Hello @robcas, welcome to Mayo Connect. Thank you for being your girlfriend's advocate and sharing her story. I see that you also posted the information in the Infectious Disease Group. It is a lot of information to digest so I am hoping someone will be able to share some helpful information with you soon. It sounds like your girlfriend has a very difficult to diagnose health problem.

I'm tagging other Connect members that may be able to provide you with more information. @JustinMcClanahan, @kdubois, @kanaazpereira, @lisalucier, @colleenyoung are you able to offer any suggestions for @robcas

If it is a possibility to make an appointment at Mayo Clinic, they are extremely good a diagnosing hard to diagnose health issues. If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

The following TED talk by TED Fellow Jennifer Brea may be helpful:
"What happens when you have a disease doctors can't diagnose" - TED talk by Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.
https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

Hoping you find some answers soon.

John