I had read about testing the MTHFR mutations c677T and a1298c. There appears to be a link to anxiety and patients with Fibromyalgia have also responded well to being treated with methylfolate and methylcobalamin. There are also other links to many other conditions.
Has anyone been tested for this genome mutation? We have asked our Doctor to perform the test on our Daughter.
People with the mutation do not respond well to SSRI's.
This is the article in full, deals mainly with anxiety but if you read it in full there is a nod to Fibro amongst others. Interesting thing is that this Doctor is treating around 100 patients with various conditions.
I haven't been tested for this and have never heard anything about this before. I don't have issues with anxiety myself but I know many others here face this challenge as well. Has her doctor run the test yet? Please let us know of any new information you find out as you and your daughter continue with testing and if the results lead to any help for her.
I have this mutation. I’ve been on one SSRI or another for 3 decades and been helped by all of them. But effectiveness declines and after certain level have to change drugs. Methylated folate can take care of problem but it can be hard to tolerate at first. I will write more extensively later when I have more time. My homocysteine was 5.6 and my Dr was concerned when serum folate was high – led to test.
My parents’ homocys was 17+ (whatever the units are) but their Dr barely mentioned. Mom’s new Dr horrified when he learned that she had never been told to take methyl form.
Advise start at around 200 mg tho you may still get very nauseated.Dr prescribed 1000 mg for me and it tore me up. There is a lot of info on MTHR online, LOTS.
I just read the article and it reminded me that many who don’t tolerate methyl folate do ok with SAMe. I am one of those, and take daily. Helps energy and seems to boost effect of anti depressant, which is currently generic of Effexor that I’m maxed out on, at least from financial perspective. In USA, SAMe and methyl folate are available OTC.
Emily is waiting to start on Methyl folate and Methylated B-12, She will start this week hopefully and we shall give it around two months. In Australia the Gene test was a medicare excess of $50 and the meds are are prescription around $50.
We have had to wean her off Metahdone which was tried and was for Her a horrendous exprience.
\We dont know if this will work but it has to be worth a try. I will keep you all posted on progress.
This is really interesting. I also have MTHFR mutations in both genes. Wonder if there’s any connection between this and the erythromelalgia which plagues our lives?
I’ve been treated with Deplin & for the first time in my life have been freed from intermittent depression that’s haunted me since childhood.
Hi I have been tested and have learned to have 2 copies (homozygous) for c677T. I am a highly anxious and depressed person, but respond to SSRI’s (though effects kinda plateau after a while … but still something).
My homocysteine is normal (tested 2x in past year)
My derm/rheum said I might have trouble metabolizing sex hormones as consequence, and suggested I try a DIM supplement. My EM started with a bang 2 weeks after I got off of birth control (if I look at the dates, when my body started to make its own hormones).
Going BACK ON birth control in hopes to “undo” everything however, slowly made me worse and worse over time!
My EM onset also coincided with a lot of migraines and high blood pressure (I shouldn’t really have high bp for my age/weight)
I guess good to know as more info / research is done on MTHFR mutations. I’d be interested if anyone else has been tested or knows more, etc.
Well, it figures. I have something really pertinent to say re methylene tetra hydrofolate reductase. Hah! I did it and I’m two years late. MTHFR. My rock star doctor did a genetic test on me as I was having anxiety attacks and have had intermittent depressions since childhood. She put me on l-methylfolate 15 mg and I haven’t had a single bout of depression in over 3 years. I did a 23&me genetic test. All the raw data it there for us to explore. The gene for EM is the SCN9A gene. Is searched and there it was with anomalies all down it. Just for kicks I plugged in MTHFR and the same thing. We live in amazing times. Good luck and stay cool.
For me it was such a feeling of relief/validation to see that my tendencies for perfectionism, depression, anxiety, OCD, etc etc were literally written into my DNA. I was surprised, actually, how powerful that feeling was.
I’m going to talk to my doc about high dose methyl folate.
Hi Satochan Thanks for posting another message, since I missed the first!
I’m doing more of the same. Very sloooow to shift my meds one way or another, and to find out what works/doesn’t work… I’ve been on clonidine for the longest time (antihypertensive, constricts periphery) and it’s taking me ages to taper off it. It’s known for rebound anxiety/hypertension during dose decreases. I was originally put on it for the EM. It took me so long to realize it was making the pain worse every evening. It sort of would help, but only in the short term. Now that I am almost off of it, the pain has markedly decreased (though it’s still there!). But it’s not fun to taper off of.
I read in another thread that you are trialling mexiletine? How is that going?
I’ve started deplin (l methyl folate) and I do think it is helping my mood a bit.
I’m having a tough time dealing with how isolating this disease (or any rare disease I guess) can be. Not only the physical aspect of it – I will burn up for hours every time I leave my home or talk to anyone – but just being present and focusing on what others are saying. I think it’s very important to try and maintain connections with friends/family, so I do that even if I have to bring ice packs or what not with me. but I feel a little disoriented when we talk about mundane things, and maybe they ask me about my condition, or maybe not. They see the red, but they don’t see the pain, and of course it is very difficult for anyone not in this situation to understand. I feel like I’m whining and that’s not my intention but it’s just disorienting I guess.
I hope you are staying cool yourself!! Thank you so much for checking in
Cat
Dearest Cat, You are NOT whining!!! You are in PAIN. I’ve tried to explain the pain to others, to imagine someone pouring boiling water into my cupped hands. My pain is spreading up my arms, down my backside to the arches in my feet. The hands are the worst.
We all are so different and are having some success with different approaches. My protocol is Lyrica, Mexilitine, CBD oil and I’ve just added a low dose of cymbalta.
Please don’t EVER feel less than, because you’re a pain patient. I hope medical MJ is legalized in TX before I croak.
Hope you’re having a day you can deal with.
Patricia aka Satochan.
Satochan, I’m seeing a doctor at the local teaching hospital in early April and was going to bring up trying Mexilitine. Wondering how much you take and how you titrated to that dose. I hear you have to work up to it. That was one nice thing about Lyrica. You could get to a high dose in a couple of weeks.
_Hi G, I started off with the lidocaine IV. it’s nearly impossible to find a knowledgeable doc who does it. Mine is about 85 and I live in terror that he’s going to croak before I do. Haven’t been bad enough in the last 6 months to need it.
I started right off with 150mg morning and night of Mexilitine. Who knows if all this stuff really works, but I’m afraid to titrate off of it. Cut the Lyrica down from150 mg a.m. & p.m and the brain fog is much diminished; but I am starting to have migraines again. Sometimes, ya just caint win.
I do hope the Mex it works for you. _
Patricia
Lyrica didn’t hit me from a brain fog perspective. My short term memory sucks, but I’m 58 so could just be age. Been on Lyrica for 11 years since this all started. Mexilitine is my next option and will discuss with doc in April when I see him. Hope your migraines get better. EM is bad enough.
_Dear Ms. Wadley,
Ha ha just being funny. Added cymbalta to my morning dose of of Lyrica. I had to cut the capsule in half for a couple of weeks because the full dose had me burning again. I had to go back up to 150mg Lyrica am & pm because the burning would start a little after noon. So what if I can’t find words or something I just had in my hand or the name of my favorite movie for 30 years. At least I’m not on fire at a maximum burn anymore and the migraines are gone again. Oh well…
_
Thanks for posting another message, since I missed the first!