Need an Arizona Doctor to treat Porphyria

I had similar symptoms as your husband, however, I have PCT/VP and Hep C. I don't have a high viral load, nor elevated liver enzymes and a liver biopsy revealed that I'm stage 1 after 30+ years. I didn't know that I had the virus until diagnosed with PCT. I did have blood products following the birth of my daughter in 1971.

I had a 24 hour urine test, plus serum and stool testing for porphyria. I also started phlebotomies with a ferritin level of 466.

Diet, or should I say our sensitivities to foods, toxins, chemicals, medications and the environment can be many. Are you sure that he's been diagnosed correctly?

To date, I have been called the expert on my disorder (porph) by each doctor that I've seen. Good for the ego I guess, but frustrating for someone that wants to know how to live well with the disorder. There are precious few doctors that understand the disorder. The American Porphyria Foundation has excellent information on testing procedures, treatmet, education on the different types of the disorder and lists of foods/medications to avoid. NAPOS (google) is a good site to use for medications.

I'll write more later when I've finished my work for class.

Good luck

deb

The way I found a doctor was to e-mail the American Porphyria Foundation in Houston Texas, as they have the names of doctors who work with porphyria patients. Be advised that there aren't many who have the expertise. The foundation won't recommend a doctor, but can give you names and contact information. They called me the following day wtih the information that I requested and passed on to my hematologist/oncologist, who then referred me to the spcecialist for a consult; I see him at the end of the month. It has been a long road since being diagnosed in August of 2007.

If you have had the proper testing, they should be able to diagnose the type of porphyria that you have, as the type is linked to a lack of a particular enzyme in the heme pathway.

I strongly recommend that you use the APF's website, and as many others as you can find to educate yourself about the porphyrias. Testing is specific, needs to be sent to prefered labs and handled properly.

I have been diagnosed with two types - variegate porphyria and PCT.

Good Luck

Deborah