The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Consider this before you go down the MTHFR self-treatment rabbit hole

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by bigmillz, Nov 13, 2017 at 11:26 PM.

  1. bigmillz

    bigmillz Senior Member

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    I've been on here for quite some time, following a modified version of Freddd's protocol for the past few years. At first, it brought me a ton of relief, and it felt like nothing I'd ever felt before. I'm here to tell you, before you take this path, you may wish to consider your options before taking things into your own hands.

    I'm not doubting that the information here has helped many people, nor am I doubting the caring mindset and devotion that everyone has put forward. It just may or may not be for you, and there may be some consequences.

    For close to 2 years, I was on more or less 6mg of methylfolate every day, 5mg of methyl B12, L-carnitine, and at times, 18mg of FMN (B2). Let me tell you, having an MAOA mutation as well, it felt GREAT. It was like being on amphetamines, without the side effects, 24/7. Of course, a tolerance seemed to develop. Along with anxiety, irritability, and other things. I took a break.

    During my 2 month break, I was extremely depressed, tired, dysfunctional, and really just not going anywhere. So I ended it and got back to trying new combinations, eventually reaching 10mg of methylfolate, and feeling like superman. For a month or two, then it wasn't enough, yet I was even more irritable.

    I couldn't crack the puzzle. It was like I was getting somewhere, more energy, feeling more alive, and more able to do things, yet I was driving people away, making poorer choices, and in some ways, feeling worse. Not to mention planning my life around my supplements. Going on a date? Pop an extra 2mg of methylfolate. Shit, took too much, now I'm off the wall (but hypersexual, sweet!).

    Fast forward to summer this year. My doctor during an average appointment yelled at me for not seeing a sleep specialist with the issues I was having. She said she wouldn't see me again until I did.

    Well, one 18 hour sleep study (PSG & MSLT) later, and another sleep specialist (the first guy just wanted to give me provigil for the rest of my life), and a few months of fighting my insurance later, I'm back with a narcolepsy diagnosis, taking Xyrem every night and feeling the best I've ever felt.

    Except for one thing. I've been mostly off the B vitamins for a while, only taking them here and there. But a lot of aspects of my life are still off. If I don't take B vitamins for a while, I start getting depressed, slow, and just generally down. It's almost like withdrawal, and feels not unlike when I came off of 3 years of adderall 10 years ago (okay, way milder, but similar).

    I took a B complex the past few days for the first time in a while and low and behold, I'm over talking, anxious, a little irritable, and full of energy. Wasn't worth it.

    So my message here is to consider if you want to take this path. I still doubt doctors like crazy, but I've found some way better ones in my new home (NYC) than I ever had in the sticks, and they're actually in touch with things. You may have something else in fact, or you may not.

    But if nothing else, I encourage you to do one thing if you're on a regimen right now. When I did my sleep studies, I had to stop all supplements. It was then that I (and my friends around me) realized that maybe they weren't for me. I encourage you to try a week or two off and see how you feel. You might be surprised.

    Hope this helps someone else out there! Cheers.
     
    Sidney, merylg, sregan and 4 others like this.
  2. Misfit Toy

    Misfit Toy Senior Member

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    Well, good on you for tolerating Xyrem. I felt nuts on it. Absolutely whack and I was urinating every 5 minutes. I literally had to run to the bathroom for the amount of times I had to go to the bathroom.

    I feel that the supplements that make up this protocol affect the brain so much I tried it and other sups and felt so much energy, but totally crazed on them and then when I tried to go off of them, it's like my brain didn't work without them...like even worse than before I started them. I agree with you.
     
    merylg, Plum, justy and 1 other person like this.
  3. bigmillz

    bigmillz Senior Member

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    I've tolerated Xyrem really really well so far (knock on wood).

    How long after stopping the supplements did it take before you felt back to normal?

    Edit: just saw your profile post about Dr Maitland - curious as to how that works out as I once considered finding someone to guide me through this a bit more.
     
    Misfit Toy likes this.
  4. Eastman

    Eastman Senior Member

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    @bigmillz

    Were your symptoms like those described here?

    Or those described here?

    Did you have depression like described here?

    My mother became lethargic and slept a lot after a few months on B12 and methylfolate. Vitamin B1 in the form of benfotiamine largely got rid of these symptoms.

    Irritability is a symptom of both B3 deficiency and B1 deficiency.

    A B3 deficiency could conceivably be induced by methylation protocol since the methyl groups produced would methylate B3 and render it unavailable.

    A B1 deficiency from methylation protocol is a bit more speculative but some of us here think it is plausible after seeing symptoms induced by the protocol reversed by the vitamin. See here, here, here, here and here.

    That said, I agree with you that methylation treatment should not be undertaken lightly as it can induce refeeding syndrome and unbalance one's nutritional status.
     
    bspg, merylg, Asklipia and 2 others like this.
  5. echobravo

    echobravo Keep searching, the answer is out there

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    What is it?
     
  6. Eastman

    Eastman Senior Member

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    bspg and echobravo like this.
  7. Misfit Toy

    Misfit Toy Senior Member

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    I was on a full protocol years ago with a nutritionist that is similar to Fredd's protocol. Anyway, it took me an entire year for my brain to go back to a better place. It was like coming off of some heavy duty antidepressant. My brain had no idea how to function. I was on Tyrosine, NADH, Niacin, P Choline..C, Norival...all of this stuff and a million B vitamins. It gave me so much energy. I would dance for hours and then collapse.

    I was on B12 and moly B back in 2015 and felt AWFUL...like I was going crazy. Detoxing my brain and making me nuts.

    Maitland is for MCAS. Do you have that? She is straight up MCAS and an immunologist. Ahhh...that's right, you are in NYC. I will be going there again. I like her. She is SO smart though and I usually can understand doctors but I found her quite hard to understand. I waited 2 hours to get in to see her after I drove 2 hours up there.

    I can say this, I love Tarrytown and Sleepy Hollow. Great towns! Anything on the Hudson...love it.
     
  8. bigmillz

    bigmillz Senior Member

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    That's wild, I thought I knew just about every relevant supplement out there until I read your list. Why did you stop that protocol? Crashing?

    No MCAS here, so probably no need to see her...but I have found in general we have some excellent doctors here! Before moving to the city, I stayed as far away from doctors as possible. Here, I'm a lot more trusting, and they have a lot fewer issues with me pushing me own research on them I've noticed.

    Funny you say that, I keep seeing ads for these boat rides up the Hudson that leave from the city around this time of year. I'm yet to try one, but totally tempted to just to get a break from the city for a day. The Adirondacks are still my favorite spot in NY though.
     

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