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MTHFR- Acute Side Effects

Discussion in 'General ME/CFS Discussion' started by DKnickerbocker, Jan 27, 2014.

  1. DKnickerbocker

    DKnickerbocker

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    Hi I'm Mike, I'm new to this forum. Over the past 3 months my life has been turned upside down and I am in dire need of advise. I know there is a lot of wisdom and experience on this website...so I'm hoping folks can help me figure out what is happening to me.

    I'm a 46 yr old MWM. Medical/psychiatric professional. Always been healthy and active... and with the exception of unexplained weight gain and high estrogen levels over the past few years I've had no health problems.

    Then in November a new hormone doc gave my a medical food supplement called Estrium. It is designed for women but is also used in men to help clear estrogen. It is loaded with B-vitamins. What my doc didn't realize was that I was already taking a B-complex, b-12 and multi-vitamin. Soon after starting the Estrium I started having a tingly pins and needles feeling all over my body (like prickely heat) I also started swelling and fluid retention... and gaining weight in odd places... my upper arms and armpit area...

    He thought it was an overload of B-vitamins. My regular intergrative doc had a hunch and ran the MTHFR test from Quest.... I came back positive for 2 copies of C677T. I stopped the estruim after only 3 weeks... In mid Novermer he started me on Methyl B-12 and Methyl Folate...

    I did not do well with these so we dropped the dose in half and started using Niacin (he was following Dr. Ben Lynches protocols). The swelling and pins and needles slowly started to subside... but the body fat remained... About a month ago I stopped the Methyls altogether... I also had my 23andme done and went up to Philly to meet with Shawn Bean from MTHFR support... We are waiting for the test results (I also just did a GI stool test and wikll be doing a nuerotransmitter test soon).

    What has has happened more recently is this... every few days I get hit with a wave of agitation and anxiety. I had a really bad episode last week... I did eat two protein bars and took a multi-vitamin(first time I had done this in months)

    Shawn Bean thinks that because whatever I kicked off in November with the Estrium I can no longer handle any fortified or synthetic supplements.... After I took these I started getting the tingly feeling and fluidy feeling...

    Shawn thinks this is some kind of inflammatory response but would that cause actually weight (fat) gain ? I'll still be working with Shawn and the folks from MTHFR support... but I'm trying to pursue all avenues.... any thoughts on what may be happening to me would be greatly appreciated.
     
    Last edited: Jan 27, 2014
  2. Helen

    Helen Senior Member

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    Hi Mike,

    Welcome to the forum. Polymorphisms in the estradiol metabolism are rather common among people with ME/CFS and/or methylation issues. You might have seen the link to www.geneticgenie.org where you can get a methylation and a detox panel after you have recieved the results from 23andme.
    The slides 38 and 39 to this talk
    iaomt.media.fnf.nu/2/skovde_2011_me_kroniskt_trotthetssyndrom/

    present some of the SNP´s in the panels that might affect estradiol metabolism. You can find the slides separately in the first link under the video. Maybe you will get some help from them.
     
    Last edited: Jan 27, 2014
  3. DKnickerbocker

    DKnickerbocker

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    Thanks Helen for your response.... I'm working with the folks from MTHFR SUPPORT tregarding getting the 23andme broken down. They have an app and Shawn Bean is pretty good at interpretting the SNPs.

    I took a look at the slides from Rich's presentation.

    While the Estrogen is an issue... I think what has happened to be is some kind of toxic autoimmune reaction.... Both times to the B-vitamins.... My reaction seems uncommon... I've learned I needed to stay away from synthetic vitamins and food... only real food from this point on.... The reaction seems like some kind of periphial nerve injury...
    Just now sure how to preceed from here in the short term until the testing comes back . I feel like I need to detox but not sure from what or how .
     
  4. maryb

    maryb iherb code TAK122

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    @DKnickerbocker
    how will you get the B vitamins from food? I have a major problem with tolerating Bvits but know I have a need for them, interested to know.
     
  5. DKnickerbocker

    DKnickerbocker

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    Eating "Real food" will generally give folks what they need... Easier said than done from someone who was eating processed protein bars LOL. If you eat the rainbow of fruits and veggies every day you are doing pretty good. Some people juice or do green smoothies... which I like. Only problem comes when folks are vegeterians... really hard to get b-12 . B-12 only comes from animal sources. If you are not a vegetarian adding some lean, preferably organic meats, eggs, fish,, ect will round out your diet.

    Until this past November I had no trouble taking vitamins... somethng has happened to my system... toxic overload, genes expressing, inflammatary cyctocons, periphial nerve damage, or who knows what.... But I ended up in the ER after taking one multi-vitamin and eating two protein bars. Again anyone ever have acute symptoms like this ?
     
  6. maryb

    maryb iherb code TAK122

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    @DKnickerbocker
    I became intolerant/allergic to masses of stuff including most vitamins and minerals immediately after having low dose immunotherapy - I was okay before this and could tolerate most things. It seems that it just takes one thing to knock the system out of balance and that's it.
    I have a really restrictive diet - I don't eat eggs, dairy, casein, gluten, sugar. haven't had organ meat for a long time- maybe I should try a little liver again. I eat mainly chicken, some pork, beef and lamb and I do try to include a lot of veg but I'm not absorbing the nutrients according to my doc so its difficult.
     
  7. dmholmes

    dmholmes Senior Member

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    I think the agitation could certainly be partly estrogen dominance. Any gluten and/or soy intolerances?
     
  8. DKnickerbocker

    DKnickerbocker

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    Maryb… it is amazon how one thing can kick something off… which nutrients are you not absorbing ??? MTHFR have trouble with converting folic acid into folate…. There are other gene defects that can impact absorption as well as clearing the bad stuff…. COMT folks apparently don't do well with Methyl b-12… they need other forms.
    Then gut issues could be a factor… I'm no expert and am learning as I go.

    The MTHFR Support folks say… Heal the gut first, then detox, then methylation.

    dmholmes…. I generally have always been more of a low carb person… don't do soy… .bad for guys with estrogen issues. I've been on an aromatase inhibitor for a few months and that is keeping my estrogen mid range. problem may not be so much high estrogen (although that has been a issue in the past) but rather clearing the estrogen. With 2 copies of the MTHFR C677T it reduces my ability to clear "stuff" by about 70%. Additionally my Docs are betting I have COMT based on my poor response to Methyl b-12. COMT is also involved in estrogen metabolism… when the 23andme comes back I'll have more answers

    The MTHFR Support folks I'm working with think the agitation is coming from some gene expression I kicked off.
    Anxiety and agitation is also common when using methyl b-12(if you have COMT) and with the Methyl Folate if you start over-methylating. Niacin is used to neutralize this…. The Niacin has not helped me recently so that is why they are thinking the neurotransmitters are out of wack…. Methyl folate messes with Dopamine….

    I talked with a doc today that thinks the swelling and sudden (which hours) fat gain is from toxins going into my fat cells… from what I read the body sends them there rather than the organs… safer I guess… if that is accurate !

    Question now is how do I detox toxins from my fat cells…???
     
  9. caledonia

    caledonia

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    For the anxiety you can try GABA. It's very common for the GABA/glutamate balance to get out of whack. GABA is calming, while glutamate is stimulating. GABA and glutamate are neurotransmitters.

    If you do decide to try it, start with a small amount, like 1/8 of a pill or less to see how it goes first. Some people do get an opposing reaction, so if that does happen, it will only be 1/8 as bad. For a final dose, you may or may not need a whole pill. For example, 1/2 worked best for me. It wears off after a few hours, so it's best to dose it 3-4 times a day to get consistent coverage.

    Eating only real food is good because most processed food has MSG in (artificial glutamate). There are also several foods naturally high in glutamate - tomatoes, mushrooms, peas, Parmesan cheese. I think there's one more, but I can't remember it. So if you can avoid those too, and do GABA, (assuming it's a high glutamate problem), it should help.

    This might explain the protein bar problem - they contain whey protein isolate, which has glutamate.

    Yasko and Heartfixer both have info on this (see the links in my signature).
     
  10. dmholmes

    dmholmes Senior Member

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    Wheat, especially when processed.

    Good to know about tomatoes, might explain my glutamate levels.
     

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