It's so sad to think that you are probably right, but we should still unite and find a cure somehow. My life is practically ruined at the moment, having to deal with both chronic scalp folliculitis and Folliculitis Decalvans. I'm basically locked inside my house, even have to work from home till I find a sustainable maintenance plan to get it under control, or better yet.. find a cure!
Our best chance is to share our experiences and if someone does find a cure, he/she should share it.. not just abandon the rest. I will be giving Rot's success story a go once I get a hold on the stuff, but I find shaving to be a hard option for me as I can't imagine running a blade on my lesions. Feels sore just being there, let alone touching it!