abbe Posted December 17, 2009 Report Share Posted December 17, 2009 Cheri, I had no ides about the connection of mycoplasma and Crohns. Nicky doesn't have any stomach issues right now I wonder if that is the next thing for me to worry about. abbe Link to comment Share on other sites More sharing options...
Chemar Posted December 17, 2009 Report Share Posted December 17, 2009 yes, I hadnt heard the connection until I saw a brief piece in our local paper a Google Search brings up quite a bit of info Mycoplasma and Crohn's Link to comment Share on other sites More sharing options...
britneymag Posted December 19, 2009 Report Share Posted December 19, 2009 Abbe, I was just researching pyroulia and cannot find tics or light sensitivity as a symptom. How did you hear of this? Are there any OCD symptoms that go along with this? Melanie Link to comment Share on other sites More sharing options...
Chemar Posted December 19, 2009 Report Share Posted December 19, 2009 Hi most of the info that I have re pyroluria is anecdotal as many medical professionals dont even recognize it as a condition. Alternative doctors do and there are also labs that can test for it there was some very definitive work done by a researcher who went by the user name FJ* on the now lost archives of another neurology forum that documented her research and her own child's misdiagnosis with TS when he in fact had pyroluria. Her information was very comprehensive but when that database crashed in 2006 it was all lost and I havent been able to trace her since there are also a number of posts here related to it, again primarily anecdotal, but also with info on testing, symptoms etc here is a link to the search results for it Pyroluria Info from ACN Forums perhaps Abbe will have some additional resources on it Link to comment Share on other sites More sharing options...
abbe Posted December 22, 2009 Report Share Posted December 22, 2009 Cheri and all, Regarding pyroulia I dont have to much to go on except what I googled and read on line. When I read the symptoms besides tics like mood swings, anger, rage it all sounded like my little Nicholas. I cant say for sure that "treating" for this has been the only reason he is tic free. I like many others here went after everything for him this past year from yeast,allergies,mold, lights etc. I think it has been a combo. of things. HOWEVER< I can say that I am sure this plays a big role for him. Link to comment Share on other sites More sharing options...
abbe Posted December 22, 2009 Report Share Posted December 22, 2009 abbe interesting re the flashing as I have heard the same from others with pyroluria...that it seems to heighten photosensitivity Cheri, He can't handle bright lights, flashes, video games for sure. He seems much better since the addition of the b6, the zinc and primrose (these are the only changes I made when I did he test. He gets one half a b6 with p5p mybe 25 mg and zinc 25 mg day and night. The b6 at night gives him nightmares Link to comment Share on other sites More sharing options...
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