MTHFR gene mutation making W/D process worse?

[[Sw...]]

ffml,

 

I finally got a MTHFR test, it suprisingly showed I do not have a mutation for C677T and A1298C.  I still have bad waves and feel symptomatic much of the time no matter whether I try supplements or not.  But I must add I was poly drugged from age 25 to age 53, with benzos being age 46 to 53 so I think that has alot to do with it.  My poor body is so confused at this point it I am lucky to be doing as well as I am.  I can at least function part of the day, but an overabundance of stimulation and stress is my downfall.  If a coccon were available I would sign up about 14 -16 hours a day. 

 

I got the results of my gut biome, It shows dysbiosis but thankfully minimal yeast and no parasites.  I need to change the gut flora but as of now everytime I try to add more than 20 billion probiotics per day world war 3 starts in my colon.  Not something I want to flare up.  The FMD and I agree it is something going on with the pancreas/gallbladder/ liver function that is preventing proper digestion and assemilation of what I take in.

 

I think we all have to find out where our bodies are out of balance and learn to make the appropriate adjustments.

 

Sweet pea

[[Ma...]]

When I found out I had these mthfr mutation I took 4 extremely small doses of Methy b  w l methyfolate.

 

It triggered the nightmare I am still in today and will be for the next year. It put be into tolerance and withdrawal from temazapam that I took for 25 years. I knew by day 5 I had fried my nervous system and I have not recovered. Read my signature

 

We do not know enough about this science and have no business messing with it.  "Practitioners are making alot of money off this.  STAY AWAY from these supplement.

[[fi...]]

Sweet Pea - Thank you for your reply.  I am so sorry you are suffering so much - Your reply though debunks my idea that methylation is part of the difficulty some of us have getting off - I'm sort of relieved to hear that part

 

I took have the gut dybosis - My husband is in perfect health and so I sent him to have the gut testing done - doesnt have relsults yet - but if his comes back as "dysbosis" then I'm done with this entire "healing your gut" thing. and even worrying about the genetic mutations.......I did feel like a million bucks when I was put on Nystatin or one of those for 10 days - AMAZING but placebo?? Who knows

 

MAGNOLIS, my friend - I agree - I know the mutation is real but the science to treat is lacking to say the least......

 

Anyone else NOT have MTHFR yet have a very difficult taper and post taper?? if you wish to share??

 

 

Hang in there Sweet Pea and thanks for the reply - I really appreciate it!

 

FIGHT

 

 

[[V1...]]

Thank you fightformylife I was the one who posted before you about being on Deplin. I did read that l methylfolate should be given with B12 and was wondering if the dosage of Deplin too high. This is all way confusing. Anyone know of a good reference explain it clearly. My Dr who prescribed the Deplin does listen when I bring him info ...may just be not informed as well. Trying to help the whole Clonzapam situation not make it worse Thanks!

[[Ma...]]

Deplin is 75 mg of lmethylfolate.  Huge dose. Largest dose available. I took the equivalent of 1/150th of that dose for 4 days and it fried my nervous symptons and thru me into withdrawal.

[[fi...]]

V1oletta - Do you feel ok on the Deplin? I was first given a methylated B12 drop to take for several weeks before 400mcg of Methylated Folate was added - like Magnolis - it was TERRIBLE! But my CBT therapist is taking both and feels great - it's so individual - there are lots of sites online that you can research.  There is that MTHFR.net or something - "Dr. Ben" (I think he is a chiropractor) - but the one I liked was Amy Yasko??

 

From what I'm reading - my reaction to methylated B is indicative of other methyl pathways blocked - so I would need to do the full panel with all my SNP;s - to try and work on it - but for now - I just read - bc like Magnolis - I just don't think its even close to being understood........

 

Having said that - Its all VERY interesting - hence my following.......

[[fi...]]

 

I too have the gut dybosis - My husband is in perfect health and so I sent him to have the gut testing done - doesnt have results yet - but if his comes back as "dysbosis" then I'm done with this entire "healing your gut" thing......and even worrying about the genetic mutations.......I did feel like a million bucks when I was put on Nystatin or one of those for 10 days - AMAZING but placebo?? Who knows

 

 

FIGHT

 

UPDATE!

 

So my husband got his Gut Testing back - and it was PERFECT - Dr said "I rarely see this"

 

My husband is in the most amazing shape and always has a ton of energy, never sick, etc.......My friends always say "You need to donate his brain to science when he goes" - I guess I'm a believer now in "gut health" - hmmmm

 

need to find those probiotics and eat a salad!

 

 

[[V1...]]

Fightformylife

I feel fine on the Deplin....that said though....neither better or worse. Thank you for the research references. It does sound complicated but good to try to understand it more .....especially if I am taking what sounds like a pretty potent "medical food" (as they call it) to try to treat it. Think my doctor just prescribed it because I was desperate to try something to fight the depression from Clonazapam tolerance (exercise only thing ever helped & injury makes exercise not good ......then he ran this genetic screen to see which meds potentially most effective  & It showed I did have the double mutation.

Really going to research this though. I've obviously had mutation my whole life & before Clonazapam didn't effect me so if no better or worse on Deplin....may just be that less is more.

[[Sm...]]

When I found out I had these mthfr mutation I took 4 extremely small doses of Methy b  w l methyfolate.

 

It triggered the nightmare I am still in today and will be for the next year. It put be into tolerance and withdrawal from temazapam that I took for 25 years. I knew by day 5 I had fried my nervous system and I have not recovered. Read my signature

 

We do not know enough about this science and have no business messing with it.  "Practitioners are making alot of money off this.  STAY AWAY from these supplement.

 

Hey Magnolis

 

Taking methyl folate really helped my tapering. I think you are right that the science isn't clear but I wouldn't put a blanket 'stay away' on anything. People should make their own minds up and if they are willing to try something under the full knowledge that things may get worse then I think they should. Ultimately you were in withdrawal from a benzo dependency. The methyl folate maybe pushed something over the edge but it was an edge you were going to fall off anyhow.

[[fi...]]

When I found out I had these mthfr mutation I took 4 extremely small doses of Methy b  w l methyfolate.

 

It triggered the nightmare I am still in today and will be for the next year. It put be into tolerance and withdrawal from temazapam that I took for 25 years. I knew by day 5 I had fried my nervous system and I have not recovered. Read my signature

 

We do not know enough about this science and have no business messing with it.  "Practitioners are making alot of money off this.  STAY AWAY from these supplement.

 

Hey Magnolis

 

Taking methyl folate really helped my tapering. I think you are right that the science isn't clear but I wouldn't put a blanket 'stay away' on anything. People should make their own minds up and if they are willing to try something under the full knowledge that things may get worse then I think they should. Ultimately you were in withdrawal from a benzo dependency. The methyl folate maybe pushed something over the edge but it was an edge you were going to fall off anyhow.

 

Smiff - I don't think Magnolis meant it as harsh as that - just that she had a horrific experience with it - I too don't do have some pretty bad side effects from methyl B - that being said I know many who do GREAT on it - the bottom line is that there are many mutations that have to do with Metylation I think - so just blindly trying to treat one pathway may end up hurting some - helping others - Glad its working for you - I SO wish it helped me.......but to no avail 

[[On...]]

I have this, double mutation, I'll find my reports and get back on here. All I remember is that I couldn't handle any B12. Tried Deplin but stopped, don't remember why. It gets so confusing and I am not a geneticist, chemist, pharmacist, or mathematician, which sure would help to get thru this taper!

[[fi...]]

It gets so confusing and I am not a geneticist, chemist, pharmacist, or mathematician, which sure would help to get thru this taper!

 

This is funny! Thanks for making me laugh!

[[On...]]

It gets so confusing and I am not a geneticist, chemist, pharmacist, or mathematician, which sure would help to get thru this taper!

 

This is funny! Thanks for making me laugh!

 

It's true! Like this:

 

MTHFR polymorphisms affecting homocysteine. You have a combination of 2 SNP variations in MTHFR which influence homocysteine levels. This is found in ~20% of people. 0.08% of people had a double copy of a mutation in one of the SNPs, and a single mutation in the other. . gs193 indicates double mutations in both sips, and people with this are believed to be critically impacted. *rs1801131 is at position 1298 *rs1801133 is at position 677

 

Have no idea what this means. I have other info, but I can't find right now.

[[fi...]]

It gets so confusing and I am not a geneticist, chemist, pharmacist, or mathematician, which sure would help to get thru this taper!

 

This is funny! Thanks for making me laugh!

 

It's true! Like this:

 

MTHFR polymorphisms affecting homocysteine. You have a combination of 2 SNP variations in MTHFR which influence homocysteine levels. This is found in ~20% of people. 0.08% of people had a double copy of a mutation in one of the SNPs, and a single mutation in the other. . gs193 indicates double mutations in both sips, and people with this are believed to be critically impacted. *rs1801131 is at position 1298 *rs1801133 is at position 677

 

Have no idea what this means. I have other info, but I can't find right now.

 

I do understand a little of the homocysteine issue - can be a risk for heart attacks or cardiac issues?? Bc I only have one copy I'm not at risk for that......Look up Amy Yasko's site - she has good info, I believe - I also believe that really you have to have your whole genome tested to have a CLUE of where to begin - she does that - or if you have a practitioner in your area that specializes in Methylation, they can order the test and interpret , etc

[[On...]]

Thanks! I will look into this more and check out her site. 

[[fi...]]

Keep me posted!

[[Sm...]]

When I found out I had these mthfr mutation I took 4 extremely small doses of Methy b  w l methyfolate.

 

It triggered the nightmare I am still in today and will be for the next year. It put be into tolerance and withdrawal from temazapam that I took for 25 years. I knew by day 5 I had fried my nervous system and I have not recovered. Read my signature

 

We do not know enough about this science and have no business messing with it.  "Practitioners are making alot of money off this.  STAY AWAY from these supplement.

 

Hey Magnolis

 

Taking methyl folate really helped my tapering. I think you are right that the science isn't clear but I wouldn't put a blanket 'stay away' on anything. People should make their own minds up and if they are willing to try something under the full knowledge that things may get worse then I think they should. Ultimately you were in withdrawal from a benzo dependency. The methyl folate maybe pushed something over the edge but it was an edge you were going to fall off anyhow.

 

Smiff - I don't think Magnolis meant it as harsh as that - just that she had a horrific experience with it - I too don't do have some pretty bad side effects from methyl B - that being said I know many who do GREAT on it - the bottom line is that there are many mutations that have to do with Metylation I think - so just blindly trying to treat one pathway may end up hurting some - helping others - Glad its working for you - I SO wish it helped me.......but to no avail 

 

agreed. If you mess around with this stuff that is really all you are doing: messing around and seeing if anything works. There isn't a hard science and this is all waayyy to complicated at this point. I used to handle methyl B12 great! I'd take it and calm down. Now I can only take hydroxy B12. Everything I take now intermittently because I don't have to be consistent anymore.

 

I'm doing great. I've been off a bit over a year and I'd say I'm pretty much healed I need to get around to doing my success story.

 

You'll get there with or without any methyl B vitamins. 

[[fi...]]

When I found out I had these mthfr mutation I took 4 extremely small doses of Methy b  w l methyfolate.

 

It triggered the nightmare I am still in today and will be for the next year. It put be into tolerance and withdrawal from temazapam that I took for 25 years. I knew by day 5 I had fried my nervous system and I have not recovered. Read my signature

 

We do not know enough about this science and have no business messing with it.  "Practitioners are making alot of money off this.  STAY AWAY from these supplement.

 

Hey Magnolis

 

Taking methyl folate really helped my tapering. I think you are right that the science isn't clear but I wouldn't put a blanket 'stay away' on anything. People should make their own minds up and if they are willing to try something under the full knowledge that things may get worse then I think they should. Ultimately you were in withdrawal from a benzo dependency. The methyl folate maybe pushed something over the edge but it was an edge you were going to fall off anyhow.

 

Smiff - I don't think Magnolis meant it as harsh as that - just that she had a horrific experience with it - I too don't do have some pretty bad side effects from methyl B - that being said I know many who do GREAT on it - the bottom line is that there are many mutations that have to do with Metylation I think - so just blindly trying to treat one pathway may end up hurting some - helping others - Glad its working for you - I SO wish it helped me.......but to no avail 

 

agreed. If you mess around with this stuff that is really all you are doing: messing around and seeing if anything works. There isn't a hard science and this is all waayyy to complicated at this point. I used to handle methyl B12 great! I'd take it and calm down. Now I can only take hydroxy B12. Everything I take now intermittently because I don't have to be consistent anymore.

 

I'm doing great. I've been off a bit over a year and I'd say I'm pretty much healed I need to get around to doing my success story.

 

You'll get there with or without any methyl B vitamins. 

 

Smiff. Thank you for this post!! Gives me hope! I'm looking forward to reading your success story! And I like you, believe it's just too new of a science.....sigh.

[[Ma...]]

This science is brand new .Practitioners or people self-medicating using l-methylfolate, deplin, methylated B12 unsupervised or un knowledgeable  can set themselves up for nervous system damage. It happened to me on extremely tiny doses. YOU are right, I was set up for withdrawal anyway and that pushed me over the edge but it's still is a sign these can be very powerful and potentially dangerous supplements and we do not know the science or have real understanding behind methylation. I was in a  Med Spa that did Botox and they had all of the methylation supplements and were dispensing them. 40% of the population have some form of these defective genes.  A lot of money is now being made from genetic testing , practitioners being trained  by people like "dr ben" who is not a doctor. They are preying on people who are desperate to relieve their depression and many end up and far worse shape. Add tapering off benzos to this process and $#@%^&. There are newer extensive genetic testing to determine what specific supplements need to be taken unless you have the time and money to do this I would be very very careful.

[[Fa...]]

I took this test several months ago. I was just a heterozygous for one of the genes, but something like 30-40% of the population is like me, so it doesn't really make a difference.

[[St...]]

Got this testing done through my functional medicine doctor and I had the A1298C and C677T mutations. I'm also low in B12. What next? Should I actually take anything? Are there further tests that will tell me what supplementation is safe?

[[fi...]]

Got this testing done through my functional medicine doctor and I had the A1298C and C677T mutations. I'm also low in B12. What next? Should I actually take anything? Are there further tests that will tell me what supplementation is safe?

 

Reading - lots of reading - Methyl B vitamins are the protocol but a lot of people have really bad reactions - read this whole thread - and there is a lot of info on the internet......If you really want to address it, I personally would get the entire genetic test done  - 23 and me or Amy Yasko (your functional md can probably do it) and start there before you just throw methyl B vitamins at it......but I had a bad time with them and if you are in the middle of a taper (I didnt read your signature) - I would def. proceed with caution - start out educating yourself before you do anything......just my 2 cents.......

[[Se...]]

I agree with "fight"

But if you are low in B12 you need to figure out how to get it addressed quickly, even if it means symptoms. B12 deficiency can cause permanent neurological damage.

Finding that out the hard way.

 

Selah

[[St...]]

I'm borderline low, I think. Low end of normal is what my doctor said. So what's the next step, then? The full panel from a place like 23 and Me?

[[Sa...]]

to add b12 even if it means symptoms?  I guess what those symptoms are and if you can tolerate it for how long?. 

What i'm saying is that i have 677 homozygous, v low b12 but any attempt to address it even in the many years past when young, ended up in ER. 

I would be v careful.  You know your body and history, proceed with caution.