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UTI question

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    UTI question

    I have had UTI infections over the past years that are treated successfully with macrobid. My symptoms include frequent/urgency (more than usual, which is always a lot anyway ) and an odor that tells me I have the infection.

    I hadn't had an infection is over 8 months; maybe the cranberry supplements, yogurt, vitamin C and lots of water has been working.

    Last month the increased frequency with no control at all started occurring but no odor. I had a urine analysis and it came back all clear - no bacteria - this was exciting for me as it is not a common result for me in the past.

    Anyways, the frequency and lack of any control continued and I had another culture 3 weeks later, started macrobid my doctor prescribed till the results of the analysis came in - the results showed another type of infection, the culture (initial result) showed Pseudomonas but not enough to say an antibiotic was needed, later the analysis (takes a few days) came back, and showed a higher number of cells where the PA (my doc was now on vacation) said Cipro should be taken to address.

    My questions:
    - Goggling Pseudomonas sounds like it is likely from hospitals or cathing (I haven't done either) and the infection sounds a bit concerning to me - but not very clear either. Has anyone had this type of infection ?

    - I've also had an irritation/soreness/slight burning feeling externally - felt it slightly last month but got more noticeable after completing the Cipro. My doctor thought it was a yeast infection from the antibiotics, but told him I didn't think it was. I have been using gynelotrim cream externally that seemed to help after a couple of weeks, but is back again now - thinking maybe irritation from toilet paper wiping too hard ?

    - The frequency seems to be good one day and bad the next

    My doctor also said to start a probiotic (I'm taking Align) to replace the good bacteria lost when taking antibiotics.

    Thanks.

    #2
    Hey BG,

    Sorry to hear you're dealing with this. I've been in a similar boat. Finally changed urologists and now I think we're making some progress.

    For years I'd have a UTI occasionally, but then they started coming fast and furious, and I never felt like I was completely over them. Because I can tell how my body feels, how my spasticity feels etc.

    Mine was a weird bug too...proteus mirabellis. I've finally found a urologist who's being proactive and looking from things a little differently instead of handing me antibiotics and that's it...I've been having UTIs since March, with only a break of a day or two between...and my other urologist proved uesless.

    I just looked up pseudomonas and it sounds like the same type of stubborn bacteria as the proteus is. I was on antibiotics and my urinalysis tested clear, yet I was having symptoms, and sure enough they cultured proteus off a clear urinalysis. That's why I'd insist on another culture, even if your urinalysis appears clear.

    And as far as your symptoms, I tend to feel my Utis more externally as my MS has progressed. I don't have the "common" symptoms anymore when I have a UTI. Don't know why that is, mine may just present as generalized burning, not necessarily burning at the urethra...sometimes I have no pain at all, just a bit of incontinence and I'll test and voila I have onel



    Also I'm using two creams, Estrace (as a few times a week as they believe it helps prevent post menopausal women from getting UTIs...and my urologist introduced me to a product called Luveena...you buy it over the counter and it's a probiotic you use vaginally.


    I was in the hospital for 4 days on Gentamycin and it was the only time I felt my "normal" in the past 5 months. So the urologists really thinks I'm running a low grade infection for whatever reason, the stones, or calcification, and that is what makes me feel "sick"....because I just haven't been my usual, fun loving, jovial self Seriously though, I've just felt "off", "sick", just not my "normal" and I'm beginning to agree with her that's it's some low grade thing hiding.

    Also, my pump has been affected. I had ups and it did absolutely nothing. They even did the dye test to check it. Finally gave me a good size "up" and I did respond.

    So I can empathize, and maybe suggest it's time to get a new urologist who'll look at the problem from a different angle. My former urologist was just into handing me antibiotics every two weeks instead of getting to the bottom (excuse the pun) of the problem.

    Hope you find some answers.

    Comment


      #3
      Hi rdmc,
      I thought you might respond as I've seen many of your threads on this topic and the challenges you've been going thru. Good to hear you are making some progress.

      I'm not seeing a urologist, communicating with my PCP who is great and helps me over the phone since he understands how hard it is for me to get there. He did suggest if things continue to see a urologist/gyno. I'm going to give some more time since it just started about 1-2 months ago.

      Thanks for all the information - going to look it all up. Do you see the Luveena helping ? I started Align oral probiotic a couple of weeks ago - not sure I notice a difference yet.

      Completely agree with you regarding cultures being so important - such a difference in the analysis vs. culture results on my last one, takes time but worth it to detect. I think I used terms incorrectly in my post; I always have both done, my doctor insists which is good. So the first analysis and culture came back clear - even though I felt symptoms - maybe too early ? not sure why.

      Is your pump working well for you and the new dose ? I'm still at the same 140, going for my refill next week. Still very happy with it but not happy about the upper body/core weakness that makes life hard. But have to remind myself it beats pain

      Comment


        #4
        Also wanted to add:
        What triggered you going to the hospital ? To get the Gentamycin antibiotic ? And this was the only treatment that helped you ? For just a short term ?

        Comment


          #5
          Hey BG,

          I just had my pump refilled last week. I think I'm up to 120. Sorry to hear about your core strength, so the pump didn't change that. I actually have lost some mobility since I've had the pump, but that's over the course of 18 months and don't think it has anything to do with the pump, just the fact that "progresses diseases progress." At least I'm a lot more comfortable with it than I was without it. I have gone back to wearing the binder 24/7 because it's floating, and the binder really helps stabilize it. Physiatrist isn't concerned at all. Refill went without a hitch and she said that was her only concern with the floating.

          Here's the deal on the Gentamycin. I am allergic to the three main meds used to treat bladder infections, Macrobid, Bactrim, and Levaquin...so that's why I get a culture everytime. They usually start me out on Doxy...then I almost always have to change when the culture comes in.

          The UTI that ended me in the hospital was only susceptible to Bactrim and Gentomycin...thus the hospital stay. If I had had time, my GP could have ordered some Gentimycin shots and I could have gotten them in the office...but I was pretty sick by the time the whole thing was figured out, I had been on another antibiotic for the days it took to get the culture back, and since it wasn't helping, I was pretty bad, spasticity through the roof, pain, etc.

          In fact, had a procedure in my urologists office last week, and she gave me a Gentomycin shot after the procedure, to try to help rid me of the UTI, and told me to keep taking the Methenamine.

          I'm also seeing an allergist to see if some of the meds I'm allergic to, I can take in an emergency.

          I swear, I'm collecting dr's like a kid collecting baseball cards. The appts seem to be all I do, of late, and I agree, getting to them is the hardest part. I'm totally worn out by a visit. I come in huffing and puffing and they have you go to the last room in the row ...and the nurses get a little impatient when it takes all you can do to balance on the scale. Can't get started on a dr. rant...they really are trying to help, but office staff needs some lessons on compassion and patience, IMO.

          Well, the new urologist found scarring in my bladder, cauterized some areas (that was ouchy) and then showed me the other urologist report from just a month ago when he did a cystoscopy where he said everything was wonderful, no problems whatsoever. She then told me my bladder didn't get that scarred in a month...so I'm glad I switched to this new dr. The scarring is probably from frequent utis and she also suspects kidney stones...so yet another test. I've sort of wondered about stones because I've been in some "infections" where it was bad and terribly painful, and then I was better, suddenly, and I thought I might have had a stone.

          The inconvenient thing about MS, is you are so used to weird stuff going on, that you disregard things, sometimes, that probably need attention. However, I did go to the ER once when I thought I was having a stone, the dr. looked at my chart and said, "Hmm, MS...well it's probably muscular." Sent me on my way with a muscle relaxer, pain pills, and didn't look for a stone. They did do an x-ray to make sure my catheter was in place because my spasticity was so through the roof...so I never headed back there when I had similar pains. Not that they can do alot for a stone unless it gets stuck.

          That proteus bug actually produces stones, in and of itself, and can hide, then cause other infections with different bacteria...weird. From what I read about the Pseudomonas, it's not one you want to mess around with either. Both supposedly rarely show up unless under certain circumstances, and I didn't meet any of the criteria for having it, and as you said, you didn't meet any of the criteria for having the pseudomonas.

          If your UTIs become more frequent a urologist or uro/gyn is good because they can tell you what they think the cause of it might be, like retention, etc. I saw a urogynecologist for years, still see him for my yearly. He was really up on MS, because MS can cause prolapse (which can lead to UTIs) and uro/gyns specialize in pelvic floor issues.


          As to the Luvena, it's good stuff. No problems with it...trick to using it though. Make sure you use it right before you go to bed, and try not to get back up once you've used it. The consistency is thin, not good for staying in place, but if you use it right before bedtime, by morning everything seems to have resolved.

          http://www.drugstore.com/luvena-preb...xp307979?tab=1

          Hope you can get rid of the nasty pseudomonas. Make them do another culture. Like I said, my urinalysis was clear, not a leukocyte in sight (that rhymes), yet I cultured the bacteria.

          Comment


            #6
            Hi rdmc,

            Yes; my PT that comes to my house 2x week says the same; that its hard to say if the weakness is from the pump or the progress of MS. I say the pump cause of the timing but not really sure as I know weakness has increased since the I got the pump.

            Do you think the 'floating' is due to the sack the pump resides in ? Is the binder limiting ?

            Sounds like you have gone thru alot and brave. I went to a urologist once (very nice) and got so worried before and during - its so tough overall and not being able to move makes me feel so out of control. The idea of cathing is a big fear factor for me too - it was introduced to me when in in rehab after the pump surgery. I found out my structure is a bit difficult, they did it once, quite uncomfortable, not sure how I would do it myself and I turned the option to learn from a nurse at home (for then and now at least). Anyways the urologist wanted to run tests and I never went back

            Kidney stones; I think they should be able to tell if you have them (while still there) - you probably know already but drinking a lot is key. My husband experienced an ER run with them a few years ago.

            For doctor appt I always call ahead of time to try to ensure they accommodate best they can, which sometimes works out well , and sometimes not.

            thanks for all the info/tips - I laughed when you say best not to get up after the luvena - I get up a lot during the night even with no uti issues

            I wonder if the pump/baclofen plays any part with all this too.

            Comment


              #7
              BG,

              the self cath procedure took me awhile to get the hang of. I found out the pain was coming from too large a diameter in the cath. They normally start you out with a 14 Fr, FR stands for French and it's just a unit of the measure of the diameter of the catheter. I found a 10 FR was much more comfortable and I buy a brand my insurance won't cover, but it's easy and painless, so I use it.

              But you may not have to go there. If retention is causing a problem there are some pills that may help. Flomax helped me for years.

              I can understand your trepidation at finding a urologist or uro/gyn to accommodate your disability...but if you ask your neuro for a recommendation, then call ahead to let them know you need help, I'm sure they'll accommodate you. My urologist and Uro/gun are both great about helping me with my legs, and understanding when my spasticity causes problems...which really hasn't happened since the pump.

              But for now, main thing is figuring out what's causing the discomfort, so try the Luvena, and to make sure the UTI is gone, get a culture...that seems to me like the place to start.

              Oh, and yeah the pump evidently came out of it's pocket...guess it got bored and wanted to do a walkabout. Actually the binder is fine, I take a 4 panel and cut it in half, so the two panel just goes around my abdomen.

              Hope you start to feel better soon.

              Comment


                #8
                thank you - you too !

                Comment


                  #9
                  Symptoms of UTI with no infection present can be indicative of a different type of problem, such as kidney stones, or Interstitial Cystitis (IC). You might want to consider seeing a urogynecologist if you are looking for a new doctor or a second opinion.

                  In my case, when I had some severe urinary issues and pain, the ER sent me home saying I had an IC flare and gave me a painkiller shot, but in fact the problem turned out to be bilateral kidney stone blockages (which my urogyno figured out - thankfully before there was any damage done). I think the ER didn't look past the IC diagnosis, just as many doctors don't look past an MS diagnosis. You can't always blame everything that happens on one of your existing medical issues.

                  Don't give up and keep looking until you get the help you need.

                  Comment


                    #10
                    Here's my update in case it can help you.

                    My PCP suggested I get a urine anaysis/culture every 3 months; but did not see any value with getting another now since being on antibotics already a couple of times recently.

                    I used the gynelotrium cream for the irritation and it did seem to go away Not sure if it was cream or time or probioitc.

                    I've continued with the probiotics and the frequency I had recently has improved - along with my overall 'normal' frequency where I got up muliple times a night on a good night with no UTI. Almost having to pee every couple of hours.

                    Not certain; but it seems like the probiotic has helped me a lot. Maybe the good bacteria and flora (?) was needed for me ?

                    I am taking the 'Align' probiotic every other day and am happy to see a difference with my frequency. I still have urgency and incontinence but it is a major improvement if related. Since a lot is bacteria related it might be reason for the improvement - if it is I wish someone (doctor) would have suggested to try earlier

                    I still plan to get checked for UTI in another couple of months.

                    Comment


                      #11
                      bluegiraffe - Thank you for the update. Glad you are doing well.

                      In addition to the probiotics, I was just wondering if you have you changed your diet at all ? Something like IC can come and go based on your diet. I actually regulate my IC flares by watching my diet and taking an OTC med.

                      Comment


                        #12
                        Hi cosake
                        No I haven't changed my diet recently - just the probiotics that are new, I just checked with an apocathary near my house that sells health supplements, compounding meds, etc. and they said the probiotics can definitely make a difference.

                        I have been ensuring I drink at least 6 glasses of water a day, have a yogurt, cranberry supplements and drink juice to get vitamin C daily. All to avoid UTI occurrences.

                        What do you follow ? and what OTC do you take ?

                        Comment


                          #13
                          I've thought about doing the probiotics but two of my doctors didn't feel that I would get enough benefit for it to be worth the expense.

                          I can't (shouldn't) have cranberry, citrus, Vitamin C or caffeine, to name a few. They are all irritants to the bladder lining when you have IC. I can do very small amounts of each and when I do, I always take Prelief, which is an OTC acid reducer pill that helps prevent irritation, or makes it so the irritation is not as bad if I'm "naughty" and eat something I shouldn't.

                          I definitely can't have anything spicy or it causes unbelievable pain for days. I'm very fortunate to know what my triggers are so that I can manage it mostly with diet.

                          I was taking hydroxyzine for awhile, and also Vesicare, but it after a few months they seemed to stop working. Now that it's mostly under control I don't worry about the meds because I'd prefer not to be taking anything extra.

                          I am on Gilenya as my MS med.

                          Comment

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