This is very sad - people don't understand how much this affects people. I would have thought my son was overreacting if I didnt come to this site and hear about what other people are going through.
Interestingly enough, I think my son got this from Minocycline - he is not convinced. He recently went to another derm who recommended Minoocycline!
For inflammation - Minocycline is actually an antibiotic! I was really concerned - Minocycline also has been known to cause lupus, blindness, etc. I didnt want him to take it, but he is going to because he said if his lips get worse at least he knows what causes it - and then maybe can figure out how to cure it.
I am very concerned but he is 21 and and has had this for 5 years - at this point he doesnt know if he can continue with his Engineering program because he has to take classes together. As worried as I am, maybe it will help him figure out the cause.