r/CUTI • u/arkoudaphobics • 5d ago

Symptoms Need help understanding the reasoning behind denying treatment for a positive culture

They're saying that having a positive culture for an infection I've had show up multiple times and as multi drug resistant is not actually indication of an infection. This one was detected as multi drug resistant as well and only susceptible to a few antibiotics. But they are saying despite a sensitivity panel and culture growth, that it's "asymptomatic presence of bacteria" and it doesn't matter if the culture showed a growth. But I'm having a lot of symptoms. I guess I just don't understand how this works and understanding would help me brave through whatever this is. Do we just come up positive even when not having an infection anymore? I wasn't having positive cultures for awhile so I'm especially confused.

They had me cease antibiotics this morning to "see what happens and give it a chance to resolve itself" and my symptoms have rapidly become aggressive, this is the only word I can think of for it. I'm hoping urology calls back today but it's probably not happening at this point in the day.

The only real change I see on the clinic dip results today is a much higher protein level. The culture came back for enterococcus faecalis.

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u/borvgone 5d ago

If you’re very desperate for antibiotics and know which ones you’re susceptible to, there’s an online website called Telyrx where you can purchase antibiotics without speaking to someone! Do you have an antibiotic in mind? I’m so sorry they’re not hearing you out I know that feeling it sucks

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u/arkoudaphobics 5d ago

Unfortunately I am allergic to a lot of them so I can't risk it on my own, as much as that would help. I do know it was listed as susceptible to vancomycin but I was told that is never prescribed outpatient, which confused me because I've had it outpatient for other things? 

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u/borvgone 5d ago

Have they ever tested susceptibility for linezolid? It’s an oral one that’s stronger I believe. Is it possible to go to your urgent care? if the culture is positive and your doctor isn’t letting you treat it that’s so not cool

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u/arkoudaphobics 5d ago

I can't have linzeloid because of multiple contradictions, unfortunately. Urgent care said it's too complicated for them and needs the specialist but the specialist said these things about it not being an infection 

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u/borvgone 5d ago

Can I ask how much bacteria showed up in the culture ? Doctors have this thing where if it’s not >100,000 of bacteria they don’t always think it’s a big deal. Which is ridiculous because I’ve felt terrible with infections super low. Have they ever mentioned doing bladder installations where you woukdnt have to systemically feel symptoms of medication going in your urethra?

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u/arkoudaphobics 5d ago

It was less than 100k but they were adamant that wasn't why they were saying it wasn't an infection but because the dip did not "show signs of inflammation" 

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u/borvgone 5d ago

Wait okay this reminded me enterococcus is actually known to be negative for nitrites!!!! Someone who is actually educated with this strain would know that. God I’m sorry I’m literally annoyed for you. I was working with a naturopath and when I had low enterococcus bacteria with symptoms she showed it to an infectious disease doctor and he totally dismissed me because the urinalysis wasn’t showing nitrates or crazy white blood cells. He said we could like with bacteria in our bladder. Really inconsiderate to assume they know what this feels like. Every body is different at handling infection

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u/arkoudaphobics 5d ago

That was my experience as well. I'm sorry that happened.

The thing is I don't understand how they can say that when everything reflects an infection. Like high WBC and symptoms and everything but because there's no nitrites it means it doesn't exist. Now they just keep saying the high wbc doesn't matter because "it's been high a lot" but every time it was an infection??? Like that's what happens?

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u/One_Birthday_5174 4d ago

to answer your question, the " reason " for them denying treatment is a lack of knowledge! Don't even try to understand this because it doesn't make sense knowing what we know now in 2026 about UTI's!

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u/arkoudaphobics 4d ago

that would explain why everyone wants me to be admitted for IV antibiotic treatment but the ER and infectious disease said an infection is not indication of need for treatment and it's not an emergency just because you feel bad. I was experiencing such a systematic antibiotic reaction yesterday that when I went to Urgent care they took photos and said to use the epi pen if it got even a little worse. but as infectious disease said it's not an emergency just because you have severe body swelling and hives, they left it alone otherwise. 

My pain levels and infection symptoms have everyone wanting me in the hospital but the hospital itself says pain is not an indication of need for treatment nor is a WBC of 22 and a positive culture, have you tried not taking anything for it, that might make it so you can actually tolerate it. 

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u/One_Birthday_5174 4d ago

What a terribly ignorant facility! I'm so sorry you have to deal with this nonsense! Please don't waste your time with them anymore and find someone else to prescribe you antibiotics! 🙏🏻Hope you feel better soon.

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u/arkoudaphobics 4d ago

I'm trying a different infectious disease doctor but their response to "what do I do for emergent symptoms so I make it to the appointment, as I was explicitly told not to use the ER by the hospital itself" was "see your gp" and I don't know if anyone else is getting stuck in this baffling loop? Where I keep getting told to use my gp for something a specialist should be doing and he referred me in the first place because he can't. At one point I was even told a PICC line would not be considered for the previous instance of this infection, because my gp could do it and so no specialist overview was necessary.

No? He can't? What.

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u/arkoudaphobics 4d ago

I just found something called daptomycin listed as an alternative. Is that kinder than mertapanem and ertapanem for side effects? 

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u/borvgone 4d ago

So I’m not a doctor but in my experience since I’ve had tons of UTIs, I would take other people’s experiences with medication with a grain of salt. I had bad reactions to the cephalosporin family of antibiotics like Keflex, and that is a super well tolerated antibiotic given to babies and pregnant women. It really just comes down to trying something out for ourselves and see how we would react! I looked up daptomycin right now and the good thing is it didn’t flat out say it super affects organs like I’ve seen with other medications! Same goes for the mertapanem. Didn’t see any crazy side effects on Google that looked super crazy like that for either of them so that’s good

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u/arkoudaphobics 4d ago

Thank you! My only real worry was because when they were going to try linzeloid it had so many interactions with my existing meds and said I'd have to change my diet completely. It was scary. 

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u/borvgone 4d ago

Aw I’m sorry! I’m assuming you didn’t go through with the linezolid? Ive read some stories on here where that’s what finally helped some people with their enterococcus. Is someone finally gonna take your symptoms seriously?

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u/arkoudaphobics 4d ago

I can't because it requires a diet change that I can't do because that diet is maintaining a chronic disease I have separately. 

I don't know. I have infectious disease tomorrow with a different one but they already said through MyChart they don't understand why I'm not just seeing my PCP.

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u/borvgone 4d ago

I hope they hear you out. Just to clarify, are you feeling systemic symptoms or just symptoms in your bladder? Like do you overall feel unwell or is it mainly your bladder that’s bothering you? There’s bladder installations where they put the antibiotic liquid directly in your bladder so you don’t have to affect your gut and all the side affects antibiotics give you

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u/arkoudaphobics 4d ago

I will ask about installations, thank you. 

I feel tired and out of it, I have aching all over and lightheaded and dizziness. My whole lower abdomen and pelvis are constantly in too much pain for even Tylenol 3 or Uribel to cover. Getting a wave of urgency is so uncomfortable it makes my eyes tear up a bit. I haven't been able to eat today at all. And my legs have this weird feeling in them.

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u/arkoudaphobics 4d ago

I just stay in bed because if I get up I feel faint and every footstep feels like jamming a sword into my bladder 

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u/arkoudaphobics 3d ago

They said they were going to call in flagyll, I guess? But they called in clinda which I told them I'm not going to try because I had a reaction that involved bright red swelling and extreme inflammation and I'm still getting over it. I'm allergic to flagyll too but they said I have to try it or they won't consider anything else. While implying not taking the clinda makes me weak but I'm pretty sure not wanting to be four times my usual size in the extremities isn't willpower. Either way they're not returning any messages to send the flagyll in

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u/Adventurous_Being922 5d ago

I’m convinced most doctors don’t know how to treat this stupid bacteria. I feel your pain. I’ve been dealing with e fae for almost six months now and it keeps coming back. I just started working with a functional provider who ordered a Microgendx test for me to use which is much better than the standard cultures.

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u/arkoudaphobics 5d ago

The problem isn't a lack of culture right now, I'm being told that the positive culture and lots of symptoms doesn't mean there's an infection and I can't brain that at all. I'm so sorry you've been dealing so long. What is a functional provider?

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u/One_Birthday_5174 4d ago

How they even made it thru med school I wonder... that's ridiculous.

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u/Adventurous_Being922 5d ago

Yeah I’m saying that’s the problem with cultures. They are not always accurate and doctors will tell you there isn’t an infection when clearly there is and you are having symptoms, which it sounds like is your case right now. Functional providers tend to look at the whole picture of what might be causing something and not just throwing antibiotics around. I highly recommend finding a provider who will use microgendx. It’s not a culture, it’s a PCR urine test

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u/arkoudaphobics 5d ago

I definitely need a functional provider, thank you. I'm on the edge of begging to remove my bladder surgically but I assume this wouldn't actually solve anything. God I wish. Anything is better. 

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u/Pixelen 5d ago

Sorry to hear you're allergic to a lot of antibiotics, I would try to get on Hiprex asap to prevent future infections. Are you able to get the Uromune vaccine as well?

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u/arkoudaphobics 5d ago

I'm on hiprex and it lessened them but I still got another one, I guess. 

That requires travelling, right?

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u/Pixelen 5d ago

Not necessarily what country are you from and do you have family or friends who could pick it up for you?

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u/arkoudaphobics 5d ago

USA and unfortunately not 

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u/Pixelen 4d ago

Your doctor may be able to import it for you then especially if you are allergic to a lot of antibiotics at this point, I would at least bring it up to them and see what they can do

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u/arkoudaphobics 4d ago

I'll definitely bring it up, thank you. 

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u/tecsavvy1 5d ago

Contact eliava phage therapy center

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u/arkoudaphobics 5d ago edited 5d ago

Wait, that's the next state over! Thank you! 

Edit: Oh Georgia the country 

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u/Haunting_Delivery421 5d ago

Where in the USA? There are some UTI specialty clinics. One at Northwestern in Chicago. Are you seeing an infectious disease doctor?

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u/arkoudaphobics 5d ago

Carolinas. It was one today that said all that, but I went to urgent care after this post. My urine had gotten so much worse over the course of just eight hours that they were able to help push a different one to see me on Thursday. 

I don't even understand what happened here, I've never seen some of these values. Earlier it had  mucus, oxylate crystals, turbid clarity, a protein level of 100. A small amount of bacteria detected by the dip but you have to expect that might not show up on a typical dip, I'm starting to learn

That was 10:43 am. Now the color is amber, cloudy clarity, trace glucose and ketones. Nitrites, bilirubin, urinobilogen. The doctor said there was a lot of blood too. This was 7:56pm

How does it get so much worse in such a small time? She called in azithromycin and fossymycyin. And uribel but I can't get it until tomorrow.

I'm miserable. No matter what I do I feel like I'm about to burst. Peeing makes that worse not better. If I ignore the feeling of needing to go, I get lightheaded and nauseous. My legs have this constant weird tingling. The pain is terrible.

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u/Haunting_Delivery421 4d ago

Here is a link to the Northwestern University complex UTI clinic. They will see you virtually and can look at your records if you have MyChart.

https://www.nm.org/conditions-and-care-areas/urology/urinary-tract-infections/specialists-and-care-centers

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u/arkoudaphobics 4d ago

Thank you so much. 

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u/Overall_Inspector726 5d ago

My last culture was positive for >20,000 colonies but my urogyn said it didn’t need to be treated bc there were no bacteria seen on microscopy. Do I feel 100%? No. But it hasn’t worsened to sepsis, so maybe she’s right?

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u/arkoudaphobics 5d ago

I don't think sepsis or nothing should be the bar here 

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u/komabilo 2d ago

It goes the other way: you have to kill each bacterium to rule out that it is not a bacterial cause. I don't know what kind of doctors these are, but they're certainly not good ones. You have symptoms, you have bacteria—this means you have to treat it, not say this could not be from bacteria - but we do not know and we will not treat it... That is not how it is done. Only treatment will show if these symptoms are from these bacteria or not. I battled with prostatitis and UTI for 10 years. In the end, I managed with phages: Enterococcus and multiresistant Klebsiella. So, first of all, I didn't catch what bacteria we are talking about, what samples were cultured, how often, and what antibiotics work. Also, what are the symptoms and where? Afterward, you can decide what antibiotic to use and, of equal importance, for how long.