20 ms·

I've recently had to deal with the medical profession a lot more than in the past and I'm finding this sort of thing everywhere. OTC medicines that by current s

I've recently had to deal with the medical profession a lot more than in the past and I'm finding this sort of thing everywhere. OTC medicines that by current standards would not be made OTC, surgeries that are extremely common but have never had quality randomized trials, official sounding diagnoses that on inspection are actually defined as "we have no idea", lack of consensus about how to treat some of the most common conditions in the human population (e.g. back pain), medical device approvals abusing the shortcut of being "substantially similar" to an existing device to evade regulatory scrutiny, the complete lack of enforcement of what goes in supplements... I feel like my entire understanding of the medical system in the US was a lie. We're constantly touting that we have the most advanced technology but if you have a complex condition you are likely to fall prey to multiple kinds of grift.

petschge 5y ago
And now I am reminded of https://dx.doi.org/10.1136%2Fbmj.327.7429.1459 https://dx.doi.org/10.1136%2Fbmj.327.7429.1459 and the fact that there is no randomised controlled trials that show the effectiveness of parachutes either.
- thedailymail 5y ago
  Au contraire! https://www.bmj.com/content/363/bmj.k5094 https://www.bmj.com/content/363/bmj.k5094
  - petschge 5y ago
    Note that this is the study that prompted the study I linked to. But yes, worth a read too.
- astrange 5y ago
  As of 2020 there wasn't an RCT for surgical masks being helpful in surgery.
travisathougies 5y ago
You seem to be under the impression that there is some 'advanced technology' out there that will magically solve your problems that the US fails to have. In my experience, many people have a quasi-religious belief in the capability of modern medicine to perform what would otherwise be called a miracle. This belief is typically held without any evidence whatsoever. In reality, there are a plethora of conditions, some very common and serious, that medicine simply has no idea how to treat. The set of completely treatable / curable conditions is much much much smaller than the set of all possible diseases, yet people act as if it's the opposite. This is why things like 'evidence based' medicine is so dangerous -- we don't have evidence for the vast majority of impactful conditions, simply ignoring patients with these conditions is not a workable solution.
- jl6 5y ago
  I feel proponents of evidence based medicine are perfectly aware of the enormity of the problem, and are working hard to improve the situation.
  - twofornone 5y ago
    But the point is that laymen are not, and they put too much faith, on average, into our medical institutions. Our understanding of the human body has advanced enormously with the advent of modern science, but it is still far less complete than most people probably realize when they interact with doctors. Not to mention systemic issues (common to any technical discipline) where medical professionals have to effectively practice with a degree of faith because no one has time to actually review the literature underpinning any given consensus, and that occasionally breeds long lived orthodoxies which do more harm than good...
    - VerminOctopus1 5y ago
      Who exactly should the laymen put their faith into if not medical institutions? That, and the scientific process, are all we’ve got.
caymanjim 5y ago
> OTC medicines that by current standards would not be made OTC Acetaminophen would almost certainly be in this category, if it could even get FDA approval at all. The effective dose is dangerously close to a toxic dose that causes liver damage, and not comfortably-far from the LD50. The only reasons acetaminophen is OTC is that it's been informally grandfathered in, makes an absolute fortune for pharmaceutical companies, and doesn't get you high.
- genghisjahn 5y ago
  How is this "dangerously close to toxic"? Extra strength is 500mg. Adults should not take more than 3000mg in a day. Taking 7000 more more can lead to liver problems. https://medlineplus.gov/ency/article/002598.htm https://medlineplus.gov/ency/article/002598.htm Common dosage forms and strengths: Suppository: 120 mg, 125 mg, 325 mg, 650 mg Chewable tablets: 80 mg Junior tablets: 160 mg Regular strength: 325 mg Extra strength: 500 mg Liquid: 160 mg/teaspoon (5 milliliters) Drops: 100 mg/mL, 120 mg/2.5 mL Adults should not take more than 3,000 mg of single-ingredient acetaminophen a day. You should take less if you are over 65 years old. Taking more, especially 7,000 mg or more, can lead to a severe overdose problems. If you have liver or kidney disease, you should discuss the use of this drug with your health care provider.
  - thedailymail 5y ago
    My understanding is that acetaminophen toxicity has been a problem particularly for children, because 1) the toxic dose is lower, 2) many common OTC products for children include some amount of acetaminophen among their active ingredients and 3) parents may give their children multiple such products (one for runny nose, one for fever reduction, one for nighttime relief, etc.) over the course of a day and end up exceeding the safe dose, leading to liver toxicity. That was the situation a few years ago at least.
    - freedomben 5y ago
      acetaminophen is often put in medications because it's toxic. It's there to dissuade people from *gasp* taking too much and possibly experiencing some positive feelings or enjoyment that offends the sensibilities of decision makers. Better that we destroy a few people's livers than that those people get a buzz. (to be clear, this last sentence is not my view. I'm mocking that view)
lkxijlewlf 5y ago
> in the US was a lie. We're constantly touting that we have the most advanced technology but if you have a complex condition you are likely to fall prey to multiple kinds of grift. I feel like so much of what goes on day to day is one grift or another.
perlgeek 5y ago
My impression of the medical system (both here in Germany, and through reports from the US) is that it's very much like everything else: much is crap, much is mediocre, some good, and a very small, excellent sliver. This goes for doctors, drugs, surgeries, devices. If you want good results, you really have to take matters into your own hands, search for possible treatments yourself, evaluate several doctors until you find a competent one, research possible adverse side effects yourself etc. Example: somebody in my family had two different surgeries by non-standard methods that gave her significant advantages over the regular methods; one of them offered (to our knowledge) in only one hospital in Germany, the other in three. In both cases her regular doctors didn't know about these methods, and were really surprised to hear about them afterwards. In both cases, she learned about these methods through some non-medical channel (a relative read about it in a newspaper, stuff like that). If you just go to the next specialist for the field you need, chances are you don't get the optimal treatment, and the rarer the disease, the less like you get a good treatment.
- rscho 5y ago
  Robot?
- ipaddr 5y ago
  This is the reason why the US system is better than Canada. In Canada you can't shop around and need referrals for specialists.
  - fpgaminer 5y ago
    IIUC the vast majority of Americans don't have that privilege either and need referrals. You have to be on more expensive health plans to be able to pick your specialist. (That's been my past experience with HMOs). I finally got on a PPO recently and it was a bizarre but pleasant experience to just ... refer myself to a specialist :)
  - paxys 5y ago
    You can find the best medical care in the world in the US if you have the means to pay for it. I don't think people will agree though that it is the indicator for the best healthcare system.
jimbob45 5y ago
>the complete lack of enforcement of what goes in supplements I agree with everything you said except for this. If resources are finite to approve and regulate drugs, 3rd-party supplements are the first thing I want tossed before any other more critical medication.
- throwaway684936 5y ago
  Mislabeled supplements can be very dangerous and some people require supplements due to diet choice or health issues such as pernicious anemia.
kingkawn 5y ago
Welcome to medicine!
tpoacher 5y ago
It's not just the US, it's pretty much the same everywhere. Ex-doc here.
m-p-3 5y ago
> official sounding diagnoses that on inspection are actually defined as "we have no idea" I suffer from IBS, and it's basically a diagnosis of exclusion of everything else. > lack of consensus about how to treat some of the most common conditions in the human population (e.g. back pain) Back pain isn't a condition, it's a symptom. And with the amount of conditions and diseases that have this symptom in their list, it's not surprising there isn't a "one-size-fits-all" remedy or cure to it.
- FireBeyond 5y ago
  Before my gout became more obviously gout (I had elevated uric acid, but there was often little to no crystallization), one of my diagnoses was "seronegative arthritis" - "It looks like you have arthritis, but you have neither RF or CCP in your blood, so... huh."
lowbloodsugar 5y ago
In the US medicine is a business. Their job is not to make you better. Their job is to get as much money as possible out of you.
emmelaich 5y ago
I had a condition recently, now resolved. During that time I had many consultations with specialists and did quite a bit of research myself. It's astonishing. 80pc or more of shelf products in a pharmacy will do nothing and many will make things worse.
Madmallard 5y ago
I’m feeling this way too hard. I have a condition where any food I consistently eat I become sensitized to and begin developing severe reactions that are alike anaphylaxis in nearly every way but not quite as severe. I have been hospitalized several times now with starvation issues. Yeah immune suppressants sorta worked but you can’t exactly stop a full on immune response so it just bought a little bir of time. (1) mast cell testing - negative (2) ige testing - mostly negative but i also avoid things i react to (3) endoscopy - mostly negative but some inflammation (4) psychological - medications didnt do anything (5) Non-allopathic stool testing from Genova Diagnostcs? astronomically high secretory IgA levels, high zonulin levels, disturbed gut flora populations and altered stool enzyme levels. -> point this out to doctors “sorry cant help ya there. _that’s unvalidated_” Me - well fucking figure out something to try then!!!! Dead end. I am so sick of evidence based medicine.
- LorenPechtel 5y ago
  At least I don't go down the anaphylaxis route. Unless the picture changes I won't have starvation issues, malnutrition is definitely an issue. I'm sure it's going to end up having to go with immune suppression (and I have every reason to suspect that's only going to be a temporary solution) but so far I've been able to avoid that. Never tried the psych stuff. One doctor suggested it but it felt very much like they were pretending it had off-label relevance--but he ignored my saying capsules, not tablets. Sorry, you're not thinking about it and I'm not taking psych stuff without the doctors considering it carefully. And tablets that can't be cold-turkeied are a hard no for me. (I'm going to go sensitive to the tablet binder at some point. If I go sensitive to a capsule I can at least break it open.) Nobody's suggested the stool testing, is that something new? I'm pretty sure gut flora play a role but I don't have details. (E-mail in my profile.)
  - Madmallard 5y ago
    GDX stool testing was something recommended by an integrative dual resident at ucsd for me. I think if you disturb the flora and lining too badly the normal tolerance mechanism with Tregs breaks down. That’s my theory anyway.
zoba 5y ago
Hopefully you never get something unrecognized by current medical knowledge. You visit progressively more esteemed experts: local, regional, national, global. Then you get to the top, and (in my experience) that’s it. I thought for sure there was a “ok now we hand this off to the labs so we can learn” step… but, no. It was just a shrug and literally “come back in 8 months if you’re still having problems.” I became my own lab and fixed my problem. I reported my findings to the doctors, and never heard back. Pretty disappointing.
tastysandwich 5y ago
Nowhere is this more evident than in the treatment of endometriosis. It seems like even gynaecologists are woefully ignorant & untrained in this disease, leading to so much unnecessary suffering by women (my wife included). Guys & gals, if you or your partner suffer from endometriosis, listen up! * Find the best gynaecologist you can that specialises in endo & can perform excision surgery. * Burning off the lesions (ablation) is not an effective treatment. Excision surgery is by far the most effective current treatment. Unfortunately, it seems like many gynaecologists do not have the training to perform this surgery, and therefore don't even mention it (lest they lose your valuable business). * There is absolutely zero evidence that pregnancy "cures" endometriosis, despite doctors continually repeating this myth. My wife's awesome gyno told us - and you can research yourself - that this is absolute rubbish. https://theconversation.com/pregnancy-doesnt-cure-endometriosis-so-where-does-this-advice-come-from-88951 https://theconversation.com/pregnancy-doesnt-cure-endometrio... It causes me to wonder when I go see a doctor, what else are they ignorant about? I like to think I can defer to their expertise, and set my mind to other things. Maybe not.
- anitil 5y ago
  It seems that every case of endometriosis comes with a horror story of years, if not decades, of being ignored or not being taken seriously
gerdesj 5y ago
"lack of consensus about how to treat some of the most common conditions in the human population (e.g. back pain)" That one is obvious: question too broad ... does not compute ... out of cheese error. Back pain is a massive, massive thing - it sometimes doesn't actually involve the back. Here's an anecdote: I (50ish y/o male) used to have episodes of quite crippling to very crippling "back pain". To cut a long story short, I found at least two causes (can't remember the medical term - indicator?) and sorted them. One was putting my wallet in my back pocket - sounds innocuous but it puts pressure on the buttock involved and skews your posture slightly. The other was seemingly ridiculous: When turning over in bed, I used to flick myself over by performing a sort of torsion twist about my spine. That's fine when you are 10 but not 30, 40, 50 etc. Nowadays I simply avoid silly lifting postures and all is generally good. It took about four or five years to recover from past habits.
- ambicapter 5y ago
  I wouldn't call the latter a "fix". More like avoiding the problem. Let's pretend for as second the actual problem was some sort of muscular tightness you've developed, wouldn't the preferable fix be to identify the tightness, do some exercises regularly that alleviate it, and conserve the original function of your body? Otherwise seems like you're just slowly abandoning capabilities that your body used to have.
  - gerdesj 5y ago
    I'm a bloke what is going from 0 to n years old where n is hopefully undefined and roughly "later". I'm currently 51. When I was a child/teen/young adult I had a habit of basically twisting myself in such a way that I stored energy and then released it to turn over - perhaps a bit like a rubber band being twisted. That's fine in a young body but not in an older one. Bear in mind that the same person (mind) is within both the young and old body and it took quite a lot of time to realise that I'm not as agile as I was. I'm a lot more cunning these days and for example can actually ski far better than I used to as a child but if I fall, it bloody hurts! Funnily enough the wallet thing is way more important to my wellbeing.
  - 5y ago
gameswithgo 5y ago
deleted 5y ago
[deleted]
jacquesm 5y ago
Wait until you get to the bullshit around pain management.
refurb 5y ago
Well..yeah? I mean it’s human biology we’re dealing with. Most medicine is “we think is the best approach” with varying levels of data from “best guess” to “a few anecdotes” to “suggestive data” to “robust, well designed clinical trials”. If we only ever treated people with data from the last bucket most of the time your doctor would recommend “just wait and hope it gets better”
gwerbret 5y ago
> I've recently had to deal with the medical profession a lot more than in the past and I'm finding this sort of thing everywhere. OTC medicines that by current standards would not be made OTC This comment reflects a common, but mistaken, believe that OTC = "essentially medicine, but safe enough to not need a prescription". In most cases, nothing could be further from the truth . OTCs of course do include useful medications such as acetaminophen (eg Tylenol), ibuprofen (eg Advil), Aspirin, and so on. However, OTCs also include miscellaneous and assorted nonsense, such as the heroic quantities of vitamin C that many companies like to sell as somehow beneficial, and the assorted concoctions that fall under the banner of "natural health products". In the United States, a product can pass as an OTC "medication" if it passes under the generally regarded as safe (GRAS) exemption. This basically involves sending documents to the FDA that suggest the product should be safe in humans, without necessarily having to prove it's an effective treatment for anything. Couple that with the fact that manufacturers do lie about how well they tested the safety of their products (many are fly-by-night operations with little to lose), and you end up with the situation described in the article. You can probably blame the pharmaceutical companies for some of this confusion, as it is their wont to mix actual medications with miscellaneous nonsense in the pursuit of profit.
S_A_P 5y ago
The fact that I am here is 100% due to the medical science of the 1970s. I was born with a hole in my heart. The fact that I lived past 19 is due to the medical science of the late 1990s. That same area of my heart had a short circuit that would sporadically cause 200bpm+ heart rates and cause me to nearly pass out. It’s called Wolf-Parkinson-White syndrome. I had a cardiac ablation which 100% cured me of that. The fact that I am here now is because of modern medicine. I just completed colon cancer treatment for which I lost a foot of colon and had chemotherapy. As I write this I can’t believe that I am not even listing everything that has happened to me and considered myself generally healthy. Anyway medicine in the US is definitely responsible for my still being alive. I’m sure other health care systems would have kept me alive too but it is pure speculation and luck I suppose. I could just as easily have gotten a bad doctor and not been so lucky.
wolverine876 5y ago
> grift It's not grift, it's people with limited information and resources doing the best they can with their expertise. Should your doctor, lacking certain information, do nothing? Every profession is the same: You rarely have the ideal of perfect information, enough time, enough resources. That's where human adaptability and expertise come into play: You find a way. > I feel like my entire understanding of the medical system in the US was a lie. How much is our responsibilities, especially as educated, informed persons?
sam_bristow 5y ago
The "substantially similar" thing for medical devices is a funny one. Especially when a company depends on that classification and then goes and tries to get a patent on part of their product.
lkrubner 5y ago
"the complete lack of enforcement of what goes in supplements" This is because of the oddly libertarian 1994 DSHEA act: https://ods.od.nih.gov/About/dshea_Wording.aspx https://ods.od.nih.gov/About/dshea_Wording.aspx From 1904 to 1994 the FDA was fairly strict about banning most herbal remedies. Indeed, the FDA was created, in part, to limit the types of "snake oil" treatments that used to abound, and to limit the claims that could made for unproven treatments. But DSHEA opened the door to unproven treatments. In theory, the companies behind these treatments are not allowed to make medical claims, but we've all seen them walk right up to the line and make claims that sound somewhat medical.
- JJMcJ 5y ago
  The fear at the time was that all supplements would be by prescription only. Then a 250 mg capsule of Vitamin C would be $14.00.
m463 5y ago
emergency medical care is almost unquestionable.

petschge 5y ago

And now I am reminded of https://dx.doi.org/10.1136%2Fbmj.327.7429.1459 https://dx.doi.org/10.1136%2Fbmj.327.7429.1459 and the fact that there is no randomised controlled trials that show the effectiveness of parachutes either.

thedailymail 5y ago
Au contraire! https://www.bmj.com/content/363/bmj.k5094 https://www.bmj.com/content/363/bmj.k5094
- petschge 5y ago
  Note that this is the study that prompted the study I linked to. But yes, worth a read too.
astrange 5y ago
As of 2020 there wasn't an RCT for surgical masks being helpful in surgery.

travisathougies 5y ago

You seem to be under the impression that there is some 'advanced technology' out there that will magically solve your problems that the US fails to have. In my experience, many people have a quasi-religious belief in the capability of modern medicine to perform what would otherwise be called a miracle. This belief is typically held without any evidence whatsoever. In reality, there are a plethora of conditions, some very common and serious, that medicine simply has no idea how to treat. The set of completely treatable / curable conditions is much much much smaller than the set of all possible diseases, yet people act as if it's the opposite. This is why things like 'evidence based' medicine is so dangerous -- we don't have evidence for the vast majority of impactful conditions, simply ignoring patients with these conditions is not a workable solution.

jl6 5y ago
I feel proponents of evidence based medicine are perfectly aware of the enormity of the problem, and are working hard to improve the situation.
- twofornone 5y ago
  But the point is that laymen are not, and they put too much faith, on average, into our medical institutions. Our understanding of the human body has advanced enormously with the advent of modern science, but it is still far less complete than most people probably realize when they interact with doctors. Not to mention systemic issues (common to any technical discipline) where medical professionals have to effectively practice with a degree of faith because no one has time to actually review the literature underpinning any given consensus, and that occasionally breeds long lived orthodoxies which do more harm than good...
  - VerminOctopus1 5y ago
    Who exactly should the laymen put their faith into if not medical institutions? That, and the scientific process, are all we’ve got.

caymanjim 5y ago

> OTC medicines that by current standards would not be made OTC Acetaminophen would almost certainly be in this category, if it could even get FDA approval at all. The effective dose is dangerously close to a toxic dose that causes liver damage, and not comfortably-far from the LD50. The only reasons acetaminophen is OTC is that it's been informally grandfathered in, makes an absolute fortune for pharmaceutical companies, and doesn't get you high.

genghisjahn 5y ago
How is this "dangerously close to toxic"? Extra strength is 500mg. Adults should not take more than 3000mg in a day. Taking 7000 more more can lead to liver problems. https://medlineplus.gov/ency/article/002598.htm https://medlineplus.gov/ency/article/002598.htm Common dosage forms and strengths: Suppository: 120 mg, 125 mg, 325 mg, 650 mg Chewable tablets: 80 mg Junior tablets: 160 mg Regular strength: 325 mg Extra strength: 500 mg Liquid: 160 mg/teaspoon (5 milliliters) Drops: 100 mg/mL, 120 mg/2.5 mL Adults should not take more than 3,000 mg of single-ingredient acetaminophen a day. You should take less if you are over 65 years old. Taking more, especially 7,000 mg or more, can lead to a severe overdose problems. If you have liver or kidney disease, you should discuss the use of this drug with your health care provider.
- thedailymail 5y ago
  My understanding is that acetaminophen toxicity has been a problem particularly for children, because 1) the toxic dose is lower, 2) many common OTC products for children include some amount of acetaminophen among their active ingredients and 3) parents may give their children multiple such products (one for runny nose, one for fever reduction, one for nighttime relief, etc.) over the course of a day and end up exceeding the safe dose, leading to liver toxicity. That was the situation a few years ago at least.
  - freedomben 5y ago
    acetaminophen is often put in medications because it's toxic. It's there to dissuade people from *gasp* taking too much and possibly experiencing some positive feelings or enjoyment that offends the sensibilities of decision makers. Better that we destroy a few people's livers than that those people get a buzz. (to be clear, this last sentence is not my view. I'm mocking that view)

lkxijlewlf 5y ago

> in the US was a lie. We're constantly touting that we have the most advanced technology but if you have a complex condition you are likely to fall prey to multiple kinds of grift. I feel like so much of what goes on day to day is one grift or another.

perlgeek 5y ago

My impression of the medical system (both here in Germany, and through reports from the US) is that it's very much like everything else: much is crap, much is mediocre, some good, and a very small, excellent sliver. This goes for doctors, drugs, surgeries, devices. If you want good results, you really have to take matters into your own hands, search for possible treatments yourself, evaluate several doctors until you find a competent one, research possible adverse side effects yourself etc. Example: somebody in my family had two different surgeries by non-standard methods that gave her significant advantages over the regular methods; one of them offered (to our knowledge) in only one hospital in Germany, the other in three. In both cases her regular doctors didn't know about these methods, and were really surprised to hear about them afterwards. In both cases, she learned about these methods through some non-medical channel (a relative read about it in a newspaper, stuff like that). If you just go to the next specialist for the field you need, chances are you don't get the optimal treatment, and the rarer the disease, the less like you get a good treatment.

rscho 5y ago
Robot?
ipaddr 5y ago
This is the reason why the US system is better than Canada. In Canada you can't shop around and need referrals for specialists.
- fpgaminer 5y ago
  IIUC the vast majority of Americans don't have that privilege either and need referrals. You have to be on more expensive health plans to be able to pick your specialist. (That's been my past experience with HMOs). I finally got on a PPO recently and it was a bizarre but pleasant experience to just ... refer myself to a specialist :)
- paxys 5y ago
  You can find the best medical care in the world in the US if you have the means to pay for it. I don't think people will agree though that it is the indicator for the best healthcare system.

jimbob45 5y ago

>the complete lack of enforcement of what goes in supplements I agree with everything you said except for this. If resources are finite to approve and regulate drugs, 3rd-party supplements are the first thing I want tossed before any other more critical medication.

throwaway684936 5y ago
Mislabeled supplements can be very dangerous and some people require supplements due to diet choice or health issues such as pernicious anemia.

kingkawn 5y ago

Welcome to medicine!

tpoacher 5y ago

It's not just the US, it's pretty much the same everywhere. Ex-doc here.

m-p-3 5y ago

> official sounding diagnoses that on inspection are actually defined as "we have no idea" I suffer from IBS, and it's basically a diagnosis of exclusion of everything else. > lack of consensus about how to treat some of the most common conditions in the human population (e.g. back pain) Back pain isn't a condition, it's a symptom. And with the amount of conditions and diseases that have this symptom in their list, it's not surprising there isn't a "one-size-fits-all" remedy or cure to it.

FireBeyond 5y ago
Before my gout became more obviously gout (I had elevated uric acid, but there was often little to no crystallization), one of my diagnoses was "seronegative arthritis" - "It looks like you have arthritis, but you have neither RF or CCP in your blood, so... huh."

lowbloodsugar 5y ago

In the US medicine is a business. Their job is not to make you better. Their job is to get as much money as possible out of you.

emmelaich 5y ago

I had a condition recently, now resolved. During that time I had many consultations with specialists and did quite a bit of research myself. It's astonishing. 80pc or more of shelf products in a pharmacy will do nothing and many will make things worse.

Madmallard 5y ago

I’m feeling this way too hard. I have a condition where any food I consistently eat I become sensitized to and begin developing severe reactions that are alike anaphylaxis in nearly every way but not quite as severe. I have been hospitalized several times now with starvation issues. Yeah immune suppressants sorta worked but you can’t exactly stop a full on immune response so it just bought a little bir of time. (1) mast cell testing - negative (2) ige testing - mostly negative but i also avoid things i react to (3) endoscopy - mostly negative but some inflammation (4) psychological - medications didnt do anything (5) Non-allopathic stool testing from Genova Diagnostcs? astronomically high secretory IgA levels, high zonulin levels, disturbed gut flora populations and altered stool enzyme levels. -> point this out to doctors “sorry cant help ya there. _that’s unvalidated_” Me - well fucking figure out something to try then!!!! Dead end. I am so sick of evidence based medicine.

LorenPechtel 5y ago
At least I don't go down the anaphylaxis route. Unless the picture changes I won't have starvation issues, malnutrition is definitely an issue. I'm sure it's going to end up having to go with immune suppression (and I have every reason to suspect that's only going to be a temporary solution) but so far I've been able to avoid that. Never tried the psych stuff. One doctor suggested it but it felt very much like they were pretending it had off-label relevance--but he ignored my saying capsules, not tablets. Sorry, you're not thinking about it and I'm not taking psych stuff without the doctors considering it carefully. And tablets that can't be cold-turkeied are a hard no for me. (I'm going to go sensitive to the tablet binder at some point. If I go sensitive to a capsule I can at least break it open.) Nobody's suggested the stool testing, is that something new? I'm pretty sure gut flora play a role but I don't have details. (E-mail in my profile.)
- Madmallard 5y ago
  GDX stool testing was something recommended by an integrative dual resident at ucsd for me. I think if you disturb the flora and lining too badly the normal tolerance mechanism with Tregs breaks down. That’s my theory anyway.

zoba 5y ago

Hopefully you never get something unrecognized by current medical knowledge. You visit progressively more esteemed experts: local, regional, national, global. Then you get to the top, and (in my experience) that’s it. I thought for sure there was a “ok now we hand this off to the labs so we can learn” step… but, no. It was just a shrug and literally “come back in 8 months if you’re still having problems.” I became my own lab and fixed my problem. I reported my findings to the doctors, and never heard back. Pretty disappointing.

tastysandwich 5y ago

Nowhere is this more evident than in the treatment of endometriosis. It seems like even gynaecologists are woefully ignorant & untrained in this disease, leading to so much unnecessary suffering by women (my wife included). Guys & gals, if you or your partner suffer from endometriosis, listen up! * Find the best gynaecologist you can that specialises in endo & can perform excision surgery. * Burning off the lesions (ablation) is not an effective treatment. Excision surgery is by far the most effective current treatment. Unfortunately, it seems like many gynaecologists do not have the training to perform this surgery, and therefore don't even mention it (lest they lose your valuable business). * There is absolutely zero evidence that pregnancy "cures" endometriosis, despite doctors continually repeating this myth. My wife's awesome gyno told us - and you can research yourself - that this is absolute rubbish. https://theconversation.com/pregnancy-doesnt-cure-endometriosis-so-where-does-this-advice-come-from-88951 https://theconversation.com/pregnancy-doesnt-cure-endometrio... It causes me to wonder when I go see a doctor, what else are they ignorant about? I like to think I can defer to their expertise, and set my mind to other things. Maybe not.

anitil 5y ago
It seems that every case of endometriosis comes with a horror story of years, if not decades, of being ignored or not being taken seriously

gerdesj 5y ago

"lack of consensus about how to treat some of the most common conditions in the human population (e.g. back pain)" That one is obvious: question too broad ... does not compute ... out of cheese error. Back pain is a massive, massive thing - it sometimes doesn't actually involve the back. Here's an anecdote: I (50ish y/o male) used to have episodes of quite crippling to very crippling "back pain". To cut a long story short, I found at least two causes (can't remember the medical term - indicator?) and sorted them. One was putting my wallet in my back pocket - sounds innocuous but it puts pressure on the buttock involved and skews your posture slightly. The other was seemingly ridiculous: When turning over in bed, I used to flick myself over by performing a sort of torsion twist about my spine. That's fine when you are 10 but not 30, 40, 50 etc. Nowadays I simply avoid silly lifting postures and all is generally good. It took about four or five years to recover from past habits.

ambicapter 5y ago
I wouldn't call the latter a "fix". More like avoiding the problem. Let's pretend for as second the actual problem was some sort of muscular tightness you've developed, wouldn't the preferable fix be to identify the tightness, do some exercises regularly that alleviate it, and conserve the original function of your body? Otherwise seems like you're just slowly abandoning capabilities that your body used to have.
- gerdesj 5y ago
  I'm a bloke what is going from 0 to n years old where n is hopefully undefined and roughly "later". I'm currently 51. When I was a child/teen/young adult I had a habit of basically twisting myself in such a way that I stored energy and then released it to turn over - perhaps a bit like a rubber band being twisted. That's fine in a young body but not in an older one. Bear in mind that the same person (mind) is within both the young and old body and it took quite a lot of time to realise that I'm not as agile as I was. I'm a lot more cunning these days and for example can actually ski far better than I used to as a child but if I fall, it bloody hurts! Funnily enough the wallet thing is way more important to my wellbeing.
- 5y ago

gameswithgo 5y ago

deleted 5y ago

[deleted]

jacquesm 5y ago

Wait until you get to the bullshit around pain management.

refurb 5y ago

Well..yeah? I mean it’s human biology we’re dealing with. Most medicine is “we think is the best approach” with varying levels of data from “best guess” to “a few anecdotes” to “suggestive data” to “robust, well designed clinical trials”. If we only ever treated people with data from the last bucket most of the time your doctor would recommend “just wait and hope it gets better”

gwerbret 5y ago

> I've recently had to deal with the medical profession a lot more than in the past and I'm finding this sort of thing everywhere. OTC medicines that by current standards would not be made OTC This comment reflects a common, but mistaken, believe that OTC = "essentially medicine, but safe enough to not need a prescription". In most cases, nothing could be further from the truth . OTCs of course do include useful medications such as acetaminophen (eg Tylenol), ibuprofen (eg Advil), Aspirin, and so on. However, OTCs also include miscellaneous and assorted nonsense, such as the heroic quantities of vitamin C that many companies like to sell as somehow beneficial, and the assorted concoctions that fall under the banner of "natural health products". In the United States, a product can pass as an OTC "medication" if it passes under the generally regarded as safe (GRAS) exemption. This basically involves sending documents to the FDA that suggest the product should be safe in humans, without necessarily having to prove it's an effective treatment for anything. Couple that with the fact that manufacturers do lie about how well they tested the safety of their products (many are fly-by-night operations with little to lose), and you end up with the situation described in the article. You can probably blame the pharmaceutical companies for some of this confusion, as it is their wont to mix actual medications with miscellaneous nonsense in the pursuit of profit.

S_A_P 5y ago

The fact that I am here is 100% due to the medical science of the 1970s. I was born with a hole in my heart. The fact that I lived past 19 is due to the medical science of the late 1990s. That same area of my heart had a short circuit that would sporadically cause 200bpm+ heart rates and cause me to nearly pass out. It’s called Wolf-Parkinson-White syndrome. I had a cardiac ablation which 100% cured me of that. The fact that I am here now is because of modern medicine. I just completed colon cancer treatment for which I lost a foot of colon and had chemotherapy. As I write this I can’t believe that I am not even listing everything that has happened to me and considered myself generally healthy. Anyway medicine in the US is definitely responsible for my still being alive. I’m sure other health care systems would have kept me alive too but it is pure speculation and luck I suppose. I could just as easily have gotten a bad doctor and not been so lucky.

wolverine876 5y ago

> grift It's not grift, it's people with limited information and resources doing the best they can with their expertise. Should your doctor, lacking certain information, do nothing? Every profession is the same: You rarely have the ideal of perfect information, enough time, enough resources. That's where human adaptability and expertise come into play: You find a way. > I feel like my entire understanding of the medical system in the US was a lie. How much is our responsibilities, especially as educated, informed persons?

sam_bristow 5y ago

The "substantially similar" thing for medical devices is a funny one. Especially when a company depends on that classification and then goes and tries to get a patent on part of their product.

lkrubner 5y ago

"the complete lack of enforcement of what goes in supplements" This is because of the oddly libertarian 1994 DSHEA act: https://ods.od.nih.gov/About/dshea_Wording.aspx https://ods.od.nih.gov/About/dshea_Wording.aspx From 1904 to 1994 the FDA was fairly strict about banning most herbal remedies. Indeed, the FDA was created, in part, to limit the types of "snake oil" treatments that used to abound, and to limit the claims that could made for unproven treatments. But DSHEA opened the door to unproven treatments. In theory, the companies behind these treatments are not allowed to make medical claims, but we've all seen them walk right up to the line and make claims that sound somewhat medical.

JJMcJ 5y ago
The fear at the time was that all supplements would be by prescription only. Then a 250 mg capsule of Vitamin C would be $14.00.

m463 5y ago

emergency medical care is almost unquestionable.