Undiagnosed condition on my lip.

Question

I am a 39 year old male who has been living with HIV/AIDS since 1984. I am very troubled because of a condition on my lips that I have had for approximately four years and it continues to be undiagnosed by my primary care physician who sent me to dermatologists, ENT specialists, plastic surgery specialists and oral specialists. The condition first appearred as white spots on my lips and then it progressed each year - with the areas getting larger -and more infested. The condition now looks like flat, large circular abrasions or areas of dark pigmentations on my lips. But inside my lips it still mostly appears as large white spots. The doctors have tested me for warts, HPV and it's negative for both, unknown pathogen. At this point, my primary care doctor, who I get along with very well, has stated that the condition is undiagnosable and that I should just learn to live with it. I cannot accept this. Do you have recommendations of what else the doctors should test for? And, are there other outside referrals/specialists who I should be seeing. Thank you in advance for your attention. Signed, suffering in silence.

Answer

I have had several patients who developed excessive glands in the lips (whitish bumps) for unclear reasons. Have you had a lip biopsy? I have seen use of potent localized corticosteroids on a trial basis help several patients with that condition. KH