If you're somewhat terrified of Lyme's disease, as I am, one thing you can do to protect yourself and relatives is wear Permethrin treated clothing, especially pants and socks[0].
After hiking, take a very close look at all of your body parts and remove any ticks. You can bag them and send them off to a lab for testing as well.
I've known multiple Lyme's sufferers. You do not want this.
For anyone interested in a deeper dive into the history and impacts of Lyme Disease I highly recommend the podcast miniseries Patient Zero: https://www.patientzeropodcast.com/
My dad got bit by a tick, came down with a high fever, but tested negative for Lyme so the doctor wouldn't prescribe antibiotics after two appointments with worsening symptoms.
He was hospitalized when he was too sick to walk and then an infectious disease specialist put him on antibiotics, and he got better in a few days, minus some permanent nerve damage in his face.
It's amazing how confident some doctors can be when they haven't got a fucking clue. The more I read about high false positive rates and non-lyme tick-borne bacteria the more mad I get about what happened.
Yeah, a family member and I had to basically throw studies at a doctor to get him to agree to prescribe a medicine he insisted "doesn't work" (even despite studies clearly showing it does, like indisputably). Even after that he still said something like "sure, whatever, if you want to try it you can", all dismissively as if we're stupid and wasting our time. Oh, and then he prescribed an amount that would never work. We still wonder if he sabotaged it on purpose. Had to go back and get it re-prescribed at the actually-correct amount. The medication worked, and we avoided a completely unnecessary surgery. I have so, so many stories like this.
That’s an awful thing to have gone through, but they are sometimes in a lose-lose-lose situation wrt insurance(s)-best practices-community concerns.
Maybe the patient’s insurance requires certain conditions to be met. Depending on the drug even expressing you’d be ok paying out of pocket can be dicey.
Maybe their malpractice insurance has some conditions based on actions of this doctor or not even this doctor but their insurance pool.
Maybe the hospital, state, school they are at or went to has procedures that just weren’t met for whatever reason. If you are dead set on getting or trying a particular treatment I have found it useful to know what these are. This can backfire spectacularly though if they suspect they’re being played. (Which is an additional related meta game).
And then there are societal/community issues. We aren’t in the time of just using antibiotics whenever something comes up as suspect. We are running out of effective antibiotics for some strains. Having had a resistant bacterial infection I wish people had had more restraint.
Learning to play the medical game or even realizing there is one is extremely upsetting. Doubly so when dealing with sudden life altering conditions. I got mad at it too. But that also didn’t help me, until I realized it’s just a big system like any other.
Bacteriophages might be an interesting approach to treating Lyme disease in future. Pretty speculative at this stage though and how do you even know the bacteria are there (as this article points out). Once detected how do you avoid the bacteriophage causing an immune reaction, etc.
I'm amazed to see kids and adult wearing shorts going out for forest walks. We are in an area of dense woods filled with deer, and even the fields are full of sheep that also carry ticks... There is zero awareness in the general population of the dangers of tick bites!
The writer is clearly a good, loving parent, but this stuck out to me:
> It took weeks of careful discussion before she would try a combination of antibiotics. We didn’t yet tell her these antibiotics make some patients feel sicker.
Shouldn’t she be told the possible risks of her medication? If she was 7 i would understand, but I think she’s like 14 at this point? I guess it may be hard to determine when people can own their health decisions. But I’m upset when kids aren’t treated as “real people”, i remember being ignored because I was just a kid. I suspect that by high school almost everyone should be informed about their health decisions.
Informed, yes. Allowed to make critical choices as children? No.
I'm with you, people act like children don't exist when they're talking about serious matters. But you do have to remember that they lack critical reasoning (partly) and make bad choices based on hormones. Walking the line between autonomy and protection is very very very difficult as a parent. Most people struggle or fail at this, I believe.
We have to trust that parents generally make the best decisions they can for their kids. Society has gone too far towards prescribing what a parent must or must not do. We’re in a world now where in many places a parent can’t let their kids walk to school by themselves, or can’t let them sit in a car for 5 minutes while they run into a store to pick something up. Sometimes it is better for a parent to shield a child from something that would scare them, and it should be up to the parent to decide where that line is.
You’ve dodged the difficult question (“how to respect kids’ medical rights”) by presenting an elegant solution (“it’s always up to the parents, what they say goes” — I’m doing my best to paraphrase faithfully here). I _love_ elegant solutions to difficult problems, so your solution appeals to me! However, if you look at it more closely i think you’ll see that the elegant solution doesn’t work well enough in this case. Consider the following examples:
- what if the parents had decided that Molly should only receive treatment from their shaman healer? Should this decision be allowed?
- some parents don’t want their kids to be vaccinated. Should they be allowed to make this decision?
- some parents may want a sex change for their 1 year old, because it’s more fashionable to have a baby boy/girl/etc. Setting aside legal restrictions that presently exist, should this be allowed?
I bet you’d object to some of the above, as would I. Reasonable people can disagree over exactly what rights kids should have, how they are enforced, how they change with age, etc. Nobody will ever be fully happy with the laws we enact. But a solution which tries to be good is imo better than saying “anything goes, as long as the parents consent”.
To be honest I suspect that you never believed “ anything goes, as long as the parents consent”. I suspect your view is perhaps more like “parents can decide whether to accept novel treatments for children with life-limiting chronic illness”. Is that maybe closer to your view?
> or can’t let them sit in a car for 5 minutes while they run into a store to pick something up
Unfortunately, you get headlines like "child / dog died or sustained serious injury because they were forgotten in a car" pretty damn frequently, and the frequency is increasing.
The reasons are manifold IMHO. For one, way more people are always on edge, working multiple jobs and highly stressed, which makes errors and mistakes much more likely. Then you got the "working homeless" crowd that just can't afford housing any more, and yes, way too often that includes children. And then, cars have gotten smarter and "safer" as well. Your old 90s era car likely still had manual window rolls and door locks. At least a child can be guided to open the door from the inside or can operate the window roller. Modern cars have electric window lifters that don't work without at least the basic car systems started, and (too many) parents disable the interior door unlocks on the rear doors.
According to this link https://www.kidsandcars.org/document_center/download/hot-car... (and I’m guessing any bias would be to overcount given the goals of the organization), 1125 kids have died in this way since 1990. That sounds like a lot, but compared to the hundreds of millions of people in the US, it’s vanishingly small.
Regulating this way leads to a straitjacket society where we are not allowed to take any risks whatsoever, no matter how minuscule. We’re not banning kids from being around kitchens, stairs or bicycles, which all present greater danger. Meanwhile, we are creating an environment where kids can only venture outside the home in highly regulated and supervised situations and wondering why things like social anxiety are rising off the charts.
If we wanted cars to be capable of letting kids out, car manufacturers would have to do it, much like they have to avoid creating all the other dangerous situations a car can create. The question is “should parents be given discretion to parent their kids”, saying no because car windows don’t roll down isn’t really engaging with that.
It's always the same in the end - the thing with a low-trust society vs a high-trust society.
When an ever increasing part of the population is cognitively impaired, (massively) under-educated themselves and/or doesn't have the time and money to properly take care of their children, a lot of implicit and explicit assumptions just go straight out of the window. The fact that car dependency and car centrism makes a whole lot of other assumptions (like, that you can let your child outside unattended because nothing will happen to them) go away as well doesn't help either.
And lawmakers and executive agencies like CPS? They only see that "numbers go up" or get blasted for high-profile cases where the shit really hit the fan, but as addressing the root causes goes far out of their scope (both legal and financial), each uses the tools at their disposal to try and keep up.
I don’t know if it’s quite a trust issue. Maybe it’s more a low- v high- responsibility society. It seems more like people want responsibility removed from people and given to the government. In my experience people become more competent when they have responsibility, so the removal of responsibility seems (to me at least) like it will train people into incompetence.
Seems like when doctors are confounded, then a course of strong antibiotics might be a good Hail Mary, targeting various types of bacteria. If there’s any signs of improvement then that’s a good piece of evidence to move forward in that direction.
This is multiple layers of uneducated and misguided. Apart from it being a bad idea on the surface, due to antibiotic resistance and wiping out healthy parts of the microbiome, many common antibiotics have anti-inflammatory effects separate from their antimicrobial effects: https://link.springer.com/rwe/10.1007/978-3-7643-8550-7_7
Seeing someone improve after taking antibiotics is not indicative of them having an infection that’s being treated by the antibiotics.
> Seeing someone improve after taking antibiotics is not indicative of them having an infection
It could be. It is also not indicative of them not having an infection. It just depends.
As per my limited understanding, anti-inflammatory antibiotics are more relevant for respiratory and auto-immune conditions, not too broadly otherwise. If the source of the inflammation is not treated, the temporary reduction in inflammation is pointless because the inflammation will return.
Random strong antibiotics are not a good idea. One could estimate the possible condition, then estimate the most targeted safe antibiotic, and take its full course correctly. Also, sometimes it's not a bacterial infection, and can be a viral/amoebic/parasitic/worm or in rare cases a fungal infection.
For example, in a specific case, for acute intestinal pain, amoxicilin with clav was being advised, but the etiology+location+correlations suggested that mere metronidazole alone would suffice, and it did. It's case by case.
I got Lyme about 2 months ago. Initially just woke up and had a small bite on back of thigh, thought it was just a fly bite or something and no tick was attached. That night I was feverish and for the next couple nights with muscle soreness like when you sleep on ground or something, mind you I was sleeping in a very rustic cabin so I presumed that actually was the cause. I watched the bite tho and it never showed a bullseye. Instead it had pustules and eventually grew to be a giant red inflamed bite the size of a, well at its peak basically the size of a basketball which is of course wild and alarming. The wound itself got infected which is why the bite grew to that size. At the time I actually thought I had like rolled over on a spider or something and it bit me multiple times cause I had no idea a tick bite could cause this sort of reaction, but I guess my body very violently reacted to the Lyme. I went and got antibiotics for my bite tho the initial GP I saw didn’t test for Lyme even tho I had a mystery bite from being in the woods. Regardless I went on antibiotics just for the infected bite but not for Lyme. It was only 2 weeks later when I was doing yoga and ended up “overstretching” my liver area (the start of my weird Lyme symptoms) such that my right flank was spasming and my whole back chain had seized up leading to a week of intense pain and inability to sleep due to the pain. Ultimately I went to the ER, because well I’m Canadian and the ER is the only place you can get timely healthcare. Thankfully the ER doc there heard about the bite and tested me for Lyme, which ultimately came back positive. I likely would’ve foolishly missed it were it not for her. So I’m very grateful I got bit in 2025 when docs are atleast starting to be more Lyme aware. I went on doxycycline and symptoms resolved. I’m still throwing the kitchen sink at it tho with auxiliary treatments too like ozone IV’s and traditional Chinese medicine herbs from a doc who did their PhD on Lyme. Very much front loading an aggressive approach as early as possible.
What I’ve learned is a couple things: 1. A bullseye doesn’t always appear even if it’s certainly Lyme disease, 2. The bite reaction can be very significant and not what you would think from a normal tic bite, 3. Doxycycline is an incredible drug but also the peer reviewed literature shows the Lyme bacteria and coinfections can remain after even extensive courses of doxy so while it’s very effective it’s not completely effective and shouldn’t be the only tool used. 4. Test early. I’m so thankful the ER doc caught it early for me and I got treated. I actually feel even better than before as ironically the doxy also fixed me decade long digestive issues which is a great plus. But Lyme in its early phase is such a different thing than Lyme that’s been around for a year +. I highly recommend testing asap if anyone ever has any concerns or worries
Wouldn't a simple bacterial blood culture test have caught it? If not, why not? In any event, the article doesn't share which antibiotics and herbals were used.
This is good example of how disastrous NHS can be (and it's not even that serious compared to horror stories that involve cancer) and makes me look at the flawed but also clearly superior US health system with renewed appreciation.
I think it's normal for the parents to resent the NHS for this, but from what I've read about about patient experiences, many US doctors believe "chronic lyme" is not a real diagnosis, and that TDOT blood test she took is not standard of care, so private insurers, wouldn't cover it either. So in the US, a patient would likely end up paying up to their deductible for all those tests that ruled out other things, and then still pay out of pocket for a specialist. I'm open to hearing otherwise, but just because the NHS experience was bad, doesn't give me confidence that the average US experience isn't also bad.
> The article makes several points about how the US medical establishment, including the US government, is doing better in this regard than NHS.
It claims that "US government agencies are taking tick-borne disease much more seriously", and that may be their words, but I challenge you to point to actions which support them. It also doesn't mention that Trump administration actions have decreased and destabilized overall federal support environments (NIH/CDC) that fund tick-related disease research.
I have a friend who's gone through a similar years-long journey with his daughter. In Silicon Valley, at least, the medical establishment spent years trying to gaslight the family about their daughter's symptoms.
I agree, much of what we knew about the USG position on health care research has recently been called into question, and so it may already be that the author's contention is untrue.
But on the flip side, the problem they describe with the NHS -- namely, that no means no, is less likely to happen in the US. And I think suggesting that there is just one 'medical establishment' in Silicon Valley is painting with far too broad a brush.
Our problem is probably more with particular insurance companies (UHC is so egregious, it is hard to be surprised that so many people were not horrified when their CEO was gunned down in broad daylight). But at least you can easily pick a new provider.
Ugh, I hear this from people in Canada too. I'm in the US, and given the decades long experiences with shoulder shrugs from medical experts around chronic health issues for myself and others, this comment really frustrates me. It is absolutely not superior. In fact I would argue that if the person in the article approached the same thing here, they'd never get the treatment they got through the NHS.
It took 5 years for my wife to get tested for rheumatoid arthritis (which she was finally diagnosed with after tests and exams proved it), and that's only because I kept insisting. The doctors here will easily hand wave any sort of complicated chronic illness. Mayo clinic - one of the top medical institutions in America - gave up on my dad's neurological illness. He was very active 3 years ago, today he is in a wheelchair. Diagnosis? Who knows, it's too complicated, they're not interested anymore.
In the US, if you actually care about fixing a problem, it really helps to do tests yourself privately and quickly if the doctor or specialist is unwilling. Let's say there are 30-50 blood tests that are relevant for a set of symptoms. I would do up to $500 worth of tests at a time, then repeat the loop, continuing with the next batch until an answer is found or until all applicable tests are exhausted. Each normal result helps refine the next batch.
If you're somewhat terrified of Lyme's disease, as I am, one thing you can do to protect yourself and relatives is wear Permethrin treated clothing, especially pants and socks[0].
After hiking, take a very close look at all of your body parts and remove any ticks. You can bag them and send them off to a lab for testing as well.
I've known multiple Lyme's sufferers. You do not want this.
[0]: https://www.cdc.gov/ticks/prevention/index.html
For anyone interested in a deeper dive into the history and impacts of Lyme Disease I highly recommend the podcast miniseries Patient Zero: https://www.patientzeropodcast.com/
Looks like that was released a couple years after the fantastic radiolab episode(s) of the same name
https://radiolab.org/podcast/patient-zero-updated
Any relationship?
My dad got bit by a tick, came down with a high fever, but tested negative for Lyme so the doctor wouldn't prescribe antibiotics after two appointments with worsening symptoms.
He was hospitalized when he was too sick to walk and then an infectious disease specialist put him on antibiotics, and he got better in a few days, minus some permanent nerve damage in his face.
It's amazing how confident some doctors can be when they haven't got a fucking clue. The more I read about high false positive rates and non-lyme tick-borne bacteria the more mad I get about what happened.
Yeah, a family member and I had to basically throw studies at a doctor to get him to agree to prescribe a medicine he insisted "doesn't work" (even despite studies clearly showing it does, like indisputably). Even after that he still said something like "sure, whatever, if you want to try it you can", all dismissively as if we're stupid and wasting our time. Oh, and then he prescribed an amount that would never work. We still wonder if he sabotaged it on purpose. Had to go back and get it re-prescribed at the actually-correct amount. The medication worked, and we avoided a completely unnecessary surgery. I have so, so many stories like this.
That’s an awful thing to have gone through, but they are sometimes in a lose-lose-lose situation wrt insurance(s)-best practices-community concerns.
Maybe the patient’s insurance requires certain conditions to be met. Depending on the drug even expressing you’d be ok paying out of pocket can be dicey.
Maybe their malpractice insurance has some conditions based on actions of this doctor or not even this doctor but their insurance pool.
Maybe the hospital, state, school they are at or went to has procedures that just weren’t met for whatever reason. If you are dead set on getting or trying a particular treatment I have found it useful to know what these are. This can backfire spectacularly though if they suspect they’re being played. (Which is an additional related meta game).
And then there are societal/community issues. We aren’t in the time of just using antibiotics whenever something comes up as suspect. We are running out of effective antibiotics for some strains. Having had a resistant bacterial infection I wish people had had more restraint.
Learning to play the medical game or even realizing there is one is extremely upsetting. Doubly so when dealing with sudden life altering conditions. I got mad at it too. But that also didn’t help me, until I realized it’s just a big system like any other.
https://www.sciencedirect.com/science/article/pii/S002228362...
Bacteriophages might be an interesting approach to treating Lyme disease in future. Pretty speculative at this stage though and how do you even know the bacteria are there (as this article points out). Once detected how do you avoid the bacteriophage causing an immune reaction, etc.
Another option is to completely cover tick infested areas with suitable fungal spores: https://www.wur.nl/en/newsarticle/fungus-potential-viable-al...
I'm amazed to see kids and adult wearing shorts going out for forest walks. We are in an area of dense woods filled with deer, and even the fields are full of sheep that also carry ticks... There is zero awareness in the general population of the dangers of tick bites!
I’m guilty. My legs are torn up by mosquitos even as I type. It’s just so fucking hot and humid in the summers.
The writer is clearly a good, loving parent, but this stuck out to me:
> It took weeks of careful discussion before she would try a combination of antibiotics. We didn’t yet tell her these antibiotics make some patients feel sicker.
Shouldn’t she be told the possible risks of her medication? If she was 7 i would understand, but I think she’s like 14 at this point? I guess it may be hard to determine when people can own their health decisions. But I’m upset when kids aren’t treated as “real people”, i remember being ignored because I was just a kid. I suspect that by high school almost everyone should be informed about their health decisions.
Informed, yes. Allowed to make critical choices as children? No.
I'm with you, people act like children don't exist when they're talking about serious matters. But you do have to remember that they lack critical reasoning (partly) and make bad choices based on hormones. Walking the line between autonomy and protection is very very very difficult as a parent. Most people struggle or fail at this, I believe.
We have to trust that parents generally make the best decisions they can for their kids. Society has gone too far towards prescribing what a parent must or must not do. We’re in a world now where in many places a parent can’t let their kids walk to school by themselves, or can’t let them sit in a car for 5 minutes while they run into a store to pick something up. Sometimes it is better for a parent to shield a child from something that would scare them, and it should be up to the parent to decide where that line is.
You’ve dodged the difficult question (“how to respect kids’ medical rights”) by presenting an elegant solution (“it’s always up to the parents, what they say goes” — I’m doing my best to paraphrase faithfully here). I _love_ elegant solutions to difficult problems, so your solution appeals to me! However, if you look at it more closely i think you’ll see that the elegant solution doesn’t work well enough in this case. Consider the following examples:
- what if the parents had decided that Molly should only receive treatment from their shaman healer? Should this decision be allowed?
- some parents don’t want their kids to be vaccinated. Should they be allowed to make this decision?
- some parents may want a sex change for their 1 year old, because it’s more fashionable to have a baby boy/girl/etc. Setting aside legal restrictions that presently exist, should this be allowed?
I bet you’d object to some of the above, as would I. Reasonable people can disagree over exactly what rights kids should have, how they are enforced, how they change with age, etc. Nobody will ever be fully happy with the laws we enact. But a solution which tries to be good is imo better than saying “anything goes, as long as the parents consent”.
To be honest I suspect that you never believed “ anything goes, as long as the parents consent”. I suspect your view is perhaps more like “parents can decide whether to accept novel treatments for children with life-limiting chronic illness”. Is that maybe closer to your view?
> or can’t let them sit in a car for 5 minutes while they run into a store to pick something up
Unfortunately, you get headlines like "child / dog died or sustained serious injury because they were forgotten in a car" pretty damn frequently, and the frequency is increasing.
The reasons are manifold IMHO. For one, way more people are always on edge, working multiple jobs and highly stressed, which makes errors and mistakes much more likely. Then you got the "working homeless" crowd that just can't afford housing any more, and yes, way too often that includes children. And then, cars have gotten smarter and "safer" as well. Your old 90s era car likely still had manual window rolls and door locks. At least a child can be guided to open the door from the inside or can operate the window roller. Modern cars have electric window lifters that don't work without at least the basic car systems started, and (too many) parents disable the interior door unlocks on the rear doors.
According to this link https://www.kidsandcars.org/document_center/download/hot-car... (and I’m guessing any bias would be to overcount given the goals of the organization), 1125 kids have died in this way since 1990. That sounds like a lot, but compared to the hundreds of millions of people in the US, it’s vanishingly small.
Regulating this way leads to a straitjacket society where we are not allowed to take any risks whatsoever, no matter how minuscule. We’re not banning kids from being around kitchens, stairs or bicycles, which all present greater danger. Meanwhile, we are creating an environment where kids can only venture outside the home in highly regulated and supervised situations and wondering why things like social anxiety are rising off the charts.
If we wanted cars to be capable of letting kids out, car manufacturers would have to do it, much like they have to avoid creating all the other dangerous situations a car can create. The question is “should parents be given discretion to parent their kids”, saying no because car windows don’t roll down isn’t really engaging with that.
It's always the same in the end - the thing with a low-trust society vs a high-trust society.
When an ever increasing part of the population is cognitively impaired, (massively) under-educated themselves and/or doesn't have the time and money to properly take care of their children, a lot of implicit and explicit assumptions just go straight out of the window. The fact that car dependency and car centrism makes a whole lot of other assumptions (like, that you can let your child outside unattended because nothing will happen to them) go away as well doesn't help either.
And lawmakers and executive agencies like CPS? They only see that "numbers go up" or get blasted for high-profile cases where the shit really hit the fan, but as addressing the root causes goes far out of their scope (both legal and financial), each uses the tools at their disposal to try and keep up.
I don’t know if it’s quite a trust issue. Maybe it’s more a low- v high- responsibility society. It seems more like people want responsibility removed from people and given to the government. In my experience people become more competent when they have responsibility, so the removal of responsibility seems (to me at least) like it will train people into incompetence.
Seems like when doctors are confounded, then a course of strong antibiotics might be a good Hail Mary, targeting various types of bacteria. If there’s any signs of improvement then that’s a good piece of evidence to move forward in that direction.
This is multiple layers of uneducated and misguided. Apart from it being a bad idea on the surface, due to antibiotic resistance and wiping out healthy parts of the microbiome, many common antibiotics have anti-inflammatory effects separate from their antimicrobial effects: https://link.springer.com/rwe/10.1007/978-3-7643-8550-7_7
Seeing someone improve after taking antibiotics is not indicative of them having an infection that’s being treated by the antibiotics.
> Seeing someone improve after taking antibiotics is not indicative of them having an infection
It could be. It is also not indicative of them not having an infection. It just depends.
As per my limited understanding, anti-inflammatory antibiotics are more relevant for respiratory and auto-immune conditions, not too broadly otherwise. If the source of the inflammation is not treated, the temporary reduction in inflammation is pointless because the inflammation will return.
Why not chemo-therapy? Just nuke and re-build.
Random strong antibiotics are not a good idea. One could estimate the possible condition, then estimate the most targeted safe antibiotic, and take its full course correctly. Also, sometimes it's not a bacterial infection, and can be a viral/amoebic/parasitic/worm or in rare cases a fungal infection.
For example, in a specific case, for acute intestinal pain, amoxicilin with clav was being advised, but the etiology+location+correlations suggested that mere metronidazole alone would suffice, and it did. It's case by case.
Very interesting article. Didn’t know there’s so much research left to do when it comes to Lyme disease.
There used to be a vaccine for lyme. It got pulled because of some apparently unfounded claims about causing autoimmune disease.
Having dealt with it myself, I can only hope that humanity starts taking lyme and other tick-borne diseases more seriously.
I got Lyme about 2 months ago. Initially just woke up and had a small bite on back of thigh, thought it was just a fly bite or something and no tick was attached. That night I was feverish and for the next couple nights with muscle soreness like when you sleep on ground or something, mind you I was sleeping in a very rustic cabin so I presumed that actually was the cause. I watched the bite tho and it never showed a bullseye. Instead it had pustules and eventually grew to be a giant red inflamed bite the size of a, well at its peak basically the size of a basketball which is of course wild and alarming. The wound itself got infected which is why the bite grew to that size. At the time I actually thought I had like rolled over on a spider or something and it bit me multiple times cause I had no idea a tick bite could cause this sort of reaction, but I guess my body very violently reacted to the Lyme. I went and got antibiotics for my bite tho the initial GP I saw didn’t test for Lyme even tho I had a mystery bite from being in the woods. Regardless I went on antibiotics just for the infected bite but not for Lyme. It was only 2 weeks later when I was doing yoga and ended up “overstretching” my liver area (the start of my weird Lyme symptoms) such that my right flank was spasming and my whole back chain had seized up leading to a week of intense pain and inability to sleep due to the pain. Ultimately I went to the ER, because well I’m Canadian and the ER is the only place you can get timely healthcare. Thankfully the ER doc there heard about the bite and tested me for Lyme, which ultimately came back positive. I likely would’ve foolishly missed it were it not for her. So I’m very grateful I got bit in 2025 when docs are atleast starting to be more Lyme aware. I went on doxycycline and symptoms resolved. I’m still throwing the kitchen sink at it tho with auxiliary treatments too like ozone IV’s and traditional Chinese medicine herbs from a doc who did their PhD on Lyme. Very much front loading an aggressive approach as early as possible.
What I’ve learned is a couple things: 1. A bullseye doesn’t always appear even if it’s certainly Lyme disease, 2. The bite reaction can be very significant and not what you would think from a normal tic bite, 3. Doxycycline is an incredible drug but also the peer reviewed literature shows the Lyme bacteria and coinfections can remain after even extensive courses of doxy so while it’s very effective it’s not completely effective and shouldn’t be the only tool used. 4. Test early. I’m so thankful the ER doc caught it early for me and I got treated. I actually feel even better than before as ironically the doxy also fixed me decade long digestive issues which is a great plus. But Lyme in its early phase is such a different thing than Lyme that’s been around for a year +. I highly recommend testing asap if anyone ever has any concerns or worries
I recommend to read the whole article, it's really well-written. Hard to imagine what her parents must feel, I would be absolutely livid at the NHS.
Wouldn't a simple bacterial blood culture test have caught it? If not, why not? In any event, the article doesn't share which antibiotics and herbals were used.
It’s never that easy. Some pathogens are very difficult to culture. https://en.m.wikipedia.org/wiki/Lyme_disease#:~:text=availab...
I've heard about some theory from the almost-pseudoscience world, that bacteriae communicate between themselves over electrical signals...
This is good example of how disastrous NHS can be (and it's not even that serious compared to horror stories that involve cancer) and makes me look at the flawed but also clearly superior US health system with renewed appreciation.
I think it's normal for the parents to resent the NHS for this, but from what I've read about about patient experiences, many US doctors believe "chronic lyme" is not a real diagnosis, and that TDOT blood test she took is not standard of care, so private insurers, wouldn't cover it either. So in the US, a patient would likely end up paying up to their deductible for all those tests that ruled out other things, and then still pay out of pocket for a specialist. I'm open to hearing otherwise, but just because the NHS experience was bad, doesn't give me confidence that the average US experience isn't also bad.
The article makes several points about how the US medical establishment, including the US government, is doing better in this regard than NHS.
It's like the Internet just has an allergy to saying anything nice about America, even if it's only faint praise.
> The article makes several points about how the US medical establishment, including the US government, is doing better in this regard than NHS.
It claims that "US government agencies are taking tick-borne disease much more seriously", and that may be their words, but I challenge you to point to actions which support them. It also doesn't mention that Trump administration actions have decreased and destabilized overall federal support environments (NIH/CDC) that fund tick-related disease research.
I have a friend who's gone through a similar years-long journey with his daughter. In Silicon Valley, at least, the medical establishment spent years trying to gaslight the family about their daughter's symptoms.
I agree, much of what we knew about the USG position on health care research has recently been called into question, and so it may already be that the author's contention is untrue.
But on the flip side, the problem they describe with the NHS -- namely, that no means no, is less likely to happen in the US. And I think suggesting that there is just one 'medical establishment' in Silicon Valley is painting with far too broad a brush.
Our problem is probably more with particular insurance companies (UHC is so egregious, it is hard to be surprised that so many people were not horrified when their CEO was gunned down in broad daylight). But at least you can easily pick a new provider.
Ugh, I hear this from people in Canada too. I'm in the US, and given the decades long experiences with shoulder shrugs from medical experts around chronic health issues for myself and others, this comment really frustrates me. It is absolutely not superior. In fact I would argue that if the person in the article approached the same thing here, they'd never get the treatment they got through the NHS.
It took 5 years for my wife to get tested for rheumatoid arthritis (which she was finally diagnosed with after tests and exams proved it), and that's only because I kept insisting. The doctors here will easily hand wave any sort of complicated chronic illness. Mayo clinic - one of the top medical institutions in America - gave up on my dad's neurological illness. He was very active 3 years ago, today he is in a wheelchair. Diagnosis? Who knows, it's too complicated, they're not interested anymore.
In the US, if you actually care about fixing a problem, it really helps to do tests yourself privately and quickly if the doctor or specialist is unwilling. Let's say there are 30-50 blood tests that are relevant for a set of symptoms. I would do up to $500 worth of tests at a time, then repeat the loop, continuing with the next batch until an answer is found or until all applicable tests are exhausted. Each normal result helps refine the next batch.