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, gordonae, smegmatis, etc….). I admit that cases involving these organisms are, as presently understood, relatively rare; then again, our condition is equally rare.
Normally these atypical MOTT’s do not have the ability to pass through the mucosa, but it’s interesting to note that almost every reported case of EC, or whatever it is we have, has been precipitated by some form of trauma to the lips (biting, accidental cutting, etc.), which could serve as a vector to an infectious agent.
It’s also interesting that one of the only people (a long time ago) on this message board who seems to have been successfully treated was prescribed clofazimine (mechanism of action is unknown, but it’s believed to preferentially bind to mycobacterial DNA), a drug that is only labeled as effective for treating bacterial and mycobacterial infections (most commonly leprosy).
It’s very possible that mycobacteria are in no way related to what’s happening, but it’s important to definitively rule out such a finding before writing it off.
I just noticed this: the biopsy report posted by Alesiom11 noted that the lab found polymorphonuclear (neutrophile) leucocytes. Polymorphonuclear leucocytes are “a type of white blood cell with a nucleus that is so deeply lobated or divided that the cell looks to have multiple nuclei.” The usual findings associated with mycocaterial infection include dermal inflammatory infiltrates made up of lymphocytes, neutrophils, and multinucleated giant cells. It sounsds like multinucleated giant cells could easily be mistaken for polymorphonuclear leucocytes.
Good communication, let’s keep it going.