Just an update for people who are facing the same problems...
As I stated, I did a treatment of Carac and then tried mixing it with DMSO (which initially worked). After awhile, I finally got a prescription for the Efudex and did it twice a day for 2 weeks and when it appeared to be working, we thought I could stop (PCP doctor, not a dermatologist - I haven't found a dermatologist I trust so far). The Efudex seemed to work for a while, but the problem returned and progressed more rapidly. I started mixing it with DMSO, but I came down with a totally different illness and had to stop. When I recovered, I just decided to use the plain Efudex again, but for a longer period.
As of today, I've been on the Efudex for over three weeks and the appearance of the treated area is much worse than when I did it for just two weeks. I have blisters on my lips (actual fluid filled blisters) and they extend into the inner mucosa of my lip...which then, the moisture from that area softens the skin of the blisters and they rupture frequently, causing significant peeling, profuse bleeding and a lot of drainage/weeping from the open areas. The pain is becoming more and more intense. I have reached the point where I can only drink through a straw and I have to eat very small bites of food, very carefully.
I stopped the treatment yesterday in HOPES that I've gone on long enough. Almost my entire bottom lip is a blister so I don't know what else I can do.
During the night, the drainage dries between my lips and anytime I open my mouth, it breaks everything open and the horrible cycle starts again...needless to say, the last few nights have been pretty restless.