11 ms·
I built an open source AI tool to find my autoimmune disease
- sethammons 2y agofwiw, half a dozen doctors missed the diagnosis on my wife. Given the same description of issues, chatgpt correctly identified multiple sclerosis, as later confirmed with imaging.
- jimnotgym 2y agoIt also wrongly suggested MS for me, so shall we say 50% success rate?
- sethammons 2y agopretty sure that's how it works: either it does or it doesn't. 50% it is </s>
- Y_Y 2y ago50% precision, 100% recall For something like diagnosis where you can type things out with specific tests I think this isn't bad.
- cadamsdotcom 2y agoAwesome. It’s great what is becoming possible in healthcare when you can keep asking questions until you’re no longer confused, and keep feeding data in, more than any overworked doctor could handle. It won’t always be correct, and needs all the right disclaimers. A friend of mine whose father is sadly very ill, made use of ChatGPT to interpret the oncology reports written about his dad. It helped him have deep technical conversations with multiple specialists and advocate for his dad, culminating in his advocacy for a treatment - that none of the specialists had thought of - which proved critical in extending his dad’s life. Now my buddy can chat to specialists in their own language and hands the info to ChatGPT to turn into layman’s terms for his dad - all of which my friend can check over for accuracy so he knows his dad is getting correct non-technical explanations. That is massive empowerment.
- yieldcrv 2y agoThis has been my experience the last 2 years as well In my local area’s subreddit, people are entirely dismissive of AI and will keep moving the goalpost about why you cant use it. It hallucinates! (But you can fact check it and I wrote that disclaimer) It warms the planet more than other research! (…. you’re not distinguishing between self hosted and data centers….) But its Los Angeles and writers and actors and VFX are all getting replaced, so they have to keep saying ignorant stuff to sound relevant
- 52-6F-62 2y agoNo. You have to ask yourself why it hasn’t been used in this capacity more, and why so many billions are spent on pursuing crushing the arts and crafts into oblivion. Given the published and (and currently expressing) philosophies of the primary investors and shareholders of those companies, it is no longer any mystery why!
- jjallen 2y agoWhat do you mean it's no longer a mystery? I don't understand. Wouldn't the investors and shareholders want more usage of their products, almost regardless of the subject matter?
- brookst 2y agoCan you elaborate? I haven’t seen any of these philosophies that are apparently about crushing art. As a part time artist, AI has been great for me. I’m creating more, and spending less time on scaffolding (I am a middling-at-best programmer). I’m feeling empowered, not crushed.
- deleted 2y ago[deleted]
- andrewfromx 2y agoWe are getting one step closer to: A "medbed" is a fictional device that has gained popularity in pop culture. It is often described as a medical bed that can instantly cure any disease or injury! If I ask claude to do a thought experiment on what year this fiction would be real he says "2045-2055"
- belter 2y agoBut you need to go to Elysium to get it. DOGE will be responsible for deciding if you can...
- energy123 2y agoThe banal evil will be that the magic machine is illegal because the medical regulator is controlled by careerists who use government to protect their jobs at the expense of the common good.
- Schiendelman 2y agoThis is already somewhat true! "We" decided that 'privacy' is more important than us as individuals allowing our doctors to use existing LLMs to help them diagnose us (though so far, study shows human doctors don't effectively use LLMs even when they do have access).
- toss1 2y ago>>"We" decided that 'privacy' is more important Umm, the importance of privacy was decided to prevent insurance companies from abusing your data & history to jack up your rates or refuse coverage. >>us as individuals allowing our doctors to use existing LLMs to help them diagnose us What prevents you from giving your human doctor permission to upload your data/history into an existing LLM to assist your diagnosis? Just fill in the HIPPA form and hand it to their administrator... >>study shows human doctors don't effectively use LLMs even when they do have access YUP. That is the problem; they are not yet taking as full advantage as possible. Although I have read that it is spreading in radiology where there is solid evidence the AI models do better, so it might be just a question of medical professionals being conservative and waiting for more solid data...
- bell-cot 2y agoYep. While a few individual medical practitioners may actually (vs. "professionally pretending") care about your health, the vast majority of them do not, for practical purposes. And the system itself most definitely does not. (You were racking up the visits and bills, and each little practitioner was going through all the proper motions & procedures for his or her own little pigeonhole - so everything was going perfectly, from the system's PoV.)
- lm28469 2y agoYou have to wonder where we fucked up because clearly it wasn't like that even 30 years ago. A few generation ago you had family doctors who knew pretty much everything about you from your birth to their retirement (or death even). Even I had that as a kid, and I'm not 40 yet. Now we have 10 minutes online consultations with random doctors we'll never see again. Last time I went to mine they refused a preventative blood check, the reason? "it's too expensive and you're healthy anyways". I went to a private lab and paid for it, it ended up costing less than 10 euros, meanwhile I pay 500+ a month for health insurance.
- sarchertech 2y agoIn the US you can blame private equity for that. Buying up practices and pushing them to turn a profit by maximizing patient load and minimizing interaction times etc... We have far more doctors per capita than we did in 1960.
- bell-cot 2y ago> In the US you can blame private equity for that... Only partly. Where I'm living (SE Michigan), one of the two huge local hospitals is owned & operated by a major research university. The other one by a major Catholic non-profit. My (older) family & friends have been on the receiving end of lots of "the system cares only about itself, and many of the individual doctors obviously feel the same" horrors at both of those hospitals. And it's been that way for decades, minimum.
- fujinghg 2y agoThis should probably be phrased as: Why didn't the medical procession find my autoimmune disease after $100k and 30 hospital visits?
- Schiendelman 2y ago"Why didn't my Windows Phone do this?" Old broken systems tend to get replaced, not improved.
- deleted 2y ago[deleted]
- cainxinth 2y agoThey offer an explanation in the intro: > The most frustrating part wasn't just the lack of answers - it was how fragmented everything was. Each doctor only saw their piece of the puzzle: the orthopedist looked at joint pain, the endocrinologist checked hormones, the rheumatologist ran their own tests. No one was looking at the whole picture.
- moffkalast 2y agoCause they're fallible, overworked humans. We like to pretend doctors are superhuman but they're just the same as the rest of us. The more you go beyond the common diseases that they see a hundred times a year the more your chances of getting the right treatment approach zero. Occam's razor is usually right when diagnosing people, but it kills the uncommon cases.
- apwell23 2y agoexcept it did even in this made up story "it wasn't until I visited a rheumatologist who looked at the combination of my symptoms and genetic test results that I learned I likely had an autoimmune condition." It should prbly be phased as "why ppl fall for any BS on the internet"
- fujinghg 2y agoI think you might have hit the nail on the head there.
- apwell23 2y agoIt wasn't until I visited a rheumatologist who looked at the combination of my symptoms and genetic test results that I learned I likely had an autoimmune condition. hard to tell what exactly was his autoimmune disease and why decided to visit a rheumatologist . Who ordered the genetic test? doctor who ordered the genetic test supposedly ignored all his other symptoms and interpreted results in isolation? I call BS on this. Sick of these AI hustlers making whatever shit up.
- echelon_musk 2y agoWhere's the hustle in a free local only model? I don't see the angle.
- bdhcuidbebe 2y agoYou dont see the angle? Hes hunting for a shitty AI job.
- apwell23 2y agointernet points. Bullshitting. entertainment. validation. putting that github on his resume. direct Money is the only angle in the world?
- red-iron-pine 2y agothere is indirect money. and occasionally self-gratification.
- mikeyouse 2y agoThis wouldn’t be the first time someone in that AI sub made up a convoluted scheme that was only solved when they brought AI into the picture. There have been a few confessions to that nature in the past and the ‘irony’ is that the stories were written with a prompt of something like, “tell a story about AI solving this specific problem that would get sympathy from tech enthusiasts who want to believe in AIs ability to solve complicated problems” which is another level of mindfuck.
- 2y ago
- pj1115 2y agoThis is super cool, but maybe it's important to distinguish projects like this from frontier medical AI research (i.e. new models). This however does exactly what lots of health advocates and even pharma companies have been getting at for decades: informed doctor-patient discussion and patient self-advocacy. Organising and interpreting medical records is an awesome use case. I imagine any potential user of a tool in this state would know what be wary of, but I do worry a little that LLMs have been trained on bad health advice or misinfo, and there will be very limited training data from real patient diagnoses. Even if dangerous data is minuscule in training terms, can good prompting de-risk dangerously bad advice?
- d--b 2y agoThis is a widespread problem in the medical world, and it is infuriating. That said, self-diagnosis using a AI tool makes me cringe. As an engineer, I know I could use this properly the same way OP did. As in, I would look at what the AI is telling me and triple check with all the information I can get from actual medical reference books. Also, I know I am fairy good at not making up symptoms not to match some diagnosis. But I would never put this in the hands of people who visit webMD twice a week only to conclude that they probably have toe cancer.
- eviks 2y agoWhy not? What do you think will be materially worse vs today when a simple website leads to such conclusions?
- d--b 2y agoBecause AI still gets a lot of things wrong. And because UI matters. AI chat seems more tailored to your own problem since your giving it your inputs. And AI chat is more authoritative, cause it mimics the way doctors talk.
- disjunct 2y agoTo be a bit uncharitable: a sick person seems to want certainty more than anything, which they can project onto an AI much more easily than through work with a careful doctor.
- bdhcuidbebe 2y agoBecause AI, ChatGPT in particular is programmed not to offend you, and will compliment you for your ”great” analysis and only make your delusion worse.
- jjallen 2y agoAI told me about why eating lots of meat might make me feel dramatically better. There are genes that affect the amount of an enzyme that breaks down Folic Acid into methylfolate. I have multiple of those genes. 23andme knew I had these genes for more than a decade. Multiple doctors I told about this basically said nothing and knew nothing about this.
- mentos 2y agoI’ve felt my best on a carnivore diet but couldn’t keep a stable weight so I fear it’s the equivalent of saying I felt my best when I was slowly dying of hunger? ha I have done 23andMe where can I look for those genes?
- yuppii 2y agoCould you elaborate a bit more about the diet and its effects?
- gns24 2y agoYeah, I'm always a bit suspicious of apparently effective dietary changes which result in a calorie reduction - often different people report completely different dietary changes helped them, but one thing they all have in common is being in calorie deficit. There are plenty of studies showing that caloric restriction calms inflammatory responses which are responsible for the majority of common diseases. Without balancing the energy intake, I'm always slightly suspicious that any improvements with changing what I eat are actually caused by the change in how much I eat.
- ddorian43 2y agoThere are many people who've never been fat and felt better in keto/carnivore. Example:me. Another example is https://reddit.com/user/MythicalStrength https://reddit.com/user/MythicalStrength who's a strongman competitor. > often different people report completely different dietary changes helped them Nobody fixed T2D, (some types of) epilepsy, (some cases of) mental illness like bipolar/psychosis on high carb or high protein.
- amazingamazing 2y ago> The most frustrating part wasn't just the lack of answers - it was how fragmented everything was. Each doctor only saw their piece of the puzzle: the orthopedist looked at joint pain, the endocrinologist checked hormones, the rheumatologist ran their own tests. No one was looking at the whole picture. It wasn't until I visited a rheumatologist who looked at the combination of my symptoms and genetic test results that I learned I likely had an autoimmune condition >> It wasn't until I visited a rheumatologist who looked at the combination of my symptoms and genetic test results that I learned I likely had an autoimmune condition
- kubb 2y agoYeah, he already had the information from the doctor when he prompted GPT, but I wish the project a lot of success, may it help people.
- sarchertech 2y ago>For 5 years, I struggled with mysterious symptoms - getting injured easily during workouts, slow recovery, random fatigue, joint pain. Those symptoms could be caused by almost anything. In the end the author says they "likely have an autoimmune disorder". To be honest just from that list of symptoms, my first guess would be aging. I really don't buy that this person's AI tool did anything here. I think they probably got lucky even assuming the "autoimmune disorder" is the actual cause of these symptoms. > I spent over $100k visiting more than 30 hospitals and specialists, trying everything from standard treatments to experimental protocols at longevity clinics I get it that this sucks. But when you have a list of vague symptoms that aren't very serious, could be caused by anything, and your records show 30 visits to hospitals and specialists, and you start talking about experimental life extension treatments, the vast majority of doctors are going to write you off almost immediately as a hypochondriac. It's the same in any profession. I worked at Geek Squad during college. Someone comes in 30 times because "my computers feels a little slow", we've ran every test we can think of, and nothing is wrong. In that case I'm going to place the blame on either user perception--this specific customer has unreasonable expectations about what is slow and fast. Or there's a minor non-serious issue with his computer that no one is likely to be able to diagnose without doing something seriously invasive that is likely to cause more harm than the issue.
- ANighRaisin 2y ago> It wasn't until I visited a rheumatologist who looked at the combination of my symptoms and genetic test results that I learned I likely had an autoimmune condition AI didn't actually give the initial possibility of having an autoimmune disease.
- yieldcrv 2y agoThe next paragraph says the AI gave that answer before the rheumatologist visit So it’s functioning as a second opinion
- Aurornis 2y ago> that I learned I likely had an autoimmune condition “Likely” had? I read your post and comments last week when you copied it across a lot of subreddits, but I feel like the specific details of your story are still changing. I understand you want to promote your side project, but the way you’re vaguely promoting it as having solved a medical mystery is playing a dangerous game with people who are desperate to hear answers from your tool.
- skirge 2y agoHealthcare has to follow procedures to guarantee it's "public service" (same quality for everyone). Second it's main goal is to verify that sick leaves are not overused because it has bigger impact than curing one person.
- alecco 2y agoChina is investing a lot in "AI hospitals".
- bfeynman 2y agoFunny enough this is almost a canonical example of data leakage and the incorrect (or extremely extrapolated) assertions that AI can solve what seems like majorly important and valuable tasks. There are 2 very pertinent observations needed. 1. The state of the healthcare system, assuming this is the US, care is based on triage and constantly requires a number of hoops to go through to get deeper analysis or specialists, an emergent property of not having value based care. They do this to save costs while ensuring you are not going to die. 2. They are using and feeding in data from the doctors visits, which means that AI is not really providing a diagnosis in a way that can replace anything necessarily. The fact there are many visits would help a flow chart decision rule out/in possibilities. You see a lot of this in AI hoopla and even in some of the industry papers where AI is relying on data that only becomes available because of a doctor's orders, so you are not "replacing" it per se. If anything this demonstrates that value based care would provide better experience and outcomes for people with hard to diagnose conditions.
- deleted 2y ago[deleted]
- bena 2y agoAutoimmune is incredibly broad. Also, guess what rheumatologists specialize in. I'd give you a hint, it starts with 'a' and ends with your body's immune system mistaking healthy tissue for a disease. Technically, the rheumatologist didn't do anything any other doctor didn't already do. They saw the problem in terms of their specialty. Which isn't the worst way for them to approach things. I will go to a foot doctor if I believe it's my foot. A joint doctor for my joints. Going to specialists is pointless if you don't have any idea of what's going on. That's why GPs exist, to try and steer people to the appropriate specialist.
- cjbgkagh 2y ago$100K 30 doctor visits, no answers, sounds like my experience with Ehlers Danlos Syndrome (hEDS), perhaps I missed it but did not see what the final diagnosis was. Autoimmune could be a lot of things. If I feed in my symptoms today into AI, the same list I gave to doctors, I do get hEDS and specifically I get TNXB as a candidate gene. I don't include my WGS DNA data which came after I stoped bothering with doctors. AFAIK only specialists will diagnose hEDS and AFAIK absolutely none would predict TNXB. They call it clEDS instead and consider it 1 in a million, only if you have a specific TNXB SNP and it’s homozygous. Where I think most of hEDS is caused by presumed benign TNXB SNPs. Even the studies that specifically search for DNA candidates for hEDS skip over TNXB due to the belief that hEDS is rare and TNXB SNPs are common. So I don’t know where AI it’s getting its info from but the TNXB theory is mostly a patient led theory held by some of us who have it. There are some fringe giftedness researchers who focus on the RCCX gene cluster - which incidentally cause a ton of autoimmune conditions. So it’s definitely a situation where I think the answers from AI are far better than from doctors - I would have found out decades sooner. hEDS is such a perfect match for my symptoms that it becomes obviously true once I researched it so even if the AI guessed wrong it wouldn’t be worse than all of the doctors who guessed wrong. One even told me I should have thyroid surgery, thankfully I had already lost faith in them by that stage.
- itchyouch 2y agoWhenever I come across folk with hEDS-like symptoms, I always like to bring up fluoroquinolone (FQ) antibiotics, as a "btw do you know about this?" I have a suspicion that some non-trivial amount of the non-genetic EDS folks may suffer from fluoroquinolone antibiotic toxicity. Among the many effects of FQs is how it can cause a net-loss of collagen in the body. It increases MMPs that breakdown collagen in the body. Part of the reason FQ antibiotics have a black box warning for tendon tearing. I have a family member that was sure they had hEDS, but it turned out to be FQ toxicity. 20-30 courses over years that would degrade their health, one small bit at a time, unbeknownst to them. While safe for many, for some amount of the population, it can cause what feels like every bodily system slowly failing. The frustrating bit of it all is how resilient the body is, and most common blood work shows up "normal."
- qntmfred 2y agowhen i was a kid pretty much every spring I would get tons of little blisters all over my fingers, arms and sometimes legs. It would last a few weeks and then clear up. My hands would get so swollen and itchy that I was basically useless for those couple weeks. The doctors never knew what it was, they'd just give me some steroid cream and move on. as an adult I'd get it every ~5 years or so. I got it last year and I decided to talk to ChatGPT about it and within a few minutes it had correctly diagnosed it as dyshidrotic eczema. 30+ years of wondering what it was and finally I found out, thanks to AI. what a time to be alive!
- rocmcd 2y agoDyshidrotic Eczema is also the first result if you literally Google the words "little blisters all over my fingers, arms and sometimes legs".
- disjunct 2y agoDid you seek prescription treatment after your AI-diagnosis?
- qntmfred 2y agothe treatment was the same (steroid cream) but now that I know what it is and what causes it (for me it was probably too much sweat on the hands from wearing a baseball glove since baseball season was often when i'd get it) I can hopefully better avoid it going forward.
- aantix 2y ago
- srid 2y agoIt'd be cool if someone could package this to be runnable with Nix, similar to https://community.flake.parts/services-flake/llm https://community.flake.parts/services-flake/llm
- RobotToaster 2y agoCan it work with DICOM files?
- klaussilveira 2y agoTo everyone here being dismissive of AI: you have no idea how it feels like to know you have something wrong, but receiving nothing but shrugs from the experts that are supposed to help you. I have experienced the very same thing: an orthopedist looked at my joint and wrist pain, the endocrinologist checked hormones, the rheumatologist ran their own tests. If I had to rely on my primary doctor to help, I would be taking ibuprofen and some other anti-inflammatory of their favorite big pharma. I did a large amount of tests, including RSI and carpal tunnel, chasing what could be the source of my issue. I was only able to find out that I have Ankylosing spondylitis by talking to other people online, and asking my primary care doctor to test me specifically for the HLA-B27 antigen. I was just lucky to receive help from a random person on the internet: "why don't you check for X". I imagine all the other people out there that were not lucky as me, or did not have access to that information. If AI can help with this, then it is great.
- TechDebtDevin 2y agoIve basically given up on US medicine
- klaussilveira 2y agoMy journey was done in two very different countries: US and Brazil. The exact same treatment approach and behavior from doctors.
- xtracto 2y agoI have had a similar experience. But in my case all specialists said it was IBS and "just don't get stressed". I had hundreds of tests by dozen doctors in 3 countries: Mexico, UK and Germany. At the end I found out the root of my problem by mere chance with a neurologist in Mexico. So I welcome the use of LLMs and other technology for this! Doctors are just humans, in every country.
- greentxt 2y agoThis is the way. If we all did that, our health care system would be the best the world has ever seen. We mostly do the opposite. We give up on our own agency in terms of our health outcomes, then get on ozympic and demand cheap insulin to go with the cheap soda pop and fast food we love so much.
- bdhcuidbebe 2y agoI honestly cant tell if this is satire (well made!) or if OP gone bonkers drinking the AI cool-aid. The doctor didnt give you a diagnosis, they told you a likely cause and thats because your symptoms are all over the place. Its direcly dishonest pretending that this could help diagnose people who may or may not have real issues. You don’t know that, the doctors don’t know that and AI certainly wont inform you it has no clue.
- cjbgkagh 2y agoOk fresh post as this is fascinating for me as someone with hEDS and who does ML, this has blown my mind and confirmed to my satisfaction that LLMs have the potential be far better than doctors in diagnosis. Is this due to a mistake in inference or is it a deeper understanding? I don't know. It's possible that there is a consistent mistake in reasoning by the LLM and it just happens to arrive at a belief that I agree with. I’ve performed a test with the simple questions, "what are the genetic candidates for hEDS?" followed by "where did you read about TNXB as a cause for hEDS?" My hypothesis is that heterozygous TNXB SNPs beyond the known clEDS variants cause a substantial subset of hEDS which occur on an autosomal dominant basis. Most research considers clEDS far too rare (1 in 1 million) to be a significant factor in hEDS diagnosis, and heterozygous TNXB SNPs is considered far too common to be a cause for hEDS. I think it is the hEDS classification that is wrong and hEDS is indeed common, just rarely diagnosed. Enough to have causal heterozygous TNXB SNPs. In testing OpenAI, Gemini, and Deepseek all give TNXB as the first answer for hEDS candidate genes. When pressing for references most give normal clEDS references which suggest that the LLMs are forgetting that clEDS is not equal to hEDS and clEDS as defined is extremely rare. When able to give specific references for heterozygous TNXB and hEDS OpenAI and Deepseek only gave Zewers, M. C., et al. (2003) https://pmc.ncbi.nlm.nih.gov/articles/PMC1180584/ https://pmc.ncbi.nlm.nih.gov/articles/PMC1180584/. Gemeni did not give such references. DeepSeek did use the HEDGE study as a reference in support of heterozygous TNXB for hEDS but the actual text from the source is “Earlier research trying to answer this question suggested that a gene known as TNXB may be responsible for both some cases of hEDS and a different type of EDS known as classic-like EDS (clEDS). It is likely that this is true, but this has proven to be a difficult gene to understand, and at best it represents a very small percentage of hEDS patients.” (https://www.ehlers-danlos.com/heds-hsd-research/#1694081826099-339fe523-0fcf https://www.ehlers-danlos.com/heds-hsd-research/#16940818260...) Possibly again in reference to the original Zewers paper. It could be that the Zewers paper is referenced by many other papers as a plausible hypothesis without providing contradictory evidence, perhaps the LLMs see this and give the paper much more weight because of that. Is the LLM incorrectly including it due to confusion with clEDS? Are doctors incorrectly excluding it for the same reason? I would love to know.
- aantix 2y agoWith the Apple Health app, I've set up imports from most of my the major lab providers that I've used. I get notified when a new result comes in. I can export all of the records in to a single pdf - I airdrop that PDF to my Mac. Is that single pdf importable? And does the system know enough that this pdf represents multiple tests/labs/blood pressure readings/letters/etc?
- enragedcacti 2y agoThis type of application makes me a bit queasy, but given massive issues with access to healthcare I think this sort of use of LLMs is an inevitability. Is there anything that can be done to make it more robust? Beyond the obvious issues with LLMs, confirmation bias seems like an especially big problem for a tool like this. It is seeing only the tests doctors ordered, only the notes doctors bothered to take, only the symptoms the patient thought were relevant, and so on. Would it come to the same conclusions if plausible synthetic results for other tests were included? Could it reliably predict results of a removed test given its previous conclusion? Could it predict the next action (test, referral, prescription) given results of a test? Is anyone working on this kind of adversarial approach to LLM outputs? Obviously LLMs are far from ideal for an application like this but could this type of probing for internal consistency improve the error rate and allow for some measure of confidence?
- zekenie 2y agoRAG + analysis on health data has huge potential. We need to tread carefully, obviously, but I have also used these models + RAG on personal health data at times when the docs were scratching my head. It was very helpful, although I approached it a bit differently. In my case it was my infant in the hospital for breathing / eating issues. I took data from the network tab in mychart and added context additional context, then asked Claude questions. My main goal was to be prepared for rounds in the morning. I wanted to understand what types of information each test was going to give me. It was pretty good! Unsurprisingly, it did hallucinate sometimes or miss some nuance. But, I knew I was talking to something that did that. It was helpful for me, even with errors. I didn't, however try to just say "hey given all this what's going on with my baby" On another topic: If I were you, I'd make this thing speak FHIR or some other common format. That'd make using this thing in an ecosystem of other tools a lot easier. There are even FHIR graphql apis you could just polp on top maybe.
- Zufriedenheit 2y agoSame happened to me. After visiting many doctors, the last one told me he still has no idea what could cause my symptoms. After that, I uploaded all my test results to ChatGPT. Got the diagnosis right away. Asked it what test I could do to confirm it. Went back to the doctor. Did the test. Confirmed the diagnosis and started treatment.
- martin_ 2y agoThis is neat - I built something in a similar vein recently but less productized, good work! I have a habit of moving around (thus changing doctors) and a lack of a history / being able to easily consolidate them has been a reoccurring pain. I recently had a full physical while in Thailand and there was some potential concern around my labs & some imaging --- of course, without history it was a "check again in 6 months!" which prompted me to capitalize on Gemini's PDF parsing abilities... I still have work to do, but it's amazing what you can do in just a few hours now: https://health.martinamps.com https://health.martinamps.com
- abiraja 2y agoThis is really cool! Would love an open source version of it.
- martin_ 2y agoi have a rudimentary pipeline that takes in a ton of data, converts to json & markdown and then i used claude and o1 pro to generate the dashboard. That is to say, there are manual hops. How would you want it packaged / what would be useful?
- w10-1 2y ago(It's such a pain these days to disambiguate "AI", as both artificial intelligence and autoimmune diseases) Autoimmune diseases have non-local effects, both in time and space, and thus are very hard to investigate or diagnose. They have population dynamics (e.g., as you mount a response to an infection), which means feedback effects. They're also sensitive to and productive of systemic stress and anxiety, so the feedback runs all the way to neurology, psychiatry, and environment. In a sense we have multiple overlapping immune systems, with triggers and effectors that interplay differently in the gut, brain, lungs, and other organs. Each organ has evolved locally-appropriate systems, and are also subject to the blood/lymph-borne systems, or might be more encapsulated/resistant like brain or distal, poorly-perfused tissues. Then it's complicated by personal history and genetics. E.g., some forms of EBV with some HLA genetics produce B-cells that happen to love a protein on the foot process of myelin; this truly does come down to a specific molecular antibody shape, now prolifically produced... So aside from the few diseases that have single point of effect, autoimmune diseases are even more personalized than cancer (which at least is tissue-local), making research into causes even more difficult. I don't doubt that AI might arm patients with enough possibilities to be a lot more persistent in seeking help, or that sometimes a possibility might be right. I do think that a lower threshold for analytical testing would help, but that would require a higher threshold for acting on results. AI has been shown to be better at image recognition than radiologists, and to have more extensive differentials for primary care doctors, but both are applying implicit likelihood filters based on what can be investigated. I'm fairly confident investing in patient-driven LLM-based diagnosis for autoimmune disease using existing tests and records is a waste of time and money. I'm looking forward to a world where we gather more data more systematically, and use analysis to find connections that can knit together disease dynamics we can validate and block. But the most impact would be a world where anyone can access all their health information as data, and where doctors don't spend their evenings with EPIC.
- arunabha 2y agoI'm conflicted on this. On one hand, no one can seriously argue that the healthcare system(esp in the US) is good or even adequate for the edge cases. The process is a lot like navigating tech support where the initial layers are oriented towards rapid triage and (barely) adequate resolution of the most common cases. Note that this does not mean that the individuals are not capable of more. It's just that the system is not set up to do so. Getting through to 'L2' support can be just as frustrating as in the tech world. On the other hand, interpreting domain specific data takes a lot of training and experience. Somewhat similar to looking at logs, knowing what to ignore is often more important. LLMs can dump a bunch of possible causes, some of which are perhaps hallucinated, however knowing what next steps to take with the results isn't really something most people will be capable of. Perhaps the most likely immediate benefit for tools like this might be for the individuals who are motivated and determined enough to put in the time and gain the knowledge necessary to be effective with such tools(like with most things in life). One thing is for sure though. As others have pointed out in this thread, you need to be your own advocate in the healthcare system.
- agencypilled 2y agoThis provides very little benefit over pasting into chatGPT at the moment. As someone who also has an autoimmune illness and has been heavily leveraging AI tools, you need extremely clever reasoning to get the challenging cases solved, and anythign below that is just paste-able into AI.
- reportgunner 2y agoPeople who think AI is magic sadly don't care.
- burke 2y agoAnyone doubting this really has no idea what they're talking about. Set up a "Health & Fitness" project in Claude (or whatever). Feed it: * Basic data: height, weight, age, sex * Basic metric snapshots from Apple Health or whatever: HRV range, RHR, typical sleep structure - go through everything and summarize it * Typical diet (do you track it in MFP or Cronometer? Great, upload a nutrition report) * Any supplements and medications you take * Typical exercise habits * Any health records you have - bloodwork results, interpreted imaging results, etc. * Family history like you would describe it to a doctor * Summary of any health complaints * Anything else that seems relevant. Then go through a few conversation loops asking it if there's any more information you could provide that would help it be more useful. Then ask it things like "Given <health complaint>, what should I be doing more of? Less of?"—or "Please speculate about potential causes of <thing>". Or, even if you don't have any particular health complaints you're working with, just being able to ask it questions like "What's one supplement I should consider starting or stopping today?" (and then obviously do some follow-up research...) This is life-changing. Anyone skeptical of this has not tried it.
- LeafItAlone 2y agoWhat are examples of things that Claude has told you to do?
- burke 2y agoTroubleshooting some chronic inflammation issues (plausibly, like OP, an autoimmune issue) It's suggested a few supplements that have helped a lot, helped me figure out dosing and timing, pointed me towards taking gut inflammation more seriously as a part of what's going on (and suggesting various tests and experiments to help prove/disprove that), explained correlations in various bloodwork results, the list goes on. It's—of course—not perfectly trustworthy but a lot of things are either trivially verifiable or are low-risk experiments.
- reportgunner 2y agoHow do you know it's not barnum-forer effect ?
- lacoolj 2y ago"Planning to migrate this to run completely locally" This sounds like a really good use of AI in its current form, and is a great case study for how one-offs can be made. But until it fully runs locally, it shouldn't used by anyone to upload their PHI into (unless you anonymize beforehand). And definitely shouldn't allow use with commercial AI systems (ChatGPT, Claude, and certainly not Deepseek). I would actually be surprised if any of them are HIPAA-compliant.
- francisofascii 2y agoWhat's frustrating about our medical situation is this person now has a diagnosis for autoimmune condition, as if that's the end of the journey. But what caused or is causing the autoimmune condition? Bad genetics, a bad flu, etc.? It is still unknown. To me, this is the same as, we don't know what's wrong with you. Some speculate there is still an underlying pathogen causing it. Sometimes these conditions can go into remission for years. Maybe a certain diet is related. Simply dealing with an autoimmune condition with immunosuppressants should not be the solution.
- guilhas 2y agoI get anxiety just thinking I have to book to go to the doctors Unless you know how to act dying you'll just get the usual: * Just take some paracetamol/ibrufen and come back in a few weeks * That's anxiety * Do you drink coffee? * You just getting old And even if you get referred for something the waiting lines in the UK it can be months or years But there is no doubt a lot of people has started to complaint about strange health issues since 2020 and nothing seems being done about it Then media/fact checkers/health authorities are surprised if people are diagnosing themselves with Dr. Google. And buying the latest drug online recommended by twitter
- aantix 2y agoMyChart only allows me to download a single pdf with all tests, records and observations in a single pdf. Otherwise to download each individually, I have to go through each record, one by one, and hit download. There are way too many. I hope this supports uploading a single, all inclusive pdf, of all visits/tests/etc?
- ashw1234 2y agoHidradenitis suppurativa
- ashleighw1234 2y agoHidradenitis suppurativa
- AutistiCoder 2y agoIt'd be cool if people could upload their (anonymized) medical histories to a central database so that they could gain additional insights to help guide their care. If you included some genetic information like race or national origin, this could help people learn about the genetics behind the disorders. I have a connective tissue disorder that presents as Marfan syndrome, but I went to a geneticist at UCSF back in the 10's. He looked at Marfan's, Loeys-Dietz, Lujan-Fryns, Ehlers-Danlos, and a bunch of other disorders that would explain any part of my physical symptoms, my cardiovascular problems, and my skeletal issues - he found nothing.
- LeafItAlone 2y ago>I have a connective tissue disorder that presents as Marfan syndrome, but I went to a geneticist at UCSF back in the 10's. If you are still looking for an answer, try again. Genetic tests (in some areas) have improved significantly in the past decade and you may get an answer now.