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  • Elmiron help with UTIs?

    i get horribly frequent UTI's, i'm talking, like one or two a month. its actually scary because i've never had them this frequent before. But ever since my IC got bad, the UTIs have tripled. i know that they are UTIs and not flares. Its a hassle having to go to the doctor this often because not only is it horribly painful, i cant go on leaving work for all these appointments. I used to praise D-mannose, but now thats not even helping me anymore.

    the only thing i can think is that my lining is in horrible shape and cant repel bacteria anymore. my doctor said something about frequent UTIs making the lining more "sticky" and therefore bacteria can stick to the lining better, and be really hard to get rid of. i'm not on elmiron because i'd rather that be my last choice. i already have annoying side effects from the other meds i take, and i'd like to not add to this list. but now i'm wondering. if Elmiron improves your lining, could it then help prevent UTIs? i cant go on getting sick often anymore!
    diagnosed IC Jan 2007 (though i feel i've had it mildly for years)
    frequent UTIs
    No frequency, just urgency and pain!


    tramadol 50mg twice a day. this stuff works good for nerve pain!!!! (update, i'm down to mostly one pill a day now!)

    Physical Therapy. if you have pelvic nerve pain or muscle pain, its worth a try. it helped me with the constant burning.

    TENS may help a little

    Cystoprotek might be helping as well. i'm getting better as time goes on and this could be why.

    fish oil, herbal teas, skullcap (might try passionflower for nerves) I'm not very diet sensitive.

    Went OFF elavil and nortryptiline (worked wonders, but didnt like the weight gain)

  • #2
    Hi.
    I seem to get more UTI's ever since getting IC also. I am now taking the Dmannose. Has your doctor ever considered putting you on a low dose antibiotic daily to prevent UTI's.
    I have severe stomach and intestinal motility issues so I cannot take antibitoics like that as they make me so much worse, but that is me.
    I know some who have to take a low dose anti-B daily just to prevent the UTI's. I am sorry, I can imagne how frustrating and painful this is for you.
    Jen

    Comment


    • #3
      i've considered asking about the daily antibioitic. but i tend to get yeast issues when i take antibioitics so i'm scared. most will give me yeast issues, though macrobid seems to be better for me than bactrim or cipro (hate that stuff!). Yeast definately makes vv problems so much worse

      anybody else take a daily antibiotic, and does it cause yeast?
      diagnosed IC Jan 2007 (though i feel i've had it mildly for years)
      frequent UTIs
      No frequency, just urgency and pain!


      tramadol 50mg twice a day. this stuff works good for nerve pain!!!! (update, i'm down to mostly one pill a day now!)

      Physical Therapy. if you have pelvic nerve pain or muscle pain, its worth a try. it helped me with the constant burning.

      TENS may help a little

      Cystoprotek might be helping as well. i'm getting better as time goes on and this could be why.

      fish oil, herbal teas, skullcap (might try passionflower for nerves) I'm not very diet sensitive.

      Went OFF elavil and nortryptiline (worked wonders, but didnt like the weight gain)

      Comment


      • #4
        Hi Nicole.
        They do say that the low dose antibiotics are less likely to give you a yeast issue since the dose is so low, but I guess it depends on you too,I mean if you are sensitive to getting yeast infections.
        I took macrobid for an infection a month or so ago and it did not bother me, but when I took a macrodantin a couple weeks ago, it messes my bowels up bad, I was all stopped up and could not go. That is weird because macrobid and macrodantin are supposedly the same med. I wonder why one bothered me and not the other.
        I have the liquid nitrofourontin here, but I am to scared to take it after what the macrodantin did to my digestive tract. The only other anti-B that I know sometimes helps when I have a UTI is cipro. It makes my bladder feel worse, but it knocks out the infection. I hate taking antibiotics. Did the dmannose use to prevent UTIs for you? When you get a UTI, are they always diagnosed by culture?
        I am weird this way because when I go to my doctor, their dipstick tests NEVER pick up my infections, only the culture does. See, me and my uro dont see eye to eye on the infection issue. He thinks that a true infection will also show elevated white blood cells in the urine, which is not true in my opinion. I had a culture done three weeks back and I knew I had a UTI brewing. The culture came back showing only 20,000 bacteria count and he said he believes it was a contaminated sample. ( Bull**** is what I thought) It was not contaminated. Anyhow, I went home after I had left the sample and just took a couple macrodantins(this is what messed up my tum). Well anyhow, that kicked the infection.
        Four days later the nurse called and told me about the 20,000 bacteria they found and said he insisted on doing a catheterized specimin before treating me since he thought is was contaminated. Well, since I had already taken the macrodantin, I felt fine, so I did not have to give the sample. I think it is stupid to cathererize as it is, there is always a bigger risk of inducing an infection that way. I do at home instills once a week and I am always so worried about infection.
        Anyhow, My urogyne is great, just that we do not see eye to eye on that issue. I am sorry you are dealing with this also. Hope you can get these UTI's to stop. A UTI on top of IC is just awful!!
        Jen

        Comment


        • #5
          i'd say 9 out of 10 times i can pick out an actual infection versus normal IC pain. Infections feel different. the pain is much more intense, and mainly happens after the pee comes out, verses before the pee comes out with IC. but the biggest clue is how the pee smells. infection pee smells aweful! and it comes out in little spurts and sometimes discolored. IC nver does that to me. but honestly, in the 40+ infections i've had in my life, i've only taken antibiotics for maybe 5 of them. i find that the infections go away in 2 days whether or not i'm on antibiotics. typically i use d-mannose or herbs and it goes away just as fast without the awful side effects. i just wish i had a really good (and cost effective) prevention plan. D-mannose is expensive but i feel like i have to take it all the time.
          diagnosed IC Jan 2007 (though i feel i've had it mildly for years)
          frequent UTIs
          No frequency, just urgency and pain!


          tramadol 50mg twice a day. this stuff works good for nerve pain!!!! (update, i'm down to mostly one pill a day now!)

          Physical Therapy. if you have pelvic nerve pain or muscle pain, its worth a try. it helped me with the constant burning.

          TENS may help a little

          Cystoprotek might be helping as well. i'm getting better as time goes on and this could be why.

          fish oil, herbal teas, skullcap (might try passionflower for nerves) I'm not very diet sensitive.

          Went OFF elavil and nortryptiline (worked wonders, but didnt like the weight gain)

          Comment


          • #6
            In addition to d-mannose maybe try echinacea.... that's supposed to help the body fight of infections. I heard about it from a friend on this site. I'm going to start trying that. I also get frequent UTI's. I get at least one a month. I hate calling the dr and getting more antibiotics. I'm really carefull and I still get them. I just started d-mannose and I hope it works! Good luck, I know how much Uti's suck. I got one last weekend. Feel better

            Rach
            ***Rachel***

            Dance like no one is watching
            Love like you've never been hurt
            Live today like it's your last

            Dxd with IC in June '06

            Comment


            • #7
              Hi Nicole and Rach.
              I sometimes have a hard time telling when I have a UTI or if it is a IC flare. I never get the burning while I pee or or after when I have an infection. I just have pain and burning all the time when I have a UTI, and also when my IC flares bad.
              There are times when I know I have a UTI, but there have also been times when I could swear I have one and the culture is normal, go figure.
              I have issues with taking antibiotics bacause they mess my digestive tract up something awful. They are what caused alot of my health issues I believe so I hate when I have to take them. I have never had an infection just go away though on it's own, they always get worse if I dont treat them.
              I am trying to figure out something else I could do to prevent them better. I mean I cannot possibly be any cleaner than I already am, that is for sure. I am very very careful when I do my instillations also. I was even wondering if my doctor could give me a liquid antibiotic to add to my instill meds versus taking a pill orally which has alot of the bad side effects.
              I just dropped off a pee sample now at the urogynes office as I think I am getting a UTI. This is insane, I dont get why I keep getting these infections. Something has got to give. I mean what is a person suppose to do, I cannot keep taking antibiotics every month or two.
              I have not tried echenasia(sp), but I am a little leary of taking immune boosters as I have a probable autoimmune disorder and I read that taking any type of immune booster would be bad as it would just give my body more amunition to attack me more.
              This is so aggravating. I also take D'mannose daily. Is this suppose to help prevent UTI's? I think I read that it only is effective against the e-coli bacteria though, not the other ones. Any other ideas on how to prevent these UTI's would be great, so if you think of any, please pass it on. Thanks.

              Jen

              Comment


              • #8
                A probiotic supplement

                There is a fairly new probiotic for urogenital health called FemDophilus. It consists of 2 strains of lactobacillus that were discovered and patented by Gregor Reid, PhD, of the U of Western Ontario. He sold the rights of manufacture to Jarrow and it is sold by online sites so you can search. Someone told me it is available at Whole Foods. It was mentioned in this month's issue of Prevention in an article called "Europe's Best-kept Health Secret".
                http://www.prevention.com/article/0,...7955-2,00.html

                They mention it as a help for Bacterial vaginosis.
                The insert has a very good description of the value of using this and many are using it and are happy with it.

                Probiotics are becoming mainstream and this article mentions some of the best. They are recommended for IBS symptoms, too, but FemDophilus is especially good for urogenital problems.

                Gregor Reid has many articles that have been published if you search. He is one of the top probiotic researchers and I have read the patent for FemD and it shows how extensively it was tested.

                Martha F
                Last edited by ICNDonna; 06-19-2007, 01:59 PM. Reason: Removed direct medical advice.

                Comment


                • #9
                  Hi Martha.
                  Thanks for that info. I am going to to whole foods today and will see if they have it. I take floragen 3 right now, it is suppose to help with the vaginal infections more so and to put the good bugs back in the gut. My urogyne on the other hand does not promote using probitoics, he said there are some that can cause trouble, especially the ones that are not really live bacteria, but dead.
                  I am now taking antibitoics for a UTI and I hate taking antibitoics as they are what messed up my GI tract 5 years ago and I I have never gotten over it, I have severe motility issues now. WHich probitoic for the gut is suppose to be a good one, or a reliable one? Thanks.
                  Jen

                  Comment


                  • #10
                    I have been advised to take probiotics by an MD for "gut" problems so feel comfortable doing so. The FemDophilus was recommended to me by a patient. In fact she was able to get off of antibiotics which she was taking long term for chronic bladder infections (had been diagnosed with IC like me and worked with Dr. Fugazzotto). We both feel well now.

                    As to good probiotics I think the ones listed at the end of the Prevention article would be considered good. I take 3 of them: Culturelle, FemDophilus, and Saccharomyces boulardii. I also take Megaflora which I found at a health food store and it has 20 billion units per capsule consisting of 14 different strains. Have taken one or two a day for over a year without a problem. The good ones often have to be refrigerated.

                    As you know supplements are not regulated by the FDA so there is no guarantee of their contents. I assume Prevention has done some investigating before recommending them. I think probiotics are going to be the wave of the future. Wish they could replace antibiotics, or antibiotics could be more targeted to the bladder for instance. I read about an Italian company since Jill interviewed an executive who was here attending an AUA meeting. The company is called Physion and they use something called EMDA (electromotive drug administation). They instill antibiotics into the bladder and then use a electrical charge through the abdomen that causes the antibiotic to go deeper into the bladder wall. They hoped to use it for UTI treatment and it sounded great to me. The FDA has not approved it but it was being tested by Dr. Payne at Stanford to deliver DMSO I believe. The concept is great but the FDA feels a drug (antibiotic) is changed when delivered this way. I don't know whether the company is still working on approval. It is approved in many European countries. At least with EMDA you are not getting the drug through your whole intestinal system as we are now.

                    Anyway, I think you should talk to some other MDs about using probiotics in your case, or even find a certified nutrional counsellor who could advise. I wanted to attack my bowel symptoms aggressively. I stopped eating wheat which helped and stopped some calcium qnd zinc supplements and that helped. You have to experiment with what works. I saw an alternative MD and he ordered a stool analysis (no other MD did any testing - just said I had IBS). Doctors Data in St. Charles, Ill does a stool analysis. They found I had some "bad" bacteria along with the good kinds we are supposed to have. Also I needed a digestive enzyme. It can show a yeast overgrowth also - it is very revealing and I don't know why gastroenterologists, at least, don't use it. A worry with long antibiotic use is Clostridium difficile. I was finally tested for that (overgrowth) and did have too much. No one suspected it since my symptoms were mild and I think the probiotics kept it under control. I took a week of Flagyl for it. It can be hard to treat and it might be worth asking to be tested for it. Look into Doctors Data.

                    Hope this helps.

                    Martha
                    Last edited by ICNDonna; 06-19-2007, 02:02 PM. Reason: Advertising

                    Comment


                    • #11
                      d-mannose helps keep the bladder lining clean from E-Coli, and possibly staph. around 80% of infections are E-Coli. I know its horribly frusterating. i do all the precautions too. its like in order to prevent these, i cant have one speck of bacteria on me! and we all know thats impossible!
                      diagnosed IC Jan 2007 (though i feel i've had it mildly for years)
                      frequent UTIs
                      No frequency, just urgency and pain!


                      tramadol 50mg twice a day. this stuff works good for nerve pain!!!! (update, i'm down to mostly one pill a day now!)

                      Physical Therapy. if you have pelvic nerve pain or muscle pain, its worth a try. it helped me with the constant burning.

                      TENS may help a little

                      Cystoprotek might be helping as well. i'm getting better as time goes on and this could be why.

                      fish oil, herbal teas, skullcap (might try passionflower for nerves) I'm not very diet sensitive.

                      Went OFF elavil and nortryptiline (worked wonders, but didnt like the weight gain)

                      Comment

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