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    Chronic UTIs, anybody ever have this situation?

    Okay this is going to be long, but I thought I'd toss this out there and see if anyone ever had something similar and was able to nail down a cause.

    Since last March I have had almost chronic UTIs...i.e. while I'm on the antibiotic, no problems of course. Then there's a 2 week reprieve, and boom another UTI. I have to have it cultured every time because it has been different bacteria (some of them rarer ones that are hard to get rid of), and I end up having to change med mid stream when they get the culture back. (Doesn't help that I'm allergic to the main UTI drugs like Levaquin, Bactrim, and Macrobid.)

    The frustration comes when I've been told what to "try" by the urologists and they're sure they know the solution to the problem, so I follow their instructions to the "t" and I still get the UTI.

    I've seen urologists sort of moving up the ladder to more specialized urologists. Still no solution.

    Had every test I could have. At first they assumed it was because I was retaining (and I do during a flare), so it was decided I should cath (which I did)...then they did the urodynamics and said I really didn't need to cath according to the test, but do it once a day at bedtime...now they're saying the the infections must be from self cathing (I buy expensive disposible caths out of my own pocket to minimize infection and use meticulous hygiene) and seem to forget I had the same problem before I cathed.

    Latest specialist said to quit using the test strips, and just go by my symptoms. Trouble is a lot of times I don't have normal symptoms of a UTI. So I quit using test strips, and it all backfired because instead of catching it early, I woke up with one today and I could hardly move my legs...used a test strip, yep bad UTI, and had to go sit in a walk-in for 2 hours so the urine can be cultured...I have antibiotics on hand, but can't take them until I get a sample for a culture (if I don't catch the coughing bug, it'll be a miracle, the waiting room was filled and all those poor little kids were so sick with that awful coughing bug going around .)

    I've had urodynamic tests, CT scan of my kidneys, MRI of my adrenals and kidneys, some kind of IVP type scan...but it was higher tech than an IVP (can't remember the name.) Even had bladder fulguration, under no anesthetic...OUCH!

    Tried antibiotics for different lengths of times...once took antibiotics for a month. I take Methenamine Hippurate, every day which is an "ancient" form of antibacterial that the neurourologist suggested. Always have a culture run to make sure what infection I have. I've tried D-mannose, Vitamin C, Cystoproteck, Estrace cream, Luveena (a vaginal probiotic), regular probiotics, unsweetened cranberry juice, and no matter what I do, I deal with the 2 week cycle, I have a UTI exactly 2 weeks after I stop antibiotics.

    I've had a couple prolapse surgeries, and wonder if that could be causing problems from all the mesh used to get things in their right place (unfortunately another "gift" from MS everything prolapsed due to muscle weakness.) But the urogyn and the neuro urologist said that's not the problem. I'm still wondering if there's a fistula or something that's causing this cycle.

    So if anybody's ever had frequent UTIs and have found a cause that is out of the ordinary, or a treatment I haven't tried, I'd love to hear it

    #2
    I am also taking mathenamine, and the urologist was very adamant that I take it with vitamin C. He said I needed the vitamin C to enable the methenamine to work. He also attributes my commonly occurring UTIs to my self cathing. He also sends in a sample to the lab to be tested so that the correct medication is prescribed. I usually take ciprofloxacin, but have taken Bactrim a few times. I don't know if this helps any, but I had to chime in. Good luck to you.
    hunterd/HuntOP/Dave
    volunteer
    MS World
    hunterd@msworld.org
    PPMS DX 2001

    "ADAPT AND OVERCOME" - MY COUSIN

    Comment


      #3
      Hey Hunterd,

      Sure it helps to know that I'm not the only one dealing with frequent UTIs.

      I pop Vitamin C like it's candy under the assumption that the methenamine and acidic ph in urine will keep infections from happening...just hasn't worked for me.

      It's really a catch 22... UTIs if we retain and don't catch and UTIs if we do cath.

      the urologist now wants me on flomax with the goal to be cathing as little as possible., while keeping all the other stuff going like methenamine, vit. C, etc. We'll see if that works or not.

      The part I hate worst is having to go to a walkin on the weekend to ask for a culture. During urologist working hours, it's so much easier to just drop it off.

      Hang in there !

      Comment


        #4
        I also have frequent uti's. exactly like you every two weeks after stopping antibiotics. I am currently dealing with one. Yuck! My nuero urologist put me on flimsy and vesicare but it didn't change uti's. so wanting relief!

        Comment


          #5
          It's your anatomy

          Some women are just 'lucky' in the way their body is built So with MS too you are double 'lucky'
          Try to make sure you wipe front so back ALWAYS and I am sure you already do. Maybe if you kept some wet ones unscebted. (like diaper wipes) next to the toilet you could clean with those too.
          Cranberry juice is said to help cut down on UTI's too.
          My sympathy.
          techie
          Another pirated saying:
          Half of life is if.
          When today is bad, tomorrow is generally a better day.
          Dogs Rule!

          Comment


            #6
            Originally posted by Torn View Post
            I also have frequent uti's. exactly like you every two weeks after stopping antibiotics. I am currently dealing with one. Yuck! My nuero urologist put me on flimsy and vesicare but it didn't change uti's. so wanting relief!
            Sorry to hear you're dealing with it too. It's so frustrating to try everything they suggest (and that evidently works for most people ) and then get another one.

            A new med or strategy gives me hope, and then 2 weeks later...here we go again.

            There's got to be some clue hidden in the 2 week lapse without one...it's so cyclical. Maybe the body retains the effect of the antibiotic for that long, I don't have a clue.

            Comment


              #7
              Originally posted by techie View Post
              Some women are just 'lucky' in the way their body is built So with MS too you are double 'lucky'
              Try to make sure you wipe front so back ALWAYS and I am sure you already do. Maybe if you kept some wet ones unscebted. (like diaper wipes) next to the toilet you could clean with those too.
              Cranberry juice is said to help cut down on UTI's too.
              My sympathy.
              techie
              Maybe this is tmi but I've gone one better, I use a BZK towelette after wiping with TP, hoping to cut down on any lingering bacteria. And as far as cranberry juice, I've consumed so much unsweetened cranberry juice, I don't need to apply blush anymore...I'm sure it's what accounts for my rosy cheeks.

              I know they say it's anatomy, but I didn't have this for 8 years, then I did and 9 months later, still do.

              My urogyn thinks it has something to do with the lesion in my medulla...he says it's the center for micturition (fancy word for peeing) ...but that wouldn't explain why the infections. And I'm beginning to feel sorry for that lesion, it gets blamed for so many of my problems....pee problems, high blood pressure spikes, tachycardia, facial and tongue problems...if lesions had feelings, it would feel picked on since it receives so much blame.

              Here's how anal (not an appropriate word for this problem, I guess) I've gotten. Due to the MS, sometimes I have a hard time giving a specimen at the doctors, so I usually take one in with me, or drop one off. It has to be in a sterile cup or they won't accept it, so my husband suggested just buying some sterile cups off amazon so we'd always have them on hand (did you know you can buy 100 sterile cups for under $25 on amazon, LOL, this is information I didn't ever want to know)

              Comment


                #8
                rdmc~ I have suffered from numerous uti's in the past, but since my naturopathic Dr. told me about using probiotics while I was taking an antibiotic (and not afterwards), the problem has lessened considerably!

                Now I take a probiotic as a preventive measure - not every day, but when I can remember. If you decide to go this route, get the kind that need to be refrigerated as they have live microorganisms.

                Here is an article from NHI that explains the significance of taking a probiotic http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2684288/

                Hope this info helps and be well
                1st sx '89 Dx '99 w/RRMS - SP since 2010
                Administrator Message Boards/Moderator

                Comment


                  #9
                  Originally posted by Seasha View Post
                  rdmc~ I have suffered from numerous uti's in the past, but since my naturopathic Dr. told me about using probiotics while I was taking an antibiotic (and not afterwards), the problem has lessened considerably!

                  Now I take a probiotic as a preventive measure - not every day, but when I can remember. If you decide to go this route, get the kind that need to be refrigerated as they have live microorganisms.

                  Here is an article from NHI that explains the significance of taking a probiotic http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2684288/

                  Hope this info helps and be well
                  Thanks for the tip I'll check out the brand. As of now, I'm using three probiotics.

                  One probiotic I take with the antibiotic called Florastor (it's supposed to help you from getting c-diff), another between antibiotics called kyo dophilus 9 (I think that's the name) and now my urologist also has me on Luvena also...it's a vaginal probiotic.

                  Comment


                    #10
                    Do these contain live cultures? That's an impt factor. Mine contain 10 billion active cells (from Natural Factors) and it's double strength!

                    8 bil L. rhamnosus
                    1 bil L. acidophilus
                    1 bil L. bifidum

                    You will want to check the expiration date on the bottle too - sold at nutrition shops, health food stores, etc. and kept under refrigeration.
                    1st sx '89 Dx '99 w/RRMS - SP since 2010
                    Administrator Message Boards/Moderator

                    Comment


                      #11
                      I'm following this subject because I too suffer from chronic UTIs. I am lucky that mine are closer to 4 weeks apart. I have an appt. with a uro-gyn in January to start the merry go round. I can't wait
                      "Dogs are not our whole life, but they make our lives whole."~ Roger Caras

                      Comment


                        #12
                        Originally posted by Seasha View Post
                        Do these contain live cultures? That's an impt factor. Mine contain 10 billion active cells (from Natural Factors) and it's double strength!

                        8 bil L. rhamnosus
                        1 bil L. acidophilus
                        1 bil L. bifidum

                        You will want to check the expiration date on the bottle too - sold at nutrition shops, health food stores, etc. and kept under refrigeration.
                        I'll have to check mine out, I don't think it's that high a count...or find a bottle of your brand and give it a try. You said Natural Factors...which one, I did a quick google search and found an Ultimate Multi Probiotics from that maker, is that the one.

                        The Florastor is a probiotic that was recommended by my GP awhile ago especially for when I take antibiotics. It's a probiotic, but not in the normal sense, not sure what the difference is, but he says it is best for helping to fend off C-diff (I think it is actually a yeast, but a "friendly" one.)

                        I've had some strong antibiotics in the past couple of years (got MRSA when I had my pump repair surgery and had to be on Vanco for 6 weeks, and had to be in hospital for antibiotic for one UTI when it came back resistent to all but one IV antibiotic.)

                        So Lord knows I probably need lots of probiotics.

                        Comment


                          #13
                          Originally posted by woohoogirl View Post
                          I'm following this subject because I too suffer from chronic UTIs. I am lucky that mine are closer to 4 weeks apart. I have an appt. with a uro-gyn in January to start the merry go round. I can't wait
                          First place I went when I started having chronic UTIs was to my urogyn...he's the best. And since I had had surgery in the past, I figured maybe another prolapse was the problem, but he said it wasn't the issue. Then I went to a neuro urologist, who confirmed it wasn't from the previous surgeries.

                          I have high regard for urogynecologist...mine is very informed about MS, and a wonderful doctor to boot. Darn MS can cause everything from spasticity to spasm to prolapse, and they help to sort of what's causing what.

                          Good luck with your appt.

                          Comment


                            #14
                            Originally posted by rdmc View Post
                            I'll have to check mine out, I don't think it's that high a count...or find a bottle of your brand and give it a try. You said Natural Factors...which one, I did a quick google search and found an Ultimate Multi Probiotics from that maker, is that the one.
                            Mine is Acidophilus & Bifidus. I would not order online. It needs to be kept refrigerated. You poor dear~ I hope you find relief soon.
                            My best~
                            1st sx '89 Dx '99 w/RRMS - SP since 2010
                            Administrator Message Boards/Moderator

                            Comment


                              #15
                              Hi rdmc,

                              Sorry to hear what you are going through - I know how tough UTI's are and dread them myself.

                              Think I've commented before - but when my primary doctor told me to start on a probiotic (he recommended Align) during my last UTI - when it appeared to work well for me, he said to stay on it permanently. I've since switched to 'New Chapter - all Flora' that I've heard from many is a good one. I have heard that more 1 billion vs 10 billion, etc) is not always needed - but there are alot of articles that say different data on that.

                              I also do the cranberry supplements, lots of water, yogurt and vitamin C. Sounds like you already are doing these too.

                              For your frustration of getting the sample in for a culture. I have a good setup that may help. My doctor calls in the lab script to the hospital that is close to my house. This way the sample can be dropped off at any time 7x24. Since my husband drops it off; it gives us much more flexibility and is quick. I have the sterile cups and wipes at home (each time we drop off we get more cups from the hospital) and I ordered a package of the wipes.

                              Hope you find the culprit and get past this.

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