HealingWell
Search Close Search
☰

MTHFR mutations

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/4/2017 5:14 PM (GMT -5)
My doctor tested me for The MTHFR Genetic Mutation and it came back positive. I guess 30% of the population has it. She said it makes Lyme more difficult to treat. Does anyone know anything about this genetic mutation?
Posted 4/4/2017 5:32 PM (GMT -5)
It makes it slower to detox, so I think we have to concentrate on that aspect more and possibly use binders in order to help it along. I have MTHFR and a couple of other important mutations in my phase 2 detoxification... I had genetics checked 2 years ago. Now, I take a couple of different binders and make sure i check my liver/kidney function on blood work. I am very diligent about using many detox methods like FIR sauna, epsom baths, dry brushing, ACV, magnesium and so on. It's just part of my life routine by now.

I also can't do folate or methyl B12... so I adjusted to hydroxo B12 and take a vitamin w/out folate now.

I am doing great, and I feel as if I have progressed to 75-80% well. I just had to understand it's not impossible, just slower.
Posted 4/4/2017 6:36 PM (GMT -5)
Yeah that's why I thought! Harder to detox, yay! Glad that you're 75-80% better! I know I'll get there too! I had Hep C for over 35 years, and I tried sooooooooo many treatments, even chemo; finally was cured in May of 2015 with the brand new breakthrough meds! I know I can beat this too!
Posted 4/4/2017 6:46 PM (GMT -5)
3humpedcamel, could you please tell me where you get your vitamin without folate.

Patty
Posted 4/4/2017 10:03 PM (GMT -5)
This one. It's got some folate in methyl form which doc said was fine and "process-able"

/www.protherainc.com/prod/proddetail.asp?id=VTPC

I also have done this one... folate free.

/www.drfuhrman.com/shop/products/56/womens-daily-formula-d3
Posted 4/4/2017 10:23 PM (GMT -5)
it's good to do your 23andme and get the facts around your detox pathway, MTHFR or COMT etc.

I also found out I have MTHFR and take hydroxo. I did this on my own, my docs are almost USELESS.

once you have your data you go to geneticgenie or nutrahacker and get nice reports that detail your mutations and what supplements to take and which ones to avoid.
Posted 4/5/2017 1:51 AM (GMT -5)
I agree, the detoxification pathways aren't just one problem, one solution, but a series of interactions. Much like the LYME itself!

It also very much depends on if you are homozygous (double mutation) or hetrozygous (one mutation out of the pair) for each gene. Hetrozygous can mean that the gene is functioning at 60-70 % efficiency, while homozygous can mean it is as little as 10-20 %. This makes a big difference in how ypu need to address it as over supplementation can be as bad as none, depending on your situation.

The CBS mutation, MTR and MMTR as well as others can play a significant role in how the pieces of the jigsaw fit together. If you have those results it would be beneficial to you.

For example if you have the CBS mutation it might be wise to look at that first, otherwise treating for the MTHFR can mean a temporary fix but then toxins building up in another part of the detox pathway and causing other problems.

A useful website is heartfixer.com (sorry I can't link it off my tablet) although it is not an easy read it does discuss the interactions, problems and some solutions. Or if you have questions I will do my best to answer them without the mind bending sciency jargon, lol!!!
Posted 4/6/2017 1:04 PM (GMT -5)
Silly Sheep... So this website is good if you know what mutations you have correct? and there is no way to know unless you get the genetic testing done?

Also, have you had this done? how much is this going to help someone? what benefits would I see if I get the genetic testing done, I figure out what mutations I have and add in supplements to help my body?

It seems that if someone is living with a mutation that fixing it would dramatically improve their quality of life. is this true?
Posted 4/6/2017 5:00 PM (GMT -5)
What addressing the mutations has done for me is make it a lot easier for me to detox and so I can push my treatments a little harder/faster.

I have not been tested (NOT recommended!!!!), but I could see by reading these posts that I definitely had the same issues as were being talked about for those that did have the mutations. I slowly added in methyl B-12 and methyl folate and have done much better since then - so for me, they have most definitely improved my quality of life - and will continue to do so even after I heal these infections.
Posted 4/6/2017 6:54 PM (GMT -5)
Hi - I don't have LD (my daughter does), but I am homozygous for MTHFR 1298C. I had testing done through 23andme, because there is a history of depression and anxiety in my family, which is connected to the mutation. The most important thing to know is that your body cannot process folic acid as well, and convert it into folate; therefore you need to take folate (called L-methylfolate or just folate). There are many methylfolate supplements on Amazon, or in health food stores, GNC, etc. Also, those with MTHFR are often low on B vitamins, so I take B supps, esp B6 & B12.

I wouldn't say that knowing this and supplementing has dramatically improved my QOL, but my anxiety is certainly better since I started supplementing.

My daughter is at least heterozygous for MTHFR (since would get one copy from me), and I will probably have her supplement with folate in addition to all of the detox strategies which are the same for both MTHFR and LD.

Traveler, curious as to why you don't recommend being tested? Anything having to do with future possible changes in pre-existing conditions?
Posted 4/6/2017 8:17 PM (GMT -5)
I would also caution that just because your have a gene polymorphism doesn't mean is active. It's very trial and error from my own experience. You could have a CBS gene mutation from your results, but it may not be expressing itself, for example.
Posted 4/6/2017 8:35 PM (GMT -5)
It seems like this MTHFR mutation is the only valuable information from the genetics testing. It seems like there should be more we can get out of that kind of data to help our bodies... maybe the science just isn't there yet.

Either way, thank you. I have the methyl folate and its been 3 days and I think I seem a little better. I have also started other new things recently so we will see what sticks. thanks.
Posted 4/9/2017 6:30 AM (GMT -5)
Sorry for the late reply MAF!

Just to let you know that, for me personally, it was a breakthrough in treatment. Before testing I had to keep stopping and restarting treatment as the herxing (particularly brain herxing) was way too much. After months I was getting nowhere at all, let alone fast. Personally it changed my life since I was finally able to stay in treatment. I am now well on the road to being 100% better smile

I completely agree with cr3ative girl though - I got the test done off my bat more out of curiosity - someone suggested it since I just couldn't detox nomatter what I did - and wasn't expecting anything useful. They were right!! The most useful info for me was not only the mthfr but also the CBS mutation too. Like I say, it's more of a jigsaw. It is another tool if you are sruggling to get well, but a very individual process.

Yes, the website is very interesting, especially if you have specific mutations that you are looking to supplement for.

Hope that helps!
Posted 4/9/2017 9:04 AM (GMT -5)
I too have a few homozygous mutations.

MTRR A66G ++
MAO A R297R ++
CBS C699T ++

Also hetrozygous:

MTHFR A1298C +/-

I just got these results last week.

Is there anything in particular I should be adding/doing about it?
Posted 4/9/2017 10:17 AM (GMT -5)

UCSDMom said...

Traveler, curious as to why you don't recommend being tested? Anything having to do with future possible changes in pre-existing conditions?

I said that I was not tested and that's not recommended - I just didn't test, as I simply didn't have the money at that point in time - but knew that I really needed help with detoxing. I started really studying the issues that people have with these mutations and what the 'symptoms' were when they interfered with detoxing, and realized that I did fit that - so I took a jump off a bridge and tried it. It worked for me, but I do NOT recommend for others to follow me off that bridge!

So sorry for any confusion!!!
Posted 4/9/2017 10:42 AM (GMT -5)

Traveler said...

UCSDMom said...

Traveler, curious as to why you don't recommend being tested? Anything having to do with future possible changes in pre-existing conditions?

I said that I was not tested and that's not recommended - I just didn't test, as I simply didn't have the money at that point in time - but knew that I really needed help with detoxing. I started really studying the issues that people have with these mutations and what the 'symptoms' were when they interfered with detoxing, and realized that I did fit that - so I took a jump off a bridge and tried it. It worked for me, but I do NOT recommend for others to follow me off that bridge!

So sorry for any confusion!!!

What specific treatment did you use for the mutations?
Posted 4/9/2017 12:10 PM (GMT -5)
I just started off with assuming I had the basic MTHFR mutation, as I can't use cyano type of B-12 - it actually makes me so tired that I have to nap for 1 -2 hours about 1 hour after I would take it. That was my first clue, and since I had already been using methyl B-12, it was easy to add in a very small dose of methyl folate as well.

I felt like I started to detox a bit better, but since I haven't had any testing and there are no doctors near me that I trust (they can't even diagnose low thyroid!), I was cautious and stayed at that dose - until someone on here posted the amount of methylfolate they were using and their doc told them it was the lowest amount to use - which was roughly double what I was taking. So I carefully, cautiously raised my dose until I reached that amount (now taking 2 mgs), and I detox much easier now.

But, again, I would not encourage anyone to follow me in this - testing is definitely the way to go, as a person can 'over methylate' as well. Here are two really good articles on it:
mthfr.net/overmethylation-and-undermethylation-case-study/2012/06/27/

mthfr.net/methylfolate-side-effects/2012/03/01/
Posted 4/9/2017 6:30 PM (GMT -5)

Mustard Seed said...
I too have a few homozygous mutations.

MTRR A66G ++
MAO A R297R ++
CBS C699T ++

Also hetrozygous:

MTHFR A1298C +/-

I just got these results last week.

Is there anything in particular I should be adding/doing about it?

From what I've read, your biggest issue is MTRR. It affects your body's ability to convert one form of B12 to another. This diagram shows it in one of those folate cycle type diagrams.

A very brief explanation of MTRR and all its variations is at forums.phoenixrising.me/index.php?threads/interesting-mtrr-variations.24551/

The effect is a slow-down, not a total stop. High blood B12 levels don't mean it isn't an issue (in fact, maybe all that B12 is swimming around, unused).

It means that, if you supplement B12, you might want to use methylB12 and perhaps also adenosylB12. The cheap stuff - cyanoB12 - is likely to be useless. You might also find that hydroxyB12 is also useless.

You should also check your B2 levels because B2 really matters here. The easy way to do this is to swallow 25 mg of B2 (we split a 100mg pill) and see how long it takes to pee out the excess. When started down that path, it took weeks of supplementation before the urine changed colour. Normal is less than an hour.

The other genes are nothing to worry about.

MTHFR is heterozygous, so no real impact there according to experts.

The MAO and CBS genes are also not an issue. Here's a good summary from another forum:

Valentijn of Phoenix Rising said...

In the case of MAOA R297R ... will almost never have an impact. ...

There are no problematic up-regulations of the CBS gene, unless you have three copies of it (Downs Syndrome) or half of it has been lopped off in an experiment (mutant lab yeast). CBS C699T "+/+" has been found to be mildly beneficial in the published research, with no evidence of even the possibility of harm ever shown: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2366099

about us: we spent a year on B12, B2 and folate and other basics before the mum-diagnosis of Bartonella (eventually confirmed by a doctor).

Post Edited (ccc-better) : 4/9/2017 5:34:17 PM (GMT-6)

✚ New Topic ✚ Reply