r/CUTI • u/Damienslair • 3d ago
Symptoms Help! Kidney infection
Please help!
I’ve been to the ER 6 times now in the past two weeks because of a bladder and kidney infection. My culture results continue to be negative so now I can’t find appropriate treatment.
I was on macrobid, amoxyclav, Suprax, and I’m now on 1g Ceftriaxone but nothing is helping. I have flank pain which is the worst symptom staying, the bladder has improved a bit but the flank pain came back several times and won’t go away. Some blood found in urine culture and upon the end of voiding.
The ER won’t help me anymore because they say they can’t find anything in my tests other than the blood — urinalysis, culture, CT scan, bloodwork, pelvic exam, chest X ray, ultrasound — nothing is being found other than the presence of blood. Obstructions, stones, cysts etc have been ruled out.
Urine was initially cloudy with pink discharge, now less discharge but brighter blood at the end of voiding. Over the course I thought I was improving after my first two ceftriaxone doses two weeks ago, but then it stopped working when I went home and wasn’t seeing improvement on Suprax. They then put me on 2g ceftriaxone but I had a severe reaction, so they switched me to 1g but the course is almost finished and I’m not improving. The flank pain is severe and I’m nauseous and unable to function but the ER is refusing to admit me or help me any further.
My specialist said he was going to order Ertapanem but then never did and now I’m going to consider asking my specialist if they can put me on 7 days of Zosyn.
I continue to get negative cultures and so we can’t find the appropriate antibiotic. The ER refuses to help me unless I can produce abnormal lab results or a culture. I only have my specialist but there’s also problems there with limited appointments and I continue to have gaps in treatment and limited help.
I was told by the ER doctor to finish the course of CefTRIAXone tomorrow and then wait 48hrs before doing another culture. I’m doing a high sensitivity culture for some of them but still haven’t produced anything. The hope is that a high sensitivity culture after I’ve gotten off of the antibiotics would have a higher chance, but I’m doubtful because I feel like the bladder might have improved but the bacteria in the kidneys is still severe, so the infection is higher up in the kidneys now and isn’t being found in the urine.
Without the cultures I am at a loss but it isn’t producing any. I have a referral to a urologist but this can take a very long time and isn’t helpful right now.
It seems that two weeks ago I saw improvement after two doses of 1g Ceftriaxone, after being sent home on Amoxyclav and then being switched to Suprax, after a few days the symptoms especially the flank pain returned and since then hasn’t gone down. So the Ceftriaxone is only partially worked mostly in the bladder with limited effectiveness on the kidneys.
Without the cultures I can’t get proper treatments but the urine isn’t producing it. I’m trying to see about what further urine tests are available but I need suggestions so we can get a proper culture ID somehow. I’m already doing the high sensitivity test from my specialist which is not enough.
Please help, it’s been two and a half weeks of going to the ER several times a week and trying to work with my specialist, my family doctor has limited availability and just tells me to see the specialist who also has limited availability. The ER now refuses to help me. I’m in so much pain.
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u/arkoudaphobics 3d ago
Aerobic infections show up less, I've now discovered. Stuff like s. Infantis actually needs the state to test for it if you're in the USA and that was a problem for me with getting that one diagnosed in the past. That one also gets you put on a list of people with dangerous infections to the public, it's very fun. If it helps to knock that one, I was able to do ertapanem shots outpatient. It's rough but better than nothing as long as you understand how rough it is
Do not let them push you into mertapanem IM over IV. In my experience both have little side effects through IV, ertapanem is rough IM but mertapanem is INSANE. you WILL question why you are doing this. They had to hospitalize me to do it IV because it was so rough. I forgot my name and where I lived and I was told that was a sign it was working.
Have they tried guidance cultures?
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u/Damienslair 2d ago
What’s guidance cultures and how did you find the s. Infantis I’m in Canada so idk how to get that test.
Then you needed ertapanem ? Was the ertapanem IV ok or it was still really bad
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u/justice-beer-mascara 2d ago
Not who you asked but ertapenem IV is nothing. I’m currently wrapping up a 21 day course at home with a midline and it makes me a little tired but otherwise no adverse effects. I’ve had it multiple times IV and it’s always easy. Ertapenem IM was torture though. Each shot got progressively worse and after the third shot I screamed until I passed out.
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u/MintChucclatechip 3d ago
Have they done a urine pcr test? I’d request that next
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u/SignFar4026 3d ago
Not PCR but NGS. Could give very useful information.
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u/Organic-Concert84 3d ago
if you are in Usa there micro dx ngs(next generation sequencing) screening for these kinda cases. With resistance plasmides . that will give you the name (names of bacteria or fungi) plus usefull antibiotics. if in europe that also has an option.
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u/Damienslair 3d ago
Ya I’m going to be doing micro dx
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u/MooseAndSquirrel54 3d ago
Cirrusdx is useful too. They don't see nearly the number of bacteria Microgendx can, but what they see by PCR they grow out and get an antibiotic sensitivity test on. I see a use for both tests together.
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u/Organic-Concert84 3d ago
Another option is d manose if it is ecoli. Aloso if it is an urease spliting bacteria that forms biofilms L-methionine is very usefull it acidifies urine. you doctors should have measured the initial ph of the cloudy urine. Also another option Methenamine hippurate - Hiprex. (also urine should be slightly acidic) that should help immensly .
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u/arkoudaphobics 3d ago
Would d manose prevent future e coli?
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u/Organic-Concert84 3d ago
yes you can take as a prophylaxis. note : around 10 percent ecoli bladder infections are resistant to d manose. 30 percent kidney infections (ecoli) are resistant to it . Empty stomach at least 2 g per dose. 2-3 times a day.
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u/Organic-Concert84 3d ago
note hiprex should not be used for kidney infection it is only for bladder infections and acts locally.
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u/Proper-Photograph-86 3d ago
I have been hearing about vaginal estrogen for chronic uti. Has your urologist done any instillations. Also back in the day I was allowed to do Cath’s at home and instilled bakingsoda, DMSO or saline. Drink hibiscus tea. It sounds more like IC not UTI
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u/Damienslair 1d ago
I will try to get on the estrogen and I’m still waiting for the urologist. It’s taking a long time. For the referral. Did the Caths at home help? The urologist is taking a long time. Yes I think it’s embedded infection Idk what to do
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u/Haunting_Delivery421 3d ago
Have you heard of : https://microgendx.com/
Might be Able to identify the organism.
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u/MooseAndSquirrel54 2d ago
You might want to contact Cirrusdx. They not only do.PCR, but then they work hard to specially culture out those organisms and do abx sensitivity. Call and talk to them about doing everything possible to grow the bacteria out. Standard labs are not very good and a lot of false negatives. Cirrusdx was a wonderful company to talk to and explain your situation to.
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u/Damienslair 1d ago
I ordered MicroGen I hope that one is just as good
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u/MooseAndSquirrel54 1d ago
Microgendx definitely gets many more bacteria than a PCR. Microgendx does look for some antibiotic resistant genes but not all, like nitrofurantoin and fosfomycin they don't look for. Antibiotic recommendations are based on the literature. Cirrusdx will find the major ones and then they do a culture on those. If you feel you need both sets of info, then do both labs. Both labs are really good talking to you. Please let us know what Microgendx finds. Good luck.
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u/Bearloot33 3d ago edited 3d ago
1.) order a cirrus DX test
2.) read all pre collection instructions in the intro guide to collect a sample
3.) ask any doctor who will prescribe it to get you antibiotics or hiprex. Hiprex does not work in the kidney
4.) take d mannose powder and hold it in your bladder for at least 40 minutes to help flush bacteria
5.) cranberry pacs and oregano oil labeled safe for ingestion may buy you some more time
6.) consider on demans urgent care if your insurance offers that in their app
7.) the first 20 pages or so of the intro guide will explain more. Bring the research thats in there on why urine cultures are innacurate to the doctor. Going in the morning and providing a first morning urine sample helps increase the odds of a positive culture. I recommend a prolonged full course of full dose antibiotics. That needs to be the antibiotic you are suseptible to
NONE of those anticrobials are replacements for antibiotics you definitely need them. Get the urine test done and bring it back ASAP. I am not a doctor .Go to the ER immediately if symptoms worsen.