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Monday, November 15, 2010

Quest for the Holy Grail or a Diagnosis of Porphyria: The Many Colors of Urine....Someone, PLEASE, tell ...

Quest for the Holy Grail or a Diagnosis of Porphyria: The Many Colors of Urine....Someone, PLEASE, tell ...: "How many times does a person stop to think about the color of pee? Life in my house seems to revolve around the color of our pee. I am su..."
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  1. AnnieNovember 17, 2010 at 5:17 AM

    Hello Rene',
    Same story here, also in Texas. A "porphyria expert" in Texas lab tested me when I was symptom free (which is rare) and determined that I do not have porphyria. A group of physicians feel otherwise and gave me a "clinical diagnosis" of porphyria. Attached is my blog posting, including how my husband and I have researched and developed a management program for my and my children's porphyria:

    http://thebunnybungalow.com/2010/01/confluence-of-event-and-time-or-how.html

    Warm Hugs,
    Annie

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