If you have not already, I would recommend going to Mayo in Rochester. This place is the most in-depth clinic rated #1 in the world! When shit goes sideways and you have no answers, I recommend getting on a plane to Rochester, MN. They WILL fix you or at least let you know what you have and how to mitigate it. Saved my life from Hodgkin's Lymphoma in 1995 and now just returned last week to be diagnosed with CSS. I am taking a few courses of action that are outside the box a bit, but the lethargy and sleeping are more than anyone can bare. Good luck and safe travels if you make the trek to the REAL MAYO CLINIC! God bless them all and big thanks to them!