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online, stumbled upon chronic lyme community at least on 2 different forums(i believed i had lyme one time as i had encountered with a tick but wasnt bitten years before, until i realized most of them had some sort mental issue going on) because i was suffering from some unusual neurological conditions, which lyme may cause.
they believe lyme isnt curable according to them and can explain any range of symptoms, even if its not related to lyme. plus they believe it is endemic in other countries where lyme doesnt occur. and any tick species can carry it. like they believed every skin rash that may look like a bullyesys as a sign of lyme.
they also ended up harassing and issuing death threat against the ACTUAL infectious disease specialist who discovered lyme, because he was contradicting chronic lyme believers. and mostly its midwestern white women who believes this stuff. now to that end, theres a whole industry apparently furthering the delusions. now draws in all sorts of people.
Lyme doctors, naturopaths will try to prey on people by convincing them to take a lyme specific test from a well known questionable company that makes these blood tests. and then they have the LYME mds prescribe them actual Long term antibiotics, months or years on it. they believe the side effects is causing is treating the "chronic lyme" symptoms. at the same time they also take supplements "extraction from plants" as supplemental treatment, again it causes unknown side effects, so they think its treating it. they are getting constant thrush infections, from the ANTIBIOTICS. and the lyme mds, also dont take insurance, red flag here. thier family members have reported, some of them suffered some permanent neurological damage from taking antibiotics for too long, or some wierd plant supplement. and guess which politics they side with.(and this was pre trumps 1st term). very dangerous as it involves MDs preying on people, prescribing them actual meds to things they may not have. and furthering the delusions of "chronic lyme" people.
also any attempt to confront or question chronic lyme will draw thier ire.
basically health conspiracy.
It's chronic fatigue syndrome, which can be triggered by actual Lyme, but hangs around after whatever illness has been cleared from the body. They mistakenly think it's still a bacteria in there. The antibiotics help their symptoms because a broad range of antibiotics act as a strong anti inflammatory in ways current NSAIDs don't, so it feels like it makes them better. The bladder pain community I'm in deals with the same crap of people thinking they have a permanent 'embedded infection' and there are people who take antibiotics for years.
Chronic Fatigue Syndrome/Long Covid is real, though. Probably some autoimmune shit going on. Women are notoriously ignored in medical studies and are more likely to have autoimmune disorders.
When no one helps you, you cling onto the first bullshit that make sense. And let me be clear on how there is absolutely no help for chronic, weird symptoms as a woman. You slowly just start to lose your mind as your life falls apart and no real doctor will offer anything but vitamin D and antidepressants. (It was endometriosis. I had undiagnosed endometriosis for 20 years no one gave a shit about).
if you try to confront them , or tell them it something else they become very hostile to you on other sites, they will legit stalk you on the site you critcized them with facts and hound you, its basically a cult so to speak. its more like psychosomatic illness or delusional parasitosis.
They have an illness destroying their life (even if it's not the one they think it is) and they've found a medication that actually makes them feel better. Everyone tries to take this medication away (antibiotics) without providing anything else effective in it's place. It's understandable why they're hostile.
CFS\Long Covid isn't solely psychosomatic in the cases where an illness triggered it, that's autoimmune.
There's no good options for them right now outside of social support, but they certainly don't get that in my country either. So I get why they're absolutely hostile and just leave them be.
since they dont know what they have(so csf is not even on the table for them), they dont seek out 2nd opinions and just attribute all thier symptoms to "chronic lyme", because its an "LYME DOCTOR" convincing them.
Wait. Is chronic Lyme not actually a thing? There are quite a few long/chronic types of things I'm aware of that are quite real, but also still not super well understood. I assumed Lyme was in there with those. Real, but more of a side-side-effect of a disease that breaks something in weird ways for different people.
Chronic lyme is pseudoscience, its the belief that "lyme" isnt curable. but people dont attribute the neurological damage from lyme as a sequelae or the fact that there a bunch of other diseases that cause symptoms similar to lyme. so they seek out LLMD to give them confirmation biases(LLMD are unethical asf, but thier MD license arnt in danger.) by the way, chronic lyme was coined by a mom, like with other fake diseases, and they also lean into anti-vax a bit. almost any posts about lyme on any forum/video, always have someone chiming in to look into the Chronic lyme. there was an episode of monsters inside me, about lyme i think the official channel deleted the video as it was drawing unnecessary attention,
the problem is these people also seeing UNETHICL MDs who prescribe them questionable blood tests and antibiotics, which as you know if you take abx too long it can cause THRUSH infections, and neurological problems, like peripheral neuropathy. since these docs usually dont take Insurance, because eitherthey know insurance will try to investigate fraud, or whatever, they CHARGE BY THE HOUR, USUALLY hundreds.
lyme, if you leave untreated long enough it causes syndromes similar to RA, and other neurolgoical diseases, which can be long term or permanent. what the CL people believes is this is a permanent infection. also as a note they dont believe in Infectious diseases specialists too,.
Wow thanks for that follow up info. I had no idea. I also looked it up some and read a few things in it. Hard to know what is accurate or true, but yeah. It makes a lot of sense that it is the untreated infection leading to neurological damage and it's that neuro damage that is mistaken for an ongoing infection. I can see how people would believe that.
Sad that it's being taken advantage of too, ugh.
I remember being TERRIFIED of getting Lyme as a kid because there was this kinda perception/belief in permanent illness or severe damage and all that. Not that Lyme isn't dangerous or deadly, but good to know it's not some spooky forever mystery disease.
remember the scientist who discovered lyme, was stalked, harrassed and had death threats against him, he had to get private security. he was also saying theres no such thing as CHRONIC lyme. its basically a cult with an industry behind it. like someone said it likely it some other disorder, like CF or a mental component. if you dont live in lyme "country", or unless you were near there but dint see a tick or anything, ubt a telltales bullseye rash.
It's just chronic fatigue syndrome.