All fucked up and I make it look good

lyme disease is caused by the bacteria Borrelia burgdorferi, which is transferred to humans via blacklegged tick bites (1,2). ticks can actually carry all sorts of diseases, so i've seen it recommended lots of places that you should keep any tick you find feeding on you just in case. blacklegged ticks can bite and transfer the bacteria either as adult females or nymphs. The nymphs are especially dangerous because they are the size of a poppyseed and people don't notice them. i think this latter scenario may have happened to me, as i do actively check for ticks on account of they scare me LOL

anyway, the most classic sign of lyme disease is a bullseye shaped rash at the bite site, called erythema migrans, which can appear 3-30 days after the bite. HOWEVER, i learned recently that many Lyme disease rashes do not look like that! they can also look like this (source here with the photos bigger):

in fact, some people NEVER develop a rash! and other early stage lyme symptoms are super nonspecific: chills, fever, aches, fatigue, etc. like, there's hundreds of illnesses that can also cause that. so one of the issues in the field is that lyme is hard to diagnose, and then the late stage symptoms are scary. lyme if left untreated can affect your heart, your nervous system, can cause arthritis, all sorts of scary things.

so what's the treatment?

the recommendation for early stage lyme disease is a 10-14 day course of antibiotics. studies have repeatedly found that longer courses of antibiotics do not increase clearance rates of the bacteria and do increase risks of adverse affects from taking antibiotics (check the sources on this page for some examples). my understanding is the recommended procedure for doctors is, if a patient is presenting with the rash, could have been reasonably exposed to Lyme-carrying ticks, and the symptoms cannot be reasonably attributed to another cause, to just go ahead and treat with antibiotics. there ARE tests for Lyme disease, but they all have issues. the "gold standard" test is for antibodies, but it takes about a month for antibodies to build up in your body so false negative rates are high during the window when treatment is most useful. there's also PCR tests, but they seem to be most useful is limited contexts (3).

my experience going into a clinic was that the first question everyone i talked had was: "have you been hiking or camping recently?" (my answer was yes, and i DID find ticks on some plants along the trail. sigh.) then a doctor physically examined the rash, and we talked about other possible causes. since mine happened in a place on my body where i also place infusion sets for insulin, she thought cellulitis at an old site was possible, although the rash was more consistent with lyme (not hot or painful). since antibiotics would treat both, she gave me some.

i will say that when she first examined me, the doctor told me lyme was one of those disease that "resolve on their own" and i spent the time a guy took blood for some tests puzzling over how to tell her that was completely wrong. fortunately, when she came back to tell me her treatment recommendations, she prescribed exactly what the CDC recommended, so I think she did go double-check herself. I'm including this anecdote so you know that I completely understand that sometimes doctors make bad calls for various reasons. i've also seen people reporting that doctors made them wait for an antibody test before treating, or doctors not taking the rash serious (especially on darker skin)

now, another thing to know about lyme: a small portion of patients have lingering symptoms even after they've cleared the infection. think long covid. this is called "post-treatment lyme disease syndrome" (PTLDS). lyme disease researchers and specialists prefer this term over "chronic lyme disease" because the latter implies the bacteria are persisting (4).

so what's the conspiracy?

there seem to be multiple (like i found a rando tiktok about the US government engineering it on purpose?), but the rabbit hole i fell down today is just... an insane amount of misinfo on Lyme in general and also the very existence of "chronic Lyme disease."

you see, before i went to a doctor, i spent a long time looking at photos of rashes trying to figure out if i needed to go in at all. and so i ended up on some lyme disease subreddits. and then i noticed, there's all these really weird comments making really weird treatment recommendations. common trends:

recommendations for "protocols" by non-doctors (lists of supplements and diet recommendations, basically)

"herbs"

reminders to demand excessively long antibiotics courses from doctors. according to many random redditors, 10-14 simply won't work and you need at least 8 weeks

several people dismissing common big pharma labs and recommending specialized labs. one redditor even offered to "help" set up an appointment with their own lab (since the one a doctor might send you to is "rubbish")

constant talk about "lyme literate medical doctors," whose appointments are not covered by insurance but you can gets drugs and tests that ARE covered!

generally incorrect explanations of antibody tests, how antibiotics work, etc, but all said with great conviction and surprising similarity between users

insisting lyme is almost always transmitted with other pathogens and everyone has coinfections (this is possible but I don't think very common)

at first, i thought it was funny. we've also seen someone in the comments of something boldly diagnosing OP based entirely on vibes. but then it kept being on EVERY photo, and multiple people making the same sorts of comments too.

then i started looking around the subreddits more, and not just pulling up photos of rashes via google. types of posts i found:

people describing how they "cured" their "chronic lyme" after years of very complex diets, months on antibiotics, extensive herb usages, etc. and you can too!

posts complaining about how their doctor wants to do stuff like "get a scan of a part of the body that hurts" instead of "treating OP for lyme" and then all the comments recommend OP leave their doctor for a better LLMD (again, lyme literate medical doctor)

people describing symptoms and begging for recommendations on treatment, and then getting bizarre and unscientific answers. all of these stories have a reason they think the symptoms are caused by "chronic lyme" but none of them are like... hmm. listen, i do believe these posters ARE having symptoms, i just don't think the answer is "it's from lyme disease"

just truly heart breaking posts about mental health, filled with sympathetic comments making completely batshit recommendations for treatment

deep fixations on coinfecting pathogens, including one the CDC says has no evidence of even being transmitted by ticks. i know a lot less about these specific illnesses but i DO know a lot of the verbiage about coinfections is just inaccurate/wrong

so wtf was up with that?? i'm still investigating, but i read this article. apparently there's lots of "lyme specialty labs" opening up with their own "in-house protocols" which do NOT necessarily have accurate or useful tests for lyme disease and other tick vectored illnesses (5). as far as i can tell, such companies exist to prey on anxiety about illness and chatter about expanding tick populations and tick-associated diseases. i think one of the general side effects of increased public education about diseases like lyme is that while you do overall increase health outcomes, you do get more people who falsely self-diagnose and then potentially spiral over it

and lyme disease is the perfect storm for this, isn't it? the correlation between people with health anxiety and fixation on bugs as a source of uncleanliness is pretty high. lyme has very nonspecific but scary symptoms and ticks are common, so you can imagine almost anything might be lyme. PTLDS is real, and so are complications from late stage lyme if the infection wasn't caught in the rash stage (such as: if you never developed rash). throw in some bad doctors who don't want to work with patients on their symptoms, some MDs willing to pedal "lyme literate" treatments of months of antibiotics, and low-quality "lyme specialty" testing companies passing out false results.... it's a perfect storm

and of course, if you have a whole community of people backing up your fixations (they call themselves "lymies"), then it gets easier and easier to slip into conspiratorial thinking instead of entertaining anything medically sound. again, i'm sure the symptoms are real! i'm sure it's easy to find doctors who are assholes or unhelpful and hard to find effective treatments! but holy shit, do not trust anything anyone talking about "chronic lyme disease" says

conclusion