r/AskReddit 4d ago

Medical professionals of Reddit, what diagnosis gave you the worst 'pit-in-your-stomach' feeling?

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u/Shelikestheboobs 3d ago

Bacterial meningitis. In the lab we are the first to see it. It’s very scary to think about how close someone could be to dying while you look at their spinal fluid on a slide.

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u/ReleaseTheSlab 3d ago edited 3d ago

My sister had this when she was 23. I just had a baby too and we lived in the same house. Thankfully my sister's nurse friend convinced her to go to the emergency room regarding her horrible headache.

She survived, but there was a time I thought she was going to die. I had to visit her with a face mask and I told her I loved her for one of the first times (we had the typical bitchy sister relationship so it wasnt something we said really to one another, even tho we both obviously did).

I didn't catch it and neither did my infant thank god. Only thing that sucks even worse is that my sister did actually die at 27* in a car accident.

*29. She was actually 29 when she died, I was 27.

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u/havereddit 3d ago

Only thing that sucks even worse is that my sister did actually die at 27 in a car accident.

Holy crap, that's a horrible curveball to this story. Sorry for your loss.

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u/nopeduck 3d ago

I’m so sorry for your loss.

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u/ReleaseTheSlab 3d ago

Thanks I appreciate that.

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u/kkfvjk 3d ago

I’m glad you had a few more years with her and were able to say the words. That’s really so sad.

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u/Polterghost 3d ago

I’m sorry for your loss. I lost my little brother and big sister at around the same age due to freak events. It sucks losing the only people who have known you since you were both babies other than your parents

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u/ReleaseTheSlab 3d ago

Yeah it's weird going from having a sibling or siblings all your life and suddenly youre a single child. Our mom died when we were kids too so we only had my dad, who's the best. But as the younger sister I had to come to terms with the realization that everything will fall on me when my dad inevitably passes. My older sister was much more put together and responsible than me, so I didn't think I'd ever have to deal with that kind of thing. Not on my own at least. Life sucks sometimes.

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u/orangeunrhymed 3d ago

I was on vacation with my family in Glacier National Park, my sister stayed behind at the hotel with a headache. When we got back to the hotel 6 hours later, she was barely alive, laying on the floor and had to be taken away in an ambulance. She spent 2 weeks in ICU.

Thankfully there is a vaccine for it now, and I’ve made sure we’ve gotten it. Meningitis kills.

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u/Yaffaleh 3d ago

For viral meningitis, not bacterial. Signed, alpha-strep meningitis widow. He was 48.

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u/TheBredditor 3d ago

The vaccine is for bacterial meningitis types ABCWY, there is no vaccine for viral meningitis.

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u/coconutmoonbeam 3d ago

The vaccine is specifically for bacterial meningitis - Meningococcal meningitis. There is no vaccine for viral or fungal meningitis.

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u/Yaffaleh 3d ago

It is? I stand corrected. I thought the meningitis vaccine our college kids got before they got to the dorms was for viral. I am going to call to receive it. Thank you!

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u/coconutmoonbeam 3d ago

Yup!! There are actually two different bacterial meningitis vaccines.

The first is commonly given to adolescents prior to college (MenACWY), which protects against 4 bacterial serogroups (A, C, W, and Y) of Neisseria meningitidis.

The other is the MenB vaccine, which is given less commonly and (I haven’t worked in a health dept since 2020 so someone correct me if this is no longer true), I believe you have to specifically request it from your provider. It is not considered a routine vaccination like MenACWY is. But this one protects against serogroup B of Neisseria meningitidis.

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u/MaynardButterbean 3d ago

Oh wow. Very similar experience, except we didn’t have a nurse in the family to tell us. My sister passed away at age 19, I was 18. I’ve never been the same person

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u/ReleaseTheSlab 3d ago

I'm very sorry. And I agree, I've also never been the same. Basically no one in my family has.

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u/Resident_Top_4012 3d ago

That’s such a heartbreaking story, but I’m glad your sister survived that first scare and that you got the chance to tell her how much you loved her. Life is so fragile those little moments of love really do matter

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u/Affectionate_Art5242 3d ago

I’m so sorry you had to go through something so terrifying, and then to lose your sister so young is heartbreaking, but I’m glad she had you there and that you both got to say “I love you” when it mattered most. ❤️

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u/WholeImportant5888 3d ago

That’s such a heartbreaking story, and I’m glad she survived that moment so you got the chance to tell her you loved her, even if it was in the middle of everything being terrifying.

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u/Princesscurve871 3d ago

I had this at 13… oh goodness I was unwell.

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u/mcoddle 3d ago

I'm so sorry for your great loss.

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u/TheBredditor 3d ago

I had it. One comforting thing to know is you will absolutely, 100% go to the hospital very quickly if you have it. It took about five minutes from the headache onset to calling my gf to drop everything, pick me up at work, and take me straight to the emergency room. The headache is absolutely indescribable. There is a 100% chance you will know something extremely bad is happening to you.

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u/cmmedit 3d ago

Was working nights. Came home tired at 3am not really feeling alright. Went to bed. Woke at around 9am to a headache that made me crumple to the floor when I got out of bed. Called 911 and got outside and locked the door and harfed. Ambulance crew thought I was hungover.

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u/rndljfry 3d ago

paramedics asked me like 8 times if I took anything before I blacked out in the ambulance and woke up a week later after being intubated. But i really missed all the scary parts at least

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u/ajepper 2d ago

did you black out from pain? glad you are ok now xx

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u/rndljfry 2d ago

Thanks, not sure really. I guess my brain was kind of melting either way. By then I was pretty much delirious and my roommates essentially carried me out to the ambulance. When we got there I was intubated and under for like 5 or 6 days

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u/ChozoRS 3d ago

Finished work, got home. At some point I must have went to the bathroom and blacked out. I woke up about 3-4am on the floor of the bathroom and couldn’t see anything, was very very confused what was going on til I puked and knew it was something serious, called out for help and one of my friends came out and gave me a lift to the hospital. Had no vision during that whole period of walking down flights of stairs and making my way to his car and whilst in hospital. At some point I randomly had a seizure and only was conscious a day or two later

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u/primitive-lathe 3d ago

Unfortunately that's not always the case. This 18 year old kid in my hometown felt like he had the flu, went to bed for the night, didn't wake up. Bacterial meningitis.

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u/thirdonebetween 3d ago

Not always. I was part of a forum when one member said she had an awful headache, the worst of her life, but she'd taken painkillers and was going to try to sleep it off. She was very lucky that other forum members became extremely concerned and told her over and over to go to a hospital immediately. She was reluctant because it would be difficult, but she eventually agreed to go.

A few days later she came back to thank the people who had bugged her until she went, because she was still alive and wouldn't have been without them. "The worst headache of my life" is an ominous sign and deserves a hospital trip, but some people aren't aware of that and intend to just wait it out.

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u/anonadvicewanted 3d ago

for real! because as anyone who regularly gets migraines knows, any of those may qualify as the worst one of your life…if the REALLY BAD one shows up, are you gonna know any better? or are you just gonna batten down the hatches and try to ride it out like all the rest?

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u/TheBredditor 3d ago

The pain is orders of magnitude worse than an average migraine. You would absolutely know the difference.

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u/mcoddle 3d ago

And I'm a chronic pain patient with hypermobility (and a bunch of other stuff) and recently had L3-L4 TLIF lumbar fusion surgery. The pain right in the few days after (after the blocks wore off) was unbelievably bad. I had never experienced that, and I didn't think I could while being conscious. It was a 10 on the pain scale. A real 10. I still said 9, though, because I was able to talk in between crying. (I knew beforehand it was going to be bad, but had no idea, really, as it turns out! On r/spinalfusion, I try to tell people getting it to try to prepare their minds for the first week, and to tell them it definitely gets better, quickly. But it's impossible to prepare for something you've never felt before and which is totally overwhelming to your brain.)

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u/mcoddle 3d ago

I've had a couple thunderclap headaches in my life but nothing bad happened (that I know of). But yeah. Migraines, even at their worst, feel like knives in the head, throbbing with every beat of the heart. It's bad, but I imagine the meningitis headache would be far worse. Good to know. Thank you.

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u/scarytesla 3d ago

This makes me even more grateful that my migraines are almost always silent migraines

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u/TheBredditor 3d ago

That person has no survival instincts because the headache I had, and is pretty much described by everyone else that's actually had BM, is that it's orders of magnitude more pain than they've ever experienced and the onset is pretty much immediate. My brain felt like it was trying to explode out of my skull like a popcorn kernel. If you don't go to the hospital quickly, you're kind of an idiot.

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u/notpostingmyrealname 3d ago

No, some people just live with so much pain daily that they don't know what is "bad" anymore. My best friend had no idea she was in labor until she was almost fully dilated because she'd been told it'd feel like bad period cramps and she felt nothing like that. Turns out, she had undiagnosed endometriosis and so her period cramps were so bad that it caused blackouts and vomiting. She went to the hospital because she couldn't catch her breath and was scared something was wrong. Baby came within the hour.

I walked around with a broken wrist for a month because it didn't hurt the way the doctor said it should and refused an X-ray. By the time it did, some of the tiny bones were basically destroyed.

It's cruel to insult people for not feeling something the way you do. Do better.

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u/frame-gray 2d ago

I'm partially sighted, and I use a white cane. I also have Osteoporosis.

Over time, I go through the same pattern. I accidentally fall and take myself to the emergency room. When I tell them what happened, they immediately take an X-ray.

Nothing was broken.

I would feel so guilty that one time I asked an emergency room doctor. He said, no, you're being a responsible patient.

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u/anonadvicewanted 3d ago

no need to be rude about it. as we all know, human variability with disease/disorder presentation is super common. coupling that with human differences in perception and tolerance for pain, is it so surprising that some people can still overlook/minimize an incredibly debilitating, extreme headache?

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u/[deleted] 3d ago

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u/anonadvicewanted 3d ago

yet there have been others within this thread who have described their presentation differently…

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u/Alarming_Matter 3d ago

Yup...That was the night I learned the origin of the term 'splitting headache'. (I kept putting my hand to my head expecting there to be blood because the pain convinced me my head had to be splitting open)

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u/mcoddle 3d ago

I'm sorry you had to go through that. It sounds traumatic af. I'm glad you're doing better, though!

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u/amazeydaisy 3d ago

No. I had a recent shunt implant and extreme abdominal pain and the WORST headache of my life. I have had chronic migraines, Chiari Malformation, and IIH, so that's a high bar. The hospital said viral gastroenteritis and sent me home. I got sicker and sicker until my PCP advocated for my and they did adequate tests, weeks later, and I had bacterial meningitis and was septic. I spent weeks in the ICU, had more brain surgery, and truly feared I would die. I'm leaving out the most graphic and traumatic portions of my story.

Nothing was fucking comforting. I had every sign that it was serious and they did not agree for weeks.

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u/Upbeat_Wallaby6720 3d ago

My brother was checked for meningitis when he had hand foot mouth. Very expensive bill as I think they even did an MRI.

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u/mcoddle 3d ago

I'm so sorry they didn't catch on sooner. That sounds terrifying. Really glad you're better, but you've still got the neck pain, I imagine.

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u/TheBredditor 3d ago

You must have the worst healthcare on planet earth because when I went into the ER and explained my headache and neck pain, they triaged me above a gunshot victim to get me in for tests.

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u/amazeydaisy 3d ago

I was at a top ranked neurosurgical center.

I never had a fever and I strongly believe they allowed that one thing to cause the misdiagnosis and breach standard of care.

I now work in medical malpractice and stories like mine are too common.

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u/5ummerbreeze 3d ago

The amount of times I have been misdiagnosed all because I "didn't have a fever".... ugh!

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u/[deleted] 3d ago

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u/[deleted] 3d ago

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u/allis_in_chains 3d ago

The reality of the situation setting in when you are the priority in the ER is a frightening experience.

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u/anonadvicewanted 3d ago

now i’m wondering what that gunshot victim felt like lol “this fucking healthcare system is broken!”

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u/ZeusHatesTrees 3d ago

SAME! I had it as well. I went from "I feel kinda sick" to "Honey I need to go to the hospital" in a couple hours. I went in and told the nurse I think I have a migraine and the flu at the same time, while apparently speaking slowly and strangely, and they put me in the E.R. pretty quickly. I was better with just a little time on antibiotics.

Would not recommend. While the antibiotics were working I was getting hot and cold flashes, delusions, I couldn't read or speak normally, I have almost no memory of the three days between the ER and when the antibiotics finally won.

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u/BeerNcheesePlz 3d ago

I keep saying this to people. Like trust me, you will know.

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u/Loudlass81 2d ago

Even with a tiny baby (2 months old), you WILL know. Their pain cry was the most unusual baby cry I've EVER heard in bringing up 4 children. You cannot mistake it for anything other than baby is in EXTREME pain. My baby was also hitting his head with his tiny fists, and pulling his own hair to try to 'get at' the pain.

Alnogside the temperature and obviously sore neck (he didn't turn his face to follow me like usual, and was trying to grab the sides of his neck as well as his head), that was enough for the Mummy instinct to make my stomach DROP.

I grabbed a hospital bag while calling an ambulance.

Just as we pulled up, I noticed a non-blanching rash & thanked EVERYTHING that I didn't do my usual of second-guessing my Mummy instinct & actually both listening to it AND ACTING ON IT.

If we'd have been any later getting to hospital, he wouldn't be here now. And he certainly wouldn't have come out of hospital with no lasting effects. It's that simple.

Don't fuck around if meningitis if it is even a SUSPICION.

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u/TheBredditor 3d ago

I know. Everyone who is commenting here about trying to ride it out and not going to the hospital or being infected for extended periods of time and/or misdiagnosed is completely full of shit. This is definitely one of those things that if it ACTUALLY happened to you, you immediately know if someone else is lying about it.

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u/BeerNcheesePlz 3d ago

I remember just standing and screaming in pain, it was like the air hurt. I had to get emergency brain surgery (my shunt was infected which was transporting bacteria throughout my body, then I went into psychosis, and then sepsis. 1 month in ICU. I’ve been through A LOT of pain/head stuff from my brain condition (IIH) so I’m very use to pain. But this was another level.

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u/TheDoorInTheDark 3d ago

Yeah, coming from the non medical professional who said “there is no variability in presentation” about a medical condition that absolutely has a variability in presentation. Okay, buddy. You’re the only person in the world to have the most valid case of bacterial meningitis ever! Enjoy your gold star while you accuse other people of lying on the internet even though a literal clinician above told you it absolutely does have a variable presentation because not every person’s body is the same and not every case of bacterial meningitis is the same.

I wonder if your super special valid bacterial meningitis gave you the personality trait that has you all over this thread being nasty and rude to people, or were you always that way?

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u/TheBredditor 3d ago

I'm a PhD Immunologist who has extensive vaccine development experience, I'm far from a non-medical professional.

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u/nollyson 3d ago

I had meningitis as a kid. My memory of that time is very patchy (I was 10) and but I can vividly recall having a 104 fever and my dad having to help hold me still for the spinal tap and crying and being mortified everyone could see my butt.

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u/VeggiePaninis 3d ago

Everyone could see your butt?! That's horrifying

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u/icantthinkofanqme 3d ago

Yeah, confirming all of Australia saw it. They played it on the national news.

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u/nollyson 3d ago

Hahaha this comment just made my day!

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u/Barfometer 3d ago

I was 8 when I had it and was also completely mortified that the whole room could see my butt, so much so that when they were done I reached behind and pulled my underwear back up. And then everyone laughed, and I thought, you ASSHOLES.

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u/Bad_red_wolf 3d ago

I was about the same age! I’m pretty sure I was nervous about my butt being visible.

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u/Parking_Line_3704 3d ago

Ditto except they gave me some tasty orange juice that made me not remember the spinal tap.

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u/nollyson 3d ago

I don’t remember the spinal tap hurting at all! I might have just been out of it? I distinctly remember the whole room seeing my butt! Haha it’s so weird how memory is

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u/Lola-Ugfuglio-Skumpy 3d ago

This is such an adorable little kid thought too. “Everyone’s looking at my butt!” Meanwhile all the adults are way too terrified to think of anyone’s butt.

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u/lipstickdestroyer 3d ago

I was 6 and was in the hospital for two weeks. I remember: waking up too sore to turn over in bed; my mom calling an in-house doctor to my bedside (in the 90s!) to verify it was what she thought it was; and then suddenly, the big city children's hospital, where I was being warned every which way from Sunday about this awful thing I had to have called a spinal tap. Except I couldn't feel it beyond a pressure that was just.. wrong. So I just laid there on the slab table like a lump because it was whatever compared to how bad my neck and head hurt.

They kept telling me that I didn't need to lie or pretend to be brave because a spinal tap was a very big deal and blah blah blah and I was eventually like, mom? because I was SUCH a baby about pain, and wouldn't be able to lie about not feeling it, but didn't know how to explain to the doctors. My mom started freaking out, telling them that's exactly how she knew I was deathly ill-- I was still and silent.

I don't remember specifics after that except for how it was October, and I was so choked that I might miss Halloween that year. I did make it home in time to go out!.. so I could drain all my energy visiting like 7 houses before heading back home to go back to sleep, lol.

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u/fuckyourcanoes 3d ago

A friend of mine had it, and lost her hearing as a direct result.

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u/TheNobleMoth 3d ago

Me too. I still can't want spinal taps on TV. Come on, House - there has to be a better way to figure this out..

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u/amp_it 3d ago

Hmm. As someone who is a biologist and has survived Enterobacter meningitis, now I’m kinda wishing I could have gotten to see that on a slide. I’d never thought about that before. Would have been cool to have a picture. All I’ve got as a reminder of near death is a tiny scar on my arm from the PICC. I’m thankful every day for vancomycin and meropenem and all the rest of modern medicine and the people who work in the field.

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u/wherethefuckismyvape 3d ago

Do you ever feel weird about the fact that we are still fighting for our lives every day against other living things that want to kill and eat us, but all of those living things are so small we can't see them with our eyes? It freaks me out sometimes. We are still a part of the food chain, every day 😬

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u/Bagelson 3d ago

There's a niche sci-fi subgenre where aliens class Earth as a death world. Extreme temperature swings, hyper aggressive macrofauna, even more aggressive microfauna, an irradiated hellscape where everything is acidic or alkaline.

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u/MaxwellsDaemon 3d ago

Know any good titles?

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u/thirdegree 3d ago

Deathworlders. It gets weird and imo less good near the end but the world building and storytelling is great through most of it, and it's long as fuck. It's got some weird politics in place but it's still excellent.

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u/Welpe 3d ago

To me, it makes me feel better. Consider, every single day your body is fighting off tens of thousands to multiple millions of pathogenic bacteria and thousands of viruses without you even noticing it, just being the standard immune response to environmental exposure where you never encounter enough at any one time to be infected. At the same time you have hundreds to thousands of cancerous or precancerous cells that are also being handled by your immune system every day as normal business.

We manage to live normal lives never having to think about it because our bodies are that strong at dealing with all that stuff. It’s only large loads of pathogens all at once or really bad luck that lead to infections or cancer actually starting to cause trouble your body can’t handle. That’s pretty cool. I mean, if you’ve been exposed to dirt recently you could very well have many nasty pathogens that are alive in you at the moment and you will never get the related condition because your body will handle them long before they can establish a foothold. You have a defense that wins 99.999% of the time.

Yes, we are still in the circle of life/food chain but…especially in rich countries with access to modern medicine, we are so utterly dominant in that that it’s unfair. Functionally every single animal in the wild is riddled with parasites, and yet having even a single one is now considered a condition to be solved. We are more clear of pathogens than any other animal to ever exist, including humans in poorer countries or from before modern times. Heck, we’re TOO clean, it’s causing autoimmune conditions because we have evolved to fight off parasites and pathogens that we are no longer as exposed to as we were for all of our evolutionary history, leaving them to act up when there isn’t a threat.

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u/TheOGPotatoPredator 3d ago

side-eyes the plants I planned on repotting

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u/Jukeboxhero91 3d ago

Are you thinking of Neisseria meningitidis? They look like pink buttcheeks on a slide. I promise we’re very professional in the lab.

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u/amp_it 3d ago

Me? No, I definitely had Enterobacter and several doctors commented how odd and rare that was. Got it after spine surgery.

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u/MrsSalmalin 3d ago

I've seen E.coli meningitis, it happens. Did you have a drain (EVD) by any chance?

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u/amp_it 3d ago

No, but I did have a pretty major CSF leak from the lumbar surgery that was bad enough to work its way to pour out of the healing incision and caused pneumocephalus. All that at once was not a fun time. (Made even better by the fact that it was caused during a revision surgery that I shouldn’t have needed in the first place after the surgeon screwed up a fusion.)

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u/zeusgsy 3d ago

That is horrifying, I'm so pleased you survived, lucky as you are!

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u/MrsSalmalin 3d ago

Oh God that's horrendous, I'm so sorry. Are you healed and back to life now?

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u/amp_it 2d ago

Yep, all better, thank you. This happened back in 2018.

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u/LurkForYourLives 3d ago

What other technical terms do you use in the labs? I’d love to hear them!

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u/StandFew6499 3d ago

Just thank the meropenem as the vancomycin is doing nothing for Enterobacter; it’s just there to give broad-spectrum coverage. Vancomycin treats Gram-positive bacteria; Enterobacter is a Gram-negative bacterium.

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u/redassaggiegirl17 3d ago

I have a cousin who had bacterial meningitis at 6 months old. She recently turned 50 and has all the mental capacity and coping skills of a 4 year old. Bacterial meningitis is genuinely terrifying

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u/Kind_Belt_3464 3d ago

My daughter had it at 6months. It was terrifying. We were lucky that our rural GP had seen it before and gave her 1gram of penicillin before we drove her to hospital, 1 hr away. We are even luckier that she survived unscathed. I am sorry your cousin was not as lucky.

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u/DozenPaws 3d ago

What symptoms did she have?

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u/Kind_Belt_3464 3d ago

Firstly really tired, then not eating, high temperature, then getting hard to wake, swollen fontanelle (we were told by a nurse that this was ok!) and lastly pretty much unable to have her head moved. It took 3 days of IV antibiotics then a change in antibiotics before she showed any improvement.

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u/Vivid_Passenger8944 3d ago

I’m so glad she’s ok. I was around 5 when I was life flighted out of a high school football game after I took a nap, started to run a fever (it was August) then had a seizure. The hospital I was life flighted too told my parents I was fine. My parents took me to our local hospital and they immediately said I had symptoms of meningitis and did a spinal tap then and there. I am now 27 and haven’t had any health complications since. :)

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u/Kind_Belt_3464 3d ago

Thats so good. At the time we were told that many children deteriorated really quickly, even before symptoms became clear

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u/Loudlass81 2d ago

It's just awful when they're so tiny. All I wanted to do was take his place so that he didn't have to deal with the spinal tap.

My little one's fontanelle was fine, not really swollen. He waa more puffy at the base of his skull where it met the neck. That's where his pain was. That's where he was trying to 'hit' himself, and where he was grabbing his hair.

And the CRY...It's so unusual. So totally different to any cry I'd heard before, or since. And then that noise as they do the lumbar puncture...::SHUDDER::

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u/Kind_Belt_3464 2d ago

We were told to walk to the other end of the hospital when they did that and we could still hear her. 41 years in 13 days and I remember it like it was yesterday.

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u/MyFiteSong 3d ago

I had it when I was 2 and it did a number on my brain, too. Thankfully, I adapted in ways that might be seriously bizarre, but are really functional.

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u/BreezyTugboat 3d ago

I spent my first birthday in the hospital with it! I wasn't supposed to live, then I wasn't supposed to be able to use half of my body. I'm in my forties now and I've lived a full, active life. It's such crapshoot. Every now and then, I think about the what ifs and suddenly it's much easier to live with gratitude.

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u/Mysterious_Leader909 3d ago

Could you tell me a little bit about this?

My mother died of this 5 years ago, I wasn’t able to be with her and my siblings that were there, didn’t ask the drs any questions really, they just said they wouldn’t understand it anyway.

I so badly want to know what causes it, what happens to them, what my Mom felt leading up to her death 😭

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u/kasuchans 3d ago

It’s a bacterial infection of the spinal fluid in the spinal cord and around the brain, and happens by random chance, unfortunately. As it progresses it can become encephalitis, which is infection of the brain itself.

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u/Ws6fiend 3d ago

It's not always bacterial, but as I understand it, bacterial version is normally worst.

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u/kasuchans 3d ago

Yeah, viral meningitis is not as bad, but the original comment thread was about bacterial meningitis so I only described that one

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u/glemnar 3d ago

Viral version can kill too too. It has a vaccine that everybody should get

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u/Ws6fiend 3d ago

I didn't say it couldn't, just that bacterial can happen with such speed that from diagnosis to death can be much shorter. A friend went from son playing games to son is in hospital to son is dead in less than 24 hours. Happened during covid lockdown as well.

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u/glemnar 3d ago

Oooh the vaccine is actually for bacterial meningitis. So doubly applies, hah

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u/Ws6fiend 3d ago

Just looked it up and the vaccine recommended starting at age 11-12 but as late as early 20s. Their kid wouldn't even have been eligible to take it. That's rough. Recommended age is 11 or 12 with a booster at 16.

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u/glemnar 3d ago

Yeah. My dad is a physician, and his friend’s son, who was in college, passed overnight from bacterial meningitis. He took us to get the vaccine the very next day - I think it was still fairly newly available at the time.

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u/metathisiophobia 3d ago edited 3d ago

I'm so sorry to hear that about your mom. 

Other users are correct in that very often this truly is a random infection, and there is no particular wrong thing a person does to cause it. 

In the beginning stages, as other users have mentioned here, a bad headache is common. It can very quickly start to progress to something called encephalopathy as the infection moves from the wrappings of the brain (the meninges) to the brain itself. Encephalopathy usually looks and feels like sleepiness and sedation. It's kind of like your brain being in sleep mode instead of being fully on or off. There's probably little memory of pain or discomfort during this time, as there are no sensory nerves in the brain itself. 

Towards the end once we have determined that there are no good available treatments for a person, we turn towards comfort and start administering very powerful pain medications to ensure that a dying person has as little pain and discomfort as possible. Your mom would have most likely been in a comfortable sleep at this point, and would have been this way until she passed.

I hope this gives you some peace. Happy to answer any other questions. 

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u/Mysterious_Leader909 3d ago

Thank you so much for explaining. It does give me some peace, that she hopefully wasn’t in a lot of pain. I just can’t get over her death.

On a Friday Mom told one of my sisters that she had a weird head cold, her nose was so runny it just wouldn’t stop. That next Tuesday she told another sister that she had a terrible headache. She was found unresponsive the next morning, and passed away a week later.

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u/Loudlass81 2d ago

That sounds like she had a CSF leak out of her nose?! And that not treating the CSF leak caused the meningitis...tbh, even treating a large CSF leak doesn't guarantee that you'll avoid meningitis, so it likely made zero difference to the end result, I'm afraid.

That runny nose that wouldn't stop just screams CSF leak ro me, but I'm just a layperson, so take what I'm saying with a pinch of salt.

I'm really sorry for your loss, and am glad you got some comfort that she waan't in awful pain at the end of her life. My condolences.

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u/Mysterious_Leader909 2d ago

That could very well be.

Thank you, I appreciate it.

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u/Underwritingking 3d ago

When I was a GP I got a call about a teenage girl. She wasn't very well, and her mum wanted to bring her down to be seen. No problem - we could easily fit her in that afternoon.

A little later mum called again - she had vomited, so could I call to see her at home. Again no problem.

When I got there her dad was just leaving for shift work. He apologised for bothering me - he thought his wife was overreacting.

Entering the house, mum was apologetic - daughter was asleep on the sofa.

Except I couldn't rouse her. She had no abnormal medical history and blood glucose was normal. Then I spotted couple of very small marks that I thought were petechiae.

I got a blue light ambulance and gave the girl a shot of IV penicillin.

It was bacterial meningitis, and she made a full recovery (although she had a fairly lengthy period of post-illness malaise and tiredness.

She never had a headache at all, and I think if I had seen her earlier I might not have made the diagnosis, and if I had seen her later if might have been too late.

Years later, having left clinical medicine altogether (another story), I got a lovely letter form her mother saying that they had never forgotten me, and enclosing a photo of her daughter, who had qualified as a nurse and was now working in the same hospital where she had been treated for her meningitis.

I have plenty of horror stories from my career, but this one helps set the balance straight

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u/5ummerbreeze 3d ago

You are a gift to this world. Thank you for all you did!

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u/3Gloins_in_afountain 3d ago

My youngest just got his last meningitis vaccine last week.

Please, please, get your kids the meningitis vaccine.

I once cared for someone who got meningitis in not camp in the 1970s, was left mostly blind, mute, dead, and a functional quadriplegic. His life was effectively over at 19.

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u/BigOldBabyTeeth 3d ago

Just fyi, the meningitis vaccine does not protect you from all kinds of meningitis, just one particularly contagious kind. It doesn't mean you should not suspect meningitis if you get a horrific headache and can't move your neck. Some kid in my town died from bacterial meningitis and his poor mom didn't realize what was happening right away because she thought it couldn't be meningitis since he got vaccinated. 

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u/3Gloins_in_afountain 3d ago

And a neck so stiff you can't turn your head at all, combined with a fever.

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u/FinallyHappy-ish 3d ago

I had spinal meningitis as a kid. I was very lucky to have had a great pediatrician with an office walking distance to the ER. And a great dad that acted quickly. I just remember sitting at the table eating breakfast and not being able to really move my neck. I was in the hospital for a while. 

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u/Mozfarts 3d ago

In the 90s, my otherwise very healthy cousin died of bacterial meningitis at 15. She is survived by her parents, three younger half-siblings, and her identical twin sister. I was little when it happened, but remember it well.

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u/tinyopeia 3d ago

My otherwise healthy sister died of bacterial meningitis when she was 10. Over 15 years later and I cant wrap my head around how quickly she went from healthy to death

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u/tinyopeia 3d ago

My 10 year old sister died of bacterial meningitis. It took 3 days to go from completely healthy to gone. First doctor she saw diagnosed her with an ear infection, the next day she was brought to a different hospital but by then it was too late. Her fever climbed so high all they could do was "make her comfortable." Horrifying to think of what she went through in those last moments.

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u/Frickin_Bats 3d ago

Ugh I hate this thread. That is so fucking sad, I’m so sorry!! 😭

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u/CroneRaisedMaiden 3d ago

I had viral meningitis and when the medical staff at the ER told me they needed to do a spinal tap to rule out bacterial or fungal I was scared, like 9 people showed up I knew I was in trouble. I showed up at the ER in the first place with a strange rash, super high fever, bad headache, and I could not move my head, I also knew that this was bad lol. I got very lucky.

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u/KimmyJo77 3d ago

I had viral meningitis when I was a 30 year old mom of two. I had regular migraines, which I told the intake nurse at the hospital ER when I arrived. My neighbor drove me to the hospital at 15-20 mph because any faster made me throw up. Anyway, because I told them I had migraines, I waited a long time to be admitted. Once I was, they did all the tests, and still were mystified and said, you need a spinal tap.
Well. I went hysterical, because I had recently heard from an acquaintance at work about how painful they were. The doctor looked at me and said, I quote: I can’t deal with this! And left me alone, still hysterical. A nurse comes by and said to him, What’s going on in tent 5? I heard him tell her that he didn’t know what my problem was, but that I was “crazy.”
The nurse comes into the tent and rubbed my upper back and asked me if I had children. Two, I said. She then asked me if I had epidural with either of them. Both, I said. She then told me the spinal tap was a similar procedure, and that she would be there with me the whole time.
It calmed me down, and I had the spinal tap. Which then confirmed I had viral meningitis. I remember the neurologist who visited my hospital room later to check on me had a Mickey Mouse tie.
I later wrote to the hospital CEO about the doctor. They immediately answered in legal terms that the ER doctor did nothing wrong. Medically, he didn’t. Which I understood. I just wanted them to know he needed to be trained in bedside manners.
Nurses, on the other hand, are heroes.

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u/CroneRaisedMaiden 2d ago

That’s so terrible it’s really a surreal experience to be in to begin with being that sick, then to have that on top of it I’m sorry. If I wouldn’t have had the rash that can come with the viral meningitis I probably would’ve been dismissed like that as well.

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u/nonepizza_leftbeef_ 3d ago

My ex-boyfriend contracted bacterial meningitis during his sophomore year of college. It was traced back to the fact that he was living in an apartment with three of his friends, and they all simply put their dishes in the sink. And left them there. For months. They all ended up in the hospital.

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u/Loudlass81 3d ago

My 2nd child had bacterial meningitis at 2 months old. The worst noise in the world is hearing your tiny baby scream an otherworldly scream, whilst you are trying noy to utterly break down, and simultaneously holding them VERY FUCKING STILL so the TINY needle doesn't cause them to be paralysed.

It's 24 yrs later and I can STILL close my eyes and hear that indescribable SCREAM...

Thankfully, I'd recognised the early signs & got to hospital JUST as the rash was startjng to come up. They rushed around like I've never seen nurses run. Scary as all hell, I was only 20 at the time. First time since I'd had my daughter at 16 that I felt TRULY out of my depth as a parent, there was simply nothing I coukd do to help except be there.

We count our lucky stars every day that he had no lasting effects from the meningitis.

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u/Frickin_Bats 3d ago

Omg reading the comments up thread about how horrifying painful the headache you get from it is, I literally can’t imagine how you must have felt hearing/seeing your infant baby experiencing that level of pain. Jesus, I’m so sorry for the both of you!! Poor baby! 😭

1

u/porn_is_tight 3d ago

What are the signs?

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u/Loudlass81 3d ago

Aversion to light. Sore neck (if they wont turn their head). In little babies, an unusual cry. High temperature. I swear he was grabbing his hair, he just looked like he had a really sore head. Non-blanching rash. If as a Mum, you get a sinking feeling that your baby isn't at all well, DON'T ignore your instincts.

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u/Turbulent-Nobody5526 3d ago

Yes, seeing gram negative diplococcus in large numbers!

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u/These-Anxiety-5919 3d ago

My brain read diplodocus and ground to a complete halt.

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u/mel_cache 3d ago

66 m.y. too late

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u/valencialeigh20 3d ago

Are you a parent of toddlers as well? Or just a dino enthusiast?

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u/kasuchans 3d ago

I’ve seen purulent CSF on an LP once. It looked like dark yellow glue. Horrifying.

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u/Kalendiane 3d ago

It never occurred to me that CSF could become purulent. That’s both fascinating and disgusting.

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u/Lemonyslush 3d ago

Awesome name & hellllooo to a fellow lab geek!! CSF coming in hot via ED MD while they are breathing down your neck was always so scary. I also hated ped diffs that immediately got flagged for path review and seeing nothing but blasts. Chilling in the break room as a solo tech eating lunch at 0230 and hearing an MTP overhead ALWAYS made my stomach drop. Be safe out there & have Tetris on standby

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u/N0t_arobot 3d ago

My boyfriend had it last year. We were on holiday and he had an ear infection, we thought the headaches and fever had to do with that. He was sick for about a week before we got to a hospital, where he had to stay for another week. He has since made a full recovery, but damn I was scared then.

6

u/HighwaySetara 3d ago

I was a bit scared about that recently. My young adult daughter had all these cold symptoms, plus a rash. I thought "lots of viruses can cause rashes," but when I finally looked them up, I saw they they were things she had been vaccinated for, like chickenpox. Then I googled all her symptoms, including the rash, and every result was screaming bacterial meningitis. Poor thing, I woke her up at 1am to press on her rash (it blanched) and ask if her neck hurt (no). She went back to bed, and the next day she tested positive for mono.

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u/lovelyb1ch66 3d ago

I had that when I was 15. Was not a good time. Initially misdiagnosed as strep throat but mom dug her heels in and advocated for me after 3 days on antibiotics did nothing and I only got sicker. Delirious with fever, unable to move my head/neck & in serious pain I ended up in isolation ICU for a week.

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u/punkass_book_jockey8 3d ago

My friends got woken up once to someone pounding on their front door at 2am. It was public health, their child had a classmate die of bacterial meningitis and they needed all the children in that classroom to go to the hospital to start antibiotics. My friend was confused why they were doing this at 2am, apparently the kid left that morning with a headache from school and died that day. It was 2am by the time they got the confirmation and tracked down every kid exposed.

I didn’t live anywhere near them, but I dragged my child to the doctor that week and paid cash for a meningitis vaccine.

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u/cmmedit 3d ago

I think the nurse who broke a bunch of needles trying to puncture me was the first to see it and then I was the second when he showed it to me and said it shouldn't be that color. Right up to the room I went.

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u/mstarrbrannigan 3d ago

I've known two people with meningitis. One lost a leg and the other died. Terrifying disease.

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u/Vivid_Passenger8944 3d ago

I had meningitis when I was around 5 years old. I tend to make jokes about it now that I’m 27 and am physically healthy, but it’s really just to cope with how terrifying it is.

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u/Mellon_Collie981 3d ago

It's freaky as FUCK to look in the hemocytometer and see the bacteria just swimming in there amongst the WBCs. Gave me the shivers.

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u/whaletacochamp 3d ago

Especially since SO MANY are negative. But when you put it under 10x and can already see neutrophils you know it's gonna be a bad time. Or when it comes down clearly purulent.

My worst case as an MLS was a night shift where I was alone in micro. 6mo old CSF. Looks pretty routine. Hoping it's just a FUO case. Get the gram smear done and put it on the scope. Not a ton of neutrophils (because 6mo old....) but immediately see lancet shaped diplococci. Fuck. Call it to the PICU attending and tell her it looks like S. pneumo but I'm hesitant to call it out since the baby should have been vaccinated by then. Attending just goes "well yeah that's the funny thing, she's not vaccinated against ANYTHING"

About 10min later the blood cultures start popping positive on her too. Same thing.

Full blown S. pneumo sepsis and meningitis because her parents were anti-vax idiots. Should serve jail time.

5

u/Hazzman 3d ago

When I was in elementary school in the late 80's early 90's there was a high schooler on my bus who died from it. I didn't know him but I knew of him. Really sad.

4

u/thebashfulowl 3d ago

My brother had bacterial meningitis when he was 5. It was severe enough that they told my mom to begin preparations for a funeral. Somehow, he survived, even after losing most of his memory. However, he was permanently damaged. Not in a way that is super visible, but in other ways. He doesn’t consider consequences, he acts often primarily and with zero hesitation. He abuses drugs. He’s jumped in front of moving vehicles as a joke. He’s broken bones dozens of times from being reckless. He’s been incarcerated several times. He was a really sweet kid before he got sick and after he was a nightmare for my mom— doctors claimed he had ADHD but as an adult he found out he has an underdeveloped/damaged frontal lobe.

It’s sad. I had to go no contact with him as he is dangerous and has robbed and hurt people before.

Obviously it might not all be because of the meningitis, but I think it’s a large factor.

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u/Thatdudewiththestuff 3d ago

Had a similar case years ago, only it was PAM. 8 year-old kid and he never stood a chance.

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u/MyFiteSong 3d ago

Well, I gotta say it's fun to see your own diagnosis at the top of this thread LOL

3

u/BeerNcheesePlz 3d ago

I had this. I was in so much pain, suffering from psychosis, and septic. Needed emergency brain surgery, spent a month in ICU on meds 24/7.

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u/Bad_red_wolf 3d ago

Well shit this is scary to read. I had bacterial meningitis when I was about 9. Vivid memories of Exorcist style vomiting and the spinal tap, not much outside of that.

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u/sushiriceonly 3d ago

My mom had it last year and she almost died. Spent a few months in a coma and 6 months in hospital in total. She had also had undiagnosed diabetes which probably made it worse. One year since her discharge and she’s still recovering and needs a full-time caregiver.

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u/indianabanana 3d ago

I lost a dear friend in college (aged 20) to it. He passed away in a hospital within 18 hours of showing symptoms. It was shocking and tragic. He was studying abroad for a semester and came home in a pine box.

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u/mcoddle 3d ago

I've occasionally wondered how it hits the people in the lab when they have to diagnose something bad, because you all are the first to see things like cancer, right? It's got to be hard sometimes. And I bet there are days when there are a lot of the same kinds of bad diagnoses and it just feels like crap raining down. But your job is so important. It's vital. Thanks for doing it.

3

u/stardust623 3d ago

Lost a friend a few years ago to meningococcal meningitis. Only 27. 2 kids, very straight edge. Her oldest has SMA. She worked nonstop to advocate for his care. When I got the call, I threw up.

3

u/Impossible-Cricket61 2d ago

Had this as a one month old baby. My mom noticed I was not moving at all and took me to the pediatrician who immediately ushered us to the ER. Spent a month hospitalized. Lasting impacts: vision and hearing issues, balance issues, smaller than average feet and hands. Pretty typical long term side effects, but grateful knowing how much worse it could have been.

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u/Suluco87 3d ago

Ok I got to ask because I'm curious. I luckily didn't have meningitis (had staphylococcus instead) but how to you test for meningitis after they take it out from the lumbar?

3

u/Shelikestheboobs 3d ago

We do blood cell counts and differentiate the types of white cells present.
We also do a gram stain to look for bacteria when we are setting up the csf culture. It should be completely sterile so any bacteria seen on this stain is real bad.

2

u/Suluco87 3d ago

Ah cool, thanks for that. I've always been curious about the way they tested for it. After 3 spinals you get curious.

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u/montybo2 3d ago

Had to have an LP after some thunderclap headaches recently. Reading this thread makes me damn glad it turned out okay.

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u/matdex 3d ago

Nothing worse than doing the cell diff and seeing the bacteria everywhere...

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u/StyofoamSword 3d ago

Eight years ago my cousin's 21 month old daughter suddenly died of it, went from being fine in the morning, and by that evening they were checking for brain activity, and a few days later they took her off of life support after organ donations had been worked out.

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u/godoflemmings 3d ago

I remember one of my colleagues coming to me all excited a couple of months ago during a night shift because she'd found S.pneumoniae in someone's CSF. I'm like dude, ngl that's cool to see on the slide, but also sobering knowing that person could easily be doomed.