MTHFR gene mutation making W/D process worse?

[[Mi...]]

I see some of you are still struggling with methylfolate and B12 dosages, so I will repeat what works for me. See below:

 

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 Pharmax hydroxy-B12 and take three drops (each drop is 10 micrograms) every morning. 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

 

 

[[Th...]]

Mirandajane I read your post and something really stood out to me; depression lifted when pregnant. This is how my breakdown started and why I was put on all the meds I'm on. My pregnancy was awesome! I never felt better and I also was able to drop 1.5 mg Xanax in 2 weeks with no issues. The year I breast fed was amazing too. It was when I stopped that things got horrific.

 

My psychiatric nurse prescribed me a new drug from nestle which is Folate with the enzyme, but she never tested me first which you would think would be wise right? I only have basic knowledge and plan to get the test done. I never took the supplement (so called drug) because my insurance wouldn't cover it and it was 180 a month.

 

With my basic understanding I read that if you eat more foods with Folate, more is available to be used and can help. For now I have ordered this supplement.

 

https://www.amazon.com/Thorne-Research-5-MTHF-Supplement-Capsules/dp/B00FY8IQ7C/ref=sr_1_1?s=hpc&ie=UTF8&qid=1486499394&sr=1-1-spons&keywords=Folate&psc=1

 

Would this be helpful? I have yet to get the test but both me and my Dr. Are pretty confident I have it just based on my own history and family history ( depression and addiction all over the place ). In anyone's opinion should I try it? Maybe break off a small piece and work my way up like someone suggested.

 

My sxe are unrelenting and I rarely have windows and they last hours not days. Any advice would be very helpful. I hate the fact I have to add another supplement but if I have the gene I have no choice. Is Depline something you can take long term? I read some did not have any good effects.

 

Seems like a double edge sword, enzyme screws you up and the B vitamin can rev us more.

 

Can anyone give me a link to supplements they use if they have the mutation.

 

 

[[Mi...]]

You can take or eat folate all day long and it will NOT do you any good unless two things are in place: you are taking L-methylfolate daily, which penetrates the brain better than folate, and daily taking hydroxy-B12 to open the pathways to enable the methylfolate to work. Good luck.

 

MirandaJane

[[Al...]]

I dont know if I have a MTHFR mutation yet - My 23 should be done in a couple weeks.

 

I had a SpectraCell showing I am functionally deficient in B12 but blood tests showing I am >2000 due to my supplemtation.

 

When I take certain weak B complexes or a 5 hour energy it feels good. When I take a certain really strong B complexes it hurts me.

 

When I take sublingual cyanocobalamin it doesnt do anything. When I take sublingual methylcobalamin it irritates me.

 

What is going on?

[[Al...]]

Update: I just got my results and a I have MTFHR mutation as well as many others that cause low b12 and high homocysteine. I also have a MAO mutation that makes me very sensitive to drugs. All this explains my exxagerated withdrawal and experiences with such short and low dosages of drugs. I should never have tried an antidepressant and could be getting serotonin syndrome or something. It seems like sadly benzos (and maybe cannabis) are the only drugs for me - except when it comes time to withdrawal...

 

GET TESTED!

[[sh...]]

Following

[[Ma...]]

I dont know if I have a MTHFR mutation yet - My 23 should be done in a couple weeks.

 

I had a SpectraCell showing I am functionally deficient in B12 but blood tests showing I am >2000 due to my supplemtation.

 

When I take certain weak B complexes or a 5 hour energy it feels good. When I take a certain really strong B complexes it hurts me.

 

When I take sublingual cyanocobalamin it doesnt do anything. When I take sublingual methylcobalamin it irritates me.

 

What is going on?

 

No one knows what's going on because this is a new area of genetic testing that identifies a problem of 40% of population but has no scientific safe individualized solution. Any attempts to remedy this are hit and miss. Maybe you'll get lucky?? My attempt resulted in a breakdown and benzo withdrawal.

[[Th...]]

My Dr. wrote me a RX for the test Friday  I just have to see if insurance covers it, otherwise I will pay for it. When I get the results I will be back reading this thread over and over.

[[be...]]

Following

[[ho...]]

I am heterogeneous for both 677 and 1298. Compound. Taking methylated b vitamins for four days near killed me, my heart and blood pressure went through the roof almost had to go to er, withdrawal times a thousand  and had breakdown and my withdrawal has never been the same since. I've read 50% of the population have these mutations and don't even know it. However, if these mutations are "expressed", which I apparently did it affected my vit b level and my Homocysteine is 1 over. A geneticist said genes load the gun and lifestyle stress and diet pull the trigger. Even though I have these mutations my Cooper is fine, zinc is fine, biotin is fine. Mild low b12 but benzos do that anyway. There is still a lot to be learned about genetics and now it's all the rage people getting tested. I was prompted by my functional doctor to be tested for this because of family anxiety, sensitive to meds. I know I will NEVER put another vitamin in my body until I'm off this poison I'm on. Benzos lower vitamin levels anyway, B vitamins are not recommended during withdrawal anyway., and I'll worry about this when this is over. I learned the hard way and took a methylated B complex. Just my experience.

[[Ma...]]

Same nightmare happened to me. 

[[Be...]]

I like what that genetist said.  That genes load the gun and stress pulls the trigger.  Benzo's and drugs pulled the trigger for me, for sure.  My father was diagnosed with anxiety during family stress and I've got the bad gene myself.  I don't even need to get tested for those MTHFR genes.  I know I've got them.  I took B vitamins before and they revved me up badly. 

[[ho...]]

I like what that genetist said.  That genes load the gun and stress pulls the trigger.  Benzo's and drugs pulled the trigger for me, for sure.  My father was diagnosed with anxiety during family stress and I've got the bad gene myself.  I don't even need to get tested for those MTHFR genes.  I know I've got them.  I took B vitamins before and they revved me up badly.

yep i had about 8 years in my life where i just took visitril for anxiety. in came klonopin. i was eating horribly, staying up all night working and stressed to the max. stress, diet, lifestyle. i set myself up for it. oh well nothing i can do about it now until i get off this poison then im gonna worry about my B levels. which are probably lowered from the benzo anyway.

[[Al...]]

I have a couple mtftr mutations, a mao mutation, a comt mutation, a hmnt mutation, and more. My current theory is that I'm now OVERmethylayed due to too many methylated supplements and too much magnesium, fish oil, etc. I'm now trying to get off antihistamines and I'm avoiding methylated supplements and foods.

 

I'm taking niacin and vitamin b2. It seems to be working and I feel naturally sleepy for the first time in months. However, I just found out Niacin acts on benzo receptors. Crap! Is this not allowed?

[[Le...]]

I have a couple mtftr mutations, a mao mutation, a comt mutation, a hmnt mutation, and more. My current theory is that I'm now OVERmethylayed due to too many methylated supplements and too much magnesium, fish oil, etc. I'm now trying to get off antihistamines and I'm avoiding methylated supplements and foods.

 

I'm taking niacin and vitamin b2. It seems to be working and I feel naturally sleepy for the first time in months. However, I just found out Niacin acts on benzo receptors. Crap! Is this not allowed?

 

If your COMT +/+ your brain takes longer to breakdown dopamine, norepinephrine and adrenaline. According to Amy Yasko and others individuals with COMT+/+ have a reduced tolerance for methyl donors. 

[[Al...]]

No I'm sorry it's not comt++ but I do have maoa++ which should be similar?

 

I'm trying to demethylate and wondering if niacin is ok to take in wd as it's benzoish

[[Le...]]

I'm sorry AlienResourcss, I have no knowledge of the maoo++ mutation. Here's an article I found on benzo withdrawal and niacin that you may find of interest.

 

http://orthomolecular.org/resources/omns/v10n09.shtml

[[Al...]]

I read that article before and wondered about if it was actually possible that he reduced the time of his withdrawal. That would seem to bend the laws of benzos. It just just mean that his taper was shorter. I wonder if he pays for it later?

[[Le...]]

I didn't buy into the shortened withdrawal time either...or his methods for that matter... so why did I link that article?... I thought his explanation of niacin as it relates to benzo interesting.

[[Th...]]

You can take or eat folate all day long and it will NOT do you any good unless two things are in place: you are taking L-methylfolate daily, which penetrates the brain better than folate, and daily taking hydroxy-B12 to open the pathways to enable the methylfolate to work. Good luck.

 

MirandaJane

 

Sorry for the delayed response. Thank you, seems pretty straight forward. I can't wait to get the test done, procrastinating because I've had an infection for a month.

[[be...]]

Now I'm scared to take that test. If I'm only having some minor problems. do I need to?

[[ho...]]

I knows Bets I only got the two genes tested and bam heterogeneous for both. I can only imagine the rest. I had decided against getting the 23andme done until after this is over, however if it can tell me if I'm a slow or fast metabolizer of a certain benzo it could tell which way to go with this taper. But I really don't even want the results, got enough health anxiety at the moment.....  Ya know I wouldn't doubt that probably near everyone has these gene mutations expressed that's why we are part of the lucky percentage that have problems coming off benzos....  Just a thought

[[Al...]]

For me health anxiety is not knowing what is wrong with me and having to guess among a bunch of horrible rare diseases that I don't have.. 23andme provides useful information that can be acted on and could explain things as simple nutritional problems that can be easily corrected. It's too much data to interpret though. I'm going to pay a genetic doctor.

[[Th...]]

I knows Bets I only got the two genes tested and bam heterogeneous for both. I can only imagine the rest. I had decided against getting the 23andme done until after this is over, however if it can tell me if I'm a slow or fast metabolizer of a certain benzo it could tell which way to go with this taper. But I really don't even want the results, got enough health anxiety at the moment.....  Ya know I wouldn't doubt that probably near everyone has these gene mutations expressed that's why we are part of the lucky percentage that have problems coming off benzos....  Just a thought

 

I thought the exact same thing. I'm just getting the basic test too right now. I think I'm just going to let my symptoms determine how fast I take it. I often wonder if a post Benzo gene mutation or mutation from alcohol abuse could be possible for the reason why I'm having so much difficulty the 3rd time. Maybe I did some damage along the way.

[[ho...]]

For me health anxiety is not knowing what is wrong with me and having to guess among a bunch of horrible rare diseases that I don't have.. 23andme provides useful information that can be acted on and could explain things as simple nutritional problems that can be easily corrected. It's too much data to interpret though. I'm going to pay a genetic doctor.

I see what you mean. But even after extensive testing and hospital visits i still question if I have some disease. And I've had every test in the book. Everyday I have friends writing me saying "maybe it's so and so disease".  The rational part of my brain knows it's the benzos but can't control my thoughts. I'm glad I got my two genes tested however now every single thing I eat I'm terrified it has folic acid in it. So it has caused me more stress know I have these and they're expressed by my numbers, and I worry about liver detoxifying, it causes me more stress. But I know I needed to know. Vicious circle.