hi megan,
on the one hand, i'm glad you finally got a diagnosis that explains your symptoms so you can start treating the disease and not the symptoms, on the other hand, sorry that you have this.
i thought i remembered seeing this on on mystery diagnosis and i just found that yes it was covered, here's some information from that program, though its probably redundant to what you've already found:
porphyria the only thing i saw at quick glance that looked potentially helpful that hasn't been discussed yet was hematin.
i do see the high carb diet and all i can say about that is carbs are either simple sugars or starch for the most part. and if you were to get that much carb from the simple sugars, i don't think it would be good for your "blood sugar", could lead to insulin resistance / diabetes down the road. but maybe others have better information.
just glad you now know what you are battling, that always helps.
