5 ms·

I can attest. This happened to my wife 15+ years ago. The reaction began after two doses of Levaquin and was 3 months of non-stop living hell. Seriously painful

by ctrlp 6y ago

I can attest. This happened to my wife 15+ years ago. The reaction began after two doses of Levaquin and was 3 months of non-stop living hell. Seriously painful neuropathy, burning all over her body. Profuse sweating all night. Brutal nightmares. Brain fog. Crippling pain in her appendages, melting walls. Extremely distressing. 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.

ctrlp 6y ago
There was a book, Bitter Pills, by a journalist who's wife had years long neurological side effects from a flouroquinolone, iirc. It's an investigation into the world of drug testing, prescribing, and side effects. https://www.amazon.com/Bitter-Pills-Inside-Hazardous-World/dp/055337852X https://www.amazon.com/Bitter-Pills-Inside-Hazardous-World/d...
throwaway584568 6y ago
> The doctors were completely dismissive of and uninterested in the symptoms 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.
- rattray 6y ago
  Yikes, thank you for sharing your experience! Sounds dreadful. What country is this in?
- loceng 6y ago
  Was the cause of this an antibiotic? Could there have been any other cause? Did you have any surgeries or injuries around the same time the symptoms started? Did you ever have LASIK eye surgery?
  - randycupertino 6y ago
    Curious why you asked re: LASIK? Are the antibiotics given for that similar to what could cause the loss of myelin?
    - loceng 6y ago
      Thought I replied to this, odd. I don't know what antibiotics they may give after surgery. The reason I asked is some people develop severe corneal neuralgia that has/causes whole body symptoms - central sensitization, hyperalgesia - which sounds somewhat similar to small fibre neuropathy.
- kristjansson 6y ago
  > topical capsicain Is that what (and as painful as) it sounds like!?
- loceng 6y ago
  I'm unsure of the antibiotics they give post LASIK if they ever do, I'm curious as there is a severe symptom some people get after LASIK called corneal neuralgia that can have similar system wide symptoms to small fiber neuropathy.
beaconstudios 6y ago
in my own experience (with my wife's chronic condition), most doctors are extremely dismissive if they don't have the answer off-hand. I don't know why this is - but reactions ranged from saying she was lying or was addicted to painkillers (despite not asking for painkillers) to switching back and forth between two common diagnoses even though they were quite clearly inaccurate. I have no faith in the front-line medical system to be able to deal with anything less blatant than a broken bone or a flu, if only due to what appears to be doctors' near-universal refusal to respond to uncertainty with humility and curiosity.
- Arete314159 6y ago
  After many similar experiences with doctors, I have reluctantly come to the conclusion that about 80% are only interested in time preservation and ego preservation. 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."
  - pnutjam 6y ago
    ...2 minutes, if you're a woman... 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.
AnIdiotOnTheNet 6y ago
> The doctors were completely dismissive of and uninterested in the symptoms -- it really shook my faith in medical practice. 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.
- mariodiana 6y ago
  > 90% of them are just shit at their jobs. As the joke goes, "What do you call the person who graduated last in his or her class in medical school? Doctor."
  - tartoran 6y ago
    Funny joke but I really don't believe a good test taker does make a good doctor. It might in fact make for more arrogant doctors.
    - killjoywashere 6y ago
      Real life impact of Dunning Krueger indeed.
- tartoran 6y ago
  Doctors do save many lives but I fully agree a whole lot of them are indeed terrible at edge cases and what's worse is the arrogance they display when one tries to explain the symptoms clearly. Some of them go as far as recommending a psychiatrist when it is really not called for (sure, there are instances of hypochondriacs but how about the rest who aren't? ).
- adkadskhj 6y ago
yellowcake0 6y ago
I'm sorry to hear about what happened to your significant other. 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.
mancerayder 6y ago
>The doctors were completely dismissive of and uninterested in the symptoms -- it really shook my faith in medical practice. 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?

by ctrlp 6y ago

ctrlp 6y ago

There was a book, Bitter Pills, by a journalist who's wife had years long neurological side effects from a flouroquinolone, iirc. It's an investigation into the world of drug testing, prescribing, and side effects. https://www.amazon.com/Bitter-Pills-Inside-Hazardous-World/dp/055337852X https://www.amazon.com/Bitter-Pills-Inside-Hazardous-World/d...

throwaway584568 6y ago

> The doctors were completely dismissive of and uninterested in the symptoms 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.

rattray 6y ago
Yikes, thank you for sharing your experience! Sounds dreadful. What country is this in?
loceng 6y ago
Was the cause of this an antibiotic? Could there have been any other cause? Did you have any surgeries or injuries around the same time the symptoms started? Did you ever have LASIK eye surgery?
- randycupertino 6y ago
  Curious why you asked re: LASIK? Are the antibiotics given for that similar to what could cause the loss of myelin?
  - loceng 6y ago
    Thought I replied to this, odd. I don't know what antibiotics they may give after surgery. The reason I asked is some people develop severe corneal neuralgia that has/causes whole body symptoms - central sensitization, hyperalgesia - which sounds somewhat similar to small fibre neuropathy.
kristjansson 6y ago
> topical capsicain Is that what (and as painful as) it sounds like!?
loceng 6y ago
I'm unsure of the antibiotics they give post LASIK if they ever do, I'm curious as there is a severe symptom some people get after LASIK called corneal neuralgia that can have similar system wide symptoms to small fiber neuropathy.

beaconstudios 6y ago

in my own experience (with my wife's chronic condition), most doctors are extremely dismissive if they don't have the answer off-hand. I don't know why this is - but reactions ranged from saying she was lying or was addicted to painkillers (despite not asking for painkillers) to switching back and forth between two common diagnoses even though they were quite clearly inaccurate. I have no faith in the front-line medical system to be able to deal with anything less blatant than a broken bone or a flu, if only due to what appears to be doctors' near-universal refusal to respond to uncertainty with humility and curiosity.

Arete314159 6y ago
After many similar experiences with doctors, I have reluctantly come to the conclusion that about 80% are only interested in time preservation and ego preservation. 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."
- pnutjam 6y ago
  ...2 minutes, if you're a woman... 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.

AnIdiotOnTheNet 6y ago

> The doctors were completely dismissive of and uninterested in the symptoms -- it really shook my faith in medical practice. 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.

mariodiana 6y ago
> 90% of them are just shit at their jobs. As the joke goes, "What do you call the person who graduated last in his or her class in medical school? Doctor."
- tartoran 6y ago
  Funny joke but I really don't believe a good test taker does make a good doctor. It might in fact make for more arrogant doctors.
  - killjoywashere 6y ago
    Real life impact of Dunning Krueger indeed.
tartoran 6y ago
Doctors do save many lives but I fully agree a whole lot of them are indeed terrible at edge cases and what's worse is the arrogance they display when one tries to explain the symptoms clearly. Some of them go as far as recommending a psychiatrist when it is really not called for (sure, there are instances of hypochondriacs but how about the rest who aren't? ).
adkadskhj 6y ago

yellowcake0 6y ago

I'm sorry to hear about what happened to your significant other. 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.

mancerayder 6y ago

>The doctors were completely dismissive of and uninterested in the symptoms -- it really shook my faith in medical practice. 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?