JSL and Others 
Healing2021
12 y
1,405
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For JSL and others like Sirpreis who are currently treating this as a wound-like situation or aren't really using medications at this point,
I haven't really read of people on here keeping their lips moisturized/protected using something like Vaseline, and refraining from peeling their lips and allowing them to exfoliate on their own (for a long period of time)
And it has now been quite a few doctors who think that this could be the answer, so for those of you that are keeping them moist/protected, MAKE SURE you are not manually peeling them. This includes wiping off the "white gunk".
I've been told that this would still take awhile (possibly months), but it would be much easier to do than completely leaving them alone and letting them build up.
Even when I was peelin them off manually while using Vaseline, after awhile the skin underneath wasn't quite as red and irritated as it was in the beginning.
So for people who aren't really currently using any medication, I think that this hypothesis is probably our next best bet and possibly our last hope.
As I've said I have spoken to a doctor who has seen his and said it was treated this way, and she is a very well known And well respected derm. And when I first called her to describe the symptoms, before I could even finish, she "diagnosed" it as this condition that is commonly called EC, with NO hesitation.
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- Re: JSL and Others Healing2021
12 y
1,412
MoreThis is a reply to # 1,988,455She also said that the skin exfoliating constantly is NORMAL, so although we always think of the skin exfoliating as causing trauma, it may not be. As long as it exfoliates on its own.
After all, even with leaving them completely alone, the crusts still exfoliate continually.- Re: JSL and Others danielxmiller
12 y
1,447
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This is a reply to # 1,988,458That's what I attempted to do after my first trial with leaving them alone but I became upset and embarrassed and didn't have the strength to do it. However for me baseline appeared to make it worse and caused unnatural peeling. As in deeper and redder when I first tried it by not peeling it with the application. Do you think there is anything that would work better and safer for the lips.? Perhaps something that isn't an oil byproduct and more natural that won't cause premature peeling? Or do you think I just didn't do it long enough back then?
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- Re: JSL and Others Vunk
12 y
1,420
This is a reply to # 1,988,490I think we could need a combination of several products. On one hand a moisturizer to enable the flakes to come off without accumulate crudely, but on another hand there is surely something to reduce the excitation of the superficial cells we fueled during a long period.
- Re: JSL and Others Healing2021
12 y
1,324
- Re: JSL and Others Vunk
12 y
1,436
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This is a reply to # 1,988,537I mean our lips have been damaged for a long time and when we began to see flakes it was already too late, our EC area was already irritated and flaked faster than normal. There is surely a product which could calm down this cellular excitation, corticoid among others -in that way, we can also say that we didn't apply it correctly-, besides the application of a moisturizer, because this is surely not just a matter of 'hydratation'.- Re: JSL and Others jsl123
12 y
1,317
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This is a reply to # 1,988,555well im doing a few combinations at the moment. and yes i was thinking of maybe going on a mid-term drug that reduces inflammation so the deeper cells in my lips can settle down abit. maybe a steriod based tablet.
in regards to healing and making the skin peel off pre maturely while moisturizing. if you just carefully put on any cream like vaseline. the flakes just fall off. i dont even have to force them off. my derms said its fine. the skin will never stop growing. there hoping kinda like what your doctor said that keeping it in the right environment and keeping it moist it might just one day go into re-mission.
- Re: JSL and Others soilwork
12 y
1,304
This is a reply to # 1,988,606Hey JSL why did they say to put gauze on your lips? what is the purpose of that?
- Re: JSL and Others Healing2021
12 y
1,287
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This is a reply to # 1,988,615JSL,
Yeah but the point is, if your lips peel off that easily they are probably ready to exfoliate. She said that it is normal for them to keep exfoliating as long as your not forcing it.
What I mean by not peeling them prematurely is peeling them when it hurts to peel them off.- Re: JSL and Others jsl123
12 y
1,484
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This is a reply to # 1,988,618oh ok well then nah i guess mine just flake off like vunks every day. its weird but you know what can i do. if i have a shower like normal they just all fall off. or if i put the cream on with my finger really carefully they just fall off. - Re: JSL and Others Healing2021
12 y
1,364
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This is a reply to # 1,988,618And I take it you have already given up on the Aldera?
Just because they didnt find a virus in your biopsy doesnt mean that Aldera couldnt help. Modulating your immune system should be able to help a lot of things I would imagine.
- Re: JSL and Others jsl123
12 y
1,484
- Re: JSL and Others jsl123
12 y
1,451
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This is a reply to # 1,988,615gauze soaked in saline water. i dont know they said said its a method that do with wounds. it makes no air get onto the affected area for a while and also traps cleans its the whole idea is to keep the wound and affected skin bacteria free. so the skin can re heal. i guess its just a method. the only thing is when i do it the white gunk sticks and when i take it off it sticks to the gauze.
they say that white gunk is just an immune response. as in the immune system knows that there is a problem and its trying to repair it. they also said thats what the yellow and the clear fluid and all that crap. is just the immune system responding. but i dont know really. i thought it was infection but clearly not. maybe we have exzma on our lips. the unlucky rare "ones" chronic crusting and flaky skin. fluid oozing, inflammation etc etc
who f***iningggg knows!!!!! all i know is their lips so im going to get something to keep the inflammation down and keep the moist and stop them from major crusting. and hopefully one day it goes into remission like a few lucky people that it just vanished for.- Re: JSL and Others jsl123
12 y
1,416
This is a reply to # 1,988,619no id efinatley havent given up or forgotton about alddera. immiquimoid gives your immune system a massive boost and wake up call so it could work for some people. im just nervous what happen to lilloooo????? i think its weird she just stopped posting. and also im waiting to see how it works for you and the other 2 people that are going to give it a try.
i honestly think this method im doing now might work. it might work in 1 month or 6 months who knows what i do know is my lips feel amazing i can walk out in the public talk to girls. the inflammation keeps going down each day. i can eat realatively normal. the only bad thing is i get the tiny bits of white gunk on the very inner parts of my lips wehihc im trying to figure out why! and of course i have to walk around with shinny girly lips but way rather that then f***cing crusts. the ointment they have me using is similar to vaseline its made in aus and its called dermeze ointment.
the derms said this is the best for crusting and dry skin. they said its safe and has no irritants in it and said i can use it my whole life if i want to. they also said for some people its completely normal to apply lip balms or a moisturzer to their lips. they said some people just get dry lips easily they said its exaclty the same like girls who have to moisturize theor face skin or their leg skin. its completely normal they said some people just have sensitve dry skin thats needs to be moisturized daily.- Re: JSL and Others jsl123
12 y
1,293
This is a reply to # 1,988,635healing i think i could live the rest of my life if my lips stayed like this i mean sure it would get annoying sometimes but i actually think i could find peace and happiness in my life. i guess aslong as i can talk to babes and smile and kiss a girl and not have completely noticable gross lips i could move on.
in regards to applying a moisturizer becasue the lips continuely exfoliate the ders said its crucial that i always apply a moisturizer becasue the lips are so raw and trying to re heal its crucial that they have a protective barrier to keep out infections and what not.
its funny becasue i never ever have tried this method i think i didnt it at the start for about 4 days. but keeped freaking out becasue i thought i had some sort of infection.
im just glad this ec isnt contagious and i cant wait to kiss another babe and get jigggyyy wiggy!!!!!!!! ha- Re: JSL and Others Healing2021
12 y
1,249
This is a reply to # 1,988,637So what exactly are you doing? Please tell us everything.
And do your lips look different now than when you used to moisturize them and just peel them everyday? - Re: JSL and Others longterm
12 y
1,284
- Re: JSL and Others jsl123
12 y
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This is a reply to # 1,988,639healing ill upload some pictures during the week.
did you check out dermeze ointment what are your thoughts on it and its ingreadients you know im not that great with all that info.
im just literally keeping my teeth and mouth in good hygine. im cleaning my lips 3 or 4 times a day with saline water. and im applying this gel and this ointment dermeze 3 times a day. i can see the skin now trying to grow back and heal like normal skin. and i think this is the best chance for it to go back to normal unless someone find the majic 2 week cream. the derms said leaving those crusts on actually promotes bacteria and fungal and bad bugs to grow and actually delays healing. but i guess no one really knows
longtom in regards to smile i have alot more movenment. i have tried cracking full smiles becasue i guess im not use to smiling normal and im abit nervous it might hurt. so ill slowly start trying to smile again. i think vunk says he smiles and does things normal again. and i think all he does now is apply a moisturizer all the time.
- Re: JSL and Others Healing2021
12 y
1,316
This is a reply to # 1,988,642JSL,
Sounds good you should keep that up.
But I would try to refrain from smiling and stuff. Even though its hard, your should still try to keep the skin from peeling as much as you can. The woman who told me about this STRESSED that the most.- Re: JSL and Others danielxmiller
12 y
1,436
This is a reply to # 1,988,646I wanted to comment on a reply several posts ago about peeling the skin off, I've never once peeled the skin off and it hurt, it always came off without issue, maybe on a few rare occaisions would I actually pull of the skin and it caused paid, the stuff I used always made it come off with ease...just wanted to put that out there, do you guys have pain when you peel ur lips??
- Re: JSL and Others Healing2021
12 y
1,352
This is a reply to # 1,988,652Not that it would hurt, but sometimes I would peel it prematurely and I could just tell it wasn't completely ready to come off.
What I mean by not manually peeling them off is just not touching them at all. If parts come off while you eat, drink, etc. then you just leave the other stuff on. I mean just don't touch your lips at all and try to let them peel as little as possible.
- Re: JSL and Others Healing2021
12 y
1,352
- Re: JSL and Others danielxmiller
12 y
1,436
- Re: JSL and Others Healing2021
12 y
1,316
- Re: JSL and Others jsl123
12 y
1,469
- Re: JSL and Others Healing2021
12 y
1,249
- Re: JSL and Others jsl123
12 y
1,293
- Re: JSL and Others ECParent
12 y
1,410
This is a reply to # 1,988,619Hi JSL - glad you are out of the hospital - too bad they werent able to find a cure - but at least you cleared up some things there - i had a question on the saline/gauze - how do you keep it on your lips - does it just stick?
- Re: JSL and Others soilwork
12 y
1,376
This is a reply to # 1,988,654JSL: you wrote:
and im applying this gel and this ointment dermeze 3 times a day.
So you are applying 2 things? a gel and an ointment? What is the gel? and what is dermeze?
Thanks- Re: JSL and Others jsl123
12 y
1,488
This is a reply to # 1,988,663dermeze ointment google it. the gel im unsure of its unbranded its for like wounds
- Re: JSL and Others jsl123
12 y
1,488
- Re: JSL and Others jsl123
12 y
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This is a reply to # 1,988,654i just soak the gauze in saline abit and then apply it to cover both my lips and let it sit there for 7 minutes then i do it again wiht a fresh guaze and saline for 5 minutes. althought sometimes the skin peeles and the white gunk comes off with it. so im goign to try for a few days just rinsing my lips with saline water 4 times a day. im unsure yet so im still trying to figre out whihc one is better. iv learnt that leaving the saline on after stings so once i finish doing the saline method i just rinse my lips with fresh cold water for about 30 seconds then leave it for about 2 minutes then apply dermeze ointment. whihc i keep in the fridge its really sotthing when it goes on becasue its cold. i dont know much about dermeze ointment or the ingredients in it but thats what the derms told me to use for moisturizer. it works great on extremely dry and crusting skin. so im just going to give it a shot.
its the white gunk that comes out on the inner inner part of the lips whihc is frustrating. i dont know if i should remove it with the gauzes or just apply the ointment over it and let it fall off when its ready. i mean if i go back to work and what not i wont be able to just leave the gunk on there. its not alot whihc is good. ill upload some pictures.
this might sounds ggay but if i was a chick and got ec it wouldnt even bother me. sure it would be annoying but i mean heck what girl doesnt walk around with glossy lips just find an ointment or moisturizer that makes your flakes fall off when you brush your teeth or have a shower.
and also my inflammation has gone down alot whihc im really happy about!
anyways im actually going out car hunting!!!! first step of getting my life back.- Re: JSL and Others jsl123
12 y
1,372
This is a reply to # 1,988,664i dont know if this will work. its way to early but i know that there are some of us like me and vunk that if we apply some moisturizers like vaseline or something our flakes fall off easily.
but this time ill be doing combinations of regulary cleaning and applying it a few times a day so it might just heal who knows.
what i do know is i need to try live a normalish life and i think if my lips stay like this all the time i will be able to.- Re: JSL and Others Healing2021
12 y
1,525
This is a reply to # 1,988,666What's different about your lips now than before you started leaving them alone and did the same thing (moisturizing and peeling your lips)?
And what is causing the inflammation to go down?
And again I wouldn't peel the white stuff off. Just try to cause as little peeling as possible or they WON'T heal.- Re: JSL and Others soilwork
12 y
1,400
This is a reply to # 1,988,669I can't find a dermeze equivalent for north america...its basically 50/50 paraffin oil and white soft parrafin.
- Re: JSL and Others soilwork
12 y
1,400
- Re: JSL and Others Healing2021
12 y
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- Re: JSL and Others jsl123
12 y
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- Re: JSL and Others soilwork
12 y
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- Re: JSL and Others jsl123
12 y
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- Re: JSL and Others Healing2021
12 y
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- Re: JSL and Others soilwork
12 y
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- Re: JSL and Others jsl123
12 y
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- Re: JSL and Others Vunk
12 y
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- Re: JSL and Others Healing2021
12 y
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- Re: JSL and Others Vunk
12 y
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- Re: JSL and Others danielxmiller
12 y
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- Re: JSL and Others Healing2021
12 y
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