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    #16
    Originally posted by paramoto View Post
    I did not mean to start controversy, and I have the utmost respect for KLD and GJ. KLD has helped me on many issues and difficulties over the years and I will always be thankful. To a lesser extent but no less important so has GJ.

    The reason I started the thread is because new companies and new brands (Manna, Theracyn) were out on the market and with them the possibility of new fomulations, coupled with the perception that Microcyn AH's availability was dwindling, the question of what to buy and where to buy the new product was opportune.

    Second, clinical trials. I agree that we may die before someone decides to push for one, but we have bought thousands of these expensive bottles, the fact that they work is not anecdotal if you ask anyone that uses it, but clinical trials would make me feel a lot better about instilling a bleachy substance twice a day. Having said that, antibiotics are anything but innocuous, so from the information that is available now, Microcyn is the best we got.

    Lastly, I have no issues with the long thread, just with new topics being bunched into it. Say somebody has a bad experience with MIcrocyn, I would never find out because the thread is unreadable. New topics, even if they are repeat topics should be left alone in a new thread in my humble opinion. We need more information that is easier to access about Microcyn. Period, fact. I also disagree with this being categorized as equipment or supplies. It is most definitively a care issue, as much as antibiotics, bowels, botox, bladder augmentation, megacolon and the like.

    At the end of the day, what we need to know is if this stuff is helping us or hurting us. Any information that moves us closer to finding that out should be available, easy to find and it only makes absolute sense to facilitate members contributions to the topic. The huge thread is looong, informative but not ideal for current issues. For the record, I never asked for the thread to be closed. My humble opinion is that if someone wants to make the long thread longer, be my guest, if someone wants to read it, be my guest. But if someone wants to contribute opening a new thread it makes no sense to lump it into the old one. I for one am always on the lookout for Microcyn/Puracyn contributions.

    Peace to all.
    Eloquent! Well said Paramoto. Hope your thoughtful explanation will change KLD's mind and she will reopen that thread.

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      #17
      Originally posted by ctoom91 View Post
      There's enough anecdotal evidence from users here to convince me that MAH is safe.If it's safe enough to spray into open wounds, in ears and around eyes,I'll take my chances instilling it in my bladder.Dr.Young doesn't seem to have a problem with it and gjnl is a medical professional (to set the record straight, I'm not a medical professional. I'm 35+ years post injury c6/7 complete. I've had a special interest in the bladder process since my injury and I have read voraciously on the topic - GJ) who is also sci and an MAH user,I trust their opinions.If we don't take matters into our own hands and wait around for the govt. or pharma to run a trial on what would be a low profit treatment,or wait for new abx or the next miracle this or that, most of us won't be around when and if something effective is approved.If you're healthy and able bodied you have all the time in the world,we don't.
      Just for the record, see my comment above.

      Comment


        #18
        Originally posted by nonoise View Post
        There appears to be a Microcyn clinical trial in progress: https://clinicaltrials.gov/ct2/show/NCT02001558
        Watch this thread.
        I think what is wanted is a clinical trial using Microcyn Technology as a bladder instillation to help prevent urinary tract infections.

        Microcyn Technology already had FDA approval as a Wound Cleanser. Those of us using Microcyn Technology as a bladder instillation are using it for off label purposes. Many health care professionals use FDA approved medications and devices off label everyday.

        https://www.drugs.com/history/microcyn.html

        Microcyn Approval History

        • FDA approved: Yes (First approved May 9th, 2005)
        • Brand name: Microcyn
        • Dosage form: Irrigation Solution
        • Company: Oculus Innovative Sciences, Inc.
        • Treatment for: Wound Cleansing

        The Microcyn-based family of products are generated through a unique, patented electrochemical treatment of dilute saltwater. A pH neutral solution of hypochlorous acid, and its sodium salt, hypochlorite, is generated. The hypochlorous acid in Microcyn, similar to the natural hypochlorous acid produced by the human body, preserves the Microcyn solution. Microcyn solution is used in the mechanical removal of debris and foreign materials from wound sites.

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          #19
          GJ, I found a vendor for Theracyn and ordered the wound care spray, but they shipped the hydrogel. Is there a difference?
          T6 complete (or so I think), SCI since September 21, 2003

          Comment


            #20
            Originally posted by paramoto View Post
            GJ, I found a vendor for Theracyn and ordered the wound care spray, but they shipped the hydrogel. Is there a difference?
            Hydrogel is going to be hard to instill since it is more viscous than the wound and skin care liquid. While I guess it is possible to use it. I wouldn't want to. I would want the company to refund and pay for return of the product or you could keep it and use it for various applications. I've read here on the forum that some folks use the hydrogel to lubricate a catheter.

            Comment


              #21
              Originally posted by gjnl View Post
              I am trying as much as humanly possible not to engage with Moderator KLD on this forum, really I am trying very hard. That said, I don't think her decision to close the https://www.carecure.net/forum/showt...ht=open+letter was reasonable or necessary, no one asked for that? All that was said was this thread is long and difficult to get through. Please KLD, keep that thread open, allow other questions about Microcyn Technology to be asked when our members come across that thread. No one asked anyone to close the Open Letter thread. Yes, the thread is large, yes it takes some time to get through, but so are many other threads on this site (just look at some of the political threads that really are a waste of time and space on this forum).When Wise answered Susanne's original premise, he was respectful and encouraging.

              Please reopen this thread for all to read, ask questions and benefit. Please moderate, don't censor.
              I agree wholeheartedly. I am convinced that Microcyn has changed my life for the better as UTIs, since I've begun using it over 2 years ago, are nothing but a lingering nightmare. We should be able to share our experiences with respect to any promising treatment, anecdotal or otherwise. To my knowledge, the FDA has no authority over these boards.

              r
              Rick Goldstein
              GO! Mobility Solutions
              facebook.com/goes.anywhere

              Comment


                #22
                Originally posted by goldnucs View Post
                I agree wholeheartedly. I am convinced that Microcyn has changed my life for the better as UTIs, since I've begun using it over 2 years ago, are nothing but a lingering nightmare. We should be able to share our experiences with respect to any promising treatment, anecdotal or otherwise. To my knowledge, the FDA has no authority over these boards.

                r
                what is your dose and frequency protocol??
                Bike-on.com rep
                John@bike-on.com
                c4/5 inc funtioning c6. 28 yrs post.
                sponsored handcycle racer

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                  #23
                  I use the gel as lube for introducer tip. but its the thick gel not spray gel.
                  Originally posted by gjnl View Post
                  Hydrogel is going to be hard to instill since it is more viscous than the wound and skin care liquid. While I guess it is possible to use it. I wouldn't want to. I would want the company to refund and pay for return of the product or you could keep it and use it for various applications. I've read here on the forum that some folks use the hydrogel to lubricate a catheter.
                  Bike-on.com rep
                  John@bike-on.com
                  c4/5 inc funtioning c6. 28 yrs post.
                  sponsored handcycle racer

                  Comment


                    #24
                    Which gel fuente, I am interested?


                    Originally posted by fuentejps View Post
                    I use the gel as lube for introducer tip. but its the thick gel not spray gel.
                    T6 complete (or so I think), SCI since September 21, 2003

                    Comment


                      #25
                      Originally posted by paramoto View Post
                      Which gel fuente, I am interested?
                      http://store.oculusis.com/home-page-...l-samples.html
                      Bike-on.com rep
                      John@bike-on.com
                      c4/5 inc funtioning c6. 28 yrs post.
                      sponsored handcycle racer

                      Comment


                        #26

                        Wow. Expensive. Is there a pet shop equal? Does anyone know?
                        T6 complete (or so I think), SCI since September 21, 2003

                        Comment


                          #27
                          Originally posted by paramoto View Post
                          Wow. Expensive. Is there a pet shop equal? Does anyone know?
                          last forever just takes a little bit.
                          Bike-on.com rep
                          John@bike-on.com
                          c4/5 inc funtioning c6. 28 yrs post.
                          sponsored handcycle racer

                          Comment


                            #28
                            Is this the pet equivalent hydrogel? https://www.amazon.com/MicrocynAH-Wo...rocyn+hydrogel

                            Comment


                              #29
                              Originally posted by Brent K View Post
                              Is this the pet equivalent hydrogel? https://www.amazon.com/MicrocynAH-Wo...rocyn+hydrogel
                              I don't know of an equivalent in the old MicrocynAH line or the new Theracyn line. That said, if my memory serves, the person who wrote about using Microcyn, MicrocynAH Hydrogel Sprays used a technique of spraying the less vicious hydrogel on a catheter they first lubricated with a jelly product or used the spray to moisten dry pre-lubricated (water activated) catheters.

                              Comment


                                #30
                                I vaguely remember the same technique but not 100% sure of what type of catheter they used, although the above makes sense.

                                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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