Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
I admit I don't know much about SNPs, but maybe you meant MTHFR (instead of COMT) which has a problem with folic acid (that's added to wheat flour)? Also certain DHFR polymorphisms would have a problem with folic acid.SO MANY of us are COMT ++. Can you imagine what all that fake folic acid in all the bread products does to us?! I make bread now for my family ( I cannot eat bread), but we have to look FAR AND WIDE to find UNENRICHED flour!
Yasko has a better chart than Heartfixer for this on her new "simplified protocol" page. http://www.scribd.com/doc/132017201/Dr-Amy-s-Simplified-Road-Map-to-Health It's about halfway down the page. For your combo of COMT +/+ and VDR Taq +/+, she suggests hydroxycobalamin and adenosylcobalamin. It's somewhere in the middle between the two extremes.
In theory, you should start with SHMT, which is taking folinic. What was your experience with that?
CBS would be next, but A360A is a minor one. It doesn't seem to be an issue for the 2 or 3 people I know who have that one.
C677T is a big one, and you'll likely need methylfolate. Your MTR (processes B12 ) is ok, which is good. You have a couple of MTRRs which is B12 recycling. So some additional B12 is probably in order, but you may not need huge amounts like some others do.
BHMT is the secondary pathway, so some TMG for that.
With a VDR taq +/+, for sure get your vitamin D levels tested, and supplement with that if needed.
Something like Rich's Simplified Protocol might be the ticket for you.
How long did the positive effects from folinic acid last? Lecithin has choline which will also stimulate the BHMT pathway. If TMG increases methylation too much for you, you could take extra B3 which uses up methyl groups (mainly SAMe) so they'd sort of cancel each other out (sort of). I've made my biggest recoveries during periods where I got a lot of sleep (10-11+ hours) so that's good news.caledonia,
Thanks so much for the info. A bit of a learning curve on this! That Yaskow chart is super helpful.
I actually started Rich's SMP while I was waiting for my 23andMe results. Had a noticeable increase in energy for about a month, then crashed. A terrific early response to folinic acid (have a thread here called Bouncing off the walls with folinic acid: http://forums.phoenixrising.me/index.php?threads/bouncing-off-the-walls-with-folinic-acid.22353/). I would say folinic is very good for me!
I do run low on D, but have been able to stay at about 60 on 5000 ius.
Do you feel TMG is okay despite the COMT + ? Found this on heartfixer.com:
TMG can be used to stimulate BHMT (but not in COMT (+/+) individuals, who will be sensitive to free methyl groups). I'm still confused how the VDR Taq ++ impacts the ++ COMTs.
I've been slowing increasing SMP supps. About ten weeks since I started. Folinic no longer gives me a thrill (have worked my way up to 800 mcgs). Just got adenoB12 and started a small amount yesterday. Gut problems, fatigue and body pain all giving me trouble. However, 25-year insomnia is completely cured since starting the SMP. Sleeping 9-12 hours a night -- can you believe it?? If that's all I ever get from this, it will have been totally worthwhile!
So appreciate your help here, Caledonia. Big big hug to you!
How long did the positive effects from folinic acid last? Lecithin has choline which will also stimulate the BHMT pathway. If TMG increases methylation too much for you, you could take extra B3 which uses up methyl groups (mainly SAMe) so they'd sort of cancel each other out (sort of). I've made my biggest recoveries during periods where I got a lot of sleep (10-11+ hours) so that's good news.
It's unlikely, but you could try dropping folinic acid for a few days to make sure you're not one of the people who is unable to process folinic acid. If you don't feel a difference after 4 or 5 days then it's probably something else. Nandixon said he felt better the first day he took folinic, but then gradually got worse:Thanks, Lotus! I only felt the one super-burst of energy from folinic acid. After that 800 mcg mistake, I started taking 200 mcgs per day without noticeable effect. Slowly worked up to 800 (over the course of two months) and feel no response to the 800 now. Just continue to be very tired and low energy.
But as you say, the abundance of sleep I'm getting can only help...
I may be intolerant to folinic acid (seems to cause exacerbation of fatigue, irritation of taste buds) and so am providing my DNA results. We need MTHFS results from as many other people as possible, though, whether intolerant or not.
If you could also include the one SHMT result that Yasko tests for, that may be helpful also. I'm heterozygous (AG) for that SNP (SHMT1 C1420T rs1979277), and the first day I took folinic acid it helped, as might be expected, but then I seemed to gradually get worse over several days (800-1600 mcg/day).
It's unlikely, but you could try dropping folinic acid for a few days to make sure you're not one of the people who is unable to process folinic acid. If you don't feel a difference after 4 or 5 days then it's probably something else. Nandixon said he felt better the first day he took folinic, but then gradually got worse:
http://forums.phoenixrising.me/inde...d-intolerance-request-for-genetic-data.19168/
If you could also include the one SHMT result that Yasko tests for, that may be helpful also. I'm heterozygous (AG) for that SNP (SHMT1 C1420T rs1979277), and the first day I took folinic acid it helped, as might be expected, but then I seemed to gradually get worse over several days (800-1600 mcg/day).
Folinic acid stays in your system a long time so it might take at least 3 days (if not longer) for you to notice.Hmmm...that's interesting. I have the same SNP status as Nandixon here:
SHMT C1420T rs1979277 is AG
Per that thread:
I will try dropping the folinic for a few days and see what happens. Thanks, Lotus!
Folinic acid stays in your system a long time so it might take at least 3 days (if not longer) for you to notice.