Thank you! I try my best. I don't have enough words to tell you how grateful I am that you took the time to reply to my post wholeheartedly.
Here is my reply in case you ever drop by again some time.
1. When you showered normally when you had full blown EC, how did you manage going out in public? I assume that not all your buildup would come off evenly. Was it really just a case of manning up? If I recall correctly, you got this when you were 16. Being a new sufferer and a teen one at that (I'm 17), I honestly don't know how to face the world.
2. Thanks for the tips! Who knows maybe in some way or another it could help with my EC. Fingers crossed, though. If it doesn't, well at least I can give my dentist an ogasm every time I visit her haha!
3. Bepanthen is the only moisturizer that has helped my lips look the most normal and control the buildup the longest. I still get buildup, but unlike you I'm still afraid of getting them wet, mainly because I'm paranoid that maybe the buildup would be mushy and obvious the next day. I actually tried the same probiotic pills you used for about 2 weeks, and I can't really say if they helped. I ordered them when they were on sale, but I recently checked Amazon and they're now $84.99 wtf! Also, the German Bepanthen isn't available anymore on Amazon.
Digestive imbalance: I'm only a new sufferer (6-7 months now, it just started around towards the end of 2015) but you know what, prior to this I was taking my nutrition seriously. I was into bodybuilding so I was tracking all my calories and macros and I was DEFINITELY eating very nutritious and healthy meals. I started taking both whey and casein protein powders and it was around a month or two after that EC started. The thing is, I did tons of research before buying supplements and I bought one of the top brands out there, Optimum Nutrition, so I don't know if the protein powders are to blame or it was all coincidental.
I remember reading somewhere in your history about the spleen having something to do with the lips. Throughout all the years have you actually tested anything for it? Could it really have something to with the lips?
Trauma: I am not new to lip picking, licking or biting either. I also suffer from chapped and dry lips from time to time BUT months before EC, I -suddenly- suffered from a very dry lower lip. I actually asked my grandmother for chapstick and told her to buy me one as soon as possible because I was worried as to why it was very dry and weirdly enough, just the lower lip. Everything was back to normal and I barely had to use the chapstick. Many months later, I was just doing my usual routine of brushing my teeth before going go to the gym but I noticed my lips were peeling and some of the skin was white. Initially, I thought this was just a weather fluke and I hoped that some rubbing would clear it up, but little did I know that it would get a lot worse in the coming months, after all I was used to damaging my lips from time to time but they heal normally anyway. Could the sudden drying be connected to EC? I believe so, my EC started on the bottom lip and the sudden drying was only on the lower lip.
Autoimmune: Interesting. I should also get checked soon. Regarding immunity, do you think stress honestly plays a role in EC? Obviously, a lot of people are stressed and stress is common. I know stress can weaken the immune system, but I just don't buy it being a very huge factor. I was stressed too when I had EC, but it's nothing like those severely depressed people who have other things to worry about, and for the record not even they get EC. If anything I was actually just normally stressed, but usually very relaxed. Maybe the sudden drying also had something to do with my immune system. Unfortunately, I will never be sure of anything regarding this condition, after all I never even thought that something this horrible existed.
Bacterial infection: Coming from a not so rich country and a self-supplied water from who knows where, I was thinking this may have something to do with my EC. I was complaining to our house staff as to why our water was so smelly and why couldn't we just buy water elsewhere but they told me that my grandparents (I lived with them prior to my immigration here) do not want water as we have our own. The thing is, I was drinking that water since the beginning of 2015, and I got my EC towards the end of 2015. Maybe some sort of toxicity built up over time? Also, I've actually had braces throughout HS, and I had them removed and got retainers around my graduation which was around March 2015, and I've actually complained to my dentist that my lips were peeling a lot more frequently compared to when I had braces. The actual symptoms of EC, the whitening and peeling, only "suddenly" began around Oct or Nov 2015. I visited my dentist before I left for the states and told her I actually developed this rare condition, and she told me that if the retainers were indeed the cause then my symptoms should have started as soon as I got my retainers, not many months later. Unfortunately, we will never be sure of anything thanks to this condition's ambiguity.
One thing I can vouch for is that I have clear pictures of my lips throughout 2015, and there is clearly traumatic damage to them. I actually do remember peeling them a few times both before and after getting the retainers so I pretty much had a dry lip problem then.
5. I've heard reports of people's conditions improving upon SLS removal. I guess it won't hurt to try. Fingers crossed as always.
6. Honestly? You'd be way richer there if you had a dollar for every single stupid thing people do. Bumper to bumper traffic, BUSES racing each other and hitting cars, beating red lights when no other cars are present etc. You will definitely be very stressed when you try driving there in case you do visit.
Once again, thank you so much. I'm glad to hear you enjoying life normally now and I wish you the very best. I'm not hopeful for a cure or anything, but I wish I could place my EC in dormancy as well, there are a lot of things I'm missing out on. In the meantime, I'm trying my best to prepare for college and deal with my EC on an emotional level.