This disease is wearing me down... T... 
jsl123
11 y
2,569
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It seems like we just go round in circles... I'm still waiting to see a proper cure from someone.. sure there's lots of people who claim but never back it up... It's not hard to put up some before and after pictures... And I'm positive if someone really cured there ec they would be proud of it and would share their cure story in detail with photos that are actually clear and we can see.. I'm tired of spending my life at doctors and derms... What a waste of life.- Re: This disease is wearing me down.... death2ec 11 y 2,569
- Re: This disease is wearing me down.... Bradbutter
11 y
2,599
MoreThis is a reply to # 2,067,906Right on brother everytime someone claims they're cured they always speak in riddles and leave out information and pictures
yea it is a waste of life especially since summer is here and everybody goes out drinking partying and I am stuck picking dead lip skin off my face and removing white gunk off- Re: This disease is wearing me down.... danielxmiller
11 y
2,905
MoreThis is a reply to # 2,067,953JSL I'm pretty sure you haven't tried one thing that seriously made my build up stop, and that is going out in the sun everyday and getting a lot of sun. Just go and get burnt man, I am almost positive it will help you. Go to the tanning bed if you have to. But I swear I've said countless times what is helping me, and hardly anyone seems to be trying it, and no I may not be cured yet but I sure as hell don't get buildup everyday like I used to. and I don't even need creams on anything but my inner lips anymore, so damn just listen to the people who are here. I mean I post a photo every week, and my lips look good nearly all of the time.
Just go out in the sun, I really think it will help you.
*and it's not a disease, btw. :)
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- Re: This disease is wearing me down.... Healing2021
11 y
2,531
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This is a reply to # 2,067,973Ive definitely been trying to be out in the sun. It helped me last summer even with those big crusts on my lips.
And yeah JSL I agree with Daniel, you dont really seem to be trying anything that people say is working. Or you seem to be trying something for a week or two and moving on. Those two reasons are the main reasons you havent seen much progress.
I mean nobody else seems to be going around in circles here, except you to be honest. Your still talking about eczema! lol. Most other people seem to be trying this moist healing and it seems to be showing progress for most. So Im not really sure where your coming from with this.- Re: This disease is wearing me down.... Healing2021
11 y
2,416
This is a reply to # 2,068,012Also the whole picture thing is completely overrated.Someone posting a picture over the internet means nothing. You can take them at their word or not.
Like the Zyclara. The girl posted a picture of her lips and me and you tried the Zyclara. And it was by far the worst mistake I have made.- Re: This disease is wearing me down.... Healing2021
11 y
2,538
This is a reply to # 2,068,013Im sorry I should say that pictures dont mean a thing UNLESS you document it like Daniel is.
- Re: This disease is wearing me down.... lipshitz
11 y
2,659
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This is a reply to # 2,068,015Pictures are meaningful to many people as an impetus to try something new and risky, and to trust others. Obviously Healing2021 you've made clear that you think people here don't take enough risks -- in spite of your lack of pictures, your longevity and straightforwardness on this site makes you pretty trustworthy in the grand scheme of things. I think many people are still just assessing the risk.
Also, lilo96 only posted a picture of her lips looking bad with a biopsy scar, and never a picture of her lips being cured by Zyclara. I think the whole point is for everyone to see a picture of your lips at their worst when we meet you, then a picture when you are healed. That isn't difficult.
And Daniel, I'm trying to get sun here in the Pacific NW but it ain't happenin. Caribbean or bust this fall! And just a reminder to folks concerned about UV skin damage, shea butter has a ~5 SPF, which is probably good for a short time in the sun. If you want to spend longer you could try a lip balm cocktail similar to this or spend time in the sun when the rays aren't as direct (i.e. not the middle of the day):
100% Natural SPF 15 lip balm
Active Ingredients: non-Nano Uncoated Zinc Oxide (8.0%)
Inactive Ingredients: Olea Europaea (Extra Virgin Olive) Oil (Organic), Cera Alba (Beeswax) (Organic), Theobroma Cacao (Cocoa) Butter (Organic), Butyrospermum Parkii (Shea Butter) (Organic), Tocopheryl Acetate (Vitamin E)
Peace,
C.S.- Re: This disease is wearing me down.... lipdisorder
11 y
2,488
This is a reply to # 2,068,018daniel, i think ur sun theory might be correct because the sun makes our body produce vitamin D and vitamin D is important to prevent dry skin. has anyone tested their vitamin D levels before?
- Re: This disease is wearing me down.... longterm
11 y
2,417
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This is a reply to # 2,068,018I thought JSL tried UV light therapy? How did that work out?
I think many people are low on vitamin D. I am, but vitamin D supplements do not improve my lips. Most black people are low on vitamin D. I must admit that I do not get much sun since I do work on computer inside during daylight. - Re: This disease is wearing me down.... Healing2021
11 y
2,361
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This is a reply to # 2,068,018Yeah but there isnt really any risk in just using Aquaphor and leaving your lips alone.
And in general if people dont want to take risks then thats fine, but it doesnt make sense to me when people are on here complaining about how EC is ruining their life, but then refuse to risk absolutely anything to cure it. And I dont mean huge risks I mean there are people who wont use anything that has any POSSIBLE side effects. Which is everything.
Everyone has the right to their own body but to not use any medication that possible side effects is idiotic in my opinion.
But to each his own.
- Re: This disease is wearing me down.... lipdisorder
11 y
2,488
- Re: This disease is wearing me down.... lipshitz
11 y
2,659
- Re: This disease is wearing me down.... Healing2021
11 y
2,538
- Re: This disease is wearing me down.... Healing2021
11 y
2,416
- Re: This disease is wearing me down.... Healing2021
11 y
2,531
- Re: This disease is wearing me down.... danielxmiller
11 y
2,905
- Re: This disease is wearing me down.... shea78
11 y
2,430
This is a reply to # 2,067,906I have always looked at this forum and searched online for "cures" and other people's experience but I never posted anyting because unless Im gonna complain I didnt have much to ask or say about it .. so I never posted pictures or anything else .. my EC has been going on for about 11-ish years (though at the time I thought it was just severe chapped lips) - my lips never got as bad as some pictures Ive seen .. I never had the build up where it turns yellow and its big and crusty .. mine has always been it just almost "hardens" a layer of skin and then when I got in the shower I could peel it off. This hapepend about every 3 days but was very noticable and Ive always had people make comments about me needing chapstick etc, not understanding that chap stick wasnt going to help me out really ... when I started taking the vitamins (as I posted under "healing really well" was when i decided to post and see if others would know why this was working for me ... so I apologize for being one of the ones that didnt post pics ... it was just something that I never saw getting better and who knows .. maybe this "getting better" thing is temporary for me. currently Im trying to figure out if its the EPO thats helping my lips, which i think that it is, but Ill have to report again in a few days when Ive been off of it for a little longer.
- Re: This disease is wearing me down.... lipshitz
11 y
2,535
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This is a reply to # 2,068,069Thanks, shea78. I think the other reason to include pics is because this condition has different causes and manifestations, seeing someone with the exact same manifestation (having the small triangle or fordyce spots or whatever) is at least a clue that similar treatments may or may not work, or may work for conditions of lesser severity. If you look at seattle's picture which I think is in the Gallery but also on the Case Histories page of the wiki, you can see she had a quite different manifestation of peeling, which helps explain why all her treatments she found here failed her, including emollients, fish oil, steroids and antimicrobials.
Peace,
C.S.
- Re: This disease is wearing me down.... lipshitz
11 y
2,535
- Re: This disease is wearing me down.... JamesHarden
11 y
2,564
This is a reply to # 2,067,906It helped me to stay away from curezone for awhile and think about other things than this. This forum is made to be a support forum so I am not going to put you down, but you are a grown man and sometimes life isn't a storybook senario. My english teacher has terminal cancer and he is living his life to the fullest. I just think we should look at what we have and accept it and try to find a way to effectively deal with it.
- Re: This disease is wearing me down.... death2ec
11 y
2,438
This is a reply to # 2,068,266I respect that your just trying to help but f*** accepting this curse. I'm gonna be crushing pints making out with babes and living life on my terms soon. You ask me the only people who deserve a curse like ec are the ones who try and tell me to manage it and accept it. I will never ever accept it. Ever. f*** ec.
- Re: This disease is wearing me down.... MikePylon
11 y
2,620
This is a reply to # 2,068,266JSL dude, you are always saying the exact same thing.
My lips went from an inflamed building up nightmare, to corpse like, to fully healed back to their original state.
I've stuck around after fully healing and posted pics yet you
keep repeating yourself like a parrot. Many of us have found our own cures but this is not one size fits all.
I don't want to undermine your frustration, but this is a chronic skin condition and there likely will never be one cure that works for every single person out there because we all got this under different circumstances. I got it as a reaction to a harmful procedure (chemical peel). The treatment protocol I used has been successful for many of my derms patients.
So you should probably stop looking for a silver bullet solution or "proper cure" and try to find something that works for you.
Also, I can totally see why people who never posted here much and healed would not stick around... because once your lips heal, you won't think about them at all (like before you got EC). I only post here to the limited capacity I do at this point to give hope to others because I was once a major contributor here. If you heal, you'll see how little you think about your lips or esp online forums regarding your lips.
Best of luck to all,
it can be done.- Re: This disease is wearing me down.... death2ec
11 y
2,552
- Re: This disease is wearing me down.... MikePylon
11 y
2,714
This is a reply to # 2,068,295Hey bud :p
I'm in the middle of a training camp right now and I feel great.
I had my lower lip bloodied up on two occasions while sparring and it didn't lead to any kind of recurrence whatsoever either time.
I know it sounds stupid but EC is probably the best thing that's happened to me. My priorities have completely changed since healing and I have a new appreciation for everything in life I took for granted. I truly hope all of you can experience this because you deserve it for this terrible shit you've had to go through.
- Re: This disease is wearing me down.... death2ec
11 y
2,396
This is a reply to # 2,068,300That's awesome man, glad to hear it! Very heartening to know your not afraid to mix it up full contact with no fear of recurrence. Best of luck man, kick some ass.
- Re: This disease is wearing me down.... Evrythngfine
11 y
2,568
This is a reply to # 2,068,305Good luck Mike! I was wondering, how you are doing with the MMA too! It's good to hear you are doing well. Thank you for the support and best wishes. Thanks to your contribution we are on our way to healing.
- Re: This disease is wearing me down.... Evrythngfine
11 y
2,568
- Re: This disease is wearing me down.... Vunk
11 y
2,614
- Re: This disease is wearing me down.... death2ec
11 y
2,396
- Re: This disease is wearing me down.... MikePylon
11 y
2,714
- Re: This disease is wearing me down.... death2ec
11 y
2,552
- Re: This disease is wearing me down.... death2ec
11 y
2,438
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