Dejibo, I was on a very good diet while with my parents, and got way off it when I went to Stanford, and had my first (undiagnosed) big Porphyria attack. Yes, food plays a giant role in controlling porph, but it's not the only factor.

What kind of doc to get dx of Porph? I am afraid that merits a long answer, but I'll try.
A hematologist is usually the diagnostician for porphyria. Yes, the test is best given when one is in active attack; this is especially true for some forms of porphyria. Because you have the sun sensitivity, you may have HCP or VP (we discussed this before). To get a proper HCP diagnosis, you MUST have stool test as well as urine test.
And preferrably have it while in attack. However, I did get a positive test from my stool
even while not in attack, although it was not as "high" positive as it might have been in
attack.

If you can travel, I can suggest one possibility of a doctor; go to University of Utah at Salt Lake City. I have never been there, but I have heard they have a good laboratory for testing porphyria. You must insist, however, that the dx be related to family history as well as to test scores, and you already have a mom who has the symptoms. Another
outstanding place--where I have never been, but have heard very good reports--is Loma
Linda University in California (I guess it is in the town of Loma Linda east of San Diego).
The main diagnosticians I had are retired. If by any chance you have VP, which is also
sun sensitive, I believe there is another test given which is peculiar to that form, but I forget what it is called. I would really try Loma Linda, if I were you. But if you can't go there, you can start living by the porph protocols. Many people do this who cannot get to a really experienced diagnostician.

mariel

Mariel