Man, I apologize for taking so long to get back to your post. Also, you have awesome grammar! Sorry but, I'm a bit of a grammar snob.
I tend to compliment people who possess the patience and a keen eye for their typing. Welcome to the U.S. I have a friend that lives in Cebu City and she is pretty much aching for me to visit. I hear that--despite the unbearable weather at times--it's like a paradise in certain areas over there.
But, here are my answers to your questions.
1) I think N.J. does have fluoridated water. However, the water in New Jersey is definitely not as well controlled as it is in New York for some reason. I know people that have homes in New Jersey who have purchased home filtration systems for their homes. In short, New Jersey water is definitely NOT the best, and I'm sure it won't be ideal for someone with EC. However, I live in an old building so, you are not really guaranteed super clean water regardless of where you live. But you can try brushing & rinsing your mouth out with distilled water if you feel like the water is a concern.
It is not so bad to get the lips wet. I always showered normally when I had full blown EC. The skin will eventually fall off anyway so, sometimes the water aids in that. I don't think having that dead skin on your lips for a long time helps either because it begins to decay at some point.
You know, I did the whole using a straw bit for drinking and brushing my teeth and honestly? I felt like a damn mental patient doing that. In other words, it just added to the mental burden of having EC and I just stopped doing it within a few days.
Yeah, I still kept getting minor buildup when using Bepanthen. I didn't notice much with the probiotic pearls at first but, they somehow helped with that red inflammation lining in the mucosa that I mentioned. I wish I would have taken a picture of it when I still had it but, I no longer have that red lining in my mucosa. I feel that the red lining plays a huge role with EC. Inflammation is referred to as "hyperkeratosis" in the medical world.
I applied Bepanthen to my lips whether they were raw & red or not. Bepanthen is a great moisturizer but, yes, it can dry your lips out a bit as it also happened to me. You can also try coconut oil. I use the Nutiva one which is extra virgin & cold pressed. The coconut oil will most likely be absorbed though so, it won't last long on your lips.
2) Yes, I would DEFINITELY recommend oil pulling whether you have EC or not. It truly does work. I practically gave my dental hygienist an ogasm when she saw my teeth after I have been oil pulling for a month. I no longer oil pull as I used to but, when I did I used sesame oil.
The one I used is below. It is available on Amazon.com. (Your super ally for unique products to obtain in order to battle EC)
These are some oil pulling pointers that I have discovered:
Sesame oil: this oil is mostly good for inflammation
Sunflower oil: this oil is a more generally purposed oil for oil pulling & is the more popular one to use
Coconut oil: this oil is mostly good for its antibacterial properties. However, do not spit it out in your sink afterwards because it will clog your pipes.
I alternated between the sesame and coconut oils, but only use one when you're doing an oil pulling session. It just allows for the full benefit of the current oil being used. You only use a tablespoon amount and swish rigorously for 20 - 25 minutes. DO NOT swallow, not even a drop. I swear that I swallowed a little bit by accident one time and I got an instant sore throat that lasted for 3 days. That freaked me out but at the same time reassured me that something was indeed taking place.
No, I did not oil pull when taking the probiotics. I just kept forgetting to do it amidst my crazy schedule. I should go back to doing it though. It did work well for me.
3) Well, Bepanthen was the turning point in my battle with EC but the Probiotic Pearls were the game changer. I was fasting while taking them also, not because I wanted to but more because my job is so damn stressful that I didn't even have time to eat. So I usually ate like only one meal in a day while taking the probiotics. I don't take the probiotics as often as I used to anymore. However, the red inflammation lining went away during the course of taking the probiotics. Remember that those Earth Pearls are a timed release probiotic so, they really get deep into your digestive system.
The red inflammation lining is a part of your lips that look like tiny bright red veins in your lips when looking at them closely with a flashlight and a mirror. That diminished greatly in a few weeks & then went away completely after a couple months of using the probiotics pills.
I don't think the calendula, vitamin E, etc. really worked for my EC in the past because I still had pretty bad EC while using them. They aided in my overall health, yes, but when using them for EC directly, they just did not work. Bepanthen and the Earth Pearls were where the battle with my EC was going to turn for the better.
4) My theory for why doctors can't solve this condition is mainly because they don't want to put the effort into it. EC probably affects a few thousand people worldwide. So, it isn't a common enough problem to devote resources towards. That is my main theory to it in regards to the medical world. Also, aside from it being an isolated case with each person, I think EC is a combination of a type of: digestive imbalance, trauma, autoimmune, bacterial infection. Let me explain those things in more detail based on my theories and my own experience with EC.
Digestive imbalance: given my success with the timed release probiotics, there is definitely some type of digestive imbalance. I suspect yeast because A) I had a culture done years ago that came back positive for excessive yeast. B) If left uncontrolled, excessive yeast can cause a lot of problems in the human body. C) Some people have reported EC after taking particular types of antibiotics which wreck havoc on your digestive system.
Trauma: caused from excessive biting, picking, peeling. Causes damage to underlying mucosa/blood capillaries which then exposes them and causes them to become infected. Teeth have a ton of bacteria on them so, biting your lips deep only introduces that bacteria in there. As a matter of fact, the German Bepanthen I posted is a wound healing ointment. The translation of "wund-undheilsalbe" is, "wound and healing ointment."
Autoimmune: what some people may not know is that some yeast can actually use keratin as a food source. So as your body is trying to repair your lips, the uncontrolled yeast is in there feasting on it and making your body attack the cells because it is trying to control the yeast. It's like a cop shooting at a suspect with people in front of him. So, in trying to eliminate the bad, you sacrifice the good as well. Unfortunately, the body has no problem in sacrificing other cells in order to try to remove a threat.
Bacterial infection: when I first got EC my lips grew corn flake type skin which was green and smelled like decay under my nose. This was by far the absolute worst parts of my EC. It was like some other worldly thing. I'm pretty sure it was a secondary infection caused from the exposure of my lips being open from me biting them until they bled. I did take antibiotics at one point that killed off the secondary infection. So, after a while, the skin buildup would look white or kind of tan but no longer green or bruised.
5) Actually? Yes, I stayed away from ALL SLS products. I began using different soap & shampoo. I have always dry shaved with an Andis outliner so, I don't use shaving cream. I only recently began introducing SLS back into my overall personal hygiene in the form of shampoo and toothpaste because my lips are at a point that they don't appear like they are really affected by it. However, I really like the Tom's of Maine Botanically Bright toothpaste so, I continue to use it.
6) I don't know when I got sick. It pretty much creeped up on me from my high stress levels at work. I am really trying to control my emotions at work though. As a matter of fact, I spend most of my energy in trying to stay calm. I'm currently a truck driver so, I'm sure that speaks for itself. I bet the traffic here is like a cakewalk compared to the traffic I have heard about in the Philippines but, I tell you, I wish I had $1 for all the stupid things people do in front of my 80,000 pound capacity 18-wheeler!!!!
I hope I gave you a clearer understanding to what you wanted to know. I'm sorry for the late post, I'm just super busy at work and I usually spend my free time resting and catching up on life!
Oh and by the way, my lips are good again after the sickness past. It took like 3 weeks but, here I am again with no buildup, no tightness and my lips looking/feeling normal again. Like I stated before, this is definitely more of an autoimmune/immune/digestive thing for me personally.
You're welcome, I hope you continue to strive towards using good grammar within your writing.
But hey man, listen, I was in your shoes one time. I had no-one to turn to in regards to this. Heck, I spent like 18 years being in the dark about it. Yeah, for 18 years I didn't know this condition even had a name! I had super blown, horror movie, zombie type EC. I had suicidal thoughts galore because I felt so damn gross. I also hated at how some people used to look at me and then immediately lick their own lips as if to tell me with their body language that, "hey, you got some crusty ass lips man."
There were times when the train couldn't come fast enough so that I could sit in a corner and hide. I particularly liked the winter time because I could cover up with a scarf.
I remember the first time I went to a hospital. I had full blown EC so, I wore a face mask to the hospital. The moment I went into the doctor's office I warned her about what she was about to see. I took off the mask and her face automatically melted into a state of shock & compassion. Then, in an instant, she asked for other physicians to come in and I felt like a damn lab rat, even though I said I was okay with allowing other doctors to come in and see my condition. However, I soon felt very uncomfortable with the whole situation.
They took a biopsy and the inner part of that area of my bottom lip was then scarred for life.
Also, I too had braces, and I was so damn stressed out that I used to pick at my lips with the wires of the braces. Sometimes I used to stab my lips with those wires. Maybe I became one of those people who tried to make an easy form of pain be a way to get my mind off of whatever was bothering me at that moment, I don't know. All I know is that I kind of wished I would have never done that.
But, before I go too far off topic. Let me answer your questions.
1) Yeah, after showering I still had buildup left. Man, I used to talk with my hand in front of my mouth like a damn idiot. But most times I wouldn't even talk to anyone. I would even dress a certain way so that no-one would even want to look my way. So, in short? I became incredibly antisocial. It wasn't until like a decade later that I really began to "man up" about this condition. One year I even spent 6 whole months at home like a damn recluse. It was bad. I wasted so many years of my life hiding from this bulls**t condition.
2) No problem, the oil pulling did help me with other aspects.
3) Yeah, Bepanthen helped me out a lot too. You know, I tried to look for it myself and I noticed that it isn't available. Even the Earth pearls are now unavailable. Yeah, that is an outrageous price for the Earth Pearls. I definitely would not pay that.
4) I was also into bodybuilding myself. I used to use their 100% Gold Standard Whey until I read that they use sucralose in some of their flavors. Sucralose is basically splenda and animal tested research has linked it to: Enlarged liver and kidneys, Atrophy of lymph follicles & Reduced growth rate.
Course ya know, things like this are rather subjective. Everyone is not really equal, and this may or may not harm a particular person over a period of extensive usage. I used to love their banana cream flavor when I did use them. Now I use something that is a bit closer to being "natural."
Yes, one doctor told me that I had a weak spleen. So he did acupuncture. In short? It didn't work, and I stopped going to him. Especially since his hot ass breath used to burn my face. He was a nice guy but, I doubt he had any clue of how to help me. He probably saw me as easy medical pay bait and, I wasn't having that.
Honestly? I suppose anything is possible, but whether that has something to do with EC specifically? I doubt it, because if that was truly the case then, other mucous membranes would be going haywire too.
I used to overdose on medicated blistex ointment. This crap below was one of the initial causes of my EC.
Its horrific ingredients:
Just look at all those chemicals! You might as well use gasoline on your lips. Chap stick didn't even cut it for me.
I think stress plays a big role with EC. Stress has been found to be quite destructive to the human body. Large amounts of stress make the body produce a lot of cortisol, which then causes lowered immunity and inflammatory responses in the body in addition to slowed wound healing. So, yes, it does. The more concerned you get about how your lips look then the more stress you go through. I know EC had me stressed out beyond belief. But given this case, I am somewhat confused because, I am super stressed out at my current job, and yet, my EC is now dormant. Your point about severely depressed people who don't get EC is also valid. We can even take this further and include boxers and other fighters, who experience severe trauma to their lips/mouths and they don't get EC. So, once again, it definitely varies from person to person.
5) Definitely does not hurt to try.
6) Wow, didn't know about all those things. They are definitely unfortunate.
Yeah, no problem. Yeah, don't waste your life on this. Definitely try to occupy your mind with other things. I know it is easier said than done but, it really does help to stay busy with activities, hobbies, or other things.