Dozens of doctors over the years have rolled their eyes at me whenever I reported that my excruciating migraines were connected with flare ups in intestinal pain.
Many would make passive aggressive remarks like "What?... Maybe you should have a psychiatric evaluation." At one point I decided to trust them and go along with it, resulting in years of medication and dealing with withdrawal symptoms upon deciding to quit, which they claimed did not exist at all and that I was making it up.
I am happy that numerous studies like this one continue to vindicate all the things I reported to doctors over the years, although it is likely that the arrogant doctors continue to lack the introspection to realize what they did to me and many other patients, and thus admit nothing, in spite of the increasing evidence that they were flat out wrong.
Unfortunately medical doctors are not scientists. They do not collect new evidence, they just try to fit their observations (the symptoms) in the straight-jacket of the catalog of drugs or surgery they are aware of (the cure). Sometimes they choose to ignore symptoms you report, and sometimes they recommend a cure that can have terrible secondary effects without saying one word about those.
If you make the mistake of believing that they are scientists, and present your own observations of possible cause and effect, they will either ignore you or mock you. I have so many examples of my own and close relatives, from the glaringly perceptual to the more subtle and personal, and have very little respect left for their profession and insane costs.
GPs do not exist in a vacuum. They follow the advice dictated by the authorities. And the whole point of that advice is to be conservative. They aren't there to prescribe you the latest drugs or try some new cutting edge technique. They are there to present the best practice at that particular point in time. You know that whole saving lives part.
And so in your case. You are coming to see your GP and are presenting some analysis that you read off the internet and are now upset that they didn't jump up and down in amazement. Well sure. They probably get that 100x a day and 99.99% of the information is probably wrong.
> upset that they didn't jump up and down in amazement
There's that aggression again.
No, I'm upset about paying someone who mocked me and decided not to do any work because I was too pathetic for someone of his/her status.
I am an expert in my field. Many people I work with suggest things that I know to be wrong. I have NEVER mocked or acted vengeful. If they choose to continue with their ideas that I disagree with, that's their right. Is it really that hard to be respectful?
In every event that I've related in my posts, it was the doctor who was unwilling to give the most basic level of respect.
I can totally relate. I sustained a wrist injury about 10 years ago from physical trauma which requires me to wear wrist braces constantly to this day so help manage the pain, weakness, and shaking. I’ve seen more doctors than I can count about it and I’ve yet to even receive a diagnosis. They just all assume I have carpal tunnel despite numerous tests which say otherwise just because I’m a programmer. When their carpal tunnel theory doesn’t pan out they just give up yet somehow every single one of them won’t admit they don’t know what’s wrong. I’ve researched as much medical material regarding my issue as I can and take notes to present to them since I’m not educated enough in the medical domain to go beyond potential causes so I present those notes along with diagrams of the pain locations and locked muscles as well as photographs of related skin conditions. And even then when I do research and present my findings to help guide them along the way I still have to fight them to even attempt further diagnostic techniques. It’s a frustrating issue and it’s something I’ve been wracking my brain with on how to help address it in anyway I can.
I think that many MDs see physical issues as only physical, but in my experience an injury from physical trauma may have an impact on the mind as well.
I suffered chronic headaches for years after I broke my maxilla. All exams and imaging were negative. Physical therapy helped, but the problem would always come back. This is when I decided to stop visiting MDs (neurologists, psychiatrists, traumatologists). I also tried alternative therapies (i.e. acupuncture), but the effect lasted hours or days at most.
I completely relate to you about trying to find any possible solution. In my case, not finding solutions added layers of frustration and other negative emotions to the problem that didn't help.
I started looking at the psychological aspects of pain after a HN post with this article [1]. That triggered a lot of reading in psychology, and I also started practicing yoga and meditation. This path led me to many discoveries about myself, since it taught me to pay attention to my mind and body in a different way. Being able to recognize triggers was crucial to find a solution. I can say that I never have headaches now.
Feel free to shoot me an email if you're interested in more references and or other details of my experience.
Since were on a thread of medical advice with minimal scientific double blind controlled studies costing millions of dollars, check out acupuncture and get a grounding mat to sleep on. 120$ not much to lose and it’s helped many people I know. And ofc mandatory no brained eat healthy and lift weights be able to do 50 push-ups , do yoga etc. work towards doing the splits over 3 year period of practice each week
Also, depending on the country, the job may be extreme hours, low pay (GPs in particular), and huge stress coming from legal risk. While that does not excuse general assholery, after hearing a lot of stories from the field, including from my brother who's just finishing his medical degree, I'm much more sympathetic to even rude doctors. Theirs is a thankless profession.
'The average GP earns an average salary of £90,000, but doctors can earn more by linking up surgeries, making record earnings by managing tens of thousands of patients. Figures revealed more than 200 ‘Super GPs’ in the NHS earned more than £200,000 a year in 2015/16. Four were on salaries between £400,000 and £450,000 while 11 were paid between £300,000 and £350,000 a year.'
'Britain’s highest earning GP paid at least £700,000 a year'
I understand there are those for whom criticism of the NHS is sacrilege, but the current situation doesn't look much like sustainable socialised medicine to me.
I don't think that's a fair statement because the logical analysis helps so much with memorization, viz the story telling technique, and vice versa, the aptitude for logistics will not pan out without a keen memory. A lot of the required memory goes to logical connections not merely to longish Latin names under picture book illustrations.
Story telling has nothing to do with logic. It's just making stuff up. Not really something I would look for in my doctor ... even if it helps him remember.
Ridiculous comment. I'm embarrassed for you. Remember to say that to all the great doctors that are constantly saving lives, inventing new treatments, and being ridiculed by their own community when trying to introduce change.
Maybe in the emergency room, but not for a non-emergency doctor. I'm generally not looking for the person who can diagnose and treat me the fastest, I'm looking for the person who can diagnose and treat me the best. Consequently, in the emergency room I'm looking for a memorizer, but the other 97% of the time I'm looking for a researcher.
I see your point, but also you do not give health advice to other people as a profession. It's more akin to the mechanic dealing with people coming in with cars that almost all have the same issues, but then every now and then somebody reads something online about some extravagant maybe-it's-lupus kind of diagnosis, and they just roll their eyes.
That assumes the expert has actually given an answer to my questions, in which case, you'd be 100% right. Even a "we don't know why this happens yet, here's what we know about it: ..." would be more than satisfactory. Just give me something!
But when the expert has nothing to say, yet mocks my questions and even just my reporting of what is happening to me, as he very eagerly waits for me to leave so he can get paid... Then there's not much more I can do than read on the Internet.
Some throw in a veiled insult by suggesting I should be sent to a psych ward for my "panic attacks." You might say it's not an insult, but I accepted the psychiatric evaluation once - and then a whole team of psychiatrists determined after 2 weeks that I was genuinely sick with stomach issues, and called that doctor up and asked him what the hell he was doing sending me to them when I had real physiological issues.
The truth is, most patients will accept the doctor's advice if the doctor can give an answer, any answer that's genuine. "We checked out the inflammation and we don't know why it's there, we'll keep working on it." <--- GREAT. Even the most "annoying" and inquisitive patients will accept this answer. The problem occurs when the doctor thinks him/herself too good to work with the patients by giving answers like this.
I'm absolutely not trying to belittle your experience -- it sounds horrible, and it is something I have met, and that my spouse has met. She was crying after she had met a doctor that examined her, because the doctor had made fun of her, in no uncertain words implying her symptoms were fictitious.
My point was more generally about how doctors are a lot like the car mechanics of people. So when none of the usual things show up as wrong, they just assume your electronics are shot (for humans, "you're crazy") and move on.
She had legit signs of heart disease. Got told repeatedly it was diet. Went out to work and, hard core as she was, powered through a heart attack.
Damage was terminal. She lived a few more years.
Hard core again, she got tired of being zapped back to life, asked them to turn it off. I had to intervene and force it.
She lived another blissful month.
Through the whole thing, it was, "woman, you know nothing" right and left. I basically became full time patient advocate, and wish I was in that role earlier.
>I'm absolutely not trying to belittle your experience
I understand, I didn't think that you were. I agree with the point you made that maybe doctors who are trying to work might be impeded by a patient who disagrees. But I think that is a much smaller problem since the doctor can quickly be vindicated when the treatment he or she advises works, or the disagreeing patient leaves.
> Even the most "annoying" and inquisitive patients will accept this answer
but in the United States, often times they won't accept it and instead will give the physician a low survey score, which ties directly to their financial reimbursement.
True. But the situation describe further up this sub-thread wasn't a one off. This was an ongoing pattern of failed diagnosis and then mocking of the patient (i.e., the one who is ill and seeking relief) by those who promise relief and then failed him.
They should have been apologizing. Instead they stuck with a cycle of insanity. If the even fairly common imagine how many diagnoses are missed; imagine how many new and important discoveries delayed. Because of overblown egos and lack of empathy?
Chronic Lyme disease sufferers get the same response all the time. All the symptoms are dismissed as purely psychological. The lack of respect causes a lot of suffering in itself, but since it also means that patients who believe their doctors won't find ones who will actually treat them for the actual medical issues, it causes immense physical suffering. I've done a lot of reading of the core research into Lyme, and the certainty of mainstream physicians who handle patients this way is based largely on being too lazy to read that same research.
> Many people I work with suggest things that I know to be wrong. I have NEVER mocked or acted vengeful.
Then again you probably are not approached daily by dozens of humans with their meatware problems and human attitudes.
If you understand doctors to be salaried pattern recognizers and procedures applicators in various stages of burnout and adjust your expectations accordingly then you will rarely be disappointed.
Disclaimer: I'm not a doctor but I met a few as a patient and patient's family member.
Do you get it constantly every day? Do you get people telling you that you should rewrite your app in Android because they heard about it once? Do you get someone telling you that you should move from your amazon servers to the cloud? Do you get someone asking why you don't move your TV service to phones and not a tv box?
I don't think those are analogous. People make suggestions about their own health, for their own perceived benefit. That, I get every single day, 24/7 - and so does every professional in every field.
If it was THEIR app, they would ask about different hosting providers - and I would explain why or why not because it's my job.
Problem is, most of the times doctor don't help you. I solved all my health problems by myself, by debugging my body (literally). Doctors don't believe you and they fail badly because of it. Doctors are useful when you have a clearly recognized symptom and there is a known procedure to solve the problem.
I have a medical degree (but I do not practice medicine), and this is spot on. I wouldn't generalize it to the entire profession, but many doctors behave as you describe.
Generalists tend to be more humble w.r.t. not knowing everything, but specialists are often bad offenders.
The doctors you describe don't fail because they are (per you) not scientists. They fail because they presume that they know all; that there is nothing beyond the reach of tbeir expertise. With that mind set they ignore facts in order to avoid saying, "I don't know" or "I'm not sure."
Put another way, think of how many doctors are slapping open palm to forehead and thinking "I saw that 1,000 and I ignored it." I'm not sure intentional ignorance falls under "do no harm."
Medical doctors ARE scientists. They are just forced from the system (insurance companies, health ministries, etc) to classify symptoms/diseases and act appropriately.
It is a very regulated work and if you act out of the prescribed guidelines you risk your license. Sorry, no physician I know who studies for 10+ years will ever risk that to please a patient. Unfortunately or not, I leave it to others.
Doctors in that sense, and similarly lawyers, seem like the best candidates to be replaced by ML/AI.
Why aren't we on this yet? (or are we?) That would be one of the best applications of AI, with wide benefits for civilians the world over but also causing social upheaval and thus facing resistance from the humans it attempts to supplant.
In my experience, we don't need ML/AI to replace doctors. A good flowchart would do it. When your condition is on their standard list of diseases, the medical system (at least here in the UK) is a marvel of bureaucracy. Everybody works together with perfect coordination, to deliver the standard treatment at the lowest cost possible. Patient time or comfort isn't a priority, but it gets results. But as soon as you stray from their flowchart, the system is completely useless. Nobody is allowed to think for themselves, because any deviation from procedure would make the bureaucracy machine break down. As far as I can tell, the main purpose of the extensive doctor training is to raise barriers to entry and keep doctor wages up.
1. Because the health industry is about as regulated as it gets so even if ML/AI is possible there is zero chance of it being allowed to replace the advice of a doctor.
2. Because most people like seeing their doctor and talking to someone about their issues. There isn't exactly an appetite for disruption here.
When I want a medicine that requires a Dr's prescription, I can go and fill out a survey on their site. A real Dr (presumably) makes the actual prescription and my drugs show up. I am much happier for not seeing a doctor or talking to someone about my issues.
The survey I take isn't traditional ML/AI, but it's definitely AI, as it boots me out of the process if I answer some of the questions incorrectly.
Anyway, my point is: there's already disruption here, and it's awesome.
That's not awesome that you hacked the system to prescribe yourself anything you want. At best you're going to get the least efficient path to treatment. At worst you could miss a serious condition and kill yourself.
I am using the system directly as it is intended to be used, exactly as the UK government is intending it is to be used. I'm not sure what you think the hack is here. How the process works is detailed here:
> 1. Because the health industry is about as regulated as it gets so even if ML/AI is possible there is zero chance of it being allowed to replace the advice of a doctor.
i.e. the necessity of an identifiable scapegoat if things turn out badly
> 2. Because most people like seeing their doctor and talking to someone about their issues. There isn't exactly an appetite for disruption here.
Maybe a certain type of person who craves an authority figure of some sort to soothe their fears, but I'd have to see evidence of this. Most people I know hate going to the doctor, and dislike and distrust the doctor they end up seeing as often as not. Having a friendly doctor that you've been seeing most of your life, that other members of your family see, and that you get Christmas cards from is a class thing (at least in the US) that maybe 10-15% of people get.
To add to your second point: some conditions, such as mental health illnesses, require personal contact. Also, many people need to feel reassured when they're sick. An algorithm is not going to provide that, no matter how you dress it up.
> The first expert systems were created in the 1970s and then proliferated in the 1980s. Expert systems were among the first truly successful forms of artificial intelligence (AI) software.
Facebook announced that they are using ML to fix compilation errors just yesterday. They said they were contracting out companies to build ASICS for the AI. We are a long way from AI making good medical decisions.
Good doctors are aware of their ignorance. At least in the UK continued training of GPs with the latest medical practice is normal. How quickly these findings find their way in to the latest medical practice is another question.
> At least in the UK continued training of GPs with the latest medical practice is normal
At least within the NHS, my (unfortunately vast and varied) experience has been very different - GPs' knowledge varies dramatically, and many have no idea how the medications they prescribe actually work. In general, I'd say they conservative are very outdated; although to be fair, a lot of NICE guidance fits that description, and that's what they have to follow.
As well as GPs, I've found consultants across multiple disciplines to have similarly outdated ways, and occasionally a shocking lack of knowledge - even about diagnoses they make.
Maybe your experience is more on the private side? My own experience there is much smaller, but I have found private GPs and consultants to be much more up-to-date and knowledgeable.
Thankfully I haven't had too much personal experience with doctors in the UK for anything serious. I have several friends and family members who are doctors, so my experience comes from talking with them. They're probably not representative, judging from your comment.
A doctor stands before a judge due to a malpractice lawsuit. Do you think they will be interested in whatever novel research he used to justify his decisions? They're going to ask what the established best practice is and why he thought the patient was special enough to deviate from it. I seriously doubt that research will better than the articles references by the numerous guidelines.
I disagree, there are many potential non-bog-standard decisions that are not risky and certainly better than mocking you and doing literally nothing (while still getting paid).
Also: "we don't know why this happens" and a bit of two-sided discussion is satisfactory for most people.
I do agreee and have actually asked many people before if they believe doctors are scientists. The sad answer is many people assume that they are (or should be). There are also researcher-clinicians who practice medicine with patients and are actively involved in research. They are much more likely to be in touch with the latest findings in that field (rather than a standard GP /doctor). I think if you had something that the medical community cant deal with the best thing to do is to do a lit review and take a stack of papers to them although i understand it's not easy for members of the public (especially with a medical ailment) to critically review scientific research. Hopefully, the latest move by the EU to remove paywalls from academic journals means more people from the general public start reading them.
There's a catastrophic "the map is the territory" mentality in the medical world that leads to that kind of attitude.
Many (most?) doctors work as if their knowledge was exact and exhaustive, and every symptom that's not in the book is binned as psychosomatic or psychiatric, and basically blamed on the patient.
Paired with the fact that many doctors don't understand that credibly behaving as if the patient's well-being is important for the therapeutic relationship (the social part of the placebo effect, health being a mean, not an end), and you understand why BS alternative medicines are so popular.
I agree. I think it's OK to be flawed, and it's even OK not to know your limitations. But what's not acceptable is the attitude. Many of the doctors I've seen act like "pshhh, get a load of this rube!" whenever I open my mouth. They mutter something about patients not being supposed to read things on the Internet (I read because I'm desperate and nobody has managed to help me, perhaps?). Many act like "oh, you read medical articles? Great you can help yourself then, I'm out." although they won't say that outright, but essentially they stop trying the second they find out.
1. You pay to see a doctor. You weren't forced to. You chose to.
2. You tell them you read about your condition on the internet. Even though the majority of the health information on the internet is utter garbage.
3. You then get offended when they tell you to not trust what is on the internet. Although again they are 100% spot on here.
4. You are confused why they are dismissive of you. When you chose to see them, paid money for their expert advice and then wanted to dismiss it in favour of your expert advice. Except that your expert advice = 5 mins of Google and theirs = 20 years of schooling.
I really do feel really sorry for GPs to have to go through this 100x a day.
Actually you are. Doctors have a carefully protected monopoly on ordering diagnostic tests and on prescribing treatments. At least where I live, if you want diagnostic tests or drug treatments you need a prescription from a member of the cartel.
>1. You pay to see a doctor. You weren't forced to. You chose to.
Yes, that they couldn't help me is not the problem. The problem is that they behaved unprofessionally and mocked me.
>2. You tell them you read about your condition on the internet. Even though the majority of the health information on the internet is utter garbage.
>3. You then get offended when they tell you to not trust what is on the internet. Although again they are 100% spot on here.
- I am 100% OK with a doctor disagreeing with me. A few of the doctors I've met I respect immensely - even though I disagree with them - simply because they were respectful in their disagreement of what I had to say and had an adult answer for me that didn't involve mockery.
- They did not tell me not to trust what is on the Internet. They mocked me and gave up trying to treat me. They became aggressive. And they still wanted to get paid even after deciding I wasn't worthy enough for them to try!
I am an expert in my field, yet I don't dare imagine what would happen if I mocked a client who asked a "stupid" question! And even if there were no consequence, I'd never do it. Why is this somehow OK in medicine?
>4. You are confused why they are dismissive of you. When you chose to see them, paid money for their expert advice and then wanted to dismiss it in favour of your expert advice. Except that your expert advice = 5 mins of Google and theirs = 20 years of schooling.
I did not dismiss their advice. I took it, for decades. You underestimate the hubris of some of these people - they mocked me even if I took their advice, simply for reporting what happened to me.
>I really do feel really sorry for GPs to have to go through this 100x a day.
Oh those poor snowflakes, having to speak to non-expert clients without mocking them!
There exists no other industry where the expert can be so ineffective, yet at the same time aggressively mock the client outright, even deciding not to do the work because the client is not to his/her liking, while still getting paid.
Indeed; it boggles my mind that people are so forgiving of doctors. Why do we not demand the same level of respectful conduct from them as we do from others?
Is there a "Code of Conduct" in the medical community?
Incidentally, my mother was recently taken to the ICU due to an acute heart condition (she's perfectly fine now), and she was very impressed with the cardiologist there. He was very experienced, yet he told her "we are always learning new things; we have to listen to patients more" and was very attentive to her description of the symptoms and, yes, some things she read on the Internet.
> Many (most?) doctors work as if their knowledge was exact and exhaustive
No they don't. They try to give you the best advice that they can at that point in time. But I've never met a medical professional who thought they knew everything and anything.
What are you saying is really quite rude and dismissive.
I have hypercortisolemia since 25 years at least. I have been to various endocrinologists to investigate this.
It has caused numerous serious problems including blinding me in my left eye (from a cortisol related condition), osteoporosis, weakened immune system and other problems.
Every time they test me for a tumour, find no tumour and in every case I was told, "there is no problem".
Even though the high cortisol is screwing up my health. They do not know the cause so there is no problem.
Once the recipe book is exhausted they are just totally lost.
My brother had a problem that was eventually found to be due to salycilate intolerance. But in the meantime, until this was found, he was told he was neurotic, imagining it etc etc.
My mother was prescribed anti-anxiety medications when she actually had hypothyroidism due to a tumour, with classic symptoms.
Just about everyone you speak to has a story of delayed or misdiagnosis, problems being dismissed or denied because they didn't fit someone's cookbook.
The sooner we have AIs doing diagnosis the better as far as I am concerned.
What would AIs change about this? They need to be trained with existing diagnoses, so my expectation is that they will describe common cold medicine 50% more efficiently.
Many (most?) doctors work as if their knowledge was exact and exhaustive, and every symptom that's not in the book is binned as psychosomatic or psychiatric, and basically blamed on the patient.
You know this since you have a medical degree, but to inform general readers, here's what takes to become a doctor in the USA[1]:
K-12
4 years college, perhaps pre-med emphasis
4 years medical school
3 to 7 years residency
1 to 4 years fellowship (for specialization)
After all that, they probably do think they know it all. But in reality their knowledge has only scratched the surface.
Perhaps the right answer is even more specialization? Maybe that's where places like the Mayo Clinic come in? Maybe an organization like that is big enough that they can have specialists who can recognize and treat all the rare conditions that are "not in the book"?
I think the right answer is that doctors should also be required to produce an original piece of research. This will immediately make it clear how limited book knowledge is and how vast the unexplored territory is.
Ask many genuine scientists who have been doing research in a field for 30+ years and they can tell you how small the book knowledge is compared to the unexplored territory.
Doctors in Germany are heavily encouraged to produce a phd thesis during their education. The way that usually plays out: they struggle to do good science while laboring to complete a degree that essentially has them memorize an encyclopedia, and they're used by PIs and postdocs as lab monkeys or scientific errand-boys, helping to chase down someone else's obscure 2nd tier side-theory, all while earning the scorn of their academic colleagues for being pale imitations of actual scientists.
Med student here. The majority of us do research starting from day one of undergrad. It's not uncommon to graduate med school with 5+ publications. It is effective at showing how little we know, but so are the lectures we have everyday that have unknowns in them.
We're also taught by "genuine" scientist, people with PhDs, PhD/MD, and MDs on a daily basis about what we don't know.
> It is effective at showing how little we know, but so are the lectures we have everyday that have unknowns in them.
I really appreciate this being taught, and from what little you wrote, I appreciate the humility shown. Please don't ever become a "big shot" that's too good to talk openly to people who are afraid about their health.
They do produce original research during university.
And you have a warped view of what Doctors are. They are not Research Scientists. They are not there to try out cutting edge techniques and medicines. They are not there to be the world's foremost knowledge on everything medical.
They are there to give you conservative, boring advice vetted by the authorities for specific ailments. Anything more serious they recommend you to see specialists.
My wife suffered the same. She consulted a nutritionist who after hearing her symptoms suggested, with much suspicion from me, that she try the elimination diet from the Royal Prince Alfred Hospital’s allergy unit: https://www.slhd.nsw.gov.au/rpa/allergy/resources/foodintol/...
And now we know that she can’t ingest a high level of saicilates without complications. I still struggle to reason about what foods prepared in what ways meet the criteria (the book at the URL above maps it all out, I’ve just been unable to build a mental model/pattern match in the same way I can on carbs vs proteins) but I no longer have any doubt that these are the triggers.
Dude. Yes. I have ocular migraines on occasion, and when that happens, I know that I will have to go to the bathroom in an hour or so. It doesn't happen every time, but whenever it happens, that's what causes it.
Likewise, I have PVCs (extra heartbeats) whenever I have matter going through my large intestine (I think it's the transverse segment).
It's also tied to left arm pain for me, and occasional panic attacks.
It's been very obvious to me that something is 'wrong' with my Vagus nerve for around 10 years, but I started getting the symptoms a few years before that. I had every kind of non-invasive heart examination I've ever heard of, up through cardiac radiology, and my heart is absolutely fine. I pass EKGs, I pass stress tests. I just sometimes have extra beats, and they're correlated to when I need to go to the bathroom.
I've had very similar symptoms. After 15 years I've managed to reduce my symptoms by doing an elimination diet (apparently my intestines are sensitive to many kinds of food) and taking the FODMAP diet to its natural conclusion: reducing all things fermented and fermentable in order to reduce my dysbiotic intestinal bacteria. This means avoiding FOS, "soluble fiber," resistant starches, sugar alcohols...
At some point I figured out that it was all about the intestinal microbiota, so I had decent success at reducing the dysbiosis with with caprylic acid and undecylenic acid. Intestinal bacteria, even the "good" ones, sometimes produce histamine, and always produce gas. The "bad" ones produce literal toxins.
Recently I added S. Boulardii and I am now 60-70% improved as long as I maintain this admittedly difficult diet (while making sure to avoid vitamin, mineral and fat deficiencies).
My life has been hell since the age of 11. I was "drunk" and sick to my stomach for decades before the trial and error paid off. The doctors I saw kicked me while I was down. It is quite a dark realization that the industry sucks for entire classes of illness, although I do recognize its merits in treating stereotypically presenting illnesses.
How is your core strength ? Ie can you do v-ups balancing on hands? 30 pull ups ? I found digestion and stomach issues can be resolved with a good diet and physical training regime. Also try and find a teacher who can show you nauli , exercise where you churn your stomach innards , acting as internal massage and strengthens pelvic floor. Stop wasting your time with doctors — up to you to self experiment since you know yourself best
Are you me? I have the exact same symptoms, especially the left arm pain and panic attacks. Full heart checkup and nothing was found to be wrong but I always suspected it had to do with my nervous system.
Yup, that sounds like a badly wired myocardial pain circuit.
There are well known instances, like the Markus-Gunn syndrome where the mastication commands projects onto eyelid muscles. Similar bugs may occur in other circuits.
You should read about TMS by John Sarno (see divided mind). Maybe it can help you too like it helped me. Your symptoms sound a lot like it but ofcourse you need to read it and decide.
Not the original grandfather, but I'm a fellow migraineur. I read Sarno's book, and found it to be unhelpful. From what I remember, the gist of it is that "unresolved emotions" cause a great deal of physical problems in some patients. That's not a theory I'm willing to trust.
You'd probably do yourself a favour by avoiding "good guy, bad guy" thinking. In their position, wouldn't you act the same way? Doctors have a finite amount of energy and time to spend on their job. What is a resource efficient way to maximize the utility of the sum of all patients? Is it, (a) invest an exorbitant amount of time on one patient whose symptoms isn't supported by very well funded (much more highly funded and rigorous than what you, the doctor, could ever invest on your own) research (which is probably a true positive only a small percentage of the time), at the expense of other patients, or (b) trust the current scientific consensus (at the small but occasional risk of being wrong)?
It's not "arrogance", and you shouldn't think of what's happening now as "vindication". It's just cost efficiency at the (unavoidable) risk of occasionally being wrong.
>In their position, wouldn't you act the same way? Doctors have a finite amount of energy and time to spend on their job.
Almost everything I hear from clients I consider to be wrong. And I politely explain to them why that is, I get into their assumptions and reasons for thinking what they do, and try to convince them of why it is not the case. I never mock, I never suggest that they are idiots, and were I to start shirking if they disagreed with me, I wouldn't then make them pay while I continued to shirk.
I'm sorry but I don't see how the two studies referenced in the article "vindicate" your complaints.
The study that is the main subject of the article found that a) the enteroendocrine cells of mice send signals to vagal neurons and b) in a petri dish, enteroendocrine cells form connections with vagal neurons.
Neither of the two points seem to be connected with migraines, specifically, and they remain the results of one study, in vitro and in an animal model.
It seems to me it's too early to feel vindicated about anything.
To clarify, this is from the original Science article linked to by the article at the top of this post:
Thus, enteroendocrine cells are chemosensory cells that activate vagal sensory neurons via release of glutamate (see the figure). Kaelberer et al. hypothesize that synaptic transmission confers precise spatial and temporal information about gut contents. Such sensory feedback could allow neural control of rapid processes that modulate gut physiology, such as muscle contraction, whereas neuropeptides such as CCK are responsible for long-lasting behavioral outputs of gut stimulation, such as satiety (5, 6). A remaining issue is what behaviors or physiological processes rely on subsecond neural signaling from the gut.
It seems those gut-neurons (or whatever they are) serve to inform the brain of the gut's contents.
There is nothing there (or in the rest of that article) to suggest a connection between the gut and migraines.
No single study in isolation would vindicate me. I mentioned above that numerous studies over a span of years continue to paint a picture that increasingly vindicates me, in the sense that what I reported to some arrogant doctors was not as laughable as they pretended it was.
Out of curiousity, what are some examples of other studies, that "vindicate" you?
For the record, I find it dangerous to feel "vindicated" about any personal dispute on the basis of any number of articles in the scientific press, especially so if they're in a field that you are not specialising in. It's very easy for your feelings to get in the way and push you towards all sorts of misunderstandings of what is claimed in those publications.
I don't have them handy. It's ok if you don't believe me.
It's certainly dangerous with regard to cognitive bias, but I have backing from an excellent doctor who has noted my results experimentally, so I am convinced of what I'm saying.
edit: I would also stress that a lot of things that many of my former doctors were skeptical about were mere symptom reports. I think I would know when my intestines hurt, yet some doctors acted like this was malingering, or a "panic attack" when really I have food allergies (but they wouldn't know that since they gave up from the get go).
>Who said anything about not believing you (or believing you)? Why jump to conclusions about my mind-state, like that?
>Can't I just be curious to see what it is you mean, and perhaps learn something I don't know?
Fair enough! I think you're right to ask for sources. What I'm saying there is that I have nothing on hand that would convince you of my claim, so whether you believe me or not is left to you, and if you don't, I will concede that discussion.
Since I now know you're only asking out of interest, I guess that point is moot now.
Have you seen any functional medicine doctors? Not "naturopaths" or chiropractors, but an actual functional medicine MD? (I make the distinction because many will scoff at naturopaths, and also because that world is full of many pretenders who give functional medicine a bad name.)
Gut health and the mind<->gut connection have been well accepted facts in functional medicine for many years. First anecdotally, and now with more and more scientifically backed research.
I feel your pain regarding conventional doctors not understanding, or not caring to understand that health issues can be solved with tools other than their prescription pad or an invasive surgery. That paradigm is slowly changing; ie. the reluctant mainstream acceptance of things like probiotics for gut health. I wonder what the more critically minded audience of HN thinks of functional medicine?
If you haven't looked up any functional doctors, a good place to start is Dr. Mark Hyman, who is the director of functional medicine at the Cleveland Clinic. At first glance, his books and persona can seem a little "new agey" or bullshit, but if you listen to him on more technical health podcasts, you can see that he is a very intelligent person rooted in scientific research and trial and error in his medicinal practice.
When you were at a university (without grade inflation), how big was the portion of students you felt truly mastered each subject? 5%? Would you expect something different with MDs? Your doctors are statistically most likely average or below average, so is their advice. They likely graduated by memorizing a snapshot of medical knowledge that was current when they graduated, with updates coming in with far lower weight. If you want great advice, get two persons - one a recent smart graduate, the other experienced one with great stats. I hope at some point many of those murky decisions could be automated away with machine learning soon.
I am sorry, but probably the doctors you were seeing were simply incompetent. Auras in migraine can be almost anything, even intestinal pain (or diarrhea in some cases).
Also, the paper simply describes a new observation in a very well-known fact. Nonetheless, that the vagus nerve IS connected with the gut is known probably known since Vesalius' time. The paper does not describe or explain your intestinal pain, neither gives you any kind of "I told you so" right against your physicians.
Arrogant physicians is one thing, incompetent is another.
I've literally seen more than 50 doctors for this over the years. I would estimate about 4 or 5 were great people who actually made a real effort to help me.
The rest were both arrogant and incompetent, and some have even caused me severe iatrogenic harm.
anecdotal, but once, after a 2-week period of cold and antibiotics, followed by 1-week worth constipation and and painful release of bowels, i experienced a very vivid depression (anxiety, fear, it's a bad, persistent feeling.
NOTHING i did managed to shake it off). I'm a very introspective person in general, and while my brain was telling me it's because 'i'm worthless', i managed to convince myself that something was happening in my digestive system. My first guess was some kind of a laceration (due to constipation) in the colon. I mean, why not? When you are happy, you feel butterflies in your stomach, right? But at that time, everything that 'usually' bring butterflies to my stomach, ended up doing the opposite. That's how i thought about it then. I was also aware we have a lot of neurons in our gut. Note, that, while i made this connection, it was not at all obvious it had anything to do with the gut at all, it all started as a hypothesis.
Anyway, I swallowed paracetamol, which is used to treat fever and pain. And the difference was clear as day, the bad feeling stopped. At least for 2 hours.
But what happened next cleared me of any doubt that the source is somewhere in my gut. I was waiting in a reclining chair in my car, feeling bad because the effect of paracetamol had subsided. That's when i discovered that 'whether i feel bad or not depends entirely on the angle of the reclining chair i was on'. I tested it, if i raised it to such degree, i will start feeling bad, and if i lower it to such degree, i will stop feeling bad. It was so weird to me.
Anyway the bad feeling persisted for like a week after, then i was back to my usual self. However, had i internalized it, I'm sure it would have a long, and destructive, tail.
I first heard of the stomach/brain connection to migraines from my neurologist. She described it as a lesser understood area of neurology.
Having said that, I know all too well how unhelpful the wrong doctors can be for an issue. When I had my first round of cluster migraines I was treated as having a very bad sinus infection, for months. I’m lucky I made it through that semester in college.
This is typical for taxpayer-funded healthcare, where there is no accountability and doctors know they can do almost whatever they want and there is nothing that you can do. It really hurts to think how much money in taxes you pay and what you get in exchange. I wish there was at least a system where you could remove such doctors from practising.
On the positive side, my gut sends a sos anytime I mess up my diet, so over time my food habits have improved just by avoiding certain items.
Food preservatives (in packaged foods) affect me much more than people around me. Missing breakfast or anything that gives me acidity triggers it. I always have had a low tolerance for alcohol.
It has been known for decades but largely ignored by the general population, that doctors themselves are one of the leading causes of death in the united states.
The truth is that medicine is a very conservative profession, as it probably should be, we don't want to be guinea pigs of new techniques ourselves.
But many doctors are just not up to date with the latest research and just keep medicating you using the same stuff they learned in university 20 years ago, which was itself already out of date by then by easily 10 years.
Not all doctors are like that, but many. You should do your own research on the internet for those types of ailments, confirm that the sources are trustworthy and adapt your diet, try different things.
Try to find a specialist on those issues, it could be an auto-immune disease. But don't overly trust some random doctor telling you that you don't have anything when you have those types of symptoms.
Problem is most people aren't reliable sources of information due to confirmation bias. No doctor should dismiss someone and act like they know everything, but they may not be able act on subjective information.
I have definitely also noticed strange gut reactions as I endure the flashing-lights beginning stage of my migraines. I always attributed it to “nervousness/butterflies”.
I guess the best way is to force an analytical approach on your treatment. Ask your doctor a list of all possible causes of your symptoms. Ask them to assign probabilities to each of them, and a score of 1-10 that indicates difficulty of treatment, risk and cost. Then sort the list with your doctor, and work down the list (this last part will take time of course).
>I guess the best way is to force an analytical approach on your treatment. Ask your doctor a list of all possible causes of your symptoms. Ask them to assign probabilities to each of them, and a score of 1-10 that indicates difficulty of treatment, risk and cost. Then sort the list with your doctor, and work down the list (this last part will take time of course).
This is like the ultimate way to get mocked by the kinds of doctors I described.
One problem is that your doctor has no incentive to treat rare diseases. If they can cure 99.9% of people, then they are king. The .1% of people with a rare disease will require extensive testing that costs a lot of time and money, and will only make your doc look bad on various performance evaluation metrics.
It's not just rare diseases. Anything that cannot easily be diagnosed. They end up treating the symptoms because finding what the cause is is nigh impossible for a real-world doctor with a full waiting room and a limited budget.
If someone thinks I'm just rambling, I took medical courses worth well over a thousand lecture hours (incl. biology, bio.chem and other stuff needed as a basis), plus I myself was one such patient and I spent years on it - together with a specialist I finally found, a researcher at a university clinic.
Anything that has an underlying cause that is not itself an obvious disease is part of that category. For example, "simple stuff" like psoriasis (mine went away after treating the cause), acid reflux (usually no concrete cause is found, only guesses - weight, food, only in rare cases where there is an anatomical problem as the immediately visible cause is one determined), lots of other "fuzzy" things that are not (immediately) disabling conditions.
I'm an example. I was told by a professor of gastroenterology that I would have to take PPIs forever. His diagnosis was completely in line with all recommendations given my problems - but it felt completely wrong on all levels. I did my own research and found the true cause, looked for a specialist, got it confirmed, treated - and I proved that professor and a few other doctors wrong many times over. I have no hard feelings at all though, I'd still go back to that professor if I needed a professional opinion. I just interpret it very different than before though and don't take as the ultimate answer. I'm actually somewhat satisfied with modern medicine despite the fact that it let me down big time had I not spent an extraordinary amount of effort myself - after all, when you do invest that effort, never in the history of mankind have their been so many options.
You say that you had to spend a great amount of effort yourself.
Does that mean you somehow got access to various diagnostic tests (blood tests, CT/MRI scans, etc.)?
I'm ok with modern medicine as far as treatment goes. However, the fact that diagnostics are not commercially available is somewhat maddening. I understand that it's not for everyone, but that doesn't change my point.
> Does that mean you somehow got access to various diagnostic tests (blood tests, CT/MRI scans, etc.)?
Since my problem was chemical and I didn't have a concrete region but non-localized issues I didn't need the extremes of medical imaging (CT/MRI). Quite a bit of ultrasound was done, abdomen but also of the thyroid. An additional functional re-check of an enlarged thyroid with a nodule previously examined two decades prior using a radioactive tracer was not strictly necessary, but oh well. By the way, the nodule in the thyroid as well as the enlargement - both stable for decades - completely evaporated and disappeared, respectively, to the great amazement of the endocrinologist, once I treated the underlying cause of all my problems. Which was long-term- low-dose mercury poisoning. Lots of blood and urine tests, especially after I determined that it must be heavy metal poisoning, to check progress of chelation therapy after the initial confirmation.
> the fact that diagnostics are not commercially available
I had no issues getting any test or imaging that seemed reasonable, immediately. Country: Germany.
After receiving PPIs I had acid reflux like never before in my life, and my abdomen was incredibly bloated all the time too. The professor gastroenterologist I was seeing put it all down to "psyche" (he was very nice about it, and I think I said it, I would still go there, just be more critical). After some hesitation and a lot of suffering - as soon as I fell asleep I had reflux - and actually coming back to the diagnosis for a second time because I did not believe it myself, I self-diagnosed the main issue at that point as a huge outbreak of candida. The problem was that it was pretty much only "non-standard" and "volunteer" websites that had the information so I did not trust it. Anyway, it was confirmed fist by the immediate huge success of using an over-the-counter antifungal followed by seeing a general practitioner who confirmed it right away (one look into my mouth was enough). Later I was even given a systemic antifungal (fluconazole based), again with great success.
The problem: Everything I read indicated that a fungal infection never is a cause it is itself a symptom (I even considered if I had AIDS), and only the extreme edge of my issues had been taken care of anyway. After reading up on possible causes the only thing that was left - and I had to go with Sherlock Holmes, after you eliminate everything what remains, however implausible, must be the truth - was mercury. I had tests of blood/urine (kind of the same, since urine is a mirror of what's in the serum) as well as hair and had clearly elevated levels of mercury. Looked for and found a specialist for environmental medicine, researcher at a university clinic, started chelation treatment - overwhelming success with a few medical miracles along the way, like those disappearing thyroid nodule and enlargement after decades of existence.
Yes it was due to dental amalgam. It turned out my jaw bone was broken too: When a doctor tried to make an injection into buccal mucosa he ended up deep inside my jaw bone (the doctor had applied next to no pressure, it was just meant to go into the mucosa after all) in several places. All of those places were the roots of teeth that had had amalgam fillings, what a coincidence /s After a year of DMPS (chelator) injected into those places the bone healed itself, the needle stopped going into the bone. Note: X-ray had shown nothing at all. I learned that in order to show bone issues in x-ray you must have already lost most of it.
I have not looked at [1] because quite honestly, I don't care. I fixed my problem, and I've become quite a cynic. It is completely useless to start any discussion. Especially about health issues. People are extremely emotional, and filter are at a maximum. That includes myself! For decades I called myself "completely healthy", I completely ignored lots and lots of ever increasing issues and interpreted them as "normal part of (my) life". Only when ALL of them went away during chelation I found out that no, warts on the feet, psoriasis, RSI, dry eyes, frequent colds, "winter depression", irritability, and lots and lots of small and not so small issues are NOT normal at all. I went to an orthodontist once because since teenagehood I had had crooked teeth. So I even knew I had an issue. And yet, when the doctor told me my mouth was "a major construction site" I was so shocked I never went back there (eventually I went to others after getting over the shock, got it all fixed over years, incl. jaw surgery, perfect teeth now, what a huge difference). This was not even a severe issue and completely fixable, and yet my brain was in complete denial! I had ignored it for decades, and when somebody told me, even though I knew, I went into active denial mode. So if I learned one thing it is this: You cannot tell people anything about health - not if they feel the topic impacts them (if they accepted the message).
I have friends with amalgam fillings, and I see issues that I had and that are now gone. I say nothing at all. I did tell them what my problem was once, that's enough. It would be useless and 100% unwelcome. The brain power to ignore health issues with great force is enormous! How many stories are there of people ignoring obvious bad signs, like blood in the stool, or even just the many problems of being obese, for a long time until it is too late? And who am I to judge? Actually combating the problem takes a huge effort of money and time. You can't just take a few doses of chelator and that's it. Your body has to do 99% of the work, and for that to work you must not have stress, you must be able to lie down when you want to, do nothing for weeks during some phases. If I was a doctor I would NOT offer those treatments or deal with this problem. The world is not ready for heavy metal poisoning diagnosis, almost nobody takes it seriously. Even the lead issue (and lead is a lot less worse than mercury) for which we actually have a public understanding and accepting is only quite abstract, which is why there still are so many places with lead pipes and lead paint, or lead in aviation fuel (I'm a private pilot too...). People don't really deeply understand what a problem it is, the mostly observational study statistics based knowledge does not get to an emotional layer, it remains too abstract.
I took well over a thousand hours of medical lectures and courses over the years, incl. "side subjects" such as chemistry (all kinds of courses), biology, statistics (lots and lots), so I think I have a bit of insight now. However, when I read papers such as what you linked it feels to me like aliens writing about human love. It feels to me like there is no real connection between the problem and what is written. I completely understand how those writing such papers get there, as I said, I studied it quite a bit. I understand that it's the best option we have. But all I can say is that it just doesn't feel right to me, that there is a huge gap between the papers and reality.
For example: The problem with knowledge gained from observational studies in general is is that if you have an individual person it is impossible to prove anything based on that knowledge. You only have knowledge applicable to the population. So skeptics will point at everyone who says they have that problem and ask for proof - which is impossible to show. It's like a card trick: If you look at every person individually there is no problem, only if you look at all of them together will you see it. But action for a sick person always is on the individual level.
EDIT:
Oh and by the way, many of the studies that go into such papers about amalgam are silly to me - now. I would have thought them to be perfectly reasonable ten years ago though, which shows it's not that anyone is "stupid", it's just that you don't think of everything that probably needs thinking of.
For example, quite a number of such studies that look at amalgam look at patients after amalgam removal compared to patients that keep it. The period is about a year most of the time, and nothing else is done (no chelation therapy). To me, with what I know from myself now and rethinking it too, this is silly. Why would you expect anyone to feel better after amalgam removal? At most you should expect that they don't feel worse. After all, they still have all the mercury stored that was deposited over the decades. There have been studies on industrial mercury accident survivors that showed that they retained large deposits even until after death much later, showing that it's a myth that the body gets rid of it all on its own (my experience: it does so, but only after the process has been started and helped using lots of chelators; also, in the literature there are many chronic mercury patients where the first few times after chelation there is very little mercury in urine, but after a few times it suddenly jumps to far higher numbers. Happened to me too - it started high, went down quickly linearly, then suddenly jumped up significantly).
A doctor wrote, and I use my own words but I think I remain true to the original, that you can compare heavy metal poisoning with throwing a spanner into a machine. Just because you stop (throwing in new ones) doesn't mean it's okay now, and you can expect it to get worse over time even though exposure stops. That's because - as the doctor wrote - at least some of the mercury isn't "safely tucked away" and inactive, it keeps messing up cell machinery because it remains in the cycle.
That means that IMO most of the studies I did read made assumptions that I think are inaccurate to begin with.
Of course, I don't see any way to get much better any time soon. Not long ago I read the paper about the problems of measuring zinc levels in a human body. It's amazingly complex and inaccurate, and that is a very basic element to be measured! The only way to measure heavy metal body burden is to cut pieces off of various organs and send them to the lab. There is no non-invasive test that can give you final undisputable results. So, given the "unprovability" on an individual basis, it goes back to what I wrote above about medical knowledge from mostly observational studies.
You took an analytical approach to finding a cure, and eliminated causes. I think this is something that is missing in medicine, with (for instance) doctors prescribing SSRIs and counseling for every depressed patients that enters their office. It's great that you created your own personalized approach and got help with it, but it still makes me feel sad for the people who are less lucky, and for the state of medicine in general.
Sorry you have had this experience.
I really don't know how a doctor manages to be arrogant. I've been doing medicine for 18 years, and I am surprised and humbled intellectually every day. This is of course what makes the job so interesting and rewarding. But it has certainly never inspired the sense that I know anywhere near 'everything', or that my accumulated knowledge and experience were somehow more important than the individual experience of the patient.
Doctors are not assholes. To some, this will be a controversial statement. But they do fail, and they do make mistakes. The biggest mistake a doctor can make is not taking responsibility for the patient. This is fundamentally what doctors do. They might convince themselves that they actually do something else, but I am absolutely certain that taking responsibility for a patient is the core and inescapable act of medicine. And almost always, this is what a patient wants, more than anything else (this is way an algorithm will never replace doctors, but that is a another discussion).
All my errors and failures stem from ignoring or passing up this responsibility. Of course there are reasons why this occurred - I was too busy, too tired, didn't think I could make any difference, it was someone else's job etc. There are a litany of rationalisations. But at the end of the day, taking responsibility creates the clarity, freedom and trust that is necessary to have a useful therapeutic relationship. The point is that even if you can't do anything to help the patient, even if their condition is totally untreatable and their suffering immense (as is all too often the case), you will always still help them in some way if you take responsibility.
I don't know all the details of what happened to you obviously, but in the framework above, the problem you have is finding a doctor who will take responsibility for your condition. Too often, the doctor is 'set up to fail' in this regard, because they have appointments every 10 minutes, have seen 20 people already today, are tired, hungry, dehydrated, pissed off, burnt out, depressed, sleep deprived etc etc. How can they take responsibility for anything in these impoverished conditions? But this is their fault - as a professional, they must find a way to do the needful, however difficult.
I am tapping all this out because I think that doctors and patients don't understand this basic idea about taking responsibility. Some doctors seem to think it is their job to do 15 colonoscopies a day, or to seem clever, or to impress the secretarial staff, or to look eminent in a white coat on the ward round, or any number of peripheral and totally irrelevant things. Actually, for serious conditions, I think a patient should ask their doctor to take responsibility explicitly. "I have this problem, and I am looking for someone to take responsibility for treating it." If a doctor says "yes" in response to this question, even if they seem a bit unsure, you have probably found someone that can help you. If they look baffled, it's time to move on, don't waste your time. You will only end up frustrated and angry.
Many would make passive aggressive remarks like "What?... Maybe you should have a psychiatric evaluation." At one point I decided to trust them and go along with it, resulting in years of medication and dealing with withdrawal symptoms upon deciding to quit, which they claimed did not exist at all and that I was making it up.
I am happy that numerous studies like this one continue to vindicate all the things I reported to doctors over the years, although it is likely that the arrogant doctors continue to lack the introspection to realize what they did to me and many other patients, and thus admit nothing, in spite of the increasing evidence that they were flat out wrong.