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    #46
    My usual urologist (not a neuro- urologist) was uncomfortable writing the gentamicin Rx and endorsing the instillation protocol. He referred me to a partner at the practice who is a neuro- urologist and who does my Botox every year. He was unconvinced as to its efficacy. He said he had a few patients but his experience left him unmoved. I didn't press him to ask him for the RX regardless of his experience.

    Both of the urologists mentioned instillation of, get this, Betadine. Has anybody heard of this or done it? The neuro- urologist said to put it in full strength and then let it run out. There was scant information on it available on the Internet. What I did see mentioned 50 mL of 2%. I'm leery about this. The Betadine that we buy comes in various strengths including 10%. That is quite different than 2%.

    Thoughts on the matter? I really was hoping they would write me the RX and let me do a three month trial.

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      #47
      My routine urologist, not a neuro- urologist, did not want to describe this regimen of treatment due to his lack of knowledge on the subject. He referred me to a practice associate who is a neuro- urologist and who does my Botox every fall. He also did not want to authorize it, saying that he had a few patients in the past on it, but did not see substantial benefit, though it was hardly a scientific study and was just anecdotal. I saw a third urologist at their practice who also was hesitant about it, but put me on hipprex, which I have been on for about five months and which did not prevent me from getting a klebsiella colonization with colony count over 100,000.

      I went to an infectious disease doctor who ran the few and limited (in patient numbers) available studies available. He said for my particular case, in which I take 7 (rarely 10) days of antibiotic probably about 3, perhaps 4 times per year, that he would not advise doing this protocol. He said the numbers in the studies were still low and the length of the studies, typically six months, was not long enough to determine, in his opinion, the important assertion that it does not result in systemic absorption to a significant level, considering this will be a lifelong regimen. He did say that long-term exposure to gentamicin, which belongs to the aminoglycosides family of antibiotic, does have some potential neurotoxic side effects on structures of the neuromuscular synaptic connections as well as the vestibular apparatus.

      He also said that long-term exposure to gentamicin in the bladder will have the effect of selecting out certain bacteria, while letting others thrive.

      I do have some minor issues with resistances to a few antibiotics, but at this point he said I am still well within the population that can utilize oral antibiotics when needed and that an ample selection is available when my colonization turns to infection.

      I would've liked to have tried it, but at this point I'm done trying to go doctor shopping for the authorization.

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        #48
        Originally posted by crags View Post
        My routine urologist, not a neuro- urologist, did not want to describe this regimen of treatment due to his lack of knowledge on the subject. He referred me to a practice associate who is a neuro- urologist and who does my Botox every fall. He also did not want to authorize it, saying that he had a few patients in the past on it, but did not see substantial benefit, though it was hardly a scientific study and was just anecdotal. I saw a third urologist at their practice who also was hesitant about it, but put me on hipprex, which I have been on for about five months and which did not prevent me from getting a klebsiella colonization with colony count over 100,000.

        I went to an infectious disease doctor who ran the few and limited (in patient numbers) available studies available. He said for my particular case, in which I take 7 (rarely 10) days of antibiotic probably about 3, perhaps 4 times per year, that he would not advise doing this protocol. He said the numbers in the studies were still low and the length of the studies, typically six months, was not long enough to determine, in his opinion, the important assertion that it does not result in systemic absorption to a significant level, considering this will be a lifelong regimen. He did say that long-term exposure to gentamicin, which belongs to the aminoglycosides family of antibiotic, does have some potential neurotoxic side effects on structures of the neuromuscular synaptic connections as well as the vestibular apparatus.

        He also said that long-term exposure to gentamicin in the bladder will have the effect of selecting out certain bacteria, while letting others thrive.

        I do have some minor issues with resistances to a few antibiotics, but at this point he said I am still well within the population that can utilize oral antibiotics when needed and that an ample selection is available when my colonization turns to infection.

        I would've liked to have tried it, but at this point I'm done trying to go doctor shopping for the authorization.
        Back in June, I shared a screenshot of some of the early comments in this thread with my urologist and asked whether she thought I should consider it.

        She replied: "I like intravesicle gent and use it. I don’t think you need it at this point. You overall do well without too many infections."

        Moral of the story: Keep looking?
        stephen@bike-on.com

        Comment


          #49
          Originally posted by stephen212 View Post
          Back in June, I shared a screenshot of some of the early comments in this thread with my urologist and asked whether she thought I should consider it.

          She replied: "I like intravesicle gent and use it. I don’t think you need it at this point. You overall do well without too many infections."

          Moral of the story: Keep looking?
          What did she consider "not too many infections"?

          Comment


            #50
            Originally posted by crags View Post
            What did she consider "not too many infections"?
            Sorry, I don't know the answer that question.
            stephen@bike-on.com

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              #51
              Originally posted by gjnl View Post
              Anyone using gentamicin to help prevent urinary tract infections have a supra pubic catheter to manage their bladders? Seems the protocol in these studies and trials is to instill diluted gentamicin into the bladder after an intermittent catheterization and leave it in until the next catheterization. If you use a supra pubic catheter, you can clamp or plug the catheter to hold the mixture in the bladder for a while, but it would be impractical and according to our SCI nurses, harmful to plug the catheter for long periods of time. Has anyone seen any information on the minimum amount of time gentamicin should remain in the bladder and still help prevent infections?
              bump

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                #52
                Apparently gentamicin is on back order and we can't get it
                2010 SCINet Clinical Trial Support Squad Member
                Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

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                  #53
                  Originally posted by WPDaggy View Post
                  Apparently gentamicin is on back order and we can't get it
                  I've used Neosporin G.U. (neomycin/polymyxin B) and get the same results. If you are able to get it, can be good to switch up sometimes.

                  Here's some info on both from New Mobility article:
                  https://www.newmobility.com/2015/12/...ant-solutions/

                  Good luck. Mystery to me why they can't keep this stuff in stock.

                  Comment


                    #54
                    I rotate with tobramycin and it has been pretty steadily available. The usual caveats about if possible mix it yourself bc its *expensive* compounded apply.


                    (edit: spelling)

                    Comment


                      #55
                      Thanks guys how do you install the Neosporin 60CCS
                      2010 SCINet Clinical Trial Support Squad Member
                      Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

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                        #56
                        Will the Neosporin stay stable for 2 weeks after it's mWill the Neosporin stay stable for the 2 weeks after it's mixed
                        2010 SCINet Clinical Trial Support Squad Member
                        Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

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                          #57
                          I mix myself and do 2 - 1ml Ampules in 1000cc's of saline.
                          I use a 3ml syringe to draw 'neomycin/polymyxin B' out of ampule.
                          I draw 60cc's into a syringe after putting lid on and shaking mixture. I keep antibiotic refrigerated before and after mixing. After filling 60 cc syringe with solution I warm to approximate room temperature.

                          That size batch will last me a good 15 days.
                          I buy a box of 10 ampules so it is about a three month supply.

                          https://mms.mckesson.com/product/785...ls-39822120102


                          annnev: appreciate the idea of tobramycin rotation.

                          "I rotate with tobramycin and it has been pretty steadily available."
                          Last edited by ChesBay; 7 Mar 2020, 1:49 PM. Reason: ETA: content

                          Comment


                            #58
                            Recommend letting the amount of solution you are instilling come to room temperature before actually instilling. Ice cold solution into your bladder can cause pretty significant bladder spasm, and even AD for some.

                            (KLD)
                            The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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                              #59
                              Originally posted by SCI-Nurse View Post
                              Recommend letting the amount of solution you are instilling come to room temperature before actually instilling. Ice cold solution into your bladder can cause pretty significant bladder spasm, and even AD for some.

                              (KLD)
                              Thanks KLD I it did occur to me to mention bringing solution to approximate room temperature after posting.I am going to edit post to add.

                              Comment


                                #60
                                Thanks a lot I really appreciate it
                                Originally posted by ChesBay View Post
                                I mix myself and do 2 - 1ml Ampules in 1000cc's of saline.
                                I use a 3ml syringe to draw 'neomycin/polymyxin B' out of ampule.
                                I draw 60cc's into a syringe after putting lid on and shaking mixture. I keep antibiotic refrigerated before and after mixing. After filling 60 cc syringe with solution I warm to approximate room temperature.

                                That size batch will last me a good 15 days.
                                I buy a box of 10 ampules so it is about a three month supply.

                                https://mms.mckesson.com/product/785...ls-39822120102


                                annnev: appreciate the idea of tobramycin rotation.

                                "I rotate with tobramycin and it has been pretty steadily available."
                                2010 SCINet Clinical Trial Support Squad Member
                                Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

                                Comment

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