Yeah, I did the kryptopyrrole test as above and to my surprise it was negative. Apprarently it can often be negative due to many reasons. But the urinary porphyrin test (I may have spelled that incorrectly) is slightly different, and there are a few different types of porphyrin disease, some so severe that death happens shortly after birth.
So, I'm not totally clear on the differences but the 'gold standard' tests besides the barely available genetic tests now being preformed in a Mt. Sinai New york hospital on a trial, is done at Phillip Auguste Laboratoire in France. http://www.labbio.net
if you are interested for a quick research about it.