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

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

#181

Earlier quoted context omitted.

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.

That’s all fine and dandy until, lacking medication, you faint at the wheel and kill a family of five. Five being greater than four it is clearly worse not to allow for self-medication.

But it's incredibly more likely than if left to themselves, people will self-medicate, and not necessarily with due research beforehand.

To give an example: in my country, 56% of people have already medicated with homeopathy (a known scam for decades). Imagine if they could just buy any other medication, which unlike homeopathy, could have strong secondary effects ? Those 56% people who have "illnesses" with very benign symptoms that for most cases cures itself in a couple days without any drugs (homeopathy is used for anything, common cold, headaches, itches, you name it ...), now they're potentially taking much more dangerous meds. So it's clearly not equivalent as 56% of people definitely don't have "faint-at-the-wheel" symptoms today.

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

#182
post #9
post #7

This was identical to my story as a child/teenager. Went through multiple doctors for a year or two. It was finally diagnosed as PANDAS. A few months of antibiotics and about 6 months later I returned to normal. Still functional as of many years later. I’m glad this is being solved and caught earlier.

Have you been on antibiotics ever since? Or can you stop taking them eventually?

If you took antibiotics indefinitely, I would assume you would die, if just from diarrhea.

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

#184
post #154

Earlier 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…

This sounds somewhat similar to symptoms I am having. Currently on a 5 month journey trying to get a diagnosis. I have abdominal pain, headaches, high blood pressure with periodical orthostatic hypertension (my blood pressure goes up in the standing position; it is supposed to go down), tremors, tachycardia, fatigue, difficulty concentrating, constipation or diarrhea, severe sleep disturbances, muscle spasm and cramp…

And are you taking monoamine oxidase inhibitors?

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

#185

Earlier quoted context omitted.

That’s all fine and dandy until, lacking medication, you faint at the wheel and kill a family of five. Five being greater than four it is clearly worse not to allow for self-medication.

But it's incredibly more likely than if left to themselves, people will self-medicate, and not necessarily with due research beforehand. To give an example: in my country, 56% of people have already medicated with homeopathy (a known scam for decades). Imagine if they could just buy any other medication, which unlike homeopathy, could have strong secondary effects ? Those 56% people who have "illnesses" with very ben…

The existence of side-effects affects how many people will take the drug. I don’t think the zero side-effect situation illustrates anything any more than giving away your product for free tells you how many people will buy it.

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

#186
post #9
post #7

This was identical to my story as a child/teenager. Went through multiple doctors for a year or two. It was finally diagnosed as PANDAS. A few months of antibiotics and about 6 months later I returned to normal. Still functional as of many years later. I’m glad this is being solved and caught earlier.

Have you been on antibiotics ever since? Or can you stop taking them eventually?

Stopped taking them after about a 8 months or so on them and symptoms went away. After that it’s been gone! Insane that it worked.

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

#187
post #167

Earlier quoted context omitted.

I did read all of your answers. From them, I was at least able to understand that you've got a personal problem with docs. No shame in that, many people are the same. That must be part of a bias such as those that you talk about so often. Now, you associated "I am a researcher in that field" with "docs think their patients are inferior beings". So, how about a reference supporting your statement? Or were those statem…

>I did read all of your answers. From them, I was at least able to understand that you've got a personal problem with docs. No shame in that, many people are the same. That must be part of a bias such as those that you talk about so often. Could be true. I don't think it's personal though. I think doctors have a real problem. But then again that could be just my bias. Hard to determine it either way. You can't prove…

> My background should have nothing to do with what I'm talking about here.

You say: "I am a researcher in the field, so I'm more informed than most..." and then your background has nothing to with what we're talking about? Yeah sure, whatever...

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

#188
post #131
post #121

Earlier quoted context omitted.

We dont, but we act like we do - Most doctors will try SSRI first despite most knowing they only work for about a third and most doctors will refuse to treat depression using non SSRI antidepressant medication.

Doctors usually try SSRIs first because they are inexpensive, well tolerated in most patients, and often effective. If the patient doesn't respond then most doctors are willing to try alternatives.

SSRI have severe sideffects, but mostly of the kind that doctors strangely seem to think of as harmless, such as the well known and quite common loss of sexual interest, which kills quite a few relationships. Even worse there is growing evidence that it occasionally causes a permanent reduction or loss of sex drive. The group who self identify as asexual have almost all been prescribed SSRI as young teens, and this might well be causation, not correlation. After all, if you got SSRI as a kid and then never felt your sex drive before it was permanently lost, how would you know?

SSRI are almost mostly ineffective, with roughly 70% not responding at all. They were however heavily marketed as the patented, and very expensive prosac for decades and more importantly while they occasionally treat depression, they feel bad to use and are never used recreationally, and thus avoided the moralizing around drugs. Not to say the marketing wasn't needed, people were highly sceptical of using chemicals to treat depression, especially as people occasionally melted from serotonin storm before they figured out dosages and cross interactions. Doctors are restrictive in which alternatives they try, not because they are afraid of side effects, but because off label use requires personal responsibility, and is often against policy one way or other. Good alternative treatments include hallucinogens, in particular ketamine and peyote in large single dose treatments when not taken in a clinical setting but with friends. These have long been avoided despite good evidence they work astonishingly well for depression. This is partly because of the war on drugs propaganda and moralizing, but mostly because these hallucinogens cannot be patented, meaning its not worth the price for the large manufacturers to do the marketing to overcome the anti drugs propaganda. Its not random chance that they are currently trying chiral variants, partial ingredients and various anti hallucinogens and treatment schedule combinations of these, despite all evidence so far indicating its all worse than the well studied plain unpatentable medicine. Another example is Amphetamines which in typical doses prescribed to children with adhd treat the primary observable downside of depression i.e. low energy, low focus, loss of work, reduced activity, etc. Unsurprisingly, the subgroup of depressives which respond well to exercise roughly a third, respond very well to treatment with amphetamines. As anyone who ever considered maybe working out, but not really wanting to, and then took amphetamines will tell you. With amphetamines, its almost certainly not a direct treatment of the depression, rather it facilitates changing habits in such a way that a common pathway out of depression is more likely to be taken. They have a significantly increased likelihood of suicides compared to hallucinogens, but the effect is comparable to that of SSRI. The main sideeffect of therapeutic/low doses of amphetamines is weight loss, a mostly desired outcome. So excluding people with easily tested for heart problems and trivial to identify anorectics, why not try it... Well its war on drugs propaganda again...

Doctors have a nasty habit of thinking they should make the judgement regarding the tradeoff between various treatment, instead of presenting the options to the patient and letting them decide. But the real problem is idiotic moralizing around "drugs :O".

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