The Chronic Illness Debate Is More Mainstream — But Still Mysterious, NYT

BrightCandle said:
Its worth a read. All the usual medical gaslighting because the poor boy was seeing demons and monsters and such, got multiple psychiatric diagnoses, lots of hard drugs to control that didn't do anything but it came alongside some physical symptoms too and the MRI when the dad reviewed it even showed signs of an infection. After wasting 100s of thousands and institutionalising their son and him only getting worse they went to a functional medicine place that actually tested him for infections, he had stretch marks which were red angry suggestive of Bartonella henselae bacterial infection and sure enough treatment for that did result in him recovering completely.

So like we are used to medicine couldn't be bothered to investigate, slapped on some psychiatric diagnoses and just left the kid to rot because nothing helped at all and that didn't bother a single one of his physicians whatsoever.

The author of the times article here has the much more common Lyme and led with the physical symptoms and even that required him to diagnose himself. The author is big on talking about the fringe of Mystery illnesses. But where we don't exhaust the primary possibilities of diagnostics, and pursue the oddities where they lead, they aren't really mysteries in the way this guy is describing, they are examples of medical negligence. Bacterial infections are pretty common, hallucinations absolutely possible since many drop neurotoxins and the tests are widely available to find evidence of an infection and its then about which one. Lyme, Bartonella henselae and the recent Strep A infections are all fairly common and a basic immune system check will show something is up and then its about digging to identify what. I know from my own experience the doctor saw immune function like I was fighting something, still true 10 years later but they have never bothered to look at what.

Something Long Covid sufferers have recently been recommending is to get the actual results yourself. Don't accept the doctors "all is well", because in a lot of cases there are things wrong on the blood tests/MRIs and they just aren't being told. Again nothing mysterious about the illness, just more medical negligence and gaslighting.
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Wow, ok. I've had the Bartonella "stretch-marks" myself. I still went to the gym when they started occurring, when I got out of the shower some guy asked me wtf was on my hips, I thought it were actual stretchmarks from working out to hard and growing to fast. Which was funny because I still looked like a stick-figure so the guy told me that can't be right. Took about 7 years to get that actually diagnosed.

I started feeling better with treatment but dropped off a cliff again when exerting myself too much. The bartonella looked gone on tests and my hips had cleared up to the point where the marks went from a bright purple to skin-toned, which for me is RAL 9010.

Something was still off in the bloodworks, but it was unclear what. In 2019 I discovered it to be Borrelia Miyamotoi and Relapsing Fever. I'd put my recent improvements down to combatting that, but I can't be sure.

Tick-bite diseases usually come with co-infections from what I've been told and have read, but diagnostic tools are severely lacking and treatments even more so. So I'm gonna have to see if my current situation is just a purple patch or that something did change definitively.
 
BrightCandle said:
After wasting 100s of thousands and institutionalising their son and him only getting worse they went to a functional medicine place that actually tested him for infections, he had stretch marks which were red angry suggestive of Bartonella henselae bacterial infection and sure enough treatment for that did result in him recovering completely.
Click to expand...

It is dangerous to paint functional medicine doctors as the heroes of medicine. They are usually quacks that run a large number of nonsensical tests (often from private labs they get a cut from that give false positives) and prescribe nonsensical treatment regimens.

If the story is true the kid had an undiagnosed bartonella infection - it is unfortunate that he happened to come across so many incompetent physicians in a row. But for every complex patient that gets "figured out" by a functional medicine doctor (and it is never something that a normal doctor couldn't figure out!) there are dozens that are ripped off and prescribed ridiculous 30 pill regimens with nothing to show for it. This idea that you can figure out an illness like me/cfs or autism by seeing a functional medicine Dr has been tossed around for years and it honestly just makes us look crazy. As usual, positive anecdotes like this one are touted as evidence and the negative ones ignored.
 
Thanks for sharing. Quote from the article:

"But the stereotype of people refusing to accept a mental health diagnosis seems like an odd fit for contemporary American society. From our ever increasing rates of antidepressant prescriptions to our therapeutic style of spirituality, neither our medical system nor our culture writ large seems meaningfully resistant to psychiatric diagnoses or mind-body treatments. If anything, the medical system’s bias often runs the other way: If your blood tests come back negative or your symptoms don’t yield a simple diagnosis, you’re very likely to be told to consider seeing a mental health professional, and most people who like and trust their own doctors (which is to say, many people) will follow that advice."​
 
Jaybee00 said:
Functional medicine is a pseudoscience.

https://sciencebasedmedicine.org/fu...ests-in-one-hand-a-huge-invoice-in-the-other/
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“Functional medicine” preaches the “biochemical individuality” of each patient, which is why one of its key features is that its practitioners order reams of useless lab tests and then try to correct every abnormal level without considering (or even knowing) what these abnormalities mean, if anything.
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Enough said then.
 
BrightCandle said:
Functional medicine contains quacks but it also contains diagnostics focussed doctors for odd diseases. In this case what happened is they saw a doctor who actually examined the patient and did tests based on the patients symptoms and then followed up the odd aspects in the tests to find the real cause. All the prior doctors either jumped straight to unexplained with psychotic drugs or dismissed the problematic test results. The functional medicine is largely irrelevant, they finally saw a competent doctor who looked for a reason for the persons ill health instead of treating them with prejudice. Almost every other doctor they saw committed some form of medical malpractice and showed serious incompetence.
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So ILADS-doctors for example would fall into the category too?
 
Solstice said:
Wow, ok. I've had the Bartonella "stretch-marks" myself. I still went to the gym when they started occurring, when I got out of the shower some guy asked me wtf was on my hips, I thought it were actual stretchmarks from working out to hard and growing to fast. Which was funny because I still looked like a stick-figure so the guy told me that can't be right. Took about 7 years to get that actually diagnosed.

I started feeling better with treatment but dropped off a cliff again when exerting myself too much. The bartonella looked gone on tests and my hips had cleared up to the point where the marks went from a bright purple to skin-toned, which for me is RAL 9010.

Something was still off in the bloodworks, but it was unclear what. In 2019 I discovered it to be Borrelia Miyamotoi and Relapsing Fever. I'd put my recent improvements down to combatting that, but I can't be sure.

Tick-bite diseases usually come with co-infections from what I've been told and have read, but diagnostic tools are severely lacking and treatments even more so. So I'm gonna have to see if my current situation is just a purple patch or that something did change definitively.
Click to expand...

Oh wow. I've had big scratch lines across my upper back (from sides around should blades almost) for years, with them being really obvious when I've showered.

I assumed it was something itching me at other times and it was just the showering that made them more obvious
 
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