Thank you for posting this information jsl123. The more information we obtain about this condition then the closer we will all get to being fully cured.
I have had EC since 1994. Yes, 19 damned years now! When I first got the condition it was horribly bad. Both of my lips looked like they had pieces of meat on them. I had huge crusts and even had a bit of an odor of decaying skin present. Fast forward to today and my condition has improved slightly.
I am currently seeing a dermatologist and he is trying a triple series of diluted cortisone injections. So far the injections are only making the crusts grow thinner but, the condition still persists. I actually gave this doctor an article that longterm posted a while back ago showing how there were 4 cases of exfoliative cheilitis in El Salvador and all 4 cases were "cured" with hyaluronidase injections followed by an ointment composed of 1% hydrocortisone and 1% neomycin. I gave the dermatologist the article and he felt that I didn't have the same condition. I asked him if we could still try the treatment anyway and he told me that he wasn't comfortable experimenting with something he didn't know about; even though I gave him a published medical article with some details of the effects. The thing that pissed me off the most was that he had no problem prescribing me a pill called, "Soriatane" (which I refused to take) used to treat some forms of Psoriasis
that would: shrink my liver, make my hair fall out, make my face feel flush, cause jaundice and a treasure trove of a whole bunch of other side effects that I sure as hell DO NOT want.
I currently use vaseline and I am surprised at how it really helps me now. However, sometimes it turns the crusty skin white. If I were to jump in the shower and expose my lips to water for a good 20 to 30 minutes then usually the crusts will turn bright white, get weak, and then slide off. I can actually feel them sliding off and it annoys the hell out of me.
My biopsies in the past showed excessive fungal microbes present. The biopsy I had done this year showed no presence of fungal bacteria. I hate biopsies because they leave painful scars. The one I had this year was no different. I took pictures of that and posted it on here. You can look for my pictures folder under Ibinns.
I also had a patch test done and all it did was make a doctor $8,500 richer. They even did special bakery allergens and everything came out negative. I had a reaction to one thing called "Thimerosal" but they said that it was irrelevant to my condition. After the patch test, I was prescribed Protopic and sent on my merry f*cking way by the lead "specialist," who was dumbfounded at all the things I knew about my condition more than what he knew.
Folks, I was in a room with 6 doctors, and honestly? I felt like I was the only specialist in there because none of them knew or even had a clue as to what was causing this to me.
I call bull*hit on the "lip licking" doctors often accuse us of doing because other people do far worse things with their lips and they don't get this sh*t. People kiss rigorously, sweat while working out, get cut & bleed from falling or doing martial arts and THEY DON'T GET THIS CONDITION!!!
On another note, when the crusty skin falls off I notice that the area underneath is bright red. My guess is (and longterm suggested this too) that the minor salivary glands (or maybe even capillaries) are either infected, clogged, or being attacked by our white blood cells (autoimmunity) for some strange reason. I also have fordyce spots around my lips that I never really seen there before when I didn't have this condition.
Sorry for the long (and often off the initial thread's topic) post but, this condition is just killing me from the inside out. I wouldn't wish this *hit on my worst enemy - if I had one!