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!
Questions:
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!