Last week I started on Amoxycillin and Probenecid twice daily after ramping as recommended. The week prior I had pulsed with Flagyl and felt fantastic. Had so much energy wasn't quite sure what to do with it.... Friends suggested I visit to clean their homes!!
But on adding in second Amoxycillin last Monday - had acute porphyria attack. Terrible pain in liver and abdomen. Taking 4 Endone, 4 Buscopan Forte + sleeping tablet just does nothing. Pacing floor until 4am and finally get 2 hours sleep. Lots of glucose ingestsion as well. When I have these more acute attacks it can take weeks to recover.
I do have a regular attack every month for no known reason but I have read the paper that Basil has listed abut another woman who had regular monthly porphyria - thank you Basil Shame you don't respond to any emails now as you probably could throw a little more light on my situation.
I am now at a loss as to what abx to take. I was ready to trial Rifampicin but I am concerned as it seems implicated in porphyria. I have had issues with Klacid and Vibramycin combo when on previous protocol. I think I can take Doxy with no porphyria.
So right now, I am disappointed and frustrated. I understand that if I can get the right abx combo I can get rid of the porphyria which I had had for about 18 years now. But getting the wrong abx combos exacerbate the porphyria. I seem to be in a Catch 22 situation.
I have made an appointment to see an haemotologist later this month, but I resent paying doctors to teach them about prophyria. Because I never have positive urine tests, they never look at my clinical picture - they are purely evidence based.
Any suggestions would be really really welcome..........