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

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11–20 of 188 posts

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

#11
> Conventional psychiatric drugs and talk therapy are backed up by decades of robust scientific evidence. This is not true, he notes, of the typical PANDAS therapies.

I think my issue with conventional psychiatric drugs and talk therapy is that they are what Tylenol is to a headache, they don't actually cure the condition, they simply mitigate the symptoms. So it's clear that conventional psychiatry has no clue of the root causes, and doesn't yet understand what exactly in the body or brain causes the symptoms. In that sense, I feel anything that can show a return to "normalcy" and has a root cause explanation, should be considered very seriously and researched deeply, over what simply mitigates symptoms.

> The long-term use of antibiotics especially worries him, because it could contribute to the problem of drug-resistant bacteria. This is still the mainstream position: The most recent edition of the Red Book, an exhaustive guide to childhood infectious diseases published every three years by the American Academy of Pediatrics, goes out of its way to recommend that children with PANS and PANDAS symptoms not be given an extended course of antibiotics.

That's a valid concern, but I feel someone curious (like me), just has to wonder, well why are the antibiotics needed for so long? What is it here that prevents them from actually getting rid of strep in the brain? Maybe there are alternatives to just permanent antibiotics dosing.

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

#12

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.

hEDS, the disorder I have, is somewhat controversial like PANS is. the symptoms include hypermobility (overly flexible), spontaneous joint dislocations, widespread pain, joint degeneration, easily damaged skin, fatigue, immune dysfunction and tachycardia. ~2% of the population is hypermobile, but healthy, and don't have those symptoms. hEDS is known to be heritable, but the genes haven't yet been identified. many doc…

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.

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

#13

Earlier quoted context omitted.

hEDS, the disorder I have, is somewhat controversial like PANS is. the symptoms include hypermobility (overly flexible), spontaneous joint dislocations, widespread pain, joint degeneration, easily damaged skin, fatigue, immune dysfunction and tachycardia. ~2% of the population is hypermobile, but healthy, and don't have those symptoms. hEDS is known to be heritable, but the genes haven't yet been identified. many doc…

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.

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

#14
post #3

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.

Have you been tested for Lyme Disease? I know several folks with it, and they had very awful times (unnecessary surgery even) getting diagnosed.

Yes, and that’s not it. Unfortunately my constellation of symptoms does not seem to match any single entity. I have basically resigned myself to thinking that I may have an unusual genetic immunological or neurological defect. Think (this list is not exclusive or constant, and I go through multi-month cycles of subsets of these symptoms - all of them new onset since getting sick): - assorted chest and abdominal pain - thoracic spine pain - migraine - panic attacks, and strong palpable sensations of anxiety - sleep disturbances - blurry vision - one-sided facial numbness and pain - tachycardia - fatigue - nausea - difficulty concentrating - muscle fasciculations

Some days I feel great, some days I’m virtually incapacitated. Hundreds of tests and years of specialists later we have found an assortment of minor things but nothing that really explains it. I’ve even entertained the idea that it’s all psychological but years of therapy have given me techniques to control the panic attacks, but not stop the physical sensations that kick them off.

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

#15

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".

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

#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

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

#17

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".

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 one so desires.

People foolishly say “If only the doctors would see my illness as an illness” not realizing they exist in a false prison. Doctors should not stop you from treating yourself. You are sovereign over your body. Never let them rule.

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

#18

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".

In my case, it is a combination of persistence, a small number of excellent specialists who believe me, and willingness to spend tens of thousands of dollars.

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

#19

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".

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

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

#20

> 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

"mom, my bum itches." So mom decides to look for the source. Seems appropriate/natural.
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