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:

    Me (over 20 pages of medical history and 30 minutes of conversation): I can’t digest protein or fiber, when I try it feels like something died inside me. 

    Them: Oh that’s no good, you need to eat so much protein and vitamins

    Me: Yes! Exactly!. That’s why I made an appointment with you, an expensive doctor I had to drive very far to get to. I’m so excited you see the problem and for the solution you’re definitely about to propose.

    Them: What if you took a slab of protein and chewed it and swallowed it. But like a lot of that.

    Me: Then I’d feel like something died inside me, and would still fail to absorb the nutrients which is the actual thing we want me to get from food.

    Them: I can’t help you if you’re not willing to help yourself.

     

    Or sometimes…

    Me (over 20 pages of medical history and 30 minutes of conversation): I can’t digest protein or fiber, when I try it feels like something died inside me. If I make it my top priority I can get maybe 50 grams of protein a day.

    Them: Oh that’s no good, you need 70 minimum, and really more like 100. Also because I’m a naturopath I’m morally obligated to tell you to give up eggs, dairy, and wheat.

    Me: That’s gonna be hard seeing as those three are 90% of my protein intake and by far the easiest forms of protein to digest.
    Them: What if you ate pea protein?

    Me: Well that’s harder so…worse.

    Them: What about hemp?

    Me: That is even harder than pea protein.

    Them: If you’re not going to try why are you even here?

    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:

    • They failed to contextualize it as a monodiet and discuss the classic monodiet problems.
    • Potatoes aren’t nutritionally complete and don’t have enough protein for people to thrive. They gestured at some of the nutritional deficiencies but I think not hard enough, and believe potatoes have more protein than reported but have not pointed to any evidence to that effect.
    • They tracked weight loss over 28 days but will not be doing a follow-up for six months. Since the default after rapid weight loss caused by an unsustainable diet is immediate regain, this is unconscionable.
    • I haven’t had time to dig into the object-level facts in the argument between SMTM and a persistent critic, but with my monkey social brain it sure does look like SMTM is blowing off well-founded criticism (given in a super aggressive manner).
    • They treat weight loss as an unalloyed good no matter how fast or what the person’s starting weight was.
      • I have not looked into the popular “weight loss not safe above 2 pounds per week” claim and it wouldn’t shock me if it were made up, but if I had an intervention with double that impact I’d spend an hour investigating the claim.
      • Weight loss beyond a certain body fat percentage is bad. You need that stuff.
    • They did warn people about solanine poisoning but I think they should be more concerned about it.
    • Analysis featured a lot of stories along the lines of “Did X on Wednesday and lost 2 pounds on Thursday” and fat loss does not work like that. Two pounds overnight is either water weight or has a lookback period longer than 24 hours.
      • I’m deeply confused about that second part, 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.

    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.

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    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... (read more)

    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.

    6G Gordon Worley III2mo
    I've gotten the advice from a few people that I might be able to eat things made with "heritage" wheat, but realistically I'm not going to make my own bread, cakes, etc. in general to try this out. If this pans out maybe over decades we could effect a shift to different varieties that more people can eat, but I think that's going to require some strong evidence to get food industry players to align around the choice.
    2Tiuto1mo
    Isn't making your own bread really easy, you just need a bread maker put a bunch of ingredients in, press the button and wait. Seems like it might be worth a try. But obviously you know more about your situation than me.

    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.

    2juliawise1mo
    I don't know what the supposed changes in growing and processing wheat are, but a lot of that will presumably have happened by the stage it's flour. So doing the mixing and baking yourself might not change anything.
    9EGI1mo
    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.
    5Morpheus1mo
    How on earth did you privelege the hypothesis that coconut water helps? Is that common?
    5G Gordon Worley III1mo
    It was an accident mostly. I drank some coconut water when I had extreme thirst because I thought maybe something something electrolytes and it cleared it right up even though similar things that should have worked if it was an electrolyte imbalance didn't. Also, I'm not sure where you live, but where I am in the Bay Area coconut water is everywhere and a pretty common thing that lots of people drink, so it wasn't even like I had to try very hard to find it. Before I found it had this medicinal property, I was probably already drinking coconut water several times a month just because I liked it, and drinking water from fresh coconut whenever I could get ahold of one also because I like it.
    1Morpheus1mo
    Yeah makes sense. I sort of pictured you stopping your glutenfree diet to test this, which didn't make any sense.
    3Morpheus1mo
    I live in Germany, coconut water is easily available, but I did not know people actually consuming that regularly.
    3GeneSmith1mo
    This is kind of a crackpot theory, but I wonder if it could explain your experience: Novel viral infections trigger the formation of new kinds of antibodies. We have strong evidence that some viruses can trigger the formation of antibodies that bind to human cells in addition to those of the virus. Two examples of this are bites from the Lone Star Tick causing red meat allergies [https://www.cdc.gov/ticks/alpha-gal/index.html#:~:text=Alpha%2Dgal%20syndrome%20(AGS),other%20products%20containing%20alpha%2Dgal.] and the Epstein-Barr virus causing multiple sclerosis [https://www.nih.gov/news-events/nih-research-matters/study-suggests-epstein-barr-virus-may-cause-multiple-sclerosis] . In the case of the latter, only a very small subset of people who get Epstein-Barr go on to develop MS. Maybe your viral infection caused your immune system to produce antibodies that happened to bind to gluten along with the viral proteins they were designed for.

    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, ... (read more)

    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.

    5AllAmericanBreakfast1mo
    Tl;dr is tl;dr Let's say your problem is reliable and obvious. Get a sample pack of pills and remedies. Take 1 pill at a time. If it's a miracle cure, keep taking it. If not, try the next one. No fancy stuff required. Does anyone sell a sample pack like this? Tl;dr If your mystery malady is obvious, reliable, and rare in the general population, then you can simply try pills one at a time, one pill at a time, to see if they provide a reliable treatment. If so, then this will become apparent right away, and you can keep taking it a few more times to confirm it works reliably. It should only take a few trials to show the pill works for you. If the pill doesn't work, you can set it aside after one try and try the next one. This would not help you if the problem is a deficiency or excess of some compound that takes time to build up. It would only help if the pill had an immediate, obvious effect for your condition - a "miracle cure." This approach requires no fancy statistics, devices, or complexities of taking multiple pills at once. The easiest way to overcome the bottleneck would be if a company sold "sample packs" containing 1 pill of eat type. You'd take them one at a time, see if they fixed the problem, and if they did, you'd buy a larger quantity of that specific pill and keep experimenting to confirm the result. Long: I could imagine a fruitful collaboration between a mechanical engineer, a statistician, a programmer, and a biomedical researcher/doctor. The approach could be Bayes' law-based. Using your problem as an example, here's how it might work: Does eating meat (cooked, store-bought, fresh, 50g) make me nauseous? * P(H): You specify how common it is in the human population for eating meat to cause nausea * P(E): You also specify how common it is for a member of the human population to eat meat and get nauseous, whether or not there's a causal relationship * P(E|H): Finally, you specify how likely it would be for you to get nauseous aft
    3Elizabeth1mo
    TBC: the client is interested scaleable software that people intuitively find useful for experimenting on themselves and can combine selfishly motivated individual data into useful aggregate data. But there's a point here I want to argue. It seems like you're assuming all drug interactions are bad. What if you need three things in combination to see the effect, and then it works really well?
    2AllAmericanBreakfast1mo
    That’s entirely possible. However, it introduces a level of risk that isn’t as present when you take one at a time. It’s unlikely that a given supplement will kill you at normal doses. Such a severe side effect would have been detected and the supplement most likely wouldn’t be sold. But it’s not impossible that certain rare combinations of drugs might have lethal side effects in combination, and that you might stumble across such a combination by chance. The risk of this happening seems in my judgment to outweigh the potential benefit of finding the right drug for a chronic condition faster. Examples: https://www.google.com/amp/s/www.news24.com/amp/health24/medical/backache/news/7-medication-combinations-that-could-be-deadly-20160829 [https://www.google.com/amp/s/www.news24.com/amp/health24/medical/backache/news/7-medication-combinations-that-could-be-deadly-20160829] I’m not certain if it’s plausible an interaction between supplements could kill you in a few days. Even the examples here seem to take a while to work. The only potentially instantly lethal drugs I’ve seen are things like alcohol and heroine. But I would shy away from taking combinations - that’s just where my risk budget is at. I could be persuaded otherwise.
    4degrews1mo
    Wow, yes. I've thought about this before and it feels like this would be so valuable. It's been a while since I've looked into this space but as far as I've been able to tell the Pareto frontier is terrible. I'm going to try to spend some time on this over the next few days.
    2rain8dome91mo
    Collection is really just a matter of finding the right devices and taking the time to use them. Analysis outside of immediate obvious effect can become difficult. If the effect is subtle and drowned in other effects, or hard to measure. If the intervention is not something user can easily or wants to reproduce. If the effect take long time to build up, or is shifted in time from intervention. If the successful effect only happens under several conditions or several interventions together. If the spray and pray approach is dangerous. If the spray and pray approach only hits gold once in a while. Multiple comparison problem (see wikipedia). If user is bad at keeping records. There are probably more. There are many many apps that just do correlation and none that do anything more.Here is a list [https://Finding_relations_between_variables_in_time_series] of both problems and apps.
    2AllAmericanBreakfast1mo
    I agree that the highest-leverage place to start is probably the paradigm of encouraging people with obvious long-lasting chronic problems to look for immediate obvious effects by doing maximal spray n pray. Equivalents of "have nausea from cancer/chemo daily -> medical marijuana -> no more problems." If it was epistemically good enough for Stephen Jay Gould [https://How important is making the right choice, really? Is it more important to just find a project that interests me, and hope I can transfer my skills anyway? On that point, is my choice likely to cut off other options and pathways? Should I aim for a lab that isn't as directly interesting to me but might allow me greater freedom to design an optimal project? Is it worth going for a project that is less interesting but will make me more employable/broaden my options?] it's good enough for anyone. Once we get away from that, I think that systems for collection, analysis, and self-blinding become important. There are a lot of details and trivial inconveniences in any research project, and most people just aren't equipped to work them out on their own. There's a lot you can do to smooth the path. For example, I can imagine a nootropics test kit. It would come with: * A standardized questionnaire that you fill out for every nootropic you try * A sample of nootropics to try along with placebos. Placebos would mimic the appearance of various drugs so it's impossible to tell which is which without deliberately unblinding yourself. the supply would be large enough to give you adequate power given the number of drugs you're trying. * An analytic framework that takes multiple comparisons etc. into account and lets you see if any correlations are statistically significant. * Perhaps packaging drugs in different ways so that you can order more of the things that work, but with a different appearance, to do a more focused experiment on the likeliest candidates. There's a lot of detail to work o
    -1rain8dome91mo
    Two issues, one of which I did not think of, out of like 20. EDIT: I suspect, including from my own experience, that many problems can be solved without resorting to advanced statistics. Often by using through experimental procedure instead. Like eliminating a food type for a month then not doing an intervention for a month. Repeat. Trying out medications sounds like it should be done safely. This safety can only be achieved by monitoring vital signs and analyzing them using advanced statistics.

    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.

    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 ... (read more)

    6ChristianKl1mo
    Have you seen https://www.lesswrong.com/posts/i48nw33pW9kuXsFBw/being-a-donor-for-fecal-microbiota-transplants-fmt-do-good [https://www.lesswrong.com/posts/i48nw33pW9kuXsFBw/being-a-donor-for-fecal-microbiota-transplants-fmt-do-good] ? If doing FMT once helped maybe doing it more frequently with even higher-quality material would help?
    1wslafleur10d
    That's super useful. Thank-you, I'll definitely follow-up on this. I imagine it would be.
    1theme_arrow1mo
    Very interesting story. One question: you said that the prognosis is "many rounds of heavy-duty antibiotics to hopefully induce periods of remission," but my understanding was that UC was autoimmune, and that the standard treatment was steroids or other immune system modulators? That's certainly what the Mayo Clinic [https://www.mayoclinic.org/diseases-conditions/ulcerative-colitis/diagnosis-treatment/drc-20353331] says. Did the specialist mention any of these kinds of medications to you?
    2wslafleur1mo
    Oh, yeah. I should probably amend that. It's basically steroids, antibiotics, anti-inflammatories (whichever flavor you can handle) and a strong recommendation that you increase your fiber intake. I mentioned having been given each of these in roughly equal portions, but then failed to include it as a part of the prognosis. My experience with corticosteroids was hit-or-miss, and I had severe, acute depression as a side-effect (I have never experienced anything like depression before or after, so it was pretty blatant). In any case, I don't really see steroids as being much better, since AFAIK, pretty much everyone relapses w/ steroids as well, and then they have to be adjusted. EDIT: I'm not specifically trying to be overly pessimistic/fatalist here, it's just that I've had a very bad time w/ traditional approaches to treatment for IBD. Take everything I say with a grain of salt, obviously. I think that people should do whatever they can to feel better. I'll update the post, and thank-you for the reply.

    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 ... (read more)

    5EGI1mo
    The cool thing about the "psychosomatic" diagnosis from the doctor's perspective is that it is a convenient, utterly non-disprovable "diagnosis" that offers closure to the doctor: "I found out what is wrong with the guy" instead of admitting failure: "Well, there is a problem but I don't know what it is." It also sends the patient on a long (month to years) therapy loop which offers plenty of time for the problem to resolve on it's own (which happens frequently). An additional perk is that any question or doubt of the patient can be chalked up to "being defensive / in denial" or "uncooperative" which is of course a symptom of the underlying psychopathology.
    -1Marion Z.1mo
    Yes. My uncle, who is a doctor working in gastroenterology, was talking about basically the exact same topic last week. He said that they're highly confident a significant number of patients are having entirely or near-entirely psychosomatic illnesses, but it's incredibly difficult to identify when that is specifically happening, and unfortunately due to time and money constraints they have a tendency to just slap the label on difficult cases. We just do not know enough about the human body and how the brain affects it to be confident outside of extremely obvious cases. Even a lot of what we do know is being reexamined in the last two decades due to edge cases being discovered and lack of rigor in earlier testing.

    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.

    2RedMan1mo
    Description of the thought process and general techniques used to generate an answer for myself puts those techniques at risk. Discussion of the specifics definitely my access at risk, and no I don't need a second opinion. I've thoroughly investigated disclosure, to the point of talking to industry VCs and CEOs about the challenges I'd hit spinning out a biotech startup to commercialize it. For a number of reasons, such a startup is a lame idea. Since I don't do social media, the possible exposure/engagement from simple disclosure isn't valuable to me. Instead, I'll offer an unrelated anecdote, if the structural/market issues that cause the following issue are fixed, I assert that my therapy will rapidly emerge from a more credible source with no effort on my part required, so work on this one instead: I met someone who was involved in an attempt to commercialize 'cell therapy for diabetes'. Someone else can go find the papers if they care. Basically, they sat in the lab and tried 'start with stem cells, convert into beta cells, implant in mouse; diabetes fixed' they then moved to 'peripheral blood cells, treat blood to turn into stem cells, treat again to turn into beta cells, inject in mouse, cells float through blood and park in the pancreas; diabetes fixed' At this point they said 'hey let's see about spinning this out for commercialization', and failed hard. I literally met people who were in the meetings. For market reasons, the project is simply not viable as a business. They talked to everyone who could listen, found no investors, gave up, and went back into the lab. Last I checked the state of the research was 'make gmo mouse that can't produce beta cells period, pull off blood, make stem cells, gene edit stem cells to fix missing gene, turn into beta cells, inject into mouse; diabetes fixed' Scientists are literally stunting on diabetes in the lab while people die because they can't afford insulin.

    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.

    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'.

    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.

    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
    ... (read more)

    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.

    3Celarix1mo
    I am not sure what you mean by this. Do you mean this comment is great and worth the recommendation, or should be buried so that its corpse produces a thousand flowers? Genuinely unsure.

    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.

    3Elizabeth1mo
    Yeah I'd love to have a less loaded phrase for "encourage people to try a bunch of stuff" but Mao did a great job optimizing his.
    1Celarix1mo
    Makes sense, thanks.
    4birdy1mo
    woah. thanks a lot for mentioning SIBO, because somehow i was not aware this was a thing until you mentioned it, much less that sugar malabsorptions can cause this. i've had weird digestive issues for years now, and i always sort of blamed them on my fructose malabsorption (as did my parents and doctors), even though the timing and symptoms didn't really fit, so i guess i will get a test for SIBO now. it would be fitting to randomly find a solution to a health problem under a post that specifically says that sometimes blind luck fixes problems where actual medicine can't/won't.
    3pinkgothic1mo
    Hmm, from the literature I've consumed so far, I had the impression that SIBO isn't actually that common, and it's just one possible (and not particularly wide-spread) reason for irritable bowel syndrome. That said, evidence is mounting that SIBO was absolutely [my problem](https://www.lesswrong.com/posts/fFY2HeC9i2Tx8FEnK/luck-based-medicine-my-resentful-story-of-becoming-a-medical?commentId=FXit9XoHTjevw6goD), so I have no anecdata leg to stand on. (Personally I'm gradually experimenting with the carbs my gut is okay with it, since it has such a strong dislike for most of them (especially starches, for some reason).) Thanks for the tip with the elm powder! (Edit: Erk, sorry, I can't seem to make that link work. This is what I get for not commenting here often!)

    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 bet... (read more)

    9Elizabeth2mo
    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 hemostasis 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.

    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.

    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

    ... (read more)

    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... (read more)

    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?

    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. 

    7Elizabeth2mo
    That does seem a good bit more likely to work than mediocre plant proteins. Interestingly the first and only medic to recommend it to me did so after the bospro started working, shortly after I shared that news. It ended up giving me digestive side effects that would have been worth working through before the miracle but pretty borderline right now.

    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.

    8Elizabeth2mo
    I'm pretty sure gut biome renovations were somewhere between pointless and insufficient for me but agree that they should be very high on the list of things to try for many problems. I'd put them in luck based rather than model based only because we don't really know how to do them.
    3shminux2mo
    Yeah, figured you'd have tried, just that I didn't see you mentioning it, so brought it up.
    1Nanda Ale1mo
    Gut biome was my first thought too as an explanation. As far as I can tell fixing gut biome with things you swallow is extremely difficult. Probably not impossible, but fragile as heck. The only thing that can somewhat reliably do it is a fecal transplant. Probably because you are moving in a whole ecosystem at once so the odd of it sustaining are higher. This post makes me want to try ketone esters because I do notice I am very productive when fasting, where I am in ketosis. But I only do it a day or two a month because I like food too much.

    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?

    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... (read more)

    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... (read more)

    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... (read more)

    3carrots1mo
    I came to a similar conclusion about limited diet causing weight loss. I moved to a small remote town in Europe a few months ago and lost my excess weight with no effort, after having lived in large North American cities all my life. I shop mostly at a local mini grocery store that has limited stock, so my diet tends to be boring and my appetite small. As soon as I stock up from a supermarket with a variety of yummy unusual foods, I start gaining weight. I don't limit myself to 7 ingredients though. Rather, I eat the same thing for lunch everyday, and rotate through a handful of simple recipes for dinner. This also keeps my IBS-like symptoms under control, but I don't know if my GI is happy due to the ingredients themselves, the lower volume of food, or the fact that it isn't exposed to novel foods as often. Or a combination.
    3AnthonyC1mo
    I can see how that might help me eat less, but unless you chose the seven very carefully to be potentially nutritionally complete, sustaining that seems like a path to the kinds of deficiencies that made the agricultural revolution cost humans half a foot of height for most of the last ten millennia.
    -2Marion Z.1mo
    The most effective diet for weight loss? Seems plausible. The most effective diet for being healthy, that sounds extremely unlikely. Even if your seven foods are nutritionally complete you're not likely to be eating them in the right balances. Intuitive body regulation sounds good there but in general, our bodies are actually not so good at guessing that kind of thing.

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

    4Elizabeth1mo
    I use KE4 [https://amzn.to/3D1Au7r]. Now it's typically 5ml before bed and sometimes I forget that, but when I was doing longer intermittent fasting I'd do 10-15ml at night, 5-10 in the morning, and 5-15 before work outs. My ability to fast has increased, relative to what I did pre-ketone-esters, even when I don't take them or take less. I also quit soda when I started them and never restarted, even when I was taking almost no ketones. I think there might have been durable changes from it.
    1Maxwell Peterson1mo
    Thanks!

    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? 

    5Elizabeth2mo
    Clearly there is high variance in response to ketone esters. If you're asking if in my study there was high variance averaging out to zero the answer is no, I checked for that specifically. I do suspect this is problem with a lot of other research though.
    2TekhneMakre2mo
    Thanks. (I was asking both questions.)

    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.

    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. 

    There really should be an aggregator for medical knowledge found on disease forums and posts of this kind (is there one?)

    3Elizabeth1mo
    Crazymeds used to do this for psychiatric meds but no longer exists. I think it's hard to formalize because it's a lot of work, hard to capture the value of ethically, but very easy to capture the value of doing unethically.
    1kparker1mo
    how so? forum members submit info voluntarily and anonymously natural experiments of your kind i.e. spontaneous resolution with some unexpected agent or lifestyle change - and other best practices based on n,000's of years living with a condition - there has to be value there for drug developers and clinicians. The work is authenticating claims and maybe matching people to scientists?

    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 ... (read more)

    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.)

    2Ben Pace1mo
    Hm, I also inherited my father's issues on this (though not the same triggers as you), and I was really hoping you were going to give me a random cure to try.
    2CronoDAS1mo
    Well, although the triggers are unusual, I haven't had any need to resort to unusual treatments to keep the heartburn itself under control; avoiding my triggers is generally enough, and I use antacids when it isn't.

    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... (read more)

    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.

    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,

    Curr

    ... (read more)

    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... (read more)

    [+][comment deleted]1mo -70

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