Another vicitm 
Johnnnnn
7 y
5,758
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Hey Guys,
well so 3 years ago i used to take pills that should cure my acne. These pills dry out your skin to prevent any formation of pimples. Unfortunately i ended up having EC.-i have to add that i never had these crazy yellow crusts or spots on my lips, but it was still pretty bad- I started to apply Aquaphor which was the only thing that helped. Since that my lips dont actually peel anymore, BUT my skin is still not "normal". It is hard to explain, but on my bottom lip there is a section where the skin is not connected to the regular lip. It feels sooo fragile and every time i stop using aquaphor or coconut oil this skin starts to get dry and the surface looks more like crumbly plastic. It drives me crazy because it always feels like there is some sort foreign substance on my bottom lip. When im at home doing nothing and just apply aquaphor and coconut oil they actually look fine but once i start to talk alot or eat the effected area on my lips starts to freak out. The photos below dont look as bad as in rl because of the lightning.I hate being alone but since EC I avoid every single social event. I used to be the most outgoing person and know my life starts to break away. I need help!!!
Like I said my lips do not look like most of the photos on this forum showing lips with enormous crusts. My lips are tight AF and just look burned or something.
I hope that someone maybe has an idea what could cure my condition.
- Re: Another vicitm Gdizzle
7 y
5,425
This is a reply to # 2,349,464Hey John,
I'm sorry to hear of your struggles with EC.
I have a condition fairly similar to yours and have been battling it for over 3 years now.
A lot of people on this forum are looking for the 'miracle cream or cure' for this illness but i'm sorry to say for most of us that just dosen't cut it.
If your really truly want to beat this you have to make some lifestyle changes from: eating, sleeping, exercise, daily sunlight, no alcohol/smoking.
E.C seems to be caused by internal problems such as Candida infections or other fungal/viral infections in your internal organs. Its seems very unlikely that the cause is simply a lip allergy or infection, the problem is usually much deeper rooted.
One thing i would strongly suggest is to make super smoothies or pancakes in the morning.
Im taking - chia seeds, Golden Flax, LSA Nut Mix, Acai berries, Goji Berries, Natural greek Yogart, Manuka honey, Spinach, Avocado, eggs, cinnamon, strawberries, coconut oil.
i Also did a colon flush ( 2 separate days/4 days apart) at the start before my diet/cleanse/exercise using Oxy power.
I've made more progress in the last 3 months of this regime than the entire previous 3 years. My lips are damn near healed and i barely even get the white marks from water anymore.
Whatever the cause, if u only give your body good nutritious shit and remove all the unnatural sugars and toxins, your giving you body the best possible chance to be free of this f***ing illness.
Everyday i think towards the future and a life without E.C
Everyday i feel positive and energised because i'm finally taking action against this motherf***er.
Dnt let it take anymore of your life away than it already has. i know all too well the feeling of just waiting and waiting for them to heal, trying every lip solve, cream, ointment under the sun. None of it did shit rather than mediate the problems.
You have to fight it with you body.
Hope this helps,
All the best
G
the coconut oil is great (anti fungal properties) and the aquaphor- Re: Another vicitm Johnnnnn
7 y
5,254
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This is a reply to # 2,349,533First of all thanks for your reply. It feels good to be heard somehow, even if its just online.
Since i started using Aquaphor i never had white lines or any peeling circles anymore. They are not cured because once i would stop applying Aquaphor it would start to peel again. I would be fine living with Aquahor if my lips would not be as tight and weird looking.
Besides Aquahor every single cream made things even worse so i have to keep using it.
The big issue is that i actually eat very healthy and i dont smoke/drink or eat unhealthy food. So this wont cure me... unfortunately. I think that my kind of EC is not curable at all, so Im thinking about a Lip Reduction to reduce the effected area on my lips. Right now i think its the only way to get rid of it - just to cut it off literally.
But anyway thanks for your suggestions, i really appreciate it.- Re: Another vicitm Gdizzle
7 y
5,287
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This is a reply to # 2,349,538hey again,
Wow thats quite an extreme option to take, I'm no professional but if something is causing the problem with you lips its unlikely that cutting it out will work.
After uve obviously used (sterioid creams/ antiviral/fungal ointments) so you would think that anything caused by the outer layers would be dead.
do you exercise?
- Re: Another vicitm Johnnnnn
7 y
5,325
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This is a reply to # 2,349,578My EC was a result of my Acne treatment so it was not caused by an infection/candida...
I just feel so hopeless. All i want is my life back, all my friends, a relationship. All this is not possible until i get rid of my EC.
Getting a lip reduction could also work because my EC just affects a certain area on my lip. On the bottom line there is still some unaffected healthy skin.
I know it is a very drastic solution. But seeing all these people on this forum having EC for over 18 years. I could not take it.- Re: Another vicitm haugheyd3
7 y
5,203
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This is a reply to # 2,349,587Had a similar issue 20-15 years ago. After seeing many professionals and trying all kinds of treatments (I did it all - biopsy, injections, Rx topicals, diets, total isolation, etc.) ,I was eventually prescribed Lamprene (this was after seeking out the best expert on this topic who was at John's Hopkins. Dr. James Sciubba. I drove to Baltimore from NYC to see him for several appointments). I was on this oral treatment for multiple years and it got my issue under control before I stopped taking it. I would've probably continued taking it, however my new PCP suggested I stop to see if I still needed it. After I stopped taking Lamprene, my condition was under control. Still I have dry lips and carry vaseline with me, but far far far improved to the point I don't think about it at all.
- Re: Another vicitm haugheyd3
7 y
5,203
- Re: Another vicitm Johnnnnn
7 y
5,325
- Re: Another vicitm longterm
7 y
5,371
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This is a reply to # 2,349,538Someone who had the EC lip area cut off was sorry because it resulted in slimy and tight lips 24/7. This person preferred EC lips to this. I don't know how many years ago the post was written, but you may not want to have the surgery after reading it.- Re: Another vicitm Johnnnnn
7 y
5,375
Lugol’s Iodine Free S&H
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This is a reply to # 2,349,586Well i already have tight lips 24/7. And yes i can remember the post about the lip reduction that went wrong.
Not to be rude but when it comes to plastic surgery people tend to trust the wrong doctors, pay way to much money and there are several cases where aesthetic interventions went wrong, even without Ec or any skin diseases.
Im living in Munich with a lot of high qualified doctors. But im still not sure if i want to do it.
Otherwise its unlikely that this will be cured one day so surgery could be an option. Furthermore it is a chance and considering my Depression i dont think i have a choice. Because living with EC forever is not an option
- Re: Another vicitm Gdizzle
7 y
5,793
RR Educational
Lugol’s Iodine Free S&H
J.Crow’s® Lugol’s Iodine Solution. Restore lost reserves.
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This is a reply to # 2,349,588yes your right that your E.C was caused by your Acne treatment, but it was not the treatment entering your body that triggered the E.C.
it was the way it changed the chemical composition and balance of (healthy flora, bacteria) inside your body.
problems with your lips are usually directly related to problems in your stomach.
so not only do u risk the obvious in that your lips wont get any better after surgery. (high chance of worsening the problem, in respect of previous failed attempts by other members)
U are also not addressing the real problem with will no doubt come back to bit you.
i'm just trying to help and i understand the desperation to get rid of E.C but i'm sure there is plenty more u can do besides cutting your lips out which seems like completely madness to me.
- Re: Another vicitm Abd44
7 y
5,260
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This is a reply to # 2,349,593There are a lot of people in this forum similar to you. Their EC started after taking some Acne medicine. Just because there are people with 18 years of EC doesn't mean you will have it for that long. We have seen so many People in this forum who have been cured using various methods. I am 100% convinced that EC is a result of imbalance in the gut flora caused by prolonged use of Antibiotics . Avoid all sugars (artificial and naturals like fruits), cut out all grains (wheat, rice..), avoid all diaries except for plain organic yogurt (made with whole milk. you should eat at least one cup a day), avoid starchy vegetables like potatoes, yams, carrots, beats etc for two weeks. I am confident that you will see results. please drop the idea of cutting off your lips.- Re: Another vicitm Johnnnnn
7 y
5,382
This is a reply to # 2,349,627Besides a few rare cases, literally no one is cured. Also most of the "im cured" threads are just misleading titels or claim to be cured by the left-alone method. Daniel Miller got cured by using Aquaphor?! (His EC is also very different in comparison to my lips) All these success stories are so random and never work out for me.
The reason for my Ec could be EVERYTHING. I dont even know where to start. Everyone has a diffrent theory glutenfree, Antibiotics , burn cream..... its like looking for a needle in a haystack. Who has the time and money to try every single option?
Most of us are still here hoping for something that cures this condition for the long term. And now im even more frustrated because you think surgery is not the right way.
This is a nightmare:(
- Re: Another vicitm sirpreis
7 y
5,506
This is a reply to # 2,349,646For how long have you had this condition?
It may sound "stupid" and you may think "it's not going to change anything", but you may want to consider getting some professional psychological help.
I have had this for almost five years now. I was already married when I got this, so I guess that's a plus, but it hit me very hard back then (and still does). I had suicidal thoughts regularly, especially during the time when I did the "leave them completely alone treatment", which was about half a year back in 2012.
Since then I got psychotherapy, and I have continued on with a somewhat different life (less social activities) and since then I have even become a two time father.
I have to add that for the past 1.5 years, my condition got a LOT better, which I don't know the reason for. About two months ago EC hit again, my condition has gotten a lot worse, basically out of the blue. It's again affecting me dramatically psychologically, but I try to have a positive outlook, as hard as it is.
Surgery of the lips would actually be the last thing I would ever consider. I don't think it would help, and the chance of it making things even worse is probably quite high.
Sorry for the long post. Not sure if it is of any help. Just wanted to let you know that I think getting some psychological help is a very good idea with this condition.- Re: Another vicitm Johnnnnn
7 y
5,213
This is a reply to # 2,349,650Thank you for your reply.
Well as long as EC is in my life i wont be able to be 100% happy so i guess as long as psychological help does not cure this condition it wont help me haha.
Anyway talking about surgery its just a very easy conclusion for me: no lips -> no ec
And afterward you could eventually get your regular lip size back with lip fillers.
As long as i wont find the roots for this disease i just care about the symptoms.
Also it would be very interesting to see the lips of the persons who said that there lip reduction went wrong.- Re: Another vicitm sirpreis
7 y
5,346
This is a reply to # 2,349,653I completely understand. It's that "desperation mode" I know all too well. But still I don't think removing the lips would be a good approach. Who says that it won't feel just as bad or even worse than now? Who says that removing/reducing the lip area will get off the inflammation?
Have you talked to a doctor about maybe trying something like strong immunosupressive drugs, like Cyclosporine or something like that?
At least one person seems to have success with that (I believe she was/is using Gengraf and an anti depressant). That might be something that I might try next if my current "approaches" don't result in my condition going back to it's somewhat dormant state.- Re: Another vicitm Johnnnnn
7 y
5,225
This is a reply to # 2,349,655No i never tried this.
I guess thats another point on my never ending "what might cure me" List.- Re: Another vicitm Gdizzle
7 y
5,195
This is a reply to # 2,349,676Hey John,
you words ring so true with me that you wont be 100% happy till E.C is gone. You have to accept the fact that u may never be able to get back to happy, free place you were before E.C. It takes much more out of you mentally that physically and that is where the real battle is being fought.
Seeking phycological help can be very beneficial and if it makes you feel any better about you mental state i suffered a psychotic episode bought out of the stress, anxiety and paranoia E.C caused me when i 1st got it.
I always thought that once this f***ing thing is gone, my mental state would come back very quickly. I never really thought having a better mental outlook, capacity to handle E.C was worth much investment as its the physical problem that causes the mental one.
Even so, recently i started to understand that keeping stress levels, sleep patterns, anxiety and feeling on edge the whole f***ing time at bay, makes a huge difference in reducing the physical problems.
There lots of evidence of ways imbalances in the body can effect you mentally as well as vice versa, so starting to feel more positive about E.C will benefit your other symptoms.
The best advice i can give you is to start taking measures against E.C There are so many things online and on this forum about how to fight this thing and whatever the cause of ure E.C, we all have varying degrees of the same condition, so i cant hurt to try where others have had success.
(I do not recommend the leave alone methods - f*** that shit for a laugh)
Some suggestions
Chewing Garlic,
Brush tongue with legit Sea Salt
Gargle legit Sea Salt ,
Apple cider vinegar/honey drink at night
Digestive enzymes
probiotics
Epsom Salt Soak
More anti fungal/ antioxident foods/ fiber - less unnatural sugars, carbs
grapeseed oil extract.
try some new/ as natural as possible lips solves/balms. i Use Aloe Dent - multi action Aloe Vera and swear by it but everyone has one they prefer.
Aquaphor is good but is very thick on the lips and for me personally dries out way too quickly.
Hope this helps
All the best
G
- Re: Another vicitm Johnnnnn
7 y
5,244
This is a reply to # 2,349,700Thanks for all your suggestions.
I will try some of them and hope for the best.
Im going to the doctor one more time today and will test if I may have candida.
In the past i consumed a lot of Antibiotics because of my tonsils so maybe this could have something to do with my lip disease.
When i wake up and apply some Aquaphor they look almost like normal lips (or they just look quite normal to me because im used to how they look haha), i wish they would just stay like this throughout the day. Its so ironic that today you can cure basically everything besides a few diseases but when it comes to peeling lips no one has a clue.
- Re: Another vicitm Johnnnnn
7 y
5,244
- Re: Another vicitm Gdizzle
7 y
5,195
- Re: Another vicitm Johnnnnn
7 y
5,225
- Re: Another vicitm sirpreis
7 y
5,346
- Re: Another vicitm Johnnnnn
7 y
5,213
- Re: Another vicitm haugheyd3
3 y
2,588
MoreThis is a reply to # 2,349,646I was cured by treatment with oral medication Lamprene/ Clofazimine. dave@coupentertainment.com
- Re: Another vicitm sirpreis
7 y
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- Re: Another vicitm Johnnnnn
7 y
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- Re: Another vicitm Abd44
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- Re: Another vicitm Gdizzle
7 y
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- Re: Another vicitm Johnnnnn
7 y
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- Re: Another vicitm Gdizzle
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- Re: Another vicitm Johnnnnn
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- Re: Another vicitm Pariah34
7 y
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This is a reply to # 2,349,464I understand your frustration, but at the same time, since yours is a milder case I don't think those extreme measures is the right call.
I would do diet elimination or something else.
I have it a lot worse, which has really crippled my self-esteem, and I couldn't even imagine having surgery like that.- Re: Another vicitm Johnnnnn
7 y
5,309
This is a reply to # 2,349,622Well i guess im the only one who is thinking about surgery. But what is your plan? Im not quite sure if this condition affects you in the same way as it does in my case, but it ruins my entire life. And even if there is a way to cure it i wont find it.
So i dont know how you guys want to continue? Just to accept the fact that you will never be able to live a normal life again, isolate yourself completely and live on your own?
- Re: Another vicitm Johnnnnn
7 y
5,309
- Re: Another vicitm Gdizzle
7 y
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