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 history of gluten issues, DNA testing negative for celiac, etc.

Well one week into the elimination diet my problems cleared up. After 3 weeks I ate a loaf of bread. I was okay. I ate another loaf of bread the next day. Symptoms returned.

What's even more annoying is trying to understand the mechanism of action. Nothing authoritative I've found has a good model. The best I've put together from scrounging forums and combining with the evidence I have is this:

At least in my case, gluten sensitivity is being caused by an allergic reaction in the villi of the small intestine. Gluten, or something that comes with gluten, locks into them and makes them swell. This causes referred pain that in my case mimics pericarditis symptoms. Because they're swollen they can't take up other nutrients, and if enough enough of them are swollen they can't even process enough water for my body to be convinced it's hydrated (in all cases of excessive thirst I was clinically fine other than some slightly lowered electrolytes from drinking so much water).

Now the weirdest part: drinking coconut water will make the symptoms go away, and I can basically eat gluten if I drink coconut water at the same time. My best guess is that the high levels of magnesium in coconut water are doing something here, but that's really just a guess. On the model, somehow the coconut water probably gets any gluten bound to the villi and causing inflammation to release and out of my small intestine and maybe also does something to help the inflammation to go down.

I can't find any papers documenting this sort of mechanism, though I'll admit I might just not know enough to be able to find them, and maybe the mechanism I've proposed is all wrong and it's better to just think of by body as something like a black box that has something like an threshold response to gluten where under some threshold I'm fine but then past some threshold I've "taken too much damage" to function normally and that I can get back under the threshold by drinking coconut water.

I just mostly avoid gluten now, but it was pretty frustrating that the only way to figure this out was to try something that we didn't have any good evidence a priori to think was the cause, other than some vague stats that gluten sensitivity tends to develop in middle age. I'm not sure if we could have done better but man I sure wish we could.

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:

1. Traits heavily determined by a small number of rare but but powerful alleles
2. 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, but that studies of it in humans are underpowered. Boswelia is an herb containing multiple potential active ingredients, and I fully expect that different production processes and batch-to-batch variability would tend to confound studies, not to mention selection of different conditions, measured in different ways, among different patient populations -- if the studies are done at all.

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. For example, do devices exist to facilitate self-blinded pill administration? Is there a way to help users collect and analyze the data without needing to be a statistics expert? Is it possible to make a logical list of things to try that's better than an alphabetized list of herbs, medications, and other supplements?

It's unlikely that I'll have time to do this in the next year, but I do think about it from time to time.

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 hours in the bathroom, passing a frankly terrifying amount of stool in a single sitting and then recuperating for several hours afterwards. This sounds like a gross exaggeration: Let me assure you it is nothing of the sort.

Things proceeded without much fanfare in this fashion for years. I saw several doctors during high school and they amended the consensus diagnosis from Withholding to 'Irritable Bowel Syndrome', the less-glamorous-but-equally-nebulous baby sibling of IBD (Irritable Bowel Disease). I was prescribed laxatives, antibiotics and steroids in approximately equal portions on the whim of the prescribing physician. I was directed to the food pyramid and instructed to adjust my intake towards more fiber and grains.

None of this helped and my condition worsened. It wasn't until after I had graduated high school that things became truly intolerable. By this time I had developed a bad case of hemorrhoids, was occasionally shitting blood, and suffering from chronic abdominal pain and persistent fatigue. My parents trucked me around to several specialists (gastroenterologists), each of whom reaffirmed that I had IBS. I had two colonoscopies, both of which were inconclusive because my body wouldn't properly flush even when I was following the cleansing instructions zealously (I imagine they weren't written with people who only shit bi-weekly in mind).

It was about this time I started to get seriously desperate. All my life I'd been pretty athletic, but I was running out of energy to do anything and that worried me. I broke out the laptop and started digging, trying to keep my wits about me but willing to try more-or-less anything for which I could imagine a plausible mechanism. At this point I had moved out of my parents house and was poorer than most readers here will be able to properly envision, so I didn't have access to a doctor. The only lever I had was my lifestyle, so I adjusted my diet and tried several supplements (the promising few I could afford). After running the gamut, I hit a bit of good luck.

On a hunch, after reading Gary Taubes' Good Calories Bad Calories, I started pulling grains out of my diet: The effects were immediate and powerful. My energy levels returned to nearly normal and, for the first time in my twenty-something years of life, my bowel movements got a little easier. I remember running downstairs, tears streaming down my face, to tell my roommate that I had figured it out: I was allergic to gluten.

My initial conclusion was, of course, embarrassingly wrong. Removing wheat had been a good first step, but it wasn't a cure. My symptoms had been consistent (and consistently worsening) my entire life, but now they came and went, seemingly at the whims of a capricious god, with no rhyme or reason whatsoever. Anybody reading this who knows anything about the reward systems of the brain is going to understand immediately how this engendered in me a sudden, insatiable interest in anything nutrition or gut-health related.

The rabbit hole deepens...

Over the course of much experimentation and several years worth of research I had developed a tenuous control over my condition. The flare-ups and remissions were at least explicable if not fully predictable, and I had become convinced that I was suffering from Ulcerative Colitis (a form of IBD which is really a fancy way of saying Colon Bad: Causes Unclear). Along the way I'd developed a cynical distrust of medical practices (especially in the US and especially where the gut is concerned) as I learned how little is truly known about the human microbiome and how large a role it plays in our health.

Then I had the worst flare-up of my life. I had no energy. I couldn't get off the couch, and I was losing copious amounts of blood to the toilet. I lost something like 20lbs and if it weren't for the generosity of my roommates helping to take care of me, I have no idea what I would've done.

This went on for about six months until I decided that I would try getting on the formerly useless Medical Carousel again. As it happened, I was able to afford a specialist this time around. They set me up for a colonoscopy and, since I was practically starved already, the results were conclusive this time around: I had Ulcerative Colitis. One of my friends had to explain to the nurse who gave me the news when I came around that - no - she hadn't upset me, and that I was just excited to be proven right.

The feeling was elation followed by anti-climax; they'd confirmed what I'd already known. Ulcerative Colitis is more of a syndrome than a disease, which is to say that it's a constellation of symptoms that we frequently see together: It says nothing whatsoever about the underlying mechanism.

What nobody ever tells you about these gut conditions is that they are basically a very slow, unattractive death sentence with a lot of discomfort to look forward to in the interim. The prognosis is something like this: many rounds of consistent steroids, antibiotics and NSAIDS (whichever you don't react to, if any) to hopefully induce periods of remission followed by unexplained flare-ups until your intestines finally give out, at which point your options are death-by-sepsis or surgically removing them in favor of an ostomy-bag.

Having plunged deep into the available literature, I was resolved to fight the inevitable. By this time, however, I had already tried every fanatical lifestyle change that seemed likely to help. Perhaps you will think less of me for this, but having pored over hundreds of medical journals and listening to specialists discuss what little we know of the gut (which - in its own way - is rather a lot), I have concluded that antibiotics ought to be the very last line of defense, ranked up there with chemotherapy in terms of how much damage they do for the benefit of alleviating your symptoms. At least with chemotherapy, you hope to reduce/remove the underlying problem - antibiotics for an IBD flare-up is really more of a band-aid solution.

 Anyway, I was desperate to try something with a little more promise and a little less side-effect. Enter FMTs: It was vexing to discover that here in the United States, FMTs (Fecal Matter Transplants) are an approved treatment to repopulate the gut biome post-chemo, but otherwise unsanctioned; it is apparently a sanctioned treatment for IBD in at least a few other countries. It seemed promising albeit gross. Honestly, most of the pushback seemed to stem from this singular fact: it's basically disgusting. Having neither the money nor the requisite knowledge to make the arrangements, I discarded flying to another country as an option.

You know what they say about desperate people... (please don't try this at home I guess)

I'll attempt to skip the gory details here, but I arranged to perform a homebrew FMT, utilizing a cough-donation-cough from a generous friend of mine who was a stellar specimen of gut health. At the time, he was in the military which meant that he'd recently been screened for all the relevant parasites. In any case, I'd done my homework thoroughly enough to feel confident that I wasn't going to get myself killed.

The results were immediate. My energy levels came back from all-time-low to better-than-ever, and (sorry) my bowel movements were easy and picturesque for the first time in my life. I stopped bleeding. For those who are curious, there were some unexpected side-effects. Namely, during the subsequent two weeks everything smelt like my friend's poo (this was apparently an internal thing, nobody else could smell it - WEIRD) and I had sudden, serious carb-cravings; I'd been low-carb for years and this was very noticeable.

It's been 4-5 years since then and my condition - while not always perfect - hasn't been nearly that bad since. I occasionally have flare-ups but they tend to resolve themselves and my diet/lifestyle seems to be holding my condition in check approximately 95% of the time. That being said, things seem to be slowly worsening over time and I wonder what I'll do the next time around. I've got no delusions about being cured, since IBD seems to have some sort of underlying genetic component and we're still pretty foggy on the mechanism.

The whole thing has soured me considerably on the medical mainstream though, and I'm somebody who is staunchly against hokey bullshit like homeopathic remedies. I suspect there's truth in the nuance here. It's not as though the scientific method is a bunch of shit, but there's a lot more that goes into medicine than simple, on-the-ground experimentation. Individual practitioners are experiencing information overwhelm to an extent that was formerly unimaginable and we all know that there are Incentive Structure Issues around drug research and manufacturing.

I don't know what the moral of the story is. Perhaps that it's an odd time to be alive. I felt compelled to share my story after reading, but I will admit that - looking it over - I feel pretty exposed. Nonetheless, if there's a place to share this, it would be here.

I wish every single one of you the best of luck. It seems like we may need it.

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 asymptomatic or mild; the world presumably doesn't look like debilitating stomach issues are anywhere near that common.

Part 2

Around two years later, I again experienced stomach cramps. I figured that I was well-prepared this time, knew exactly what the problem was, and how to get rid of it. Unfortunately, this time I tested negative for helicobacter and other obvious problems, so I had no idea what to do. (Helpful diagnoses included stuff like irritable bowel syndrome, which essentially means "we don't know what's wrong with you, but we still needed a label to bill health insurance".) My stomach issues lasted for months and got worse until a strategy eventually worked (probably probiotics, maybe assisted by removing lactose from my diet; I never entirely found out).

Also unfortunately, the beginning of my new stomach issues coincided with visiting some new mental health professionals for unrelated reasons. Several of them were all but convinced that my problems were psychosomatic. Again, infuriating and unhelpful. But not surprising - if all you have is a hammer (i.e. a therapist can't diagnose stomach problems), then everything looks like a nail (i.e. psychosomatic).

And none of those doctors will have or could have learned anything from this episode. After all, it's not like there's any feedback channel that would have informed them that their hypothesis was wrong.

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.

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.

“Luck-based medicine” is a phrase I will now be using.

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!

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 that painfully well.

Personally, I've been doing a lot of investigation and understanding into my own health. Understanding my biochem, understanding the various subsystems, keeping good records myself instead of relying on our piss poor medical facility information management to do it. In the current environment, the only person that's going to take care of you is yourself, and it's best to train that up as a skill even if you're lucky enough to have a good doctor. You won't have that doctor forever.

Personalized medicine is a long way away; when I get to the point that I need substantial medical care, I plan to shop around for a doctor that I can spend time with, and hire them on a retainer basis as a personal physician. If nothing else, I'll have them as an advocate to help me deal with specialists who don't know me and don't care.

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 overgrowth). Diagnose by doing a SIBO breath test, and treat with a combination of antibiotics for the initial cull, pre and probiotics until you develop a healthy flora, then be very wary of having antibiotics from then on.
• SIBO is often caused by a hereditary inability to absorb a certain type of dietary sugar, e.g. fructose (fructose malabsorption) or lactose (lactose malabsorption). When eating foods containing that sugar, you don't digest it, which leads to an overgrowth in bacteria which consume that sugar. Diagnose by doing a SIBO test, treat by avoiding that food and/or taking enzyme supplements to help you digest it.
• (I don't know any scientific basis for this point, but it seems to be this way from observation) There seems to be certain 'types' of people: red meat people, white meat people, no meat people or it-doesn't-matter people. If your diet is heavily slanted towards one of the 'types', it's worth trying out the other types to see if you do better on that diet.

There's a few supplements which are generally useful, and good to have in the toolkit:

• Slippery elm powder in capsule form is a great soother, forming a mucus-like material in your guts.
• Activated charcoal capsules are useful for soaking up toxins in the gut, which is an issue experienced with SIBO-related bacterial die off. Be careful with over-supplementing with these, because it will soak up nutrients also.

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 ivermectin, I said I was about 90% sure.

Another way of looking at this is that I must think there’s a 25% chance Vitamin D works, and a 10% chance ivermectin does. Both substances are generally safe with few side effects. So (as many commenters brought up) there’s a Pascal’s Wager like argument that someone with COVID should take both. The downside is some mild inconvenience and cost (both drugs together probably cost $20 for a week-long course). The upside is a well-below-50% but still pretty substantial probability that they could save my life.

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.

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?

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-placebo it, determined to prove it will not work (I even pre-planned my smug and condescending speech about how I did my best to test it and how obviously it did nothing, being just another woowoo herbalist nonsense with no scientific proof behind it).

It goddamn worked. By itself, ashwaghandha did precisely nothing. By themselves, ADHD medicine did something, but at the cost of me belching acid like an overfed xenomorph. Combined, it resulted in a far, far greater mental focus, and no digestion issues at all. Absurdly, combining ashwghanda with smaller dose of amphetamine salts gave better and stabler mental results than just doubling the amph intake.

AFAIK, there are no studies that conclusively prove ashwaghanda really works. Those that do, suggest it as a sleeping aid of all things. And yet. I talked it out with my psychiatrist, and as far as she knows (and she is likely THE expert on adult ADHD in my country) ashwaghanda should do nothing at all.

 

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 patient. I've had doctors tell me, "I don't know what to do with what you're telling me. Most patients wouldn't even be able to notice these kinds  details and put them together, so none of the research captures them." And then they usually decline to try anything based on best guesses after first- and nth-line interventions fail.

It's also true for veterinarians, btw. My cat gets chronic bacterial UTIs. We spent years having vets and specialists tell us, "Nope, unless you spend hundreds of dollars on a cystocentesis every six weeks, we'll insist the problem is behavioral and stress related and not give antibiotics. No, it doesn't matter that the $20 course of amoxicillin worked the last 10 times and that if it did again the symptoms would be mostly gone before the cysto results even come back. No, we don't count it as evidence that you can tell a flare up is coming a few days in advance by the change in urine smell. Your cat just needs to suffer until the culture comes back and you have to deal with her being completely incontinent and dripping blood," (we diaper her at night and when she's infected). "Also, you should have us do a cystoscopy even though we probably can't because they don't make a scope small enough for a six pound cat but you'd have to pay anyways if we try and can't, and you should do an MRI that if it shows anything we almost certainly won't be able to fix it surgically so it won't give any new treatment options," (we've done ultrasounds and they don't find anything). Finally our own vet gave us as many bottles as we wanted and said to use them as needed, and everything was fine for a few years. We also cleaned up her diet and found out a big part of the problem was a prescription gastrointestinal health food she'd been on for a previous condition (or at least, the food interacted with a suspected anatomical defect that no one can find because she's too tiny for tests to show it) (we think she can't tolerate brewer's yeast? maybe?). She only had two infections the whole next year. She's now 13, and just had to switch antibiotics because she started showing signs of resistance to amoxicillin after 5 years, but we honestly hadn't thought she'd make it even to 10.

They tell doctors, when you hear hoofbeats, think horses, not zebras. But there are also deer, and elk, and antelope, and buffalo, and lots of other hoofed animals. And sometimes there are zebras!

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 irritable bowel syndrome (IBS) symptoms I had (yep, I am one of those people who could report that cola makes my stomach feel better - now I finally know why, and I know why it usually doesn't replicate! Most people don't have SIBO). I unsuccessfully tried to change my diet around several times trying to figure out what the issue was, made it worse by being flexitarian or vegetarian for a few months (very little B12!), eventually was so light- and sound-sensitive due to degraded myelin sheaths on my nerves that I could barely sleep properly and became severely depressed and increasingly mentally challenged (thankfully not to the point of dysfunctionality), until I was begging my doctors to do something.

The doctors correctly figured out the B12 deficiency (although there was some luck in that as well), but I only came across the link to my IBS by accident. I was reading The End of Alzheimers to see what I could do to fix my (mild) neural damage, decided to try a low-carb diet, noticed my IBS disappeared, and for many, many months (well over a year) did not think anything more of it, other than being happy that I had a way to manage my IBS now.

...then I looked into why low-carb would even fix IBS, came across SIBO, noticed it made the observation that I should be fine with sushi rice (indeed, I am! That was an observation I'd made a long time ago already) but not basmati rice (indeed, this is bad!), and also that it can cause B12 deficiency.

Once I realised that SIBO is caused by low gut motility, I realised I'd done this to myself by no longer drinking colas, and laughed out loud.

(To be clear, I am sticking to the low-carb diet and do not drink excessive amounts of cola, and I still don't drink coffee, but I'm now using the SIBO self-diagnosis to carefully explore which carbs I can ingest so I can avoid some of the unfortunate side-effects of a high-protein diet (which low-carb pretty much maps to), such as kidney stones. Ow, kidney stones are bad. Do not recommend!)

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 to my old self.

I spoke to my rheumatologist about how well I was feeling since taking the supplements. This guys was supposed to be one of the experts on fibromyalgia. He just laughed at me and said that these supplements were nonsense. I tried showing him the pilot studies but he wasn't interested AT ALL.

I continue to wonder what I could have done differently to make this doctor give me the benefit of the doubt and hear me out. In case something like that ever happens again.

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?)

What form/brand/dose do you take the ketone esters in?

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. And I mean badly, emergency room badly, randomly nearly dying badly, tanked quality of life for long periods badly. Characteristically, some of my values are terribly off in a way that they know from condition x, except condition x also has y, and I do not have y, while I do have z, which seems utterly unrelated and terrible in and of itself, and is common in condition a, for which I also do not test positive, continue indefinitely. I don't know if it is an unusual presentation, or an unusual combination, or outright new, but I am no longer expecting to actually get an answer. 

I've also had your experience of bringing detailed documentation of what has been tested, what I am taking, what triggers symptoms etc. and having that entirely ignored in favour of generic useless advice I tried years ago.

And at some point, when I realised we weren't getting anywhere, but that some of these potential diagnoses had the same cures, and that the cures, if they would fail to work, would have less atrocious side effects than the current symptoms, and that I wouldn't need to get the diagnosis to have them work, that them working was the goal in itself and testable, I switched to "fuck it, so let's try all of these in sequence while carefully monitoring to see which work". I'd have been delighted to set up double blind placebo trials.

Doctors thought this was a very bad idea, saying they could not prescribe without a diagnosis, even though I was clearly very ill and they saw no way to diagnose what made me so ill because my test results were so weird - I would have one alarming marker meaning one thing, but then not the other they would expect, etc. (And that was the ones that believed me, and were very sorry, but figured there was nothing they could do. There is also a special class of doctor who apparently believes that I can't have possibly have had a heavy, unabating period for two full months, or spent a month with diarrhoea so badly I dropped 10 kg, or developed pain so crippling it made working or being happy or even getting decent sleep essentially impossible, because the test for whatever they thought would cause this came back negative, so clearly, I just like hanging out in hospitals for no fucking reason, maybe because hanging out with gaslighting idiots is so inherently wonderful.) We got nowhere. Even as I stressed that my quality of life was currently so bad that I was suicidal, so I literally could not see how it could get any worse from trying the wrong pill. It drove me nuts. I started actively avoiding medical care because it was so disheartening to have hope and have it be crushed each time.

I eventually trialed this, myself, through various roundabout ways. (I got a doctor friends to prescribe the trial meds, after showing her very carefully why I thought these would be good to trial, and how I would ensure my safety during the trial. And I went through a long list of potential supplements one can get online.) And a lot of stuff did nothing much in any direction, really. Some made me a little bad. Some made me briefly really bad, but was dropped and contained without further consequence. But some, and I say this with a relief I can barely express, some helped. Some helped, a lot.

I'm now on a pharmaceutical developed for fibromyalgia. I do not think I have fibro. But it did, massively, reduce my pain levels, so frankly, I do not care.

I'm also on a med I was prescribed years ago, an atypical antidepressant. The doctor involved told me it was forbidden to prescribe for my condition, but he suspected it would really help me, and that it would produce the effects I was seeking without the side effects I was worried about, and wanted to try. It really helped me, incredibly so. I have meanwhile been told that the diagnosis he gave me at the time reflected a medical misunderstanding of several other conditions, that I have a different condition, and that the recommended medication for that is... the one he already gave me, that I am already taking. I still think of that man fondly as a dude who actually helped me.

I am also on ashwagandha, which completely eliminated a severe psychiatric symptom I had, doing something no major medicine could for me. I am certain this is the cause, the correlation is rock solid, and the difference is major. Forgetting this supplement has it return. I have not seen this link documented anywhere. I have no idea why it works. But as long as it does, I do not care. A name for what I have, and understanding for it, would be neat, it really would. But at the end of the day, my goal is to fucking function.

And on 20 other things that make a significant difference, but do not stand out as much as the above.

Beyond pills, I have very, very elaborate documentation of nutrition rules and exercises and habits that help, and guidelines for when it gets bad.

I'm still alive, and getting my PhD, and working at university, and in a long-term relationship, and have savings, and manage to do some activism and have some impact, all in spite of the fact that I think the genes I got were a whole bunch of crap still causing me considerable grief. So I guess it worked, for some degree of "worked".

But fuck, do I feel your anger. I've had to figure out and set this up all on my own, with the medical system for the most part not just failing to help, but making it worse. At this point, I only see doctors to access lab machines, scanning machines and prescriptions, and perceive them as hurdles more than anything else.

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 your body to align cravings with the nutrients a body needs at any given time. Our bodies cannot align cravings with needs when there are hundreds of foods in our diet, but when theres only a few we can apparently manage it.

I highly recommend the chapter of his textbook on food and diet if you are into this kind of thing. Biopsychology by John PJ Pinel.  To be fair,  lot of his pet theories were probably wrong. He also believed that we needed almost no sleep, and that we would be healthier if we ate lots of very small meals.

He loved to tell the stories about how various drugs and treatments had been discovered. Nearly all of them were discovered by accident. Penicillin, Botox, Lithium, Rapamycin, Viagra, Birth control, Iproniazid, Warfarin, etc. They all have stories like yours. 

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 is not a popular opinion but anyone trying spray and pray really really should track their basics like HRV,  Mood and cognitive ability.

EDIT: The other way to spray and pray in one huge chunk is to move to a different country. A large number of variables change when you do. In my case moving to Mexico helped because there are many restaurants that make food from scratch and bakeries that seem to make food without gluten. 

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,

Current research showed that 3-O-Acetyl-11-keto-beta-boswellic acid (AKBA) is the one boswellic acid with strong pharmacological activity; for example, AKBA has a powerful inhibitory effect on 5-lipoxygenase (5-LOX)

The tissue, animal model, and animal and human genetic studies cited above implicate ALOX5 in a wide range of diseases...chronic inflammatory conditions such as rheumatoid arthritis, atherosclerosis, inflammatory bowel disease, autoimmune diseases

Helpfully, this study compared AKBA vs. NDGA, so maybe that could be a useful way to test the mechanism of action (they also differ in their specifics within that too, so that's yet another question mark). Obviously not medical advice and just a curious wondering.

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 of water without me feeling a difference. If I weigh myself while less hydrated one day, and then while more hydrated the next day, that hydration difference will completely overshadow any weight loss. When I was dry fasting there was no increase in hydration, so weight loss became extremely regular. Eating more carbohydrates also tended make me retain more water for a few days, and the amount of food in my gut at any one time were some other confounding variables.