Agreed...I've resigned myself to the strategy of g

Agreed...I've resigned myself to the strategy of going to specialists (I'm lucky that my insurance doesn't require referrals, although my GP would refer to me to anyone, but I can just skip that step) for any specific issue. The GP is for physicals and annual general bloods, at this point. The GP has even explicitly said I've taught her a lot about my genetic condition, not that she really wants to follow up with more research on her own, but she knows more because of me. And that's in reference to already-FDA-approved treatments/meds, not even anything like LL. I go to specialists for people who know more, or at least I have a reasonable expectation that they should.

As you describe, the US system is not optimal and only getting worse; I've just landed on this 'less-knocking-head-repeatedly-against-wall' way to deal with it.