what u think 
danielxmiller
11 y
3,110
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hehehe ps I'm drunk right now lol here a pic :D
- Re: what u think MikePylon
11 y
2,986
MoreThis is a reply to # 2,031,964looking better and better! very close to being healed... you've hit the point where you can pretty much go about your daily life, look normal, and heal up the bit that remains at the same time, and coming from where you came from that's remarkable... i'm at that point as well but only because i caught it early... it's very important to the ec community that you succeeded because you have pretty much become its posterboy with your website... and considering how severe it was this proves anything is possible...congrats and thanks for inspiring hope in many sufferers... it's looking like we've found the answer for trauma induced ec!
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- Re: what u think danielxmiller
11 y
3,218
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This is a reply to # 2,031,972thankkkkkkkkkkkkkkks Mike :) :) :) yeah I think I have...and I was taking a shower tonight It hin kthey might have come off a little bit too early...so hopefully not! But I really hope it doesn't set me back, I was kinda drunk so hopefully I didn't force anything off on accident, lol..oh well that's life right? ANyways workin hard to get it healed we'll see what happens. but Yeah I'm sure we will be healed soon, and yes I do believe this is the answer for us trauma induced victims of this horrible EC!!!! :)- Re: what u think jsl123
11 y
3,017
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This is a reply to # 2,031,980trauma induced ec LoL are you guys serious? weve all got the bloody same condition... it doesnt matter if you got it from trauma licking picking, stress, allergy biting, punched in the face etc etc etc etc once the lips go into this chronic state it becomes this inflammation ec BS condition.. sure everybodies body will react different to treatments. but i think if somebody finds a real treatment that cures them rather then just bang flukey wakes up and leaves it should work for other people with the condition. anyways!!!!!
daniel your lips are looking alot better today :) good to see.. the only thing i will say is everybodies lips will go like that if you keep them moist and have showers and be normal.. i swear vunk and a few others have already told everybody this. if you moisturize your lips all the time the condition isnt as severe as it is when leaving them alone. infact leaving them alone is stupidddd and makes the condition worse. im sorry but i know everybody thought it was the answer and so did i for a bit but lets face it we were all wrong!
its weird how a few people see great improventments with creams like dovonex and that but never fully get cured. iv been reading up on forums and some people exzma and psorosis that have severe shedding skins some luky people it just lears up for them.
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- Re: what u think sirpreis
11 y
3,045
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This is a reply to # 2,031,989You sure sound like you _know_ a lot about EC. :-) Just because we have the same or very similar symptoms, that doesn't mean we have to have the same condition/cause. What makes you so sure that it is the case?
I do agree that there is no evidence that patients that might have gotten their EC due to trauma need to do anything different than patients that got it out of the blue. But, maybe some "out of the blue" patients have some unknown underlying cause that they have to get rid of first.- Re: what u think Healing2021
11 y
2,947
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This is a reply to # 2,031,997Yeah JSL,
You dont know anything about EC. Just like all of us. So dont come on here acting like you know that we all have the same thing. Even your "high qualified doctors" said its likely we dont have the same thing. Your just too stubborn to think any different.
And also at this point your really not contributing anything positive to this site man. Every time I see you come on your just bashing people for their treatments and telling them how it wont work.
Maybe you should listen to these people. Because while they are getting better, you arent.
We all know that when you moisturize your lips, they look better. We arent idiots. So dont treat us like idiots and assume that we think our EC is getting better because it looks a little better.
We have all used moisturizers in the past so I think we know the difference between our lips looking good while moisturized, and seeing actual improvement.
I mean Me, JK, MikePylon, and now Daniel have all seen progress doing this. JK being completely cured and me eliminating my peeling.
And yes we are trauma induced cases, Im not sure why you laugh that off. Its called a CAUSE. And often very important in medicine.
So Im all for people coming on and sharing their thoughts even if they arent ALWAYS positive. But now every time I see you post your just shooting down peoples treatments and ideas and acting like your some "know it all" when it comes to EC.
And also just because its induced by trauma doesnt mean that it isnt some sort of inflammatory response. Many inflammatory conditions can be triggered by by trauma. So before you come on here acting like you know everything, you should do some more research.- Re: what u think longterm
11 y
3,047
This is a reply to # 2,032,023Healing,
I have a question about the moisturizing leave alone treatment. Although my lips look almost normal while moisturizing, my lips go back to EC lips when I do not moisturize. In that sense, I would not call my lips healed if I still need to apply something to make them look normal. Do you sense that you will need to apply moisturizer all day for the rest of your life or your lips will go back to the way they were?- Re: what u think Healing2021
11 y
2,869
This is a reply to # 2,032,030Longterm,
Right now it's impossible to say because I'm not ready to stop yet. And also, I'm by no means healed. Right now, at this moment I think that I need to continue using moisture for the improvement to remain. Because I think it's possible that my lips MAY be still building up a TINY unnoticeable amount on some days.
But even if I have to use moisture the rest of my life and have normal lips ill be ecstatic. But I'm also hoping that I fully heal so that I don't need to apply moisture everyday.
So longterm your saying that you could have normal lips if you moisturized, but that moisturizing your lips is too much of a trade off? If so I would say your insane.
I find it ridiculous that people CONSTANTLY bring this up as such a problem on here. If moisturizing your lips is too much hassle for people to have normal lips then they don't deserve to have normal lips. Like people wont want to have normal lips if they have to moisturize them. God forbid people have to do something as TERRIBLE as that.
It's ridiculous.
And longterm that last bit isn't necessarily directed toward you. Many people have been bringing this up lately.- Re: what u think longterm
11 y
2,869
This is a reply to # 2,032,079The fordyce spots get in the way of my lips looking normal with moisturizer. See, my lips are raw where there are concentrated fordyce spots. So, moisturizer makes the raw area get soggy with new white skin that never forms. Without moisturizer, I do not get that white soggy skin there.
- Re: what u think Healing2021
11 y
2,805
This is a reply to # 2,032,095I see.
Yeah I think your condition and mine are a perfect example of how not everyone has the exact same condition.
Our symptoms are not even that similar in a medical sense.
I have never had fordyce spots or anything like that.
- Re: what u think Healing2021
11 y
2,805
- Re: what u think Sny
11 y
2,795
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This is a reply to # 2,032,079I agree, I've been moisturizing for a long time now and even though it's annoying it's as much a part of my daily routine as brushing my teeth or shaving. Life is full of crap we don't want to do.
- Re: what u think longterm
11 y
2,869
- Re: what u think Healing2021
11 y
2,869
- Re: what u think longterm
11 y
3,047
- Re: what u think Healing2021
11 y
2,947
- Re: what u think MikePylon
11 y
2,951
Lugol’s Iodine Free S&H
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This is a reply to # 2,031,989jsl... it clearly matters how you got the condition... that's why there is such a wide variety of cure stories... some may need to follow a diet or address a disease, others may have to remove a filling or stop using a certain toothpaste, and others may have to leave it alone... also if you saw daniel lips 4 or 5 months in i think its ludicrous to suggest that putting some coconut oil on it would supress that kind of buildup.
- Re: what u think sirpreis
11 y
3,045
- Re: what u think UserX
11 y
2,822
This is a reply to # 2,031,980hey daniel, would you say the coconut cream that your using caused alot of improvements, because you lips look pretty good.
I need to know if its the cream because if so, i would like to try it.- Re: what u think lipshitz
11 y
3,052
This is a reply to # 2,031,990I still think the presence or absence of fordyce spots is likely unrelated to the development of the condition.
Peace,
C.S.- Re: what u think longterm
11 y
2,783
This is a reply to # 2,032,111I am testing this theory now just to make sure. What I am trying to find out is if the raw area on my lip can heal if the fordyce spots diminish.
- Re: what u think jsl123
11 y
2,916
This is a reply to # 2,032,135blasting??? i apologise if you guys think like that but its honestly not the case. i do believe this is a forum and i do believe its a great thing to have different opinions and for us to disagree and see different views if not we would all stay on the same old track for another 10 years with no cure.
and how can you say that was a negative post i commented on how good daniels lips looked and that he was clearly seeing good improvenments. just because most people on here are all positive about everything we post doesnt mean i and a few others have to be. everything i say is of my opinion and that goes for everybody else that posts were all allowed to have opinions. and i was LOL'ing because i do find it funny how a few people think they know how they got ec. howww the f***cck does anybody know that for sure!!! what happens if ec is a form of virus and in 20 years the medical worlld can diagnose it through a simple blood test. people might think they got it from biting their lips or being stressed or what ever but the truth is you cant be sure about that. i mean after all how do you know?
and iv stated previously i dont have a fucckcking clue what ec is and no one has a f***ckcinggg clue what ec is. and when i post everything i post is of my opinion its not fact. im not a doctor, i havent studied medicine, and i dont think anybody on this forum has except one guy that said he had practiced before as a doctor.
This is a online forum. i find alot of posts negative and rude but i just ignore it and move forward. infact healing i find a few of your posts towards people to be very rude especially previously towards a certain person but it doesnt bother me im sure your a very nice person and infact i quite like the strong minded attitude you have and determination i see that as a great thing. but on some of your posts that i dont like i just ignore it and move on because i do know this is a forum and everybody can say what they like when they like. im sure everybody on here is a wonderful person and might just be a bit fraustrated over the condition. after all were all just trying to help figure out this condition so we can leave this forum!and move on with life.
have a great day guys!!! :) and daniel if you thought i was being negative towards you i wasn't you know i appreciate your website and what you do alot!
- Re: what u think MikePylon
11 y
2,880
This is a reply to # 2,032,163JSL, you are entitled to your opinion, but to laugh off the cause as a potential factor in our cures shows an absence of logic when even you have acknowledged that different treatments work for different people. I may be reading into this too deeply, but sometimes it seems as if you are looking for that magic cream because leaving it alone didn't work for you and perhaps you don't have any hope in trying to attempt it again with a different method. I hope you luck out and find the cream you're looking for... some people do, but realize that we have probably heard more success stories of people who who stopped picking their lips than any other individual treatment, and that this may be the way for those of us who got this through trauma.
- Re: what u think Healing2021
11 y
2,839
This is a reply to # 2,032,185JSL,
Believe me I know that I have had plenty of posts on here that can be conceived as negative. As have you. And you know that me of all people can just look the other way. And i believe more than anyone that everyone is entitled to discuss their opinion. And also as you know, i express my opinion as strongly as anyone. So don't think I'm trying to be hypocritical. Because I like people who strongly express their opinion.
Its more of the way youve been doing so. You don't post as much, but it seems like all of your posts now are just telling people that this treatment doesn't work. When you really have no facts to prove it. You haven't even tried it yourself.
And even though I and some others on here realize that this is your opinion, the way you express it makes it sound like you know from experience or extensive research etc.
So I just don't want people to come on and see your comments about how this definitely doesn't work, when you haven't even tried it yourself. You should leave it to the people who have tried it/ are trying it to express such strong statements.
And maybe I'm being a bit more sensitive to the subject because I am currently doing this treatment and it has given me great improvement.
So when I hear people so adamantly question it like "How could you possibly think that works? Everyone has tried it" I can't help but respond strongly. Especially because I don't think people try this particular treatment without causing more trauma (and I assume it only works for people who got this from trauma). So if those like Longterm who didn't, don't see success using this then I don't think that means too much. Since he clearly got this from other causes.
And as far as people knowing how they got this, I don't think it's ridiculous. I used to bite all the time and felt the same tenderness/rawness after I would bite. So right after I knew I bit too much, I could just tell what caused it.
But that doesn't mean everyone can easily know their causes.
And you saying that its hard to tell the cause and there hasn't been a universal cure just supports the idea that we don't all have the exact same condition. If we did then it would probably be much easier to figure all of this out.- Re: what u think mike355
11 y
2,817
This is a reply to # 2,032,191Hey all,
I thought I would chime in here. For the past couple months - especially during the Christmas holidays when I was off of work - I was committed to leaving my lips alone. This included letting them build up and, of course, taking the risk of inducing more trauma from the accidental ripping/falling off of the crusts and build up. This just left deep raw patches of skin that left the lips inflamed.
I believe I began moisturizing my lips the same time as Daniel. My problem areas lie in the inner portion of the lips - not the outer. Both my doctor and dermatologist suggested keeping it moisturized and said the lips would stabilize in a month or two (obviously the dry Canadian winter air I'm experiencing right now is not helping much). My derm said the lips will still peel and build up, but because we're keeping them moisturized, it won't cause any trauma when they do come off. She said the peeling will eventually stop once inflammation is down and the lips have been fully healed.
Anyways, lips look normal, lips feel normal and lips are healing (I can see the affected areas slowly becoming smaller). All while leaving them alone (as in, leaving the build up, which is now only a very thin layer that sits on top of the lip).
I'm using Ceralip lip repair cream which contains beeswax and a few oils (what I don't like about this is that it doesn't have anything that promotes healing, such as essential vitamins). So I've gotten some Aquaphor lip repair cream (which the derm initially recommended - although she said any moisturizer will do) which contains vitamin c and e, as well as other oils that could do the skin good. So we'll see how that goes.
Good luck everyone!- Re: what u think Healing2021
11 y
2,785
This is a reply to # 2,032,431Great to hear
My peeling has gone away but the inflammation is still here. But it seems to slowly be going down. May try a steroid eventually.
Sounds like a lot of people on here are now doing this treatment.
Also it sounds like a lot of peoples dermatologists seem to be on the exact same page regarding the condition.
Actually it sounds like all of our dermatologists who said to do this may have been right all along. And us bashing them on here calling them idiots may have been wrong haha (which I am guilty of).- Re: what u think mike355
11 y
2,858
This is a reply to # 2,032,462So true! And I was too stubborn to go see a doctor or derm for the first 2 months of dealing with this. But then I gave in by mid-January and saw my GP and a derm. The good thing was that they both knew exactly what it was, they both knew it was extremely debilitating (and so didn't just wave it off as being paranoid or something) and both gave me the same advice.
I think one of our main problems (for some of us) is not sticking with a method or a medicine long enough. I remember in November I listened to my roommates and began moisturizing, but because I didn't really know as much about the condition as I do now, I did it for a week and stopped because I didn't see any progress.
So the moral of the story - keep moisturizing. This is going to take months (not a week, not two). My GP said a month, but I think it will take much longer to stabilize.
And I don't think we can determine being cured or not after a week or two of no symptoms. I say this because for me, it's now taking about two weeks for the scabs to form into a visible layer that I can make out.
So time, I guess, heals all.- Re: what u think Evrythngfine
11 y
2,968
This is a reply to # 2,032,467Daniel, your lips look great! I applaud your discipline and fortitude, thank you for putting yourself out there and leading the way.
Mike355 , you made an excellent point regarding switching methods too quick. It is encouraging to know you have made progress with leaving them alone too.
- Re: what u think MikePylon
11 y
2,848
This is a reply to # 2,032,467interesting posts mike....
ancedotally, i find it amusing that canadian derms seem so well versed identifying and treating ec while doctors in other parts of the globe seem utterly clueless...
...maybe the cold climate here has given them a higher selection of patients... or our free healthcare has more people booking consultations for a dry lip condition :p
- Re: what u think Evrythngfine
11 y
2,968
- Re: what u think Vunk
11 y
2,827
This is a reply to # 2,032,462Derms were used to tell I need to constantly moisturize -not very surprising while having flakes btw-, that's not why they knew much about it.
If the first told me it could be a case of factitious cheilitis, I wouldn't be there. There is still a big lack of knowledge about it, not well-considered.
The diagnosis remains hard and still a lot of hesitation before following a concrete trail.- Re: what u think jsl123
11 y
2,919
This is a reply to # 2,032,511i agree with vunk. unfortunately we all thought we were on the right track when leaving them alone only to relise after months and months still not cured or progressive improvenments. in saying this i do think leaving them alone and keeping them moist sounds and is alot better theory. so i will sit on the fence and keep a close watch and see how the results pan out for some of you guys after 2-4 months of moist healing. i think it makes life alot more easier in keeping the lips moist.
healing can we get something straight. are your lips completely stopped peeling??? as in no more or do you still get the occasional white flake. and also now that your lips have stopped peeling has the ec affected part grown normal skin back? or is it still abit raw like skin and sensitive to touch compared to lets say your beautiful normal lip skin which is on the top half of your top lip.
and also do you think your peeling has stopped due to keeping the lips moist or a combination of that and biafine and bionect??? or in your mind which do you think has done the trick? and also are you now at the state were you just apply aquaphor or are you still applying biafine. if my treatment doesnt work i would like to try your treatment i think the mix of biafine would be doing most of the work would you agree or not??? and also if you stopp your current treatment and ec eeturns do you think it would be safe to use those combination of creams for long time treating the condition becasue im at that state were i would do anything to stop the peeling so i can go for a surf and drink some water out of a cup infront of people like a normal person. let us know what your thoughts are
anyways good to hear some of you moist healing people are seeing progress lets kick back and enjoy the ride and hopefully start seeing some solid cure stories.
and also i think its a great point to say that ec will take a few weeks/months of constant treatment.- Re: what u think Healing2021
11 y
2,811
This is a reply to # 2,032,659JSL,
Ive come to the conclusion that my lips have completely stopped building up and peeling. Meaning they look completely normal except for the inflammation which is going down. And they dont go white in water etc. etc. Completely normal except the inflammation.
When I said inflammation I meant that the same area that once built up and peeled still has that reddish, tender skin. But both the redness and tenderness seems to be going down slowly.
And I think it was just keeping them constantly moist and not peeling them that has shown me the improvement. I have ONLY been using Aquaphor for the past few weeks and they have just been getting better. I now 100% believe that this is an inflammatory reaction to me biting my lips and that the constant trauma (peeling) just feeds the inflammation. And in order to bring back a state of normalcy to our lips we need to stop all trauma for an extended period of time. And this is now being said by a bunch of dermatologists which is relieving. And also it seems as though many derms have said this all along but we called them stupid, which may have been unjustified. (Im guilty of this)
And I disagree. Our reaction to this treatment is much different than peoples reaction to the "leave it alone" treatment. Everyone's "belief" that they were on the right track while doing the "leave it alone" was really just being optimistic and having hope. Because nobody was seeing any true improvement (except Daniel over 10+ months). But our reaction to this current treatment is COMPLETELY based on actual improvement, not hopes and dreams. Which makes is completely opposite in my opinion.
- Re: what u think Healing2021
11 y
2,811
- Re: what u think MikePylon
11 y
2,931
This is a reply to # 2,032,511there is a huge difference between moist and dry healing.... the latter causing much more dryness, trauma and irritation.
- Re: what u think jsl123
11 y
2,919
- Re: what u think
- Re: what u think Healing2021
11 y
2,785
- Re: what u think mike355
11 y
2,817
- Re: what u think Healing2021
11 y
2,839
- Re: what u think MikePylon
11 y
2,880
- Re: what u think jsl123
11 y
2,916
- Re: what u think longterm
11 y
2,783
- Re: what u think lipshitz
11 y
3,052
- Re: what u think jsl123
11 y
3,017
- Re: what u think danielxmiller
11 y
3,218
- Re: what u think JamesHarden
11 y
2,845
- Re: what u think danielxmiller
11 y
2,921
- Re: what u think danielxmiller
11 y
2,921
- Re: what u think MikePylon
11 y
2,986
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