Luck based medicine: my resentful story of becoming a medical miracle
Luck based medicine: my resentful story of becoming a medical miracle
My own similar story like this:
I had a bunch of weird symptoms starting several months after I was really sick with what was maybe COVID, maybe some kind of SARS, and at least the worst flu of my life by 3 orders of magnitude. Symptoms kind of matched pericarditis, but there was no evidence of that. I wore a heart monitor for two weeks, turned up nothing either. I would occasionally get diabetes in the sense that diabetes is a symptom (excessive, unquenchable thirst), but blood glucose monitoring proved that I was, if anything, unusually healthy in that regard. I also experienced occasional vision blurriness, palpitations, and pain extending into my next and left arm. Probably some other minor things too that I've forgotten.
After almost a year of going to doctors and ruling things out my PCP recommended a dietitian, in part because I think he was out of ideas and dealing with a patient who had been reasonable for years but was now complaining about mystery symptoms that couldn't be explained.
After two very expensive hours the dietitian recommended I go on an elimination diet because it was "probably gluten". I rolled my eyes. I had eaten gluten just fine for years, no family histor...
The Mg hypothesis is easy to test: Get some MgCl or MgCO3 and take some with gluten containing food. Use a quantity similar to the Mg dose found in the amount of coconut water you found to help you. If it helps it is the a tive ingredient. If not, it may still be invloved but not sufficient.
I had eaten gluten just fine for years, no family history of gluten issues, DNA testing negative for celiac, etc.
Methods of growing and processing wheat have changed dramatically in the last few decades. Especially for pre-packaged sliced bread, buns for fast food, and anything else bought by a serious cost cutting purchaser.
i.e. The gluten found in any product you can buy for a few dollars in the U.S. or Canada is almost certainly different then the gluten any of your parents or grandparents had eaten.
This isn't really talked about outside of industry experts and enthusiasts, and maybe some very agitated celiac adjacent folks, because there is no feasible way to go back to the old way of wheat growing and processing without bread doubling or tripling in price.
There are probably niche growers for luxury markets, and of course 'gluten free' bread, if you really want to eat bread regardless.
That it involves many more steps than put a thing in the microwave and pressing buttons means it's a cooking task I'm only going to perform for special occasions, if ever. I realize others like cooking a lot more and would love an excuse to "have to" make their own bread, but not me.
Drug development and genomics already use luck-based approaches. I wonder if doctors just worry about not looking respectable. A psychiatrist I know always seems a little defensive when the problem of finding the right med for a patient comes up, as if he were afraid others might see it as a bit seedy that he just tries things until something works.
Geneticists will silence every single gene in C. elegans to see the effect on longevity, then construct mechanistic hypotheses based on the the genes that had an effect.
If you read descriptions of how a genome-wide association study (GWAS) works, the field's very clear that the method has trouble with:
- Traits heavily determined by a small number of rare but but powerful alleles
- Traits determined by a very large number of common but individually weak alleles
In animal studies, GWAS can be conplemented with QTL mapping to address these problems. Otherwise, you're stuck with doing massive, massive studies on genetically diverse populations to try and get a full picture of the genetic architecture of a given trait.
In nutrition, it would not surprise me at all if Boswelia occasionally has a powerful effect for a small number of patients, ...
At some point, I'd like to consider whether there's value in developing a protocol + software + device for facilitating personalized randomly controlled trials beyond whatever is the Pareto frontier for current enthusiasts
I know someone who's working on this and I love the idea, although thus far his app is absolutely useless for something that doesn't kick in and wear off the same day and I haven't verified it for that use case either. I also have an entrepreneur client whose very interested in this and would plausibly provide support to someone working on it, but it's not his own top priority.
I've had gastrointestinal issues all my life. They started when I was a newborn; doctors diagnosed me as 'withholding', which is a polite way of implying that somebody is causing their own indigestion by refusing to take a shit. My distraught parents consulted several doctors who reaffirmed the original 'diagnosis' and finally resorted to administering enemas after other approaches had failed.
Presumably driven to innovation, half-mad with pain, sometime during my toilet training I arrived at a hack solution on my own. Rather than sitting on the toilet, I adopted an improvised 'squatting' posture with my feet planted on the seat, which my mother affectionately christened 'The Spider-Man pose'. I had no way of knowing at the time, of course, that a good chunk of the modern world does their business in a similar-if-somewhat-less-elevated position.
The new posture was a winner in the sense that I could actually move stool. Unfortunately, it did fuck all for my chronic constipation and extreme pain. So my adolescence was full of grueling, agonizing bowel movements that persisted into my teens. For me, it was ordinary to go six or seven days without shitting and then spend a tortured 2-3 ...
Curated. I appreciate this post for what I see as pushing on a frontier of reasoning, epistemics, and practical life advice. On LessWrong, we love well-researched, epistemically virtuous analyses of topics, and this post, to me, says something like "in some domains we really have a very poor idea, and you might want to try something different". And it's not an abstract point, I expect that this will change my behavior in future medical scenarios. Kudos.
Fuck you every doctor who told me my digestive problems were in my head or my fault for being a bad patient and you couldn’t help me until I solved the problem that drove me to you. You were factually incorrect and you should feel terrible.
I sympathize so much with this and other sections of this post.
Here's a somewhat related story of my own.
Part 1
I developed sudden strong stomach cramps in 2017, and while I did get a relatively quick appointment for an endoscopy, it was still a few weeks of suffering. In the meantime I was told that my problem was likely work-related stress or something. And it ultimately turned out to have been work-related stress helicobacter pylori, a stomach bacterium for which there is a well-known treatment (taking two different antibiotics and a proton pump inhibitor) which worked quickly and completely.
Side note: Supposedly a significant chunk of the developing world has this bacterium. (Wikipedia: "In 2015, it was estimated that over 50% of the world's population had H. pylori in their upper gastrointestinal tracts[6] with this infection (or colonization) being more common in developing countries.") But if that's true, the vast majority of cases must be ...
I had a severe health problem that I treated myself with broscience (doing research like a gymbro buying supplements to get hyooge) and some alt medicine that needed a clinic. I have pre and post treatment test results showing a problem and the problem in remission, with a degree of success that was unheard of, even in that particular clinic for that particular issue.
Had this conversation:
"So Dr, you're saying that either I have done something medicine believes to be impossible, or I was never sick"
"That's correct"
I looked into commercialization of my protocol, but unfortunately, I used mostly stuff available OTC, which would no longer be available OTC if it were determined to be 'a drug' by success in a RCT, and I would thus lose access.
So the process of getting good data is explicitly counterproductive to my goal of staying healthy.
Can I encourage you to write it up on a patient forum somewhere? Or I'd host it on my blog if you want. If luck matters this much I think it's worth recording every success, even if they rarely replicate.
My own frustrating story: had weird skin issues diagnosed as a variety of things for years and unsuccessfully treated with a variety of prescription and OTC remedies. During the pandemic I built up some spare capacity to overcome my usual maintenance helplessness around it and decided to throw literally every internet intervention for every possible diagnosis at it at the same time and then do binary search for specific things that worked. What wound up working? Hydrogen fucking peroxide. Something that many people say has no chance of working. It's been 2 years now and my symptoms are 80+% better. My belated hypothesis is that the underlying cause is something to do with skin ph and just regularly using more acidic washes and lotions (eg salicylic or uric acid) also seems to help and make the peroxide less necessary. This seems to have fallen into the hole of 'because there's an adjacent woo thing (ph is often the domain of BS fake medicine) doctors were incapable of thinking anything near it'.
Wouldn't it be nice if there were a way to at least document random cures? Someone I know used to have problems doctors could not diagnose (lingua geographica was a symptom... one of those things nobody knows much about). Biopsies were made, blood levels were checked, a heroic efforts was put into trying to match the symptoms with something known. They disappeared all at once after a coloscopy, which requires, lo and behold, an intestinal cleansing that seriously disrupts the gut ecosystem. The moment the symptoms disappeared, doctors forgot about the issue. We learned that doctors are there to treat and have no time for research or curiosity. I feel an important bit of information is being left on the table, and it's not their fault, it's the system they are trapped in.
Loved this post. Both because I think this is a valuable set of reasoning heuristics, and because I read it in your voice, which made it feel something like a rationalist standup routine.
This reminds me of Scott Alexander's post on Pascalian Medicine: https://astralcodexten.substack.com/p/pascalian-medicine
The gist of that post is that if you take dozens-hundreds of medications for something, each of which is unlikely to work but carries basically no risk, the net effect of the medicines is in theory positive. I think this is probably false for acute illnesses, but might be true for chronic illnesses since the net damage of the illness is larger (barring consequences like death from acute illness) and the odds of a negative interaction between medications is lower when you're only taking a handful at a given time (again, so long as nothing kills you - I don't know how to account for that because I don't know how likely it is). As a result, while for each medication you take you might have negative expectations for that dose - a couple of random side effects with no effect on your condition - the information you gain means that the lifetime consequences of taking the dose are positive. I have no idea how to even guess at the frequency that a given medication will solve a given problem through pure luck, which is unfortunately the central number in this calculation.
I'm glad you found something that works for you!
Yeah, I would only make the case for this when a cure will be obvious. Medicine that insists its lack of effect is a sign you need more, ad-infinitum, is the worst- but I'd apply this to standard medicine too, and standard doctors take it worse than alt practitioners.
I also think Scott is mostly but not entirely right on the Algernon effect- that it's easier to hurt yourself than help. That is mostly true, but often chronic problems are caused by your normal homeostasis mechanisms getting caught in a bad equilibrium, and knocking yourself out of that equilibrium can be a step into an adaptive valley. But that can only possibly hold for things where there's a good equilibrium to be had, which I think is much more true for digestion and inflammation than for e.g. aging.
So much yes to this post. This tracks with about everything I've experienced so far. It also makes me appreciate even more the close friends I have in the medical profession; I know I can trust them to review ideas, think about them, theorize, and suggest other areas for research at a level that is appropriate for my skillset. In private, they admit to proposing numerous luck based treatments that panned out. Our hardware is complicated, and we have extremely limited monitoring and visibility on it. Doctors that aren't burned out and are curious know th...
A lot of gut issues are a combination of:
- Allergies to food. Diagnose and treat by cutting the most common offenders from your diet first: gluten, eggs, nuts, dairy. If there's no improvement and you're desperate, cut everything from your diet except rice and water, and add foods one-by-one until you isolate the culprit.
You may have an intolerance to food which isn't an allergy, e.g. coeliac disease. These can be diagnosed by a colonoscopy. - Allergies to other things in the environment that are causing issues, e.g. fragrances.
- SIBO (small intestinal bacterial
I mostly want to let 1000 flowers bloom on this, but activated charcoal is on my list of "only use if you have a very specific model of exactly what you are solving and what the costs are, with numbers". To the extent it works, it does not discriminate between toxins, nutrients, and medicines.
Normally that’s an idiom for “We’re not sure of the best approach here, so let everyone try whatever approach they like, and hopefully among a thousand methods, some will be useful”.
It sadly also was used by Mao, possibly to lull dissenters into a false sense of security, to then be cracked down upon:
During the campaign, differing views and solutions to national policy were encouraged based on the famous expression by Mao: "The policy of letting a hundred flowers bloom and a hundred schools of thought contend is designed to promote the flourishing of the arts and the progress of science."[3] The movement was in part a response to the demoralization of intellectuals, who felt estranged from the Communist Party.[4] After this brief period of liberalization, the crackdown continued through 1957 and 1959 as an Anti-Rightist campaign against those who were critical of the regime and its ideology. Citizens were rounded up in waves by the hundreds of thousands, publicly criticized, and condemned to prison camps for re-education through labor, or even execution.[5] The ideological crackdown re-imposed Maoist orthodoxy in public expression, and catalyzed the Anti-Rightist Movement.
The way I think about this is more "sometimes it makes sense to lower your standards for trying things". Ie here the upside is incredibly large: if trying the thing works, it means a significant improvement to quality of life. OTOH, the downside is relatively small: some non-crazy amount of money and/or weeks of unwanted side effects. With that as the upside/downside, I think an eg. 1% chance of something working is plenty.
Related: Pascalian Medicine
...When I reviewed Vitamin D, I said I was about 75% sure it didn’t work against COVID. When I reviewed ivermec
The broader problem here is more one of predictive validity, and only accidentally or as a special-case 'you should try more things' (the value of that is doing it in a human, not the more-things per se). Appropriately, a new Scannell paper just came out, further discussing the logic of pipelines/screening/selection.
Why did they discover so many amazing drugs back in the 1930s-1950s? Why do we discover so few now? Why is the late Shulgin so influential? Well, it's because they were 'testing' all of the drug candidates (where the n is extremely, extremely small by contemporary standards of various kinds of in vitro or in silico screening) in humans. (The secret ingredient to both Soylent Green, useful COVID vaccine trials, and good drugs? It's humans. Always has been.)
The key point being any humans, not necessarily yourself. When you feed random wacky chemicals to humans and one of them tells you it did something funny, this has low predictive validity, as it is bare anecdote afflicted by all sorts of biases... but it still has way more predictive power than poking some mutant cells in a petri dish, and that's why you can look impressive and brute force thousands of those petri dish...
If the problem with proteins appears, it would be worth experimenting with whether you can replace protein requirements with consuming amino acids directly. If you consume them directly, there's no need for the stomach to break down proteins and you still get the nutritional value.
Really apprecitate you sharing your story. I read through most of the comments and it seems most of them are centered around diet/illness and finding miracle cures almost by accident. Has anyone here had mysterious musculoskeletal issues (nerve issues, chronic pain, etc. - I know those examples are vauge...) that no doctor was able to diagnose regardless of imaging but were able to fix through self-experimentation and trial and error?
I think it might be good to normalize "just try stuff until they fix your condition" as one of the treatment strategies. I guess it's a bit ironic that Dr. Spray-n-pray's indifference toward which pill worked and why seems so epistemically careless, while actually maybe being a correct way to orient towards success when you optimize for luck and have little reliable information.
Wonder how much of this is due to variation in gut flora and finding something that your picky gut bacteria could be happy with. Certainly made a difference for me, accidentally, when I apparently picked up a different gut flora strain that changed things that have been persistent for decades.
This points to the biggest contradiction for evidence-based medicine: it's often at odds with personalized medicine. We like to say that the plural of anecdote is not statistics, but we squirm a bit when asked to contemplate that the opposite is also true.
Yet our best tools for understanding how the body works require n>>1 for us to learn anything meaningful. You can't do statistics on a single event, be it an actual literal miracle or just an unexpected one-off effective treatment. How often do we directly observe the limits of our epistemic system, and then complain that reality isn't adjusting to the tools we prefer to use for measuring it?
Overall I'm delighted with this post. It gave me a quick encapsulation of an idea I now refer to a lot, and I've received many reports of it inspiring other people to run helpful tests.
A number of my specifics were wrong; it now looks like potatoes were irrelevant or at least insufficient for weight loss, and I missed the miracle of watermelon. I think this strengthens rather than weakens the core philosophical point of the post, although of course I'd rather have been right all along.
This 'medical miracle' story engenders hope. To suffer a chronic illness and to have no tangible answers regarding (diagnosis for too many), treatment, or treatment that works, is disheartening, frustrating and draining. Here is a detailed account of one quest that, having exhausted the standard intellectual-medical approach, remarkably results in relief. This writer gets deeply into her specific experience, and the reminder that there is a case for exploring intuition, along with unlikely luck, is uplifting.
I'd like to thank you for sitting down and writing this. I've been thinking about this post post for a few days now and I can't say that I have anything worthwhile to add (yet at least), but I'd like you to know that on the other side of the screen this sparked a bigger curiosity of a doctor-in-training somewhere.
I have a somewhat similar story. I have been struggling with ADHD all my life, and only recently started using anti-ADHD medicines. Unfortunately, these gave me stomach issues and tremendous reflux, which was only tolerable if I took them in small doses...which in turn barely helped with my ADHD.
After testing pretty much every anti-ADHD drug with combination of every anti-reflux drug, I gave up, and tried my aunt's suggestion of Ashwaghandha. I was beyond skeptical, and only gave it a try to please a concerned relative. I was mentally prepared to anti-plac...
Someone PMed me reporting that this post led them to try Osteo Biflex (which contains Boswellia plus some other stuff) and it ~cured their lifelong knee pain.
Yes, this sounds completely right. One unusually good doctor I had told me, "In the right patient, any drug can have any effect." It took me another four years to solve that particular problem, ten years in total, and I'm still concerned that when I see my new PCP (previous one retired) he might try to change my meds that've been working for 5 years.
Most doctors are too cautious, for whatever (often justified) reasons, to just try things. Most really don't know how to respect what patients know about themselves or to interact with an actually-intelligent p...
This post is really important as a lot of other materials on LessWrong (notably AI to Zombies) really berate the idea that trying out things that haven't been tested via the Scientific Method.
This post explains that some (especially health) conditions may go completely outside the scope of testable-via-scientific-method, and at some point turning to chance is a good idea, reminding us that intuition may be often wrong but it can work wonders when used as a last resort.
This is something to remember when trying to solve problems that don't seem to have one perfect mathematical solution (yet).
I flippantly summarise my version of this as "Prevent dementia, drink Coca Cola." My own story is that I was B12 deficient because of (at the end of a chain of causation) low gut motility.
I'd drunk Coca Cola like other people drink water for my teenage years and the caffeine in it was plenty to keep my gut motility up enough to not cause issues. Eventually I went off Coca Cola for all the usual sane health reasons (but never picked up coffee or some other caffeinated drink!), my gut bacteria spilled over into my small intestine (SIBO) and increased irritab...
I had severe fibromyalgia/chronic fatigue syndrome for a couple of years, as diagnosed by two independent rheumatologists. It was so bad I couldn't sleep at night and I couldn't get out of bed during the day. Around that time, a few pilot studies came out of Spain with excellent results from CoQ10 supplementation. I had had little success with the regular prescriptions, so I decided to give CoQ10 a try. I felt much better after a week. Eventually I also started supplementing with other stuff known to be used by mitochondria, and 6 months later, I was back ...
My own weird medical story: apparently I inherited my father's issues with heartburn and acid reflux. We share an unusual heartburn trigger: sugary drinks. I can have just about any artificially sweetened beverage under the sun, regardless of how acidic it is, and be perfectly fine, and I have no problem with tomato products or many other acidic foods that give other people heartburn, but just about anything that contains both water and a lot of sugar makes my chest hurt something fierce.
I've only found two exceptions: orange juice is pretty safe for me, and Diet Minute Maid Lemonade is almost as bad as the non-diet stuff. (Minute Maid Lemonade gives me heartburn basically 100% of the time.)
Reading your experience with the medical world was hard for me. I have ARFID and have been down the same ringer for my entire life. I've come away from those experiences with a lot of the same conclusions about medical treatment and have also found myself into that try-a-new-doctor-every-couple-years loop. But in my case, I am now reasonably convinced it's psychosomatic. I'm happy you were able to find something that helped you!
Condition: Dry Eye Syndrome (AKA: your eyes are dry and we don't know why)
Treatments that doctors did not recommend that work well for me:
Moisture-trapping night mask: https://www.eyeeco.com/eyeseals-40-hydrating-sleep-mask-charcoal-black.html?cat-id=
Moisture-trapping glasses: https://www.zienaeyewear.com/products/kai
If the cause is unknown, might as well treat the symptoms.
There really should be an aggregator for medical knowledge found on disease forums and posts of this kind (is there one?)
Re/ ketone esters, is it plausible that they increase variance in productivity, but not mean productivity? That is, for some people (or for the same person at different times) they increase productivity and for some they decrease it, in a way that balances out in expectation?
I have so much fucking sympathy for this.
I suffer from a connected set of unusual and debilitating conditions that clearly, noone is capable of accurately diagnosing or making sense of. I understand aspects of them - inflammation makes them worse, for example, as do certain parts of my hormonal cycle, it also seems to be related to a genetic difference in how I respond to some nutrients and how my joints operate and a neurodivergence, and these aspects are reliable and helpful - but at the end of the day, noone knows why this is messing up my body so badly...
In response to: "I don’t understand why or how weight-loss-that-is-definitely-not-changes-in-water-retention comes in chunks. If you have an answer I’m quite curious."
I too have observed that this happens. I read somewhere that if you lose fat, it is a few cells losing all of the fat instead of many cells each losing a little bit of the fat. The empty fat cells fill with water and your weight stays approximately constant. After there are enough empty fat cells that have been empty long enough, some of them do apoptosis and you pee out the water and you lose weight then.
I don't remember where I read it.
The potato diet reminds me of a brilliant professor, John PJ Pinel, who had a pet theory he could never publish.
He believed that the most effective diet was to limit yourself to no more than seven ingredients. You can pick any seven. It might be potatoes, eggs, beef, carrots, lettuce, blueberries and tomatoes. Any seven, and maybe a Vitamin C supplement if you don't pick a citrus. You become so tired of each ingredient that you eat substantially less calories.
The interesting part was the theory that a limited diet allows...
In my case it turned out to be manufactured food and gluten. This post is very similar to Quantifed Self movement.
Also please remember that side effects and drug interactions are a thing. Anything with a real effect can hurt you. I gave a very caveated suggestion of BosPro to someone on Twitter and it caused something akin to niacin flush in them. This is the same brand that does nothing to me but makes me better at digestion and uninterested in sugar.
What if the problem or the negative consequence of some intervention is hard to detect? I know...
This was a very interesting account and I think more of medicine falls into this category that we'd like to admit.
I'm interested in companies like Radicle Science that are a "private FDA" that run clinical-grade trials of natural medicines, vitamins, diet, exercise, and OTC medications on a variety of indications.
One of the ideas I'm excited for once we get further with the aligned AI stuff (sub-AGI level, but needs more careful handling than current narrow AI) is chatbots that people enjoy talking to which can collect and analyze anonymized data from lots of people. Hopefully this could push forwards personalized medicine significantly. That, plus cheaper better genetic screens and body biome genetic screens.
Regarding "Fuck you every doctor who told me my digestive problems were in my head": psychosomatic illnesses are a real thing, and sometimes the solution to an apparently physical problem really is psychiatric. BUT if a non-psychiatrist physician believes this is what's going on, THEY SHOULD REFER THE PATIENT TO A PSYCHIATRIST, not dismiss them. Imagine someone coming to a primary care doc with unstable angina and the doc said, "Ah, it's in your chest, whaddaya gonna do" without referring to a cardiologist.
He guessed I had an allergic reaction and threw 5 different antihistamines
Not so much dumb luck after all! Allergic reactions often cause inflammation, and it's the inflammation that is uncomfortable. Sure, it's not very controlled (could have suggested one, then another, then another, until you got to Boswellia, preferably in order of prior belief for each more-specific hypothesis), and other things could cause inflammation, but it's not completely luck either. (Though this did not detract from my enjoyment of the post!)
Some quick Googling says,
...
weight-loss-that-is-definitely-not-changes-in-water-retention comes in chunks
Source for my answer: for the last 10 months, I have fasted regularly, with various fasts from 16 hours to 7 days, with & without vitamins, including water fasts, electrolyte fasts, and dry fasts. During this time, I have weighed myself multiple times per day. [I have lost >100 lbs doing this, but that's not important right now.]
How hydrated you are at any given time is a confounding variable whenever you weigh yourself. My body can hold plus or minus nearly a gallon o...
You know those health books with “miracle cure” in the subtitle? The ones that always start with a preface about a particular patient who was completely hopeless until they tried the supplement/meditation technique/healing crystal that the book is based on? These people always start broken and miserable, unable to work or enjoy life, perhaps even suicidal from the sheer hopelessness of getting their body to stop betraying them. They’ve spent decades trying everything and nothing has worked until their friend makes them see the book’s author, who prescribes the same thing they always prescribe, and the patient immediately stands up and starts dancing because their problem is entirely fixed (more conservative books will say it took two sessions). You know how those are completely unbelievable, because anything that worked that well would go mainstream, so basically the book is starting you off with a shit test to make sure you don’t challenge its bullshit later?
Well 5 months ago I became one of those miraculous stories, except worse, because my doctor didn’t even do it on purpose. This finalized some already fermenting changes in how I view medical interventions and research. Namely: sometimes knowledge doesn’t work and then you have to optimize for luck.
I assure you I’m at least as unhappy about this as you are.
Preface to the Preface
I’ve had nonspecific digestive issues since before I have memories. In pre-school my family joked that I would die as a caveman because there were so few things I would eat, and they were mostly grains. This caused a bunch of subclinical malnutrition issues that took a lot of time to manage and never got completely better. And while I couldn’t articulate this until it went away, food felt gross all the time
It’s hard to convey just how bad this was for me, because it feels like it undermines everything I did to work around it. I’ve always been functional but decidedly less healthy than my friends. I got sick more often and it hit me harder. I was slower to heal from injuries and scrapes and that limited my interest in the more athletic sort of hobbies. I couldn’t work the same hours, and working hours traded off really sharply against energetic hobbies. I had to spend a lot of time managing food where other people can just show up and eat, which was a constant source of social stress. My genetics say I was destined to have anxiety issues, but the low level malnutrition and justified feelings of food insecurity despite apparent abundance did not help anything.
Eventually in my late 20s. I saw a nutrition-focused psychiatrist who listened to my observations (I could only eat protein with soda), immediately formed a hypothesis (I produced insufficient stomach acid), asked questions to rule it out (which I no longer remember), suggested a test (take stomach acid pills and see if they gave me heartburn), and when it came back positive (no heartburn) suggested a course of action (keep taking stomach acid pills) that showed immediate benefits in practice (indigestion removed, but only when I took the pills). My protein and produce intake increased enormously, and I felt overall much better.
This is exactly how I want medicine to work. I gathered good data and took it to an expert who immediately formed a model, definitively tested it, and prescribed a course of action that made mechanistic sense. If you forget that it took almost 30 years and I took those exact same symptoms to other doctors beforehand, it’s a stunning success.
But it was not a total success. My protein intake maxed out at 50 grams/day, and that was if I made consuming protein a hobby and nothing went wrong. I was doing much better than I had been, but my nutrient tests showed I still had a lot of issues. Eventually the stomach acid pills stopped working, although that seems to be “my stomach started producing more acid and a different problem became the bottleneck” rather than the pills ceasing to contain acid. But the problem was not solved, and more of the existing treatment did not help.
Standard Preface
I worked with a number of doctors on fixing the remaining digestive, for ~another decade. I had a lot of conversations like the following:
Or sometimes…
These exchanges were incredibly draining for me, so I didn’t have them that often. Every year or two I’d get my hopes up for a new doctor, pay a shitton of money (these doctors are never covered by insurance) for several emotionally draining appointments, and then get told they couldn’t help me and this was a failure on my part.
After several years of that pattern I gave up and went back to my old PCP. She hadn’t solved the problem either, but she had solved other problems, had ideas to try for this one, and believed it was a physical rather than moral problem. Unfortunately she is very busy, and sometimes pawns me off on her assistant doctors, who are idiots. That second conversation was with one of those, although in the real conversation I was less witty, and was more like “*sob* no *sob* I told you *sob* I CAN’T”.
I refused to see that doctor again, but this left me little leverage when they assigned me a different sub-doctor to handle a post-covid rash back in April. You know how naturopaths complain about western medicine being mechanical and reactive and not taking the time to reach a systemic understanding? Well this guy, who we will call Dr. Spray-n-pray, was determined to fight for equality by taking the same approach with unregulated supplements. He guessed I had an allergic reaction and threw 5 different antihistamines of varying legitimacy at me, with no mention of testing the hypothesis, monitoring my progress, expected changes, duration of treatment…
And it worked.
Not on the rash; I eventually had to go to urgent care for that. But shortly after I started the pills, I found myself eating 50 grams of protein in a sitting and then going back for more the next meal. I also started chowing down on produce, and at some point realized I couldn’t remember the last time I’d had dessert. I had known I had some aversion issues with food but didn’t realize how gross I found it until the feeling went away and I could just eat without feeling contaminated. About here is when I started a food diary and found I was regularly hiting 100g of protein/day. When I crashed my scooter I ate 350 grams of protein over two days, suggesting I could do that any time I wanted but chose not to, suggesting my body was getting all the protein it felt it needed, all of the time.
I’m not sure I can convey what a big deal this is either. I would have paid several years’ salary for this cure without thinking. It is now possible for me to feel okay at an emotional level it wasn’t before. Plus, you know, I can actually get the nutrients I need to run my body and stuff. My injuries after that scooter accident healed noticeably faster than past injuries. The fact that I haven’t caught an illness since April’s covid isn’t conclusive, since it’s summer and I haven’t done anything high risk, but it is interesting.
[I do have covid antibody results from the December (8 months after my vaccine) and August (4 months after catching covid) and my levels have gone way up, but that’s more likely due to the more recent and stronger immune stimulus.]
But that evidence came later. Back in May the timing of the miracle suggested that one of Dr. Spray-n-pray’s pills was responsible. This was more or less confirmed when I weaned off the various pills and the subtle grossness around food started to return. I could also feel growing sugar cravings. So it was important to figure out what the miracle pill was and get back on it immediately.
[If any of you are thinking “well it could have been a coincidence”: no it fucking couldn’t. I did not carry this around for 35 years and try everything to fix it only to have it suddenly go into remission for no reason. I’ll believe covid fixed it before I believe that.]
I had always assumed the reason doctors turned on me was that it was easier than accepting that they couldn’t solve my problem. But this one had fixed my problem! Not on purpose or anything, but I was fully prepared to pretend it was. Now we just had to figure out what had worked and why, in case it suggested any additional actions. I made a spreadsheet tracking the changes as best I could – when my diet changed (using grocery order data), when I’d started and stopped which pills. Surely my data plus his doctor ego would help us get to the bottom of this.
At the time of my follow-up appointment I had a strong guess which supplement had helped based on timing, but it didn’t make any sense. The active ingredient was Boswelia (specifically BosPro brand (affiliate link). I’m afraid to try another in case it breaks the spell). Boswelia is sometimes described by alt medicine websites as helping digestive issues, but in the same way they describe every supplement as helping digestive issues. “Helps anxiety, allergies, autoimmune disorders, inflammation, and digestion” should just be a stamp. This isn’t even necessarily illegitimate – the body is complicated and lots of things are entangled, especially with inflammation.
But I’ve tried a lot of these supplements at one point or another and there was absolutely no reason to predict this one would be different, even if I had researched it ahead of time. Examine.com is pretty positive on Boswelia but doesn’t list digestion as an issue it solves. Everything is connected to everything else in the body and it was still pretty hard for me to make a causal chain between Boswelia’s alleged mechanisms and improvements in my digestion. So I was extremely excited for Dr. Spray-n-pray to explain why it had worked.
All this was on my mind when I finally got to ask Dr. Spray-n-pray why his treatment had worked. He mumbled something about inflammation and moved on. He had zero interest in my spreadsheet or a more mechanistic understanding of what had changed. I confirmed the miracle was from BosPro when I resumed taking it and the digestive improvements returned (including the creeping feeling of grossness going away). It’s now 5 months since I started taking it and it still works but I have no idea why.
This is not how I want medicine to work, at all. A medic who clearly was not trying for a systemic understanding recommended a lot of stuff and one of them happened to fix a problem as unrelated as could be that I’d spent a decade+ searching for without success? Even knowing definitively that it works we have no idea why, and what would help or hinder it? And there’s ~0 evidence this would help other people with the same condition?
This is bullshit. But bullshit is working where logic feared to tread.
Other Evidence
This experience isn’t what got me on the path of luck-based medicine though. I was already at that point when the supplements were prescribed, which is why I took them instead of doing 5 hours of research and ignoring Dr. Spray-n-pray’s suggestions as the ravings of an idiot. There were a lot of contributors to my shift, but a few stand out.
A few years ago I ran a series of epistemic spot checks on various self-help books, and found that how helpful they were had no correlation with how rigorous or true their theoretical backing was.
Then last year I ran that ketone ester study. I and a handful of people I know get insane gains from using ketone esters – better than Ritalin with none of the side effects – but when I ran an RCT (n=8-12 depending on how you count) no one reported any benefits.
Or take Slime Mold Time Mold’s all-potatoes-all-the-time diet study (which happened after I started on the magic pills, but is too good an example to pass up). I have an extremely long list of complaints about their hypothesis and follow up study:
That’s a lot of epistemic sins. OTOH, their potato diet results inspired me to try the minimal potato diet, which consists of eating some potatoes every day (I started with ~100g of baby potatoes), and I’ve lost 15 pounds in 3 months. That level of weight loss with zero sacrifices buys you a lot of epistemic forgiveness, especially when my miraculous dramatic dietary improvements did fuck all to the number on the scale.
[ People already writing their “potatoes can’t possibly be the cause it must be psychosomatic” comments in their head: I see you. Your hypothesis is perfectly reasonable; in your position it would be my first reaction too. But in this particular case you’re going to need to explain why potatoes caused that magic mental shift when giving up soda, a dramatic improvement in diet and removal of dessert entirely, complete emotional reorientation to food, a mild prescription stimulant, and varying levels of exercise did nothing, and ketone esters worked better than all of those but much worse than potatoes. Comments not attempting this will be deleted or mocked as I see fit.]
If you are thinking “ah, but clearly those all did contribute and the potatoes were just the last step”: I agree that’s likely. If I’d started minimal potato diet before BosPro it either wouldn’t have worked or would have been extremely bad for me. But since it seems to work for at least some other people who didn’t have all this baggage I think we need to update in that direction.]
Or take every person who got a second opinion on their cancer and was recommended diametrically opposing treatment plans. Doctors as a class are not as epistemically virtuous as I’d like, but that’s not (always) why they propose wildly divergent treatment plans. In most cases it’s because the answer isn’t obvious, or at best has only been obvious for a few years.
And then there’s the absolute shitshow that is nutrition research. No one knows what the average optimum nutrient level is and even if we did it wouldn’t be that helpful for figuring out the optimum level for a given individual, because humans are so unbelievably variable.
I could go on here, but if you’re reading my blog you’re probably already on board with shit being extremely complicated and I don’t want to belabor the point.
Moral of the story: when intellect fails, try luck guided by intuition
Some medicine is very deterministic. Antibiotics, most of the time. That daylong IV drip when I had norovirus that probably turned the infection from deadly to a kind of annoying 36 hours. We may not know the optimum level of a given nutrient but most severe deficiency diseases can be solved by giving you the thing you’re severely deficient in. My impression is statins work pretty reliably.
But a lot of medicine just seems to be kind of random. People go through 10 antidepressants and then somehow the 11th one works great. Ketone esters increase my energy level so much I gave up soda and caffeine entirely but do nothing for most people. All those books where the cure was a miracle for someone, and it can’t just be a placebo because there’s no reason for the 35th placebo to be the one that works but nothing else makes sense.
All of which leads me to conclude that once you have exhausted the reliable part of medicine without solving your problem, looking for a mechanistic understanding or even empirical validation of potential solutions is a waste of time. The best use of energy is to try shit until you get lucky.
Not at random or anything. My guess is the world contains metis and you do better-than-chance preferentially trying things that helped one guy on a message board for your condition (even though it was shown to make no difference in real studies) or going to alt-modality practitioners (even the one with proactively stupid justifications they insist on sharing). The latter is especially true if you can find a practitioner that accepts that their treatments don’t always work and have a system to notice that and change course, but I think maybe even the really gung-ho ones sometimes have good ideas (you just have to set up your own system for deciding when to quit). Just don’t get hung up on “do we understand why this works?” or “does this work for other people?”
Also please remember that side effects and drug interactions are a thing. Anything with a real effect can hurt you. I gave a very caveated suggestion of BosPro to someone on Twitter and it caused something akin to niacin flush in them. This is the same brand that does nothing to me but makes me better at digestion and uninterested in sugar.
So I guess the full and accurate statement of my beliefs is “Try solving problems with understanding first, but accept when you’ve hit diminishing returns and consider if your energy isn’t better spent increasing your surface area to luck”.
Parting shots
Fuck you every doctor who told me my digestive problems were in my head or my fault for being a bad patient and you couldn’t help me until I solved the problem that drove me to you. You were factually incorrect and you should feel terrible.
For potential clients in particular
People sometimes approach me for medical literature reviews aimed at their specific problem. There are forms of these I will do, but those forms do not include producing a mechanistic model and high-probability treatment for someone’s persistent, sub-clinical, amorphous problem that medicine has failed to solve. There are a few reasons accepting these commisions would be wasting the clients’ money, and one of them is that by the time they come to me they have found all the low hanging deterministic fruit. The best I can do is spend a ton of time generating lists of things that might work. Sometimes I do offer that, but people tend to prefer my other offer of a referral to a researcher that’s better at individualized treatment.