Another stab at talking about the MTHFR gene. Anyone have more info

Hey

 

There seems to be 2 types of people who are protracted on this board.

 

Those who took benzo's for a while and benefited from them at some point but hit tolerance and now have a long withdrawal.

 

And then their are those who never felt good on benzo's (or any AD's they were given) but tried to stabilize on them for few weeks or months but never got stable.

 

I am of the latter variety and it doesn't make sense to me how such short-term use could fry so many peoples CNS without a clear reason.

The former group obviously had built a dependance and physical addiction, so people like Bayliss and others can point clearly to a reason for their suffering.

 

But folks like me who were FINE a year ago, and who are now suffering many many months after weeks of use really has no logical explanation. I'm sorry but saying "benzo's don't care how long you were on" is not a good enough explanation.

 

I have become convinced that those of us who fit the latter description have some sort of mutation...be it the MTHFR liver enzyme gene or HPA Axis.

 

There are a decent amount of threads on these things in the past but does anyone suffering from unexplained short-term damage have any inforamtion or opinion on this?

Bumping this just because I can't believe no one has an opinion. I was inboxing with a short-term user who had the MTHFR test done and had a list of 'do not take' medications with benzo's and SSRI's on them. He's no longer on BB so I would like to chat with someone about this.

I am interested in this too because for about the past 20 years I have become sensitive to things.  I wonder about things like leaky gut.  Are you sensitive to caffeine?  I read about slow acetylaters and how a good indicator is your sensitivity to caffiene.

This is something that I've been interested in for a while as well. I've long suspected I had this mutation since B-vitamins, esp B12 (methylcobalamin) make me feel so much better. I recently got tested and found that I am homozygous for the MTHFR A1298C mutation. There are apparently two main mutations.. the MTHFR C677T and A1298C. From what I've read, the C677T is a bit worse. There appears to be a lot of controversy regarding this particular topic, and it seems that you get different answers depending on where you look.  I intend to do a bit more research in the future. For now I will just continue taking my methylcobalomin, and trying to get folate through natural sources (spinach, pinto beans). This is not advice, since I know that these supplements and foods tend to rev some people up.

 

As far as your categories, and which I fall under.. I'm not really sure tbh. I had used benzos intermittently for many years and never had any issues. They relaxed me (like they're supposed to), and actually made me more social. I never had much trouble stopping them in the past b/c I didn't use them every day. As far as antidepressants go, I've only had experiences with two. Anafranil (a tricyclic) was quite effective when I was a teenager and had some ocd/depression. I got off of it b/c I didn't like the side effects, and felt I no longer needed it. I don't recall having much trouble stopping it. The second was lexapro. I did not have a good experience on this med. BUT.. I started taking it towards the beginning of my reinstatement. I was still having benzo WD, and I only gave it like 4 or 5 days before dropping it. Who knows how I'd be feeling if I'd given it a full month. But even at a low dose, I felt it was starting to make things worse instead of better. It's complicated.. there are so many variables to factor in.

 

I'm not sure how much my experience adds to this discussion. I just wanted to throw in my two cents. I'd be interested to hear from others who have more knowledge on this topic..

Two things I forgot to mention.. First, I got my MTHFR results using ancestry.com, downloading the 'raw data', and then uploading it to genetic genie (just in case anybody is wondering). It was pretty cheap.

 

2nd thing.. I said I've only tried 2 antidepressants, but I forgot to mention that I was on tramadol for 8 years. It's really a partial opiate agonist (about as strong as codeine), but also has SNRI properties tucked in there as well. It made me feel great, even outside of the opiate effects which lasted 4-5 hours. I never realized it at the time, but I was generally in a much better mood and more motivated the next day, and I realize now that this was due to the SNRI properties (which are often downplayed, but in actuality are significantly stronger than reported). Getting of this med was a NIGHTMARE btw.. like stopping 8 years of codeine and effexor at the same time. I know this probably only muddies the waters in terms of how this relates to the MTHFR mutation, but just figured I'd through it in there.

 

Also.. currently taking a low dose of remeron (3.75mg), but this dose is likely too small to have any noticeable AD effects, and is only being used for sleep purposes.

re mthfr gene mutation…..its about  whether you've inherited it from one parent or the other or both.

It isn't something to fix.  It is something to understand  and work with to better your health.

 

+/+ means you've received the gene mutation from both parents and this is the one to look out for as it does influence you.    Homozygous 

+/- means you've rec'd the gene mutation from one parent (hence the +) but not the other (hence the -)    Heterogeneous

And -/- means you are fine; neither parent carries this mutation. 

You can have a +/+ mutation but perhaps the gene  hasn't been turned on and is not causing any issues.

Many people have many mutations  yet live healthy normal lives without problems.

I have the +/+ homozygous MTHFR A1298C mutation. Just wanted to follow this thread.

I have both C677T and A1298C mutations but I don't know if both parents, etc.

 

What is the first step for addressing this?  Insurance no longer pays for B12 injections.  I'll start anywhere. 

I have the AC1298C Gene ..t/t homogynous gene ..could others explain their symptoms and if taking anything for the gene ..Thank you

I'm glad this discussion was revived.

 

After some discussion here, I decided to get tested through 23&me.  I ran my results through Prometheus and then through Genetic Genie.

 

I do have variants of several of the SNP's associated with the MTHFR gene, (though can't remember which ones without booting up my computer.) I do know that I've got variants for both the C677t & A1289c - one is +/- and one is +/+... (along other SNP variants that might explain why I didn't respond as expected to various other medications in the past.)

 

Anyway, I am reading Ben Lynch's new book, Dirty Genes, and finding it to be very interesting/thought provoking.  Much of it is indeed resonating with me and I like his process - though I haven't started the dietary program that he proposes yet.  (I intend to once I finish it and get through my second/more comprehensive read...)

 

Admittedly, I'm still processing the volumes of info that I'm exposing myself to -- taking it slowly and trying to approach from a proactive, positive perspective.  The book is a gentler introduction to the scary things that these SNP variants can influence and I'm glad to have found it because the methods are very doable.  I can control my diet without a doctor's prescription...

 

I think if I had health phobias, the genetic testing would freak me out, but fortunately, that isn't one of my issues.  I'm more hopeful now (and feeling more validated), than I ever have been before.

 

I don't want to bring my results to my doctor because I don't trust that they won't become part of my medical records.  (Plus, I think I'm as capable as she is of interpreting the data.) 

 

It may be paranoia, but I think that having access to this type of data is too new.  The medical field is already too quick to assign labels and I think that this type of data could "justify" all sorts of pre-judgements that frankly, aren't studied well enough.  Reading through the Prometheus reports, I'm struck by how many of those studies were motivated by the pharmaceutical industry.  (It's good that these studies are happening, but I think that they're happening because the industry can profit from exploiting certain variants.)  There is both good and bad that can come from this...

 

I may explore finding someone who specializes in epigenetics in the future.  (I'm enjoying my own explorations for now...)

i am homogynous A1298C ++..What are your symptoms hun