4 ms·

This is amazing and really needed in the northern US and Canada. It is also great they speak to the chronic lyme condition because many people get accused of it

by bentt 1y ago

This is amazing and really needed in the northern US and Canada. It is also great they speak to the chronic lyme condition because many people get accused of it being psychosomatic or even false (similar with long Covid). Their theory of it being bacterial remnants in the liver is validating.

ixtli 1y ago
Its sad that we needed to have a partially avoidable mass death due to COVID in order for people to start considering these chronic conditions more broadly in society. People have been having these issues for generations.
- bentt 1y ago
  I mean, sure. But some things are just really complex and the root causes are very, very difficult to pin down. There was a lot sad about COVID, but like 4000th on the list is how it revealed the human dynamics that lead to chronic diseases being overlooked because science has no valid explanation for what's happening to patients. I say this as someone who suffered from Lyme Disease for a number of years.
- agos 1y ago
  look at it the other way: we got a couple of unexpected silver linings from the COVID hell. one is attention to these chronic conditions (finally!)
  - bentt 1y ago
    Yes! It's vital that we continue to look for opportunities in the midst of such a crisis.
- almosthere 1y ago
  Now everyone agrees, experts are just normal people that have built a bias towards one ideological thing or another. Long COVID? (looks up "party" stance)... that doesn't exist. Eat Apples.
Aurornis 1y ago
> It is also great they speak to the chronic lyme condition because many people get accused of it being psychosomatic or even false (similar with long Covid). I have a friend who worked in research for rare, chronic, and misunderstood diseases for a few years. Post Treatment Lyme Disease Syndrome (PTLDS or just PTLD) is well accept by now. The problem they encountered was that so many of the people who presented with "Chronic Lyme" diagnoses were either self-diagnosed from the internet or diagnosed by uninformed primary care doctors who used it as a catch-all for symptoms they couldn't diagnose. Many had never received positive test results, or they had received positive test results from cash-pay alternative medicine labs who used their own in-house alternate tests. It was really depressing to hear stories about people who had been misled into spending tens or hundreds of thousands of dollars on things like year-long courses of expensive, IV antibiotics for a condition they most likely did not have. Even the idea of a persistent infection hasn't held up to scrutiny. The current line of thinking is shown in this article, where persistent particles of past infection might cause ongoing immune-related symptoms. Those symptoms would not respond to the high-dose, long-term antibiotic therapy pushed by the alternative medicine Lyme treatment providers, obviously. So while it's a difficult topic, having some better mechanism to separate the verified Lyme cases from the self-diagnosed or those wrongly diagnosed is actually very important for improving acceptance of the condition. It's tragic that many with persistent symptoms of true Lyme infections have been dismissed, but it's also tragic that many with non-Lyme conditions have been misled into thinking that "Chronic Lyme" is the explanation for all of their problems contrary to the evidence. Getting the latter group out of the "Chronic Lyme" mindset and on to a path where their true underlying condition can be addressed, whatever it may be, is a win for them.
- Fomite 1y ago
  This. It's been very hard to separate out "Chronic Lyme Disease" as an unfalsifiable self-diagnosis from "Lyme Disease That Which Has Chronic Sequelae", which is fairly well accepted by most infectious disease doctors I know.
- spondylosaurus 1y ago
  I tested positive for Lyme once because it was one of those "first line" inaccurate tests that can get thrown off by the presence of unrelated inflammation. I knew it was a false positive because I'd never stepped foot in territory with Lyme-carrying ticks, but a doctor insisted on testing me anyway, and then the false positive sent me to an infectious disease specialist who did a more reliable test and concluded that the first one was wrong. Had I been less skeptical, it would've been very easy to conclude that I had "chronic Lyme". Thankfully I knew better than to take the first test at face value and kept pushing for answers to find out what was behind the results-warping inflammation. But there have to be too many people out there with very real symptoms and problems who are misled into clinging to bullshit answers.
wyager 1y ago
I had an interesting run-in with chronic (-ish) illness. I got some random flu-like virus in late 2019 (I don't think it was covid, although I was living in HK at the time). Whatever it was, it really screwed me up and left me with a bunch of weird symptoms (e.g. dizziness/vertigo) that had me pretty incapacitated for a few months. Thankfully the symptoms abated eventually, but doctors couldn't really find anything and none of the diagnostic tests turned up anything that interesting. Ultimately they thought it was probably minor viral encephalitis, but the diagnostics for this are quite bad, so no confirmation either way. You can't really convince doctors that you're not the kind of person with a propensity for imagined symptoms (probably a lot of hypochondriacs tell them that), so there's not really anything you can say to argue when a doctor implies you're just imagining things. That and other experiences made me realize: A) diagnostic technology is really quite poor (e.g. at the time, only one lab (one of the UC schools, I forget which) was even theoretically capable of testing for encephalitic viruses outside of 2-3 very common ones, and all of the tests had ridiculous limitations on e.g. sensitivity window) B) most doctors really overestimate their own intelligence, and they act accordingly C) you and your friends/family are the only ones who (can afford to) actually care about and put serious effort into your medical outcomes. If you actually want to get good medical results, you basically just have to diagnose yourself and convince some doctor to go along with it without triggering their sense of superiority

by bentt 1y ago

ixtli 1y ago

Its sad that we needed to have a partially avoidable mass death due to COVID in order for people to start considering these chronic conditions more broadly in society. People have been having these issues for generations.

bentt 1y ago
I mean, sure. But some things are just really complex and the root causes are very, very difficult to pin down. There was a lot sad about COVID, but like 4000th on the list is how it revealed the human dynamics that lead to chronic diseases being overlooked because science has no valid explanation for what's happening to patients. I say this as someone who suffered from Lyme Disease for a number of years.
agos 1y ago
look at it the other way: we got a couple of unexpected silver linings from the COVID hell. one is attention to these chronic conditions (finally!)
- bentt 1y ago
  Yes! It's vital that we continue to look for opportunities in the midst of such a crisis.
almosthere 1y ago
Now everyone agrees, experts are just normal people that have built a bias towards one ideological thing or another. Long COVID? (looks up "party" stance)... that doesn't exist. Eat Apples.

Aurornis 1y ago

> It is also great they speak to the chronic lyme condition because many people get accused of it being psychosomatic or even false (similar with long Covid). I have a friend who worked in research for rare, chronic, and misunderstood diseases for a few years. Post Treatment Lyme Disease Syndrome (PTLDS or just PTLD) is well accept by now. The problem they encountered was that so many of the people who presented with "Chronic Lyme" diagnoses were either self-diagnosed from the internet or diagnosed by uninformed primary care doctors who used it as a catch-all for symptoms they couldn't diagnose. Many had never received positive test results, or they had received positive test results from cash-pay alternative medicine labs who used their own in-house alternate tests. It was really depressing to hear stories about people who had been misled into spending tens or hundreds of thousands of dollars on things like year-long courses of expensive, IV antibiotics for a condition they most likely did not have. Even the idea of a persistent infection hasn't held up to scrutiny. The current line of thinking is shown in this article, where persistent particles of past infection might cause ongoing immune-related symptoms. Those symptoms would not respond to the high-dose, long-term antibiotic therapy pushed by the alternative medicine Lyme treatment providers, obviously. So while it's a difficult topic, having some better mechanism to separate the verified Lyme cases from the self-diagnosed or those wrongly diagnosed is actually very important for improving acceptance of the condition. It's tragic that many with persistent symptoms of true Lyme infections have been dismissed, but it's also tragic that many with non-Lyme conditions have been misled into thinking that "Chronic Lyme" is the explanation for all of their problems contrary to the evidence. Getting the latter group out of the "Chronic Lyme" mindset and on to a path where their true underlying condition can be addressed, whatever it may be, is a win for them.

Fomite 1y ago
This. It's been very hard to separate out "Chronic Lyme Disease" as an unfalsifiable self-diagnosis from "Lyme Disease That Which Has Chronic Sequelae", which is fairly well accepted by most infectious disease doctors I know.
spondylosaurus 1y ago
I tested positive for Lyme once because it was one of those "first line" inaccurate tests that can get thrown off by the presence of unrelated inflammation. I knew it was a false positive because I'd never stepped foot in territory with Lyme-carrying ticks, but a doctor insisted on testing me anyway, and then the false positive sent me to an infectious disease specialist who did a more reliable test and concluded that the first one was wrong. Had I been less skeptical, it would've been very easy to conclude that I had "chronic Lyme". Thankfully I knew better than to take the first test at face value and kept pushing for answers to find out what was behind the results-warping inflammation. But there have to be too many people out there with very real symptoms and problems who are misled into clinging to bullshit answers.

wyager 1y ago

I had an interesting run-in with chronic (-ish) illness. I got some random flu-like virus in late 2019 (I don't think it was covid, although I was living in HK at the time). Whatever it was, it really screwed me up and left me with a bunch of weird symptoms (e.g. dizziness/vertigo) that had me pretty incapacitated for a few months. Thankfully the symptoms abated eventually, but doctors couldn't really find anything and none of the diagnostic tests turned up anything that interesting. Ultimately they thought it was probably minor viral encephalitis, but the diagnostics for this are quite bad, so no confirmation either way. You can't really convince doctors that you're not the kind of person with a propensity for imagined symptoms (probably a lot of hypochondriacs tell them that), so there's not really anything you can say to argue when a doctor implies you're just imagining things. That and other experiences made me realize: A) diagnostic technology is really quite poor (e.g. at the time, only one lab (one of the UC schools, I forget which) was even theoretically capable of testing for encephalitic viruses outside of 2-3 very common ones, and all of the tests had ridiculous limitations on e.g. sensitivity window) B) most doctors really overestimate their own intelligence, and they act accordingly C) you and your friends/family are the only ones who (can afford to) actually care about and put serious effort into your medical outcomes. If you actually want to get good medical results, you basically just have to diagnose yourself and convince some doctor to go along with it without triggering their sense of superiority