I'm so sorry. That's so disappointing, and I would be really sad too. Definitely, insurance is frustrating. I recently became a caregiver for my father after he had a severe stroke, and I'm learning a lot more than I thought I ever needed to know about Medicare and Medicare Advantage plans. I'm not sure if this is the case, but one thing I learned the hard way from managing my dad's care (and my own--I have chronic pain and HSD) is it's usually the insurance company that chooses not to include a provider in their network for cost savings, not the other way around. One of the reasons Medicare Advantage plans may seem less expensive is because they may have smaller networks.

Of course this isn't ideal, but since the waiting list is usually long, could it be an option to plan for next year when you're able to switch your insurance to find one that is in-network with Mayo?

My doctor and I also looked into Cleveland Clinic, but I haven't heard much feedback about it.

Where are you located? Before I even knew Mayo had an EDS Clinic, I did an in-person comprehensive consultation with a PT with expertise in EDS. I actually went to her for help with POTS, and she was the one who brought up my hypermobiilty. I've had more luck finding PTs than physicians, though that is extremely difficult too. Because she's a PT, she's not qualified to diagnose it, but she went through all the diagnostic criteria and was able to give me helpful recommendations within her scope of practice and suggestions for where I could learn more. She also does telehealth, but I'm not sure how she handles out of state telehealth (I am in Illinois). She works for herself though.

I'm hoping for you that something turns up.