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MTHFR Gene

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Posted 4/22/2017 9:27 PM (GMT 0)
Due to high homocysteine and other things I for sure think I have the dreaded "difficulty detoxing" gene. which is MTHFR. I'm going to bring this up to my doctor the next time I see her.

Does anybody have this gene? if so what can you do to help it out?
Posted 4/22/2017 9:46 PM (GMT 0)
It depends - some are homozygous and others are heterozygous.

It affects the type of B vitamins you take (B12 - methyl vs cyano vs hydroxy vs adeno)
And a few other B's.

There is a site you can plug in your results and they will decipher.

Genetic Genie.

there may be other sites...sorry that's all I know...
Posted 4/22/2017 10:07 PM (GMT 0)
I don't seen to detox that well either. I asked my doctor about testing for it. He said he would do it, but he also said it really wouldn't change anything we've been doing, so we haven't done the testing.
Posted 4/22/2017 11:47 PM (GMT 0)
I did the testing, and I have the MTHFR along with a few other issues relating to phase 2 detoxing. I should not take any supplements with folic acid (Or folate). I also need to avoid methyl B12 and take hydroxo B viatamins. Anything from food is fine.

I basically do as many detox therapies as I can for into a day, and I do them diligently... but I think that goes for all of us treating lyme. Detox is so vital.

Essentially, just have to show restraint and go slowly. I am doing really, really well overall. But as much as I want to speed thru the process, it's more harmful to do so cause my body won't keep up.
Posted 4/23/2017 12:08 AM (GMT 0)
Hi Tick41 -

There are several MTHFR genes - the M677T and A129C are the most common. A heterozygous result for each would mean roughly 30% reduction in that function; a homozygous result suggests roughly 60% reduction. There are other mutations that support detoxing and methylation - this can be a bit of a pandora's box and open-ended quest, but the initial info you find can be pretty helpful.

You can have a blood test to look for either. I think you'll get more bang for your buck if you have your genetic makeup done. Look on www.23andme.com for cost ($199?), takes a couple weeks - they send you a kit, you spit and ship and they provide you your results.

And can also give you a data package that you can plug into programs on other websites that will spit out even more results. www.Livewello.com is a good one (the best ones cost a little money).

Or… you could do what a lot of us do who have them and see if it helps.

-p

Post Edited (Pirouette) : 4/22/2017 6:11:10 PM (GMT-6)

Posted 4/23/2017 1:07 AM (GMT 0)
It doesn't have to be just the MTHFR defects that can cause issues.

MTR/MTRR defects can also be culprits, and of course, there's more. There's always more.

You could talk to your doctor about testing with 23andme.

If you do have a defect that matters, the practical differences could be, for example:

  • you might need to avoid anything with folic acid added as fortification - this means no more wheat flour products for the most part
  • you might need to really eat up your leafy greens and your blueberries as folate sources
  • you might need to supplement with folinic acid+B2, or methylfolate, or both (we do both)
  • you might want to look at other micronutrients: especially manganese, molybdenum, selenium and lithium orotate (very lose dose of that last one)
  • watch your potassium and magnesium intake - you'll probably need more.

If you supplement with methylfolate, you should add in some B12 as well so your body can use the folate - the usual suggestion is to start with a crumb of sublingual methylB12 and see if you get a positive response. If you are not able to convert between different forms of B12, taking hydroxy or cyanoB12 won't help at all. People in this situation need both adenosylB12 and methylB12
Posted 4/23/2017 4:55 AM (GMT 0)
There are a whole bunch of possible gene defects for liver phase II detox pathway. These are just as or even more important than the popular MTHFR for people on meds that are tough on the liver.

D-Limonene was the only detoxer I felt better from and it has a direct impact on liver phase II detox, but its very unpopular for some reason. Sam-e is also good for liver phase II , BUT it does change your brain chemical balance; I hated that stuff, some might love it.

B12 is weird, we've had discussions about this. Personally, I've never felt anything from B12 and I've experimented with all the types listed in this thread. I have been using Pure Encapsulations multi vit with B12 Adeno and hydro. I dont have MTHFR but this multi vit has Metafolin Folate.......whatever that is.
Posted 4/23/2017 11:35 AM (GMT 0)
Metafolin Folate is the bees knees in methylfolate. We try for that one. There's also a quatrifolic methylfolate, which is chemically similar, but it's not absorbed quite as well - about 70% as effective as metafolin folate.

If you don't have MTHFR defects but still need some folate supplements, folinic acid with b2 is slightly better as it flows through to more processes in our metabolisms.
Posted 4/23/2017 3:43 PM (GMT 0)
I have not been tested, but do have a lot of difficulty with detoxing well, so I choose to try the methyl B's on my own (NOT recommended!), and it's been of help to me. I can tell that my body can detox easier with the methylated versions of those vitamins. Hopefully one day I'll get off my bum and actually have the test done, just to see what issues I do have.
Posted 4/23/2017 3:54 PM (GMT 0)
Interesting conversation. I have a few questions. It sounds like 23 & me is the go to test for mthfr but:

1. Is the labcorp / quest test of any use for this?

2. Can someone who has tested positive for mthfr and made the supplement / dietary adjustments tell me specifically in what ways, and how much it has helped you better tolerate treatment?

I've paid out of pocket for a number of tests from specialty labs and keep getting normal results. That's reassuring in a way I suppose, I'm the sickest healthy person in the world.
Posted 4/23/2017 4:14 PM (GMT 0)
What kind of dr do you see for help navigating the genetic methylation mutations? I am asking for a friend who's son has some significant birth defects and she's just starting down the path of sorting through this stuff. I know, not Lyme related. I suggested she find as ND well versed in kids with autism as they seem to be the most knowledgable about MTHFR stuff. I know we all end up doing our own research mostly but it sure would be nice to have some real help figuring it out.
Posted 4/23/2017 4:18 PM (GMT 0)
Just so you know, the Doctors won't tell you, but it's trial and error because each person is unique and they have no idea what genes are expressing themselves. I had 3 different doctors address this 3 different ways, two made me very sick. I have a lot of mutations, and the most important for me was MTRR, which is an inability to recycle B-12.

After 2 years of tweaking, I finally got relief by weekly injections of methyl-b/hydroxy-b/folinic acid/B-6. I also take Homocysteine Factors and MSM by Pure Encapsulations to aid as co-factors. Beware! When you restart methylation, its like a really bad herx. I was so toxic I couldn't get out of bed. The doctor didn't know about detoxing...(that drives me crazy). I'm only now (2 years into treatment) feeling quite normal (yea). I would go slow, make sure you are using binders and take some anti-oxidants!!

I also start the day with a glass of water and electrolytes, per Ben Lynch MTHFR.com.

I got mine done through Labcorp, not CPL
Posted 4/23/2017 4:29 PM (GMT 0)

BJD55 said...
1. Is the labcorp / quest test of any use for this?
2. Can someone who has tested positive for mthfr and made the supplement / dietary adjustments tell me specifically in what ways, and how much it has helped you better tolerate treatment?
I've paid out of pocket for a number of tests from specialty labs and keep getting normal results. That's reassuring in a way I suppose, I'm the sickest healthy person in the world.

Regular labs CAN test for specific mutations (M677T, A129C) but they don't do broad testing—they have to be told what to look for and I'm not sure what other capabilities they have. I can't answer #2 but I know others here have had good results. You might also want to do a search for specific key words in the subject title. Not sure what "specialty labs" you're referencing but if you're getting normal results from labs for these common mutations, that's a good start but again, they're probably not looking across the board. There are so many possible mutations.

Totally agree w/ Cre3ativegirl - the many possibilities AND the combination of mutations make all the difference. I have a complexity that I haven't been able to solve yet… and it's taking too much time from things that are a little more important right now. But I do know others here who have had success.

ChickNorris -
I would start w/ Amy Yasko's web site. She specializes in autism for kids but I think it's a helpful starting point.

-p
Posted 4/23/2017 4:40 PM (GMT 0)
Agree with everything here... I still haven't solved my puzzle yet, and my report of which snp were off was 40-50 pages. It's utterly complex. For me switching to no folic acid/folate was huge. I was not able to process methyl b12, so the switch to hydroxo made sense... my issues were 3 to 4 other genes beyond simply MTHFR and I am happy I found a doc who totally understands it all and could unwind some things to help.
Posted 4/23/2017 5:21 PM (GMT 0)
I also tested MTHFR. jUst thinking out loud, I am curious of absorption in all herbs and minerals and supplements. So then how well does all the protocol for Lyme work if absorption is lacking?
Posted 4/23/2017 5:26 PM (GMT 0)
Well, leaky gut is a huge issue with absorption of meds/herbs/nutrients. It may have a lot to do with why we all need different doses of meds too.

But that's different than the MTHFR type of issues - that directly impacts our ability to detox well.
Posted 4/23/2017 6:48 PM (GMT 0)
Gene Dr list right here: mthfr.net/mthfr-resources/

no, try this : mthfr.net/mthfr-resources/ well they screwed up the site, click on some of the blue stuff and you'll get there.

***Folic/ folate question*** Can those of you describe the difference / symptoms/ feeling from getting this corrected? I dont have double copies of the MTHFR genes. There is a small handfull of related ones to MTHFR, I had single copies of.

Side note: Its hard to do this stuff if you still have lyme going on, which, I dont think I have anymore. I tried treating genes for a while, even with a Dr who gets this stuff its very difficult if you have many "reds" on your gene report. Mine was also 45-50 pages on the Sterling app from mthfr resources for $50.

Hopefully some day, some Dr will make sense of this and make a "flowchart" at a suggested starting point for conquering gene issues.

Post Edited (astroman) : 4/23/2017 12:54:25 PM (GMT-6)

Posted 4/24/2017 10:02 AM (GMT 0)

cr3ativegirl said...
I have a lot of mutations, and the most important for me was MTRR, which is an inability to recycle B-12.

I've got 11 mutations in the entire pathway and all of the bad ones. Once I got my microbiome back to where it needed to be, I could function normally with a controlled diet. We are all different so regaining our normal microbiome is more difficult for some.
Posted 4/24/2017 3:27 PM (GMT 0)
"***Folic/ folate question*** Can those of you describe the difference / symptoms/ feeling from getting this corrected? I dont have double copies of the MTHFR genes. There is a small handfull of related ones to MTHFR, I had single copies of."

Astro, for me, it was just the ability to detox easier. I could tell that I was feeling better with less detoxing - not that I lowered it, only that what I was doing was working better, so I don't struggle as much with detoxing enough.
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