MTHFR gene mutation making W/D process worse?

[[NJ...]]

I am awaiting my MTHFR genetic testing back, although I know my sister and son have it.

 

I am STRUGGLING with a klonipin taper, making very small cuts and feel like I am dying, and I think this may play a role in it.

 

Is anyone experiencing the same thing?

[[Ne...]]

Here is an article in Mental Health Daily on the subject.  For those under methylated it clearly states that unfavorable results are likely with benzos.

 

http://mentalhealthdaily.com/2015/03/21/undermethylation-vs-overmethylation-causes-symptoms-treatments/

 

[[NJ...]]

Thank you for that article. It's interesting because years ago when I went on lexapro, I immediately experienced a great difference with being on it from a mental health standpoint, which, while I am awaiting my test results, suggests that I may indeed have an issue with MTHFR gene. But if I do have a mutation and am already taking klonipin, not sure how this info helps. And it's too bad doctors don't know much about this. My son's hematologist just said he should be careful with getting blood clots down the road, meanwhile I have a friend who had a stillborn baby due to this genetic mutation (she was treated for a subsequent pregnancy and all was fine).

[[Ne...]]

Thank you for that article. It's interesting because years ago when I went on lexapro, I immediately experienced a great difference with being on it from a mental health standpoint, which, while I am awaiting my test results, suggests that I may indeed have an issue with MTHFR gene. But if I do have a mutation and am already taking klonipin, not sure how this info helps. And it's too bad doctors don't know much about this. My son's hematologist just said he should be careful with getting blood clots down the road, meanwhile I have a friend who had a stillborn baby due to this genetic mutation (she was treated for a subsequent pregnancy and all was fine).

 

I also had recent blood work showing low copper and low homocysteine.  I am an MTHFR C677T so undermethylation for me too,  Go figure, no wonder benzos never helped...I'm probably paradoxical.

[[Be...]]

Do these bad genes lead to blood clots/strokes/MI's?  I was diagnosed with Thrombophilia and am at risk of stroke or heart attack.  My father had a MI and died.  I know my genes are bad, so don't need the testing.  Don't have the money anyway.

[[Sm...]]

Hey all

 

I'm not sure I understand why that article thinks we - MTHFR polymorphism people - have too much folic acid. Do they mean we have too much folic acid because we can't convert it well to folinic or methylfolate? I'm not sure why they think we have too much methyl groups and then advocate SAMe as a supp which is the ULTIMATE methyl donor. Plus we pretty much shouldn't have too much methyl groups cause our MTHFR enzyme doesn't add the methyl to the folate. Maybe that is it? They are suggesting too many unattached methyl groups?

Dunno...

 

I wrote a big thread on this somewhere. I don't know how much sense it makes now. I wrote it as I was starting to suspect this all had a bearing on my taper. My taper did improve considerably by taking things to over come the deficiencies I was likely to have being homozygous MTHFR among other things. At the very last bit of my taper and once off the vitamins again revved me up too much, which is odd cause there was a while there I was taking mega doses of methyl folate and methyl b12. Not sure why my reaction change but I'll work on integrating a small amount back in once I'm pretty much healed from jumping.

[[St...]]

Hey everyone great thread!

 

I also have a double mutation of the MTHFR gene C677T amongst other things that say I can not rebuild new neurons and regulate synapses properly :'(

 

I am 17 months out and have had the worst withdrawal imagineable, I still can't even watch TV or go for a walk.

 

Can I just ask when all of you with this genetic mutation say that you need to supplement is that because you've had additional blood/urine tests to show that the gene mutation is actually effecting you? My doctor says it would be crazy just to supplement on the basis of every gene mutation like this, he says if an an additional blood or urine test actually shows you are deficient in B12, B6, Folate etc. Then he would of course recommend supplementation but if you are not actually deficient then don't?

 

He also was quick to say that Dr Lynch was not in fact a doctor and has nothing more than a standard college degree as his credentials, basically dismissed him as a quack.

 

Despite having the double mutation methyl B12 has been my cryptonite throughout my withdrawal, I've tried it on several occasions because I am a vegan too so need to supplement B12, but when I try it revs me up for days like I'm on acid!

 

Needless to say I feel particularly stuck at the moment

 

Appreciate your thoughts

[[Mi...]]

Stuck - here is my story:

 

 

MTHFR Gene for Buddies

 

I had my genetics tested by 23andme.com. It cost $100. They send you a response in code, so you need to use another site to interpret it or, in my case, a doctor or psychologist who can interpret it.

 

I have 2 bad MTHFR genes (C677T +/- and A1298C +/-) and have to take low doses of meds to counteract them. They can cause depression, difficulty processing medications, and much more. First, I cannot tolerate methyl B12; I have to take hydroxy-b12 instead. I order liquid, 2000 mcg (that's micrograms) from Methyl-Life, then mix it: 17 mg. of water to 500 mcg. hydroxy-b12. I keep this and the original bottle in the refrigerator. I take 1 ml. (30 mcg. of hydroxy-b12) per day. It helps my brain process folate. Then I take 1,600 mcg. of L-methylfolate from a health food store per day. I had to start low (200 mcg.) and work my way up. These dosages are much lower than most recommendations, but I am very sensitive to meds. These meds help my depression and mental clarity, though I still have some depression and brain fog.  All other supplements rev up my symptoms.

 

I also have bad OMT, VDT, VDR, MTFF, BHMT and CBS genes.

 

Methyl-B12 revved up my symptoms. Too much hydroxy-B12 does also, so I have to keep it low. I may try to increase the methylfolate, but it makes my nausea really bad for the first few weeks, so I'm trying to avoid doing that. My recovery is still going very slowly, but at least I don't have the panic attacks, myoclonic jerks and severe depression that I had before treating my genetic problems. Try going to dramyneuzil.com/methylfolate-makes-me-crazy.

 

Small doses of lithium also help with my anxiety. I only take .85 ml. liquid lithium citrate per day now, divided into two doses. A doctor has to prescribe the lithium. Go to dramyyasko.com/resources/webisodes/lithium-connection-webisode/ or google Nancy Mullan, MD re: lithium.

 

This is what works for me.  Good luck,

MirandaJane

 

[[Sm...]]

Hey everyone great thread!

 

I also have a double mutation of the MTHFR gene C677T amongst other things that say I can not rebuild new neurons and regulate synapses properly :'(

 

I am 17 months out and have had the worst withdrawal imagineable, I still can't even watch TV or go for a walk.

 

Can I just ask when all of you with this genetic mutation say that you need to supplement is that because you've had additional blood/urine tests to show that the gene mutation is actually effecting you? My doctor says it would be crazy just to supplement on the basis of every gene mutation like this, he says if an an additional blood or urine test actually shows you are deficient in B12, B6, Folate etc. Then he would of course recommend supplementation but if you are not actually deficient then don't?

 

He also was quick to say that Dr Lynch was not in fact a doctor and has nothing more than a standard college degree as his credentials, basically dismissed him as a quack.

 

Despite having the double mutation methyl B12 has been my cryptonite throughout my withdrawal, I've tried it on several occasions because I am a vegan too so need to supplement B12, but when I try it revs me up for days like I'm on acid!

 

Needless to say I feel particularly stuck at the moment

 

Appreciate your thoughts

 

Hello

 

Sorry you are having such a hard time. I'm also homozygous MTHFR C677T a bit past 6 months out from a 2 year withdrawal and I'm doing pretty good at this point.

 

Your Dr may be right but my understanding is blood tests for folate etc can't give you the whole picture. They can tell you how much of various different forms is running around in your blood supply, but they can't for instance show whether you have useable methyfolate in your cells and in what quantities.

I think your Dr is right that someone with that mutation need not necessarily supplement with folinic acid or methyl folate every day for the rest of their life. But there is also a good chance that there are at least less useable methyl groups floating around, which help with SAMe production and DNA synthesis.

 

The other important thing to remember is everyone is very different. This one genetic polymorphism is but one teeny weeny gene amongst tens of thousands. Add to that epigenetics, lifestyle etc and you get very very different people with very very different systems. MethylB12 as cryptonite to you is an example. To me it was a life saver. It turned my taper around. I almost used it like a calmative drug. I'd start to feel wavey and then pop some methylb12 and would feel better. It was really weird. Now that I'm more normal baseline system and body I can see it has revvy effects. Back then it was the opposite.

 

Anyway, I don't know how much of an answer I gave. You could tread the middle ground and rather than supplement see how you go on aa green juice daily (also one of the few things I HAD to have to make me feel better - green vegetable and beetroot juice, needless to say I think I was very low in methyl groups and betaine!). Green vegetables are the other form of methylfolate.

[[sw...]]

Wow! This might explain why I got hooked on a tiny dose in three weeks and haven't been able to stabilize. Freakin A

[[St...]]

Hi Smiff I just said the same to MJ in another thread but this is the but I'm struggling with "blood tests for folate etc can't give you the whole picture. They can tell you how much of various different forms is running around in your blood supply, but they can't for instance show whether you have useable methyfolate in your cells and in what quantities."

 

My understanding is if the body does have a problem processing B12 or Folate then your homocysteine and methylmalonic acid will be high if your body doesn't then they won't.

 

See below extract on the thoughts on MTHFR from a real geneticist and doctor. I mean if we're all going to start supplementing based on what are genes say could happen to us rather than what is actually happening to us we'd be popping all kinds of pills forever wouldn't we?

 

"As a real geneticist, Charis Eng, MD, PhD, points out.... If high homocysteine levels are suspected, the simple solution is a blood test. If the blood test bears this out, supplementation with vitamins such as B6, B12, and folate or folic acid can be recommended. If the levels are normal, nothing need be done, whether the mutation is present or not."

 

Not trying to be argumentative here just thought this info might be quite relevant in this thread

 

 

 

 

 

Hello

 

Sorry you are having such a hard time. I'm also homozygous MTHFR C677T a bit past 6 months out from a 2 year withdrawal and I'm doing pretty good at this point.

 

Your Dr may be right but my understanding is blood tests for folate etc can't give you the whole picture. They can tell you how much of various different forms is running around in your blood supply, but they can't for instance show whether you have useable methyfolate in your cells and in what quantities.

I think your Dr is right that someone with that mutation need not necessarily supplement with folinic acid or methyl folate every day for the rest of their life. But there is also a good chance that there are at least less useable methyl groups floating around, which help with SAMe production and DNA synthesis.

 

The other important thing to remember is everyone is very different. This one genetic polymorphism is but one teeny weeny gene amongst tens of thousands. Add to that epigenetics, lifestyle etc and you get very very different people with very very different systems. MethylB12 as cryptonite to you is an example. To me it was a life saver. It turned my taper around. I almost used it like a calmative drug. I'd start to feel wavey and then pop some methylb12 and would feel better. It was really weird. Now that I'm more normal baseline system and body I can see it has revvy effects. Back then it was the opposite.

 

Anyway, I don't know how much of an answer I gave. You could tread the middle ground and rather than supplement see how you go on aa green juice daily (also one of the few things I HAD to have to make me feel better - green vegetable and beetroot juice, needless to say I think I was very low in methyl groups and betaine!). Green vegetables are the other form of methylfolate.

[[Sm...]]

It's a good point

[[Mi...]]

You may have plenty of B12 in your tests, but if it is not hydroxy-B12 or methyl-b12 it won't cross the blood-brain barrier and enable you to process folate if you have a bad MTHFR gene.

 

MirandaJane

[[St...]]

Check this article from a leading geneticist: https://health.clevelandclinic.org/2013/09/a-genetic-test-you-dont-need/

 

"There is a genetic test for MTHFR variations. But there’s also a cheaper and more accurate way to test for whether MTHFR variations are causing disease. We simply check the levels of homocysteine in the blood. If levels are high, we can react appropriately. If homocysteine levels are normal — even if there is an MTHFR variation — then nothing needs to be done clinically."

 

If your homocysteine levels are ok that means your body is processing / getting enough B12 and folate regardless of what your genetic predisposition might be.

 

 

[[Mi...]]

Dear Stuck: Re your quotation. My lab tests are normal. But, like I said, without the hydroxy-B12 and methylfolate, the brain does not process folate correctly, no matter what's in your blood. I know this because I feel MUCH different when I take the hydroxy-B12 and methylfolate. Lab tests and web gurus don't replace the cause and effect I experience.

 

MirandaJane

[[Sa...]]

I am also homozygous 677 and in the past b12 supplement, just one under the tonque at i think 1000iu sent me off to the emergency room pacing and freaking out.

From what i read methylation issues are also connected to b12 that means we can't utlitlize the b12 we have in our bodies and hence if we supplement at first without fixing other issues gradually then we get into trouble by basically dumping more b12 in a body that is already backed up and having trouble with it.

I could be wrong and most likely am. 

[[Sm...]]

I am also homozygous 677 and in the past b12 supplement, just one under the tonque at i think 1000iu sent me off to the emergency room pacing and freaking out.

From what i read methylation issues are also connected to b12 that means we can't utlitlize the b12 we have in our bodies and hence if we supplement at first without fixing other issues gradually then we get into trouble by basically dumping more b12 in a body that is already backed up and having trouble with it.

I could be wrong and most likely am.

 

b12 helped my withdrawal a great deal. you see we are just all too confoundingly biochemically complex and diverse to say any one thing about a supplement.

it just depends on whether you are willing to give different things a go. it may not be worth it or it may, but there will be no definitive answer before taking it.

[[Me...]]

I have the MTHFR mutation as well as the CBS and 9 other SNPS in the Methylation Cycle. I have also wondered how it affects w/d because our ability to detox is reduced. I don't know much about Seratonin/Dopamin effects, but I know I don't detox easily. Sensitive to everything, including exercise, I am tapering verrrry slowly. It is hard to tell what sxs are from what!

 

I'll be following your posts!  Thanks!

[[fi...]]

I have the MTHFR mutation - One copy C677 - The methylated B vitamins rev. my system up CRAZY high - B vitamins have always been a problem for me - I havent had my full genome done though - Was going to do Amy Yasko's test - I suspect the COMT mutation as well - and I also suspect methylation is HUGE part of harder withdrawals - but its such a new science - no one really knows how to treat - There are lots of chiropractors and holistic Dr's trying to treat but you will be hard pressed to find people who say "I got my methylation cycle working and I feel great now"

 

I do know we are supposed to stay far away from "Folic Acid" - it doesn't get converted and can be toxic.  I will address all of this once I'm through my taper and post taper withdrawal - I did have a standard blood test for Folate and B12 by my Endocrinologist bc of my thyroid issues and I was well within normal range for both

 

BTW - I saw a reference to Deplin above (not sure who posted) - Deplin is CRAZY high and BIG PHARMA - Several of the really good pharma grade supplement companies have better supplements - like Thorne and Pure Encapsulations - we are supposed to start with the methylated B12 first in tiny doses before adding methylated Folate - (There are 3 different B12's I believe -  I havent yet tried but a lot of people who couldnt tolerate the other one thats recommended are having better luck -  you can get whats called "Methyl trapping" if you dont first start with the B12 - I tried all of this and to no avail - made me crazy with anxiety

 

Dr. Ben (mthfr.net) recommends starting VERY low - when I tried - I did a B Complex from Pure encapsulations - it had only 400mcg of methylated folate - I took the capsule and poured all but a tiny bit of it out - Still sent my sxs through the roof - I simply can't tolerate -

 

I do have a holistic eastern/western practicing MD here in my town that does a lot of this and I plan on working through some of it with her AFTER my taper - for now I'm just too sensitive to supplements of any kind - Cant even take my Calcium (calcium revs. Glutamate)

 

Where again is the other thread on MTHFR and here??

 

 

[[Mi...]]

Fight - I've probably posted this message before, but want to make sure to get it out there. It tells my MTHFR story. There's one change - I can no longer get the liquid hydroxy B-12 from Methyl life, and am looking for another source. I use liquid because I have to dilute it so much. I am VERY sensitive to supplements.  Here's my story. Hope it helps:

 

MTHFR Gene Message for Buddies

 

I had my genetics tested by 23andme.com. It cost $100. They send you a response in code, so you need to use another site to interpret it or, in my case, a doctor or psychologist who can interpret it.

 

I have 2 bad MTHFR genes (C677T +/- and A1298C +/-) and have to take low doses of meds to counteract them. The genes can cause depression, difficulty processing medications, and much more. First, I cannot tolerate methyl B12; I have to take hydroxy-b12 instead. I order liquid, 2000 mcg (that's micrograms) from Methyl-Life, then mix it: 17 mg. of water to 500 mcg. hydroxy-b12. I keep this and the original bottle in the refrigerator. I take 1 ml. (30 mcg. of hydroxy-b12) each morning. It helps my brain process folate. Then I take 1,800 mcg. of L-methylfolate from a health food store about an hour or two after the hydroxy-B-12. I had to start low (200 mcg.) and work my way up. These dosages are much lower than most recommendations, but I am very sensitive to meds. These meds help my depression and mental clarity, though I still have some depression and brain fog.  All other supplements rev up my symptoms.

 

I also have bad OMT, VDT, VDR, MTFF, BHMT and CBS genes.

 

Methyl-B12 revved up my symptoms. Too much hydroxy-B12 does also, so I have to keep it low. I may try to increase the methylfolate, but it makes my nausea really bad for the first few weeks, so I'm trying to avoid doing that. My recovery is still going very slowly, but at least I don't have the panic attacks, myoclonic jerks and severe depression that I had before treating my genetic problems. For more info, try going to dramyneuzil.com/methylfolate-makes-me-crazy.

 

Small doses of lithium also help with my anxiety. I only take 2.7 ml. liquid lithium citrate (mixed at 8 MEQ per ml) per day now, divided into three doses. I started slow and gradually increased it. A doctor has to prescribe the lithium. For info, go to dramyyasko.com/resources/webisodes/lithium-connection-webisode/ or google Nancy Mullan, MD re: lithium.

 

I found Deplin to be too strong. And you have to have the right kind of B-12 in order to make the Deplin effective. I still have depression and many other symptoms, but getting the methylfolate right is a help. It also helps me to take lithium liquid prescribed by my doctor (lithium citrate 8MEQ/5ml. solution). I have worked up to 2.7 ml. per day. Also, I'm postmenopausal and take progesterone (Progensa brand from a special pharmacy - over-the-counter), and now 500 mg. inositol per day. I still have terrible symptoms, but these help a lot.

 

My psychologist predicted my genetic problem based on my symptoms, and the test confirmed it. Symptoms included: lifelong depression, family history of depression and other stuff, depression lifting when I was pregnant (hence the progesterone), bad reactions to anesthetic, anxiety, sensitivity to medications.

 

This is what works for me.  Good luck,

MirandaJane

 

 

[[fi...]]

Hi Miranda Jane - thanks for the info - I was on liquid hydroxy - it was "designs for health" - but it overstimulated me - may be fine for you - I did that for a few weeks and then introduced tiny amounts of the Thorne Research 5-MTHF (comes in 1mg but I poured out almost all of it) - Still wasnt able to tolerate - My Dr told me that means I have other mutations interfering that have to be cleared first - I plan to do Yasko's but just havent yet - My B6 multi contains Methylcobalamin and Matafolin and again I tried dumping most of the pill out........to no avail

 

I know that now they are trying a different B12?? Starts with an A maybe? I just texted this chef that I worked with for awhile who is all into it......

 

I'd love to find a way to figure it out with the hopes that it would help my withdrawal - but to me, it seems like such new science and a lot of tinkering going on - I believe its a factor for sure - but not much that can be done at this point. My dr that does work with this has zero knowledge of Benzo's and wants to give a ton of supplements (for gut health, etc) - all over stimulate me - so for now - I just read about it!

 

But I'd love to follow all threads and I'll let you know when she texts me back - if its a B12 you havent tried - maybe worth a shot for you??

[[fi...]]

Here it is:

 

Adenosyl B12

 

Found it on mthfrliving website - I havent tried and maybe you're way ahead of me on this but just in case..........this once apparently is better if you have other mutations

[[V1...]]

Yes I tested positive double mutation as well. I am taking Deplin (just a very large dose of L Methylfolate marketed as adjunct to antidepressants)...was hoping it would help with depression from long term Clon....but been on it for about 3 months at 15 mg (highest dose) and seeing no difference. My sister has double mutation MTHR mutation as well and suffers no symptoms psychological or otherwise. Guess we are all different & interplay may be different for us all.

[[Le...]]

Following.... I'm  homozygous for MTHFR (A1298C -/+) heterozygous COMT (-/-). I take about 2,000 mg Vitamin C, and a small dose of magnesium daily. Other than that no other supplements. Wow this is complicated!

[[fi...]]

I would be SO interested in knowing if there is ANYONE on BB or ANYONE who has struggled with getting off Benzo's who does NOT have this mutation

 

There are people who do get off these drugs with very little issue - meaning, not very symptomatic with traditional withdrawal symptoms that we have during or after their tapers......

 

I'm so interested in knowing how much this mutation effects our withdrawal.........