MTHFR gene mutation making W/D process worse?

[[St...]]

In the past I feel like B12 revved me up, but I was also taking Wellbutrin and I was on testosterone shots at the time. And a fast taper. So I'm not sure.

[[fi...]]

In the past I feel like B12 revved me up, but I was also taking Wellbutrin and I was on testosterone shots at the time. And a fast taper. So I'm not sure.

 

Was your B12 tested by your regular Dr (normal blood test) or that "micro nutrient" test (more common with holistic practitioners)

[[St...]]

In the past I feel like B12 revved me up, but I was also taking Wellbutrin and I was on testosterone shots at the time. And a fast taper. So I'm not sure.

 

Was your B12 tested by your regular Dr (normal blood test) or that "micro nutrient" test (more common with holistic practitioners)

 

Tested by my new functional medicine doctor. Not sure what the test was.

[[fi...]]

In the past I feel like B12 revved me up, but I was also taking Wellbutrin and I was on testosterone shots at the time. And a fast taper. So I'm not sure.

 

Was your B12 tested by your regular Dr (normal blood test) or that "micro nutrient" test (more common with holistic practitioners)

 

Tested by my new functional medicine doctor. Not sure what the test was.

 

I had both - my Endocrinologists test showed my B12 and Folate were well within normal.  My "micro nutrient" test from the Naturopath showed borderline B12 deficiency - Supposedly the micro nutrient test looks for the nutrient in the cells as compared to serum blood levels - I haven't been able to find much in the way of information on the Internet as to the legitimacy of the micronutrient test. 

 

Anyway - Apparently to avoid "methyl trapping" (no clue what this means but apparently it's what supposedly causes the anxiety related to some peoples experience with the regular methyl B12)..... some are now using Adenosylcobalamin - or some such animal......I dunno - I haven't tried this one but the regular Meth B vitamins REALLY amp my symptoms up - I saw in your signature that you had a rough time the first time around (just like me) - I would tread very carefully with this.......

 

I've been eating foods that are high in B vitamins mostly - every once in awhile I take a B Complex. I open the capsule up and toss just about all of it - only take a smidgen - still I feel it - and I'm not even at the 1/2 way mark of my taper.......

 

You are so close - why jeopardize? From my understanding - the entire methylation puzzle takes time - you won't simply take a couple of vitamins and it cure your issues with the benzo.........But I'm certainly no Dr

[[St...]]

You are so close - why jeopardize? From my understanding - the entire methylation puzzle takes time - you won't simply take a couple of vitamins and it cure your issues with the benzo.........But I'm certainly no Dr

 

Well, that's why I'm asking. I don't want to jeopardize it. I want to investigate anything that might help, but above all do no harm.

[[fi...]]

You are so close - why jeopardize? From my understanding - the entire methylation puzzle takes time - you won't simply take a couple of vitamins and it cure your issues with the benzo.........But I'm certainly no Dr

 

Well, that's why I'm asking. I don't want to jeopardize it. I want to investigate anything that might help, but above all do no harm.

 

If it were me, I wouldnt go near it......too many have run into issues - and people healed from benzo withdrawal long before we knew anything about methylation....that's my 2 cents - for what it's worth - but others may feel differently......do you feel good now?

[[Mi...]]

Having b12 in your blood doesn't mean it's getting to your brain. About a year ago, while in withdrawal, I had my genes tested and started hydroxy-B12 and methylfolate - VERY low doses. It REALLY helped my depression and mental clarity. I don't think I'd have gotten this far in withdrawal without it. I've had depression all my life. I hope that after withdrawal I won't have as much. I've also found low doses on inositol to help, too. I got that info from buddies, and there is a thread on it.

 

MirandaJane

[[fi...]]

Having b12 in your blood doesn't mean it's getting to your brain. About a year ago, while in withdrawal, I had my genes tested and started hydroxy-B12 and methylfolate - VERY low doses. It REALLY helped my depression and mental clarity. I don't think I'd have gotten this far in withdrawal without it. I've had depression all my life. I hope that after withdrawal I won't have as much. I've also found low doses on inositol to help, too. I got that info from buddies, and there is a thread on it.

 

MirandaJane

 

I so wish I had experienced this but it just made my anxiety so much worse - What does Insitol do?

[[Mi...]]

Inositol reduces depression. It keeps me awake so I don't take it at night, but some buddies sleep better with it. I take about 300 mg. powder twice per day - morning and early afternoon. I need to increase a little. Most people take 1-18 grams.

 

MirandaJane

[[Bh...]]

Well I started the b12 yesterday...probably way too much...about 1000mg. Definitely reved up my anxiety.  However, my pins and needles/foot pain went away completely.  I also was more awake and alert.  I slept 2-4 hour chunks...not bad. I have muscle soreness which could be from withdrawal or the b12.

 

As a result, I took much less this morning.  I also ate some organic spring mix lettuce for the natural form of folate. Hopefully this will help me out. I definitely know I need vitamin b12 at the very least.  My blood levels are 300...200 or less is considered deficient.  In  the past I would always experience pins and needles from the lack of b12 (anything less than 400 for me). Now it's magnified due to the withdrawal.

 

Either way, I'll be taking small amounts of b12 daily until my body gets used to it. I used to take 2500mg of b12 daily before withdrawal. I would eventually like to add 100mg of methylfolate next month after Christmas. I'll stick with the folate filled spring mix until then.

 

The temporary increase in anxiety and muscle pain is better then the constant painful prickling sensations, akathisia and extreme cog fog. I'll keep everyone posted on my progress.  Oh, and I'm homozygous positive for the C677t gene.

[[we...]]

Benzohell30,

I am homozygous c677t .

I understand your concerns and yes there is scientific proof that these mutations have an effect on gaba and especially withdrawal.

My own personal taper seems to be about the norm so far but I have to admit that it really does wreak havoc with my brain and curling up into a corner in a dark room is a regular occurrence but most people's journey from benzo withdrawal  seems to be very similar.

I used to take my b12 and folate in tablet form but it made my symptoms worse so I now get all my nutrients from my diet which has to be tight and again so does most people's.

I am recovering slowly as a lot of people do.

I have wrecked my head thinking and researched everything wrt gene mutation since finding out 4 years ago but I have come to the conclusion that a healthy diet which includes b12 and folate helps just as much.

There are millions of different scenarios and genes with which given the exact formula may cause symptoms to be worse I don't believe that the c677t or 1298c mutations given how many other genes we have in our bodies have such a dramatic effect as we think .

Up to 20 % of the population have homozygous on these genes alone and live very normal happy and healthy lifes.

I would personally try not to focus on it so much and just accept that although it may be slower and a little harder for us we will eventually heal like most do.

Good luck with your journey ahead my friend.

[[Ma...]]

Wee,

I agree with you completely.  I also tried to "fix" this defective gene.My signature explains.  Will never mess with this again. In the end, the lmethylfolate and b caused tolerance and wd symptons from temazapam that I took for 25 years.  It was the catalyst to get me off.  I had no choice. Now I'm in this process.  Hard.  But life benzo free is something I never thought possible.  3 months. Before this crash. I said" I will probably be on temaz for the rest of my life".

[[wa...]]

Hello,

 

I am here to share my experience.  I have the MTHFR mutation and am homozygous for the C677t allele.  I have tried to supplement with b vitamins and my anxiety goes through the roof.  I have taken methylfolate on occasion but that can be stimulating as well.  Regardless of my mutation I still have to taper from this benzo which has robbed me of much of my life for the last year and I still have a ways to go.  I was reading some info on a site I found regarding over and under methylation that I wanted to share.  I am in no way endorsing the practitioner or info just wanted to put it out there as it was interesting especially the part involving benzodiazipines.  If allowed here is the link:http://www.judytsafrirmd.com/histamine-methylation-and-mthfr/  I have also included an excerpt for you to read if interested:

 

 

"Histamine, Methylation and MTHFR"

 

"In October 2014 I attended a training for physicians offered by the Walsh Research Institute, where I learned about the use of vitamins and minerals to treat psychiatric conditions. Based upon the teaching,  I ordered laboratory studies on myself, as well as almost all of the patients in my practice, and prescribed protocols to correct the imbalances revealed by blood work and urinalysis. Now, eight months later, I am starting to see the results, and am very impressed. I feel better than I ever have, and a number of my patients are also feeling remarkably well since being on the protocols for three or four months. Now we will begin a slow taper of the psychotropic medications that some of them have been taking for years, and determine if it is possible to stop them or at least to reduce the dosages. That is our goal.

 

In my last blog post, I wrote about a condition called pyroluria that is correlated with many psychiatric symptoms. This post will address two other imbalances that Dr. Walsh taught me about, over and undermethylation, both of which cause a great deal of suffering.

 

Methylation is a vital foundational biochemical process in the body, involved with the detoxification of heavy metals, regulation of gene expression and protein function, and central to the synthesis of neurotransmitters, the chemical messengers which mediate mental and emotional states. Imbalances in methylation status result from genetic defects in the enzymes which regulate the process of methylation. In the past few years there has been a great deal of interest in genetic testing, and in particular, the role of the MTHFR gene. A genetic defect of the MTHFR gene can result in a malfunctioning MTHFR enzyme, which can affect methylation.

 

There is a common misconception, however, that the mere presence of an MTHFR mutation is synonymous with a methylation defect. This is by no means necessarily the case, even if an individual is homozygous for the gene. The presence of the defective gene does not necessarily translate into a functional defect. In fact, the recent wide spread indiscriminate prescription of methylfolate to compensate for the genetic mutation is not only misguided, but can actually make low serotonin people who are undermethylated not only feel much worse, but also increase their risk of developing cancer.

 

In order to determine the actual functional methylation status in the body, whole blood histamine must be measured. Histamine levels correlate with the functionality of the methylation process. Histamine and methyl are inversely related to one another. That is to say, if whole blood histamine is low, the individual  will be overmethylated and if it is high, they will be undermethylated. The protocols to treat the two conditions are different.

 

Some symptoms and traits of undermethylation:

 

Chronic depression, history of perfectionism, seasonal allergies, history of oppositional defiance, high libido, adverse reaction to benzodiazepines and folic acid, good response to SSRI’s and anti-histamines, sparse body hair, suicidal tendencies, addictiveness, phobias, denial of illness, obsessive compulsive tendencies, ritualistic behaviors, strong willed, self-motivated during school years, history of competitiveness in sports, strong willed, calm demeanor but high inner tension, family history of high accomplishment, frequent headaches, slenderness, dietary inflexibility, terse speech

 

Some symptoms and traits of overmethylation:

 

High anxiety/panic, hyperactivity, rapid speech, low libido, religiosity, tendency to be overweight, nervous legs, pacing, adverse reaction to SSRI’s and SAMe, improvement with benzodiazepines, dry eyes and mouth, low motivation during school years, depression, self mutilation, sleep disorder, tinnitus, hirsutism, food/chemical sensitivities, artistic or musical ability, copper overload, estrogen and antihistamine intolerance, absence of seasonal allergies

 

As I have gained more experience asking patients about their symptoms, I have begun often to be able to accurately predict what the lab studies will reveal. No one has all of the symptoms, and sometimes it can be confusing, as a person will have symptoms or traits of both conditions.

 

Methylation defects take three to four months to correct, and longer in people with the blood type A. The protocols do not correct the genetic defect, and thus need to be taken indefinitely. I was interested to learn that many foods typically considered super healthy, such as leafy greens and avocados, and other foods that are high in folate are not beneficial for low serotonin undermethylators. Multi-vitamins, which typically contain folic acid, are also harmful to those who are undermethylated.

 

If you would like to learn more about why the mere presence of an MTHFR mutation does not necessarily correlate with actual functional methylation status in the body, the following lecture by Dr. Albert Mensah provides a more thorough explanation."

 

 

[[fi...]]

Hello,

 

I am here to share my experience.  I have the MTHFR mutation and am homozygous for the C677t allele.  I have tried to supplement with b vitamins and my anxiety goes through the roof.  I have taken methylfolate on occasion but that can be stimulating as well.  Regardless of my mutation I still have to taper from this benzo which has robbed me of much of my life for the last year and I still have a ways to go.  I was reading some info on a site I found regarding over and under methylation that I wanted to share.  I am in no way endorsing the practitioner or info just wanted to put it out there as it was interesting especially the part involving benzodiazipines.  If allowed here is the link:http://www.judytsafrirmd.com/histamine-methylation-and-mthfr/  I have also included an excerpt for you to read if interested:

 

 

"Histamine, Methylation and MTHFR"

 

"In October 2014 I attended a training for physicians offered by the Walsh Research Institute, where I learned about the use of vitamins and minerals to treat psychiatric conditions. Based upon the teaching,  I ordered laboratory studies on myself, as well as almost all of the patients in my practice, and prescribed protocols to correct the imbalances revealed by blood work and urinalysis. Now, eight months later, I am starting to see the results, and am very impressed. I feel better than I ever have, and a number of my patients are also feeling remarkably well since being on the protocols for three or four months. Now we will begin a slow taper of the psychotropic medications that some of them have been taking for years, and determine if it is possible to stop them or at least to reduce the dosages. That is our goal.

 

In my last blog post, I wrote about a condition called pyroluria that is correlated with many psychiatric symptoms. This post will address two other imbalances that Dr. Walsh taught me about, over and undermethylation, both of which cause a great deal of suffering.

 

Methylation is a vital foundational biochemical process in the body, involved with the detoxification of heavy metals, regulation of gene expression and protein function, and central to the synthesis of neurotransmitters, the chemical messengers which mediate mental and emotional states. Imbalances in methylation status result from genetic defects in the enzymes which regulate the process of methylation. In the past few years there has been a great deal of interest in genetic testing, and in particular, the role of the MTHFR gene. A genetic defect of the MTHFR gene can result in a malfunctioning MTHFR enzyme, which can affect methylation.

 

There is a common misconception, however, that the mere presence of an MTHFR mutation is synonymous with a methylation defect. This is by no means necessarily the case, even if an individual is homozygous for the gene. The presence of the defective gene does not necessarily translate into a functional defect. In fact, the recent wide spread indiscriminate prescription of methylfolate to compensate for the genetic mutation is not only misguided, but can actually make low serotonin people who are undermethylated not only feel much worse, but also increase their risk of developing cancer.

 

In order to determine the actual functional methylation status in the body, whole blood histamine must be measured. Histamine levels correlate with the functionality of the methylation process. Histamine and methyl are inversely related to one another. That is to say, if whole blood histamine is low, the individual  will be overmethylated and if it is high, they will be undermethylated. The protocols to treat the two conditions are different.

 

Some symptoms and traits of undermethylation:

 

Chronic depression, history of perfectionism, seasonal allergies, history of oppositional defiance, high libido, adverse reaction to benzodiazepines and folic acid, good response to SSRI’s and anti-histamines, sparse body hair, suicidal tendencies, addictiveness, phobias, denial of illness, obsessive compulsive tendencies, ritualistic behaviors, strong willed, self-motivated during school years, history of competitiveness in sports, strong willed, calm demeanor but high inner tension, family history of high accomplishment, frequent headaches, slenderness, dietary inflexibility, terse speech

 

Some symptoms and traits of overmethylation:

 

High anxiety/panic, hyperactivity, rapid speech, low libido, religiosity, tendency to be overweight, nervous legs, pacing, adverse reaction to SSRI’s and SAMe, improvement with benzodiazepines, dry eyes and mouth, low motivation during school years, depression, self mutilation, sleep disorder, tinnitus, hirsutism, food/chemical sensitivities, artistic or musical ability, copper overload, estrogen and antihistamine intolerance, absence of seasonal allergies

 

As I have gained more experience asking patients about their symptoms, I have begun often to be able to accurately predict what the lab studies will reveal. No one has all of the symptoms, and sometimes it can be confusing, as a person will have symptoms or traits of both conditions.

 

Methylation defects take three to four months to correct, and longer in people with the blood type A. The protocols do not correct the genetic defect, and thus need to be taken indefinitely. I was interested to learn that many foods typically considered super healthy, such as leafy greens and avocados, and other foods that are high in folate are not beneficial for low serotonin undermethylators. Multi-vitamins, which typically contain folic acid, are also harmful to those who are undermethylated.

 

If you would like to learn more about why the mere presence of an MTHFR mutation does not necessarily correlate with actual functional methylation status in the body, the following lecture by Dr. Albert Mensah provides a more thorough explanation."

 

so if you think you might be over methylating, what is the protocol? and what about other mutations that might interfere - I've read of several - one that is implicated in motion sickness (now i can't remember which one it was COM maybe?)  - i have yet to have the whole test done though .......

[[wa...]]

Fight for my life,

 

I was listening to a podcast today by Dr. William Walsh, a leading expert in biochemistry and he was saying that the 23 and me and other genetic tests are not the approaches he uses given the lack of correlation of having the mutation and whether it is affecting one or not.  He recommends certain blood and urine tests that inversely would indicate if you are over or under methylating.  But I found another great article  that goes more in depth and relates to Dr. Walsh's research.  Like I said before I am not endorsing his info or that of others but it is still interesting.  Dr. Walsh has worked with the mentally ill on death row and others to try to understand epigenetics and human biochemistry.  So if you want to know more you can look him up.  But here is another link explaining the tests and more information in general: https://www.truevitality.com.au/articles/understanding-methylation-underover-methylation/ 

 

The article to the link I provided is long so I will not copy and paste here.  I walk beside you in this journey.  We need each other in order to survive this strange trip.  Take care.

 

Warrior

[[On...]]

I am hoping to keep this thread going. I need to understand all this in simple terms. I am not understanding much of what has been written here. I have this condition and I think it is impacting my taper. Does anyone know of a doctor that knows how to address this in the San Francisco Bay area? Also is histamine intolerance related to MTHFR? My IgE's are around 5000 now (normal 1-100).

[[Ma...]]

Very few legitimate health professionals, much less uneducated people understand this gene mutation. The damage that can be done to the very same receptors,especially glutamate, that you are trying to heal,can have serious detrimental ramifications.

 

My experience in June is an example of this. In a genetic test ,I was given this information and quickly jumped to unfounded conclusions ,assumed that treating this disorder with l-methylfolate was the answer. I got all of my information from the website of a non MD from Mthfr.net. I knew I was sensitive so I proceeded to take extremely tiny doses of a combo of l-methylfolate and methyl B. From Thorne. I took a 1/2 of a mcg. NOT mg dose. This is tiny. After 4 days I could no longer sleep ,I had intense migraine headaches,sever heart palps and anxiety. I thought was having a nervous breakdown .In reality  this suplementation collided with my dependency on the benzo Temazepam. All receptors were in hyper excite tivity and I descended into a living hell for three months before I realized what my real problem was and what it had become. I was already reaching tolerance and this pushed me over the edge . Taking 30 mg sometimes more I could not sleep more than 2.  2 hrs shifts.

 

There seems to be one main professional Dr in the United States ,in the chicago-based area ,who is well-versed in this. Beware of others who probably took a weekend course and are"prescibing" these . please do not self experiment with these supplements. It can cause serious damage to your cns. Up to 40 % of the population have 1 or more copies of the defective Mthfr genes. METHYLATION is serious stuff. Once you mess with this in addition to trying to recover from the damage done by benzos you may screw yourself .

[[On...]]

Thanks Magnolis for the heads up. I sure have to understand this more before I try anything new. And at this point, I can't risk trying any new medication, supplement, or whatever in worry that it could make the taper more difficult.

[[Be...]]

I am hoping to keep this thread going. I need to understand all this in simple terms. I am not understanding much of what has been written here. I have this condition and I think it is impacting my taper. Does anyone know of a doctor that knows how to address this in the San Francisco Bay area? Also is histamine intolerance related to MTHFR? My IgE's are around 5000 now (normal 1-100).

 

IgE's are antibodies formed in your body in response to a foreign antigen or "invader" in your system such as a parasite or infection.  It could also be autoantibodies to damaged cells in the body, I believe.  Are you diagnosed with another autoimmune disease, such as, Lupus? 

[[On...]]

What's IgE?

 

Here's the definition from the American Academy of Allergy, Asthma, and Immunology web site:

 

Immunoglobulin E (IgE) are antibodies produced by the immune system. If you have an allergy, your immune system overreacts to an allergen by producing antibodies called Immunoglobulin E (IgE). These antibodies travel to cells that release chemicals, causing an allergic reaction.

 

For me when my levels are high, it means I am very, very tired with a swollen face, throat, and nasal passages, a lot of anxiety, itchy, tinnitus, sometimes welts, and asthma symptoms like wheezing, shortness of breath. It feels like your are sitting in a field of weeds.

 

I am guessing for most, if you are allergic to let's say ragweed, your IgE goes up a little and it's no big deal and you take Benadryl or whatever and you are better. IgE is a blood test from doc. Most levels are between 1-100.

 

For some, their IgE levels can get dangerously elevated, I don't have that.

 

I have allergic reactions to most everything (mold, dust, trees, cats, etc.) including soy, dairy, and ink on newspaper and books. I react to most foods but can eat peanuts for some reason. Go figure.

 

One wrong food and my asthma and taper symptoms dramatically increase. I have only had one anaphylactic episode and that was from an antibiotic so I am lucky it's not that bad.

 

It has affected my taper and I have to face it and be more vigilant about what I eat.

[[On...]]

 

Are you diagnosed with another autoimmune disease, such as, Lupus?

 

Never been diagnosed with Lupus, I wonder sometimes though. I should look into it again, but I just can't handle anymore doctor's appointments, no money left after going through 25 asthma meds in the past five years that all made my asthma symptoms worse. Sometimes I wonder if the reactions I had to the asthma meds (severe anxiety, flu like symptoms, joint pain) were due to being in inter dose withdrawal from the Clonazepam (which I never knew about at the time). I don't know.

 

I read once, but I don't know if it is true, that benzos help reduce histamine levels and if that could be one reason my allergy symptoms and IgE are higher.

[[Be...]]

Oneday, did your IgE levels go up since you've been having withdrawal symptoms?  I just read a study that said elevated IgE levels are also found in people with Lupus, an autoimmune disease.  It can be elevated for other reasons than just allergies.  I'm now sensitive to all odors, etc, except bleach.  I like the smell of bleach and it calms me down for some reason.  I wonder if my IgE levels are high now?  I was diagnosed with Lupus in 2012.  Also have Hypothyroidism. 

[[Be...]]

A doc can do an ANA, anti-nuclear antibody, test to see if you have Lupus or another autoimmune disease.  I don't know if it would be positive with allergies? 

[[On...]]

Oneday, did your IgE levels go up since you've been having withdrawal symptoms?  I just read a study that said elevated IgE levels are also found in people with Lupus, an autoimmune disease.  It can be elevated for other reasons than just allergies.  I'm now sensitive to all odors, etc, except bleach.  I like the smell of bleach and it calms me down for some reason.  I wonder if my IgE levels are high now?  I was diagnosed with Lupus in 2012.  Also have Hypothyroidism.

 

I just looked it up and I had an ANA two years ago and it was negative. My IgE levels were high in October, but I haven't had them checked since then. I'll have to pay more attention to it this year because last year, when I started the taper, I didn't understand anything about tapers and now I want to learn everything I can so I make good progress this year.

 

I am hypothyroid too (what fun) and the doc wants to increase my Synthroid, but I don't want to because last time they did that it made me more anxious.

[[Be...]]

Oneday, did your IgE levels go up since you've been having withdrawal symptoms?  I just read a study that said elevated IgE levels are also found in people with Lupus, an autoimmune disease.  It can be elevated for other reasons than just allergies.  I'm now sensitive to all odors, etc, except bleach.  I like the smell of bleach and it calms me down for some reason.  I wonder if my IgE levels are high now?  I was diagnosed with Lupus in 2012.  Also have Hypothyroidism.

 

I just looked it up and I had an ANA two years ago and it was negative. My IgE levels were high in October, but I haven't had them checked since then. I'll have to pay more attention to it this year because last year, when I started the taper, I didn't understand anything about tapers and now I want to learn everything I can so I make good progress this year.

 

I am hypothyroid too (what fun) and the doc wants to increase my Synthroid, but I don't want to because last time they did that it made me more anxious.

 

I take dessicated pig thyroid called Nature-throid.  It's like Armour thyroid.  I couldn't take Synthroid, it made me nervous.  This natural thyroid doesn't do that.