Hello and welcome to our small community, WGB. It’s always great to have additional people working on finding a solution to our lip dilemma and it would be interesting to see your compiled research. I’m convinced that somewhere down the road we will find a way to adequately resolve whatever is happening with our lips.
Try not to get too discouraged with everything; until we can get to the bottom of this, it seems like management has been the key to effective coping (most people tend to develop some sort of moisturizing/exfoliating/protecting routine that fits in with their peeling cycl ...
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Hey everybody. I haven’t posted anything in years (still check in every now and then to see what’s going on), but there just hasn’t been a lot to report. Lately, I’ve been feeling very strongly that whatever is happening is autoimmune related.
I’m not sure what it means, but it was interesting that many of us share very similar body types (small bone structure), and that a fair number of people have had other skin issues (red, flaky eyebrows, especially after taking showers, dandruff, little bumps on knees or elbows, etc.). Personally, over the past few years, I’ve had some issues with ...
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Hey everybody :) I’ve been doing a little brainstorming and i was just wondering: does anybody have EC and also not wear glasses or contacts? I know this might seem random, but i would really appreciate a response (was thinking about how UV light activates the production of various compounds in our bodies, how sunlight seems to influence EC, and how almost all contacts/glasses provide almost total UV protection).
Thanks =D [End]
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Hey everybody. Thanks for posting and providing us with some additional information. The coconut oil idea hasn’t been mentioned very much before, and it would be greatly appreciated if you kept us updated with any progress (or lack thereof).
If possible, could you lookup the type of tablet that was also recommended—it sounds like it might be very important (and some compounds work synergistically with each other). This would be very much appreciated and greatly helpful =)
A quick note on the CO2 laser: the type of gas or lasing medium, in this case CO2, doesn’t interact with the actu ...
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Hey everybody. I don’t have much time to write atm, but has anybody looked into Vitamin D? Will expand on this further, but I’ve noticed that my lips are always significantly better after spending the day out with friends (which usually involves getting a lot of sun, thereby aiding in the production of vitamin D). Some other stuff too...
Anyways, check out Wikipedia. It looks like vitamin D has some really interesting immunomodualtory and immunosuppressive effects, in addition to lots of other stuff, and might be worth thinking about.
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If something had perfect efficacy, or we actually knew what was happening, then all of us would be “out of here.” Unfortunately, we haven’t gotten to that point yet; however, the whole idea behind this board is that our chances of finding a solution improve dramatically when we work together and share ideas. Furthermore, it’s not as if we’re just throwing darts—there has been a lot of research and many board members have gone to see doctors, which is, at this point, pretty much all that we can do. [End]
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Hey everybody. Here’s an interesting question that I don’t think has been addressed before: what was it that caused our lips to, for the very first time, turn white (macerated).
Was there some threshold that was crossed, does the body required a certain amount of something to prevent his, is transepidermal water loss related?
Something to think about
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Hey everybody. I’m not sure what’s going on with the site (what’s with the rollback), so I hope everybody is able to get this.
Of recent, there’s been a lot to talk about vitamin C and l-lysine. I couldn’t find the C and zinc combo anywhere (live in the US), and the only liquid capsule with C in it also contained vitamin E and rose hips (potent source of vitamin C). So, I tried smearing that on my lips—it stung and definitely caused an increase in size, followed the next day by the development of a crust and peeling. I’m not sure how important the zinc was in the equation, but, due to t ...
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Holy %#$&^ crap…I’m so glad that you posted this info. I’ve had the same experience on several occasions—correlation, of course, doesn’t prove causation, but it’s pretty damn interesting.
Ok, so when this condition first started, I was moving back home for the summer (back from college). My GF was going to a different school, so we had been apart for a while, but obviously that changed as soon as everybody got back into town. My lip peeling completely stopped for at least 6 months (the process had definitely started before I got back—white skin after coming into contact with water, peel ...
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Hey everybody. I just wanted to mention that the Eucerin cream with urea listed as the second ingredient (dry skin therapy - plus intensive repair body creme) seems to work really well. Over the years I’ve tried a ton of different creams, ointments, etc., and this stuff is definitely one of the best.
Soon I’m going to try the pharmacist mixed Eucerin-urea combination, but in the mean time I suggest you guys give this stuff a try (it can be found at walmart, meijer, etc. for about five dollars). [End]
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Hey there. I completely agree: it would be enormously helpful if the root cause of our problem was uncovered. The social problems related to this lip thing really suck, too :(
The dermatologists would probably be super helpful and are likely our best bet at understanding what’s happening, but sometimes I think that they don’t like to give advice due to potential legal issues (basically, there is no tangible reason for them to help and a big potential negative). One thing that seems to be especially insidious is the suggestion, which seems to be repeated all over the place, that our lip ...
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Hey everyone. I haven’t posted on here a while--nothing seemed to be working and constantly focusing on our lip problem was both frustrating and mentally draining. But to get to the point, some people have recently mentioned that urea might be helpful, and it reminded me about something that my dad had used in the past. He has (I think) a mild form of psoriasis on his elbows, and his doctor, who was an older guy who really seemed to know his profession well, ”prescribed” a mixture of Eucerin and urea. I put prescribed in quotes, because, at least in the US, there is no need for a prescript ...
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Ummm…guys, I don’t think he was suggesting that the Betagel should be applied either routinely or as a maintenance treatment; it sounded like the steroid would only have to be used for a short duration, during which time the lips would hopefully heal. I agree that topical steroid are, generally speaking, not something that should be applied with any regularity, but in this circumstance (and in any similar situation) I’d be willing to take my chances with short-term use (obviously, if the gel does indeed contain something that one would be allergic too, then the abovementioned statements do ...
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Hey 11years. Thanks for the ideas! The exfoliation issues seem plausible and should definitely be confirmed by others (I’d do it, but I’m in the middle of trying something else and I don’t think the two would be very compatible; I’ll be happy to try if the other thing doesn’t work)
Just to double check on a few questions:
1. Do you still have to use the exfoliation aid (lemon, etc.) on a daily basis in order to maintain normal lips?
2. If not, does the peeling start again and in the same way?
3. Have you tried looking at your lips in the rearview mirror and if so do they appear ...
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Hey everyone. I’m still doing the chitosan thing. I’ve refined my approach to the following: the hardened gel is only removed when/if a visible edge appears; I’ll usually only put in on once or twice a day now; and I no longer cover anything up before going to bed.
Basically, I’m not exactly sure what’s happening. At the very least, using the gel makes it much nicer to go out in the sunlight, because it makes the redness much less apparent. On the other end of the scale, I’m hoping that the redness is becoming less obvious because some of the underlying skin is actually healing. It’s to ...
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Hey everyone. This situation can be super frustrating and, because of the nature of this beast, it’s easy to think that something is working, only to have the peeling start anew.
We’ve got to be able to debate this stuff without making it personal and getting angry at people. There seem to be only a very few people who have this problem and fewer still is the number who have found their way to this board. Our chances of resolving the peeling increase exponentially with the number of people who can collaborate and share experiences, so the more the merrier. I guess what I’m trying to say ...
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I posted a picture of what’s happened after about 5 days. Notice the return of vertical lines! The whitening is a side effect of the vinegar and usually goes away after about 20 minutes.
I should note that, in order to prevent a buildup of the chitosan/vinegar gel, the mixture does have to be removed every now and then (and you have to be very careful with the underlying tissue; although, it is at least a little bit resilient). Interestingly, tonight, when I removed some of the stuff, the underlying skin had a...”squeaky” feeling, something which I haven’t noticed in a very long time.
...
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Hey. Lot’s of questions there, but I’ll do my best. Firstly, let me preface this by mentioning that I’m by no means very knowledgeable about this stuff and everything I say may be wrong. Ok, so I’m thinking that putting a shell over our lips wouldn’t necessarily prevent them from healing. All of the cellular materials that are needed to repair tissues are transported from lower layers. Imagine inflating a balloon a tiny bit and then placing a rubber band around it. The band would be like the shell and if the balloon was inflated a little more (healing) the shell would stretch to accommodat ...
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Hey everyone. Ok, so this is day 5 I think and I’m still really happy with the way things are working. The mixture seems to form a resilient bond over the lips, which I’m hoping will provide them a chance to heal. It’s a little difficult to say what’s actually going on…I think the peeling has stopped, but, because I have to remove the shell every morning before school, it’s hard to say (I think I’m removing only the shell, but not completely positive; although, the skin under the shell looks a lot more normal and water even beads up on the surface without immediately turning the area white ...
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Hey. Great find! Even if this product remains unavailable for a while, it provides an avenue for further investigation. It appears that the product you found works, not through some drug mode of action, but instead by forming a physical barrier (one that is made of epidermal lipids). Here’s an article talking about the drug:
”DENVER, May 23, 2005 (PRIMEZONE) -- OnSource Corporation (OTCBB:OSCE), d/b/a Ceragenix Pharmaceuticals (”Ceragenix” or the ”Company”), has withdrawn its pending Request for Designation from the United States Food and Drug Administration’s Office of Combination Prod ...
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Hey everyone. Well, I’m on day 2 of the chitosan thing, and it still seems to be working pretty well. No peeling (of the skin that is; the gel that forms can be peeled off somewhat) and the skin doesn’t seem to be thickening as much as it did before.
Interestingly, one of the primary ways that I use to test how various things are working is to look at my lips in the rearview mirror (car). Normally, the affected areas appear very red, probably because some of the normal layers of skin are not present. The peeling areas get progressively less red over time and, right as the skin becomes o ...
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Hey everyone. Last night I ran out and got some chitosan from Vitamin World (unknown level of deacetylation). I put one 1000 mg tablet into a glass container, along with one 20oz capful of white distilled vinegar (sorry, don’t have the proper measuring gear), and let the two sit for about 3 hours (so that the acetic acid could partially solubilize the chitosan). In order to speed up the process, I broke up the tablet manually and mixed it thoroughly.
I applied a paste of the mixture using a q-tip and, after letting it dry for a few minutes, then applied a little bit of Burt’s Bees lotio ...
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Hey everyone. I’ve noticed that a few people have reported smoking and/or taking Zyban (also marketed as Wellbutrin, an antidepressant). In addition to the synthetic drug, nicotine has been studied and has some interesting properties, some of which could relate to healing (counterintuitively, not all of the effects turned out to be negative).
I smoked for a few years (haven’t smoked at all in about 5 years) and also used Zyban for maybe a week (it made it so that I couldn’t sleep, so I stopped taking it)
Can everybody please post if they’ve ever smoked and if they’ve ever used Zyband ...
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Oh, almost forgot: you might want to have the beading stuff analyzed by a lab. It looks like the fluid is pretty thick/sticky, possibly meaning that it’s some type of lymphatic discharge. [End]
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Mayu…That saliva thing is crazy. My lips have, at times, looked like the pictures you’ve posted, but I don’t think that saliva beading thing is happening. A bubble forms, but it’s dry underneath (like an air pocket). Has the beading happened from the very start of the pealing? Maybe the saliva glands were damaged either as a result of the trauma that initiated the peeling or after the fact, through some additional trauma (like peeling, biting, biopsy’s, etc.). I really hate how this peeling condition seems to have so many damn variables and small differences :( [End]
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Here’s something else from Wiki:
”The amino group in chitosan has a pKa value of ~6.5, thus, chitosan is positively charged and soluble in acidic to neutral solution with a charge density dependent on pH and the %DA-value. In other words, chitosan is bioadhesive and readily binds to negatively charged surfaces such as mucosal membranes.”
Source: http://en.wikipedia.org/wiki/Chitosan
So, if it can readily bond to mucosal surfaces (maybe using vinegar-acetic acid 5%-to partially solubilize) and it could, in fact, contribute to reduced hyperkeratinization, due to the inhibition of f ...
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Hey everyone. Just for reference, I think the white spots are called “Forcyce Spots,” and they are a type of sebaceous gland. Here’s a small blurb from Wikipedia:
“The sebaceous glands are holocrine found in the skin of mammals. They secrete an oily substance called sebum (Latin, meaning fat or tallow) that is made of fat (lipids) and the debris of dead fat-producing cells. These glands exist in humans throughout the skin except in the palms of the hands and soles of the feet. Sebum acts to protect and waterproof hair and skin, and keep them from becoming dry, brittle, and cracked. It c ...
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Hey. Unfortunately, I’m not sure either. To be honest, it would be really helpful to find out why the bubble is forming in the first place—maybe that might give us a clue as to why the thing won’t heal.
As a third possibility (behind autoimmune issues and/or a foreign invasion of some sort) I’m starting to think that maybe we should be paying more attention to would healing issues. If, in fact, the bubble and crusts keep forming due in part to some mechanical activity related to the special movement and environment of the lip, then it might explain why no amount of creams/medications se ...
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Hey. Thanks for posting the info. I’ve currently only used white distilled vinegar (5% acidity), applied full strength with a Q-tip, but it sounds like apple cider vinegar might be worth trying. [End]
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Hey everyone. I posted a picture showing before images (from different times) on the left (and the little ones) and after images, taken after using vinegar for about a week, on the right. It’s a small improvement, but I really think that areas might be healing bit-by-tiny-bit. [End]
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Hey. Sometimes I’ll get raw areas extending into my mouth if I’ve recently peeled off a crust. Basically, it seems that if the lips are left alone, a hard welded on crust will form that eventually forms a border and resembles the pictures posted by alesiom11 and Radika. On the other hand, if I’ve used lots of balms/lotions, and especially petroleum based products, my lips will resemble Mayu’s pictures and the skin will slough off much earlier and without forming as bad of a welded crust-like appearance (you asked earlier how my lips could resemble the different pictures posted, even though ...
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Ahhhh....look I’m not trying to be an ass, but I’m about 6 hours away from having a BS in psychology (and another degree)...anything is possible, but based on everything we’ve learned over the years, I’d be absolutely amazed if this thing was purely psychological in nature—so amazed in fact, that I might actually bet an enormous gold bar if I had one. If it was as simple as having happy thoughts, why would it have persisted during the first few months, when I paid almost no attention to my lips and was plenty happy? I’ll bet you a second, even more enormous gold bar that the next time you ...
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Hey everyone (and in reply to Kiran’s question). I’m really hesitant to post messages suggesting that some new approach has been working….but….I’ve been experimenting with white distilled vinegar (5% acidity) and something very interesting has happened.
Basically, I’ll dunk a q-tip into the vinegar container and then roll it around on my lip. Depending on the state of peeling it’ll burn either a little or a lot for a few minutes and the affected areas might temporarily turn to a whitish color. After about 20 minutes I’ll put on a dab of Burt’s Bees lotion so that the area doesn’t dry ou ...
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Hey all. This is an incomplete meta-list that I’ve compiled. Showing this to the derm might be helpful and indicative of the seriousness/difficulty in dealing with whatever is happening with our lips. Also, I will give somebody a giant gold bar if they can prove to me that our condition is factitious; claiming that whatever is happening is due to psychological problems might actually cause me to go insane.. :(
Here is a webpage that may provide some useful info (basically, it’s a bunch of doctors talking about EC; you must type “exfoliative cheilitis” into the search field): http://lis ...
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Thanks for the link update (edited it, so it should work again).
I honestly don’t know what the microscopy will reveal, if anything at all. For starters, I want to look at some of the skin that has peeled away (including some of the skin that I occasionally remove to make the area resemble something normal, which might still be alive—hard to tell). It will definitely take some research to be able to interpret the images (might have to ask some friends who are in the medical field and you guys for help). At the very least, I should be able to take some pictures and then pass’em along to ...
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Hey Kiran. It’s kinda hard to explain...my lip is sorta nodular (I think), but I can only tell if I squeeze my lip a decent amount (they’re inside my lip). I so far have assumed that the nodes are normal lip structures, which might be enlarged, possible due to the increased demands of having to continually repair the surrounding areas, or possible due to some foreign infiltration (the mycobacterial thing).
I would go and test one of my friends to compare, but they might never talk to me again if I squeezed their lip ;)
I’m not sure about the cheilitis glandularis (or whatever) thing. ...
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Hey everyone. I stumbled across some interesting info that might be related to whatever’s going on with our lips. I don’t have much time right now (have to go to sleep soon), but I was reading about wound/skin healing after various forms of chemical/laser peels, and some of the info seemed really relevant (at the very least, it might be helpful to understand the phases of wound healing).
I’ve been messing around with applying topical vinegar (acetic acid 5%; at this point I don’t really care about trying random shit) and it’s definitely doing something—it’s too early to tell, but it mig ...
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Hey, no worries...I think that’s probably happened to all of us at some point. Sometimes it seems like a new approach is working, only to have the familiar peeling cycle start again.
I firmly believe that whatever is happening has a cause and can be resolved. In order to get to that point, however, we have to some how figure out what is causing the peeling (the underlying stimulus).
Without question, though, group brainstorming improves all of our chances. =) [End]
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Hi Sharon. Thanks for the ideas and suggestions; they might prove to be very useful. There seem to be several lip conditions that produce similar symptoms. Just to be thorough, could you please describe the symptoms you had (and did they look similar to the pictures posted in this forum). Thanks. =)
DM [End]
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Sorry to hear about the discoloration...mine are reddish where the peeling has been occurring and the rest looks pretty normal. Maybe the changes are related to the Bactroban (it might even be a good thing), but you should probably check with your doctor just to be safe.
How long have you had the peeling?
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Hi kiran24. I can remember biting my lips inconsistently for a big chunk of my younger years (I’m 24 now). However, the damage was confined to the areas that were bitten and never seemed to involve whole areas of either lip. Of course, that all changed at some point, when the peeling/crusting/water-macerating processing started.
One thing that we have to be cognizant of is that we very likely represent an extremely small subgroup of people who have bitten and/or suffered some form of traumatic injury to their lips. If what is happening to us happened to all people who at some point rece ...
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Hi kiran24. I can remember biting my lips inconsistently for a big chunk of my younger years (I’m 24 now). However, the damage was confined to the areas that were bitten and never seemed to involve whole areas of either lip. Of course, that all changed at some point, when the peeling/crusting/water-macerating processing started.
One thing that we have to be cognizant of is that we very likely represent an extremely small subgroup of people who have bitten and/or suffered some form of traumatic injury to their lips. If what is happening to us happened to all people who at some point rece ...
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It looks like the person with SN: cureforcurezone (on this message board) tried using Efudex. Apparently, it made the peeling worse and restarted peeling in areas that had previously stopped (however, I don’t think the dosage/routine was mentioned and, with some drugs, initial results are negative and positive results occur only after continuing the treatment for some length of time--as might be the case with protopic).
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Hi all. I’ve only got a second (back on Sunday), but according to the biopsy report there were, in addition to other things, micro abscesses and a negative PAS. Additionally, some have reported (including myself) that we have some form of granulomas, slightly nodular swelling in our lips. According to http://pathhsw5m54.ucsf.edu/case29/image292.html from UCSF, “cultures and special stains for acid fast organisms and fungi should be done on all tissue that shows granulomatosis and/or microabscesses.”
According to: http://www.med.nyu.edu/dermatology/sem_conf/051606-7.html from NYU, “A n ...
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Hi Genzowakabashi. I admit that the mycobacteria theory is a long shot, but here’s my thinking:
The two most common pathogenic mycobacteria are indeed m.tuberculosis and m.leprae. However, I was thinking that our condition might be related to one of the other 70+ environmental variants, collectively referred to as MOTT’s (mycobacteria other than tuberculosis), which have been increasingly linked to opportunistic infections. (including: M. simiae, szulgai, bovis, chelonae, ulcerans, avium complex, malmoense, kansasii, xenopi, scrofulaceum, haemophilum, abscessus, marinum, fortuitum, gord ...
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Hi Genzowakabashi. I admit that the mycobacteria theory is a long shot, but here’s my thinking:
The two most common pathogenic mycobacteria are indeed m.tuberculosis and m.leprae. However, I was thinking that our condition might be related to one of the other 70+ environmental variants, collectively referred to as MOTT’s (mycobacteria other than tuberculosis), which have been increasingly linked to opportunistic infections. (including: M. simiae, szulgai, bovis, chelonae, ulcerans, avium complex, malmoense, kansasii, xenopi, scrofulaceum, haemophilum, abscessus, marinum, fortuitum, gord ...
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Hello. Can you please ask your doctors if they tested for acid fast bacilli. These types of bacteria are hard to stain/isolate (because they have a unique cell wall) and might not be found if they weren’t looked for. This would be super, super helpful information. Thank you =) [End]
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Hey everybody. It seems that of the people who’ve had biopsy’s, some have had yeast infections and some haven’t (I would assume that labs would always test for this, but not absolutely positive). I’m not sure what this means, but please keep us updated with how the diflucan works. Also, it was reported that for the biopsy’s that didn’t mention a yeast infection, only a nondescript inflammation was noted (they were described in previous threads on this board. [End]
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Yea, I know what you mean. Have you guys noticed that our lips look a lot worse in the sunlight (like if you look at them in the rear view mirror)? :( [End]
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Guys, I don’t want to be the harbinger of bad news or negativity, but I’m almost positive that whatever is happening with our lips isn’t the result of a mental condition and cannot be cured through thought alone. When this first started, I honestly didn’t pay much attention to it for at least half a year (I wasn’t really in the habit of paying much attention to my lips, so it didn’t strike me that something bad was happening). If thoughts were the cause or the absence of thought the cure, then it is likely that my lips would have returned to normal. Sorry to be depressing and I hope we can ...
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Hi Alesiom11. I’ve been working on a list of various drugs/treatments tried by different people, in hopes of maybe finding correlations (which, due to the small number of cases, might not be statistically significant, but, at this point, I’m willing to fudge on the science a little bit). Here’s a short summary of a person who used Dermovate; it worked while being used, but the symptoms came back after cessation of application. Here’s a further summary, mostly taken from: http://drugtalk.com/metronidazole/drugthread.php/t-122721.html
History and Symptoms:
There was a case of a 41 year ...
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Out of curiosity, has anybody tried taking plain old Benadryl (diphenhydramine in the US, acrivastine or cetirizine in the UK)? If yes, did you notice any sort of change (even minor) and for how long did you take the antihistamine? Thanks =)
DM [End]
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Wow, this is an awesome find. If the drug works as indicated, it might well hold the answer, or at least a clue, to our problem. I think an autoimmune condition is one of the most likely causes of whatever is happening with our lips.
Please keep us updated with any info you discover, or any results if you decided to give this compound a try (it looks like you can get a bottle from Vitamin World for about ten dollars).
Thanks for the find =)
DM
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Lol….I know what you mean. I’ll do something and for some reason there appears to be a change, but then it goes back to the norm.
DM =)
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Hi all. I wanted to provide an update. I’m embarking on a trial-and-error approach, using both topical and internal products.
I just wanted to say, in regards to herbal and/or other substances, I try to remain critical and employ ideas that might have some, at least in a quasi-scientific way, form of validity. Traditional medicine is important and has saved many lives and improved the quality of life for many—however, this may not be the only effective approach. Sometimes, using plant materials is frowned upon and treated as nothing more than some sort of slightly elevated magic. While ...
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Hi all. Sorry for taking a little while to respond (a buddy of mine is leaving for Iraq, so I was out of town visiting him).
I’m not sure if any of this is correct, but I’ll try to reply to your questions:
1. I’m mostly concerned with my lower lip, as that’s the one that appears most obvious. In that regard, I’m not sure which lip started peeling first or if they started at the same time (honestly, if this problem was isolated to only my upper lip, I might not have really paid much attention to it).
2. The tongue thing is interesting. I’ve never paid attention to it, but I think t ...
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Hey everybody. For anybody that’s ever had a lip biopsy, do you know or could you please find out if the lab tested for acid-fast bacilli? Thanks.
DM [End]
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Ok, I’m starting to think that you have some prefrontal cortex/impulse control issues. Not only is what you’re saying unhelpful, but it’s also wrong on many levels. For example, the same people aren’t trying the same things; different people are trying the same things that other people have tried. Additionally, because what we have is likely caused and/or mediated by multiple factors, something that didn’t work in one case might work in another (as is apparently the case with clofazimine).
DM
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Lol...ummm...by definition, trying out “DIFFERENT” lotions and potions is not “doing the same thing” repeatedly ;)
On an unrelated topic, and so as not to waste as post, I’m working on a bunch of ideas related to the abovementioned mycobacterial/immunological ideas, which I’ll try to get posted soon. Stay positive.
DM
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Hi everyone. I’ve been lurking around these boards for a number of years now, suffering quietly with exfoliative cheilits (or whatever it is we have), all the while hoping that somebody would discover a solution to our perplexing problem. As is all too often the case, attempting to convey how socially disturbing our affliction is to those who don’t share the problem is difficult and demoralizing at best and often downright disparaging.
Doctors, and we can’t really blame them, often don’t know how to effectively treat this condition (does anybody?), and routinely and repetitively prescri ...
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Some Thoughts - Autoimmune
Question about Sunlight
Vitamin C and L-Lysine
Chitosan update
Question to Everyone
Update on the vinegar
Wound Healing
Hello,Immune System, and Mycobacteria