Hi Virginiae. I too have been diagnosed with lichen planopilaris a few months ago. The dermatologist prescribed doxycycline but that caused blurring vision and I had to discontinue. She then suggested that I take plaquenil which is used as a treatment for malaria. I talked to several other doctors who say that this drug has a lot of side effects. I decided to put off taking it. The disease is causing hair loss with a red, painful and itchy scalp. It's also affecting the lymph nodes in my neck, which is very painful. Last year I took 4 rounds of antibiotics to cure a tooth infection and I was wondering if that may have weakened my body to the point where I got this disease. I saw a specialist in functional medicine who ordered a complete blood and dna stool panel. He said that it's possible with all the antibiotics and stress last year that I may have flipped a genetic switch that brought on this inflammatory disease. I'm waiting for the test results which include inflammatory markers in my blood and gut, toxins, bacteria, parasites, thyroid, iron, hormones, etc. Hopefully this will give us a path for treatment. I agree that this is very depressing....