trintiybella Posted September 8, 2013 Report Share Posted September 8, 2013 Do you treat this mutation just with folate? My current doctors don't treat for this. Should I find another specialist to help guide me? Link to comment Share on other sites More sharing options...
pr40 Posted September 8, 2013 Report Share Posted September 8, 2013 (edited) sorry, I don't know how to delete my own post. Edited September 8, 2013 by pr40 Link to comment Share on other sites More sharing options...
msimon3 Posted September 9, 2013 Report Share Posted September 9, 2013 I believe the proper treatment for C667T is L-methylfolate: http://www.ncbi.nlm.nih.gov/pubmed/22108397 Link to comment Share on other sites More sharing options...
LNN Posted September 9, 2013 Report Share Posted September 9, 2013 (edited) You also need to make sure she has adequate B12 as B12 and methylfolate are co-factors and only do their jobs when both are present. Start very, very low - like below 100 micrograms. Too much too soon can make symptoms worse. many of us end up figuring this out on our own, as most doctors don't have experience. But your daughter's situation is so complex, I might try to find professional help. There's a list of doctors who understand/treat methylation issues on www.mthfrsupport.com Edited September 9, 2013 by LLM Link to comment Share on other sites More sharing options...
trintiybella Posted September 9, 2013 Author Report Share Posted September 9, 2013 S.S. had me start at 1000 mcg. She has been there for two days. Pretty tough. Do you think I should just stay at this dose now that I am there. UGH. Wish I got your post sooner. Link to comment Share on other sites More sharing options...
LNN Posted September 9, 2013 Report Share Posted September 9, 2013 My DH takes 800mcg. so 1000 is pretty high IMO. My DD8 takes 67mcg every other day. 1000mcg would make her bipolar and evil. You're DD has a lot of other medical issues, and I'm not a doctor. So I hesitate to give any advice beyond saying what's worked for my family. But if you don't like what you see, you may want to call the doctor and discuss significantly lowering the dose and tapering up over many weeks if needed. We found our magic dose by going low, building up past what she needed, seeing rapid mood cycling and then stopping for 7 days to let everything calm down. We re-started at 67mcg and when I went to every day, small signs of the rapid cycling came back. When I backed down to every other day, she stayed steady and happy. Since your DD is closer to an adult, she would probably need more, but I'd get your doctor's input. Link to comment Share on other sites More sharing options...
trintiybella Posted September 10, 2013 Author Report Share Posted September 10, 2013 (edited) k Edited September 11, 2013 by trintiybella Link to comment Share on other sites More sharing options...
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