Now that you know you have this will this change your treatment approach-what are you doing differently?
BTW- love new zealand- my husband and I took our honeymoon there 25 years ago. I was hoping to go back for 25th anniversary-but of course now things have changed..........
hope to get well again to go back there.
Yes, I'm here in NZ
and enjoying a beautiful warm mild autumn.
I'm on a high carb diet now, I eat carbs regularly, every 2-3 hours, and a lot more sweet things than I would usually eat. I'm staying away from chemicals and cleaning products (hubby is doing most of that stuff now - it's great!!) We have an accommodation business and I was doing heaps of cleaning so that wouldn't have been helping. I'm reducing my iron levels, as I tend to load iron, doing that with phlebotomy, that helps my fatigue majorly. Trying to give up coffee - very hard as I crave it. I'm drinking tea now. I am keeping right away from any prescription drugs as I believe this last attack was set off with a dental anaesthetic, as was the attack in 2008.
Treatment of Porphyria is really more about not triggering attacks, other than the phlebotomy which is probably going to be a problem getting, the rest is mainly up to me avoiding things that might set me off. There are drugs that Porphs can use, but most doctors don't have a clue about them. There are databases online and a few forums to talk to others. They have more knowledge than most doctors, that's for sure.
I've written the environmental doctor off today, wants me to chelate for mercury at some exhorbitant cost. Said Porphyria was for conventional doctors. Yeah right, that's why my conventional doctor sent me to him in the first place, she admits she hasn't got a clue about it.
Hopefully more luck with the dermatologist tomorrow. It will be interesting to see what they think of my hyperpigmented arms and gums. The rash I only have photos of, as it went away after the phlebotomy's.
Wish me luck ladies, I'm almost ready to give up looking for help.