this place has really quieted down 
soilwork
12 y
2,398
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are you all cured and you just haven't told me? what are you guys doing for your current treatments?- Re: this place has really quieted do... Healing2021
12 y
2,251
This is a reply to # 2,001,350Im going to start doing Longterm's Fibroblast treatment this week as soon as I get everything necessary. And if that doesnt works then I will start treating this as a wound with Hyaluronic Acid and a moisturizer.
I personally dont find it necessary to really post anymore because I dont really have much else to share. In fact the only reason I still come on here at all is because I am still communicating with Longterm about this treatment.
Based on everything Ive been through, including how I got this, my tests, and my treatments, my doctor and I are almost positive this is a wound.
So I will continue to treat it as such, including the Fibroblast treatment for a week or so, then going on to using Hyluronic Acid and a moisturizer, if that doesnt work.
I have never been optimistic about any treatments Ive done, before now. I truly believe that this is a wound and I truly believe that I will be able to treat it, but Im sure it will take some time. Even using the Hydraulic Acid, my derm says it can take months. So thats what i will do.
But at least I finally feel as though im on the right path.
However,
I cannot comment on whether anyone elses condition is the SAME as mine, meaning I could not tell you whether yours is a wound or not. But for MY condition I am almost positive. Which i have never said pertaining to my condition.
- Re: this place has really quieted do... soilwork
12 y
2,354
MoreThis is a reply to # 2,001,353I'm just gonna moisturize mine for a while and see how it goes.
On my top lip, EC used to cover almost all of it, but now its just in the triangle part, and then there is a thin line of EC on the border between inner and outer lip. Bottom lip is still the same.
I am not sure if the moisturizing I had been doing before caused it to clear up on the other areas or what, but the rest of my top lip and the bottom lip don't seem to be changing. I am just moisturizing it with Shea butter a few times a day (or as often as I can remember to do it).
Keep us updated on how the fibroblast treatment goes.
- Re: this place has really quieted do... lipshitz
12 y
2,169
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This is a reply to # 2,001,375For the past month I've been moisturizing with cold-pressed avocado oil, and the past two and a half weeks I altered it to include calendula and Vitamin B-12. Still waiting to determine the effects, but last night went to a Halloween party, ate pizza, drank a lot of rum punch, and no one seemed to notice my lips (I can tell by following their eyes). Tomorrow will be day 9 since I last removed the dead skin.
If I don't post for periods at a time, it's because I prefer to give ample time for experimental treatments and document them before broadcasting them here, where many people in desperation will half-assedly try anything, or accuse people of lying. You can always follow my most recent treatments on the Treatments or Case Histories section of the wiki (the link to which can be found by clicking on my profile pic, for all you new curezone members).
There's at least 100 regular visitors by my estimates that never post. If they shared their stories of success and failure, yes, the forum might feel a bit more cluttered, but we would make much more progress as a group. I suspect that most of those people don't care much for the group, though. Good luck to you all.
Peace,
C.S.
- Re: this place has really quieted do... sirpreis
12 y
2,303
This is a reply to # 2,001,392Not doing any real treatment, so there's not a lot to talk about on my end at the moment.
Also, we've gotten a lot of redundancy over the last few months on this forum, at least it feels like it (could be because the CureZone Forums design is not really optimal in general and also because noone really as a clue what this condition is). And as lipshitz said, there seems to be constant accusing (e.g. people having duplicate accounts (why would anyone do that?)) and criticism for what methods other people are or are not trying ("you're a 'pussy' for not doing this or that"). I know this forum is probably not to make friends (would it hurt though? :-)), but it's also not to criticize people about what they think is the best for them.
Just my thoughts ^^
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- Re: this place has really quieted do... DepressedLips
12 y
2,573
MoreThis is a reply to # 2,001,393I think i'm just going to go back to leaving them alone and just moisturizing them with water every couple of hours, that's when my lips started to look ok and they actually felt good, maybe i just need to give it more time to fully heal so i will be trying that and i'll post back if it works or not.
- Re: this place has really quieted do... Vunk
12 y
2,325
This is a reply to # 2,001,394I'm currently using a kind of repairing cream, antibacterial, hypoallergenic, with Hyaluronic Acid, good tolerance and the most important, very easy to apply, not sticky at all, no need to force to use it.
This EC sucks, I believe, like Healing, mine is due to repeated trauma, then maybe got worse because of lips rubbing, but it's very depressive to see Daniel is at his eighth month in leaving alone method and still get big crusts.
Then yeah, don't know what to share anymore, EC sucks.- Re: this place has really quieted do... DepressedLips
12 y
2,501
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This is a reply to # 2,001,412Yeah I agree, it's very discouraging to see Daniel on his eighth month and his bottom lip still is getting those crusts. His top lip is looking pretty good though but I mean if it took 8 months for just his top lip to get better how long is it going to take the bottom one to look like that? :/
Also Daniel I wanted to ask, I know you're leaving your lips alone but are you still moisturizing your lips with water or are you leaving your lips completely alone? Excluding when you take a shower or brush your teeth.- Re: this place has really quieted do... Healing2021
12 y
2,182
This is a reply to # 2,001,421I dont think that leaving them alone and allowing those big crusts is good for healing. I know for me, having those big crusts caused me to develop staph infection. And I think many other have acquired infection by having those big crusts on them and never using anything on them.
This Bionect that Im using allowed the crusts to build the same as they would without putting anything on them, but the crusts never turned a nasty yellowish color. I think it was the antibacterial properties. That yellowish color may be them getting dirty/contracting infection.
I just dont think that the leave it alone treatment is good for the lips at all. Like you guys said Daniel is on month 8 and still gets big crusts.
I mean who says that keeping the crusts on longer, rather than having them come off easily with moisture, is better? It kind of makes sense but now that I think about it I think allowing them to constantly be moist and allowing the buildup to easily exfoliate causes MUCH less trauma.
When I was leaving them alone, at some point parts of my lips would peel and it would hurt like hell. And the skin underneath would be redder than ever. It was inevitable.
- Re: this place has really quieted do... jsl123
12 y
2,600
This is a reply to # 2,001,438hey guys just thought i would say a quick helloooooo!
been absouletely living it up lately! its been wonderful for about the last month things have been good! sure life is still not normal but iv learnt to try live around this and hope that one day this beast of a thing clears up!!! my lips look litterally 100% good for 90% of the day! ec is literally just peeling dead skin in a vicious cycle for some reason. it keeps pushing through and turnning cells regrowth at an increase rate for some strange reason. if you ;eave the crusts on healing right your prone to get secondary infections.
in reality none of us have a f***ckciningn clue what the f***kk this ec is. everything points to some kind of rare skin condition in my opinion a exzma or something like that.
i have no ideas what to do but im just going to cruze along and try a few derms treatment and hope i hit the jackpot!
what i do is if a bit of skin turns to white and gross i just give it a peel. i wait about 20 minutes after i get out of the shower and then apply my moisturizer very gently to the lips a bam! perfect lips for the rest of the day!
anyways i dont have much time but ill give a detailed post probs next week! just thought i would pop in a say hello and see how everybody is going and to see if anybody has found the majic cure! whihc it doesnt seem like yet!
anyways keep ya heads up and keep going guys! find treatment that make life easy or just hope on the moisturizing roller coster and get on with life!
its really alot better then being stuck in a house!
talk soon! also has ihopethishelps updated lately?
- Re: this place has really quieted do... longterm
12 y
2,157
This is a reply to # 2,001,448JSL,
Yes, skin retains moisture better when it is wet right after you get out of the shower, or it is best time to apply moisturizer at that time.
During the day, do you still get the white gunk on vermillion border?- Re: this place has really quieted do... longterm
12 y
2,186
This is a reply to # 2,001,474Oh yeah, people have tried wound healing ointments like Neosporin and the like.
- Re: this place has really quieted do... Healing2021
12 y
2,156
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This is a reply to # 2,001,601Neosporine isn't very good for wound healing. And I doubt that people gave it real time without peeling. From what I've read on here many people try treatment for a few weeks and then move on.
And like I said I don't think it's a wound for everybody. So if its not a wound, then wound healing won't work.- Re: this place has really quieted do... longterm
12 y
2,247
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This is a reply to # 2,001,602There was also Calendula Officanalis that some people tried. "Calendula will benefit the wound healing process from the inside out by stimulating the natural process of healthy cells and tissue regeneration." However, it increases fibroblasts.- Re: this place has really quieted do... ECParent
12 y
2,138
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This is a reply to # 2,001,609Yea - longterm - my son used calendula from a naturopath - no change with that.
- Re: this place has really quieted do... ECParent
12 y
2,138
- Re: this place has really quieted do... longterm
12 y
2,247
- Re: this place has really quieted do... Healing2021
12 y
2,156
- Re: this place has really quieted do... longterm
12 y
2,186
- Re: this place has really quieted do... longterm
12 y
2,157
- Re: this place has really quieted do... sirpreis
12 y
2,323
This is a reply to # 2,001,438My derm said that the yellowish color is (due to) lymph / lymph water (whatever you call it; I don't know if there is a difference between "lymph water" and pus/sanies). Now that I'm regularly washing my lips with qtips, the qtips get somewhat yellow as well and the lips / crusts are not as yellow anymore (but I don't let them get as thick as before anymore either, so I don't know how yellow they would get if the crusts got thicker).
I also think that having the very thick crusts on the lips can't be good. In my case, the crusts would separate from the lips on a few spots and water would get in from the sides. It would then stay there and start smelling after a while. So not a good environment to start healing really.
Healing2021, hopefully you'll have success with your wound theory. I myself don't really think it's a wound though. It's said that wounds heal better when being moist, but they usually don't stop healing completely while not being moist, do they? But still, good luck and let us know :)
- Re: this place has really quieted do... JayeJaye
12 y
2,404
This is a reply to # 2,001,438Daniel has made so much progress....... yeah it's been slow but when you look at what his lips were to start with it's a definite improvement. I think the leave alone method needs tweaking for some people... and for others it just takes a long time.
And the yellow crusts are not always an infection. It's like when you get a scab and it gets thick and dries and it turns a darker colour.
I agree with you that leaving the crusts on for too long isn't good. Getting them wet in water helps those crusts to come off sooner.
- Re: this place has really quieted do... jsl123
12 y
2,600
- Re: this place has really quieted do... Healing2021
12 y
2,182
- Re: this place has really quieted do... DepressedLips
12 y
2,501
- Re: this place has really quieted do... Vunk
12 y
2,325
- Re: this place has really quieted do... JayeJaye
12 y
2,269
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This is a reply to # 2,001,393I agree with you. I've stopped coming by as much because it seems there was a lot of negativity.
Btw I had to have another account because mine stopped working & the Webmaster didn't get back to my (many emails!)
- Re: this place has really quieted do... DepressedLips
12 y
2,573
- Re: this place has really quieted do... sirpreis
12 y
2,303
- Re: this place has really quieted do... longterm
12 y
2,264
This is a reply to # 2,001,375There are many products to treat wounds, but most of them increase fibroblasts instead of decrease fibroblasts. I am using products that decrease fibroblasts. Perhaps some wound healing products do not fully work because they are still increasing fibroblasts when lips may already have too many to be able to heal.
- Re: this place has really quieted do... Healing2021
12 y
2,070
This is a reply to # 2,001,447I haven't heard of anyone using wound healing products. So to say they don't work is false at this point.
Also I don't think that they would work for everyone. I don't think that this is necessarily a wound for everyone. For those who just woke up with it one day, I find it hard that their condition is a wound. But for those like me, who clearly got this after excessive biting, I think it's by far the most likely theory.
My derm recently made the comparison to a callus or the bottom of your heel. It constantly gets rubbed and is constantly under trauma so the skin thickens up an forms a callus. And it is possible to get it to stop, but it could take time.
Anyways, the only "treatment" I have heard working for more than one person is to allow the lips to heal by themselves. Whether it be with moisture or not. And all of those cases have been lip biters. And although a few of the cases lately, such as Kunfuzed, haven't been that well documented, I find it hard to believe someone who go out of their way and put effort into coming on an EC forum and lying. Especially those who know what it's like to have EC.
I have been skeptical in the past too but when I really thought about it, it's ridiculous. It's just being paranoid.
- Re: this place has really quieted do... Healing2021
12 y
2,070
- Re: this place has really quieted do... lipshitz
12 y
2,169
- Re: this place has really quieted do... soilwork
12 y
2,354
- The FB group & my treatment which is... singh94
12 y
2,358
This is a reply to # 2,001,350Also consider joining the fb group on ec:
http://exfoliativecheilitis.blogspot.in/p/join-fb-group.html
And with regard to my current treatment plan, you can check out the post i wrote a few days ago:
//www.curezone.org/forums/fm.asp?i=1998067#i
( and by the grace of God its been a month now & i still dont get anymore peeling or crusting but i am still on the treatment plan as mentioned in the pdf document.)
More
- Re: The FB group & my treatment whic... longterm
12 y
2,140
This is a reply to # 2,001,742How long do you plan on applying the Tacrolimus? I did not know it is a drug used to prevent rejection in people who received organ transplants. Those people usually have to take those drugs for rest of life.
- Tacrolimus 0.1% w/w singh94
12 y
2,276
This is a reply to # 2,001,773Hmm.. until my derm wants me to use it..
I have actually reduced the frequency of it over some time. Previously i applied it on every alternate day, now i apply it twice in a week & I thank God that still things are going on well.- Re: Tacrolimus 0.1% w/w Vunk
12 y
2,122
This is a reply to # 2,002,083Tell us how your lips will be when you'll have stopped applying stuff on them.
By the way, how do you think your EC started? Were you a lip bitter or picker, did you do compulsive lips rubbing, all that because of stress? Thanks.- What might have caused my EC. singh94
12 y
2,373
This is a reply to # 2,002,086Hmm.. My current derm says that i got EC because of applying a strong topical steroid (BETAGEL(Betamethasone Dipropionate Gel) Betamethasone Dipropionate IP equivalent to betamethasone 0.05% w/w) on my lips for about a month.
And i do remember having picked/bitten my dry lips even before applying the steroid.
- What might have caused my EC. singh94
12 y
2,373
- Re: Tacrolimus 0.1% w/w Vunk
12 y
2,122
- Tacrolimus 0.1% w/w singh94
12 y
2,276
- Re: The FB group & my treatment whic... longterm
12 y
2,140
- Re: this place has really quieted do... Healing2021
12 y
2,251
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