Hi Rich,
I agree that I think that the lack of ability to use folinic might be pretty rare but it may be more common that you think. I think that a possible way to spot it is the alternating diarhea-normal or diarhea-constipation form of IBS rather than the steady diarhea version, especially if that is tied in with certain other things such as intermittant angular cheilitis, intermittant dermatitis, intermittant acne, intermittant finger tip/nail skin deterioration, happening together in some combinations. I also have edema tied into that and tied to that intermittant low potassium when the water dumps off of me. MS follows that intermittant better and worse pattern in some people also. This is a testable hypothesis. I have 5 or 6 things, and I am watching for more tha all come and go together. I can MAKE them all come on by eating too many veggies for several days in a row and make them go away by eating a lot fewer veggies and taking more Metafolin. In the data you have from the study were any of the symptoms of that kind of an intermittant nature on a longer time base, especially several symptoms together? I think that this might be able to be able to be a first internet study of it's kind. It can be closely defined and has a way to a-b-a-b the situation demonstrating very convincingly both the cause and the cure. If this is involved with 1/3 of our CFS/FMS symptoms in the short term and most of them in the long term when allowed to continue perhaps FMS/CFS are the result of a selection into this group by people with folate problems.
Hi, freddd.
Sorry, we didn't track the symptoms in that study in a way that would test your hypothesis.
I think it would be interesting to try to find out how prevalent an intolerance of folinic acid is in the ME/CFS population. Since folinic acid is one of the two most commonly occurring folate forms in natural foods, it would seem to me that this would be pretty rare, but who knows? It would be a good thing to find out. As I've noted, I think this has to be due to a genetic variation in the MTHFS gene. The 23andme panel genotype characterizes 22 polymorphisms in this gene. Here are my results on them:
MTHFS 77924615 rs8923 C or T CT
MTHFS 77925626 rs2733103 C or T CC
MTHFS 77925800 rs16971427 A or C AA
MTHFS 77929052 rs655473 A or G AA
MTHFS 77931252 rs17284990 C or T TT
MTHFS 77941626 rs16971450 A or G AA
MTHFS 77942037 rs6495446 C or T CT
MTHFS 77945097 rs7177659 A or C CC
MTHFS 77945214 rs6495449 A or G GG
MTHFS 77949320 rs17285431 A or C AC
MTHFS 77951108 rs6495451 C or T CT
MTHFS 77952423 rs2586154 A or G GG
MTHFS 77955337 rs12899781 G or T GT
MTHFS 77959026 rs16971478 A or G AA
MTHFS 77959188 rs2586153 C or T CC
MTHFS 77961443 rs2562744 A or C AA
MTHFS 77964742 rs2733106 A or G AA
MTHFS 77965338 rs12438477 A or C CC
MTHFS 77969105 rs12898642 C or T CT
MTHFS 77970821 rs2586182 A or C AA
MTHFS 77971712 rs2733088 A or G AG
MTHFS 77973395 rs12440798 C or T CC
It might be possible to correlate folinic acid intolerance with one or more of these polymorphisms.
Best regards,
Rich