MTHFR gene mutation making W/D process worse?

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Oh BenzoHell:

 

You can only imagine what I thought when I saw the letters MTHFR is the title of your thread!

Do tell.

 

Mother F****R

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So you have a DOUBLE mutation like me? Did you do "Protect" through out your taper? Did it rev up your symptoms?

 

Yes I have both. During my lyme treatment I kept getting sicker and sicker. Turns out I tested for this gene and have both mutations :o.

 

So yes, I stayed on those two supplements during my w/d but did reduce my dose of Methyl Protect during the first few months due to the high level of B vitamin. I do not think the TMG or Methyl Protect reeved up my w/d symptoms.  As a matter of fact when I ran out temporarily I think my w/d got worse..i never really made that connection till now. Helping to keep my Homocysteine levels at a normal level helps a lot with my MCS as well which always gets worse during w/d.

I better jump back on my methylcobalamin b12 injection and my high b6 supplement wither I think it revs my symptoms or not. I've just gotta do it.

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I tested positive for both MTHRF genes mutations. My LLMD has me on Methyl Protect by Xygomen and TMG (Anhydrous Betaine) which is necessary for supporting healthy Homocysteine levels.  I don't think 23andme is testing for this any longer. Some recent FDA issues?

 

23andme do the testing still but whilst FDA are ruling on the situation they won't give you health info associated with it. It is just the data

You take the 23andme info and you put it through another website that gives you health info

 

My results will be back in a couple of weeks

I'm intrigued! I'm guessing mthfr and possibly GAD and COMT polymorphisms too

 

I'm curious too how you handled those supps

 

Oh that's good to know about 23andme. Good luck with your results! Where can you go to interpret the raw data?

 

Not sure if I am allowed per board rules to post this but here is the run down on the ingredients of Methyl Protect. My doc recommended taking additional Betaine Anhydrous (TMG) to keep homocysteine levels down as the amount in the formula below is not enough to reduce levels.

 

Methyl Protect™

Optimal Methylation Support Formula*   

 

Methyl Protect is a comprehensive formula designed to support optimal methylation and help maintain healthy homocysteine levels already within normal range. It features five key nutrients that are involved in homocysteine metabolism: folate as calcium folinate and Quatrefolic®† for increased bioactivity; trimethylglycine; and vitamins B12, B6, and B2. These five nutrients, provided in activated forms, support enhanced methylation and overall cardiovascular health.*

 

Supplement Facts

 

Serving Size: 1 Capsule

 

Amount Per Serving

 

% Daily Value

 

Riboflavin (as riboflavin 5'-phosphate sodium)

25 mg 1471%

 

Vitamin B6 (as pyridoxal 5'-phosphate)

10 mg 500%

 

Folate (1000 mcg as calcium folinate and 1000 mcg as 6(S)-5-methyltetrahydrofolic acid, glucosamine salt†)

2000 mcg 500%

 

Vitamin B12 (as methylcobalamin)

1000 mcg 16667%

 

Betaine Anhydrous (trimethylglycine)

500 mg **

 

During certain times of my w/d I had to reduce my dosage of this because it would kick up my dr/dp. Sometimes I would take just one ever other day and sometimes just a few times a week. Now I can take it every day even though I am in a bit of a kindle. I always feel so much less toxic and clear on TMG. I take liposomal glutathione and an IV push once a month but I don't think that touches the mutation and is more directed towards liver support - I think.

 

 

 

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I use the product Vessel Care by Metagenics. It's made for mthfr.

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I use the product Vessel Care by Metagenics. It's made for mthfr.

 

I 'm gonna check Vessel Care out. I take other Metagenics products and have had great success with them - probiotics and other gut related supp.s. Best to you. BD

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I use the product Vessel Care by Metagenics. It's made for mthfr.

 

Looks pretty much the same as mine but has zinc in it? Had you taken it and then stopped? How bad did it reeve you up?

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You need to ask for an Rx of Deplin.  It is a prescription vitamin that helps your body convert folic acid to B12.  It is the most commonly prescribed med for the MTHFR mutation that you have. 

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You need to ask for an Rx of Deplin.  It is a prescription vitamin that helps your body convert folic acid to B12.  It is the most commonly prescribed med for the MTHFR mutation that you have.

 

Isn't  that just Folate - the same kind that is in the supplements mentioned in this thread? This is what I had been told....maybe not though?

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Me too. I take the probiotic ultra flora IB by Metagenics.

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What foods would help with these mutated genes and methylation issues?

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You need to ask for an Rx of Deplin.  It is a prescription vitamin that helps your body convert folic acid to B12.  It is the most commonly prescribed med for the MTHFR mutation that you have.

Interesting. Never heard of it. Thanks for sharing. I appreciate that.

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What foods would help with these mutated genes and methylation issues?

From my understanding not much food can help.

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Me too. I take the probiotic ultra flora IB by Metagenics.

 

That's the same one I take and it works better for me then even VSL. I have another Metagenics product called, " Glutagenics". It's suppose to help heal leaky gut issues but it has L-Glutamine in it so I think that might be over-stimulating to the CNS. Every time I have taken it I end up getting flashing lights in my vision but it really helps my gut!

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What foods would help with these mutated genes and methylation issues?

 

Here's a good website that mentions some nutritional considerations for those with the MTHFR gene.

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The testing and supplements sound very expensive.  What to do for those of us now on disability or broke because of our s/x's and have limited funds and can't pay for testing or supplements? 

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The testing and supplements sound very expensive.  What to do for those of us now on disability or broke because of our s/x's and have limited funds and can't pay for testing or supplements?

Honestly its one of those things you need to be tested for first unfortunately. I can recommend Vessel care by Metagenics but if you don't have a gene mutation that is way too much vitamin B12 and B6 for an individually without mthfr. Methylcobalamin (the form in Vessel Care) is EXTREMELY potent to those without the mutation. We're talking 16,000% of your daily value in one pill.

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I never could tolerate the B vitamins, big rev problem even before the benzo's.  All my life, they've revved me up. 

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I never could tolerate the B vitamins, big rev problem even before the benzo's.  All my life, they've revved me up.

If you had a mutation they wouldn't rev you up. So I guess there's your answer.

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I use the product Vessel Care by Metagenics. It's made for mthfr.

 

Looks pretty much the same as mine but has zinc in it? Had you taken it and then stopped? How bad did it reeve you up?

That's a good question. First 3 days no rev, then by day 4 I begin to feel revved up if I remember correctly. Just started back on today. I've never stopped the adrenagen tho by Metagenics. Huge for my adrenal fatigue from all this crap benzos has caused. sometimes I even feel like it slows down the head electricity or brain zaps from benzo W/D.

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I had the same experience which is why I would take it for a few days in a row and then take a day or two break ect....Once I got to about month 4 post jump I was back to everyday without a problem.

 

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I have a mutation on one allele so I think that reduces you methylation by 40% or so. I was taking 5000mcg of methyl B12 but have cut it down to 1000/day. The doctor wanted me to take 10mg of methylfolate but I only take 1mg. These doses don't seem to bother my wd sx. I got a B12/b vitamin shot once to see if I wanted to take them for 6 weeks, first it is a big injection in your thigh and it hurts like hell and I was practically crippled for a day, also it really cranked me up, so I nixed that idea right quick.

I was looking at the testing on Amy Yasko's site, it looks like a very complete test for methylation issues but I really want a GAD panel tested too, and will have to call them to see if they can add that. I thought 23 and me weren't testing anymore but will check with them too.

I have tried liquid glutathione and it made me very nauseous, so I stopped. I am waiting till post jump to try many other supplements like nac etc, cause I am just too scared to feel any more horrible than I already do.

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I had the same experience which is why I would take it for a few days in a row and then take a day or two break ect....Once I got to about month 4 post jump I was back to everyday without a problem.

Just the one Vessel Care from yesterday revved me up and destroyed my sleep. I've gotta take it tho or I'm hardly methylating. Which is a dangerous place to be. Ugh such a tough situation.

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I have a mutation on one allele so I think that reduces you methylation by 40% or so. I was taking 5000mcg of methyl B12 but have cut it down to 1000/day. The doctor wanted me to take 10mg of methylfolate but I only take 1mg. These doses don't seem to bother my wd sx. I got a B12/b vitamin shot once to see if I wanted to take them for 6 weeks, first it is a big injection in your thigh and it hurts like hell and I was practically crippled for a day, also it really cranked me up, so I nixed that idea right quick.

I was looking at the testing on Amy Yasko's site, it looks like a very complete test for methylation issues but I really want a GAD panel tested too, and will have to call them to see if they can add that. I thought 23 and me weren't testing anymore but will check with them too.

I have tried liquid glutathione and it made me very nauseous, so I stopped. I am waiting till post jump to try many other supplements like nac etc, cause I am just too scared to feel any more horrible than I already do.

Believe me I know that "scared" feeling. Yesterday I decided it was time to get back on my methylcobalamin. Bad idea sent me into a horrific wave. I know I'm not methylating properly but can't handle the rev up of s/x when I take it. Not sure what to do anymore.

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I have a mutation on one allele so I think that reduces you methylation by 40% or so. I was taking 5000mcg of methyl B12 but have cut it down to 1000/day. The doctor wanted me to take 10mg of methylfolate but I only take 1mg. These doses don't seem to bother my wd sx. I got a B12/b vitamin shot once to see if I wanted to take them for 6 weeks, first it is a big injection in your thigh and it hurts like hell and I was practically crippled for a day, also it really cranked me up, so I nixed that idea right quick.

I was looking at the testing on Amy Yasko's site, it looks like a very complete test for methylation issues but I really want a GAD panel tested too, and will have to call them to see if they can add that. I thought 23 and me weren't testing anymore but will check with them too.

I have tried liquid glutathione and it made me very nauseous, so I stopped. I am waiting till post jump to try many other supplements like nac etc, cause I am just too scared to feel any more horrible than I already do.

Believe me I know that "scared" feeling. Yesterday I decided it was time to get back on my methylcobalamin. Bad idea sent me into a horrific wave. I know I'm not methylating properly but can't handle the rev up of s/x when I take it. Not sure what to do anymore.

 

I don't think you should feel this bad for anything that is good for you personally

 

Did you get a full genetic test because some COMT polymorphisms mean you can't handle methyl groups

Is there someone working with you on this? I'm not sure just taking vessel care, that is making you revved, is a very personalised approach. You may need to try each of the B vitamins seperately - to see if you react to any in particular - and TITRATE THEM UP. Dr Ben Lynch recommends trying each one individually, slowly adding new ones and titrating them up. It isn't uncommon to get into an overmethylation, or methyl trapping, situation that can leave you with the side effects you may be experiencing. That is why the amount will be different for each person and you should be titrating up to a level that is ok that doesn't have side effects. Dr Ben Lynch also recognises that one can flip into methyl trapping very easily, even if they have titrated up, so you should have some niacin (or tumeric) on hand to off set that (it slows the methylation a bit to reduce the side effects, the methyl groups will still be there to drive it enough). Look up Dr Ben Lynch methyl trapping.

If you are getting that revved you may be using methyl groups up trying to deal with the adrenaline and what not anyway.

 

Here is the thread I made on it - but also Methylation Cycle dysfunction in general cause as your response to vessel care shows sensitive people like us can't necessarily just chuck on a whole bunch of methyl b vitamins. There are many many cycles in methylation, and many many more enzymes besides MTHFR which could screw us generally and in withdrawal, and they all interrelate. http://www.benzobuddies.org/forum/index.php?topic=123392.60;topicseen

 

On that thread there is mention somewhere of what web pages you can plug your 23andme data into. You can pay for the ones with Dr Yasko or MTHFR.net. There is at least one free one.

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oo as luck would have it someone on that methylation thread just posted this which talks a lot about MTHFR and has some links to plug 23andme info into

 

http://www.stopthethyroidmadness.com/mthfr/

 

Personally I wouldn't be just taking B vitamins for homocycsteine, or MTHFR, without knowing some other things, and without either working with someone who knows their stuff - ALL their stuff not just the folate/b12/MTHFR cycle - or if I did it on my own I'd be taking one vitamin and recording data, slowly increase it and if that was fine add in others.