Topic: What's the latest with methylation -- have you been helped?
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Would like to hear the latest on this. Are people really being helped with detoxing / tolerating meds / turning these conditions around with the right methyl supps?
The doc forums I follow all say yes, but I would like to hear from patients.
Posts: 3528 | From US | Registered: Apr 2007
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Not me. Not a bit. Hasn't made a lick of difference.
The only thing I haven't added is TMG because the other supps cost a fortune and couldn't afford the TMG.
But all the other supps-yes, took them faithfully, still take the b vits faithfully, and haven't noticed a thing.
How about you CD?
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
well I haven't been taking the methylfolate but I have been taking the methyl B12. But nope.
Greta did you have the MTHFR mutations?
Posts: 3528 | From US | Registered: Apr 2007
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Hi CD,
Yes had the mthfr, mthrr, bhmt, and another mutation.
The mthrr ones were bad so were the bhmt ones. I might need to edit this-can't recall if bhmt is the right initials...
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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TNT
Frequent Contributor (1K+ posts)
Member # 42349
posted
Somebody can correct me, because my mind is foggy about this, but I think I remember that you are to start the methylfolate and then add the methyl B12. And then they work in tandem to get the long route working.
I have not had the supplements help me, at least not any noticeable difference. I still do low dose methylfolate (1000mcg 3x daily with meals), but have cut back on my injections.
I had been doing an injection every other day, alternating between methyl and hydroxyl. So, every 4 days, a methylcobalamin injection (5000 mcg), and, every 4 days, a hydroxycobalamin (2500 mcg).
I did that for months on end, and never noticed a difference. Now I am alternating an injection per week.
I'm heterozygous on both MTHFR SNPs, and have always wondered how much methylfolate I'm supposed to take with those particular mutations. My LLMD couldn't tell me, but said I was covered.
So, maybe I was taking too much B-12 for the amount of methylfolate I was taking, I don't know. Perhaps someone else could chime in about this.
DMG did not seem to provide any noticeable benefit.
I did use Xymogen's TMG/SAMe powder packets for a while, but that got too expensive.
I still take SAMe by itself, though, and that seems to help my mood I think (800mg twice a day). That's still expensive, but not as much as the Xymogen product.
I also take about 30mg of P-5-P 2x daily, and 3mg of Triple Boron. Like I said, my doc has mentioned a couple times that I'm covered.
None of this, except the SAMe, seems to make any noticeable difference for me.
I really wonder if this MTHFR issue is way over-emphasized. It is the newest big thing in the lyme community. A couple years ago, it was parasites; and before that, Cat's Claw was the "rage."
But I have not really heard anyone say that it was THE missing piece in their puzzle...the reason they were not getting well, and that once they addressed MTHFR, their lyme treatment was effective, and they got well.
But maybe I have missed the testimonies of those who have.
If one is homozygous on a particular mutation, I for sure feel one should address that, as it can be more serious and have greater consequences. But for the heterozygous mutations, the gene IS working fairly well on it's own from what I understand.
I believe that many healthy people have these mutations and go thru life just fine. It's when the pathogens get in the body and start creating havoc with the detox pathways because of an overload of toxins from their normal byproducts, and especially an overload on the detox pathways once the killing begins.
But my opinion (a disclaimer: my opinions only stem from my own experience with my own body in regards to these things) is that you can address these mutations all day long and not really get anywhere until you stop the flood of toxins from the bugs! And the only way to stop the source of the toxins is by killing the bugs!
You can try to address a flood by digging ditches to channel the excess away. You can dig, dig, dig, all day long, but unless the source of that water is stopped, you will really get nowhere. You must stop the source of that water.
Posts: 1308 | From Eastern USA | Registered: Oct 2013
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TNT
Frequent Contributor (1K+ posts)
Member # 42349
posted
To illustrate my point above, I had a natural health practitioner tell me that my issue of chemical sensitivities was methylation.
So I took her Cowden products for months on end, not getting better, slowly getting worse. And so she added the methylfolate, methyl and hydroxyl B-12, and some of the supplements I mentioned above.
My LLMD added a few more like P-5-P and Boron, and also the injections of B-12. Did this for months over last winter, but never getting anywhere, only getting worse (even with the low dose ABX I was on at that time, and mHBOT).
It wasn't until I really started to address the INFECTION more properly (with different ABX), that my chemical sensitivity has gotten much better.
A result of poor methylation? Somewhat.
A result of infection overload? You betcha!
Posts: 1308 | From Eastern USA | Registered: Oct 2013
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"It wasn't until I really started to address the INFECTION more properly (with different ABX), that my chemical sensitivity has gotten much better."
That was my experience. I did methyl supps for over a year (B12 injection, methyl folate, methyl guard, pekana, etc...). Absolutely 0 difference with B12 shots in energy or anything.
My doc and I cut my supplement way down and I stopped all these a few months ago.
I do better without them.
I'm heterozygous for 1 mutation so we picked dosages appropriate for that. It made little difference (if any) to supplement. Maybe if I was homozygous it would make a difference.
Posts: 2839 | From California | Registered: Jul 2012
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Part of the reason to take the nutritional compensation for the mutations is to PREVENT future problems (heart disease, strokes, glaucoma, etc.).
No, you won't always notice anything different when you are preventing future bad things...and that is ok.
Also, there are other things which may still block methylation, in spite of taking the appropriate supplements - especially heavy metals or toxins from Lyme, etc.
If that is the case, then the supplements may be helping at a basic level, but you won't necessarily see any difference until the additional blocks are addressed.
Yes, the infections must be addressed - in addition to the methylation genomics.
But also consider the need for dealing with metals, EMF's, yeast, etc.
It is all inter-connected together - the bugs, the metals, toxins, yeast, etc.
But at least with methylation addressed, one may be able to be more aggressive with dealing with the other issues.
I myself notice my chemical sensitivities are far, far less of a problem when I take the supplements that help support SUOX, even though I don't have a SUOX mutation.
This is because the CBS upregulation can act like a SUOX mutation.
So if you don't notice help from treating MTHFR, maybe you also need to treat other mutations in the methylation genomic profile (see http://www.dramyyasko.com for more info).
Furthermore, it can take months for the accumulated toxins to exit the body once methylation is addressed. Thus a difference won't necessarily be "noticeable" immediately.
I know others who have noticed a significant improvement in certain specific areas once they are on the full protocol customized to their specific mutations.
Not many doctors know how to implement compensation for the other genes in the methylation cycle - MTHFR is only a small portion of what needs to be looked at...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
This is a great question. Thanks for raising it, as I've wondered the same exact thing.
My son is homozygous for MTHFR. He also has epilepsy. There is a potential relationship between the two, not well studied or understood. (He doesn't have Lyme as far as we know although we may look into it more at some point).
With the permission of his docs, I started him on methylfolate and methyl B12. His seizures, which had previously been well-controlled, started up again.
I took him off immediately, and not planning to restart.
As for me, I'm heterozygous and do have Lyme. I'm a terrible detoxer it seems, but didn't notice a difference from the supplements. I've had more success with other methods of detox - saunas, HBOT, etc.
Posts: 1737 | From Virginia | Registered: Aug 2011
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
If one starts with too much B12 & methylfolate, it can trigger detox reactions.
Also, if one starts the B12 & methylfolate without first addressing ACAT, SHMT & CBS mutations, it can cause more problems.
This is the primary reason for testing all the methylation genes vs. only the MTHFR genes...it helps determine the order in which things are addressed.
Must start with tiny, tiny, tiny doses. And there is more to it than just B12 & folate. Must also clean up the diet & environment, and absolutely must deal with the chronic infections. Lyme (and probably other infections) is known to interfere with methylation.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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posted
I'm heterozygous for 1 MTHFR mutation, and have tried many things promoted for methylation, both prescription (deplin) and over-the-counter.
I don't think I could tell any particular difference, with or without. It may be helpful, but its certainly not the magic silver bullet some have claimed it to be.
Posts: 108 | From Rural Michigan | Registered: Jul 2011
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lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
I believe MTHFR is bogus and by believing in something bogus you make it real. I believe something above genes, I believe in epigenetics. Go to youtube and listen to what dr. bruce lipton has to say on it.
Believing in MTHFR is dooming yourself to be limited.
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