When it comes to obscure and unlikely illnesses, many doctors have a hard time entertaining the idea. They're taught when they hear hooves to think horses, not zebras. From stories I've heard it seems like it takes trying until you find a doctor open minded enough, or perhaps there's a doctor/researcher that specializes in this area you can reach out to. Not all doctors are the same, to some it's just a job but I'm certain there are some out there that would be okay with exploring that
