A boy, his brain, and a decades-long medical controversy • Hacker News Board

Re: A boy, his brain, and a decades-long medical controversy

#21

Post by unanswered » Wed, Jun 16, 2021, 5:15 AM UTC

missblit wrote: post #19

unanswered wrote: post #15

Earlier quoted context omitted.

You actually get tests? Consider yourself lucky. For me it's just "I don't recognize those symptoms. Symptom A and symptom B are never known to go together so I'll just ignore B, and there are no tests for conditions which cause A, so fuck off lol".

Hickam's Dictum: A man can have as many diseases as he damn well pleases.

I've heard it before, and my very serious reply is this: "well, I please only to have one, so you will have to keep searching until you find it"!

Re: A boy, his brain, and a decades-long medical controversy

#22

Post by unanswered » Wed, Jun 16, 2021, 5:20 AM UTC

renewiltord wrote: post #17

unanswered wrote: post #15

Earlier quoted context omitted.

You actually get tests? Consider yourself lucky. For me it's just "I don't recognize those symptoms. Symptom A and symptom B are never known to go together so I'll just ignore B, and there are no tests for conditions which cause A, so fuck off lol".

As usual this is the result of gatekeeping in the medical industry. It is typical of this industry to kill a million people through inaction to avoid killing one through action. As a bonus, by arrogating the exclusive right to drug prescription and analysis to themselves they can charge what they want. Man deserves true freedom. To self diagnose if one so desires, to kill oneself through incorrect prescriptions if on…

That would be very helpful if I knew how to treat myself, or if some of the alternatives I might try were as safe as I should desire for experimentation. If anything, hare-brained attempts by loiscenced physicians at treatment with antibiotics, which left me with tinnitus, have made me very skeptical of any treatment until it's properly explained why I should agree. But I will leave that fight for when anyone can come up with a plausible option.

Re: A boy, his brain, and a decades-long medical controversy

#23

Post by teej » Wed, Jun 16, 2021, 5:23 AM UTC

maybelsyrup wrote: post #16

> Rita thought back to the winter. She couldn’t remember Timothy coming down with a sore throat, but just before the ski trip she had noticed that the skin around his anus looked a little red. U wot m8 This is a ten year old. My parents were not inspecting that particular feature of my anatomy at that age. What's going on here

This is the weirdest part of the article by far. And absolutely no explanation.

Re: A boy, his brain, and a decades-long medical controversy

#24

Post by Aerroon » Wed, Jun 16, 2021, 5:25 AM UTC

>Conventional psychiatric drugs and talk therapy are backed up by decades of robust scientific evidence.

While it's true that there's plenty of evidence for 'conventional' psychiatric treatment working, the problem is with how it works in practice. There are few real objective tests involved and patients are prescribed various drugs to try to see if some of them would help. I'm surprised psychiatrists don't have dartboards in their office to decide on what to use.

Throwing in some antibiotics just on an off-chance seems like it would be a reasonable thing to try. Sure, there's a problem with antibiotic resistant bacteria, but this treatment doesn't have to be done immediately. If a patient has been prescribed various different meds for 6 months and none of them help, then why not try?

Re: A boy, his brain, and a decades-long medical controversy

#25

Post by wyldfire » Wed, Jun 16, 2021, 5:26 AM UTC

> “That’s a made-up disease,” she recalls the doctor saying.

This is an unfortunate consequence of physicians treating many patients with underlying psychiatric problems. They want a diagnosis (or in some cases are drug-seeking) and they leverage these syndromes in order to get the attention or drugs they're after. The syndromes are poorly understood and are only relevant if you can rule out several other possible explanations using tests. If a physician treats 100 patients claiming to suffer from $SUPER_RARE_SYNDROME maybe ninety nine have a history of claiming other unique diseases. It's too easy to sweep the level-headed patients in with the crackpots. "House, M.D." was an interesting and compelling drama but there's no way you could devote the kind of time to investigate interesting cases like that.

Re: A boy, his brain, and a decades-long medical controversy

#26

Post by intro-b » Wed, Jun 16, 2021, 5:38 AM UTC

maybelsyrup wrote: post #16

> Rita thought back to the winter. She couldn’t remember Timothy coming down with a sore throat, but just before the ski trip she had noticed that the skin around his anus looked a little red. U wot m8 This is a ten year old. My parents were not inspecting that particular feature of my anatomy at that age. What's going on here

that's like the least weird part of this article

kid running around the house looking for a towel after showering? asking parents about a weird rash/redness in that area to check out? quickly changing in the family/living room before something?

Re: A boy, his brain, and a decades-long medical controversy

#27

Post by Auracle » Wed, Jun 16, 2021, 5:49 AM UTC

LudwigNagasena wrote: post #13

marcan_42 wrote: post #12

Earlier quoted context omitted.

I don't understand why so many doctors seem incapable of doing research or accept research provided to them by their patients. If you have symptoms that match a condition documented in medical literature, and the doctor can't come up with a better fitting explanation, why would they reject it? It's like these people learned a subset of their field and then just refuse to ever learn anything new.

That’s because 99% of patients who do their own research come up with some crazy ideas.

I find that if you go in to an appointment with a peer reviewed study printed out things will go better for you. It’s a good way to signal “I did my own research, but not on YouTube.”

Re: A boy, his brain, and a decades-long medical controversy

#28

Post by jcelerier » Wed, Jun 16, 2021, 5:50 AM UTC

renewiltord wrote: post #17

unanswered wrote: post #15

Earlier quoted context omitted.

You actually get tests? Consider yourself lucky. For me it's just "I don't recognize those symptoms. Symptom A and symptom B are never known to go together so I'll just ignore B, and there are no tests for conditions which cause A, so fuck off lol".

As usual this is the result of gatekeeping in the medical industry. It is typical of this industry to kill a million people through inaction to avoid killing one through action. As a bonus, by arrogating the exclusive right to drug prescription and analysis to themselves they can charge what they want. Man deserves true freedom. To self diagnose if one so desires, to kill oneself through incorrect prescriptions if on…

That's all fine and dandy until the moment where you self-medicate, take your car, faint at the wheel and kill a family of four.

Re: A boy, his brain, and a decades-long medical controversy

#29

Post by Auracle » Wed, Jun 16, 2021, 5:54 AM UTC

unanswered wrote: post #15

bigcorp-slave wrote: post #2

This rings true. I have something wrong with me. I’ve spent many years of my life trying to figure out what it is. But never fully have - it’s sick, but it seems like most doctors operate under “you have symptoms, I order a few tests, they were negative, guess we’ll never know, fuck off lol”. It sucks. I hope these families make progress.

You actually get tests? Consider yourself lucky. For me it's just "I don't recognize those symptoms. Symptom A and symptom B are never known to go together so I'll just ignore B, and there are no tests for conditions which cause A, so fuck off lol".

How about “your test came back too low, but I’m not even going to think about treating you because you don’t fit the profile.” You beg to at least be referred to a specialist. The specialist all but laughs you off but agrees to test again. The test comes back even lower. You then have to ask the “specialist” for a specific treatment because you apparently know more than he does.

I’ve never had a good experience with an endocrinologist.

Re: A boy, his brain, and a decades-long medical controversy

#30

Post by tedk-42 » Wed, Jun 16, 2021, 5:58 AM UTC

teej wrote: post #23

maybelsyrup wrote: post #16

> Rita thought back to the winter. She couldn’t remember Timothy coming down with a sore throat, but just before the ski trip she had noticed that the skin around his anus looked a little red. U wot m8 This is a ten year old. My parents were not inspecting that particular feature of my anatomy at that age. What's going on here

This is the weirdest part of the article by far. And absolutely no explanation.

Yep, just the usual 'mum look at my itchy anus skin' playbook.

Strange that antibiotics were the fix. To be honest a lot of doctors that I visited when having a cold or flu would prescribe antibiotics as a norm and it's funny to think how such a simple thing could have cured the kid and saved the parents a lot of grief.