Looks like they lack a good clear diagnostic procedure for this (and most other autoimmune syndromes it seems), most likely because of the relation to the brain, can't just take biopsies... How would you even try to approach this?
A boy, his brain, and a decades-long medical controversy
41–50 of 188 posts
Re: A boy, his brain, and a decades-long medical controversy
#42This 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.
Most doctors today seem to memorize and execute flowcharts and leave creative thinking in undergrad. Anything that deviates from the norm results in “fuck off lol”.
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Re: A boy, his brain, and a decades-long medical controversy
#43> 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 th…
> 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.
It's actually a bit worse than this, and that's saying something. Have a look at this article from 2019 summarizing the lay of the land in research on mental health treatment:
https://pubmed.ncbi.nlm.nih.gov/31474241/
There's a link inside to a free full text version of the article. I encourage you to explore the citations in the paper, too, they lead down some fun rabbit holes.
Keep in mind too that the authors largely stay away from the potential iatrogenic harms of both prescribed psychotropics and talk therapy, both of which are terribly under-researched.
Re: A boy, his brain, and a decades-long medical controversy
#44Earlier quoted context omitted.
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…
Not a doctor, just being anecdotal. Any wheezing? I have most of these issues from hay fever/allergy, and just mentioning it because I was not even looking into it as as option. Especially if symptoms occurred after moving, changing environment (I had moved to a different country). Some of those could also be the outcome of others, feedback with others, medicine you take to address them etc., e.g. chest pain and panic attacks or puffers/adrenaline and palpable anxiety.
Re: A boy, his brain, and a decades-long medical controversy
#45You don't know the extent of human bias. All humans are ruled more by bias than by logic, doctors included AND you included as well. What's especially worse is that Doctors are trained to mistrust a patient. They view patients as lower ranking simpletons so they trust established knowledge more than they trust a patients description of an anomaly.
The key here that you have to realize is that what the doctors are doing is completely normal. All people are like this, including you, and I can prove it.
In order to prove it though I may have to say something off topic and somewhat offensive. Our biases make what I'm about to say offensive but logically what I'm saying actually makes sense, it is just your biases overriding the logic. So take the time to consider that before you start raging.
Remember, The point here is to make you self aware of your bias overriding your logic.
Consider this: Homosexuality is a biological disorder.
The statement is highly offensive but logically it makes sense. Natural Selection weeds out those who can't reproduce and obviously Homosexual men or women are less likely to breed with anything other than their own sex, thereby naturally selecting themselves out of the tree of life.
Thus homosexuality must be an recent anomaly as an evolutionary trait as it would have naturally selected itself out eons ago if it was a natural trait.
The overall point here isn't to debate the validity of my statement. The point is to see that there is certain logic behind my statement that is worth discussion but modern culture has injected biases into all our brains that make the otherwise logical statement appear completely offensive.
Your entire life is ruled by a cultural narrative and very few people have the capability of breaking out of this narrative. Doctors are indoctrinated in med school and residency with another cultural narrative and very few people are able to break out of it. The UCLA doctor who dismissed antibiotics is just like someone who dismisses the possibility that homosexuality is a disorder. Both of these people have their thinking ruled by the established cultural narrative.
Whether my example helped you become more self aware or whether you were already self aware of this possibility is sort of irrelevant as I think my point will come across regardless.
Re: A boy, his brain, and a decades-long medical controversy
#46Earlier 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.
A) Think IT Support suddenly exposed to a knowledgeable user B) Just like IT Support, doctors abilities are distributed on a bell curve. We all hope that the curve is leaning to the right, but I think the jury is still out on that one.
The filtering, testing requirements, and frankly unpleasantness involved in medicine (in the United States) not only drives the curve to the right, but also lops off a good portion of the left side of the curve of all of those who want to become physicians.
Re: A boy, his brain, and a decades-long medical controversy
#47Earlier 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…
Man deserves true freedom. To self diagnose if one so desires, to kill oneself through incorrect prescriptions if one so desires.
The thing is, none of the rules you mention exist to stop patients from doing anything. Rather, they exist to protect desperate patients from con artists selling (sometimes literally) snake oil "cures".
I'm reminded of accredited investor rules -- which also chafe at times, but are equally essential for protecting people from scams.
Re: A boy, his brain, and a decades-long medical controversy
#48Earlier 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.
This article is literally about patients who followed a crazy idea and the doctors who dismissed them. The crazy people here were the doctors.
What the mother did here was more rational and logical then every doctor in the department of UCLA. Think on that, then think about the amount of money UCLA charges patients and whether or not this sort of incompetency justifies this high level of monetary compensation.
I would say all people are irrational and biased. The issue is Doctors in general think they're better than everyone. They dismiss the fact that the biases and crazy ideas that effect all of humanity could effect them as well.
Re: A boy, his brain, and a decades-long medical controversy
#49Earlier quoted context omitted.
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…
Not a doctor, just being anecdotal. Any wheezing? I have most of these issues from hay fever/allergy, and just mentioning it because I was not even looking into it as as option. Especially if symptoms occurred after moving, changing environment (I had moved to a different country). Some of those could also be the outcome of others, feedback with others, medicine you take to address them etc., e.g. chest pain and pani…
No wheezing. I’ve had a full allergic workup and am negative to everything. No medicine to address the panic attacks - I have a beta blocker for if things get really bad but I try to avoid taking it and have only taken maybe three in the last two years.
I actually am getting ready to move back to where I lived before I got sick on the off chance that that helps.
Re: A boy, his brain, and a decades-long medical controversy
#50Earlier quoted context omitted.
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.
I mean, isn't that just status quo bias? You can come up with a story for how anything will result in negative consequences. If we didn't have medical gatekeeping you could just as easily come up with a story about how requiring people to get approval from a doctor to treat themselves could result in someone fainting at the wheel and killing a family of four, and it'd be just as meaningless as this.