Christianmom Posted December 13, 2012 Report Share Posted December 13, 2012 My daughter (non-PANDAS, non-lyme) is being treated for mold illness and candida. The doctor ordered the MTHFR test, and she has the compound heterozgous A1298C + C677T mutation. I have looked at other comments on the forum about this subject, but haven't found anyone with this particular mutation combination. If your child has this, how did your doctor treat it? (My son is currently being treated for his heterozgous C677T mutation with B12 shots and 5-MTHF 1 mg/day.) Link to comment Share on other sites More sharing options...
LNN Posted December 13, 2012 Report Share Posted December 13, 2012 I don't have any experience with A1298C and can only tell you Yasko suggests using DMG/TMG. But I came across this site today - they have a forum as part of the site and maybe someone can give you some good info http://www.holisticheal.com/methylmate-b-nutritional-supplement.html There's also a Facebook page with the same name with the same people. It's an open page, so you can see all posts and comment if you choose without needing to join a group (but likewise, everything you posted would be public). Link to comment Share on other sites More sharing options...
dut Posted December 13, 2012 Report Share Posted December 13, 2012 Hi - both I and my PANDAS dd have this. We are using Methyl Guard Plus which has the B6, mthf, B12 and trimethylglycine (TMG) that uses an alternate methylation route so you get support for 2 areas of methylation. I think it also has B2 but would have to check that.... Link to comment Share on other sites More sharing options...
philamom Posted December 13, 2012 Report Share Posted December 13, 2012 (edited) Hi - both I and my PANDAS dd have this. We are using Methyl Guard Plus which has the B6, mthf, B12 and trimethylglycine (TMG) that uses an alternate methylation route so you get support for 2 areas of methylation. I think it also has B2 but would have to check that.... Is this a good product if you only have the A1298C mutation (homog)? Or should some of those ingredients (besides TMG) be avoided? Thanks. Edited December 13, 2012 by philamom Link to comment Share on other sites More sharing options...
nicklemama Posted December 13, 2012 Report Share Posted December 13, 2012 DS is compound heterozygous. He is on methyl B12 injections, P5P (a form of B6), methylfolate, alpha lipoic acid, plus some other supplements based on deficiencies we've found through testing. Link to comment Share on other sites More sharing options...
Dedee Posted December 13, 2012 Report Share Posted December 13, 2012 One of my sons and my husband have this. It is difficult to find information. I treat them the same as my kids with the C677t and then also add in the little bit I have found on the A1298c which is pretty much the same as the others have mentioned. I do know that A1298c mutations have a tendency to have more issues with seratonin than others. I have found this to be true with my two guys as well. Dedee Link to comment Share on other sites More sharing options...
MichaelTampa Posted December 14, 2012 Report Share Posted December 14, 2012 Hopefully you mean 1gm 5mthf, not 1mg. I have this and am also on something more complete, like mentioned above. I am taking Xymogen's "Methyl Protect". I take sublingual-able vitb-12, as, my product has b12, but I don't trust it will be absorbed, so I also take Pure Encapsulations 5000mcg vitb12 (liquid, and hold under tongue for a minute). Link to comment Share on other sites More sharing options...
rowingmom Posted December 14, 2012 Report Share Posted December 14, 2012 Hopefully you mean 1gm 5mthf, not 1mg. Yikes! I think Christianmom means 1 mg - 1000ug. DD11 takes this every other day (per LLMD) for heterzygous A1298C, along with 30 mg P-5-P, 2000 ug sublingual B12 daily and 500 mg liposomal glutathione daily. 1 gram seems like a lot! Link to comment Share on other sites More sharing options...
LNN Posted December 14, 2012 Report Share Posted December 14, 2012 Yikes here too! DD takes 67 MICROgrams. I've heard of people on 10mg of Deplin and that's about the highest I've come across. Yasko, Van Konynenburg and Lynch all suggest 400-800micrograms as a starting point. So talking about taking grams of the stuff is a new one on me. Michael - are you actually taking grams? FWIW - I've read that there's an upper limit of absorption on methylB12 per wikipedia (midway thru the article under the heading Absoprtion and Distribution: It's important to note that investigations into the intestinal absorption of B12 point out that the upper limit per single dose, under normal conditions, is about 1.5 µg: "Studies in normal persons indicated that about 1.5 µg is assimilated when a single dose varying from 5 to 50 µg is administered by mouth. In a similar study Swendseid et al. stated that the average maximum absorption was 1.6 µg [...]" [65] So if you're taking more than that, you may want to space out your doses and break it into smaller amounts, as it seems more than 1.5mg at a time is wasted. It also discusses how the body will only store about 2-5 mg, most of that being stored in the liver. Link to comment Share on other sites More sharing options...
MichaelTampa Posted December 14, 2012 Report Share Posted December 14, 2012 Sorry for the confusion everybody. I was confused, my bottle says I'm taking 1000 micrograms of the 5MTHF, and I'm so used to things being shown in milligrams or grams, I thought it was 1000 milligrams. So, like ya'all, I am taking 1000 micrograms which is 1 milligram. Regarding B12, I have taken both 1000 mcg and 5000 mcg, actually same product, and I energy test better for the 5000 mcg product, taken as a single dose with breakfast. The reason could be the higher dose, or it could even be the other ingredients, which are slightly different. As a vegan, I take the B12 thing fairly seriously and have used a number of products over the year, and am trusting my pendulum that I'm taking the right one. I don't test it often, but haven't had any tests show this as low, or as concerningly high. Link to comment Share on other sites More sharing options...
landamom Posted December 15, 2012 Report Share Posted December 15, 2012 This is good information. My dd is also compound hetero for those two mutations. My problem is that she will not take pills. Do any of you have suggestions for supplements that are liquid? I have a methylb12 that is liquid but my understanding is that should not be taken alone? Thank you. Link to comment Share on other sites More sharing options...
Christianmom Posted December 17, 2012 Author Report Share Posted December 17, 2012 Thank you all for your replies. Very helpful information! Link to comment Share on other sites More sharing options...
dut Posted December 17, 2012 Report Share Posted December 17, 2012 landamom - we open up the methylquard plus and stick it on a spoon with some pharmax probiotic on top. Both dd9 and ds5 will take it like that... Link to comment Share on other sites More sharing options...
mommyb Posted January 1, 2013 Report Share Posted January 1, 2013 Hi everyone, I am new here. My daughter is 8 and after being told by many specialists she just has tics, we are discovering it is pandas. She responded immediately to antibiotics and is 80%+ better. Her labs are still distressing, her strep titres were over 700, she is recovering from Mono right now. Anyway, I am just starting to learn about this MTHFR stuff and don't understand it. All I know is her C677t (or rs1801133) is AG and mine is AA. Can anyone tell me what this means? Thank you so much! Link to comment Share on other sites More sharing options...
mommyb Posted January 1, 2013 Report Share Posted January 1, 2013 Oh also. For the other one a1298c, she is GT and I am TT. Thanks Again Link to comment Share on other sites More sharing options...
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