Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Methylation problems

Discussion in 'General Symptoms' started by monica871, Jul 19, 2016.

  1. monica871

    monica871

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    I didn't know I had terrible genes till a natural doctor I was going to put me on massive doses of b vitamins and really screwed me up. I have never had any problems taking vitamins before this but now I can't even take vitamin c, omega 3, or any b vitamins esp b6.

    They had me on neuromethylation cream 1 pump a day(5-mthfr (5mthyl tetrahydrofolate), hydroxycobalamin, mehtylcobalamin, pyridoxal-5 phosphate, mature vitamin d3), adaptocrine 1 tab 1 a day, progestaid(which has b12 as cynocobalamin in it, b6 p5p and other b vitamins), p-5-p 2 tabs a day. I got so sick that I felt like I had fibromyalgia and wasn't sleeping at all. These vitamins were taken in the morning. The doctor said it couldn't be the vitamins so I stopped taking them and went to an Mthfr doctor who then proceeded to put me on different vitamins.

    They tried same which made me very dizzy just 1 250 tablet. B-minus which has p5p, riboflavin, nicacin, thaimin, biotin, and pantothenic acid and that made my whole body hurt too. Then they tried neurocalm from designs for health and that made everything hurt it was hard to walk down the stairs and pick up plates to put them in the dishwasher.

    So now I don't want to go back to that doctor because after lots and lots of money and no progress I still can't take any vitamins that is vitamin c, omega 3, and magnesium. I do think I might have a sulfur/ammonia problem. My gut is very healthy because of all of the probiotics I take and by eating a very healthy diet no gluten no processed foods most of it I make myself. I also have the tests that say so.

    I got my mthfr done and it says I am detoxing at about 75%. I am having pain in my abdomen and rashes on my hands. I still have sleep problems but not as bad as when I was taking bvitamins and I am not in as much pain but what do I do now. I don't know where to start and I am afraid I am going to get so much worse because I don't think I am detoxing and that just seems bad.

    Also the vitamins the docs gave me made me feel like I had Alzheimers and it scared the hell out of me. I have hetero mthfr c677t a homo cbs a360a. homo comt v158m rs4680, homo comt h62h rs4633. I am not sure which other ones I need to try but this has been going on for almost a year and a half.

    I don't know what to do at this point and I would really like some direction and some hope that I will be able to take some vitamins without what seems to be overmethylation myself. Thank you so much for any help.
     
    Last edited: Jul 19, 2016
  2. ahmo

    ahmo Senior Member

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    Northcoast NSW, Australia
    @monica871 Please break your post into paragraphs. Too hard to read. thanks

    I don't have answers to your issues. Try the list of beginning methylation vids and text linked in Caledonia's signature. Also, Methylation for Dummies linked in my signature. Welcome and good luck.
     
  3. caledonia

    caledonia

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    Popping in so you can see my signature link. I have lots of methylation info starting with beginners info.

    I get achy, with extra fatigue and crashing if I take too many B vitamins too. You may be very sensitive and only need a few mcg like me. I would like to point out the document Start Low and Go Slow which has the methods I use for testing out new supplements one at a time, and dividing them into small doses.

    As you found out the hard way, the B vitamins can have very powerful effects and need to be approached with respect and caution.

    If you're still experiencing overmethylation type symptoms, you can do 50-100mg of the nicotinic acid form of niacin to rapidly quench methylation. Per Ben Lynch, this can be dosed every 4 hours or even as often as every 1/2 hour to an hour if necessary until the symptoms clear. This could still take several days depending on how far you're overmethylated.

    The COMT mutations could make you susceptible to severe mood swings from methyl supplements, but you aren't reporting that, so that's good.

    Other than that, you need to pair functional testing with SNP testing with functional testing, to see what your body is actually doing. You shouldn't be treating someone based on SNPs alone, as SNPs are only potentials and may or may not be expressed.
     
  4. monica871

    monica871

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    Thank You
     
  5. monica871

    monica871

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    Yes I had no idea that could happen with vitamins. The doc sent me to a therapist I thought I was losing my mind. The depression and mood swings were horrible. As long as I stay off of what they told me to take I am fine. I get achy, burning eyes, and head fog when I take vitamin c, omega 3 and most any other vitamin I try that I was able to take before.

    Do you recommend a specific brand of nicotinic acid? I can go to seeking health and order some but if you have one you like I can try that one.

    Do you have the specific testing in the doc? I do have the 23 and me test. I am thinking of an organic acids one. I couldn't figure out about a specific test for sulfur/ammonia. Can this be done without a doc, since I have had such bad luck with them or can you really really hurt yourself even if you go really slow? I know you guys aren't doctors but you have gotten to a good point I hope with your health and methylation. The info I was looking at from both of you was very well put together.
    Thank you!
     
  6. caledonia

    caledonia

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    Ok, so you are reporting mood swings. The COMT mutations are why this happened. In the future, there are steps you can take to make sure that doesn't happen.

    I'm not sure what is happening with your new intolerance to vit c, omega 3, etc. Was there by any chance some ALA (alpha lipoic acid) in any of the vitamins they had you taking?

    Nicotinic Acid Niacin:
    Now brand Niacin 500mg Sustained Release tablets - the label doesn't say nicotinic acid, but their website says it is.
    Bluebonnet Niacin 100mg Vcaps - the label does say nicotinic acid

    I've tried both and they seem the same to me.

    A good overall test is the NutrEval test which is several tests all rolled into one, including organic acids. The Kreb's cycle testing is my favorite part. It shows you exactly why you might have fatigue and what may help to fix it.

    I think the best price is Integrativepsychiatry.net. They have what I called "rubber stamp" doctor on staff who will sign off on the test for you.

    I got my blood drawn at Any Lab Test Now which is a US national chain of independent lab testing. At the location I went to, they were actually familiar with the NutrEval, knew how to take care of the blood and urine, pack it up and so forth.

    You can get a further interpretation of this test with the Nutreval Interpretation Guide on my links page.
    You can get ammonia levels from the Nutreval. You can get sulfur levels from the urine sulfate strips I have listed.

    If you start low and go slow, test out one thing at time, keep a good symptom journal, and possibly also learn self muscle testing, you can minimize adverse events.

    You kind of have to think of yourself as a scientist performing experiments on yourself and be objective. Don't get impatient and start taking a bunch of things all at once, especially at normal to high doses. You can always ramp up later if you're tolerating the lower doses.

    Couple of more ways to possibly hurt yourself - taking mercury chelators the wrong way (like the ALA I mentioned), starting up methylation and getting into potassium deficiency and not realizing it. Not knowing the secret of niacin to quench overmethylation.

    I've tried to spell out all the pitfalls between "Start Low and Go Slow" and "Roadblocks to Successful Methylation Treatment".
     
  7. monica871

    monica871

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    Thanks for the heads up I am watching the videos and thinking about when to get the Nutreval test done. After I quench the overmethylation how long should I give it to before I take the Nutreval test to get accurate results?
    Thanks so much for all the great information!
     
  8. caledonia

    caledonia

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    I think once you're feeling back to normal, you're good to go. The NutrEval instructions say to stop all unnecessary medications and supplements for 4 days before testing.

    It's good to keep a record of exactly what you were taking when you were tested so you can sort of compensate for that when you look at the test results.
     
  9. monica871

    monica871

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  10. monica871

    monica871

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    Also is it bad to be taking zypan- hcl when i take the test? I am not sure if i can eat anything if i don't take it.
     
  11. caledonia

    caledonia

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    That looks like it. You can shop around to the various online labs to see who's the cheapest.

    As far as Zypan, I think it would be ok. I kept taking everything I was taking, but make sure you note it somewhere what you were taking at the time of the test, so you remember later. Then you or your practitioner can compensate for that when they look at the results.

    Integrative Psychiatry also has this test and they have a nurse practitioner you can ask questions and get supplement recommendations from (costs you some extra money) - this is if you're not working with your own practitioner.
     

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