Lol nah, you would have done the exact same, you'll be amazed at what you can learn if you're stuck in a hospital for weeks with a smartphone in your pocket. Cancer fortunately has spreadsheets of what is called the standard of care, and they have tons of info explaining everything in laymans terms. Then you can look up the studies that were done (often quoted in said literature), thankfully that info wasn't behind a paywall so we were able to look at the studies and get the actual info the doctors use. Then from there you can work up what questions to ask, and then what questions after that. As long as your shitty dr is doing what the standards recommend you're probably ok, simply because that's what the science has proven through clinical trials. All the literature is referenced so all you have to do is click on them to go deeper and deeper, and the next thing you know the drs will start asking who you're talking to, that's when you know you're pushing them to do better.
My mom was an icu nurse, i have several aunts that are also nurses (with friends that are drs), and my sister is an incredible er nurse that has been doing the traveling game for awhile now and has worked all over the country. Several members here also helped with their expertise and support (thanks again!) so needless to say i had plenty of help figuring out what the doctor couldn't. Also when i got barnes involved i had an actual dr who had helped develop the treatments, so that cut out the noise dramatically. Medicine is obviously a very complicated and personal thing, and the doctors are overworked in an assembly line of patients, so it's up to you to make sure stuffs right.
I had some great drs too, the ones that worked on my partial paralysis went over and above to figure out what would work with me, without them i would have been completely paralyzed on a breathing machine attempting chemo, aka dead. So there's good ones out there, and they network to help them solve stuff so you are often working with several drs but don't often know it. Just keep on them and make them do their job, be polite but ask pointed questions to get to what they aren't saying but are thinking. I got a lot of mileage over the simple "if it's not this, then what could it possibly be?" Or "this is what the standard of care is, why do we want to deviate from that?" By carefully wording stuff in certain ways you can push them to think about it differently, and will often get answers they don't want to give out yet because they're still working up to it. If you're thinking Lyme then make sure you say so, then if they won't test for it (without them explaining why it's not that) then go around them. Hang in there man, we're all in your corner.
My mom was an icu nurse, i have several aunts that are also nurses (with friends that are drs), and my sister is an incredible er nurse that has been doing the traveling game for awhile now and has worked all over the country. Several members here also helped with their expertise and support (thanks again!) so needless to say i had plenty of help figuring out what the doctor couldn't. Also when i got barnes involved i had an actual dr who had helped develop the treatments, so that cut out the noise dramatically. Medicine is obviously a very complicated and personal thing, and the doctors are overworked in an assembly line of patients, so it's up to you to make sure stuffs right.
I had some great drs too, the ones that worked on my partial paralysis went over and above to figure out what would work with me, without them i would have been completely paralyzed on a breathing machine attempting chemo, aka dead. So there's good ones out there, and they network to help them solve stuff so you are often working with several drs but don't often know it. Just keep on them and make them do their job, be polite but ask pointed questions to get to what they aren't saying but are thinking. I got a lot of mileage over the simple "if it's not this, then what could it possibly be?" Or "this is what the standard of care is, why do we want to deviate from that?" By carefully wording stuff in certain ways you can push them to think about it differently, and will often get answers they don't want to give out yet because they're still working up to it. If you're thinking Lyme then make sure you say so, then if they won't test for it (without them explaining why it's not that) then go around them. Hang in there man, we're all in your corner.
