I hope I have provided a comprehensive account of the diagnosis, treatment and hygiene measures relating to my particular version of EC. I’ll be signing off for the foreseeable or at least until after my next scheduled meeting with the oral pathologist on Dec 5. That said, I’ll be sure to post a report if everything goes ”tits up” between now and then. Otherwise, you can safely assume I am and continue to be in remission. I wish you all the best of luck with all your conditions. I’m off to clean more clothes (again) and linen (again) at very high temperatures and wash myself with s ...
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No problem, hope it is useful. I believe I am at either the 18th or 19th week of this approach. That’s a lot of pillow cases, washed clothes/ bed linen, and extreme personal hygiene measures under the bridge. I’ll try to keep the reporting as evidenced-based and objective as I can.   [End]
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I am happy to pass on the names of the oral pathologists handling my case from Barts and Kings but I feel it’s only fair that I seek their permission to do so first. I will ask them when I am back at Barts (Dec 5). Re. your other questions: 1. Started Bactroban towards the end of May. 2. No the condition of the lips was not the same as when the pics were taken in 2009. The oozing from the lips had subsided but the crusting continued in similar albeit in a different style. I’ll see if I can dig out some pics from earlier this spring to give you a better idea. 3. The lips no lon ...
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The Bactroban for 10 days during May overlapping into June. The infuriating bacteria irradiation regime, I think I’m at my 18th or 19th week.   [End]
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No ointments, that’s how they appear all the time these days. As previously mentioned I can only assume it’s a residual affect of the mouthwash as I haven’t applied anything since the Bactroban earlier this year. Hope that helps.   [End]
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At this stage I try not to let them get wet at all during the day apart from the Corsodyl Daily (once in the morning, once in the evening). The wet appearance (in my opinion similar to an icing glaze) can only be due to the residual effects of the Corsodyl as I don’t and haven’t been using any ointments/oils/potions since the Bactroban back at the end of May/beginning of June. As for your second point, the strain of bacteria was originally identified as Lichen Planus as mentioned in the detailed history. It was only subsequently identified earlier this year as staph. Aureus. Hope th ...
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I’ve uploaded the pics to the original SEB PICS file in the image gallery. So ignoring the fact that I was blessed with Mick Jagger’s lips since birth (i.e. they were always plumptious), I’ve tried to get in as close as possible so you can hopefully see how the lip cells are knitting together, how the swelling has subsided compared to before and how much of a healthy pink colour they are. They have been like this for 6 weeks now. Long may it continue. To say I’m thrilled is an understatement. Hope they give you a better idea of the progress that has been made in the past few months.   [End]
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Protopic! Great, I have been trying for ages to remember the name of that drug as the oral pathologist in the UK has been asking which treatments I received in the US. Thanks for that. Just for your information and probably of no help whatsoever in your quest for some semblance of lip normality, my patch test indicated strong reactions to the following industrial standard fragrances and parabens: Fragrances - (found in cosmetics, medicines, cleaning agents, washing powders/softeners, deoderants) - Mix 2 (E2860), Hydroxymethylpentylcyclohexenecarboxaldehyde (E2824), Citronellol, Citral, ...
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Sorry for any confusion. To clarify, I was asked to administer Batroban to the areas mentioned for a 10 day period. In the month afterward, I did nothing apart from very gently remove the crusting using the moisture/movement from my tongue and strictly follow the cleaning regiment. As you mention, I use Corsodyl Daily twice a day and let the liquid dribble onto the surfaces of the upper and lower lips and gently smack them together...nothing more. 6 weeks into the regime, the crust build-up diminished significantly and the lip cells/surfaces tend to knit together nicely overnight. ...
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Thanks for the kind words and don’t worry about the negativity. I guess we’re all quite used to the highs and lows of these types of condition. However, I should point out that I also used Batroban/Mupyrocin back in the States and it had little effect other than to exacerbate the oozing and general ”messyness” of the condition. I suspect it’s usage during this regime was purely secondary, to give the healing process a jump start before the battle of bacteria elimination began. Although it is still early days, I presume it will be a culmination of the combination punch of these to elements ...
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Happy to help. Just to clarify, the consensus at this point is that the staph. infection is the cause of the condition. The fact the patch test reveals I react to products containing linalool and and whole range of benzoates etc found in everyday consumer products can only help my immune system focus on fighting the EC if I eliminate them. Hope that helps.   [End]
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History/Context: I have suffered from EC for nearly 15 years and have been under the care of numerous doctors and dermatologists both here in the UK and back in the USA where I worked for a number of years.(7 oral pathologists in all) They have employed a range of treatments (topical steroids, steroid injections, antibacterial ointments etc) with varying results. I have tried alternative remedies as well: leaving everything alone; cutting; soaking; Chinese medicine; many many many many many different things and although the duration of the growth cycle and its appearance have cha ...
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I very much understand and totally empathise with everyone’s need for instant remedies (not that these exist) but please be patient. I promise to post all the data and some pics as soon as I can. And please also bear in mind that the treatment/management regime I will outline is aimed at my type of bacterial infection. I’ll make every effort to upload before Sunday 30 as I have work commitments over the next 48 hours. You can rest assured that I won’t forget.   [End]
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Diagnosis is cheilitis with staphylococcal superinfection.   [End]
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Finally, after some 15 years of suffering, it looks as though several wonderful oral pathologists from Barts, Kings and Guys believe they have identified the/a cause of my form of exfoliative cheilitis. The condition has since been almost totally eradicated. (see Seb pics in image gallery). Would anyone be interested in me posting a detailed account of the last few months of treatment and the various regimens prescibed by the medical profession?   [End]
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Finally......it looks as though there’s as excellent chance that the cause of my form of exfoliative cheilitis has been discovered. I intend to document the last 12 months of treatment and regimens prescibed by the medical profession and post it here as soon as possible.   [End]
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Many thanks for the information. Currently being treated by my fourth oral pathologist. Cheilitis Glandularis was one of several diagnoses eliminated over the years (post biopsy) although, now that you mention it, an oncologist friend of mine believes also that it’s a gland/capillary problem/blockage. He suggested the drug Thalidomide for its well-documented ability to regenerate/restore issues of this nature. I’m afraid a vermillionectomy frightens me more than the condition itself, but maybe this viewpoint is unwarranted. Thabks again. Seb.   [End]
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With the ”keratin beak”, my wife seeks out alternative places to kiss me. Normally (i.e. after peeling and clean up) we are able to kiss much like anyone else, albeit a little more gently. (Full admiration for your philosophy/outlook on life Rala) Seb   [End]
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No worries. I have been using the clean up with water and chapstick method since I moved back to London from the States in 2005 and basically seeing no light at the end of the tunnel or relief from pain. This last 6 weeks has been an experiment to see what would happen if left alone after all this time. Although I don’t like what I see and people continue to be cruel in the face of such a condition, I need to know how things are progressing and if any changes are occuring. For intance, two nights ago my lips fused over night with the bottom lip eventually dragging off most of the crusting ...
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Hi and thanks. Just to let you know I went down the steam inhaler route about 9 years ago and it softened the skin beautifully. Unfortunately it also created the sort of environment in which germs/infection likes to spread the love. I only tried it for 4 months though. Cheers Seb   [End]
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Hi, Hang on slow down a minute, I was under the impression this forum was about evidence, support and possible courses of treatment to alleviate the symptoms that accompany EC. As indicated in the threads posted earlier, you may have picked up on a couple of details: 1. I’m a 44 year old male 2. I am happily married with children 3. I’ve had this condition in varying forms since 1994 (29 yrs old) 4. If I smile right now, yes some of the keratin will fall off but even after soaking, both lips will bleed and infection will set in. 5. Lip balms didn’t work back in 1994 and they don’ ...
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Hi and thanks for coming back to me, You are correct in assuming 6 weeks. I stopped cleaning up at the beginning of August. However, due to the waterfalling nature of the growth (mirrored on the top lip), one layer after another forms so I have to cut away the top layer as another forms beneath it. If left alone my guess is it would eventually morph into a beak. I recently splashed out on a decent pair of surgical scissors and tweezers to cut away the keratin but I don’t carry them with me. The green liquid sits under the keratin. If I depress the keratin you can see the liquid disperse ...
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Hey, I’ve uploaded the most recent pics. (Over last 7 days). Just over half way through the cycle. (See file called seb) Seb   [End]
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I’m trying to upload some photos to the site but keep getting the following error...any ideas? Seb Microsoft VBScript compilation error ’800a03ee’ Expected ’)’ /ig/freeaspupload.asp, line 1017 nameOfFile = SubstNoReg(nameOfFile, ”Û, ”U”)   [End]
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Hi, yes approximately 14 or 15 years. The condition of the lips themselves under the crust has remained pretty much the same over the years, no worse no better. i.e. red and a little inflamed. The thing that has changed is the intensity of the formation (hyperkeratinization apparently). It started out much thinner than after 15 years. I will post pics shortly, just waiting for a memory stick to arrive. Seb.   [End]
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Thanks for the welcome. Actually it was your comprehensive blog that first persuaded me to get involved so thanks for that. Cheers, Seb.   [End]
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Hey, It’s reassuring to know that things can improve given time. Dealing with EC as a teenager must have been difficult. As for life management, that’s a difficult one to articulate. My experience is very subjective and differs wildly from my wife’s perspective. We decided to return home to London just before 2005 having lived in NYC since ’97. I couldn’t handle the stress of the commute to downtown Manhattan. The job itself was fine but the reaction from joe public (staring, pointing, laughing) was humiliating so I resigned from my well-paid job and we decided to return to the UK. I went ...
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Discharge is clear and sticky (similar to superglue as it comes out of the tube). It then transforms into a thin white line across the wet-dry line of both lips. Standard operating procedure (should I wish to go to work and live a normal life) is to gently remove this build up using warm water and cotton buds. However, this will only give me around 1 to 2 hours respite before having to repeat the clean up. Unfortunately this process leaves the lips feeling incredibly sore and prone to cracking. Smiling, for instance, is out of the question. Eating and drinking exacerbate the problem and re ...
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Haven’t ventured further than the garden. I have to say I’m quite concerned about where you source your cornflakes if they are various shades of green, brown and black and oozing pungent liquid. Maybe you should switch to omelettes or something?   [End]
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Hi everyone, I’m new to this blogging lark so forgive me for breaching any blogging protocols that may be in place. Quick bio: I’m a 44 year old male whose EC symptoms first appeared back in 1995. Fairly innocuous starting point; skiing trip leading to dry lips; excessive licking of the lips, repeated cosmetic clean up sessions to alleviate embarrassment in front of others blah blah blah. All of which has culminated in what we currently appear to recognise as EC. Several specialists, oral pathologists, alternative medicine practitioners down the line (both in the UK and the USA), I am pret ...
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