I have been on another protocol for CFS and FM and CRPS (complex regional pain syndrome) and am completing some tests to move over to CPn help.
But I am SO interested in secondary porphyria. I have been dogged by a monthly acute pain that has been around for 18 years now. I have had all sorts of 'oscopies' that were NAD and lots of all sorts of tests with no outcomes. I have had 2 urine tests which indicate low level porphyrins but I'm afraid that no doctor of influence has had any idea of what is occurring.
There is a definite cycle - the pain generally occurring on 21 of each month but occassionally on a different date. Alcohol affects me severely- takes me about 5 weeks to recover from the event (consequently never touch alcohol) After such an event, I cannot eat protein, just naturally know to stick to carbs. Hormone therapy is a no-no as well. Causes much more severe pain at the time.
I am fortunate that my doctor is switched on to abx therapy for CFS etc but I have never been able to find a way to 'prove' I have porphyria which would allow me admission to a major hospital and at least a trial of heme. I do drink glucose drinks which help a little at the time but mostly I have to bomb myself out with Endone, Buscopan Forte and anything else I can get my hands on. This event always occurs at night and lasts about 8 hours.
So long for such a mystery but I have revelled in reading the articles here on secondary porphyria - thank you for all your efforts