UTI that won’t go

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On the 5th July I came home from work doubled over in pain just to the right of my belly button which turned out to be a UTI, I hadn’t experienced any pain before that day but since then it hasn’t cleared!

 I had 4 courses of antibiotics and then got sent for an ultrasound which all came back clear, another doctor then gave me another course of antibiotics which still didn’t clear it and I’ve now been referred to a Urologist (appt next week). A urine sample has been sent off to the doctors every 2/3 weeks since July and hasn’t come back clear once. The doctor thinks that the urologist will most likely want to do a Cytoscopy. Since all this started I haven’t felt majorly ill, I just very occasionally get the pain to the right of my belly button, but not bad enough to stop me doing anything, and have had a few occasions where it’s burnt a bit when I’ve urinated. I’m only aware the infection is still there as my urine is so much darker than it has ever been. The day I got my referral from the doctors she tested a urine sample whilst I was there which also showed traces of blood in my urine.  I’ve also been experiencing extreme fatigue and rapid weight gain over the last few years (not sure if these symptoms could be related?). 

I just wondered if anyone had any idea what could be causing this? 

A bit about me to help: I’ve got ‘borderline’ under active thyroid and currently on 50mcg a day, was also treated last year for low B12. I’m 22 years old, I have horses so lead an active lifestyle and eat healthily. I don’t drink or smoke. 

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  • Posted

    You're the second poster recently that has a UTI and doesn't have the typical symptoms.  It puzzles me.

    Your urine could be dark due to having blood in it or it could be dark due to being dehydrated.

    It is not uncommon to have microscopic blood in the urine with a UTI.  Mine always has it.

    Hopefully some others will chime in, but I have never heard of having pain to the right of the navel with a UTI.  Usually pain is in the low abdomen.

    If you had a kidney stone, etc. it would have shown up on the ultra-sound I think.  Hopefully the Cysto will bring you some answers.  

    Do you know which bacteria is in your urine?  If not, please ask.  Also which antibiotics have you taken and for how long.  During taking them, did the urine color look ok and was the pain gone while on the antibiotic?  Do you know if the antibiotic cured the infection temporarily, but the infection returned?

    • Posted

      Hi, thanks for your response. 

      I drink 2-3 litres of water a day so unfortunately don’t think that’s why my urine is dark. 

      I’ve taken Trimethoprim, 2 courses of Nitrofurantoin, Amoxicillin and Cefalexin, all for a week each. During taking all of them my urine looked clear again for the first half of the week then went back to dark, except the nitrofurantion where my urine was bright yellow, however I never did a urine sample during a course so I’m not sure if it temporarily cleared. 

      On my most recent test it says ‘URINE INVESTIGATIONS 

      WBC 176 x10*6/L

      RBC 417 x10*6/L

      EPITHELIAL 11 x10*6/L

      URINE PATHOGENS FOUND 

      CULTURE >10^5 cfu/ml of

      Coliform species‘. Not sure if that means anything?

    • Posted

      Coliform species does mean something but I didn't know what til I searched for it (you can easily do this too!).  It's apparently a broad definition that can include several different types of bacteria which usually originate from the poo side of things.  You and your doctor need to know exactly which bacteria is causing your problem so make sure you get him/her to find out.

      I'm making a wild guess here but it could be E.coli and, if it is, is hard to get rid of as it protects itself with a biofilm, which means it secrets a layer of stuff over a colony that antibiotics often can't penetrate.  This is where D-mannose comes in as it can gradually wear away the biofilm.

      I suggest you first find out which bacteria is causing the trouble, then, if it is E.coli, start on a regime of D-mannose straight away.  If you hunt through the threads on this section of the forums you'll find plenty of advice about how to take it. 

      If it's not E.coli your doctor will hopefully prescribe something that is actually targeted to whatever it is - the list you've mentioned so far makes it sound like they've been stabbing in the dark.  It's so important to treat the actual bacteria rather than give a general 'hope it works' antibiotic!

      One warning is don't let your doctor prescribe Cipro; this is a broad-spectrum antibiotic which will kill many things but not E.coli.  It's very strong and has the potential to damage you as well as bacteria.  (You can check for discussions about it on here as well).

      Apologies if this sounds a bit scary but antibiotics are definitely not sweets and should be treated with the greatest respect.

  • Posted

    I understand you 100%

    My uti started on Sept 16th and I have not been the same since.

    They gave me sulfa.. worked a few days. then came back I was on macrobid same thing then keflex 4 times a day. I finally went to a urologist and I'm waiting on scan results. Kidney looked fine, but they want to rule out a stone that ultrasound possibly couldn't pick up. My infection was e coli and yes D mannose helped me so much. I finished it on Friday and I feel awful yesterday and today. I will be purchasing more but I to know exactly what is going on.

    I'm thinking cancer or something. It's been way to long to carry this infection. 

    Hopefully we find answers

  • Posted

    similar experience here.. 

    Got prostate infection one year before. I was totally fine, on a festival day, I consumed  sweets and pastries, then got UTI. Had mild urinary irritation for few days, took macrobid, dmannose etc for few days, still uti  persisted. To my surprise i got flank pain one fine morning. Then had couple of days of fever in 99s. I took two antibiotics this time - cefuroxime and nitrofurontin and the fever stopped and things improved (i also followed a strict low calorie diet).

    Stopped macrobid, and consumed dmannose, its been a week still the urinary irritation is there, but no flank pain yet. Mannose definitely helped control/limit the UTI, however the symptoms were still there (WBC count in culture 5-6). Then took macrobid and citralka syrup for couple of nights -  I did not want to take heavy dose of antibiotics as I know that it takes couple of weeks for the Kidneys to heal (after prev infection) and most antibiotics contribute to some amount of kidney damage. 

    So, in my observation, antibiotics sometimes helps especially when you have a fever , flank pain etc, however for persistent UTI, it may not always help. 

    Finally, I started on a watermelon fast and taking citralka syrup couple of times daily, and the UTI symptoms subsided, glad I did not get a kidney infection this time, which would have affected my eGFR.

    • Posted

      also forgot to mention, few months before I took fosfomycin aiming to clear up the infection, however, it made things worse and then I got an UTI as well after taking that antibiotic.  I think its due to that the antibiotic destroyed my gut bacteria, induced diarrhea and  lowered my body's resistence. Ecoli only became  more resistant after taking fosfomycin. I think certain antibiotics works great to control the ecoli esp the cef ones - cefixime or ceftriaxone, but certain antibotics create more trouble than of any use.

    • Posted

      My two days of fruit fasting helped a lot and the urinary irritation is minimal. My urine culture report shows the organism as klebsiella (previous reports have ecoli). Anyways, based on the cuture sensitivity, i am taking half the dose of cipro and half dose macrobid for the next 3 days to eliminate the infection. Hope it works.
    • Posted

      David, you appear to be well researched on UTI's and the antibiotics.  Good for you!

      I agree with you that the cephalosporins are best to treat ecoli UTI's.  I also agree that when an antibiotic fails, the bacteria get more resistant.  For that reason, I think initially it might be best to stay on an antibiotic longer and a higher dose.  

      Yours is the first time I've read a patient with the Kiebsiella.  Does you doctor have anything to say about that?  The antibiotic mixed cocktail you're taking is interesting.   Keep us informed as how your doing.  I'm interested.  

    • Posted

      Hi David, you say you're taking 'half the dose of cipro and half dose macrobid' and I just wondered when you got prescribed the cipro as I can't see it mentioned in your previous posts. 

      Cipro (along with the other fluoroquinolones) is only advised for klebs treatment when there are problems with taking other ABx (carbapenem allergy or major beta-lactam allergy).

      If you've taken cipro before please be aware that its adverse effects are cumulative meaning that you might be ok for the first one or two courses but sooner or later you may end up floxed (i.e. FQAD or QTS - depending on whether you are US or UK!). I've already posted on this discussion about the dangers.

      Klebs is serious and can lead to sepsis so be careful.  You and Marilee both know that bugs can easily become resistant and klebs is apparently good at building up colonies that can resist treatment. I just looked at medscape that suggests combinations of ABx can be effective and it does give quinolones as an option but I would always advise never to take one of these (e.g. cipro) unless you have absolutely no other alternative.  Please see the discussions here on Fluoroquinolone Toxicity for more information.

      Stay safe

    • Posted

      ...and don't forget to take lots of varied probiotics to help replenish your gut flora!

    • Posted

      Just an update, I got another urine culture and routine test done, and no growth observed. Also count of rbs, wbc, epithelial cells etc are normal.  creatinine - .9 is normal as well.  So, the nightly  dose of Macrobid seems and cipro seems to work .  However, I still have slight burning sensation during certain times of the day, so will continue on the  nightly dose of macrobid for a week or more.  Noticed that when I have alkaline foods  (watermelons, carrot juice) the burning sensation subsides, so will continue with such a diet.

      @miriam, I know a local doctor who listens to me and gives me prescriptions based on the culture report and my preferences. I usually stick on to the basic antibiotics like cefuroxime (my fav), macrobid or cipro.  Only during the initial few days of infection I take a higher dose of antibiotic - say 500 mg of cefuroxime/cipro morning and night, rest of the days I have either 50mg macrobid at night or combined with 250mg of the above drugs. 

       

    • Posted

      Hi David,

      Thanks for the update.  My previous reply was to advise you that there are many dangers associated with Cipro - which isn't a "basic" antibiotic, it's a synthetic drug originally developed to combat serious things such as anthrax and is also used as a chemotherapy drug. 

      It's main attribute is that it will kill anything which is why it's popular as a broad-spectrum antibiotic.  It was never intended to be used as a 'routine' or basic AB but has become so due to doctors liking the way it gets results without them having to hunt for what bug exactly is causing the problem.  Unfortunately, Cipro and the other fluorquinolones will also damage your own cells by increasing oxidative stress plus they will happily enter your mitochondria and severely mess them up (they have similar DNA enzymes to the bacterial DNA which is targeted by the FQs.  This is how they kill bacteria - but they are killing your mitochondrial along with them!  The affect is cumulative - you can tolerate a certain amount of damage (some people much more than others) but if you take enough it will get to you eventually.

      Please take a quick look at the discussions on fluoroquinolone toxicity on here:

      http://patient.info/forums/discuss/fluoroquinolone-toxicity-syndrome-427305

      and you'll hopefully see that I'm only writing this as a warning.  If you've had several courses (or half courses) of Cipro you can only assume you've got away with it so far!  Your friendly local doctor isn't actually doing you any favours by prescribing this all the time (and the other fluoroquinolones are just as bad).

      Good luck with it all.

  • Posted

    Hi , i just wanted to ask did your UTI ever resolve? I am in a similar position on my 4th round of antibiotics. Started with Nausea and cloudy urine and i headed down to doctors to investigate further, i have been on trimethoprim, nitofurenton , keflex and now doxycline ( i have allergies to alot of ab)  i have no stinging either down below. Just tiredness, nausea , bladder twinges and flank pain.  I have had renal ultrasound and ovaries etc. I am not sure how to progress and am on sick leave from work. My urine is testing high +++leucocytes, + protein and some blood. No nitrates and i am not sexually active. Doctor  seems baffled....
    • Posted

      well, I think if protein and blood shows up in your report, there could be some amount of kidney damage (it would heal eventually if damage is minimal).  bacteria can for weeks or months - ecoli survives using pod like structures/biofilms for months and only certain drugs/Abs can penetrate these.  I think the best bet is to take a culture report and make changes to the diet. After your initial dose of antibiotics the bacteria should be almost zero in your culture report. Your body is capable of eliminating the left over bacteria,  sometimes a subsequent low dose of macrobid can help.
    • Posted

      Thanks david for reply, i have just completed 7 day course of doxy and two days later the symptoms have returned and blood in urine and leucoytes sky high. The side effects of doxy where bad enough but it hasnt cleared the infection fully. 🙁 I have now a referral to urologist and abdomen scan. I am really not sure where i go with this and am concerned the GP will just try and throw more antibiotics at me in the hope they may work! I would like to try and keep off the AB but just worried i will have a full blown kidney infection on my hands on christmas day. 

    • Posted

      Interesting that you are on Doxy.  That antibiotic has never been suseptible for any of my UTI's.  Right now I am UTI free (well, at least I am asymptomatic).   When my UTI's started in October 2016, I was on antibiotics one right after the other.  In 4 days or less after I completed a course, the UTI was back.  What I finally did was go on a long daily course of antibiotics (Ceftin for 3 months).  This is not a good thing to do because of the risk of antibiotic resistance, etc.  However, what choice do we have if we keep getting the UTI's.  To ignore, risks kidney involvement or even sepsis.  

      What kind of scan are you getting?  Abdominal CT scan?  I got one of those too, and it didn't show anything.

    • Posted

      Hi, abdomen ultrasound i believe just waiting on appointment letter. The keflex didnt do anything for me, or nitro and my urine did not change from pinkish colour however ,as soon as started the doxy there was instant relief. I have not taken antibiotics in 12 years so i think this amount of antibiotics has been a real shock to my system! They did query gallbladder and also pelvic inflammatory disease as i am having some left ribcage pain radiating into back and lifting my  child is flaring it up and doxy is a drug that responds well for PID.  So your correct Doxy is not the first choice really, another weird symptom i am having is on a full bladder i have an internal burning pain radiating up my stomach. Feels awful and very nervous just what it is and your mind whirls .....I am glad your are UTI free at moment , may it last 👍

    • Posted

      Maybe you have more than one thing going on medically.   I don't think Nausea is a common symptom for a UTI unless it is caused by antibiotics.  Burning pain radiating up to the stomach is also not a common symptom.   For the last year, I've read this and other forums from patients with UTI, so I'm basing my opinion on that, plus all the different medical articles I've researched on the web.

      Having enough blood to discolor the urine is worrisome.  I always have some microscopic blood in my urine with a uti, but never visable blood.

      I hope you report back with your status after you get the tests.  I think it helps everyone if posters let us know the resolution of things.

       

    • Posted

      @kelly

      Get the ultrasound and  urine culture done.. Sometimes stones in kidney/bladder can cause blood in urine and bacteria can hide in them as well.  FYI, Ultrasound cannot detect smaller stones. .  I am currently on milder antibiotics (nightly dose of 250mg amxocy clavunate +  100 cefixime or 50mg macrobid).  I drink lemon juice/acid cider vinegar in the morning. most of my uti symptoms are gone

       

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