This stupid country just lets people fucking die and get disabled everyday. I’m sick of it. My tax dollars just go to killing and dismembering people abroad. Fuck fuck fuck.
I guess I will be the sole person to point out that “chronic Lyme” is viewed by the medical establishment as a pseudoscientific diagnosis. Not really interested in debating this but lotta people have no idea that it isn’t considered a legit thing, so for our readers here ya go. Not to diminish peoples’ suffering from whatever it is they’re going through but it probably is not caused by being bitten by a tick several years ago.
The same medical establishment that only recently admitted that chronic fatigue syndrome was real and not something women were making up for attention? The same medical establishment that ignores and gaslights those of us with “invisible illnesses”? (I’ve been told my disablity isn’t real by a doctor before and so have many others!) The same medical establishment that treats different races differently due to racist nonsense thats still taught in med school? The same medical establishment that does conversion therapy (torture) on autistic children?
Good thing they’ve never been wrong or caught lying before.
Sure now do this analysis on the alternative medicine community
Reminds of me of trans healthcare. It’s the Wild West in a lot of ways simply because doctors don’t give enough of a shit to “properly” do advanced studies of things. Like, we know the basic tools are safe, but a lot of bigger questions about medical patterns you fit, how longer term HRT might affect the body in one way or another, it’s a big unknown space, but a lot of doctors just shrug and ask what you really are and stop thinking there.
Like even something that’s sorta becoming a common treatment, like Progesterone still gets slapped with like “unverified” smears, despite years of reports through the grapevine, because again they can be added to actually do official research.
When I was closeted I heard some friends of mine at the time in med school joke about trans people, and basically say they taught absolutely nothing about them. Among other hurtful thing.
TRUE
Lyme disease is a real thing but usually (especially in “left” context) when someone says “lyme” there is a 90% chance that is NOT what they are talking about. It’s a conspiracy theory promoted by anti-science grifters to entice people to travel to spend weeks or months at retreats getting long term antibiotics infusions or whatever else.
The suffering on the ground is real but total misdirection. It’s kind of like the satanic panic or something.
I posted recent recent clinical practice guidelines, this stuff is addressed in there. They know its fake.
AFAIK lyme disease has a pretty good prognosis assuming you have access to health care. And if you don’t that is a different thing and whether “they” do know how to treat it or not, doesn’t matter much to you .
I guess I will be the sole person to point out that “chronic Lyme” is viewed by the medical establishment as a pseudoscientific diagnosis.
The idea that disease infections can cause permanent organ damage and ongoing health problems even after the disease itself is gone is, bafflingly, something that’s only started being accepted since covid started doing that on a big enough scale that researchers a) had no choice but to acknowledge it, and b) started getting a little funding to go and look to see if other diseases also did that sort of thing as well (they do, it’s just covid is particularly bad about it and also extremely contagious).
To add a bit more context: Its not as simple as “chronic lyme is fake”, because literally like 10% of lyme disease cases will have lingering symptoms after treatment. To distinguish it from quacks who say anyone with vaguely similar symptoms must have chronic lyme (even if there’s no evidence they had a lyme disease infection in the first place), scientists refer to it as PTLDS (Post-Treatment Lyme Disease Syndrome).
If the person actually had lyme disease to begin with, it may well be PTLDS symptoms, and may well be helped by a second course of antibiotics. If they didn’t actually confirm it was lyme though, or the lyme infection was years ago, it’s way more questionable. Their symptoms probably aren’t fake but they may well be getting taken advantage of by quack doctors, and making their health worse by continuing to take antibiotics for extended periods of time, etc.
Yeah “chronic Lyme” is not a real illness. Lyme disease is very much real obviously, but not chronic Lyme, which is usually used by quacks to sell snake oil, or as an excuse by celebrities to disappear from the limelight for a while.
lymelight
“Why don’t people go outside anymore?”
Your outdoor cats and pollution killed all the birds, your cars and traps killed all the possums and now the grass is filled with ticks which will give you a horrible illness if they bite you
Which they will because ticks are icky
i used to go outside to stack rocks but that’s illegal now
Release tick eating animals and start killing more deer
Release tick eating animals and
start killing more deerstop killing wolves and coyotes. Also ban cars and glass facades
We feed an outdoor cat. And also family of possums and a family of raccoons. Haha. Tons of government spy drones flying around all day too I feel rather content knowing I have some tick killers around.
there used to be a vaccine for lymes disease that was like 80% effective but it wasn’t profitable so now we don’t get it
they give it to pets. it’s the same vaccine. the costs of getting through regulation for humans was too much and not worthwhile.
people who think vaccines are a money making plot needs to get get their heads screwed back on. so many vaccines held back because of being insufficiently profitable.
people who think vaccines are a money making plot needs to get get their heads screwed back on. so many vaccines held back because of being insufficiently profitable.
Doesn’t that necessarily mean that the ones that aren’t held back are profitable?
Meh. Not much. None of the companies really want to do it anymore. Vaccine development is just not compatible with capitalism. Remember that even mass vaccination campaigns are generally only 1-5 lifetime doses. Behind every newly-scheduled vaccines (something that happens every 5-10 years) there are 1000s of research avenues that went nowhere, or nowhere lucrative. They cost to develop, test, deploy etc. And the benefit is dispersed, in the future, and not obvious to individuals. A quintessential collective good; must be done at scale.
Look into the Ebola vaccine: it was 90% ready to go for a decade and almost ended up in the same situation as the Lyme vaccine: abandoned because no pharmaceutical business (or military) was willing to pay for the costs of the final approval processes. There is FINALLY a malaria vaccine.
If vaccines were developed as ambitiously as they could be imagine what we could have them for: acne, UTIs, ear infections, common cold, STIs, cold sores, h pylori, MRSA, c diff, parasites, a real TB vaccines, HepC, HIV etc. And that is just thinking about life here in chilly first world nations. Last few years have seen an uptick of finally approved vaccines for tropical diseases like chikungunya and dengue fever which is great.
none of that shit will be profitable
Or theres a “treatment” that ends up being a subscription plan on your lofe thats even more profitable.
I hope China can put them all to shame to the point the world can ignore it and our companies are forced to assimulate.
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lol I mentioned that just down the thread.
My understanding is that development was encouraged by the US military because they were worried about bio terrorism. The September 11 Never Forget anthrax attacks were not yet totally forgotten about. There was a case where a critically ill man flew to Texas(?) where he was admitted to hospital, staff didn’t realize they needed to follow strict contact precautions, and a nurse contracted Ebola which she died of. As did the patient. It caused a panic because people realized Ebola may not be confined to “over there” and worried what if extremely sick Africans started coming to the US maliciously?? They could go to the mall or anything and infect all kinds of people. So it became salient to actually develop a vaccine to this disease because now white/wealthy people could be at risk. It became a a National Security issue and military $$$ got involved.
So researchers that had been toiling away for decades suddenly got an influx of money and attention. Since a lot of the groundwork was already done, they quickly developed a vaccine which was effective in humans. But when it came time to finalize the approvals by like filling in the forms, dotting the
is, crossing thets, doing the final study, resources were pulled. Americans weren’t afraid of Bio Terrorism any more. Now that the problem was back to only affecting Black people in Africa it didn’t seem to be a priority so who cares.I remember hearing about this in the time between the development of the vaccine and its approval. Scientists saying “we have this, its ready to go!” Of course they are trying to court favor with people more powerful than themselves, not be firebrands, but the frustration was very clear.
In many ways the story is the same as the Lyme vaccine. Ebola is a way worse disease 10000x but why should we have any diseases?
And people think too many vaccines is the conspiracy. Hey everyone: it’s too few vaccines.
(Not even starting about distribution.)
Thought I read they’re in stage 3 of trials for a Lyme disease vaccine now. Idk, too lazy to look up the legitimacy.
there was one in the 90s that got to market and was withdrawn 4 years later after a couple (seemingly unrelated) reports of arthritis symptoms after taking it
And lymes can cause joint pain anyway
I wish we could go in the woods without fearing for our health. As I begin to understand the ecological causes of the proliferation of this and other diseases like Chronic Wasting Disease in America, it is setting in for me that American settler colonialists and later iterations of land developers seriously destroyed the balanced of North America’s ecosystem.
When touching grass backfires
Assuming you are talking about actual Lyme Disease, it’s a bit confusing because there seems to be a fairly well established treatment protocol. Here is oodles of stuff about it.
2020 Guidelines for the Prevention, Diagnosis and Treatment of Lyme Disease by Infectious Diseases Society of America, American Academy of Neurology, and American College of Rheumatology
- A summary guideline for clinicians (PDF)
- Update for family practitioners and other non-ID docs Lyme Disease: Updated Recommendations | AAFP
Spongebob might mean chronic lyme, which IIRC is dismissed by most doctors without further investigation.
might mean
so you think that people who are on the internet talking about “chronic lyme disease” are so dumb they don’t even know the difference? that they haven’t even bothered to educate themselves about rudimentary things like the meanings of words individual words?
hmm
But Ya fake diseases are not generally given a lot of attention. This question has been reviewed on a collective level and found to be without substance as a general matter. There is no investigation to do.
A person’s actual complaints ought to be taken seriously by their responsible provider. If there is an actual physical pathology, these fake ass diagnoses are only distractions that delay treatment.
https://www.niaid.nih.gov/diseases-conditions/chronic-lyme-disease
https://sciencebasedmedicine.org/does-everybody-have-chronic-lyme-disease-does-anyone/
https://quackwatch.org/related/lyme/
ETA: linebreaks between links
so you think that people who are on the internet talking about “chronic lyme disease” are so dumb they don’t even know the difference? that they haven’t even bothered to educate themselves about rudimentary things like the meanings of words individual words?
I think somebody could easily conflate the two and use the shortened version, especially if they’re not the person with the disease and don’t know better.
But Ya fake diseases are not generally given a lot of attention.
Not an expert or anything, didn’t know it was considered fake. I’d just heard it mentioned in the past, and given that there are diseases with confirmed long-term persistent symptoms (polio, COVID, I think chickenpox?) I assumed it was valid.
https://www.niaid.nih.gov/diseases-conditions/chronic-lyme-disease https://sciencebasedmedicine.org/does-everybody-have-chronic-lyme-disease-does-anyone/ https://quackwatch.org/related/lyme/
Imo this link you gave doesn’t really support dismissing chronic lyme as fake. It does report that prolonged antibiotics usage does nothing to help, but then at the bottom clarifies that there are non-human tests being done to see if infection does persist in some way after the course of antibiotics.
I take issue with the idea of inherently trusting doctors to always know best when many are generalists and just don’t know things (see how doctors have reacted to the “end of COVID” when it’s still having random surges), to say nothing of the long history of dismissing patient claims (especially of minorities and women). For a personal example my aunt had to go to 3 different doctors to get the tests to determine that she had endometriosis. Imo we may as well believe that those reporting to have “fake” diseases usually do have real symptoms, even if they’re wrong about the causes. All of this is complicated by fake doctors plugging fake treatments, obviously, but it’s easy to see how people end up there when the medical system seems to fail them. It’s probably not helping that our healthcare is brutally expensive in the US which predisposes people to look for alternatives (most of which are indeed quackery).
confirmed long-term persistent symptoms (polio, COVID, I think chickenpox?) I assumed it was valid.
post polio syndrome, long covid and shingles. all real. All preventable with vaccines. :) PPS poorly understood due to wide spread vaccination especially in wealthy countries = few incentives to study it. (Actually we should have eradicated polio by now.) Shingles now has a specific vaccine for those already infected with chickenpox (98% of adults).
see how doctors have reacted to the “end of COVID” when it’s still having random surges)
how have they reacted?
well I tried to find out on my own here is what I found. It’s from 2022. Knowledge and experience of physicians during the COVID-19 Pandemic: A global cross-sectional study . Kind of come ci come ca
Most physicians (87%) revealed a good level of knowledge while only half (54%) reported adhering to adequate preventative measures. More than half of participants (56%) indicated that the policies implemented to handle COVID-19 by their public health agencies were insufficient or disorganised.
trusting doctors to always know best when many are generalists
So in the comment you replied to I posted 3 documents. The primary one was published by Infectious Diseases Society of America, American Academy of Neurology, and American College of Rheumatology. Those are organizations of specialists, not “generalists”.
But also included 2 documents that were aimed at non-specialist doctors to provide context about what those people might have available to them. They are shorter, less comprehensive overviews of the current state of knowledge for someone who needs to brush up quickly. Like a family doc who sees something once in a long while. And they are more accessible to someone who doesn’t want to spend all weekend reading journal articles. Like most of Hexbear I assume. Between the three of them I think they provide a response to the claim “they don’t even know how to treat it”.
1 of those was published as a supplement to the full guidelines by the same authors, and the other by American Academy of Family Physicians (AAFP), which in the US is the organization that sets the standards your family doc is held to. In any case, they (and all other similar publications) are all in full alignment with the longer guidelines because there is no question about “chronic lyme disease” in the conspiracy meaning of the phrase.
or a personal example my aunt had to go to 3 different doctors to get the tests to determine that she had endometriosis.
Well that sucks. :( Endometriosis is notorious for this sort of diagnostic delay. One thing to consider is that the test required to diagnose is a surgery and we also don’t want doctors sending everyone to surgery at the drop of a hat. It does make sense to proceed through a diagnostic process starting at less invasive/risky. There are opposite problems in medicine where this isn’t adhered to. Example: Extremely high levels of c-sections which do not have any benefit and carry a lot of risks. (Especially in facilities which pay more for c-sections! big time correlation.)
If you are interested, for the sake of comparison to the above, [here is the AAFP about dysmenorrhea (painful menstruation, which would have been the symptom your aunt went in with) to see the different things they would be considering. and on endometriosis specifically. They have some other interesting-looking stuff on the subject in the sidebars but unfortunately pay-walled >:( Maybe can find on libgen scihub ebookee etc if motivated. Or also Clinical diagnosis of endometriosis: a call to action - American Journal of Obstetrics & Gynecology for a specialist viewpoint. Comparing these to the lyme disease documents it’s clear that endometriosis and “chronic lyme disease” differ substantially: one exists and the other is fake. There is zero dispute about the existence of endometriosis.
if interested in a much+++++ more nuanced look at the question of the effects of individual and collective experience of health care on trust of doctors (et al) I would suggest Harriet Washington’s Medical apartheid : the dark history of medical experimentation on Black Americans from colonial times to the present
Imo we may as well believe that those reporting to have “fake” diseases usually do have real symptoms, even if they’re wrong about the causes.
When people talk about “chronic lyme” they are making specific claims about a pathogen, pathology and treatments. Which are false.
I am not arguing about anyone’s symptoms. Which we have no idea what those might be in the case of “so many people I know” other than they “fucking die and get disabled”. Virtually nobody dies of lyme disease. We got 99 preventable causes of death but “chronic lyme” aint one of them. The context leads me to be extremely skeptical of claims re disability.
So in the comment you replied to I posted 3 documents.
Shit that’s my bad, they were inline so my brain just saw them all as a single link. As you say, the other two are definitely more for the layperson and specifically argue against CLD’s existence. A re-read of the NIH link also led to me noticing something important in the first section I’d missed on the first read-through, where they explicitly state that “CLD” is not to be used because it’s quackery, and so serious study should use the term “Post Treatment Lyme Disease Syndrome”. That’s also definitely on me, and I find it very frustrating that they’ve had to change the language used to distinguish from the quackery when both terms sound interchangeable without knowing more.
The primary one was published by Infectious Diseases Society of America, American Academy of Neurology, and American College of Rheumatology. Those are organizations of specialists, not “generalists”.
I think you might’ve misunderstood me, I was referring to the family doctors an individual will interact with. While the bodies of guidelines and research they should be pulling from are legitimate, stuff like that stat of 46% of doctors failing to take appropriate COVID precautions (in 2022, I’d guess it’s much lower now) doesn’t inspire confidence in the ability of those individual doctors to properly interpret the facts when interacting with patients.
I think our perspectives on the medical system are mostly in agreement, but I was ignorant on this topic, which led to me being more willing to take OP’s word uncritically. Thanks for all effortposts!
Well I used to believe in “chronic lyme” and various other stupid shit. Ask me in 2044 and I’ll tell you what fake ass shit I believed in 2024.
I added extra line breaks in one comment. sorryislurredmyurls. I think the top comment with the lyme guidelines is clear enough though probably no one is clicky cklicky. (Weirdly no comments from OP surprised that there actually is treatment for lyme disease.)
Re the doctors: come ci come ca. But the family doctors, the ones you will meet out in your life, should be at least vaguely aware of the AAFP stuff. They actually don’t consider themselves “generalists”, but rather specialists in family medicine and participation in AAFP is a key part to that. So those people are in receipt of this information. Obviously YMMV. I am not aware of any front line profession that doesn’t struggle to adhere to adhere to COVID guidelines. But again to contextualize there is no controversy about whether COVID exists. Need to keep things in scale.
Lyme’s symptoms mimick other things like Alzheimer’s and fibromyalgia, making diagnosis difficult some times. Sometimes you need a ‘Lyme Literate Medical Doctor’ who specializes in tick borne illnesses to diagnose Lyme’s.
Early stage Lyme’s is treatable with NSAIDS and doxycycline antibiotics, comrade. According to a family member who is a FNP in Lyme territory, even the later symptoms are treatable.
I’m genuinely asking, is it a failing of Uncle Sam or a failing of medical science? I get the impression it isnt the government but I’m also a pretty dumb kind of guy so
fibromyalgia
iirc fibromyalgia isn’t a specific thing either, just “lol chronic pain we can’t figure out” but the insurance companies need a formal category to pay out
Yeah. Fibromyalgia is “you have pain, we don’t think you’re just drug seeking, we’re not investigating any further.”
I just skimmed a Harvard Health article that broke it down to a failing of the economic system, which in turn led to a medical failing due to lack of research / lack of time to diagnose. The article ends by saying that the organization of affected people and local doctors could lead to increased care.
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would this be unlikely for those who’ve never experienced any noticeable symptoms after a tick bite?
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That’s horrifying schizophrenia is worse than tinnitus you’re gonna hear a demon man yelling insults at your door at 4am and knowing for sure it’s fake won’t make it stop
I’ve heard that’s seemingly a western thing with the disease. Which for some reason makes me feel stronger about the Lyme disease causing it haha
on the one hand, ticks carry lyme disease
on the other hand, ticks carry a disease that makes people allergic to red meat
apparently some people all meat.
forced feminization but for veganism
I mean, the red meat thing is just one factor. It’s a whole slew of other issues that come with the disease, but meat allergy is clickbaity. Arthro Pod did an episode on it, I believe.
??? how many people do you know are getting bitten by ticks
Not OP, but around here, getting bitten by ticks is very common. Almost everyone I knew who liked being outdoorsy had been bitten at least once, and usually had several tick-bite stories. If you don’t do a thorough tick check after every hike or jaunt into weeds or woods, you’re playing roulette and will get one before too long. I myself have had to pull ticks out of me probably around 10-15 times (mostly as a kid when I was less careful when out hiking).
edit to add: Even when you’re careful, ticks can still be easy to miss and you can still get bitten. The little fuckers are notorious for how sneaky they can be. I didn’t mean the above to imply that someone who gets bit is at fault for not being careful enough, because it still can happen sometimes even when you take precautions, it just becomes much less likely.
This is why I always wear long pants and shirts while on a hike. Learnt this lesson as a 15 year old during a 3 day 60km hike. Our group all got bitten by ticks sometime on day 2, walking though tall grass in shorts and short socks.
doesn’t literally everyone who spends any time in a woodsy area gets them?? i got bitten like 6 times a year as a kid and got a couple last year
Bafflingly, I have never gotten a tick despite being in situations where everyone else does. Mosquitoes love me though :( (leeches and ticks seem to avoid me idk why)
might be a regional thing, i looked this up and am deep in the blue:
can’t really say this is clearly indicative of tick bites overall since i think our ticks are just more infected, but it’s probably a combination of both
I’m a fellow mosquito magnet. I’ve pulled one deer tick off my after a whole lot of hiking (and literal thousands of mosquito bites regardless of what measures I try to take against them)
Never gone wading through the bayou to see how leeches like me though
In Australia I’ve spent some time in more tropical areas (Queensland), no leeches, including just faffing about in swamps and stuff. Also just slept on the ground in more semi-arid areas (SW WA), and gotten no ticks despite everyone else getting them. On the other hand, people have spotted me with a cloud of mosquitoes around me, and I’ve gotten over 300 in one night. idk what’s going on
I got lime about month ago, it’s not fun.
