I have been sick for almost 4 years with what I thought was sarcoidosis. Started with unexplained 35 pound weight loss and then skin lesions starting popping out-inside nostrils and below the back of neck at first but is now colonizing my entire body. I had no insurance the first 2 years and the doctors I saw and paid out of pocket mocked me, gave diagnosis that I KNEW couldn’t be true-i.e. shingles, sebaceous cysts, neurologic issue etc. It has also been in both eyes-left one the worst for about 3 years. I have lost a lot of vision in that eye. 2 opthomologists said I have enlarged optic nerves-with no explanation-just come back next year. I finally found a GP who did a punch biopsy of one of the lesions on my buttocks-suppurative dermatitis with fungal yeast, From day one, tiny salt or sugar like granules came from these lesions-and sometimes they are black or dark green. I even had some come from my eyes and nose that look like the decorative sparkly things! I am retired living entirely on SS but just at borderline income-$18,000 a year.
Can get NO help with anything medical and Medicare doesn’t cover everything. Plus, I got such POOR care from the 7 doctors I saw prior to my diagnosis that I have refused any further medical care. I used to have the pale skin that many red heads have-pale but clear and I always looked young for my age. Now at age 67 I look 20 years OLDER and the areas that it has colonized are turning a very dark reddish brown color-like a guy who did outdoor work all his life. The biopsy said there was extensive collagen degeneration also. I am in pain most of the time and experience the other symptoms-feelings of things itching and crawling,etc. I live in a 1952 house but in 1980 I rented a home that had such a bad mold problem it was literally growing up the walls! I have lost all of my friends and what relatives I ahd because of this illness-NO ONE believes me either”_quit whining they are just little pink pimples!” I am just living day to day and waiting for the suppurative ulcer inside my left nostril to go septic and take me out of here!
Any suggestions appreciated but this has permeated my entire body and I suspect I have had it a lot longer than 4 years-and didn’t realize it. At my age, and with no lymph nodes under my dominate arm due being unnecessarily BUTCHERED 20 years for a SMALL slow growing breast tumor and ALL NEGATIVE NODES, I see no way at this point that I could be SAVED!