switch007 11 days ago

I got Lyme when I was 26 (in an area with it, after handling an animal famous for ticks). GP refused to believe Lyme could be a possibility. Eventually got a test (probably an inferior one, knowing our health service), which came back negative. But I had a bullseye rash, flu-like symptoms etc. I'm convinced I had it. I wasn't prescribed antibiotics because the test was negative

The 2 years following I had bad muscles pains - particularly in my wrists (I've been using computers since I was 12... never had RSI), bouts of flu-like symptoms/body aches, decreased mental ability. Can't really tell if I've still got residual issues what was getting older and my body generally falling apart more and more. Then again, since then, I've been to the GP for various symptoms and many blood tests coming back negative, time and time again.

I'm still annoyed by the GP denying even the possibility of it.

  • SOLAR_FIELDS 11 days ago

    I had a very similar story that I’ve shared on here before. I fortunately very much knew it was Lyme because I got it in Europe where the bullseye rash is much more common. My PCP, in his infinite wisdom, said it was a skin rash and wanted to refer me to a dermatologist instead. Why? Because he couldn’t be bothered to Wikipedia Lyme disease and learn that the European one takes 8 weeks to appear, and because the gestation time didn’t line up with his knowledge of American Lyme disease, well, surely it’s not Lyme disease, even though it was an extremely obvious bullseye rash right where I had gotten the bite. It didn’t matter to him that I told him that I had gotten it in Europe AND that I had looked it up and noted that the European variant takes longer.

    I live in Texas and I was lucky/smart enough to tell my PCP to piss off and walk into an urgent care where a nurse who was born in Maryland immediately diagnosed me and gave me antibiotics. If you get a tick bite do not ignore this. It will fuck up your life if you do. It’s insane your doctor didn’t just proactively prescribe antibiotics. The long term effects of Lyme disease are bad enough that it is absolutely something that is worth giving antibiotics for even if you aren’t 100% sure.

    The incident has made me have a pretty strong skepticism of whatever doctors say. I now know that you, and only you, are responsible for your own medical care unfortunately. It is insufficient to trust someone simply because they have the letters MD after their name

    • jvanderbot 11 days ago

      I suddenly had alopecia areata. If you don't want to Google it, there were coin-sized areas of my head spontaneously losing hair, starting with my beard.

      My GP said "this is not a health problem, if you want a fuller beard use rogain". I was embarrassed enough to go home and try to tough it out.

      Within 6 months the whole left side of my head was completely bare, except for splotchy outlines here and there. My right side had hair but it was spreading fast. I looked like a hyena. It was not a great experience.

      Went to a dermatologist, got steroid shots, and my hair grew back in a month.

      You get quotes for housework, apply to multiple jobs, test drive cars, but when it comes to health, we trust the first asshole with availability? Never again.

      • MichaelZuo 11 days ago

        Roughly half the doctors are below average and probably more than half of GPs are below average...

        • pridkett 11 days ago

          For a while I had a GP who did his med school in the Caribbean. He was fine. I knew he did it there.

          During one exam he asked me where I did my grad school. I respond and reflexively ask him and his response was “Blah blah school of medicine in The Grenadines. But the guy who graduates last in his class there is still called ‘Doctor’”.

          • SOLAR_FIELDS 10 days ago

            I would rather have the last in his class doctor from some Caribbean country that listens to his patients than the ego doctor at the top of his class at John’s Hopkins that doesn’t.

            • sizzle 10 days ago

              To add to that list, I’ll take the IMG doc over PA or NP mid levels that did a fraction of schooling compared to traditional medical school.

      • anthomtb 11 days ago

        You had not heard the phrase "second opinion" before this experience?

        • jvanderbot 11 days ago

          Even for HN, that's a tone deaf response to a thread of stories of mistaken trust in GPs

          • southernplaces7 8 days ago

            What's tone deaf about it? Should the comment offer hugs and kissing before offering obvious, practical advice that anyone at all can take?

    • sizzle 10 days ago

      Pardon my ignorance, but does antibiotics even do anything? I thought there was no cure once you’ve been bitten by a tick?

      What role does the antibiotic play?

  • thepasswordis 11 days ago

    I cannot understand why you wouldn’t get antibiotics. What possible risk could your doctor be imagining that would come from you taking antibiotics?

    Our approach to medicine is so depressing.

    • anadem 11 days ago

      About a year ago I had the same attitude to antibiotics as you, but a basic antibiotic prescription led me to develop a Clostridiodes difficile [0] infection. People need to be aware that C. diff is AWFUL, and can easily occur after antibiotic treatment. It's totally debilitating, can even kill you, and is difficult and expensive to treat, often recurring after treatment.

      I'm very fortunate in having a daughter who's a doctor, but had to use a $5,000 antibiotic to get cured.

      [0] https://www.cdc.gov/cdiff/what-is.html

      • dopylitty 11 days ago

        Antibiotics can be really awful for your body. So many very important things are done for us by our bacterial microbiome but some doctors give out these dangerous medications like candy even for viral infections with no indication of secondary bacterial infections. [0]

        The body is like a hotel for bacteria. Under good conditions the rooms are filled with bacteria that don't harm us and may provide useful services. But take a broad spectrum antibiotic and suddenly all the rooms are empty and ready for colonization by nasty bugs like C. diff.

        Antibiotics have also been a wonderful invention for preventing death but they should be used much more sparingly in humans and much more sparingly for agriculture.

        0: https://jamanetwork.com/journals/jama/fullarticle/2782166

    • Too 11 days ago

      Not handing out antibiotics left and right is a way to counter antimicrobial resistance, a serious threat to the bigger population if gone out of control.

      It should only be used when absolutely needed. Seeing how casually some use it is quite shocking. Lyme is serious and should of course be treated if it’s identified as such.

    • switch007 11 days ago

      The primary objective of the NHS is to save money, it can seem. Therefore they create policies that reduce costs, write advice on nhs.uk that results in lower costs, restrict access to tests/drugs etc.

      I DO understand the arguments about excessive diagnostics, antibiotics etc - but they certainly hide behind those arguments _a lot_.

      Honestly it is so stressful and time-consuming to get anything other than a basic blood test or an ultrasound for any kind of issue. They will happily gaslight you in order to dissuade you ("Lyme does not exist in this area of the country". "These links say it does". "No")

      There's a reason why private healthcare spending is on the rise ( https://www.statista.com/statistics/317868/private-healthcar... ) but AIUI private GPs leave a lot to be desired - they seem to be just for single-visit issues, and aren't included on anything except the most expensive private healthcare plans

      • zamadatix 11 days ago

        The price of (most first round antibiotics) is so low that it doesn't really make sense to avoid prescribing them from a cost avoidance perspective.

        • switch007 10 days ago

          It costs next to nothing for one person. A different policy that applies to a population of 67m is a different order of magnitude

          NHS policy isn't about the individual

  • giantg2 11 days ago

    "Eventually got a test (probably an inferior one, knowing our health service), which came back negative"

    This is fairly common, even with provider ordered tests.

    I know a few doctors that will actually send samples to two different facilities, or perfer one facility or test type over another due to fairly common false negatives.

  • acc_297 11 days ago

    Sorry to hear that a friend of mine could tell a very similar story it’s weird some doctors refuse to consider Lyme

IncreasePosts 11 days ago

Something to note for anyone in Lyme disease range: The bullseye is the stereotypical sign, but it is not necessarily going to show up 100% of the time. When I was diagnosed with Lyme disease in ~Y2K New Jersey, I had the bullseye rash, and the doctor called in the nurses to look at it because he had never seen one before, despite diagnosing a lot of people with Lyme disease.

  • eurleif 11 days ago

    Conversely, a doctor told my dad he couldn't have Lyme because he didn't have a bullseye rash. That resulted in a significant delay in treatment, and probably in permanent damage. I'm still mad about that.

    • mindslight 11 days ago

      That's a typical experience of the US medical system, where you're lucky if you get ten minutes before they start looking around for a broom stick to shoo you out the door.

      One should have some idea of what levers one expects a doctor to pull. If a doctor isn't really engaging with your problem, then push towards those. Obviously you can't directly ask for them but rather focus on the right symptoms to nudge them there. You have to tiptoe around their ego.

      And if you're wondering why you've got to learn to be your own doctor instead of relying on specialization of labor, well, welcome to our post-capitalist overfinancialized hellhole.

      Also for this particular topic, you can send a tick in to UMass for testing and they'll tell you if it has Lyme and many other diseases. There's a bit of a turnaround time so it doesn't work for primary triage, but it's sure nice to find out that you're definitely in the clear.

      • giantg2 11 days ago

        "You have to tiptoe around their ego."

        Only if you have a shit doctor. I've had to be an advocate for medical care of family members, and I've had a few doctors actually compliment me on being an engaged advocate for their treatment. You still want to be respectful and open minded, but some basic study of the condition/treatment/lingo can go a long way to them seeing you as an informed patient they are willing to work with.

        • mindslight 11 days ago

          I agree about self/family advocacy, and for sure some of the doctors one gets are engaged and good. I think doctors generally become less shit as the stakes go up (end of life, pediatrics, emergency triage, etc). The problem is getting them to talk about anything proactively before you get to that point.

          My comment was more along the lines of if you know you need Doxycycline for a tick bite and they're holding off, you can't just come out and request it. They'll play the 'expert', defending their ego that they aren't working as a mere rubric-following pill-gatekeeper, and tell you how they know better, even though they hand prescriptions out like candy in other contexts. Rather you need to emphasize the symptoms you do have, equivocate rather than ruling things out (eg the tick could have been on me all day or even multiple days), and focus on the less probable bad outcomes that you're ultimately trying to avoid.

          • giantg2 11 days ago

            "eg the tick could have been on me all day"

            Well, that's a problem. If it's only been one day, they aren't going to give it to you. It's only supposed to be past 72 hours. Of course they're not going to listen and they'll argue if you're pushing something beyond the guidelines. If you frame it differently, like you don't know if it's been on there for days, then they're more likely to work with you.

            I've actually had a similar tick issue for a child. There was no way of knowing for sure how long it was attached until tested in the lab. The doctor was still willing to prescribe the doxycycline when we explained the situation. There's also a state lab that will test ticks and give a report on whether the tick tests positive for about a half dozen diseases and also tell you how long it was attached. The doctor's lab could only test the tick for Lyme. He was genuinely interested in learning about this other lab from me even though I was not a medical professional.

            • mindslight 11 days ago

              My griping was more about the medical system in general. My one experience of going to the doctor for a tick was actually pretty good (my primary care doctor, who suffers from the standard push you out the door after 10 minutes and can't you go to the ER instead, but has otherwise been pretty agreeable). I think I told them I knew it was on me for at least 4 hours, but could have been 12, and they prescribed Doxycycline. So either the 72h guideline isn't standard, or there is room for judgement that makes sense to push for. Because personally, I'm not looking to gamble with long tail Lyme and I generally find length of time guidelines for stochastic events pretty uncompelling.

              • giantg2 11 days ago

                It's standard. Although in this publication they are going by engorgement. Doctors aren't that concerned with the details. It's unlikely they will get sued for prescribing doxycycline to a patient who doesn't have a known allergy to it, so why not.

                https://www.cdc.gov/ticks/tickbornediseases/tick-bite-prophy...

                https://www.cdc.gov/ticks/tickbornediseases/tick-bite-prophy...

                • mindslight 11 days ago

                  Is it really supposed to take 72 hours for a tick to begin feeding? The 72 hours in that link seems to be about whether it's within the window that prophylaxis would have an effect (although you seem to be acknowledging this?).

                  In my case the doc asked if the tick was engorged, to which I responded that I didn't know - I'm not a biologist that studies ticks and can't give such a judgement as a nice tidy answer. Which is getting back to my point about expectations - if the treatment was amputating my leg, then I'd want some professional judgement calls. But given that the output of the medical system was going to be either (doxycycline and blood draw for lab, or nothing), I'm going to push towards the former option given the lack of expected harm and overall lack of attention outside of these scarce 10 minute visits.

                  FWIW I think I got a full course of doxycycline, perhaps just to avoid breeding antibiotic resistant bacteria rather than for the tick bite itself.

                  • giantg2 10 days ago

                    The post exposure prophylactic treatment is actually only a single dose.

                    The 72 hours in the link is from time of removal. The 72 hours I reference is how long it typically takes for a tick to regurgitate into a host (it has to feed for some time before it regurgitates). The article referenced it as being engorged. The correct answer is in the middle. It takes 72 hours for the tick to regurgitate, but it could technically crawl off a dead host and on to you. But it's harder to identify if it's engorged. These facts led us to use the doxycycline while the lab confirmed if the tick was positive and how long it was feeding.

        • maxrecursion 11 days ago

          When you go to an urgent care it is a total crapshoot. I've seen some of the worst doctors ever there. One literally looked at my throat for 5 seconds, said I had strep, and went back to playing on his phone, they weren't busy I was the only person in there.

          I've had other misread tests for my kids, saying they had strep when they had RSV. But some urgent care doctors have been really good. I think the ratio is changing in the wrong direction though.

          • giantg2 11 days ago

            These were in a variety of facility types and there wasn't any real pattern for me.

          • sizzle 10 days ago

            Wait till they are all replaced by midlevel NP and PAs like is currently happening in hospitals everywhere. The quality of care is going to be even more fractured by their lack of education to med school trained docs.

        • astura 11 days ago

          How do you get a non-shit doctor? They are all shit in my experience.

          Any nowadays I can't see ANY doctor outside of an ER or urgent care visit.

          • giantg2 11 days ago

            Most of it's just by luck. Some can be by references or online reviews.

            "They are all shit in my experience."

            I don't know, maybe your area is bad, maybe you've had limited experiences, maybe you're a statistical anomaly. Or maybe the problem is on the other side of the relationship.

    • datascienced 11 days ago

      That makes no medical sense. Like you don’t have concussion because no bruise or something.

  • dabber 11 days ago

    I've had it three times as a kid and the most recent one didn't produce a "bulls eye" rash. I knew what it was by then and went to the doctor, symptomatic, telling them that I had limes, but they hadn't seen it before and told me I had the flu.

    I got a second opinion with blood work that came back positive for limes.

    So if you have "the flu" symptoms around a time you were had been running around grassy area where limes is a thing, ask for blood work.

    • astura 11 days ago

      It's "Lyme disease," named after Lyme, Connecticut (which, in turn, gets its name from Lyme Regis in England). Not "limes," that's a fruit.

      • cs02rm0 11 days ago

        Although Lyme Regis gets its name from the river Lim.

        (But yes, Lyme disease).

        • wddkcs 11 days ago

          And the river Lim potentially got its name from the Latin word for 'border'.

          • CPLX 11 days ago

            And the Latin word for border got its name from a hem stitch.

      • dabber 11 days ago

        Sure, but I'm not a doctor and anyone who is living in an area that I'm speaking to will understand what I wrote and those that don't (perhaps yourself included) might learn a new colloquial phrase given the context of the comment.

        • Freak_NL 11 days ago

          When writing about medical issues, spelling matters. If you don't like being corrected, then just ignore the helpful hint and move on. Doubling down on a typo is just weird.

        • parthianshotgun 11 days ago

          We aren't mind readers, tell us the context, is it a regional spelling?

        • astura 7 days ago

          Maybe you couldn't get treatment because you told your doctor you "had limes" rather than "are exhibiting symptoms of Lyme disease after a tick bite."

          Precision matters in medical contexts.

  • sn9 11 days ago

    For future reference, if you strongly suspect something specific and you have reason to believe your doctor is wrong in dismissing your concerns, you can double-check that they're following evidence-based best practices by looking up the issue on UpToDate. For example, you can look up Lyme disease and see how it should be tested and when it shouldn't be tested (for which there are very real reasons).

    It requires a fee to use, but it's not much compared to healthcare costs of missing a diagnosis.

    If you find they're being negligent, definitely print it out and show it to them or get a second opinion.

  • codingdave 11 days ago

    I also was informed by a doctor that the bullseye sometimes manifests as just a band around your waist. Think in 3D when asking yourself if something new on your skin is a bullseye rash.

  • Covzire 11 days ago

    Hard logic dictates maybe the other diagnoses were something else.

    • southerntofu 11 days ago

      No, Lyme disease is entirely treatable in the first days following the infection. You can get it multiple times and treat it every time.

      Once you don't treat it for a few days, you'll have it for life and that's when it gets nasty.

      • bregma 11 days ago

        This is untrue. Borelliosis is treatable at any time: it's caused by a spirochete very similar to syphilis. The second time I had it it was diagnosed about 10 months after infection began, and a simple course of 100 mg Doxycycline for 21 days was all it took.

        It's true that (a) sometimes an advanced case where the bacterial infection has spread to the brain requires a stronger intravenous antibiotic that will cross the blood-brain barrier and (2) the infection can cause permanent damage to the joints, heart, and even the brain. But the latter is no longer Lyme disease, it's just arthritis, heart disease, or brain damage and has to be treated symptomatically. You no longer have Lyme though.

newaccount74 11 days ago

What sucks about Lyme disease are the possible long term effects that an infection can have. Some people believe it's because of bacteria that stay hidden in your body, but I think the more likely explanation is an auto-immune reaction. There is no treatment for these long term effects. (It's called "post treatment lyme disease syndrome").

  • bbarnett 11 days ago

    Hmm. I know viruses definitely can hide in places, specifically muscle tissue but that sort of makes sense, as their reproductive strategy is to actually use cells to reproduce and such.

    But I guess there are all sorts of places for bacteria to hide out. One thing I've always wondered, is there were reports around 5+ years ago, of a "new organ" being discovered. This was some sort of layer of liquid below skin layers, which was never apparent after death. And it was only discovered as a result of improving capability to view our body while alive, in this case tech not really possible 30 years ago.

    https://www.scientificamerican.com/article/meet-your-interst...

    I guess my point here is, if bacteria were in the interstitium they could hide out in this organ, and it's massive if it exists. I've wondered about this, as I suspect some fungal infections actually live in the interstitium for fluid ingestion and to travel to alternate sites, but then actually poke through the skin for air/etc. It could give a better clue as to why some fungal infections are hard to fight.

    • atombender 11 days ago

      Adding to this, bacteria can form biofilms that are undetectable with blood tests. This is thought to be one way that streptococcal bacteria such as _S. pyogenes_ can stay around in the body for a long time, perhaps indefinitely [1].

      These biofilms become microcolonies of bacteria (in places such as in the tonsils) that can lie dormant and reinfect in cycles. People who experience recurring strep infections (i.e. strep throat or strep tonsillitis) are often advised to get a tonsillectomy.

      Additionally, strep is thought to be capable of inducing autoimmunity through a mechanism called molecular mimicry [2], and this mechanism been implicated in several diseases, including rheumatic fever and psoriasis.

      [1] https://www.ncbi.nlm.nih.gov/books/NBK333419/

      [2] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6684244/

  • pseudosaid 11 days ago

    it actually hides along the cell walls between movements. My mom had Lyme and I was born with it. at age 12 i saw on live video the Lyme in action.

    I got rid of Lyme via eastern medicine and a liquid oxygen shot daily. Lyme hates oxygen rich environments

    • DoktorDelta 11 days ago

      My partner is dealing with the same thing. Could you elaborate on the eastern medicine you used to treat your case?

    • newaccount74 10 days ago

      Well... there's also "chronic lyme disease", which is most likely pseudo-scientific bullshit. If you "saw lyme in action", chances are your mom took you to a quack doctor.

ajdude 11 days ago

> Lyme disease is transmitted by the deer tick, also known as the blacklegged tick. Other ticks, such as dog ticks, can transmit other illnesses, but not Lyme disease.

I've grown up dealing with all sorts of ticks, deer and dog, and I never realize that the latter did not actually carry Lyme disease!

  • IncreasePosts 11 days ago

    Yeah, it's unfortunate that the biggest, easiest to spot ticks are the ones that are mostly harmless, and the tiny elusive sons of bitches are the ones that carry a chronic disease.

acheron 11 days ago

It says to use DEET? No. Use permethrin (on clothes) and picaridin (on self).

  • vundercind 11 days ago

    Yes to permethrin, but beware it’s very dangerous for cats. Don’t spray your clothes anywhere near them. Maybe keep any clothes you treat with it in a room they can’t reach, or sealed in a container—I think once it dries it’s less-dangerous but I still wouldn’t want one to decide to curl up on a pile of them.

    • acheron 11 days ago

      Yeah I spray the clothes in the garage and let them fully dry out there. Everything I’ve read says once it’s dry there’s no issue, it’s only the liquid that’s dangerous for them.

  • Grazester 11 days ago

    I have been using permethrin on my clothes and DEET on my skin for the past 5 years when hiking in the New York state. Thankfully I have had no interactions with ticks or even seen any on my short trails despite the presence of wildlife.

  • hedora 11 days ago

    Why not use DEET?

    • eurleif 11 days ago

      Picaridin and DEET are roughly equal in effectiveness, but picaridin is safer for pets, and doesn't have a nasty habit of destroying synthetic fabrics.

    • huytersd 11 days ago

      Anecdotally it’s useless. I’ve seen them walk right over DEET sprayed boots. They freeze up pretty much on contact with permethrin.

aclimatt 11 days ago

Same story as a lot of people here. I got Lyme when I was in my early twenties. I had no bullseye rash and no evidence of a tick bite. And I lived in California which made it even more confusing.

Woke up one day with debilitating headaches (I never got headaches normally). Lasted for two weeks, doctor said I had "viral meningitis" which should clear up on its own. Coincidentally they did, and thought all is well!

Next week my elbow hurts. Then my pinky. Then my foot. Then my neck. Every day it would be a new obscure part of my body, until a month in I was in so much pain I could barely walk. For someone in their early 20s, this was debilitating.

The doctor comedy of errors continued. They said I had juvenile arthritis, which is a common misdiagnosis and an insane one considering how acutely this came on. She prescribed me steroids but I declined because I didn't trust her diagnosis (fun fact I learned later: steroids make Lyme worse and harder to treat). I got referred to a rheumatologist who likely would have continued down the same short-sighted path, but thanks to a modern medical miracle -- no appointments available for 6 months (!), that didn't happen either.

I was losing patience and time, so I started researching everything I could. I forced the doctor to run blood tests for everything possible, including Lyme, Rocky Mountain spotted fever, everything. She almost refused to give me the tests because "that's impossible! you've never had the bullseye and there are no ticks in California!" She even accidentally left the Lyme test off my lab sheet (??) which I only caught when I double checked the paperwork with a lab tech.

I was starting to lose hope thinking being nearly paralyzed would be the rest of my life.

And then the western blot came back positive.

48 hours on doxycycline and EVERYTHING disappeared. Over 3 months of debilitating pain, and all I needed was a pill of the most common antibiotic out there. Just wow.

I had to follow up with the CDC and an infectious disease specialist. So how did I get bit by a tick all the way in California? Turns out, I went camping near Boston a week before this all happened. I told the whole story to the infectious disease doctor (who grew up in the northern Midwest). His response?

"Classic Lyme"

Get tested for Lyme y'all. It's one of the most misdiagnosed infections out there. And if you have all the symptoms but test is negative and have been in nature, just take doxycycline. Not worth risking your life.

  • kldx 11 days ago

    Thank you for sharing your experience. I wonder if there's a course for non-medical professionals about common symptoms and what to look out for. My high school didn't offer one.

  • maxerickson 11 days ago

    Did you tell the first doctors you had recently been in the woods in MA?

    • aclimatt 11 days ago

      Yep that was one of my justifications for wanting to get a Lyme test. Their response: "well you never had a rash and don't remember being bitten by a tick so that sounds impossible"

rapjr9 11 days ago

There is a new way to treat your property:

https://lymeshield.com/

It uses the original Lyme vaccine (which worked but which was withdrawn because nobody was buying it) to treat mice. You put out a bait station and the mice eat the vaccine laden bait and it kills Lyme in the mice. Ticks overwinter on mice, so if the mice are immune the ticks also get immunized. It's not perfect but they claim a 75% reduction in Lyme in ticks. Lymeshield seems to only have limited release and requires a licensed pesticide expert to install the bait station (not sure why, it seems trivial, but that's the only way the are selling it, maybe to prevent people from trying to vaccinate themselves by eating the pellets?)

  • leobg 11 days ago

    In DE, we have “Zeckenrollen”. [1] They are filled with cotton material that mice will carry to their nest. And it’s treated with some tick killing substance.

    [1] https://zeckenrollen.de

    • rapjr9 11 days ago

      In the US we have Damminix:

      https://ticktubes.com/

      Same thing, it is indeed permethrin on cotton balls in cardboard tubes. I've used them for several years. They help but they aren't a complete solution. Another thing I've tried is to attempt to control mice (remove wood piles and other places they nest) which also helps a little. There are a -lot- of mice in the woods if you live in a rural area. The owls in the area help too by eating the mice. A neighbors guinea hens used to roam my yard once in a while. Nothing has worked as well as Met52 so far. As far as I can tell there are no federal or state attempts to stop the spread, the problem has just been growing year after year.

    • goda90 11 days ago

      Probably treated with permethrin. I've seen lots of guides about soaking cotton balls in permethrin and sticking them in cardboard tubes to place where mice might be nesting.

      • leobg 11 days ago

        Great idea. Those Zeckenrollen are quite expensive, especially when you have a large area to cover.

  • tikkun 11 days ago

    What's the pricing, if you know? I see a request pricing form, it doesn't state the info.

    • rapjr9 11 days ago

      I haven't been able to find out, it isn't offered by any of the licensed pesticide services in my area yet.

  • goda90 11 days ago

    Reminds me of efforts around edible rabies vaccines that they have dropped in the wilderness to vaccinate wild animals. The big hold up there is how to get the bats vaccinated too. I've seen some studies into vaccines that are designed to stick to the bat and that will spread to its friends while they groom each other.

    It would be great if governments put a bunch of effort into eradicating these diseases.

    • rapjr9 11 days ago

      I've heard of some experimental attempts to apply permethrin to the necks of deer using bait stations where the deer have to put their head+shoulders into a narrow treated area to get to the food. Doesn't seem to have seen commercialization.

keepamovin 11 days ago

A Lyme disease vaccine from Pfizer and Valneva is in a Phase 3 trial right now. We’re hopeful that the vaccine will be ready in 2025. The UMass Chan Medical School is also studying another potential therapy to prevent Lyme disease that is in clinical trials. This prevention is not a vaccine but a monoclonal antibody that kills the Lyme bacteria in the tick’s gut.

This is good news. I like the idea of the monoclonal antibody. What potential side effects for humans?

  • oliv__ 11 days ago

    Side effects? What are you a conspiracy theorist? /s

    • keepamovin 11 days ago

      Hehe. Oh to go back to simpler free thinkin’ times

qwertox 11 days ago

I did get Lyme disease. I had no idea that it was a thing because I did not get educated about it, not even about ticks. I was just fascinated by the bullseye and never went to see a doctor.

Sometime later I felt sick with fever and something like an itching inside the head, but since it went away, I never bothered with it again. I also never made a connection between this and the bullseye, maybe it was the cause.

I'm constantly wondering if it would be beneficial to talk to a doctor about it, but it was almost 25 years ago.

  • consumer451 11 days ago

    Similar thing happened to me. Got some bites, they went away. Didn’t think twice about it.

    A month or two later, I got very ill, it was Advanced Neurological Lyme disease.

    My vision loss was at about 30-40%, I still feel the arthritis all the time, but my vision is nearly entirely restored. One of the worst aspects was the cognitive loss.

    For months I suddenly had ADHD-like symptoms, and had brain fog like I had the biggest bender of my life, for months. My spelling/grammar went down the drain, I still just miss words when writing. I wasn’t able to work for a long time, and am still recovering financially from this stupid bug bite.

    Don’t mess around people, take prophylactic doxycycline dose.

    • consumer451 11 days ago

      I would like to point out that I did not have rings, just normal looking bug bites.

rpmisms 11 days ago

I'm incredibly fortunate to have never had a tick bite, but my wife has and got Lyme. Don't fuck around, go get the antibiotics immediately. If your doctor doesn't believe you, write a formal complaint to their board after finding another doctor.

  • armada651 11 days ago

    I did get a tick bite that I only noticed after three days. I didn't screw around and immediately went to the urgent care to get that thing removed by a professional. They also didn't wait for any kind of rash before giving me antibiotics given how long the tick was there. Lyme disease is no joke.

    • jakjak123 11 days ago

      Ticks are incredibly common. People in my area of the country get hundreds of ticks during their life. It's also fairly rare they carry Lyme disease and gets you infected. You definitively should not be given antibiotics without a clear reason.

      • armada651 11 days ago

        I'm guessing that having a tick for longer than 24 to 48 hours was a clear enough reason. I assume people who get hundreds of ticks will be checking more thoroughly and remove them within two days.

        I agree antibiotics shouldn't be prescribed without a clear reason. People are being prescribed antibiotics all over for things like the common cold and for some insane reason we're still putting antibiotics in farm animal feed.

        But it seems unethical to then take a gamble on whether someone contracted Lyme disease or not just to give the antibiotics we save from that gamble to someone with a runny nose. If we want to save antibiotics then we should test the removed tick for Lyme disease, not wait for symptoms to appear.

        • jakjak123 11 days ago

          We check for ticks every day you have been in the garden or just outside in the woods. Less than 2% of ticks carry Lyme disease, and there is even less chance you actually get a infection, and that the infection becomes a permanent infection. As far as I know, Lyme disease is not that dangerous, but the bacteria can enter stasis and "hide" in different parts of your body, until it suddenly becomes active again, then really blossom if you are weakened for other reasons. The point is just that there is a less than 2% chance of even getting a tick that is a carrier, even less chance you get sick, even less chance it ends up in the dangerous stasis state. One usually does not treat for Lyme, until enough of the symptoms have started showing.

          • quesera 10 days ago

            In a few (large) areas of the US, Lyme is endemic and most deer ticks are carriers.

            I've tested random samples from a few forests in the Northeast, and >75% came back positive.

      • switch007 11 days ago

        What would the "clear reason" be?

    • xorcist 11 days ago

      While it is good to take this stuff seriously, there's also no reason to scare people. Having lived in an area where ticks are common, I remove them weekly, if not daily, from myself and the children. There's no reason to be scared and there's certainly no reason to wait for a professional.

      There's a lot of advice in the Internet why these must be removed in a special way, with a special compound, or whatever. This advice has no scientific standing. Just remove it, with your nails or a pair of tweezers, and really make sure you remove all of it.

      In an area where tick borne diseases exist, be on the lookout for symptoms. Do not try to self medicate or take prophylactic antibiotics unless specifically requested by a physician or you get a rash a few days after. After all, not many ticks carry them. You are likely to be absolutely fine. Living in an area where Lyme disease is common, I've had it a few times and it is treatable with antibiotics.

      There are however other diseases that aren't as easy to treat. Encephalitis for example. If you think Lyme can be nasty, that one is downright bad. Take the vaccine where it exists.

      • armada651 11 days ago

        > Do not try to self medicate or take prophylactic antibiotics unless specifically requested by a physician or you get a rash a few days after.

        It was requested by my physician, I did not request them nor did I insist on being prescribed anything.

        > You are likely to be absolutely fine. Living in an area where Lyme disease is common, I've had it a few times and it is treatable with antibiotics.

        It is still a gamble on whether you will have clear enough symptoms in the short term to prompt an antibiotic treatment. Unfortunately unless you get the bullseye rash it's often not that clear that symptoms that appear much later are related to the tick bite.

  • halfmatthalfcat 11 days ago

    I’m going to find a doctor to confirm to my diagnosis and try to get every doctor who disagrees with me reprimanded or fired along the way!

    • rpmisms 11 days ago

      I'm going to find a doctor who will admit a real disease exists and actually consider it as a possibility. Many don't, and it's irresponsible. Report irresponsible doctors. They aren't hurting for cash.

    • financetechbro 11 days ago

      Did you read the other comments? Lots of people giving anecdotal of doctors misdiagnosing their Lyme disease. It is a very valid concern

      • halfmatthalfcat 11 days ago

        No I opened this post with my eyes closed, picked a random comment and responded.

        My point isn’t that misdiagnoses don’t happen, they happen for a lot of things other than Lyme, but the fact that people will take vengeance on doctors when the detection of Lyme is unpredictable (tests only really detect it within a certain timeframe of infection), the ambiguity around symptoms and their relation to Lyme, and the historical baggage around Lyme in general, makes it a very hard problem for medical professionals to give definite recommendations and or treatments.

        • rpmisms 11 days ago

          I'm a little tired of hearing excuses for medical professionals. Too many real issues are dismissed out of hand, and it's wrong.

hahajk 11 days ago

I'm super concerned about the new longhorned tick that was recently found in eastern states. It can reproduce asexually and spreads fast. Scientists are still figuring out if it can transmit Lyme to humans (it can at least carry it).

A terrifying sentence: "It is common to find hundreds of ticks on one animal"

https://www.dep.pa.gov/Business/ProgramIntegration/Vector-Ma...

Contax 11 days ago

Why is it that every time I read something like this my whole body feels itchy? Or when I read about lice I feel an urge to scratch my head? Like, is there a term for this? Some article?

  • oneepic 11 days ago

    Maybe a stress response? Any pain or sensitivity?

  • ron0c 11 days ago

    It's called feeling 'ticklish'.

rapjr9 11 days ago

There was a fungus that you could apply to your yard which killed ticks. It was called Met52, made by Novozymes. They appear to have sold the rights to it to Lallemand:

https://www.lallemandplantcare.com/en/usa/products/product-d...

https://www.lallemandplantcare.com/wp-content/uploads/2023/0...

https://www.lallemandplantcare.com/wp-content/uploads/2023/0...

https://www.lallemandplantcare.com/wp-content/uploads/2023/0...

The above specimen sheet does mention use against ticks. Also if you look up the old Novozymes safety sheet it mentions use for tick suppression (pages 4 and 5):

https://evenspray.com/wp-content/uploads/2021/04/Met52_EC_la...

I had Met52 applied to my yard just before it went off the market for use against ticks and haven't seen a tick since. Possibly the fungus has taken up residence in the soil, though I still take precautions since Met52 protection was not supposed to last forever and required periodic reapplication. You can still buy Met52 and Lallemand's version:

https://www.evergreengrowers.com/m52-lalguard.html

https://www.planetnatural.com/product/met52-ec/

I have not been able to find any information about why it is no longer advertised for use against ticks. The pesticide specialist I hired to do my yard says Met52 was discontinued because no one was buying it (not enough profit). It's still widely used against a variety of agricultural pests in greenhouses and on farms. It's supposed to be very safe, it is not a poison and it targets only specific pests, though the application instructions say the applicator should wear a high quality pesticide style respirator when applying it (breathing lots of spores does seem like a risk and maybe the liquid the spores are in is toxic).

I am NOT recommending anyone try applying it themselves. Talk to a licensed pesticide specialist if you want to make inquiries about it. It could be an option for some people. It appears to be available in most of the USA.

heelix 11 days ago

Our kid was lucky enough to have the bullseye mark on her skin when she came down with a massive fever. Had not thrown out my medical microbiology college texts from the late 80's and sure enough - the picture matched up. She ended up getting some pretty serious antibiotics.

I really, really wish there was a human vaccination available for lymes. We treat our jacket and pant legs with permethrin when we are in heavy wood. That makes a huge difference for the normal wood ticks, so has become part of the normal routine.

chickenchase-rd 11 days ago

in a pinch I rub black pepper or thyme (hopefully a fine powder) everywhere and on clothes.. (I think thyme tests higher as a repellant for ticks and BPepper for mosquitos).

rub it between your hands to heat it a little to activate the oils inside and apply liberally.

Just remember - do not do it casually at social situations and be wary of staining your clothes and triggering an alergic reaction on yourself.

  • effluvium 11 days ago

    Sounded like BS so I looked it up.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9886999/

    "Figure 1d and Supplemental Table S2 show the complete protection times (CPTs) measured using the EPA procedure (tick on-arm assay) for different formulations. The organic lotion base provided no protection from tick crossings. The 10% lotion formulations that provided the longest protection from tick crossings were cinnamon oil, clove oil, 2PEP, and geraniol with CPTs longer than one hour. The formulation with 10% thyme oil displayed a CPT of 55 min, while the rest of the formulations tested did not provide CPTs significantly different from the untreated and unscented lotion controls. Our positive control, 10% DEET in unscented lotion, provided protection for up to six hours, at which time we stopped the experiment."

reify 11 days ago

How to prevent Lyme disease this summer?

Not been out since covid. Looking a bit like skeletor but thats OK.

I mean, is there anywhere safe these days.

You could catch anything out there. All those viruses and germs in the air and people breathing on you.

Now I can catch lyme disease off of those sneaky sneaky Ticks living in the long grass.

Thank heaven I dont go out.

I wont catch that bugger!

The new staying in! Dont go out!

  • newaccount74 11 days ago

    The article is pretty clear: wear long sleeved clothes, tuck your pants in your socks, check your body for ticks when you get home.

    Ticks are dangerous, but if you are careful the risk is low.

  • treflop 11 days ago

    As far as I know, Lyme disease is much worse than COVID and most other common diseases that you can just catch randomly.

  • rapjr9 11 days ago

    A neighbor caught a tick borne disease (not Lyme) even though she took precautions. The tick came off a tree onto her head and she didn't notice it there. So consider all attack angles.

    Watch out for West Nile also!

    • danieldk 11 days ago

      FWIW ticks generally don’t jump from trees, which is a common misconception:

      https://wgme.com/amp/news/i-team/ask-the-i-team-do-ticks-jum...

      If she didn’t notice it, it’s more likely the tick got on here from grass tips or bushes and worked its way up.

      • bregma 11 days ago

        This. They crawl around on you for a couple of hours looking for a nice quiet warm moist place to tuck in, which is why permethrin works. Also, they like quiet warm moist places. Yes, especially there.

      • rapjr9 11 days ago

        Maybe, but that's what she told me. She was wearing treated clothes and footwear. Maybe she was gardening or something and had her head closer to the ground.

huytersd 11 days ago

Just go to your PCP and get your one time course of 2 doxycycline pills as soon as you get bitten.

I also spray my hiking/yardwork pants and boots with permethrin. DEET is pretty useless, I’ve seen them walk right over DEET sprayed boots onto my pants. They make it about 5 steps through permethrin. I’m surprised advise from Harvard is getting this wrong.

If you want even more protection, you can buy stocking like slacks and a shirt specifically made for this purpose on Amazon. I wear these when I’m weeding or clearing brush.

All the above methods haven’t failed me in 5 years.

  • komatsu 11 days ago

    Taking antibiotics after every random bite is overkill. Antibiotics overuse is a serious issue for your body and for the general antibiotics resistance as well.

    When the tick is attached less than 24 hours it won't transmit Lyme disease according to the CDC. I check myself every evening after outdoor activities, remove 10-20 ticks every year and knock-knock never had Lyme disease yet.

    I wasn't aware of the permethrin effectiveness though. Thanks for letting us know.

    • lencastre 11 days ago

      10-20 ticks every year??? I can’t imagine that and I often run in grassy fields (not tall grass) and at most I found 1-2 ticks on me or my kids.

      How do you get that kind of numbers in the first place?

      • someoneiam 11 days ago

        I think that is just what happens if you live in tick-dense areas and do a lot if outdoor activities. I take every precaution, and remove approximatively the same number of ticks per season. Some places are just like that. Once, I rested with my right hand against the ground, just a couple of seconds, and upon lifting it up I noticed around 30 ticks crawling on it.

        • sizzle 10 days ago

          This is disturbing what state? Where do you find the ticks hiding on your body?

      • bregma 11 days ago

        Why would you not believe it? It's normal where I live too. I definitely get dozens of bites every year and have been formally diagnosed with and treated for Lyme twice because it's pretty easy to miss one. Tick bites are very often completely painless and they often choose very discreet locations for their meal.

        Keep in mind tick season is March to June and September to December (although it started in February this year because of unusual weather). That's a lot of days with "1-2 ticks" and it adds up.

        • huytersd 9 days ago

          I’ve never had a tick bite I could miss. They form a blister and itch like crazy for a couple of days. I wonder if the inflammatory response goes away if you get bitten too often. I know it happens with mosquitos if you get bitten too often.

          • bregma 8 days ago

            I get a strong reaction after I remove the tick (like a little necrotic volcano that itches like mad and takes about 18 months for the blemish to disappear completely). While the tick is there, I usually feel only nothing and find them by inspection. Tick checks are your best defence.

      • xorcist 11 days ago

        Absolutely normal in areas where they are common. You learn to pick them quickly after a while.

        If you have animals such as dogs and cats it's much more than that.

    • huytersd 11 days ago

      If you take precautions, you might get bitten once a season. Taking antibiotics once or twice a year isn’t all that insane.

      Why not just use permethrin or anti tick clothing if you’re regularly pulling off 10-20 ticks. It’s disgusting and you can get some other serious diseases besides Lyme like Rocky mountain fever, alpha gal or encephalitis that are harder to treat or have no cures.

      I’ve always heard the 24-36 hour thing is a statistical probability figure. You most probably won’t but you could get it as soon as the tick attaches as well. Also if you squeeze the body of an engorged tick as you’re pulling it out, you force all the contents of its stomach (where the Lyme bacteria lives), into your bloodstream. Always use tweezers and go for the head.

  • CatWChainsaw 11 days ago

    DEET is a repellent which is meant to keep them away, but if they land then they land. Permethrin is a pesticide so it kills. When I'm in the woods I wear outdoor clothing that's been sprayed with permethrin, but I also put a "heavy-duty" DEET repellent on my clothes and use OLE (oil of lemon and eucalyptus) on exposed skin, even though the last one might just be placebo.

  • xorcist 11 days ago

    After every bite? That is a manual how to breed multi resistant Borrelia burgdorferi, the short version.

    Please be a responsible human being and consult a doctor. Common symptoms for a bacterial infections are flu like symptoms and a bullseye-like rash a few days after the bite. Be on the lookout for those and you will be fine.

    • deng 11 days ago

      Unfortunately, these 'common symptoms' often do not occur after an infection, so this is misleading. In never had them but was positive for Lyme after dealing with joint pain for quite a while. Taking a single dose of Doxy is usually recommended if you live in an area with high prevalence of Lyme in ticks [1], and if the tick was not cleanly removed within 24h. The latest meta study I'm aware of showed that this will reduce the likelihood of infection by about 70% [2].

      The fear of breeding a MR Borrelia is completely overblown. By far the highest risk of breeding MRSA are in a hospital setting, not by taking a single dose of Doxy at home. The main reason to not take Doxy is its side effects (for instance, when I had to take it against my Lyme infection, I vomited like there's no tomorrow, which fortunately is one of the lesser serious side effects. Had to switch to Amoxi.).

      [1] https://www.cdc.gov/lyme/datasurveillance/lyme-disease-maps....

      [2] https://bmcinfectdis.biomedcentral.com/articles/10.1186/s128...

    • huytersd 11 days ago

      Getting antibiotics maybe once a year is not excessive. Please stop being hyperbolic, I’m well aware of MRSAs and do my best to take them sparingly. Where I live between 50-70% of the deer ticks have Lyme disease so it’s not overkill.

      • xorcist 11 days ago

        This was in reference to after every bite, not once a year.

        Antibiotic resistance is not hyperbole. It is a real problem, and potentially a big one. What would be hyperbolic is if the part of the world that lives in tick infested regions would be pretty much on a constant antibiotic binge during season.

        A full dose is two weeks and you are likely to be bitten again. I don't know if the suggestion was in reference to ideas that float around the Internet that you shouldn't take the full two week dose, but none of those studies have been replicated. Given what we know from how antibiotic resistance forms, they could be potentially harmful.

        Just be careful when taking medical advice.

        • underbooter 11 days ago

          By far the weirdest thing to me in this entire thread, as someone who had long-term Lyme disease, is the dudes bragging about how often they remove ticks from themselves and their children, yet who are more scared of antibiotic resistance the Lyme.

          Simply does not compute. Do you, like, get off on risking contracting infectious disease? I feel bad for your children.

          • xorcist 10 days ago

            That's perhaps the weirdest insult attempt in a long time.

            Perhaps not removing the tiny spider like creatures that suck your blood could be something to brag about in some overly macho context. But removing them? Of course I remove them, from myself, children, pets, and anyone else. Ticks are a fact of life, and you will get bitten if you live in their areas.

            A vaccine can not some soon enough. In the meantime, Lyme can be cured by antibiotics. Staying put indoors or constantly being on antibiotics during summer is not an option.

            If I contacted my practitioner and wanted prophylactic wide spectrum antibiotics I'd be kindly shown the door. That is a controlled substance for a reason. That reason is antibiotic resistance, a well studied scientific fact, and not something where our own opinions matter much.

        • huytersd 11 days ago

          Antibiotic resistance almost never occurs in isolated situations. It’s hospital settings and large factory farms that are the issue. Either ways there’s a Lyme vaccine on the way. It should be available by 2025.

      • CatWChainsaw 11 days ago

        Sorry for the akshually energy, but the acronym MRSA is specifically for methicillin-resistant Staph aureus. In this context you might have meant MDR for multi-drug resistant? There's also XDR for the apocalyptic superbugs we're inadvertently breeding.

        • huytersd 11 days ago

          Yeah I didn’t know the difference. Multi drug resistant anything is what I meant.

  • keepamovin 11 days ago

    Ah faithful doxycycline, a legitimate cureall. Well tolerated, cheap, with few side effects when used sparingly.

    • underbooter 11 days ago

      Just watch out for the vomiting.

      • keepamovin 10 days ago

        For me it's diarrhea. But yeah...Is the vomiting mostly with babies? Or even adults?

  • 01HNNWZ0MV43FF 11 days ago

    You can get into your PCP in less than a week?

    • huytersd 11 days ago

      Yes but I’ve also used one of the plethora of telehealth systems before that will let you speak to a doctor within a hour and you can pick up your prescription in two.

Simulacra 11 days ago

Don't go outside barefoot?