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.
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/
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.
It's more and more probable that an infected tick passes on sufficient amounts of the bacteria that causes Lyme disease into blood as time passes.
It's almost certain to have crossed that threshold after 24 hours.
It's unlikely and uncommon to have happened in five minutes or an hour.
It's possible to occur almost immediately .. but that would likely only happen to someone with a weak immune system that's easily overwhelmed by a relatively small amount of bacteria.
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.
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.
> 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.
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?
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!
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.
If someone is suffering as badly as the people in the article and the doctors have no idea what is going on, then the benefit of taking antibiotics outweighs the risks.
You seem to forget that this patient is suffering. Having their gut biome wiped out is nothing compared to them chronically suffering as they are.
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.
You forget that the patient is chronically suffering and the doctors have no idea what is causing the suffering. The fact that it isn't a "good idea" doesn't outweigh the fact that it might be a bacterial infection that they don't detect, and if the doctors have no more ideas, then taking a course of wide spectrum antibiotics certainly has more benefits than risks.
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.
Readit News
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.
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.
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https://radiolab.org/podcast/patient-zero-updated
Any relationship?
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
It's almost certain to have crossed that threshold after 24 hours.
It's unlikely and uncommon to have happened in five minutes or an hour.
It's possible to occur almost immediately .. but that would likely only happen to someone with a weak immune system that's easily overwhelmed by a relatively small amount of bacteria.
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.
> 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.
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.
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.
- 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?
Seeing someone improve after taking antibiotics is not indicative of them having an infection that’s being treated by the antibiotics.
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.
If someone is suffering as badly as the people in the article and the doctors have no idea what is going on, then the benefit of taking antibiotics outweighs the risks.
You seem to forget that this patient is suffering. Having their gut biome wiped out is nothing compared to them chronically suffering as they are.
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.
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