have you tried protopic (tacrolimus)?
it hasnt cured or come close to curing my ec but it did change it.
for about a year my lips were consistently inflamed (even purplish) until i began using protopic %0.1 and finally the consistent inflammation subsided, they still get inflamed at times throughout the day but protopic broke the consistency. i suspect that my lips are still quite "inflamed" deep inside - judging by the fact they have grown in size since i developed ec but it no longer bothers me 24/7. however the buildup/peeling cycle was not effected by protopic.
i suggest you try it out for a month and see if it helps your inflammation, you can use the lower %
i have been off it for over a year and the inflammation has never returned to its pre-protopic state