Thanks for posting, Seb. I'm someone who avoids contact with water and lip-licking, manages with scissors and uses no lip balms or chemical moisturizers (only aloe vera). I think I made my condition worse with these, and am suspicious that my obsessive cutting has somewhat hindered the healing process as well.

Looking at your pics, I feel that you either have a chronic infection or perhaps a different underlying condition than most of us, based on the coloring. I'm also curious about if your condition has been stable for a long time, or worsened over the years.

Enzyme40, you never told us about your week-long fast. Did you notice any slowing down of the peeling cycle? Were you only drinking lemon water?

Two weeks into my elimination diet, and the peeling has gotten less orderly. I also have a much itchier scalp, all over.

Monday, I'm getting a personal steam inhaler, my plan is to create a spa directly on my lips and do it every day while on my diet and keeping stress low. I will update if anything changes. If you want to try it too, I can PM you the brand name, but you could probably build your own or just run hot water in your sink or shower really long.

Hi,

Hang on slow down a minute, I was under the impression this forum was about evidence, support and possible courses of treatment to alleviate the symptoms that accompany EC. As indicated in the threads posted earlier, you may have picked up on a couple of details:

1. I'm a 44 year old male
2. I am happily married with children
3. I've had this condition in varying forms since 1994 (29 yrs old)
4. If I smile right now, yes some of the keratin will fall off but even after soaking, both lips will bleed and infection will set in.
5. Lip balms didn't work back in 1994 and they don't work for me now.
6. I have received many types of treatment from some of the best and most caring specialists in this field. (All listed out in detail earlier).
7. I am a full time employee of the UK Government based in central London so if you define commuting into Westminster every day as "hiding in the house" then so be it.
8. The reason my parents didn’t tell me how to “fix my lips” is because they are dead.

You may wish to be a little more careful with your assumptions in future. Your comments might be more constructive if they contained information that others could usefully analyse. i.e.
1. do one or both lips emit clear mucous?;
2. do you lips bond together when you sleep overnight and how do you separate them?;
3. does the composition of the crusting change with the seasons?;
4. does the condition of the lips improve in summer or winter?;
5. does hot food/drink affect the lips differently to cold food/drink;
6. do the lips show signs of improvement if you inhale and exhale through your nose rather than your mouth?;
7. do they prefer a humid or dry environment? Etc etc

I think I’m a little bit beyond the “I use chapstick and water to rub my lips together in a kissing motion” stage. Sorry, I don’t wish this to come across as a personal attack as it is my intention to discover similarities between our conditions and ensure some progress is made in treating the disorder. We could learn so much. Maybe I’m on the wrong forum.

No worries. I have been using the clean up with water and chapstick method since I moved back to London from the States in 2005 and basically seeing no light at the end of the tunnel or relief from pain. This last 6 weeks has been an experiment to see what would happen if left alone after all this time. Although I don't like what I see and people continue to be cruel in the face of such a condition, I need to know how things are progressing and if any changes are occuring. For intance, two nights ago my lips fused over night with the bottom lip eventually dragging off most of the crusting that was on my top lip. Normally a new layer would start to develop pretty much immediately but almost three days further on and I'm left with nothing but fairly pink, soft skin and no signs of a new layer. I'll keep everyone posted.

clofazimine is the drug that cured a previous man with cheilitis. you may want to reconsider the vermillionectomy since I don't see how it could make your condition worse. you could try a laser vermillionectomy to just a small area and see how it responds. I have had an inflamed salivary gland and it secretes a thick clear substance that turns the mucosa white when wet then the skin drys and turns yellow. anyways goodluck.