puzzle pieces falling into place here!

[LNN]

Yeah- bummed that 23andMe doesn't check SUOX. Hoping we can skip it, as DD can take bactrim and other sulfur without issue. Sounds like you have a good practitioner - they;re hard to find!

 

Hope - when did you check the homocysteine? We checked back when I was overdosing DD on methylfolate (without also giving B12) and it was low. But in hindsight, that makes sense - I was putting in too many methyl donors and it was recycling too much in the methylation cycle, not leaving enough to produce homocysteine and therefore not enough glutathione. So in her case, too much methylfolate = not enough homocysteine. But haven't tested it since we settled into our current dose.

 

If this isn't your case, you may want to post the question on the "MTHFR Support" facebook page. Those guys know way more than I ever could about this stuff.

[Hopeny]

Llm the testing was done prior to starting any supps, dd was only taking vit d, augmentin, biaxin and culturelle at that time. I'll post on the fb page and if I find out something helpful

[JAG10]

A sulpha allergy like in Bactrum and other medications is different than sulphur. Not sure how this relates to SUOX.

I could be completely off base here, but I think sulpha is synthetic, but sulphur occurs naturally in foods.

 

 

[LNN]

Have to confess I haven't paid too much attention on the sulpha/sulphur/sulfite stuff like I should. I've been avoiding that aspect. The rest of the methylation stuff has had all my attention. But I suppose I should go figure it out...Thanks for the reminder...

[jojos_mom]

Thank you, LLM! I totally agree. Other SNPs may need to be addressed. I actually ordered the 23andme genetic test and it came in the mail today.

I am looking forward to expanding my family's path to healing! :-)

[MamaOnAMission]

Who do I order this test from? Thank You

[LNN]

Who do I order this test from? Thank You

 

You can order from here https://www.23andme.com/ for $99 - no doctor's signature required. Test results are now taking 6-8 weeks to get back because they've been overwhelmed with orders since lowering their price. But be aware - this company will only give you raw data that is difficult to interpret. It will not come with a doctor's guidance on what to do with the results. For anyone not inclined to do heavy technical work, you can head over to the facebook page called MTHFR Support and the moderator will interpret your results for you for $50 and give you a phone consult. There are a few practitioners (chiropractor, nutritionist and physical therapist) who also do phone consults to guide you, but I don't know what they charge or how satisfied people are with them. I don't have any direct experience with any of them.