I've given up on leaving it alone. I'm hoping that someone on here will find something that works and ill be sure to try it. For now I've moved half way around the world for the next year or so. I'm working on mentally accepting it and finding a good regimen to manage it. My current regimen is: 1. Soak a gauze sponge in hydrogen peroxide and hold it between my lips for 3 minutes, then take it off and whipe off any area that turns white and any part that isn't white and begins to peel I trim with a scissors which I carry around with me. 2. Apply epiceram cream 2-3 times daily.
I go to bars/clubs almost every night and get drunk a few times a week, ill keep this up for a while before things settle down a little. I carry around a somewhat natural chapstick with me in case my lips start looking really dry as a result of all the drinking. Its an spf 30 so I also use it when hiking or at the beach.
No one on in my apartment has any idea of my ec, I've met lots of girls and none of them even glanced twice at my lips. It sucks to have this burden and if people start posting success stories with any treatment ill be sure to try it. but for now I'm sticking with this. The epiceram doesn't reduce buildup (I thought it it would) but it reduces inflamation.
I realized protopic was actually making my lips irrated so stopped it. I like how epiceram is a cream and not an ointment so while using it I look normal.
The downside to my routine is I feel like it can never heal like this, with my constantly removing the buildup. But I am starting to accept the fact that ill probably have this shit for many years if not the rest of my life. If you are removing the buildup too I suggest you try my routine. With the peroxide/epiceram. I doubt it'll turn out to be a cure but it certainly makes living life a lot better.
Btw, the specialist I flew out of the country to see guaranteed me that removing the buildup would not prevent healing. He is a top oral pathologist, so there is some hope that I am not setting myself back in terms of healing. The key thing is to remove buildup without causing more irritation. If you are forcefully removing the buildup then stop, because if it is attached that well its probably still cureable by leaving it alone.