6 ms·

Luck based medicine: my resentful story of becoming a medical miracle

69 points by MikeLumos 4y ago

aatd86 4y ago
People will encounter the same kind of issue in Psychiatry. Because neuro-science is not advanced enough. Quite an interesting article.
- ImHereToVote 4y ago
  I've heard that because of insufficient microscopy, psychology is stuck at alchemy levels of understanding.
  - moloch-hai 4y ago
    Psychiatry and psychology are two distinct fields. Psychiatrists, for lack of useful lab tests, must prescribe by trial and error. They have the additional problem that they use the same name for a variety of different illnesses. It would be like your mechanic says "busted" for all different failures, and just tries replacing random parts until one helps.
Khelavaster 4y ago
Boswelia, which helped this author, is frankincense. It's extremely reductive to call frankincense "an antihistamine"... There is a rich medical tradition of using frankincense for myriad treatments.
- cjbgkagh 4y ago
  Antihistamines are often large ligands and tend to have other neurotransmitter affinities beyond just histamine receptors, chlorogenic receptor affinity is fairly common as well. They’re extremely powerful drugs with incredibly complex side effects. It surprises me that modern medicine uses them so casually, though thank goodness, as easy availability does allow for bypassing the gatekeepers. Just people should know they can make themselves quite sick from it, though if you’re sick it could make you better.
- trynewideas 4y ago
  > Boswelia, which helped this author, is frankincense The author very narrowly cites BosPro,[1] which is a gum extract of Boswellia serrata, or Indian frankincense. Specifically, it claims to have high levels of AKBA (Acetyl-11-Keto-β-Boswellic Acid),[2] an antioxidant with vascular remodeling properties.[3] It probably came up in Dr. Spray-n-pray's treatments because of studies that suggested AKBA could bind to SARS-CoV-2 proteins, but were inconclusive on whether they were effective treatments.[4] The author dismisses the inspecific "inflammation" response from that doctor, but considering that the inflammations AKBA seems to often be found effective as a potential treatment are often related to either severe cardiac issues or neurological inflammation - including MS - I'm naively, but more than a little, concerned for the author. The doctors might have understandably been focused on the author's digestive/GI health, but as noted in the article the brain/GI connection goes very deep. Early-onset symptoms of MS are often digestive in nature.[5] 1: https://www.euromedicausa.com/products/bospro/ https://www.euromedicausa.com/products/bospro/ 2: https://pubchem.ncbi.nlm.nih.gov/compound/Acetyl-11-keto-beta-boswellic-acid https://pubchem.ncbi.nlm.nih.gov/compound/Acetyl-11-keto-bet... 3: https://www.nature.com/articles/srep39809 https://www.nature.com/articles/srep39809 4: https://onlinelibrary.wiley.com/doi/10.1002/ardp.202100160 https://onlinelibrary.wiley.com/doi/10.1002/ardp.202100160 5: https://www.ms.pitt.edu/symptoms/stomach-and-intestinal-issues https://www.ms.pitt.edu/symptoms/stomach-and-intestinal-issu...
  - Khelavaster 4y ago
    Thanks, didn't see that detail! Good sources. MS is triggered by B-cell Boswellic acid derivatives in true frankincense and Indian frankincense are both strongly medicinal. The renin-angiotensin-aldosterone system, vasopressive intenstinal peptide-vasopressin regulatory axis, pinneal-thymic-bone marrow system, hypothalamic-pituitary system, and more are all significantly influenced by boswellia derivatives.
deleted 4y ago
[deleted]
arpyzo 4y ago
My experience with western medicine has been very black and white. Either you're completely broken and it's so obvious what's wrong with you that you barely need a doctor, or you're partially broken in which case doctors know very little and rely on experience, murky clues, and their gut. This made sense once I realized doctors know much less about the human body then they pretend to. Not only is our understanding of physical health far less "advanced" than advertised, but the system is far too complex for any one doctor to comprehend. Medicine is far from the only field in which this is the case. Computers have become too complex for any one engineer to understand in full. Leadership has always had this quality. These are fairly obvious, but I wonder if most (all?) domains of life share this. Consider the recent discovery that the varnish used on Stradivarius violins gave them their amazing sound. Hundreds of years ago, this was almost certainly discovered through luck or intuition. In contrast to the author, I find joy in this. Not only does it reveal boundless territory waiting to be explored and discovered, but it gives meaning and purpose to being human since no technology comes close, or perhaps will ever come close, to matching the extraordinary abilities of human intuition.
- objetovoador 4y ago
  > Either you're completely broken and it's so obvious what's wrong with you that you barely need a doctor, or you're partially broken in which case doctors know very little and rely on experience, murky clues, and their gut. > This made sense once I realized doctors know much less about the human body then they pretend to. I find myself agreeing with this so strongly. Couldn't have put it better myself. Further - I've suffered way worse harm relying on the medical system than the disease (mycoplasma genitalium infection) I had to arduously & painstakingly diagnose on my own (and even treatment was botched by my doctor, I had to insist that I be treated with the CDC recommendation as opposed to his outdated prescription). I don't mean to say they're useless, far from it. In acute care they're the best we've got and they often perform miracles, but for chronic issues (by definition something medicine doesn't have the capability to fix) it's so often a horrible situation. And there's such a strong force to silence criticism of the system.
  - alexvoda 4y ago
cjbgkagh 4y ago
Should have gone to a psychoneuroimmunologist… shame it’s such an overlooked and rare specialty; anti-histamines are often quite powerful anticholinergics, especially when combined, and will substantially perturbe autonomic function. Autonomic dysfunction is often a cause for digestive issues, plus a raft of other things. People with these problems typically also have inflammation issues so the doctor may have come to the right conclusion for the wrong reason. Medicine is such a haphazard science that seems to spend the majority of its time gaslighting patients, at least they’re no longer blood letting or literally blowing smoke up peoples butts so thank goodness for small improvements. Doctors, and by extension much of medicine, are terrible at statistics and the failure to properly use statistics means they constantly overlook otherwise obvious causes. Quite often you’re better off with Dr. Google which implicitly by the nature of the algorithm does use some statistics.
- analog31 4y ago
  Ironically, finding just the right type of specialist is its own kind of luck.
  - cjbgkagh 4y ago
    Double ironically; people told 'it's in your head' if they go to a psychiatrist that'll probably be the closest they'll get to a psychoneuroimmunology (PNI) specialist. Though I figure the chance of finding a good doctor to be akin to finding a winning lottery ticket on the ground.
sundarurfriend 4y ago
Previous (small) discussion: https://news.ycombinator.com/item?id=33257944 https://news.ycombinator.com/item?id=33257944
epmaybe 4y ago
Armchair thought that the author never brought up - food with high protein “tasted gross” per author, until starting what they thought provided anti histamine activity. I know that if I have a stuffed nose from cold or allergy, I also find that food tastes miserable, because sense of smell is so important in human perception of taste.
PragmaticPulp 4y ago
So the author was “prescribed” a cocktail of 5 supplements, found they could eat more protein afterward, and then assumed that Boswelia was the solution? Did I miss something, or did they just assume 1 of the 5 supplements was the solution? This entire post is a good example of how post-facto reasoning can take over in the space of anecdotal medical changes. The author doesn’t even seem to realize that Boswelia is a notable anti-microbial, which is a nontrivial factor when considering gut issues and potential microbiome changes. Several supplements are potent antimicrobials against the microbiome, some on par with prescription antibiotics. I wouldn’t be surprised if the combination of 5 supplements the doctor prescribed simply nuked their microbiome from orbit and it happened to come back in a somewhat healthier combination. There is precedent for this in controlled studies, but results are very mixed. The SlimeTimeMoldTime blog they (rightly) criticize is another example of post-facto reasoning taking over at the intersection between “rationality blogging” and medicine: We’ve known for a long time that monotonous diets like potato diets result in weight loss. It’s not magic, it’s just that potatoes are boring and bland and you’re going to eat less food if much of your diet is potatoes. Yet the rationalist community has been doing mental backflips to try to come up with a more complicated explanation for why this might be the case.
- simonh 4y ago
  > So the author was “prescribed” a cocktail of 5 supplements, found they could eat more protein afterward, and then assumed that Boswelia was the solution? Did I miss something, or did they just assume 1 of the 5 supplements was the solution? The author isn’t explicit, but it seems like the pills were prescribed over a period of time, possible separately, possibly overlapping. The author describes using a spreadsheet up correlate which pills coincided with what dietary changes and identifying it that way. So it wasn’t an assumption, but it wasn’t definite either until it was properly tested. > The author doesn’t even seem to realize that Boswelia is a notable anti-microbial The author explains that they researched Boswelia and it’s mechanisms of action, so while they don’t explain everything they know about it in the article, assuming they don’t know basic facts about it seems unreasonable.
- spiffytech 4y ago
  The author sounds like they methodically tested their supplement intake until they identified the one that produced the change. The fact that the symptoms returned after they stopped taking the supplements indicates the solution wasn't a one-time microbiome adjustment. > Back in May the timing of the miracle suggested that one of Dr. Spray-n-pray’s pills was responsible. This was more or less confirmed when I weaned off the various pills and the subtle grossness around food started to return. I could also feel growing sugar cravings. So it was important to figure out what the miracle pill was and get back on it immediately. > I made a spreadsheet tracking the changes as best I could – when my diet changed (using grocery order data), when I’d started and stopped which pills.
deleted 4y ago
[deleted]
cobertos 4y ago
That affiliate link in the article made this much harder to trust. Wonder if ChatGPT could generate articles like this, just to put some product at the center of story. That being said, 33% of doctors I've dealt with follow a simple heuristic[1], which makes paying for those visits so much more annoying. But it is worth it when I find a specialist that legitimately ends up helping. [1]: https://astralcodexten.substack.com/p/heuristics-that-almost-always-work https://astralcodexten.substack.com/p/heuristics-that-almost...
mharig 4y ago
ALL (drug) medicine is luck based. Even antibiotics have their non-responders. Best to avoid doctors and make educated self-tests after internet/Google Scholar search.
- IIsi50MHz 4y ago
  Conclusion does not follow from first assertion. Self-diagnosis, while it can be a fair starting point, carries ample risks that are best mitigated with appropriate consultation. That consultation /might/ not be with a doctor, but there does not seem to be legitimate cause to disavow all dactors.
  - mharig 4y ago
    The art is to know when to do what. I didn't write 'best to avoid all doctors under any circumstances'. I am just pissed by the people nowadays running to doctors with the slightest symptoms or tiniest wounds. If you have seen the movie Matrix, you know where this will end. Without evil robots.
    - IIsi50MHz 4y ago
      I, too, am against "running to doctors with the slightest symptoms or tiniest wounds" on the grounds that it seems like a form of hypochondria, and can produce something like a Denial of Service attack, especially at Emergency rooms. But I'll acknowledge that some 'small' indications are, with appropiate context, worth a consult.
carapace 4y ago
Over the last two years I've gotten into gardening in a serious way. I have about a hundred species of plants growing now, and another three hundred fifty or so waiting for Spring. Coming from a sciencey computer nerd background I have to say, plants are incredible. For one thing, they are very intelligent and adaptable. They have senses we don't fully understand. Together with fungi and microbes in soil they form LANs that administer large areas of the Earth and adjust environmental conditions to suit themselves. Seriously, look at living things as nanotechnology and you realize we are in (and of) a kind of living fractal cathedral of information and life. Anyway, before I get too lyrical, my point is that plants produce myriad chemical substances that have effects on your metabolism. We are all familiar (if only by reputation) with the heavy hitters: Coffee, Coca, Cacao, Cannabis, (lotta C's) Tobacco, etc. But there are thousands of species of plants that produce innumerable substances that are essentially medicines: chemicals that have a stereotypical effect on metabolism. It's entirely reasonable and unsurprising that some plant, such as Boswellia sacra, the sap of which is the source of frankincense, could have such an effect. A well-stocked garden/forest is a medicine cabinet. - - - - As the author points out, it behooves us to "do science to it", eh? When FitBit-style wearable medical monitoring devices become commonplace we're going to have a wealth of data to correlate, at least in theory.
anotherevan 4y ago
I must admit I only scanned the article but when I started reading I thought, "Hmmm, gut pain and nobody knows what to do, bet the author is female," and scrolled back up to check and sure enough. This has been my experience with my daughter's complex health issues - including some absolutely horrible experiences with gastroenterologists in particular. (We're in Australia, BTW.)

69 points by MikeLumos 4y ago

People will encounter the same kind of issue in Psychiatry. Because neuro-science is not advanced enough. Quite an interesting article.

ImHereToVote 4y ago
I've heard that because of insufficient microscopy, psychology is stuck at alchemy levels of understanding.
- moloch-hai 4y ago
  Psychiatry and psychology are two distinct fields. Psychiatrists, for lack of useful lab tests, must prescribe by trial and error. They have the additional problem that they use the same name for a variety of different illnesses. It would be like your mechanic says "busted" for all different failures, and just tries replacing random parts until one helps.

Khelavaster 4y ago

Boswelia, which helped this author, is frankincense. It's extremely reductive to call frankincense "an antihistamine"... There is a rich medical tradition of using frankincense for myriad treatments.

cjbgkagh 4y ago
Antihistamines are often large ligands and tend to have other neurotransmitter affinities beyond just histamine receptors, chlorogenic receptor affinity is fairly common as well. They’re extremely powerful drugs with incredibly complex side effects. It surprises me that modern medicine uses them so casually, though thank goodness, as easy availability does allow for bypassing the gatekeepers. Just people should know they can make themselves quite sick from it, though if you’re sick it could make you better.
trynewideas 4y ago
> Boswelia, which helped this author, is frankincense The author very narrowly cites BosPro,[1] which is a gum extract of Boswellia serrata, or Indian frankincense. Specifically, it claims to have high levels of AKBA (Acetyl-11-Keto-β-Boswellic Acid),[2] an antioxidant with vascular remodeling properties.[3] It probably came up in Dr. Spray-n-pray's treatments because of studies that suggested AKBA could bind to SARS-CoV-2 proteins, but were inconclusive on whether they were effective treatments.[4] The author dismisses the inspecific "inflammation" response from that doctor, but considering that the inflammations AKBA seems to often be found effective as a potential treatment are often related to either severe cardiac issues or neurological inflammation - including MS - I'm naively, but more than a little, concerned for the author. The doctors might have understandably been focused on the author's digestive/GI health, but as noted in the article the brain/GI connection goes very deep. Early-onset symptoms of MS are often digestive in nature.[5] 1: https://www.euromedicausa.com/products/bospro/ https://www.euromedicausa.com/products/bospro/ 2: https://pubchem.ncbi.nlm.nih.gov/compound/Acetyl-11-keto-beta-boswellic-acid https://pubchem.ncbi.nlm.nih.gov/compound/Acetyl-11-keto-bet... 3: https://www.nature.com/articles/srep39809 https://www.nature.com/articles/srep39809 4: https://onlinelibrary.wiley.com/doi/10.1002/ardp.202100160 https://onlinelibrary.wiley.com/doi/10.1002/ardp.202100160 5: https://www.ms.pitt.edu/symptoms/stomach-and-intestinal-issues https://www.ms.pitt.edu/symptoms/stomach-and-intestinal-issu...
- Khelavaster 4y ago
  Thanks, didn't see that detail! Good sources. MS is triggered by B-cell Boswellic acid derivatives in true frankincense and Indian frankincense are both strongly medicinal. The renin-angiotensin-aldosterone system, vasopressive intenstinal peptide-vasopressin regulatory axis, pinneal-thymic-bone marrow system, hypothalamic-pituitary system, and more are all significantly influenced by boswellia derivatives.

deleted 4y ago

[deleted]

arpyzo 4y ago

My experience with western medicine has been very black and white. Either you're completely broken and it's so obvious what's wrong with you that you barely need a doctor, or you're partially broken in which case doctors know very little and rely on experience, murky clues, and their gut. This made sense once I realized doctors know much less about the human body then they pretend to. Not only is our understanding of physical health far less "advanced" than advertised, but the system is far too complex for any one doctor to comprehend. Medicine is far from the only field in which this is the case. Computers have become too complex for any one engineer to understand in full. Leadership has always had this quality. These are fairly obvious, but I wonder if most (all?) domains of life share this. Consider the recent discovery that the varnish used on Stradivarius violins gave them their amazing sound. Hundreds of years ago, this was almost certainly discovered through luck or intuition. In contrast to the author, I find joy in this. Not only does it reveal boundless territory waiting to be explored and discovered, but it gives meaning and purpose to being human since no technology comes close, or perhaps will ever come close, to matching the extraordinary abilities of human intuition.

objetovoador 4y ago
> Either you're completely broken and it's so obvious what's wrong with you that you barely need a doctor, or you're partially broken in which case doctors know very little and rely on experience, murky clues, and their gut. > This made sense once I realized doctors know much less about the human body then they pretend to. I find myself agreeing with this so strongly. Couldn't have put it better myself. Further - I've suffered way worse harm relying on the medical system than the disease (mycoplasma genitalium infection) I had to arduously & painstakingly diagnose on my own (and even treatment was botched by my doctor, I had to insist that I be treated with the CDC recommendation as opposed to his outdated prescription). I don't mean to say they're useless, far from it. In acute care they're the best we've got and they often perform miracles, but for chronic issues (by definition something medicine doesn't have the capability to fix) it's so often a horrible situation. And there's such a strong force to silence criticism of the system.
- alexvoda 4y ago

cjbgkagh 4y ago

Should have gone to a psychoneuroimmunologist… shame it’s such an overlooked and rare specialty; anti-histamines are often quite powerful anticholinergics, especially when combined, and will substantially perturbe autonomic function. Autonomic dysfunction is often a cause for digestive issues, plus a raft of other things. People with these problems typically also have inflammation issues so the doctor may have come to the right conclusion for the wrong reason. Medicine is such a haphazard science that seems to spend the majority of its time gaslighting patients, at least they’re no longer blood letting or literally blowing smoke up peoples butts so thank goodness for small improvements. Doctors, and by extension much of medicine, are terrible at statistics and the failure to properly use statistics means they constantly overlook otherwise obvious causes. Quite often you’re better off with Dr. Google which implicitly by the nature of the algorithm does use some statistics.

analog31 4y ago
Ironically, finding just the right type of specialist is its own kind of luck.
- cjbgkagh 4y ago
  Double ironically; people told 'it's in your head' if they go to a psychiatrist that'll probably be the closest they'll get to a psychoneuroimmunology (PNI) specialist. Though I figure the chance of finding a good doctor to be akin to finding a winning lottery ticket on the ground.

sundarurfriend 4y ago

Previous (small) discussion: https://news.ycombinator.com/item?id=33257944 https://news.ycombinator.com/item?id=33257944

epmaybe 4y ago

Armchair thought that the author never brought up - food with high protein “tasted gross” per author, until starting what they thought provided anti histamine activity. I know that if I have a stuffed nose from cold or allergy, I also find that food tastes miserable, because sense of smell is so important in human perception of taste.

PragmaticPulp 4y ago

So the author was “prescribed” a cocktail of 5 supplements, found they could eat more protein afterward, and then assumed that Boswelia was the solution? Did I miss something, or did they just assume 1 of the 5 supplements was the solution? This entire post is a good example of how post-facto reasoning can take over in the space of anecdotal medical changes. The author doesn’t even seem to realize that Boswelia is a notable anti-microbial, which is a nontrivial factor when considering gut issues and potential microbiome changes. Several supplements are potent antimicrobials against the microbiome, some on par with prescription antibiotics. I wouldn’t be surprised if the combination of 5 supplements the doctor prescribed simply nuked their microbiome from orbit and it happened to come back in a somewhat healthier combination. There is precedent for this in controlled studies, but results are very mixed. The SlimeTimeMoldTime blog they (rightly) criticize is another example of post-facto reasoning taking over at the intersection between “rationality blogging” and medicine: We’ve known for a long time that monotonous diets like potato diets result in weight loss. It’s not magic, it’s just that potatoes are boring and bland and you’re going to eat less food if much of your diet is potatoes. Yet the rationalist community has been doing mental backflips to try to come up with a more complicated explanation for why this might be the case.

simonh 4y ago
> So the author was “prescribed” a cocktail of 5 supplements, found they could eat more protein afterward, and then assumed that Boswelia was the solution? Did I miss something, or did they just assume 1 of the 5 supplements was the solution? The author isn’t explicit, but it seems like the pills were prescribed over a period of time, possible separately, possibly overlapping. The author describes using a spreadsheet up correlate which pills coincided with what dietary changes and identifying it that way. So it wasn’t an assumption, but it wasn’t definite either until it was properly tested. > The author doesn’t even seem to realize that Boswelia is a notable anti-microbial The author explains that they researched Boswelia and it’s mechanisms of action, so while they don’t explain everything they know about it in the article, assuming they don’t know basic facts about it seems unreasonable.
spiffytech 4y ago
The author sounds like they methodically tested their supplement intake until they identified the one that produced the change. The fact that the symptoms returned after they stopped taking the supplements indicates the solution wasn't a one-time microbiome adjustment. > Back in May the timing of the miracle suggested that one of Dr. Spray-n-pray’s pills was responsible. This was more or less confirmed when I weaned off the various pills and the subtle grossness around food started to return. I could also feel growing sugar cravings. So it was important to figure out what the miracle pill was and get back on it immediately. > I made a spreadsheet tracking the changes as best I could – when my diet changed (using grocery order data), when I’d started and stopped which pills.

deleted 4y ago

[deleted]

cobertos 4y ago

That affiliate link in the article made this much harder to trust. Wonder if ChatGPT could generate articles like this, just to put some product at the center of story. That being said, 33% of doctors I've dealt with follow a simple heuristic[1], which makes paying for those visits so much more annoying. But it is worth it when I find a specialist that legitimately ends up helping. [1]: https://astralcodexten.substack.com/p/heuristics-that-almost-always-work https://astralcodexten.substack.com/p/heuristics-that-almost...

mharig 4y ago

ALL (drug) medicine is luck based. Even antibiotics have their non-responders. Best to avoid doctors and make educated self-tests after internet/Google Scholar search.

IIsi50MHz 4y ago
Conclusion does not follow from first assertion. Self-diagnosis, while it can be a fair starting point, carries ample risks that are best mitigated with appropriate consultation. That consultation /might/ not be with a doctor, but there does not seem to be legitimate cause to disavow all dactors.
- mharig 4y ago
  The art is to know when to do what. I didn't write 'best to avoid all doctors under any circumstances'. I am just pissed by the people nowadays running to doctors with the slightest symptoms or tiniest wounds. If you have seen the movie Matrix, you know where this will end. Without evil robots.
  - IIsi50MHz 4y ago
    I, too, am against "running to doctors with the slightest symptoms or tiniest wounds" on the grounds that it seems like a form of hypochondria, and can produce something like a Denial of Service attack, especially at Emergency rooms. But I'll acknowledge that some 'small' indications are, with appropiate context, worth a consult.

carapace 4y ago

Over the last two years I've gotten into gardening in a serious way. I have about a hundred species of plants growing now, and another three hundred fifty or so waiting for Spring. Coming from a sciencey computer nerd background I have to say, plants are incredible. For one thing, they are very intelligent and adaptable. They have senses we don't fully understand. Together with fungi and microbes in soil they form LANs that administer large areas of the Earth and adjust environmental conditions to suit themselves. Seriously, look at living things as nanotechnology and you realize we are in (and of) a kind of living fractal cathedral of information and life. Anyway, before I get too lyrical, my point is that plants produce myriad chemical substances that have effects on your metabolism. We are all familiar (if only by reputation) with the heavy hitters: Coffee, Coca, Cacao, Cannabis, (lotta C's) Tobacco, etc. But there are thousands of species of plants that produce innumerable substances that are essentially medicines: chemicals that have a stereotypical effect on metabolism. It's entirely reasonable and unsurprising that some plant, such as Boswellia sacra, the sap of which is the source of frankincense, could have such an effect. A well-stocked garden/forest is a medicine cabinet. - - - - As the author points out, it behooves us to "do science to it", eh? When FitBit-style wearable medical monitoring devices become commonplace we're going to have a wealth of data to correlate, at least in theory.

anotherevan 4y ago

I must admit I only scanned the article but when I started reading I thought, "Hmmm, gut pain and nobody knows what to do, bet the author is female," and scrolled back up to check and sure enough. This has been my experience with my daughter's complex health issues - including some absolutely horrible experiences with gastroenterologists in particular. (We're in Australia, BTW.)