I understand your concern for keeping the group "inclusive." Having suffered this disease for about 10 years now, it is a bit exciting - and a bit embarrassing - to share the experience with others.
First, just to let you know who is writing, I am a 58 year-old white male that has the disease in the groin, upper thigh and buttock areas. There is no known similar disease anywhere in the family that is known to me. I am within 10 pounds of my correct weight for height and age and have never had a weight problem. Marital status is currently single (my wife left me two years ago as a result of my various restrictions associated with the disease - not liking to be around "sick" people). So much for the "in sickness and in health" bit.
Over the years, I have been treated primarily with antibiotics (the whole gamut changing frequently) with little or no success. In November 1995 and February 1996, I underwent surgery to 27 excise portions of my upper thighs and buttocks. Healing did not go well with about 20 inches of incisions taking the best part of a year to close and heal. These operations did nothing to slow down the spread of the disease.
In June 1996, I began a 20-week (80 milligram per day) treatment of Accutane which showed minor promise beginning about the 12th week with some of the more minor lesions healing (perhaps a 10-15% improvement?) and continued in that state until the course ended. My doctors - and I'm being treated at Johns Hopkins Hospital in Baltimore, Maryland - began a second round with the Accutane in June 1997 but at a much lower dosing of just 20 milligrams a day. To date, this has had no noticeable effect and the spread of the lesions is continuing. By the way, I suffered none of the side-effects associated with Accutane other than dry, chapped lips during the first course and nothing with this lighter than useless second course.
Pain is intense with every movement of my legs and while in the sitting position. After several months following the surgeries of controlling pain with narcotic pain relievers (Vicodin and Percocet), the doctors were unwilling to continue this treatment - more out of concern for themselves than with my pain, I might add. Through searching the Internet and talking with a chemist specializing in pain control substances, I stumbled upon Ultram. This is a wonderful non-narcotic pain reliever that is every bit as effective as Percocet but with a longer use ful period, in fact, up to six hours. By the way, just to prove most recent studies done on pain medications, I had no trouble withdrawing from the narcotic type medicines nor did I display any addiction.
My doctors have been pushing me to undergo the radical surgery required of serious hidrade-nitis sufferers. I have insisted they continue to explore alternative potential remedies. Lo and behold, they have come to the conclusion that there is a very good possibility that I might be helped by low-level radiation treatments. Apparently, there is a disease that mainly affects Afro-Americans with very similar type lesions on the scalp and, I'm sorry, I've forgotten the name of that disease. Recent experiments with this low-level radiation have proven to be extremely helpful. My doctor has consulted with the chief of radiology at the hospital performing these experiments and they seem to think it could be helpful to me. I'm certainly willing.
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