Making sense of MTHFR
 

I did genetic testing about 7 years ago but all I can find on the results relating to MTHFR is this:

We evaluated the following markers
Gene: MTHFR
Marker: rs1801133
Your Genotype: T/T

Does it mean anything?

I also just noticed I am a carrier of Galactosemia. Never heard of it.

That's "MTHFR C677T", and you have a double whammy on it (two bad copies). If you just Google that complete term, you'll find a lot written about it.

This page does a good job explaining it in relatively simple English, but I can't speak to the accuracy of what it says.

http://holisticprimarycare.net/topic...disease-puzzle

Thanks for replying. So, what should I be doing or what can I do?

I can't answer that. I'm just currently doing as much reading and research as I can based on all my methylation mutations.

Ok, I understand. Well thanks for the link too.

That link is excellent...I am going to
Put it in the B12 thread later today.

Thank you janieg for finding it and
Sharing it here.

I did some reading about MTHFR. On SNPedia (excellent website for checking individual DNA variations by the way http://www.snpedia.com), Rs1801133 (C667T) is categorized as a Magnitude 3 ("Probably worth your time") on a scale of 0-10 however, I do believe based on my result and what it can potentially cause, that it very well may be the cause for my idiopathic PN.

Here is where I am stuck. I then went to MTHFR.net, where went down the referral list of practitioners in my area that specialize in MTHFR and as I check the website of each, I find that many are anti-aging "wellness experts" that charge annual fees up to $3000. I am in good financial shape, I can afford it but I am also a wise person and red flags go up for me when I see very little about MTHFR buried in an abundance of information on botox and juvederm injections to appear more youthful.

I've got the youthful part down, just need a real medical professional to talk to about MTHFR and how it relates to peripheral neuropathy. :mad:

I believe you can do quite a bit for yourself. Then if you need further help you could consider a specialist.

The MTHFR site allows questions. You can ask any you want there.

The heart of the issue is the methyl failure. So using methylB12 and methylfolate (in moderation), is a good start.

People who have B12 failures get nerve damage... when severe it is called combined degeneration of the spinal cord. I believe the peripheral effects are early on and as it progresses you get motor failure, blindness, dementia, and death.

We are only early on in the knowledge base of methylation failure. Even those specialist would be hampered by lack of knowledge. What is interesting from my point of view, the incidence of this has gone from 10% a decade ago, to up to 30-40% today. As research expands these numbers change.

Thank you Mrs. D. It is exactly what I am looking for, a specialist, not an antiaging doctor who wants to charge me an annual package cost for hormone replacement when I don't have a deficiency and Botox injections when I don't need to look younger. I don't need diet advice either as I've already got that covered.

I was prescribed Metanx two years ago but it has not helped. One of the supplements I take now is Pure Encapsulations B12 Folate with Metafolin and L-5-MTHF. I just started that but what I have not found is proper dosage for helping with MTHFR.

You can call their office to see they'll see you for just the MTHFR consult. A half hour to an hour consult should be enough time. They most likely don't take insurance and charge from 250 -300/hour.

Also consider doing a phone consult with someone not in your area. Livewello also takes 23&me raw data and spits out report. They had a small list of doctors and one, Dr. Nancy Mullan does do phone consults.

https://livewello.com/practitioner

Beatle: I seem to recall a post --- was it from you?-- about previous fluoroquinolone use?

If that is correct, then you have more than one thing going on, and the MTHFR is only part of the PN issue.

Interesting. I am compound heterozygous. I am not really sure how this affects health.

If you cannot methylate properly, you will become very low in active B12 and folate. Methylation reactions also make and balance neurotransmitters and do many other things. You can look that up on Google.

Mrs. D, that was me. I was on Cipro for six months (that's right, six months) but it was several years ago. I did not experience any neurological symptoms at that time though so I don't know what part, if any, it had in where I am today (I was dx'd with IPN August 2012).

I have discussed the Cipro history with my current doctor and as with most potential causes, his response is that we will never know so we should not spend too much time thinking about them as it would not change our course of action (treating symptoms). He tries to understand and be supportive which I think can be difficult for someone who has not experienced NP.

As my PN progresses, it becomes increasingly more challenging to enjoy my life so I do spend a lot of time researching, looking for potential causes, trying to figure out how I can halt the progression. What is intriguing about MTHFR is that I have those two bad mutations of a gene that many studies point to neurodegenerative diseases among other things. Sounds like a potential cause of IPN to me.

I think my doctor views me as experimental and he would be right. But I have to be this way. Too little is known about PN, and not enough is being done. I can't give up.

I think we all present an "experiment" to our doctors.

Mine in particular seems to groove on it... first: was my malrotation of the GI tract that she discovered...very rare.
second: was my angioedema diagnosis following the lisinopril reaction, and thirdly...my lisinopril reaction which she said was her first patient to have one like that! 40 yr practice.. and I gave her 3 rare problems during that!

The best doctors are those that rise to the occasion and actually enjoy the challenge.

I am also intrigued by radiation and nano pollution causing nerve damage. I saw a science show that demonstrated all the particles that go thru our bodies daily... it is sobering. If they hit a strand of DNA and damage it, then you take a DNA damaging drug, then inhale the pollution in our air that damage further...well...that all adds up.

I am getting to a point now, with my Candida cleanse which is painless and really working well...that soon I will be suggesting it to those here who seem stuck with that idiopathic diagnosis.
Taking that Cipro for 6months would have really killed off the beneficial organisms in your gut... Perhaps you should try to replace them now? And get rid of the Candida overgrowth that is sending out toxins into your blood all day long!

Candida Support by NOW... and using Kefir or a good probiotic with many strains staggered with it , to see if that helps. I really became so ill with this broken molar before Xmas, and so I started a Candida cleanse on advice from a friend, and it is working already.

I am going to do a good search in a few days for really complete formulas for probiotics. They tend to be expensive, much more so than the NOW product, but they are worth a try I think.

I found this interesting article on folate and folic acid, along with hundreds of responses.

http://chriskresser.com/folate-vs-folic-acid

Beatle, look for a response by "ccarr" who shares with you a double-whammy on C677T.

Hi Janie, just wanted to thank you for posting the link to this article. I am currently researching the pros and cons of supplementing with methylfolate, and I especially found the comments at the end of the article to be quite interesting.

The author mentions that most multivitamins still contain folic acid rather than folate, which I’ve found to be mostly true. I’m having difficulty finding one that has folate without also containing high dosages of other nutrients that I don’t particularly want. If I move forward with this, I will probably have to add methylfolate as an individual supplement.

It sounds like progress is being made with MTHFR in some areas...

Testing DNA to find best meds to fight depression

http://www.chicagotribune.com/lifest...827-story.html

"Most significantly, testing showed Mandy had a single mutation in the MTHFR enzyme critical in metabolizing folate found in foods or vitamin supplements. Researchers showed in the 1960s that folate deficiency could trigger depression. Genetic testing can reveal enzyme mutations linked to commonly consumed drugs and vitamins.

Rosenbloom gave Mandy a prescription form of processed folate, l-methylfolate, that can cross the blood-brain barrier and switch on enzymes that would help her metabolize antidepression medicines such as Wellbutrin."