looneymom Posted January 22, 2015 Report Share Posted January 22, 2015 Just wanted to share a blog on the MTHFR defect. If you have done the 23 and Me testing, you might find this blog post helpful. My son has the hetrozygous MTHFR snp. Recently, Tyler had a test that showed high Methionine levels. Our doctor is going to be checking his Homocysteine levels again. It's been a couple of years but this needs to be checked whenever you have a test that shows up with high Methionione levels.Tyler is hanging tough but progress is slow. Mentally he is strong and doing well in school. He is on grade level but physically he is weak. He is unable to do PT because the tremors get worse with exercise. The tremors will go for an hour or more after one leg left. He is able to sit up by himself but unable to stand or walk.He is taking Plaquenil to help keep the antibodies suppressed and so far this seems to be working. His headache pain level is less but not gone. So I think another part of the puzzle is still missing. I am wondering if this may have something to do with histamines.High histamine levels can cause motor tics. I am wondering if his tremors are the same thing as motor tics I plan on asking about a histamine and DAO testing. Your body makes DAO to suppress histamines. So if the body does not make enough, your histamine levels are always too high.Tyler will see his doctor tomorrow. I have already sent him an email with questions and testing . I will keep pressing for answers and hope this is not permanent damage to his nervous system. Hope everyone is having a good day. http://www.stopthethyroidmadness.com/mthfr/ Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 22, 2015 Report Share Posted January 22, 2015 Thanks for this. Quote Link to comment Share on other sites More sharing options...
dizzyallie Posted January 24, 2015 Report Share Posted January 24, 2015 Hi Rachel, will have a read. Ive been diagnosed with this gene defect but all in treated with us folic acid and vitamin b. I'm sorry your son is going through all this trouble too, its not easy, for anyone. Hope your doctor was able to help answer some questions. Quote Link to comment Share on other sites More sharing options...
arizona girl Posted January 24, 2015 Report Share Posted January 24, 2015 Thanks Rachel I'm mthfr homozygous and my father is hetrozygous and just had major clotting issues after he broke his hip and had replacement.I'm also back on plaquinel almost two years now. Was put on it about 20 years ago when they thought I had mixed connective tissue. Between that and the thyroid meds my lipid panel and inflammatory markers improved even more then just the ivig alone.Dizzy, if you are mthfr one must be careful with the form of b vitamins they take. Regular or inactive folic acid can build up in the body and cause problems if you are mthfr, as the enzyme the converts is switched and can't process it. I take the active forms methylfolate solgar brand and methyl b12 jarrow brand. Quote Link to comment Share on other sites More sharing options...
dizzyallie Posted January 24, 2015 Report Share Posted January 24, 2015 Hi Arizona girl, yes my spec has me on megafolinic and methylcobalamin b12. I have very lil understanding on this gene defect and god knows my spec doesn't explain it easily. Quote Link to comment Share on other sites More sharing options...
Goschi Posted January 24, 2015 Report Share Posted January 24, 2015 Hello everybody,I am MTHFR homzygous too - only found that out by chance a couple of weeks ago. I have read that 12-15% of the whole Population are.Could there be any connection to Dysautonomia? Quote Link to comment Share on other sites More sharing options...
arizona girl Posted January 24, 2015 Report Share Posted January 24, 2015 Well it is associated with many medical conditions, including autoimmune disease. My dysautonomia is due to the damage done to my small fiber nerves as a result of autoimmune disease. Is the mthfr gene the one the caused my particular autoimmune issues, don't know, but maybe. It might be another gene I don't know about. Since I have one bad one I may have more. There is a lot of research going on with it. My cardio is who tested mine as it's associated with some cardiovascular disease.The good news is it's easy to bypass. Cut out all foods and supplements that have folic acid the inactive form of folate and supplement with the methyl or active forms of the Bs. Eat lots of fruits and vegetables, folate is already in the active form in those foods. Quote Link to comment Share on other sites More sharing options...
Goschi Posted January 27, 2015 Report Share Posted January 27, 2015 Arizona girl, do you know which particular autoimmune disease caused your small fiber neuropathy? I was diagnosed with it too (skin biopsy), but never found any cause - docs just told me I don't have any autoimmune issues.(Maybe my MTHFR Mutation and the resp. metabolic conditions are directly responsible for the SFN?). Quote Link to comment Share on other sites More sharing options...
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