A journey to the medical netherworld (2016)
hazlitt.net
hazlitt.net
Treatment is often an uphill battle, even to get well-understood drugs such as well-known antibiotics (such as cefprozil) and mast cell stabilizers (such as cromolyn). Many doctors refuse to try these, and many insurance companies refuse to cover them for off-book use.
In my opinion, the best solution is called "Test Of Treatment" (TOT). It means try a variety of things, and see what works. Test Of Treatment can happen after the usual treatments are tried and fail. Test Of Treatment can use generally-safe generally-reversible treatments, much like exploratory probes, to discover what's wrong and what can help.
I remember my classmates who went on to med school and became doctors. They were bright, but I don't remember their being extraordinarily so. Their classwork mostly seemed to involve a lot of memorization of facts, following rules and procedures, not so much thinking creatively or solving problems.
But now that they have MD after their names, we expect them to be familiar with a thousand different kinds of possible nuance? While operating in a system that only gives them 15 minutes per patient to hear what's going on and come up with a plan?
It almost seems unreasonable and unfair of us, but they expect that of us too. If we dare to question their assessment (again, after 15 minutes with the patient), we're "questioning their authority," even if we're advanced degree holders ourselves, and a stay-at-home parent who has spent nearly every waking moment with the patient or reading about research relevant to the patient's symptoms.
I know for every one medical research journalist like the author of the article, there are 10,000 exhausted working single parents armed with Doctor Google and a story about Kim from Accounting's niece's best friend's little brother who had a similar symptom one time, but it really seems like there should be a way to communicate when there really is something unusual going on.
Maybe it needs to be like customer support, where there isn't just one tier of doctor. Maybe there should be a system to filter actual complex cases up layers of specialty. But the customer support experience normally sucks, so maybe the model just doesn't work. I don't know.
There just has to be something that could make it better than this.
I would love to see Dr House, suffer his wit and actually get fucking help for once.
I'd love to see two more Pareto levels, at least. Like, an "advanced practice specialist" could cover the next 4% of things to pick up 16% more of the cases. And maybe one last tier that covers 0.8% of things that account for 3.2% of cases.
Granted, this still leaves 75.2% of the entire list of bizarre possible things that could go wrong hard to diagnose and treat, and that will be hard for the 0.8% of patients where something insanely weird is happening, but with a bit of humility about what it's even possible for our scientific knowledge to cover about "all the possible things that could ever go wrong," and in recognition that we'll essentially always just be doing the best we can to help people and we may not be able to help everyone, those seem like decent target numbers to me.
I mean, this is normally your GP referring you to a specialist, and 99% of the time that works. But when your specialist doesn't even know enough to know where to refer you next you end up in a weird space that is incredibly challenging to navigate. It would be good if there was an "expert diagnosticians" group that you could go to when even specialists are stumped. They could help navigate referrals to specialists, tests-of-treatment and enrollment in trials (which is a whole other minefield).
Fortunately all doctors we went to see, including the primary pediatrician, were well acquainted with it and with the blood tests necessary to confirm it.
And everyone was willing to throw a strep test in if we asked. It’s non-invasive and easy to administer.
Can’t imagine going through this with non-compliant doctors.
I guess the scientist in me still says that it should just be coincidence, people get better on their own and it happens to line up with a new drug they try. On the other hand if I had an illness like this I’d totally try it.
It does seem that medicine has a problem recognizing illnesses which are difficult to measure and don’t have any viable treatment options, the system isn’t really set up to diagnose things like that.
It's a really bizarre situation because you can have a known-pathogenic COL5A1 mutation, dislocate your shoulders at will, and have a disorder so old that the ancient Greeks wrote about it, and still get belittled and gaslit (at worst) or passed off to a physiatrist who can prescribe you fancy splints and crutches (at best.) Largely (imo) because your disease isn't a good fit for any specialty.
This problem originates from science being systematic (step by step), not systemic (whole system). Both systemic and systematic approaches are required to understand reality [1].
So in an ideal world, we would have a science which looks from both the inside out perspective and the outside in. Right now - if a test doesn't measure it - it may as well not exist. That's an "inside-out" perspective.
Once the science is fixed, the medical establishment is next: medicine has become too complex for any one doctor to understand. Doctors need to work as a team, each performing a different role.
[1] "Systems Engineering: A systemic and systematic methodology for solving complex problems." Joseph Kasser, 2019. p. 17
This echoes my experience with CBT. [1] It turns out you can't treat autism or a brain injury with CBT as-is - but they don't screen for that.
Recurring episodes of hot/red ears, especially after an initial trigger of infection, sounds a lot like relapsing polychondritis. But RP is already super rare so I have no idea what the potential intersection of RP and PANDAS looks like.