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Chronic low level UTI - no bacteria present

Posted , 5 users are following.

claire16235
claire16235

I wanted to write my story purely in the hope it might help someone who is suffering and looking for answers. 

I’ve suffered with recurrent UTIs for years but particularly after having children. I kept having infection after infection and my crappy doctor kept prescribing week- long courses of antibiotics and it wasn’t kicking it. It affected me so much to think I was finally better only for it to return with a vengeance.  I changed doctors and after 2 longer courses of stronger antibiotics I managed to kick it . But each time I had been to the doctor, dreadfully unwell, all the symptoms of UTI, lower back pain, flu like, fever, palpitations-  still no bacteria showed in my urine even when it was sent for tests. You end up feeling like this over emotional, mad woman and it made me super anxious incase they refused me antibiotics. I even at times stock piled antibiotics so I would have them when it struck and not have to keep going to the dr with my ‘non existent’ condition. Eventually I  was referred to a urologist who did a cystoscopy (which was horrible + I wouldn’t recommend unless you have to.) He saw no inflammation that would indicate Interstitial Cystitis (but also worth noting I wasn’t having any infection or flares at the time- I also suffer with some bladder flares/ irritation from time to time) but he said my bladder was lying low post childbirth which makes you more susceptible to infections and that he believed I was having a low level, chronic infection and that’s why bacteria wasn’t showing. Recommended 3 month low dose antibiotic next time it reoccurs after the initial course of antibiotics. 

As I mentioned I do also get some kind of  bladder flares and irritation which I would take a prescribed antihistamine at night and also the pill called Azo which I get off amazon, gets rid of symptoms so you can sleep. The antihistamine also helps you to sleep also and got  rid of the irritation for me- worth seeing a doctor for if this is what you are suffering with.  

I was UTI free for a while, took a good probiotic for flora health, and always had D mannose in my cupboard and any time I felt a vague symptom I would take ( many times this works but not always) but I still found very beneficial to have and will never not have some in my cupboard. I recently experienced a reoccurring UTI after 3 rounds of antibiotics it came back again- very upsetting to the point of depression. It makes me so ill and affects me emotionally to the point where I cant face even going to the supermarket, picking my kids up from school, I’m short tempered with them and my husband because I feel like I can’t cope, I really think the illness is chronic and debilitating and if you are suffering and feel emotional/ depressed please know you WILL get through it and you are strong and you will be healthy and happy again, there is ALWAYS light at the end of the tunnel. Take a hot bath, calm yourself and try and stay positive. I think the illness drags you down mentally as well as physically. I honestly even thought I would have to leave my job and started to feel very alone, it makes you realise how health really is wealth. 

This time I spent 3 days feeling like I was dying because for some reason I thought maybe there really isn’t an infection because nothing ever shows up, maybe this is IC or some kind of flare and I should just ride it out, antibiotics might be making it worse etc etc until eventually one night I broke down and rushed to a walk in clinic where I saw the same dr I had seen for the last course of antibiotics. I told him I felt it had come back he asked me to do a sample.  So- earlier that morning, very first thing when I woke up before I had drank any water or fluid,  and my urine was - well pretty potent- with the infection and all (sorry TMI). I peed in a pot at home in light of potentially going to the drs. I brought it with me to the emergency drs and switched it into the sample pot. For the first time ever, my urine test was positive for nitrates which showed that my body was battling something, although bacteria didn’t show, it indicated there was definitely a low grade infection. The relief that I feel at finally having validation that my symptoms are REAL is empowering beyond measure, has been a huge relief and weight off my shoulders. I think that, as it is a low grade infection, it’s not showing after I have drank gallons of water etc and then seen a doctor mid day and get asked to do a sample. I really recommend this early morning technique next time it strikes you as I finally got answers rather than another trip with the depressing result of ‘well nothing is showing...’

As soon as it showed the low level infection the Dr seemed to have the proof he needed and prescribed 3-6 months low level antibiotic course, as had the urologist (I have previously found despite the urologist advice, drs disapproved of prescribing me because of no bacteria showing so it was always a battle especially to get prescribed a 3 month course.) 

I am now happily on a low level, long term antibiotic for 6 months which will take me through the summer as this is a triggering time for me. After that if there has been no more infection I will review with the doctor and maybe come off them. I also take a probiotic, don’t drink alcohol, limit my caffeine/ soda intake and try to drink plenty of water, kombucha, rooibus tea + almond milk, vitamin water + I find kefir very calming.  I am so happy to finally have a Dr on my side because it no longer looks like I am imagining things or being neurotic. I am so grateful and empowered to have a long term treatment plan. To be on antibiotics long term may not sound ideal but for me it truly is better than the alternative of constant infections. This has been the answer for me and I’m so grateful for modern medicine because my suffering has ended and I’m feeling great. Another thing that I am changing is wearing leggings because I feel very strongly that they contribute to the initial infection for me, I’ve bought some loose, floaty trousers, wear joggers, good quality jeans etc. Sending love to all of you in your journey and pray for health and peace for you 

0 likes, 4 replies

4 Replies

  • tara64874
    tara64874 claire16235

    Posted

    Thank you so much for posting this. I think this is what is happening to me. I deal with UTI symptoms every couple of months (sometimes every couple of weeks) but only one or two of my tests have come back positive. My doctor is at a loss and has referred me to a urologist because my ultrasounds are all fine.

    If I know I'm going to the doctor and will need to give a sample I drink heaps of water so of course I'm very diluted. They should tell you about this stuff! I always hydrate because of the UTIS but if they had told me to do morning samples we might have caught something more concrete by now. Will be doing this next time I get symptoms.

    I'm booked in to see a urologist in a couple of months - would you recommend I see him or should I try to catch a sample on a UTI morning and just take it to my doctor? I'll be telling her about your case smile

    • claire16235
      claire16235 tara64874

      Posted

      I would def still go see a urologist if you have the opportunity,  you may get some answers that your family Dr can’t give and they could devise a treatment plan for you for if it happens again. It will give you more of a foundation when you see drs who don’t know how to treat you as it is so upsetting and exasperating to feel like you’re not getting anywhere. I know, they never tell you do it first thing in the morning, I def think it gives more accurate results. You can get a couple of pots from the drs and keep them handy so your prepared. Wish you all the luck in the world xo 
  • marilee43089
    marilee43089 claire16235

    Posted

    Urine that is diluted from drinking a lot of water will dilute the amount of bacteria seen.  That said, if someone has a raging UTI, even diluted urine will show significant bacteria.  It would seem to me that if you have the severe symptoms you say, your culture should have shown bacteria.  You were getting cultures done, and not just dipstick tests, right?

    If you are taking a urine sample yourself, you need to use a sterile container and the urine needs to be refrigerated or on ice until you get it to the lab.  The bacteria start mutiplying rapidly otherwise and could give you a false positive.

    One more thing...the hot baths....are not a good idea.  Your sitting in water full of bacteria.

  • Micklemus
    Micklemus claire16235

    Posted

    I've always thought 'bracers' are better for me because I don't have to tighten a waist band etc which squeezes my bladder!    I was prescribed a low dose so called prophylactic course of Cipro but the dosage was never specified. I started on that low dose but within 2 weeks the infection came back with a vengeance

    which made me think it'll be the A& E tomorrow but a lady doctor asked me 'do you think you have an infection' & she was the first out of 25 doctors  to ask that question. She got me an appointment early next morning and immediately another mature lady GP said that dose you are on iis very low - double it !

    In fact she gave me a new script for stronger Cipro antibiotics at 500 mg x td........ They seemed to be working and a week went by & I extended the course as per Mimms directive to a months course.

    I firmly believe all this 'hit and miss' empirical treatment is not quite what should occur........

    OK I do not have those awful symptoms I had but I would dearly like to know what the infectious organism was.  This is especially important to me since I am latent TB positive.....  Is my TB actually latent or is it sometimes active?  

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