Well, I've tried about everything so I'll do my best to try and list everything.
First of all, my lips in their current state are much improved but by no means healed or cured. My lips seem to be fine as long as they are moisturized or barriered by chapstick or vaseline. But this means that I have to constantly apply it. I cant just put chapstick on once or twice a day like regular chapped lips. I have to constantly apply chapstick. If my lips are not covered they look a bit inflamed and feel uncomfortable and dry. They will also start building up, but MUCH slower than before. In fact they just build up like a little layer of skin, not a crust like before. But I have also not kept them dry for long enough to see if they would crust up.
As for "treatments" that I've tried, they have been all over the place.
- Biopsy showing only hyperkeratosis
- Topical and oral steroids (prednisone)
- Swab cultures that showed staph, but my doctor didnt think that the staph was causing an actual infection he thought I just had staph bacteria in my mouth, which is quite common
- Antibiotics to try and get rid of the staph, which worked but no change to my lips
- Cyclosporine (oral)
- Regular old Aquaphor and Vaseline
Now, when my lips improved it happened very quickly. Meaning I just woke up one day and they were just better, it wasnt gradual at all. I'm not 100% sure what caused them to get better but this is what I was doing when they did get better:
- I was using two wound healing ointments "Bionect" and "Biafine".
-I was also using vaseline, and during this time I was doing what most on here call "moist healing". I was keeping my lips moisturized all day and not touching them. I would let them exfoliate naturally.
- And then the wildcard treatment that I actually think played a part was acupuncture. I was not a huge believer in alternative medicine, but my mom convinced me to see an acupuncturist and after seeing him for the second time, 2 days after, my lips were suddenly much better.
I dont know if it was coincidence, and that my lips were just healing because of my "moist healing" treatment, or that the acupuncture actually made a difference.
After seeing the improvement, I obviously kept going to the acupuncturist for a little while, but they never kept improving. They stayed the same.
This was about 2 years ago and my lips have been in the same state ever since. They are better but not healed. And I would still do anything to fully heal.
Anyways, I know this is a long post but I figured I should probably put something like this together for future readers.