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 prescribe ineffective and potentially harmful treatments (like corticosteroids, Antibiotics , etc.), which, after almost inevitably failing, only adds to the frustration and depression. A particularly irksome diagnosis, at least to me, is the determination that our condition is factitious—a nice way of saying self inflicted (I think that whatever we have might be initiated by some kind of traumatic injury, but then becomes self perpetuating). Please do not take these statements as anti-doctor; I’m only suggesting that the condition is not well understood and effective treatments are illusive.

Ok, so that was kind of a rambling intro. Here’s my background: I’m 24 and going to college in MI; I’ve had this condition for about 5 years now; before this condition started I used to bite my lips, often until they bled; the affected areas include a large part of my lower lip and the middle center of my upper; the skin becomes macerated, white, and soggy after being exposed to water (assuming that the skin has not recently been removed); in the morning, I have some of the whitish gel like material, which has been described previously, in my mouth; I’ve had a few cavities and have an Amalgam filling; my mom is very allergic to nickel, although I don’t appear to be (haven’t ever had allergy tests performed); the affected skin thickens and forms a crust if not removed; I’m currently on about a 2-3 day peeling cycle and try to never allow a tough crust develop; in addition to the peeling, I believe that at least my lower lip is somewhat swollen and everted; although I have nothing to compare this two, I believe that at least my lower lip feels nodular; I have a relatively small bone structure; I had mono in high school; I’m a Caucasian male; and I’m very frustrated with this situation :(!

Here’s a list of a few things that could potentially be related (some of which are overlapping): exfoliative cheilitis, cheilitis granulomatosa, Miescher’s cheilitis, monosymptomatic Melkersson-Rosenthal syndrome, crohn’s disease, sarcoidosis (serum angiotensin-converting tests can be performed to help exclude sarcoidosis), thyroid disorders, keratosis pilaris, psoriasis, eczema, seborrheic keratosis, sebaceous disorders, etc.

Personally, I think I’m going to get tested for several conditions, including: thyroid function, general hormonal analysis, and sarcoidosis.

I strongly believe that our condition is in some way related to our immune system (potentially an overactive immune response) or, and this is my real reason for writing, associated with a mycobacterial infection. Firstly, my dad has very mild Psoriasis (which is related to the immune system), as did his father, and I think I might have a little on my elbow. My dad has also reported that minor cuts sometimes appear to keep regenerating even after apparently healing.

On to the mycobacteria. Mycobacteria are interesting because they are notoriously difficult to culture and test for (some of the long growing variants can take literally years to grow in the lab) and, due to their characteristically thick, hydrophobic, and waxy cell walls are very resilient/difficult to treat. Additionally, one of the only successful treatments for exfoliative cheilitis that I’ve read about occurred when a patient was prescribed Lamprene (aka: clofazimine), which is an antimycobacterial agent. Mycobacteria can exist in water supplies, even after being treated with chlorine, and are resistant to many antibacterial/fungal, etc. drugs.

Also, Protopic (aka: tacrolimus) has been suggested to work in some, but not all, cases. This drug is a topical immunomodualtor, which could potentially interact with mycobacteria (which themselves interact with the immune system). This interaction is reminiscent of chicken-and-the-egg scenarios, but nonetheless should be kept in mind.

Anyways, a lot of antimycobacterial agents have scary side effects, are expensive, would be difficult to get prescribed, and might even be completely unrelated to our condition. With that in mind, I’m going to try taking sarsaparilla (not to be confused with sasparilla), which is a reasonably well document herb, cheap (available from Vitamin World for about six bucks), has no known toxicity in sane amounts, and is believed to have both antimycobacterial and immunomodulatory properties.

I promise to keep everyone informed about any progress, even if there is nothing positive to report, and I’ll eventually respond to any queries (I’ve been visiting for years now, so I’ll likely peruse the board for some time).

Sorry for the long post and hopefully these ideas might open up new avenues of research and/or treatment. It would be nice to get a dedicated webpage going, and to have people fill out a detailed survey (so we can compare any similarities). I strongly believe that the key to resolving this problem lies in understanding and correcting the root cause, as opposed to merely treating the symptoms.

Good luck to everyone

DM