Chronic UTI/ biofilm

[Chrisinthemorning]

Anyone had treatment for chronic UTI/ biofilm?
My history is that I have always been very prone to cystitis. I went to urology in my late teens and had urodynamics and a 6 month course of trimethoprim. After this I was ok for many years with just the odd bout treated with antibiotics.
Turning 40 my gp brought me in for a routine health screening- my urine had microscopic haematuria. Repeated- same. They said I probably had an occult asymptomatic UTI- Nitrofurantoin for a week. Since then I have had 2 symptomatic very painful UTIs so trimethoprim for a week and then Nitrofurantoin again for a week. Still have the haematuria and low grade symptoms- discomfort and frequency so now been referred privately. I am in Yorkshire so have chosen to see Mr Ased Ali who does broth culture and long term antibiotics if appropriate. Appt mid April.
At the moment I am taking d mannose and drinking lots of water. Reduced caffeine to just first thing and not drinking alcohol 😢.
Any experiences?
Thank you

DS (17) has microscopic haematuria and GP said this can be normal in 1 in 10 people (apparently his DD also has it).
It sounds a bit weird, but full fat milk calmed symptoms for me. (Used to suffer with painful bladder, particularly when dehydrated, although no uti present. Thankfully resolved now-but still drink full fat milk)!
Hope things get sorted for you.

This broth culture debate has been going on for years and years. It's really not clear if there is something in it ( scuse pun.) There are debates online on it.

I knew of women sending off samples by Fedex to the US to try and get some results and treatment, 10 years ago.

Some people just do have microscopic blood in their urine- can be from a sore urethra especially nr menopause though you sound too young for that. But an inflamed bladder can take ages to heal fully. You ought to stop caffeine completely. I know it's hard!

Have you seen the 'IC' diet? Find online and follow- might work.

Do you mind me interrupting and asking what is broth culture?

It’s where they culture your urine for much longer and in a different medium rather than on an agar plate.
The ursine samples the GPs send off for culture are pretty much useless and miss a lot of infections.

Thank you. Ah this must be why my private consultant always confirms that I do have a chronic infection, whereas my GP keeps telling me the simple is clear when I’m symptomatic and unwell.

Have they suggested hipprex for you?

I haven’t been seen yet- mid April. Just researching.
Who is your consultant?

Can I PM you?

Yes please

I've had some peri-menopause bladder symptoms and had done some reading into biofilms after what seemed like a persistent uti. I took lactoferrin and monolaurin, both good at breaking down biofilms caused by various bacteria (I'd read some research rather than anecdotal evidence) and it really seemed to help. That said I'm still getting urethral symptoms and microscopic blood but the urologist has basically told me I have an 'old' urethra 🤨 and I'm waiting on a cystoscopy. It might be worth researching though - the supplements weren't cheap but I was desperate! X

Ellen can you tell me what doses of monolaurin and lactoferrin you took? I have had IC for years and would like to try them.

Hi @RegionalTreasure , sorry to hear that.
I took 1 scoop of Lauricidin monolaurin pellets per day (you can take more) and 250mg Jarrow Formula lactoferrin (1 capsule) per day.
I also take MSM which I've seen recommended in relation to IC. So far Amazon seems to be cheapest for Lauricidin which seems to be the best brand/form of monolaurin x

That's brilliant Ellen, thank you, I'm going to order them right now. Fingers crossed and best of luck for your cystoscopy.

You're very welcome @RegionalTreasure! I hope you get some relief, let me know how you get on. Start slowly with Lauricidin, it gave me awful wind if I took too much or at the same time as MSM! And Thankyou, I'm looking forward to medical science confirming that my wee urethra has caught the menopause x

Hi SunnySkies, I know this is an old post but would you mind also PM me the name of your. consultant? I've been referred by GP and I have private insurance so need to find a very good consultant to help me with my recurrent UTIs. Many thanks for your help.

Professor Malone Lee is very good, he now only works privately in Harley Street. I used to see him when he was nhs.

The other alternative is the LUTS clinic at the Whittington hospital, nhs clinic which accepts referrals from all over the U.K. they run treatment based on Profs regime as he set the clinic up.