The doctors were completely dismissive of and uninterested in the symptoms -- it really shook my faith in medical practice. We were on an oddessey to determine what was wrong and could be done to help. It took her 6 months to resume walking more than a short distance. She still has foot and hand problems from permanent neuropathy that affect her daily.
A few years after, Levaquin was black-labelled, and I believe no longer the first line of defense for children at least. The whole thing still burns me.
I suspect this sort of information is no longer rare but if anyone is having this experience then a GABA agonist like benzodiazepine may help you, but be extremely careful as they are quickly dependence forming and must be weened. Small dose.
I had exactly the same issue! GPs ran a few tests and couldn't figure it out. They labelled is as fibromyalgia, even though I didn't fit the criteria. I pushed to see a neurologist, who ran a few tests and couldn't figure it out - he also labelled it as fibromyalgia, even though when I questioned it he admitted he knew almost nothing about it!
There was a lot of back and forth, with GPs and neurologists being really dismissive. I forget how long this went on for, but a couple of years at least.
So I did my own research over a long period of time. I found only a handful of other cases, but with the symptoms I came to the conclusion that I must have small fibre neuropathy. I pushed the neurologist, who grudgingly did a nerve biopsy, which confirmed small fiber neuropathy. He stopped being dismissive after that.
For pain, I ended up with a similar situation. I tried gabapentin, pregbalin and all the usual things like topical capsicain, TCAs, SNRIs, diazepam, opioids etc. They either didn't help, couldn't be tolerated, or caused more problems. Within the public healthcare systems, the list was eventually exhausted, and they weren't interested in trying anything else. They didn't believe how bad the pain was, and were unwilling in any case to go beyond their list of standard treatments. In the end, I paid to see a private pain specialist, and eventually found ketamine to be really helpful - not just with the pain, but my mental ability to live with it.
Is that what (and as painful as) it sounds like!?
I had a similar experience as a child, where a textbook case of a reasonably common disease went undiagnosed for 2 years by doctors before a toll booth worker at an airport diagnosed me. She recognized the symptoms because her dog had it. Sure enough, after my mother brow-beat a doctor into running the absurdly simple blood test she was proven right.
On the one hand, I want to chalk this up to them being like everyone else: 90% of them are just shit at their jobs. On the other hand, I have it on good authority from nearly every nurse I've ever met that doctors are indeed arrogant, dismissive, and often mistaken.
I think there's an extra layer. Any public facing jobs tend to take a toll on you, too. Some more than others. With doctors patients lie to you constantly, for a variety of reasons. Some drug seeking, some simply not wanting to admit it.
Yea, i imagine they're like everyone else (shit), but i also imagine it is very easy become very dismissive in that line of work.
It's a fine line to know what to filter and what to ignore, i imagine.
When there is so much coercion and lack of consent, people get very frustrated.
I feel like I see this story all the time: "a simple test found the issue that they denied I had".
What we should be examining are the incentives for the doctor to resist running tests. Are they too invasive? Some can be, but blood tests certainly aren't. Are they too expensive? Ah, there's the ticket. The doctors are either losing money on tests that find nothing, or they are getting berated by the managers for wasting money on tests that find nothing, or the insurance company is saying no when they ask to run tests.
We have the technology to have proactive medicine. We could be catching cancers in early stages all the time with some standard sets of annual tests. But the economic incentives are all out of whack, and we're waiting until the last minute to do these tests.
But if you have a test that is wrong 20% of the time, and you take this on all your patients every year, you will end up with a huge amount of mental suffering or possibly physical side-effects (unnecessary biopsies, or even surgery). You might end up giving people long runs of unnecessary meds. OTOH, you might end up missing some diagnoses if you don't do some tests. Balancing all of this is difficult.
Of course this is not news to the medical profession, this is a big input to the standard flowcharts. And you can always find anecdotal edge-cases that think their particular case was crystal clear and should have immediately been diagnosed. But don't assume that medical diagnosis and treatment is as trivial as doing a blood test and some googling.
I will note that in my case the test is routine and reliable and has been since before I was born.
I often wonder why such an expensive device as an MRI machine isn't utilized 24/7. I'd gladly go in for a scan at 3am if it meant paying even as little as 20% less.
It's just information about your body. You shouldn't need a doctor's approval for that.
At the same time, doctors are rewarded for acting as though they are certain.
Not unlike internet commenters rewarded with karma for condemning doctors across the board with certainty.
Humans crave certainty in an uncertain world.
As the joke goes, "What do you call the person who graduated last in his or her class in medical school? Doctor."
If they don't know the answer in 5 minutes, then obviously you must be crazy. 2 minutes, if you're a woman.
They are allergic to 3 little words: "I don't know."
This is too accurate. Our medical system treats women as a minority or nonstandard patient. This is crazy when women are actually a slight majority over men. Usually around 51% of the population.
I developed permanent neuropathy and muscle problems in my lower legs after a course of Levaquin for a respiratory infection. Constant fasciculations, cramping, and pain.
It sounds like you've done your research on potential treatments, however in case you're unaware, I've found considerable relief by soaking my lower legs daily in an Epsom salt bath. I can attest to the fact that magnesium sulfate is without question topically permeable. It may be something for your wife to consider, to see if it helps her.
Frankly, at this point it's pretty clear that the entire healthcare system in the US is parasitical: doctors, hospitals, insurance companies and pharma companies. Their purpose is to extract value, not restore health.
I have a very low opinion of doctors, who are by and large arrogant and of middling intelligence, a dangerous combination when a person's health is at stake.
This and similar comments here, and my own experience make me realize how elitism can be dangerous. We blame social media and propaganda for mistrust jn science (and rightfully we should criticize those) but part of the mistrust is a problem of medicine's own making. What happened to self-doubt?
After the very first pill I was feeling pins and needles in my extremities later that day. I stuck with it for a few more days, each pill feeling even more pins and needles, more intensely and in more places on my body. Once I started feeling it in my face, I called the doctor and they got me on a different antibiotic.
Then I started reading horror stories about the drug and it made sense. I also didn't exercise for a year afterwards out of fear that my achilles tendon would snap, one of the biggest warnings that was on the box and one of the things many of the online horror stories said happened to them.
The neuropathy (pins and needles) lasted for six months before it started going away, and it comes and goes periodically, years later (it's mostly gone now, thankfully). I've had other health issues since that are known possible health issues from Cipro (it's so invasive and effects so many systems of your body). One of the more annoying ones lately is the onset of Tinnitus, which Cipro is known to cause. Maybe it's just a coincidence, but I'll never know for sure since most doctors still don't treat Cipro toxicity seriously or know how to test for it.
I don't think it caused brain fog, but who's to say? I don't feel as mentally acute since then, but I'm also older.
Not really looking forward to any future health problems it may lead to, and I only ever took like 5 pills of the damn thing (it was over 7 years ago now).
I'm so pissed off I wasn't even warned about this, and that it was so casually prescribed without warning. I've taken other antibiotics before and only had to worry about my gut biome getting screwed up, so I wasn't expecting to have such a terrible reaction to the meds.
I was left with small fiber neuropathy (nerve damage) in my arms and legs, and with CFS (Chronic Fatigue Syndrome) too. This means I'm in constant, unending pain (which takes a huge mental toll), that I'm tired all the time, and if I do any more than the gentlest of exercise, I fall asleep and am more tired and in even more pain for days or even weeks afterwards. It's fucking horrible.
This was about 6 years ago, and I'm pretty sure it's permanent. I haven't quite given up hope though - I have several Google Scholar alerts setup, and read several papers every week, in the hope of finding something that might reverse things even a bit.
It is actually an antibiotic (I'd somehow forgotten that - edited my original comment now!), but once that acts as a immunosuppressant, and it's less-common name is diaminodiphenyl sulfone.
Later, both in the US and the UK, future doctors, when describing this to them, said I was misinformed, that probably I was sick, these are not side effects.
No, they're misinformed, and I'm deeply suspicious of the medical profession.
I have something wrong with my HPA axis resulting in Cushing's syndrome that causes extreme anxiety, high hr & bp persistently. It's usually an adenoma or hypertrophy on a pituitary or adrenal, or metabolic syndrome.
What was the surgery like by the way? it sounds painful.
Antibiotics are poison to bacteria.
The difference here is that you're not a bacteria and can safely metabolize the drug itself.
Chocolate is poison to dogs. Not to humans.
One course of an antibiotic isn't going to rot your brain or nerves... and even then, chronic use isn't a problem but for a small percentage of people who do experience these adverse reactions.
All eurkaryotic cells have little trapped bacteria inside themm -- your mitochondria. The mutualistic cooperation between the mitochondria and the surrounding cell is an ancient and delecate dance.
And lo and behold, mitochondrial toxicity from antibiotics is a thing, and fluoroquinolones are suspected to cause it.
If someone wants to claim an approved medication is especially poisonous, the onus should be on them to provide evidence. Note that the great-great-grandparents 3 links are all individual case studies. One of them summarizes the situation: "overall, the frequency and severity of adverse events are rather low".
If one person experiences it in a trial of a group of, say, 60... That becomes a risk of 1.6% in the side effects profile.
Real world cases would be much, much, much lower to the point to where doctors in the ER wouldn't even know what they're looking at when it happens. Sometimes it gets diagnosed as a 'drug eruption' or an allergy, when it's more an immune hypersensitivity response.
I know anecdotal isn't what people want around here, but I had a reaction to Sulfa that was later diagnosed as Stevens Johnson Syndrome. The doctor who prescribed it to me never personally saw a case of it herself until I came along. Even then, she sent me to a dermatologist first.
https://www.webmd.com/drugs/2/drug-5530/bactrim-ds-oral/deta...
However, It's commonly listed at the top of the side effects list for this drug.
https://en.wikipedia.org/wiki/Stevens%E2%80%93Johnson_syndro...
Actual incidence of the syndrome?
> SJS is a rare condition, with a reported incidence of around 2.6[10] to 6.1[26] cases per million people per year. In the United States, about 300 new diagnoses are made each year. The condition is more common in adults than in children.
Up to 6 cases per million per year across ALL drugs and not just the one I mentioned here.
Even common over the counter medications like Ibuprofen is known to cause SJS. The odds, however, are vanishingly small.
The risk exists, yes, but the perspective needed is that when you see percentages reported... that's not a "1.5% chance", that is "1.5% of those in a particular group experienced this side effect while 98.5% did not."
This information is typically provided in the published drug facts for each medication.
https://pubmed.ncbi.nlm.nih.gov/2686432/
https://www.rxlist.com/cipro-drug.htm#dosage
Studies provide further info.
> or what doseage that occurs at or what causes this reaction in the subpopulation?
It's through trials they discover the incidence of side effects and appropriate dosages for maximum therapeutic benefit.
> You don't and just wave that off, that's why it's flippant.
Nobody is waving anything off when providing perspective.
https://en.wikipedia.org/wiki/Steroid_dementia_syndrome#Case...
I was on prednisolone for a couple of months a few years ago. I can't say I was very intelligent before that, but it's certainly took a toll on my memory and cognitive abilities. (No, it's probably not hypochondria, I didn't even know corticosteroids could have such consequences when I noticed the problem.)
> The medications included prednisone, and methylprednisolone, plus albuterol, beclomethasone, dexamethasone, cromolyn, salmeterol and clarithromycin.
> The treatment with steroids was stopped and three years later (while still taking buspirone, albuterol, fluticasone and salmeterol inhalers, loratadine and theophylline)
Yeah, this was more than just one steroid doing something to him. When you have a situation where someone is on that many different medications, it's no longer a case where you can simply point to one thing and say "that caused it." There's no telling what other underlying conditions were exacerbated in the process and what side effects may be due to the drugs NOT discontinued.
The above sounds like nuclear option amounts of asthma meds and it's reasonable to expect potential long term effects.
That being said, inhaled steroids are considered much, much safer than oral ones, due to much smaller doses and targeted effects.
The issues lasted about 6 months, during which time I took a few daily supplements recommended in the research I found. I seem to have fully recovered but I've read about others not so fortunate.
Confident asides as in '(we) can safely metabolize the drug itself' are unhelpful and indeed wrong for certain people.
https://www.forbes.com/sites/judystone/2015/11/09/common-ant...
"Macrolide antibiotics caused an additional 36 sudden cardiac deaths per million treatment courses. So about 1:8,500 patients will develop a serious arrhythmia, or irregular heartbeat, and 1:30,000 would die because of the antibiotics."
Splitting hairs to point out exceptions doesn't change the rule.
Though it seems a bit unusual that drops in one of my ears would first cause symptoms in a leg. OTOH, that would be a curious coincidence... Luckily the pins and needles were only mild and transient, so if there was a causation I hope it was only temporary.
> Compared to a potent eukaryotic DNA topoisomerase type II poison ... ciprofloxacin produced comparable dose-dependent SCE frequency increases.
Translated: Compared to a chemotherapy drug designed to cause DNA breaks to prevent cell replication, ciprofloxacin produced similar "sister chromatid exchange" counts, which happen when damaged DNA strands need to pull in duplicate material from "sister" strands.
Counting SCEs is also used to measure human DNA mutations from things like carcinogens and radiation.
A sibling comment (https://news.ycombinator.com/item?id=26473638) mentions the difficulty of acquiring pre-event context for these kinds of situations. Could this sort of testing be useful here?
They're used to treat antibiotic resistant infections in "hard to reach" places, since the fluorine moiety allows them to penetrate most places in the body (which is also likely related to how they cause insidious damage). This power+reach makes them a default drug for some doctors to treat infections.
But doctors can be a stubborn bunch, and many still prescribe it way too liberally.
they're well compensated by pharmaceutical companies.
Many don't know any better and have a poor grasp of the scientific method. For many being a doctor is more of a trade than a profession.
Their scope of work is too broad and they're far too busy to keep up. As a result, they're perhaps even more susceptible to marketing than average people. They don't have time to dig into pubmed and deeply understand something they see (generously) 1% of the time.
They have to rely on people who otherwise get paid to do the research. If there's no money to be made from a treatment, it won't be able to donate to universities, fund studies, or pay for advertising.
Doctors won't hear about it.
I probably took at least four more pills than I should have, even though I had a bad reaction after the first pill, I assumed it was something else that was causing it at first.
Glad I eventually made the connection, read some horror stories to confirm the likely cause, and called the doctor to switch my antibiotic before I had taken all 30 pills. Might be a lot worse off now if I had.
They should be used rationally though. Ciprofloxacin and other antibiotics in the same class are stronger medications compared to penicilins for example. The ideal situation is to figure out what the bacteria is sensitive to with a culture and antibiogram and then choose the weakest, most specific antibiotic out of that list. Of course, this requires time and resources which may not be available. In some cases, it's been proven that waiting for test results leads to worse patient outcomes so doctors will prescribe antibiotics empirically and adjust treatment later.
But isn't antibiotics something that gets given out in many countries for more or less anything? The US comes to mind. Which to my knowledge is the reason why more and more people in those countries dies of resistent bacterias.
I'm 35 and have been given antibiotics twice in my life, and reading about people getting antibiotics for a cold baffles me.
Yes. Antibiotics have a rich history that dates all the way back to the second world war. Before the risk of bacterial resistance became well-known, use of antibiotics was much more widespread. Understanding of bacterial resistance came after they developed mechanisms to resist the drugs used to treat infections such as betalactamase.
It could be the case that cipro- and levofloxacin are widely prescribed in the USA because bacteria have already become resistant to weaker drugs. Treatment guidelines in my country have more effective options compared to CDC sources. I have no first-hand experience though.
Stronger antibiotics also happen to be very easy to use. It's generally much easier to successfully treat someone with a strong antibiotic than a weaker one. One pill once a day for three days is much easier than 3 or 4 pills at regular intervals every day for 10 days. Getting people to take pills correctly is an every day challenge in medicine, complicated treatments means people will often forget to take their pills and reduce their effectiveness.
About colds - perhaps it's when doctors don't first wait for the test result for a streptococcal throat infection?
https://medical-dictionary.thefreedictionary.com/streptococc...
There's some corruption going on in the data, perhaps? There are so many anecdotes from this class of drug, they cease to become 'just anecdotal.'
In the US, in the early 2000s there was an anthrax terrorism scare where they tried giving thousands of people Cipro pre emptively.
Furthermore, compounds that will work are often constrained by many factors.
I had my own bad experience with them, and know others who did as well.
I have pretty severe myopia, and had laser treatment for tears in it earlier, so have to be very careful about these drugs I guess...
I'm not saying antibiotics don't do any damage, I'm just saying that in such a case those would be at the back of the blame list...
Permanent nerve damage (neuropathy, pins and needles, tingling, muscle weakness, spasms, muscle twitches, heart palpitations) is a known side effect. There's been no attempt made to study if there's any long term delayed brain effects from fluoroquinolones. "Brain fog" is a commonly reported symptom of those who experience fluoroquinolone side effects. I hope there will be more studies on long term brain health from these drugs, as they're given out liberally.
[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6006604/
[2] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7667412/
[3] https://pubmed.ncbi.nlm.nih.gov/10832955/