Methylation, Detox and MTHFR

I am happy to say that I am a new poster here, and that I am very impressed with the knowledge and kindness from the other members !!

Like so many others, I am trying to unravel this very complicated health issue

I am wondering if anyone else is familiar with, or, has delved into methylation and their own MTHFR gene status ...

From what I understand, methylation and genetics play an enormous role in the body's ability to detox, in fighting infection, sluggish lymph and blood circulation, etc

Has anyone else had the MTHFR gene test ?

Or have you done the 23-and-me genetic test ?

I have the double A1298C MTHFR, which, when I read or hear about the effects, plays directly into why treating lyme has been so difficult for me ...

All these things are very treatable, but the order in which they are done in extremely important ...

Thanks !!!!!!!!!!!

Hi GP, thanks for the welcome !

I had the 23 and me test done over the summer, and there are two results relating to VDR, which from my understanding are vitamin D receptors ...

I had a +/- on both, which isn't terrible, however, it does play into the process of vitamin D - I have tested as low a 6 for vitamin D ( 4 years ago ), and now have it into the low/normal range ...

But taking vitamin D can be very difficult for me, as is taking some of the other things I need ( B12, Methylfolate, zinc )

The MTHFR doc I spoke with said it is very common for people who have been thru the ongoing illnesses to have difficult times when beginning a methylation protocol - he likened it to the episode of I LOVE LUCY where Lucy is working on the assembly line with the chocolates - she starts eating a few, and it's good, but then things get going too fast too soon LOL

Learning about this has shown me how different everyone is, and how any form of treatment needs to be individualized - that goes for lyme too, as now, I believe "lyme disease" can be a much different thing than infection with the borellia bacteria

I am a1298c +/-. I don't know how this affects my illness and treatment.

I have the MTHFR 677C mutation, for get the exact. I have to take methyl b-12 and methyl folate, which at first it made me sick so I had to start slow. Don't really know how it affects the Lyme. But I do know I had leg aches all my childhood. But Lyme for 15 yrs before diagnosed.

Welcome Tano and thank you for bringing the MTHFR issue up. My husband, Toby, may have a MTHFR mutation so I have been doing some research on it. I doubt that I have anything to share that hasn't already been done plus there are far more knowledgeable people on this site than I am. I am still trying to figure all of this out.
I do think Toby has methylation issues. He started out with arm/hand issues after receiving B-12 injections at this job in 2011. Then he went downhill from there with an ALS diagnosis the following year. He ended up with nerve damage in his arms and hands. When I brought up the injections, everyone said it couldn't be the B12 because it is essential for nerve health...and that it is...except for a possible rare situation where the person can have adverse reactions to whatever they add to the injection fluid and pills. We dismissed the B12 as being the problem, thinking after his Lyme results came in, the injections must have triggered the Lyme. After his progression of ALS symptoms stopped, I thought maybe he should start taking B12 again (but in pill form). This was last autumn. His arms and hand function got worse so he stopped taking them and did better. Then I did some more research and found out it could be due to methylation issues so I had him take B12 with folate to open up the pathways for detoxification. This was in October. It happened again so of course he stopped taking those. We talked to his GP and he said he would run some tests for MTHFR, but then he called Toby to say he should go back to the neurologist who diagnosed him with ALS. Now that's another story altogether. He was given a Lyme test when she was running other tests but never told us. She ignored the lab results, apparently because they didn't meet CDC standards, so I am not happy with her. At least she could have told us about Lyme as a possible reason for his ALS symptoms. If she had, I would have done the research sooner and he would have gotten treated sooner. He may not have lost function in his arms/hands or it could have reduced the damage done...who knows.
Any info. regarding the MTHFR mutation, B12 - methylation issues, and glutathione as treatment would be appreciated. I think that needs to be resolved before he can hope to experience any nerve damage repair...if it is at all possible. We will not give up at least trying.

Post Edited (Cat53) : 1/13/2014 3:54:12 PM (GMT-7)

Hi Cat, thanks for the welcome, and for your input ... I am so sorry to hear about your husband's dilemma - hopefully between all the info here and finding the right doctor, we can figure this out ...

The methylation topic can be so convoluted and, at times, contradictory - it is extremely frustrating, as I think sometimes the only course of action is trial and error ... and then that goes out the window because there is the possibility that something we actually need could make us worse when starting it ... I never, in a million years, would have thought any of this possible ...

Whenever I have received a glutathione push, I feel as if I will die from the pain within 24 hours - it is as if I have been given an IV of gasoline ..

When I began L Methylfolate, I had a pretty good first 5 days - then, I tried to add B12 (methylcobalamin ) and had to stop everything ... When I resumed the methylfolate on its own again, I broke out in a chest rash and couldn't tolerate the burning pain ...

I tried hydroxycobalamin on it's own - it was OK, and it gave me drenching night sweats ....

I am low in zinc - and when I attempted to supplement zinc, I got red dots all over my chest and terrible pain ...

This is absolutely insane ...

MTHFR docs say we need to treat infections first .... Lyme doc say treatment becomes unbearable when the methylation issues need to be addressed .....

I cannot even tolerate taking vitamin D at this point ....

Sorry for the rant, but I will keep trying, and eventually, something's gotta click, right ???

Methylation and Neurodegenerative Diseases:

Huntington's:
web.mit.edu/newsoffice/2013/possible-role-for-huntingtons-gene-discovered-0116.html

ALS, Parkinson's, Alzheimer's:
www.frontiersin.org/Journal/10.3389/fnagi.2013.00085/abstract

So what may be happening is there may be mutations that need to be compensated for before MTHFR can be dealt with. CBS is one such mutation.

I have to take Molybdenum in order to tolerate other methylation supplements...without the molybdenum, my body shuts down. This is because of the CBS mutation I have (homozygous for the CBS C699T mutation). Molybdenum (along with Magnesium, Zinc & Iron) is critical for my body to be able to deal with the down-stream products of methylation & glutathione production.

Without these minerals, I become so overloaded with sulfites, I get horribly sick.

BTW, cobolamin is Vitamin B12. Maybe he needs methyl-B12 or hydroxy-B12 instead?? Cyano-B12 (cyanocobolamin) requires conversion by the body to methy-B12 or hydroxy-B12 before the body can use it...and then the body has to detox the cyano part. Some people have a hard time doing this, and we know cyano = cyanide...not something you want floating around in your body...

Thanks Razzle. I will look at the websites. In doing my research, I figured that it would be a step-by-step process in dealing with methylation, etc. I am not familiar with the CBS mutation so I have some reading to do. Toby was taking the methyl B12, not the cyanocobalamine one. I had done my research on that. It's pretty sad that we have to do this. I think Toby's doctor was shocked I even brought up the methylation issue.

Shelley, When my husband was diagnosed with ALS, I researched autoimmune diseases and discovered that Lyme could mimic the symptoms of these so-called diseases. He was tested positive for Lyme through Igenex Lab. He used light/energy treatments once a week for four months and the progression of symtoms ceased....and never came back. Yes...ALS does progress quickly and most people die within 5 years. Even if they live longer, they are usually in a wheelchair with breathing assistance. It is a horrible way to die. There are a small percentage of people who have familial ALS in which case there isn't any cure, but the medical experts will say they don't know the cause of the large percentage of people diagnosed. Lyme must have caused him to experience ALS symptoms and if he hadn't been treated for Lyme, I feel he would have continued on the path to deterioration and death.

SLML, thanks for that info

And it's fantastic to hear that Zeolite has had a positive effect

The gene that may be upregulated is the CBS gene... When upregulated by infection, clearing the infection can clear the upregulation. When upregulated by mutation, one must deal with the consequences of that for life.

The protocol for CBS upregulations is:

Low sulfur diet, and possibly also a low protein diet
Yucca Root (to mop up excess ammonia)
Molybdenum
Vitamin B12 - probably best to start with adenosyl-B12 or hydroxy-B12
Zinc
Magnesium
Iron (only if deficient)
Activated B6 (P5P) only in limited amounts

Then, once urinary excretion of sulfates has dropped, then one can work on very very slowly trying the methylfolate and methyl-B12 for the MTHFR mutations.

When I take the yucca root, my sweat no longer stinks of ammonia and I can apply certain essential oils (esp. wintergreen, peppermint, & related oils) on my skin without them also turning into an ammonia odor.

And all I seem to need is about 1/4 teasp. of the powdered yucca root daily...and after I have been taking the yucca root daily for a while, I can take a short break and the beneficial anti-ammonia effect seems to linger for a week or two before I need to start taking the yucca root again.