dasu Posted February 13, 2015 Report Share Posted February 13, 2015 (edited) I got the results back for my son. I was hoping to get bloodwork in before his IVIG two months ago. We continue to have a lot of struggles with PANDAS things (intrusive thoughts, OCD, tics, LOTS of fears and anxiety) and also other things that are also may stem from other causes like impulse control, ODD, anger and ADHD. So I decided to do the 23andme. I can get my son to spit in a vial, thank you you PANDAS. I am struggling with the implications of what this specifically means. I first started only looking at the MTHFR snips, but now realize there are other genes in the pathway. The question is what should we supplement with (or not) and what dietary changes should we make. At this point we supplement with curcumin, quercetin, krill, fish oil, and, at times, lemon balm. Our diet is fairly open, having seen no changes going without wheat and dairy (although we stopped dairy in this current flare and only for about 6 weeks.) COMT V158M rs4680 AA +/+ COMT H62H rs4633 TT +/+ COMT P199P rs769224 GG -/- VDR Bsm rs1544410 CT +/- VDR Taq rs731236 AG +/- MAO A R297R rs6323 T +/+ ACAT1-02 rs3741049 GG -/- MTHFR C677T rs1801133 AG +/- MTHFR 03 P39P rs2066470 GG -/- MTHFR A1298C rs1801131 TT -/- MTR A2756G rs1805087 AA -/- MTRR A66G rs1801394 GG +/+ MTRR K350A rs162036 AA -/- MTRR A664A rs1802059 AA +/+ BHMT-02 rs567754 CC -/- BHMT-08 rs651852 CC -/- AHCY-01 rs819147 TT -/- AHCY-19 rs819171 TT -/- CBS C699T rs234706 AG +/- CBS A360A rs1801181 AG +/- Edited February 13, 2015 by dasu Link to comment Share on other sites More sharing options...
pr40 Posted February 13, 2015 Report Share Posted February 13, 2015 (edited) you did run the results through genetic gene, right? it looks very complicated -- reminds me of what we have, all these dead ends. do be mindful of sulphur in curcumin. if I understand things correctly, your kid should not be taking it or needs to regularly detox. we detox with molibdenum. here is my son's puzzle. I gave up trying to figure it out. COMT V158M rs4680 AA +/+ COMT H62H rs4633 TT +/+ COMT P199P rs769224 GG -/- VDR Bsm rs1544410 CT +/- VDR Taq rs731236 AG +/- MAO-A R297R rs6323 TT +/+ ACAT1-02 rs3741049 GG -/- MTHFR C677T rs1801133 AG +/- MTHFR 03 P39P rs2066470 GG -/- MTHFR A1298C rs1801131 GT +/- MTR A2756G rs1805087 AG +/- MTRR A66G rs1801394 AG +/- MTRR H595Y rs10380 CC -/- MTRR K350A rs162036 AA -/- MTRR R415T rs2287780 CC -/- MTRR A664A rs1802059 AG +/- BHMT-02 rs567754 CT +/- BHMT-04 rs617219 AC +/- BHMT-08 rs651852 TT +/+ AHCY-01 rs819147 TT -/- AHCY-02 rs819134 AA -/- AHCY-19 rs819171 TT -/- CBS C699T rs234706 AG +/- CBS A360A rs1801181 -- no call CBS N212N rs2298758 GG -/- SHMT1 C1420T rs1979277 -- no call Edited February 13, 2015 by pr40 Link to comment Share on other sites More sharing options...
dasu Posted February 16, 2015 Author Report Share Posted February 16, 2015 (edited) ,Yes, I got the results through genetic genie, its a lot easier than using the 23andme browse feature. But I found nutrahacker.com also provided a list of foods to avoid and supplement with... Avoid - androgens, BCAA, cannabis, curcumin, estrogens, folate, folinic acid, methyl B12, methyl donors, sulfates, taurine, B6, vitaimn E Encourage - CoQ10, diindolylmethane, L-methylfoalte, mangense, methyl B12, molybdenum, NAC, arginine, phospatitdylcholine, progesterone, ribo-5-phospate, riboflavin, rosemary, sage, SAMe, TMG, B12, B2, B3, B5, B6, D3, whey, zinc A lot of things pop up on both encourage and avoid lists. To start we will try dropping curcumin and other sulfates as recommended. As a side note, I noticed many of the supplements to avoid were taken in the pregnancy supplement. Edited February 16, 2015 by dasu Link to comment Share on other sites More sharing options...
LNN Posted February 16, 2015 Report Share Posted February 16, 2015 (edited) Dasu - in this link (post #18) you'll find some documents that may help you. http://latitudes.org/forums/index.php?showtopic=3928&page=2 I really recommend the heartfixer doc. Generally, you only want to address one gene at a time, so you can tell what's helping and what's not. Yasko says to start with CBS, and I'd follow that by addressing MTHFR and then MAO in terms of mood and behavior issues. For CBS probably need to avoid NAC and maybe curcumin/tumeric (Enhansa), and Alpha lipoic acid (because of sulfur). You can also introduce molybdenum to help break down the ammonia from CBS deficiencies. For MTHFR, you generally add methylfolate and some form of B12 other than cyanocobalmin. methylfolate and B12 are the only two supplements you generally want to start at the same time, because they're co-factors and one doesn't work well without the other. I'd start at a very low dose of methylfolate - my DD does best on only 67 MICROgrams (mcg) - higher than that and she gets very rapid mood swings with lots of anger. Other kids do better on something closer to 400mcg and a few need higher. So start low and slow. The only supplement I've found in very low doses is Holistic Health's Methylmate B (1 drop = 67mcg). http://www.holisticheal.com/methylmate-b-nutritional-supplement.html Now, for B12, because you also have MAO issues, you probably don't want to use methylB12. Instead try hydroxyB12 or adenoB12. Perque makes a hydroxyB12 in 2000mcg and Seekng Health makes an affordable adenoB12 in 3000mcg. Don't let the high dose fool you. B12 that's swallowed hardly gets thru the stomach. Sublinguals dissolved under the tongue - maybe 10% gets absorbed. So a 2000 mcg dose gets you about 200mcg into your system. B-12 shots are really the only way to get high doses into the body. The only way I found to find the right dosing of methylfolate and B12 was to build up and then eventually cross the line into "too much" and then back down to the point just before ###### broke loose. But for that period of time when you cross the line, you can have a small dose of niacin (B3) on hand and w/in an hour, it'll suck up excess methyl donors and restore some calm. You can use either niacinamide or niacin. It's much easier to find small doses of niacin (I could only find niacinamide in 500mg doses, which was higher than I wanted - I use 50mg as an antidote). But if you use niacin, realize you may get a niacin flush for 20min after using it. It's harmless but a little uncomfortable. Then move on to VDR and COMT. Heartfoxer will help with these. Good luck! Edited February 17, 2015 by llm Link to comment Share on other sites More sharing options...
pr40 Posted February 17, 2015 Report Share Posted February 17, 2015 here is what we take CoQ10, Olive Leaf, abx, magnesium, zinc (once a week), iron, fish oil. molybdenum once week in the evening. ibuprofen daily. kids are fairly stable. Link to comment Share on other sites More sharing options...
dasu Posted February 25, 2015 Author Report Share Posted February 25, 2015 I really appreciate the key information. You all were so kind to take time out to write all this key information. I am very thankful for this forum. We tried giving some B12 and it went straight into craziness, tics OCD; and that continued, even after backing down to nothing. It turns out that the kids got a Cocsaxie infection, and have the typical sores etc. In the mean time we did remove major sulfite sources and will resume when we are over this, hopefully. Link to comment Share on other sites More sharing options...
jan251 Posted February 25, 2015 Report Share Posted February 25, 2015 (edited) FWIW, dasu, just to emphasize what llm is saying, in conjunction with the methylfolate, we were told to give specifically the hydroxycobalamin form of B12 and not the methylcobalamin form of B12 for compound heterozygous MTHFR. (I had to order it on-line so we haven't started yet.) Apparently the form matters very much. Edited February 25, 2015 by jan251 dasu 1 Link to comment Share on other sites More sharing options...
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