Embedded/Recurrent UTI

[applecharlotte12]

Hi, I'm hoping someone can help me...

Embedded uti since last November triggered by a kidney infection, had ultra sound and cystoscopy all clear. Tried hiprex, didn't work. I take Cranberry tablets daily although the urologist said not to bother.

On a low daily dose of antibiotics (did 3 months trimethoprim now on cefalexin) but still have mild symptoms that flare into a full infection 2 x month. It's only when I take a full dose of antibiotics that I start to feel okay, but when I drop down to low dose, symptoms come back immediately.

I work full time and am hanging on by a thread - the daily maintenance and headspace is horrendous. Plus it's affected my relationship.

I don't drink anything but weak decaf tea, water and cranberry. Gave up booze (2 years ago), fizzy drinks, caffeine, sex, tomatoes, citrus fruits.

Has anyone come out the other side of this? What worked? How long did it last? I originally saw a private urologist but am now waiting to be transferred into the NHS. Any advice, guidance or shared experience would be welcome 🙏

Sorry, very behind on this thread. Will read through later. Welcome and commiserations to the newer posters.

@Fornthank you for checking in. 9 months review... all my counts have gone up. Higher than when I first went there!! But my symptoms have steadily improved even since my last review. Still get mild flares with exercise and if I push it too much with coffee/fizzy drinks. Most triggers have gone tho. So I'm still on antibiotics until mid June! Which will be a year. HS said it just indicated there is still bacteria being released as my bladder lining sheds as I wouldn't have sensitivity to triggers if there wasn't. Interestingly, he said the exercise leads to flares as movement encourages the bladder lining to shed more quickly (and release more embedded bacteria) so that's quite common.

anyway, disappointed to be still taking antibiotics but need to just remember how much better I feel overall and be patient. How are you? How are you feeling? Any improvement yet?

Are you getting some sleep at least now? This is awful that your flares are so bad!

@applecharlotte12 thats interesting re counts but feeling better. That’s the main thing , my appointment is on the 17th march so it’ll be interesting how my counts are. I’m definitely improving, my sleep is better, but I still feel I have a long time to go but who knows, I’m still off the hipRex, I can’t face taking that as it’s didn’t agree with me.
so basically it’s food to do sport so to release the bacteria quicker, interesting. I haven’t swam for a year after 3/5 times a week for 15 years, HS said I should go as it didn’t give me the uti but I’m too knackered, I just try and go for a decent walk most days , good luck with the next three months! .

Im on vagifem. Uti still lingering. Macrodantin now. Its so tiring.

Returning to this thread a year after I started it and a year into treatment at Artemis Cystitis clinic. How are you all doing?

After reducing down to 1g of cephalexin a day at the start of the year and having many less symptoms, I had the mother of all flare ups in March that lasted 5 weeks (I guess that explained the raised counts in my review at the end of Feb)!! I had reduced my full dose antibiotic too soon so upped again to 1.5g and since the and have been symptom free for the last 6 weeks. I can drink coffee, fizzy drinks and have started running again.

My counts were 4 wbc and 4 epi cells at my review last week so need to stay on the same dose before tapering off slowly if they keep going down...

it's a bloody long process dealing with a chronic uti, but I'm slowly getting rid of the infection. Over the full year of being on full dose antibiotics, Hiprex and vit c I have probably been symptom free for 6 months, with flare ups every couple of months but I do feel so much better.

it's taking so much longer than I expected and the psychological toll has been immense.

hoping others on the thread have had respite and are feeling better.

hi @applecharlotte12
im still in full dose antibiotics but when I do have symptoms they’re much milder but Dr Malone Lee says it could be the thrush which I have now, of course!
how are you ?

If it is E.Coli. D Mannose is effective, serviced from Cranberry stops the bacteria sticking to the bladder wall

Hi, glad your flares are milder!! I'm also on full dose, my wbc were at zero in Oct and I'd been symptom free for a couple of months. Was hoping to taper off if feeling the same in January... but had a mild flare in the last couple of days 😢 it's so relentless isn't it? Just can't imagine ever coming off these antibiotics... it's been 2 years since my original infection. Sending well wishes to you.

Also struggling with thrush the last couple of months... have you used the oral tablet for that? They seem to be the only thing that properly clears it for me (for a couple of weeks!).

Has anyone mentioned d-mannose? (sorry not read the whole thread)
I and several others I know have found this a miracle cure

I had recurrent UTIs as did my Mum. Both of us on prophylactic ABs but still came back from time to time. I tried d-mannose at the suggestion of a Urologist and it was like magic wand, so my mum tried too, neither of us have had an infection since (several years) other than when my Mum for some reason decided not to take them!

I have recommended to about 8 friends who have all had similar results

it works by stopping the e-coli attaching to your urinary tract

D-Mannose for UTI: Dosage, Treatment, Side Effects, and More

You can buy on Amazon cheaply or in any health food type place

Hi, sorry to hear you and your mum have suffered but delighted you've found DMannose works - amazing.

I did find it helpful along with cranberry tablets as a daily prevention when suffering with recurrent infections but unfortunately an infection I had 2 years ago became chronic which means the bacteria is in the lining of the bladder and these kinds of supplements don't help. The infection is buried so deep only long term high dose antibiotics will clear it.

Thank you for taking the time to share tho and glad you and people you know have managed to avoid more infections.

@Joyforsomenotall im afraid I tried all that two years ago but once it’s embedded you need antibiotics

Hi @applecharlotte12
urghh me too, I’ve just come off 14 days or oral tablet for thrush but can feel it coming on, I’m on borac acid once a week for thrush, I know put Vaseline around the vulva as it does sting in the morning and then slush with water… and so it goes in, I thought I’d got away with not having thrush. I did take probiotics but they made me feel sick

I’m also pleased yours flares are milder but like you I can’t imagine coming off antibiotics. I still get up a lot in the night as well xx

@applecharlotte12 are you in hiprex, I couldn’t cope with that as it gave me horrid burning

Ooh not tried Vaseline, maybe I should - thanks.

Yes also on Boric acid (although not always been consistent , same with probiotics) and Hiprex. I started Hiprex the same time as the antibiotics so it's hard to know how much it's helped. My instinct tells me it's the antibiotics that do the heavy lifting.

Argh... feel shit for you... me... all sufferers. Had a rare night out planned to see old friends for a gig tonight - had to cancel. V frustrating.

@applecharlotte12
ah sorry you missed out on your evening, it’s all really exhausting.
when you have a flare what are your symptoms? I just always need the loo a lot and have agitation in my bladder. I just never realised we’d be on antibiotics for so long

Yes I just get a day or so of frequency and urgency (not as bad as a full uti) then a day of feeling really exhausted. As long as I increase to flare dose quickly it tends to improve quickly (in 12 hours). I really can't imagine being totally off antibiotics!! Terrifying isn't it?!

I’m on full whack of antibiotics so haven’t got a flare dose now but it’s definitely improving , hoping this flare for you is won’t last

That's good. I'm just hoping with time we both kill the infection totally. What's your dosage? Are you on cephalexin or a different antibiotic?

Hi @applecharlotte12
I’m on cefalexin 8 x500g a day , the first antibiotic wasn’t working so changed three months in. Are you on cefalexin as well.

im really going to try oral probiotics again to try and help the thrush, I think vaginally everything is a bit raw with the thrush.

Ah I see. Yes on Cefalexin, it does seem to have been effective. I recently bought some optimac probiotics on Holland and Barrett's 3 for 2. People on the Facebook group were saying they were the best, what brand do you take? So annoying that we have to struggle with thrush on top of this shitty illness!

@applecharlotte12
inwas using optibac for antibiotics and bio kult for vaginal but did stop as it was all making me feel sick but I’m going to try again, I forgot to take them for a while and felt better hence stopping, I was thinking this morning I’m fed up with never feeling well, if I don’t have a flare I’m then dealing with thrush etc! Also it’s Bleeden expensive going to Artemis, I just can’t stop thinking if the nhs had given us two weeks or more antibiotics we wouldn’t be in this situation x