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.
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.
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.
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 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 . 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.
Do you engage in regular exercise that stretches and strengthens your hands, wrists, and forearms?
That seems like a nice outline of the symptoms, but can we get a diagnosis?
'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.
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.
Not directly but you relay on the system that can diagnose and treat you cheapest and, since manhours is always most expensive item, fastest.
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.
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 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.
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.
This is a big problem.
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?
I think that varies from country to country.
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?
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.
I have experienced the same, and it is ugly.
There are many constructive ways to have discussions like that. Mocking, suggesting, psych are not among them.
But that's terrible honestly.
Generalists tend to be more humble w.r.t. not knowing everything, but specialists are often bad offenders.
- have a theory, that is a preliminary diagnosis.
- look for and listen for evidence. Speak with the patient. Run some tests.
- do the symptoms support the diagnosis?
-- yes? Ok. Prescribe.
-- no? Repeat step 2. Keep looking. Keep listening.
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."
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.
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.
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.
And you can see how they're regulated in the UK here:
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.
Apple has already begun doing it in baby-steps, doing it well so far and is lauded for it.
Applications include diagnosis and some systems are listed: CADUCEUS, MYCIN, PUFF, Mistral, Eydenet, Kaleidos.
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.
Any non-standard decision is risky.
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.
at least average/bad doctors aren't
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.
Patient knowledge may be accepted for diseases that are rare but well know, but for stuff in foreign territory you'll find that kind of attitude.
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.
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?
There are doctors out there who get this. They are hard to find.
So much aggression...
2. Poster remarks "Poor expert"
3. I make a retaliatory post highlighting how ludicrous it is to say that the expert who mocked the client is also the victim somehow
Your "OMG look who's aggressive" deliberately ignores pretty much all the events being discussed.
Given that the doctor can't know my symptom history as well as I do...
Or as well as Google from tracking my previous symptom searches.
What's the chance Google search algorithms point me in a more productive direction than an MD?
Anecdata: Doctors prescribed me antidepressants and muscle relaxers. The internet introduced me to healthy eating, keto, stretching, and mindfulness.
I'm happy to report that I stayed away from the former. And the latter has been unbelievably life changing, for the better.
Edit: add two unnecessary surgeries, kidney stone removal after passing the stone and septoplasty for nasal inflammation, to the doctor cons list.
That being said, outright scolding a patient who did some research without inquiring on what they read is not acceptable.
Their expertise is not exhaustive. The patient may have something to teach them, especially for cases that don't fit the mold.
That's what a good doctor should be like.
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.
Overworked humans suck at being humane.
The golden hammer mentality is widespread, and your disease better has to be a nail.
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:
4 years college, perhaps pre-med emphasis
4 years medical school
3 to 7 years residency
1 to 4 years fellowship (for specialization)
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"?
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.
We're also taught by "genuine" scientist, people with PhDs, PhD/MD, and MDs on a daily basis about what we don't know.
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.
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.
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.
Hopefully the same process helps you out too.
A lot of people think they cannot tolerate "gluten" or some other thing when, often but not always, it is the additives in foods that are the problem.
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.
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.
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.
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.
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.
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.
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.
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.
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?
>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.
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.
Read about Apana vayu mudra. Do it for 10 minutes when you have a gas trouble and see what happens. Hint: you can’t stop burping and farting.
Some random site I found online which has a hand picture of how to do the
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.
The rest were both arrogant and incompetent, and some have even caused me severe iatrogenic harm.
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.
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.
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.
We are talking about a couple of millions of unnecessary deaths in a 16 year span. Here is a source, that references studies - https://nutritionfacts.org/2017/09/21/how-doctors-responded-...
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.
Didn’t Machiavelli say the best way to assassinate someone was to assign them a private physician? It’s been going on ever since there were doctors.
This is like the ultimate way to get mocked by the kinds of doctors I described.
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.
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.
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.
What was the most decisive test that helped you come to the conclusion that it was mercury poisoning?
Also, curious: was this poisoning caused by dental amalgam? And have you read this, , and would you agree with the conclusions?
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  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.
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.
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.