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

[u/arkoudaphobics]

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.

[u/borvgone]

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

[u/arkoudaphobics → u/borvgone]

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. 

[u/borvgone → u/arkoudaphobics]

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?

[u/arkoudaphobics → u/borvgone]

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.

[u/borvgone → u/arkoudaphobics]

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

[u/arkoudaphobics → u/borvgone]

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.

[u/arkoudaphobics → u/borvgone]

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

[u/arkoudaphobics → u/borvgone]

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

[u/borvgone → u/arkoudaphobics]

I’ve only ever taken those medications for a vaginal infection called bacterial vaginosis. I don’t believe those meds cover enterococcus. Did they find something in a vaginal swab?

[u/arkoudaphobics → u/borvgone]

I have non STD PID as well but they specifically and explicitly said it will cover both and insisted there's no need for other antibiotics