posted
Hi--R has two MTHFR gene mutations, and we're trying to improve his severely clogged methylation pathways. His LLMD recommended Xymogen's Methyl Protect. But even less than half a capsule makes R shake severely all day!
Has anyone with the MTHFR tried a gentler supplement and found it effective?
Methyl Protect contains between hundreds and thousands of the recommended daily value for different B vitamins. This sounds a little extreme. I've read that very high levels of some B vitamins can have nasty side effects, and that a balance is important.
R has normal--not high--homocysteine levels, by the way.
Thanks for any suggestions for alternative supplements.
Posts: 431 | From New England | Registered: Dec 2011
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posted
Our son has two copies, one from me and the other his Daddy for A1298C. So, he has a double whammy. I have one copy of the A1298C and my husband has both A1298C and 677.
From out experience we started low with Folate - Folapro, and slowly worked up from one pill, up to 5mg of 5 -MTHF, twice a day.
We did the same with P-5-P, and methylcobalamin -B-12.
The hardest for our son was the Folate. If you go to MTHFR.net, you can find a lot of information and also read comments from others. It shows just how different everyone is, and how some have to go very slowly.
MetanX is a prescribed "B-vitamin" broken down. You can Google it and compare the ingredients to the one you have.
Deplin is another prescribed B vitamin but it is only right now in the Folate form- I think 7.5 mg and 15 mg.
If you post what methylation defects you are dealing with, which ones, then maybe others can give some more precise feedback.
Also, there a some good health food and vitamin stores that carry the broken down B vitamins.
It sure is tricky to figure out. It's great you are seeking answers and asking good questions.
Posts: 167 | From Southeast Tennessee/Chattanooga/Atlanta | Registered: Oct 2012
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posted
Thank you, Anissa! R has both of the mutations your son has--one copy of the A1298C and one copy of the C677T. It sounds a really good idea to take one converted B vitamin at a time, start low, and taper up the dose.
How is your son doing now? Have the converted B vitamins made a difference? I hope they've made it easier to improve his health.
Posts: 431 | From New England | Registered: Dec 2011
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posted
Yes, they have helped quite a bit. We noticed his energy, appetite, and all around health improve.
The dr said having these methylation problems can really cause a lot of havoc on our body.
It's great you learned this important information about your son. It will be a significant part of his healing.
We know that our son will need to be on broken down B vitamins the rest of his life, and that is completely fine with us. They are vital for so many different body functions.
I will keep you all in my prayers and hope your son will feel better! Posts: 167 | From Southeast Tennessee/Chattanooga/Atlanta | Registered: Oct 2012
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Hi Anthro and R.
I thought I had the C677T mutation also but it looks like I only have the A1298C of the MTHFR.
But I have a homozygous mutation of the MTRR A66G.
I guess it helps use B12 to convert homocysteine to methionine.
So I am trying to slowly increase methylcobalamin.
posted
I have the C667T mutation. Does this interfere with Lyme treatment as I'm starting Zith, Samento and Banderol after the first of the year.
My LLMD failed to discuss this with me so I don't have a clue how it could affect me while on ABX.
I also have Factor V Leiden (blood clots too fast) and will know in a week if I have the BRCA mutation for breast and ovarian cancer.
Posts: 245 | From Texas | Registered: Jul 2009
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Razzle
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Member # 30398
posted
Mutations in the methylation pathway enzymes can lead to difficulty detoxing. So that means herxes may be more extreme or intense, and thus you will likely need to pay closer attention to supporting your body's ability to detox.
Mutations in methylation pathway enzymes can also impair the immune system, cause fatigue or other "chronic health concerns," and/or affect many other parts of the body and/or brain.
The best support for MTHFR mutations is methylfolate, P5P (active Vitamin B6), and methylcobolamin...but sometimes taking these supplements can trigger toxin dumps from where the body has stored toxins for years, which can be quite uncomfortable.
Go slowly. Start with tiny doses (fractions of pills or a tiny bit of the contents from a capsule) and work your way up to recommended or prescribed doses very gradually.
-------------------- -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: 4166 | From WA | Registered: Feb 2011
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posted
what about coffee enemas and lots of binders like chlorella, pectin, clay?
Posts: 803 | From USA | Registered: Oct 2013
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
Thorne has a supplement that is just the methyltetrahydrofolate that supposedly the body cannot make itself if you have the mutation. Perhaps you could try that to see if it is better.
It might be they just need a lower dose of the Methyl Protect.
Or the straight MTHF product (like Thorne's) could be better.
This is a good situation for the energetic testing to see what is really better.
R's reaction to this is likely a sign of other problems ... behind on detoxing is one possibility, but probably there are many others. B vitamins aren't normally that bad, so it is information, probably useful information, that this is causing problems.
Posts: 1927 | From se usa | Registered: Mar 2010
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Razzle
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Member # 30398
posted
It is also possible he has other mutations which need to be dealt with before MTHFR mutations can be treated...
-------------------- -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: 4166 | From WA | Registered: Feb 2011
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CD57
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Member # 11749
posted
I also have the double AC1298C. I take methyl life b-methylated sublingual tablets, every other day. I do not take B-6, guess I need to add P5P.
I have not noticed a difference with the supps.
Posts: 3528 | From US | Registered: Apr 2007
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
I have mutations in both A1298C and 677. I am taking Neuro Biologix Neuro-immune stabilizer cream and Perque Activated B12 Guard. I haven't really noticed a difference in the way I feel since starting these, unfortunately.
Posts: 2386 | From New England | Registered: Aug 2011
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
This site explains everything better than anything else I have found but it is very hard to understand.
If you have a COMP mutation then you cannot tolerate methyl groups. It helps to take folinic acid instead of methylfolate. You might also have trouble with B6. You probably shouldn't take a "multi" B vitamin. Be careful you are getting hydroxy B12 instead of methylcobalamin.
Assuming you have a CBS mutation - because 90% of chronically ill people do - then you should follow a diet low in sulfur. That means eliminating meat, eggs, cabbage, kale, spinach, peas, mustard, carrageenan and dried fruit like apricots.
You need to look at all of your mutations, not just MTHFR. There are certain ones you should pay attention to first and then slowly address all of them.
I have a very hard time grasping it all. I just know that MRHFR is only one piece of the puzzle.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Thank you again, everyone! Michael, he tried 1/8 of a MethylProtect capsule, and even this little caused shaking. We've ordered the big 3 individual B supplements by Thorne: P5P, Methylfolate, and methylcobalamin.
Neff, that site is wonderful but really complex! The information is rather overwhelming at the moment. But we'll take a look to see what was actually tested for, and how much beyond MTHFR we need to go.
Fingers crossed that he doesn't have COMP! And wow, that list of foods to dump if you have a CBS mutation would get rid of most of the remaining foods he can eat after eliminating those to which he has intolerances!
Still glad to learn about it though: thanks!
Posts: 431 | From New England | Registered: Dec 2011
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Razzle
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Member # 30398
posted
I think COMP is a typo - should be COMT...
-------------------- -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: 4166 | From WA | Registered: Feb 2011
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Jane2904
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posted
Anyone with A1298C one copy, notice improvements
with supplementing Folate, B12 etc?
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
I have one copy and didn't really notice any difference when switching to the methylfolate and methylcobolamine.
The funny thing is, a LLMD (neurologist) that I was seeing at the time told me to increase my folic acid after we learned of this mutation, while my LLNP told me to switch to the methylated versions of folic acid and B12.
I felt like the neurologist lost credibility when he told me this. According to everything I have read, my LLNP was right. But unfortunately, I have not noticed any difference - good or bad.
My most recent LLND recommended Neuroimmune stabilizer topical cream (by Neuro Biologix) that has both of these (plus more) in it. I have just started taking their glutathione cream also. But again, not sure I notice a difference.
Posts: 2386 | From New England | Registered: Aug 2011
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klutzo
Frequent Contributor (1K+ posts)
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posted
Please be VERY careful with P5P or any other form of B6. Toxicity can happen at amazingly low levels in some people.
I developed SEVERE small fiber polyneuropathy from taking only 100 mgs. per day for a month, and only 50 mgs. of it was P5P. I may never recover. It hurts 50 times worse than Fibro and Lyme combined and Lyrica and steroids are not helping. I get zero sleep. I am on fire like a blow torch and constantly rubbing myself with ice cubes. If this keeps up, I am taking myself out. It is unbearable.
The Neurologist has me on a supplement holiday to help try to calm it down, but permanent damage is being done. The tests to prove small fiber neuropathy are expensive and painful. I have autonomic symptoms too.
Please err on the side of moderation.
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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Marnie
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Member # 773
posted
WRONG P5P!!!
***Now brand*** contains B2 and Mg in addition to P5P.
Other brands are NOT THE SAME!!! Been there...done that!
The B2 helps us *absorb B6* (P5P is the active form) and the Mg...
Well, ya know...B6 works WITH Mg.
Even though you are getting B9 in foods, you can't use it because your body can't break it down to
its useful form.
So, in a way, you are B9 deficient. Normally the body should clear any excess of this water soluable vitamin.
Depakote lowers both folic acid and B6, but you will end up with a "fatty liver". MANY of the anti-seizure drugs -> high blood glucose levels...not the liver's fav. "food".
NORMALLY our liver stores 20 days worth of B6. Pretty important!
The DNA genetic damage happens in the cytosol (where the DNA comes from mom and dad). This impacts the mtDNA methylation - mitochondria DNA (which comes from mom only).
Then "undermethylated" mtDNA (mitochondrial DNA) = up goes ROS.
MitoQ might help...a lot.
You likely have seen Bob's picture of the methylation cycle, right?
When homocysteine (toxic) levels are high, we have 2 ways to reduce it.
Remethylation (which is where MTHFR fits in)= a "recycle pathway" or the transsulfuration pathways (which is where B6 working with CBS (enzyme)-> cysteine -> taurine (lowers cholesterol) + GSH (glutathione) + sulfate...fits into the picture.
Both pathways working produce other proteins/amino acids we need.
Bb looks to mess with the transsulfuration pathway as it looks to reverse the process...
cysteine -> homocysteine (which it does not need or use except to poison us. Bb has a "methyl" donor too).
So, in order to lower homocysteine, we have to use the "recycle" or remethylation pathway which is very problematic if someone has genetic difficulties anywhere along those lines (many genetic points of impact besides MTHFR).
In the picture, see MS? It is methionine synthase and is inhibited by a candida toxin. See BHMT? It is Zn dependent...for starters.
BTW...by forcing the remethylation pathway -> methionine which contains sulfur.
As in H2S.
Treatment of sulfur with hydrogen gives hydrogen sulfide.
Bb isn't the only pathogen that uses H2S.
BTW...my son takes very low dose DMAE daily in addition to (Now) P5P. L-theanine is also helpful for HIM - genetic work-arounds.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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posted
I have several mutations as listed from the 23andme saliva test I took and interpreted by geneticgenie. Haven't gone to the doc yet for beginning treatment but can report in when I do.
I have benefitted from FIR sauna - got much less chemical sensitive.
Posts: 13116 | From San Francisco | Registered: May 2006
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I didn't read all the posts but here are some sites for help.
If your son is COMT + then he should take folinic acid instead of folate. it is a good idea to get all the mutations checked. You can do this through 23&Me and then down load on genetic genie - at least you could several months ago.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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I've been taking MoRS from Systemic Formulas and almost immediately I felt a difference.
I am calmer and the low grade fever is better. It doesn't have enough B6 in it so I think I'm going to add that to it when I take it in my morning shake.
Posts: 247 | From Ca | Registered: Feb 2007
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posted
When I just wasn't getting better after years of different abx and actually seemed to be getting sicker, my LLMD did the gene test...sure enough...so she put me on Deplin-Algal oil 15 caps followed by 5000mcg of B12. Plus I continued on with herbals and I also green juice. I am not nearly as toxic as I used to be. She told me I should stay on this for the rest of my life though; just like Synthroid for a a dead thyroid. Hope this helps.
-------------------- When you reach your "wits-end" remember this: "Peace I leave with you, my peace I give you. I do not give as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27 Posts: 397 | From Loudoun County Virginia | Registered: Mar 2007
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
Question for you. If one is COMT+ but has MTHFR 677T Homozygous then does one take folinic acid? It is my understanding that with MTHFR that folinic acid cannot convert into 5-methylfolate so even if one is COMT+ and cannot tolerate methyl donors that one still has to take 5-MTHF in order to bypass the MTHFR mutation. I just want to make sure I am understanding this because I need to understand what I should be taking!
Thanks!!!!
Posts: 123 | From Washington State | Registered: Dec 2013
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But we'll take a look to see what was actually tested for, and how much beyond MTHFR we need to go.
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