MTHFR gene mutation making W/D process worse?

[[Sm...]]

Oh one more thing.. Dr Amy Yasko, and Dr Ben Lynch - and others I've heard - all recommend sorting out a number of other things before hitting the methyl b vitamins.

That includes: (1) lower glutamate, ammonia and other neuroexictoxins partly through diet (2) And working on your gut health.

[[Be...]]

Good to know, so just eating better alone can be a big help?

[[Sm...]]

Good to know, so just eating better alone can be a big help?

 

yes.. to an extent

Have a look at that thread.

Slowly slowly goes most protocols with this and I'd think that was doubly true with someone in benzo wd.

[[Sm...]]

So I just got my results

 

I am also homogenous MTHFR C677T

 

The MAO, COMT and DAAO enzyme polymorphisms are freaking me out more though. I'm working on not jumping to weird conclusions about stuff I know nothing about.

 

Yar so.. jury out on my feelings about genetic testing at this stage (having said that I'm glad I can at least compensate for the MTHFR at some point)

[[Lo...]]

Following

[Guest [Ma...]]

Sniff,

This is an interesting thread. I too was tested a year ago and am intrigued with the possibility of understand how genetic expression may influence this benzo experience

For example, it was suggested that I take care of the SHMT first.

The Serine to glycine conversion which uses B6 as a cofactor.

My physician explained glycine's role with GABA production & it's use as a glutamate antagonist.

Thanks for raising this topic.

Marija

[[Ne...]]

Www.deplin.com

 

[[Be...]]

Sniff,

This is an interesting thread. I too was tested a year ago and am intrigued with the possibility of understand how genetic expression may influence this benzo experience

For example, it was suggested that I take care of the SHMT first.

The Serine to glycine conversion which uses B6 as a cofactor.

My physician explained glycine's role with GABA production & it's use as a glutamate antagonist.

Thanks for raising this topic.

Marija

My pleasure. It Needs to be talked about.

[Guest [Ma...]]

Sorry BH, much thanks to you👍

This will hopefully be fully researched and published in the near future.

[[Sc...]]

Marija, I just read your signature, my God that doctor should be tried on criminal charges or at the least sued. Unbelievable, I thought I had seen morons.

In the UK (www.benzo.org.uk), I read that the government has established very strict guidelines for prescribing benzos, and many physicians are not following them. They have started suing them, and have been successful.

If I ever get through this nightmare I will work to try to see the same thing happen in the US.

Best wishes.

[[Be...]]

Sorry BH, much thanks to you👍

This will hopefully be fully researched and published in the near future.

God bless you Marija. Your doctor should have his license BURNED!!!!

[[Be...]]

So I just got my results

 

I am also homogenous MTHFR C677T

 

The MAO, COMT and DAAO enzyme polymorphisms are freaking me out more though. I'm working on not jumping to weird conclusions about stuff I know nothing about.

 

Yar so.. jury out on my feelings about genetic testing at this stage (having said that I'm glad I can at least compensate for the MTHFR at some point)

So do you have a single or double mutation?

[Guest [Ma...]]

ScaredinMa & BH,

Thanks for your support!

And perhaps together we can make some headway into bringing functional medicine into the benzo equation for mainstream medicine to carefully consider.

We need to be vocal and push the envelope. I've written to my state board of pharmacy and am working on a letter to the board of medicine.

It's been a long, painful journey.

But I'm thankful that I am better from a year ago where I had intermittent vision, lose if hearing, liver shutting down etc.

 

BH, I too flipped when I read my 23andme report. Thought I was doomed!  But after many months of working with a knowledgeable integrative dr, chiropractor & nutritionist I'm making improving! 

I am truly grateful.

Much healing to you both.

Marija

[[Sw...]]

Following

[[Me...]]

This was an interesting thread and a bit hard to follow with all the new vocabulary.  In a nutshell I have been very anxious all my life, as both my mother and father were.  (And brothers).  I am currently down to 3.4 V from 10mg last January.  2014 wasn't super awful, I can go to work but sleep and brain fog can be tough. The cuts recently are .05 and have similar effects to larger cuts last year.  I dread looking forward.  Ambien I'll deal with later?  My question, should I get tested for mthfr gene mutation and might it help with withdrawal/anxiety.  Nothing to do with anxiety?  Thanks in advance

I wouldn't have made my progress without BB.

[[va...]]

Oh BenzoHell:

 

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

 

yaaaa, me too.     

[[Sm...]]

So I just got my results

 

I am also homogenous MTHFR C677T

 

The MAO, COMT and DAAO enzyme polymorphisms are freaking me out more though. I'm working on not jumping to weird conclusions about stuff I know nothing about.

 

Yar so.. jury out on my feelings about genetic testing at this stage (having said that I'm glad I can at least compensate for the MTHFR at some point)

So do you have a single or double mutation?

 

Homogenous means mthfr is a double mutation yea

So I'm with you on methylation around 10%

Awesome

Mao and COMT mean I eliminate adrenaline even less

I have a few gad polymorphisms too which means less enzymatic gad converting glutamate to GABA

 

So yar

 

Not a good situation for benzo wd

 

How I approach it will be an interesting question

 

Marija

Do you feel treating your methylation problems has helped your benzo wd?

 

There are a lot of things that need to be sorted before we chuck in b12 and methyl folate so don't give up hope you can't use them benzohell

Just maybe have to do some other things first and/or take it very very slow

[[Be...]]

So I just got my results

 

I am also homogenous MTHFR C677T

 

The MAO, COMT and DAAO enzyme polymorphisms are freaking me out more though. I'm working on not jumping to weird conclusions about stuff I know nothing about.

 

Yar so.. jury out on my feelings about genetic testing at this stage (having said that I'm glad I can at least compensate for the MTHFR at some point)

So do you have a single or double mutation?

 

Homogenous means mthfr is a double mutation yea

So I'm with you on methylation around 10%

Awesome

Mao and COMT mean I eliminate adrenaline even less

I have a few gad polymorphisms too which means less enzymatic gad converting glutamate to GABA

 

So yar

 

Not a good situation for benzo wd

 

How I approach it will be an interesting question

 

Marija

Do you feel treating your methylation problems has helped your benzo wd?

 

There are a lot of things that need to be sorted before we chuck in b12 and methyl folate so don't give up hope you can't use them benzohell

Just maybe have to do some other things first and/or take it very very slow

Do you feel like its effected your taper at all? Have you struggled a lot through the taper? If so in what ways.

[[Sm...]]

Hey

 

So I'm now on 400mcg methyl folate and 1mg methyl B12 and it has improved my taper significantly.

I can cut twice as fast and have half the symptoms.

 

It has only been 1.5 months so it is a bit too early to call it for sure.

 

I started taking these slowly and seperately. I'm not taking a big methyl multi, and I'd guess that is too much for most of us. If for instance I had taken a big methyl multi I would have had a terrible response because of the B6. I'm still reacting badly to all forms of B6. I've got quite a lot of CBS snps which predict a problem with B6 but I dunno yet if that is the problem. Still, cause I tried everything seperately I could avoid it.

 

So maybe you could have a go at methyl vitamins Benzohell, taking B12 for two weeks on its own then slowly add in methylfolate. When I started the B12 I took it spread out through the day. In fact I took a crumb of the sublingual whenever I'd start getting a surge of wd yuck and it would drop it immediately. Now I can handle taking it all at once but that is after a month or more.

 

The other thing that has been good is NAC. NAC will probably help anyhow cause of how it reduces glutamate. But it should be helpful on the methylation front because it helps build up gluthathione.

 

So in short Benzohell you could have a go at methylation vitamins again but I'd suggest the following: try to build up your glutathione first, or during B12 stage, with either NAC or liposomoal glutathione; take small amounts of methyl B12 throughout the day for a few weeks; slowly add in methyl folate building up; if you start feeling over buzzy have a sugar free electrolyte (NUN is one brand) on hand or a small niacin lozenge. They'll help kill the rev. The electrolyte evens everything out for me. I'm not sure of the biochemical reason so much though Ben Lynch suggests it has to to do with potassium and mag : here is an article on preventing methylfolate side effects http://mthfr.net/preventing-methylfolate-side-effects/2014/11/26/

 

If you have a go let me know how it goes. I'm at once worried it will fall apart and amazed at how well it is working.

 

[[Sm...]]

oh also I held when I was trying this stuff.

Plus I'd held for two weeks prior. I was kinda stable. I wasn't as stable as I am now but I wasn't in strong withdrawal.

 

Lemme know where you are at 

[[An...]]

Wow, I'm a bit late to this party! My taper got a bit interrupted by a blast of steroid shot, which I naturally reacted horribly to, and an adrenal crisis (never had that happen before....).

 

Long story short, homozygous MTHFR 677 as well as COMT and several CYP enzymes down. I don't even know yet what COMT IS. Not sure I want to. I like what you had to say there, Smiff, I had started a methylated b12 just in case, but you say there are other ways? This is so bizarre, like an alternative universe. Before they put that benzo back in my system, I had perfect health and no anxiety at all. Just can't take other meds without seizures. So BAM, more klonopin and now I'm back on the road to tapering, still not healed from anything. Whatever keeps me out of the ER at this point, really. Just bought methyl folate today.

[[Be...]]

Following

[[Sm...]]

Wow, I'm a bit late to this party! My taper got a bit interrupted by a blast of steroid shot, which I naturally reacted horribly to, and an adrenal crisis (never had that happen before....).

 

Long story short, homozygous MTHFR 677 as well as COMT and several CYP enzymes down. I don't even know yet what COMT IS. Not sure I want to. I like what you had to say there, Smiff, I had started a methylated b12 just in case, but you say there are other ways? This is so bizarre, like an alternative universe. Before they put that benzo back in my system, I had perfect health and no anxiety at all. Just can't take other meds without seizures. So BAM, more klonopin and now I'm back on the road to tapering, still not healed from anything. Whatever keeps me out of the ER at this point, really. Just bought methyl folate today.

 

How are you feeling on the methyl B12?

I guess it depends on the person, and it also depends on your start point. At the beginning of this I could only handle a small amount of methyl b12 and methy folate. Now I take mega doses: 3-7mgs of methyl b12 and 3-4mgs of methyl folate.

I couldn't handle B2 or B6 for a while too.

So I guess what I think is you start slow. Having one of the big dose methyl formulas might be a bit much at first. I think you start low and take each thing separately, slowly adding things in by how you are going.

If that doesn;t work there are ways your diet  can begin to help.

There is a link in my sig to a page I started when I was first thinking about this stuff. Some of it isn't useful but you may find something in there.

[[An...]]

I'll look, Smiff. I'll try the methyl folate, it's hard to differentiate symptoms. I guess I forgot to mention I'm recovering from an adrenal crisis from overuse of steroid shots in surgery and post, so recovery from adrenal insufficiency (NOT FATIGUE....OMG) plus benzo taper plus MTHFR and COMT...how do you sort it out? All I know is with drugs out of my system and no injuries I was always fairly normal in terms of health--but whenever anything went wrong, all the doctors always threw up their hands. Is THAT typical of MTHFR? Doctors swear it's not, we're just hysterical or something, but no one goes from totally healthy and athletic to bedridden from med reactions in cycles through their life like this normally, that is either the meds or some undiscovered disease. I'm with the former idea.

 

My folate did test completely normal with an MTHFR doctor, though he said it causes no other health problems except low levels, but noted that my blood has thickened......weird....

[[Mi...]]

MTHFR folks - please help!

I have my genetic tests back and I am a mess:

 

COMT V158M +/+

COMT H62H  +/+

VDR Bsm (Vitamin D) +/-

VDT Taw +/-

MTHFR C677T  +/-

MTHFR A1298C +/-

MTRR A66G +/-

MTFF K350A +/-

BHMT-02 +/+

BHMT-08 +/+

CBS C699T +/-

 

My psychologist has me on 30 mcg. hydroxy-B-12 (methyl B-12 makes me hyper) and 400 mcg. methylfolate. Now wants to start me on lithium - low, low dose. Have you ever taken lithium? It is to calm me down, but I'm worried about depression. I have always suffered from depression and it is really bad now. Especially if I sleep or get drowsy. I don't know if extra methylfolate will help or will rev up my anxiety. I have tried all antidepressants and, although prozac worked for a while, it gave me bad headaches and quit working after 10 years.

 

Please let me know if you have any suggestions. The depression is killing me.

 

I have blocked my PM, but maybe should reopen it.

 

thank  you,

MirandaJane