Hi, so I have been on antibiotics for 5 months. Several types, several strength and now on a retainer!!
I have had a urine infection for the duration of this time, when sent to lab it never grows anything but always shows blood with dip test. Scans are clear all blood test apart from crp are clear but no one can see where the problem is, it's driving me mad 😡
Can anyone help?
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Jem99
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I had these symptoms for a number of months and yet no infection ever showed in tests. I concluded that an irritable bladder was a nasty side effect of Prednisalone. This symptom subsided once I got below 10 mgs. I am afraid I just put up with it, drinking plenty of fluids and trying to avoid acidic food and drink. Sugar seemed also to make things worse. Sorry, I never found a solution to pass on to you.
I added d mannose to my vitamin regimen and it has helped a great deal with uti's. Im on methotrexate, folic acid, hydroxychloroquine and humira for inflammatory arthritis and one of those medications definitely leads to a uti tendency.
Well for a start it probably isn't a urinary tract INFECTION. Just because there is blood in the urine doesn't mean it is an infection - and that is probably why they can't culture anything.
After this length of time you need a referral to urology so they can do a cystoscopy to try and try to identify WHY you have these symptoms.
I really am appalled at the cavalier attitude of some GPs to antibiotic use - obviously slept though their bacteriology lectures. And deaf to international pleas to reduce their use.
I have had exactly the same problems. Diagnosed with GCA a year ago, put on high Prednisolone dose within a few weeks developed urinary problems. Constantly had blood in urine, felt like infection but when sample sent to lab it showed nothing, this went on for four months. Referred to urologist, did a cystoscopy, all clear, ultrasound on bladder, all clear. The urologist thought it was inflammation of the bladder due to steroids and when I got lower it would clear up. Am now on 13mg having started on 60 and, at last, things are improving.
I also suffered from these symptoms for several months despite several helpings of antibiotics and was thoroughly depressed. I was sent to see a consultant who could find nothing wrong with me but sent me for a cystoscopy which came back clear.
Then I read a book, 'Understanding Cystitis' by Angela Kilmartin. I am going back a few years but have just looked online and I'm sure that's the one.
One of the causes of ongoing cystitis symptoms after antibiotic treatment was actually candida (thrush) caused by the antibiotics. This certainly proved to be the case for me. I cut out all sugar, alcohol, mushrooms etc. (SheffieldJane mentioned that sugar made the symptoms worse) and things improved fairly quickly although it took quite a while to get back to normal.
Now, of course, you can buy the one stop treatment pill from the chemist which helps more quickly. I had to do this recently after taking antibiotics for something quite different and, without thinking, went on to have my weekend glasses of wine. Then I ended up with the awful cystitis symptoms but I knew what it was and went to the chemist who said he couldn't understand why doctors didn't warn patients about the after effects of taking antibiotics.
Candida may not be the cause of your symptoms but perhaps it could be considered. Reading that book changed my life so much at that time when I was feeling so low.
OK, here goes.....................the best people to see are those who deal with STD's...........now I know this can be where you all throw up your hands and say...............****** ****, but believe me what they don't know is about the size of a pinhead.
When I worked, with 400 women and in the 50's a close friend was diagnosed with Type 1 diabetes at 21. Yes, UTI was major problem. An elderly lady who lived next door came in one day when I was visiting and said 'don't shout at me when I tell you what I am going to say' so we agreed we would listen and keep our mouths shut. Now remember this was the 50's and people did not talk about sex etc. That lady said, you go to Ward 35 and see them............she explained about 'Ward 35' and we were quite upset.................however after another two bad bouts, we went together. Within two weeks - sorted and she never had another problem until she was pregnant about 3 years later. So off to GP.............forget it anti-biotics did not work, so we bit the bullet and off to Ward 35. Once again quickly and successfully dealt with and the baby is now a fully grown man with kids of his own.
So if Urology is not the answer................bite the bullet.
Has someone not read your notes? If your ESR and/or CRP are raised at present that doesn't necessarily mean an infection - PMR and GCA raise them too.
Though it now occurs to me - DO you have PMR? If not - do you realise this forum is for people with either polymyalgia rheumatica or giant cell arteritis.
It is so nice that we can all let off steam on this site - it's not something we can talk about generally but we have to suffer in silence just wishing it would all go away ad we could be better! I certainly found the Mannose cures the infections but discomfort sometimes continues and seems to be related to types of acidic foods, alcohol and fruits and spices etc. Oh for the days when eating was a pleasure instead of like an invalid diet! The good news is that we will eventually come off steroids and maybe be sort of normal again
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