> …Once the shock of the A-T diagnosis wore off, we started researching. Within days, we were convinced that Bertrand did not have it.
> …In Bertrand's case, the cause of long QT turned out to be erythromycin, which had been used to treat his infection in the hospital.
Yet many doctors will actively discourage patients from doing their own research. "Amateurs!" I found that a very familiar part in Matt's otherwise unique story. I've seen two similar stories unfold in my family.
Here in the Czech Republic (ex-communist Eastern Europe), many doctors (esp. older ones) still cultivate that "don't speak to us, mere mortal!" aura and I hate that. I'm sure doctors have their reasons, but as soon as you fall outside their "typical bucket" of symptoms and causes, best do you own due diligence and remain proactive.
I now view doctors more as steam rollers – very efficient, backed by some impressive technology. But once off the beaten path… they're not that far from where you stand, as a HN reader capable of complex abstract thought, reasoning and research synthesis. Too many people put doctors on a pedestal (scientists too BTW, I'm saying as one).
1: https://matt.might.net/articles/my-sons-killer/