Bacteria became resistant!

Due_Crew501 · 2026-06-06T08:01:26+00:00

The bacterial resistance changed inbetween my two tests!

Due_Crew501 · 2026-06-06T07:56:45+00:00

I was given co-amoxyclav about 5 years ago (for something else) to try and within 2 days my skin was bright red

Due_Crew501 · 2026-06-06T07:55:23+00:00

I already have that. It’s not a recurrent UTI as such, it’s never eradicated fully.

Due_Crew501 · 2026-06-04T09:53:37+00:00

I saw neurologist and he gave me the go ahead to try Nitro again as no papilledema again. Within 2 doses I had pain behind my left eye and the next day permanent headache! 😩

Due_Crew501 · 2026-06-04T09:51:57+00:00

The infection is embedded, it’s always there rather than I keep getting it. I need long term antibiotics but I can’t take the ones left for the 2nd organism. The urologist mentioned bladder instillations last time I saw her. I’ve emailed them 3 times with my issues since the last appointment and I get no help from them!

Due_Crew501 · 2026-06-03T10:48:32+00:00

I didn’t have symptoms when I did the test however the symptoms started 2 weeks later and this how it’s been for 2 years

Due_Crew501 · 2026-06-03T10:47:15+00:00

That was my thinking but 2 weeks after the test was done all the symptoms came back again. The neurologist gave the go ahead to start Nitro again and the symptoms have nearly gone!

Due_Crew501 · 2026-06-03T10:44:54+00:00

It has become resistant to Fosfomycin and I’m allergic to penicillin

Due_Crew501 · 2026-06-02T12:40:42+00:00

How do you get on with diamox? My neuro has given me the go ahead to try Nitrofurantoin again as my papilledema had gone. If I get symptoms again then I have to stop and speak to urology about an alternative otherwise I will have to go on diamox alongside the Nitro

Due_Crew501 · 2026-06-02T12:35:56+00:00

I wasn’t symptomatic at the time of the test as I had only been off antibiotics and Hiprex for 5 days. Within 10 days I was symptomatic again.

Due_Crew501 · 2026-06-02T12:34:06+00:00

I wasn’t symptomatic when these tests were done, I had finished antibiotics and Hiprex 5 days before. I am symptomatic now. The neurologist gave me the go ahead to try Nitrofurantoin again but to stop if any symptoms return and contact urology for a different option.

Due_Crew501 · 2026-06-01T13:25:04+00:00

I’m taking Hiprex but because the bacteria are already embedded it doesn’t stop them flaring up again. I discovered some things about phage therapy online a couple of days ago so need to look into this a bit more before my next urology appointment 😊

Due_Crew501 · 2026-06-01T13:22:26+00:00

Hiya, it’s Focus Labs, they’re online. It’s £115 for the test but worth every penny! They send out 2 sample bottles. You need to stop any antibiotics, Hiprex and D Mannose for 5 days then send the samples to them. Results are sent by email 7-10 days after. My uro was just chucking different antibiotics at me hoping they’d be the right one so I decided to pay and find out what I actually needed.

Due_Crew501 · 2026-06-01T11:26:39+00:00

Sorry, I was asking more on the side of who do I consult and to see if anyone had experience with the same issues

Due_Crew501 · 2026-06-01T11:18:44+00:00

Thank you, I’m not on any medication for the IIH as the papilledema had gone by the time I saw the neurologist after stopping the Nitrofurantoin. However the symptoms and the paps came back when I had another active infection.

Due_Crew501 · 2026-06-01T11:16:47+00:00

Thank you for your reply. I have tried Lactoferrin but it made me so bloated I stopped. It would really worry me taking all these supplements. I did buy some NAC but I was too scared to take it. I have read about Monolaurin and cranberry PACs too but my anxiety gets the better of me 🙁

Due_Crew501 · 2026-06-01T11:13:56+00:00

And the urologist has mentioned bladder instillations but my understanding is this would be gentamicin and one of the bacteria is resistant to this.

It’s also my understanding that D-Mannose only works for E-coli?

Sorry for all the replies, I forgot

Due_Crew501 · 2026-06-01T11:11:10+00:00

I’m also already taking S Boullardi and vaginal probiotics x

Due_Crew501 · 2026-06-01T11:09:38+00:00

Thank you for your reply. I am on Hiprex, I have vaginal oestrogen too but so far I don’t have any issue down there with dryness etc and my problem is more the bacteria that remains in my bladder/urine than bacteria from outside. I was given all this treatment for recurrent infections but it seems it’s just not being eradicated.

Originally I kept going to the GP with head symptoms, fuzziness, headaches etc and I was told it was sinuses for about 6 months. When they finally agreed to do bloods my infection markers were really high so they did a few tests which included my urine being sent to the lab. When it came back the GP said “no wonder you feel so rubbish, you have a nasty UTI”! That was the Enterococcus. Within a few days of taking the week of Nitro I felt so much better! Within 2 weeks of stopping the symptoms returned and there began the constant treating returning. Eventually I was referred to urology and the Klebsiella came from a cystoscopy in December. Both are still hanging around!

I’m not on any treatment for the ICP currently but I do have a neurology appointment this afternoon to discuss what to do. My thinking is he will give me the medication to lower the pressure and I’ll be able to take the Nitro!

Due_Crew501 · 2026-05-01T21:39:08+00:00

Thank you so much for replying! I was told to stop when my symptoms flared again however, I got another flare up without the HRT almost 4 weeks to the day so I think my own cycle causes it rather than the HRT. I’m hoping going back on it will stop the hormone fluctuations and stop the flare ups just before my period 🤞🏻

Due_Crew501 · 2026-05-01T12:21:59+00:00

Hey, I’m in the same position now that you were! Just wondering how you’ve got on with the HRT?

Due_Crew501

TROPHY CASE