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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

#151

Post by rscho »

the_only_law wrote: post #139

> A couple of days after returning to Marin, the family met with a chiropractor in San Francisco who specialized in the treatment of neurological disorders. I must have a huge misunderstanding of what a Chiropractor is. I had always known them in the context of treating back pain and spinal issues, but more recently I’ve been hearing stories of chiropractors being seen for anything a “real doctor” won’t consider.

Because in the US, chiropractors have been elevated to near-MD-level and can even pursue MD residencies. Which has to be the greatest scandal in the history of medicine. And then americans come and tell you that their docs are the best on the planet... Go figure.

They can be good surgeons, though.

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

#152

Post by BrandoElFollito »

It is somehow of a side comment, but I always wondered why there is no CAM - Computer Assisted Medicine. The kind of program where you would input everything you checked (either physical exams, or quantitative information such as blood tests results, heart rate etc.)

In winter, a typical result from this program when someone comes with a sore throat, pain in the joints and headache is "flu" - at 98%.

But there is 1% left for parasitical infection of pythonus golangus, which can be extra tested by doing this and that.

And then the next 10 possible illnesses, extremely low probability.

What this could avoid is that an MD who is human and has zillions of patients with the same symptoms is helped to target something else either when there is something uncommon, or the typical treatment si not as effective as it would be.

I am a physicist by education, and IT by work. All what we do is more or less reproducible and it is extraordinarily uncommon that a bug is due to a cosmic particle hitting the CPU rather than a forgotten semicolon.

I believe however that biology is much more unpredictable, with a ton more parameters and an MD may have not heard about an illness (or have forgotten) so reminding them about the possibility could be enlightening (and direct the gut feeling they may have otherwise).

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

#153

Post by mybrid »

This disease has a striking resemblance to the history of Lyme's disease transmitted by ticks. The symptoms last for years. The original bacteria is treated with antibiotics and cleared up. Ongoing treatment of antibiotics can help with the symptoms. Just as with Lyme's disease, the scientific community has been dismissive of patients suffering with long term affects.

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

#154

Post by Sainth »

bigcorp-slave wrote: post #14
kevmo wrote: post #3

Earlier 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…

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 cramps, hot flushes, cold hands and feet, and I have some episodes of euphoria, panic attacks and paranoia. Same as you I have some days where I feel just fine.

I have had the same experiences as you when it comes to doctors, they do a lot of tests, the tests come back inconclusive and then they just shrug. At least I have a nice GP that says that he has no clue what is wrong with me but that something is definitely wrong.

So far we have done a lot of blood work, various urine and stool samples, CT-scan and MRI of abdomen. The only thing they have been able to find so far is slightly elevated noradrenaline/norepinephrine levels (three times) and some cysts on my left kidney.

The elevated noradrenaline could be because of a pheochromocytoma (adrenaline producing tumor), but when I have done the 24-hour urine test for that it comes back negative.

The only thing that I have found to work is to eat a low tyramine diet which seems to greatly reduce the symptoms, though not completely remove them.

It might not be the same as you are having problems with, but I do see a lot of similarities.

My email is in my profile, let me know if you want to compare notes.

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

#155

Post by rscho »

BrandoElFollito wrote: post #152

It is somehow of a side comment, but I always wondered why there is no CAM - Computer Assisted Medicine. The kind of program where you would input everything you checked (either physical exams, or quantitative information such as blood tests results, heart rate etc.) In winter, a typical result from this program when someone comes with a sore throat, pain in the joints and headache is "flu" - at 98%. But there is 1%…

Medicine of today is still more art than science. Although we strive towards what you describe, there are enough poorly defined variables involved in diagnosis to make CAM pretty much useless. A major cause of that is the information requirement. People will describe and interpret findings differently, making reporting useless. Trying to directly measure things will stumble across very complex issues of calibration, etc.

Actually, all the current hype goes to AI/ML/automation, but the real priority would be to improve data collection. Unfortunately, it's less sexy and much harder. Old-school docs still have good times before them.

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

#156

Post by bigcorp-slave »

Sainth wrote: post #154
bigcorp-slave wrote: post #14

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…

Yes, definitely. I will email you after work today. I have also been evaluated for a pheo with negative results - the sudden panic attacks out of nowhere seem to trigger this diagnostic pathway.

I will try to reduce dietary tyrannies - that is a good idea.

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

#157

Post by bigcorp-slave »

Miner49er wrote: post #126
bigcorp-slave wrote: post #14

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…

Have you been checked for any autoimmune diseases? Sounds like it could be something like Celiac disease. From what I've seen, most of those are potential Celiac symptoms. But I imagine other autoimmune diseases could also cause these types of symptoms. This graphic [0] shows some potential Celiac symptoms. A guy surveyed a bunch of people with Celiac for their symptoms and listed the symptoms given more then once. T…

That is an interesting proposal. I do have one autoimmune disease, that from reading the entire body of research literature is not known to cause a large majority of my symptoms. But I do hear that autoimmune diseases travel in herds… will look into it. Thank you!

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

#158

Post by bigcorp-slave »

cgio wrote: post #107
bigcorp-slave wrote: post #49

Earlier quoted context omitted.

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.

Thought you might have checked already. Wish you the best, I know first hand how such a combination of symptoms can feel debilitating but you obviously do all you can about it and that’s the most important thing.

Thank you.

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

#159

Post by nomel »

jhrmnn wrote: post #91
deltaonetwo wrote: post #53

Earlier quoted context omitted.

This is ingenious and a incredible way to display how illogical a doctor (and people in general) can be. It's completely obvious that the doctor isn't going to really read the paper (he's too busy). You just present a paper and suddenly the doctor will trust you more. Literally it's deference to Authority being employed by the doctor here; nothing going on with rationality or logic. Don't present a single logical arg…

Science is built on deference to authority. You cannot possibly derive all known physics laws yourself, or verify all the known biology yourself. You have to trust to a certain degree all the scientists that came before you, collectively. You can question some bits here and there but you don’t have time to question everything. The doctors cannot possibly evaluate all the arguments brought in by patients, they don’t h…

And, related, “ A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it.” -Planck

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

#160

Post by appleflaxen »

the_only_law wrote: post #139

> A couple of days after returning to Marin, the family met with a chiropractor in San Francisco who specialized in the treatment of neurological disorders. I must have a huge misunderstanding of what a Chiropractor is. I had always known them in the context of treating back pain and spinal issues, but more recently I’ve been hearing stories of chiropractors being seen for anything a “real doctor” won’t consider.

Chiropractors are a pseudoscience that managed to blur the line enough in legal and popular perception that the general public thinks they are doctors.

Imagine if a psychic was considered equivalent to a financial planner.

The fact that they might be right from time to time is inevitable, and is definitely somewhat of an indictment on the mainstream providers that they need to.

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