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  • Two urgent urology questions.

    There is a vaccine that is suppose to out that is a cure for E. coli related bladder infections. In their description it talks about mainly able bodied women. Would it work for us SCI with chronic colonization??

    What’s the percentage rate of UTIs after bladder removal or Cystectomy? What’s the best Cystectomy procedure to avoid more UTIs? IIeal conduit??

    I cant do intermediate caths, so went to indwelling. Had infections from then, tried SP tube and that was worse. So indwelling for years and all these infections and Ecoli is the worst right now. I don’t get the papers from my urine cultures but my latest test they test 6 Antibiotics and I’m resistant to all of them.

    What else can I do? I’m a 39yo male have my 10 years daughter who I can’t leave anytime soon.
    Mark 9:23 - All things are possible for those who believe.

  • #2
    dewie do you know what pathogen you are currently infected with? Sorry to ask but do you know if you are you infected or colonzied? I also wonder if there are any studies that summarize the infection rates of the various Urological solutions (SP, IC, Condom, indwelling etc). Have you tried helping the Anti Biotics fight the infection(s) with MicrocynAH instillations?

    Comment


    • #3
      Thanks Crispy. The bug that has been coming again and again is Ecoli. And I’ve been colonized. I’ve been using Vetercyn since 2011 ish and that helped a even had a few years with one infection a year. Then out of the blue ecoli infections where running rampant and can’t dial them back. DMannose is just for ecoli and doesn’t seem to help. I’m just at a lose. I’ve had 3 infections since December.

      I pray this ecoli vaccine is true. It’s being used in the US and testing in Canada.
      Mark 9:23 - All things are possible for those who believe.

      Comment


      • #4
        Originally posted by dewie27 View Post
        Thanks Crispy. The bug that has been coming again and again is Ecoli. And I’ve been colonized. I’ve been using Vetercyn since 2011 ish and that helped a even had a few years with one infection a year. Then out of the blue ecoli infections where running rampant and can’t dial them back. DMannose is just for ecoli and doesn’t seem to help. I’m just at a lose. I’ve had 3 infections since December.

        I pray this ecoli vaccine is true. It’s being used in the US and testing in Canada.
        dewie, you definitely need to work with an Infectious Disease doc. Hopefully you've got one? Would it be simple for you to post your recent culture? Did you try following the microdox instructions to clear the infection?

        Comment


        • #5
          I would echo the post above. An infectious disease physician is in line for the issues that you are describing. I would also encourage you to get a copy of any lab work that you have done. It just helps if you have to see someone different for some reason and also keeps you informed about what is happening with your body.
          I am not surprised that you are colonized with something - you have an indwelling catheter in place. Are you symptomatic with these colonizations? Fever? Chills? Body Aches? Cruddy looking urine? I would keep my eye on what is colonizing,but if you have no symptoms, the thought is not to treat.

          ckf
          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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          • #6
            I’m just working on creating a online account to access my lab reports. It might take up to 10 days but when I get approved I’ll attach the lab results.

            yeah I only ever take a antibiotic is when I’m symptomatic like chills and sweets and vomiting. Then I’m left no choice.

            I saw a infectious disease Dr June 2009 and told me nothing I all ready didn’t know. He was hopefully my new Urosheild cath attachment was going to be the wonder device that changes my life but hasn’t worked that way yet.

            No I haven’t tried Microdox, is that that antibiotic you mix in water and drink when your starting to get sick?
            Mark 9:23 - All things are possible for those who believe.

            Comment


            • #7
              dewie, yes an ID doc isnt going to be much good at urology. You need an ID doc for antib biotic recommendations especially regarding resistance issues. You might have to shop around...there are good and not so good docs out there or sometimes you just need to find someone you 'click' with.

              If you search for microdox you'll find it is a solution that you instill directly into the bladder but i don't know of many here on CareCure that have succeeded in resolving a UTI but the microdox folks do suggest you can (just take a look at the instructions). It didn't work for me but i get AD and have to dilute the solution so not sure i'm a candidate. I do think it helped me manage my UTi symptoms however while i wait for a culture etc.

              Comment


              • #8
                Microdox solution is not available in the USA. It is essentially the same as Microcyn (Microdacyn Super Oxidised Solution), which is discussed at length on our forums. It is used for UTI prevention, not treatment.

                https://www.paralogic.com.au/assets/...icrodox%20.pdf

                Don't confuse it with Microdox-LBX Capsules which is also not available in the USA, but is used for certain types of intestinal infections.

                An e. coli vaccine is being used in a clinical trial currently, but has not been approved for use, nor have the results of the clinical trial been published yet.

                (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.

                Comment


                • #9
                  Originally posted by SCI-Nurse View Post
                  Microdox solution is not available in the USA. It is essentially the same as Microcyn (Microdacyn Super Oxidised Solution), which is discussed at length on our forums. It is used for UTI prevention, not treatment.

                  https://www.paralogic.com.au/assets/...icrodox%20.pdf

                  Don't confuse it with Microdox-LBX Capsules which is also not available in the USA, but is used for certain types of intestinal infections.

                  An e. coli vaccine is being used in a clinical trial currently, but has not been approved for use, nor have the results of the clinical trial been published yet.

                  (KLD)
                  For what it's worth the microdox instructions might be misleading but they DO suggest 'Treatment' and not just prevention. I have had success treating one pathogen but it could have been conicidence, perhaps my immune system did the job. My most recent pathogen (Pseudomonas) did not clear up but like i say i have to dilute the solution so i'm not the best case study...
                  There are a couple other folks that, like me had success eliminating a UTi while using this solution.

                  A couple lines from the link/Microdox web site...
                  "For the Treatment & Prevention of Urinary Tract Infections"
                  "In the case of symptomatic UTI follow the directions as above being sure to repeat this application twice daily for 5 days'

                  And yes, i think GJNL compared the micordox ingredients to some of the similar products availabe in the US (MicrocynAH for example) and the ingredients were essentially the same?

                  Comment


                  • #10
                    Originally posted by crispy1981 View Post

                    For what it's worth the microdox instructions might be misleading but they DO suggest 'Treatment' and not just prevention. I have had success treating one pathogen but it could have been conicidence, perhaps my immune system did the job. My most recent pathogen (Pseudomonas) did not clear up but like i say i have to dilute the solution so i'm not the best case study...
                    There are a couple other folks that, like me had success eliminating a UTi while using this solution.

                    A couple lines from the link/Microdox web site...
                    "For the Treatment & Prevention of Urinary Tract Infections"
                    "In the case of symptomatic UTI follow the directions as above being sure to repeat this application twice daily for 5 days'
                    And yes, i think GJNL compared the micordox ingredients to some of the similar products availabe in the US (MicrocynAH for example) and the ingredients were essentially the same?

                    sorry, tried to delete this...it's a duplicate.

                    Comment


                    • #11
                      I’m still waiting to get online approval to get my lab results so thanks for hanging in with me.

                      So Microdox is the same thing as VetericynAH that I’m currently using? The Vetericyn has worked pretty well except for Ecoli. And I was looking where to buy Microdox and just found Australia websites.

                      My Dr here in Canada said that UroVaxom the vaccine for Ecoli was approved in Europe and in USA but not in Canada. It looks promising. Even say they had successful test with SCI patients.

                      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6469220/
                      Mark 9:23 - All things are possible for those who believe.

                      Comment


                      • #12
                        Thanks for sharing the info on UroVaxom. Very interesting.

                        My Dad has also had a few EColi ESBL UTIs this year. They were resistant to most of the routine antibiotics, but they were subsceptible to fosfomycin. Dewie27, has your doctor been checking this antibiotic to see if the bug is susceptible? It is a very old antibiotic, but because it is rarely used, many of these resistant bugs aren't resistant to it. The doctor has to write on the prescription to check for the susceptibility to this antibiotic when you submit your urine sample.

                        Comment


                        • #13
                          Originally posted by dewie27 View Post
                          I’m still waiting to get online approval to get my lab results so thanks for hanging in with me.

                          So Microdox is the same thing as VetericynAH that I’m currently using? The Vetericyn has worked pretty well except for Ecoli. And I was looking where to buy Microdox and just found Australia websites.

                          My Dr here in Canada said that UroVaxom the vaccine for Ecoli was approved in Europe and in USA but not in Canada. It looks promising. Even say they had successful test with SCI patients.

                          https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6469220/
                          Yes, Dewie the Microdox products that are not available in the US are very similar to the Microcyn products that ARE available in the US. See this post and search for the phrase "I contacted" and you'll see the answer.

                          But i personally don't know if very many have tried the Microdox instructions to treat a UTi yet (i asked and no one responded) which surprises me given it would not be hard to do and if it works you've avoided using one of your limited anti biotic therapies.

                          I'm equally surprised that there is very little info/discussion on CC about the vaccine you discovered! There is one post here however and it appears to have worked well for one individual.
                          Last edited by crispy1981; 05-26-2020, 12:22 PM.

                          Comment


                          • #14
                            The saga continues and it doesn’t make any sense to me or my Dr.

                            First of all I’ll ask my Urologist about Microdox and see what he thinks. And I’ve never heard of Fosfomycin I’ll mention that to my Dr as well thank you!! The UroVaxom post from a few years ago, the member doesn’t say if the Vaccines worked long term or not I did PM them and pray they have good news about it.

                            I finally got set up to see my lab results and it doesn’t tell me anything!! Just like protein levels, PH, color of urine, Electrolytes level. NOTHING about what antibiotic worked.

                            It’s always been Ecoli for me these last 3 years. So two weeks ago I sent in a sample and was a 14 day run of Sulfatrim 2x a day. I made it to day 13 and my morning bed bag was full of sediment. That night I had chills and was puking all night. Talked to my Dr and she looked back and said the lab results said Ampicillin 500mg 4x a day and it was sensitive to Ecoli. And I’ve NEVER had Ampicillin before in my life! So I submitted another urine sample and with in a week the result came back and I’m now RESISTANT to Ampicillin!!! Like WTF, my Dr is completely baffled like me. So tonight she started me on Amoxi-Clav 500mg 3 times a day.

                            I swear the Vetercyn and Microcyn flushes, plus they natural stuff D Mannose and Crannberry and Akebia Moist Heat has made my Ecoli into a super resistant SOB.

                            I wish I could post my lab results. I’ll ask the Goverment how I can access the full result. It’s BS.

                            My Urologist wants me to start a low dose Antibiotic and rotate every 30days which I don’t know how I fell about that. And I’m getting a second Opinion from another Urologist I was just referred too. But the Cystectomy is looking like my only option. If it works it would be worth it but who knows why it works for some and not others.

                            thanks for the help guys.
                            Mark 9:23 - All things are possible for those who believe.

                            Comment


                            • #15
                              Bacteria loves sugar!

                              I was having UTI after UTI about two years ago.. Found out I had diabetes.. Once I got my sugar under control the UTIS stopped..Something to consider..

                              D-mannose is a simple sugar found in many fruits. It is related to glucose. It also occurs naturally in some cells in the human body.

                              D-mannose supplements should be used with caution if you have diabetes. It may make it harder to control your blood sugar.

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