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chap

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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

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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.

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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

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