It sounds creepy
, but if they do the job, why not. It's not like they haven't been tested out for centuries.
I'd have done anything to get rid of this darn iron too!
I have to thank you all for bearing with me in my search which I believe is now coming to an end.
I had mild iron overload which was putting me to sleep, and the porphyrins were causing neurological symptoms. PCT (Porphyria Cutanea Tarda) gives you iron over load if mixed with one of the hemochromatosis genes. But PCT doesn't cause neurological symptoms apparently. So we've probably got one of the more rare porphyrias. The one called hereditary coproporphyria seems to fit the bill best, but I'm off the the docs today, because I need to get the tests while my attack is active and the porphyrins are in my system.
This will be magic for my family. We have been sick for so long. Getting diagnosed with MS was a very bad thing as it stops your search and we had both kind of accepted what our lives would be like. Sleeping and lots of weird brain things going on.
I will have my life back.
The treatment will be to maintain low levels of iron through phlebotomy (because of the C282Y hemochromatosis gene), and we cannot eat any dairy products or beef, can't take hormone (contraceptive pills or a lot of other drugs that will make us react). No alcohol, no smoking.
My niece has this too, she has suffered from depression and anxiety since born, even as a baby we noticed it. She's had a life on anti-depressants and also got the very bad stomach problems that can go with porphyria. She spent a week in hospital with supposed food poisoning a couple of years ago, and the hospital never picked up the porphyria. She lost 2 stone and was off work for a long time. She was on the contraceptive pill.
I've had one of those stomach episodes in the 90's, now I look back I know what it was. I went from 13 stone down to just over 7 stone, was covered in those skin blisters. Doctors prescribed antibiotics for the infections in my skin, but that was it. Still undiagnosed. The reasons I had this episode was my gynocologist told me to double my contraceptive pill dose because I had a cyst on my ovaries. I can work that out now.
This is absolutely marvelous!!!!!!!!!!!!!!
There is a good database on all these drugs we must avoid. i have to get my two kids genetically tested and they will probably have to have the same regime if they got the genes passed to them. I can still eat other meats such as lamb (my favourite, and with many millions roaming the hills here in NZ, I won't miss beef).