Cj60 Posted December 1, 2010 Report Share Posted December 1, 2010 Hi everyone, We met with my son's dr. yesterday to go over the results of a test we had run. It was called an "optimal nutrition evaluation" by Genova Diagnostics (I think formerly known as Great Smokies Diagnostics). We had it run because I had read about the adverse effects of an inhibited methylation pathway. As it turns out, his methylation works just fine. The only marker that came back as a concern was the one for dhppa, which was high. Our dr. recommended Caproyl, a caprylic acid supplement. Anyone with any experience with this supplement meant to combat intestinal bacteria? My concern is with possible herxing. Thanks Chris Link to comment Share on other sites More sharing options...
4Jack Posted April 21, 2011 Report Share Posted April 21, 2011 Hi Chris, How is your son doing? My ds was just got testing back with very high DHPPA. We are starting him on CD herbal and Cd biotic by Kirkman to fight the clostridia. The.natural methods are supposed to have less die off than antibiotic. Did you have testing for mutation C677t. If positive it can effect methylation. My ds was positive for that too. We are starting B12 therapy. Good luck, Lisa Link to comment Share on other sites More sharing options...
Cj60 Posted April 21, 2011 Author Report Share Posted April 21, 2011 Hi Lisa, Thanks for the information! When we had the comprehensive systems test done, our son came back ok with regard to methylation. But he did come back high on dhppa. We used a supplement called Caproyl for a couple of weeks, but being an oil, it was tricky finding a time and a food to mix it into, so it kind of strayed from our radar. We noticed no adverse reaction to it (herxing) while we were able to administer it. Also, our meeting to discuss the results of the test indicating high dhppa came a good six weeks after the test, during which time we had been giving probiotics fairly consistently (although we have again stopped doing so). I remember thinking that maybe his levels weren't as high by then as they had been when the test was administered. We had also started by that time, and had seen positive effects from a good multivitamin. He's been doing well with the diet, the multi (with small doses of inositol added in), and the magnesium, so I've kind of let the Caproyl slip by the wayside. But I appreciate your message; I'm thinking we will get him tested again for the dhppa just to be sure we aren't neglecting something important. And I'll look into the C677t, too. What led you to test for that? Thanks again, Chris Link to comment Share on other sites More sharing options...
4Jack Posted April 28, 2011 Report Share Posted April 28, 2011 (edited) Hi Chris, Here is a good link for info on dhppa and the neuro symptoms it can cause. http://www.greatplainslaboratory.com/home/eng/hphpa.asp Its written by the lab that does the test, so i'm always weary the info might be biased but I did a lot of research on this and its all consistent with what I've read. Dhppa (which is a metabolite of Clostridia)can cause or worsen so many of the symptoms my DS9 has (TS, OCD, digestive issues,some ASD behaviors though not dx on the spectrum). For those reasons, I can't wait to knock it out! We just started the supplements yesterday but I will post on the progress. As for the C677t, the DAN! trained RN we are seeing typically tests for it because it is common in kids with neurological disorders. Interestingly, his methylation showed up as fine on the Organic Acid test but he was positive for the mutation which says that he does have a defect in the methylation cycle. Not sure why it wouldn't show up on the acid test but the mutation was tested by labcorp and is 99% accurate. The acid test did show that he had high oxidative stress (due to not enough glutathione which can be caused by methylation defect and proessing b6, b12 and folic acid the best way). This one is really concerning since oxidative stress is a precursor to many illnesses. He's taking the CD biotic and CD herbal to knock out the Clostridia and B12 nasal spray to address the mythelation. We have previously been doing GF/CF diet, Super Nu Thera multi, inositol, calcium, C, zinc, CoQ10, and krill oil. He can swallow pill which helps. Hope this helps! Lisa Edited April 28, 2011 by 4Jack Link to comment Share on other sites More sharing options...
trggirl Posted May 11, 2011 Report Share Posted May 11, 2011 Hi Lisa, I really appreciate your post telling what you are taking. Please update if you get a chance and let us know what is working and what is not working. Link to comment Share on other sites More sharing options...
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