How did we all miss the bacteria taking over her body?
theguardian.com
theguardian.com
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.
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.
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.
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.
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.
- 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?
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.
If you are truly convinced it's a bacterial infection, then you can use a broad spectrum antibiotic, e.g. amox+clav, which you can get on your own, but I would simultaneously take a probiotic twice daily to prevent the gut from getting colonized by bad microbiota, e.g. C diff. Even so, sometimes a different antibiotic is needed, e.g. doxycycline.
During the early months of Covid I had to take chloroquine. The point again is that no one medicine really is broad enough.
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.
Having dealt with it myself, I can only hope that humanity starts taking lyme and other tick-borne diseases more seriously.
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
It's like the Internet just has an allergy to saying anything nice about America, even if it's only faint praise.
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.
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.
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.
citation needed? I'm a brit and will give you that the NHS has its failings but I hear bad things about the US system too. Probably the systems in France and Germany work better than either.