this is my first post on this forum but I have been a lurker here since I developed EC over 1.5 years ago. although my lips are not completely healed, the progress I have made since my EC onset has been remarkable--so much that I want to share it with other sufferers in hope that it offers some comfort.
My case of EC came about after I went searching for an online remedy for my self-diagnosed angular cheilitis. basically, I had cuts at one corner of my mouth that caused permanent redness, itching and some scabbing. I went to a doctor who prescribed me an antifungal cream that didn't help. so I went online, read about this amazing dish soap cure, thought what the hell and applied it over my lips one night. Then, I smothered Vaseline on top. Well, it didn't cure my AC and instead gave me EC...awesome! after that night, my lips started peeling off in white slimy chunks and you know the rest of the story.
my case was pretty typical on this board. maybe even one of the worse ones. I had the white line on both inner lips from which the peeling began and a recurring V pattern on the top lip. If I didn't do anything to my lips, they would start forming multiple layers of crusty cornflakes which were so unsightly that I peeled off what I could, but even then, my lips looked completely disgusting. When I drank liquids or took a shower, the layers on my lips turned white. I was embarrassed to go out in public because I knew it was not something you could ignore. when I was out, I did not drink liquids unless it was through a straw. Dating was impossible.
I tried different chapsticks initially, which obviously did not work. For two months, I saw doctors and tried various antifungals and mild topical steroids. None of them stopped the peeling. then I found this forum and tried some suggestions here (melatonin, urea cream) because I was desperate and evidently didn't learn from my dish soap experiment. I didn't stick to any for a long time since they didn't seem to generate many success stories, and after a while I became tired of grasping at remedies I found on the internet. My lips did not improve during this period and would fully peel every 4-5 days. They were also visibly red and inflamed from all the crap I put on them. Certain foods seemed to make it worse.
So I decided to change my diet and started taking EPO pills. This was 3 months after the onset of EC. Being a junk food eater up to this point, this was a huge lifestyle change and incredibly difficult to follow through with, but I think changing what I eat really improved my lips. I essentially followed a candida diet and cut out all processed foods, sugars, etc. No soda or caffeine. I cut out red meat for while and ate a lot of vegetables. Made green smoothies with ground flax. To be sure, the change was VERY gradual. My lips continued peeling and I would minimize scales by carefully snipping at them with nail scissors. then I discovered I could make my lips easier to peel by softening the layers with Aquaphor, which I applied with a q-tip. I knew this wasn't the solution because I've read of petroleum being the EC cause in some people, but somehow I thought it wouldn't do much harm because it's not pure petroleum. at the very least, it made my lips more manageable.
after following this regimen for a year, my lips improved to a point where I could go out without people staring at my lips. I stopped getting the white line. Aquaphor made the peeling less visible, which was important to me, and my lips in general looked to be in a better state. however, I knew I was becoming dependent on Aquaphor because it had a drying effect on my lips and required constant re-application. I couldn't continue using it. I came on here, read a suggestion of using pure glycerin on the lips, researched it and tried it after deciding it was a legit remedy.
now, after three months of glycerin, my lips are at the best they have ever been since my EC started 1.5 years ago. Some areas still peel but with less frequency and the layers are thin. I no longer worry about how my lips look to others because I know they don't notice anything. most importantly, I don't really even notice it myself. I can finally drink without a straw (huge triumph) and dating...KISSING is no longer a problem (bigger triumph). I continue with my diet to this day, although it is much more flexible now, I take EPO, and use glycerin daily to moisturize my lips. I'm confident they will only get better with time.
I hope this helps those of you suffering because I know how bad it gets. try not to stress out about it too much--I did plenty of that and it really brought me down. this forum is a good place to find support from fellow sufferers but it can also be a depressing, strangely addicting place, so I want to provide you some hope that things can get better.