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  • Microcyn Bladder Treatment (An Open Letter to Dr. Young)

    An Open Letter to Dr. Young:

    Hello Dr. Young,

    In this letter I would like to address the issue of initiating clinical trials with electrolyzed salt water, or super-oxidized water, to test its efficacy in preventing and even eliminating UTI’s in people who self-catheterize.

    I have been visiting this forum for about two years now, on behalf of my husband, who began self-catheterizing in March 2008, due to obstruction of the urethra from years of BPH, as well as neurogenic bladder from years of chronic retention. Although my husband is not a SCI patient, I came to this forum because it has the most information on self-catheterizing—more than any site on the web I have visited. We have been able to solve many problems my husband was encountering, just by reading how others on this forum had solved the same problems. For this we are deeply grateful.

    But there was one problem that seemed insurmountable—recurring UTI’s. My husband was getting an infection about every six to eight weeks, no matter how many improvements we made in his sterile procedure, etc. We followed all the advice we could get, and nothing seemed to work. His urologist always prescribed fluoroquinolones, which worked beautifully at first, but over time the microbes seemed to be getting used to this class of antibiotics, and so he seemed to be colonized most of the time. We tried other classes of antibiotics, but they worked no better. The problem became critical when the antibiotics started attacking the cartilage in his body—he is an older man, 72 years of age. He had always been active, going to the gym and walking every day, but he actually ended up on crutches with his feet so swollen he couldn’t walk into the bathroom. After doing much research I discovered that although the fluoroquinolones do the best job at getting rid of the UTI’s (at least for a time) they are chrondrotoxic, among other things. I refer you to an article online, “Fluoroquinolones are just plain toxic”, http://www.injuryboard.com/printfriendly.aspx?id=252964 . Of course, fluroquinoones are not the only antibiotics with damaging side-effects. We have experienced real trouble with all of them, when used repeatedly. But Cipro is particularly notorious, causing tendon rupture, cartilage damage, arthritis, just basically interfering with DNA synthesis. Of course you know that the FDA was compelled to put out a black-box warning on Cipro, which is pretty serious, for a black box warning is the strongest possible warning to the public. But, as I said, Cipro is not alone in being cytotoxic when used repeatedly.

    When my husband ended up on crutches, it looked like we had hit an impasse we just could not get past—after all our efforts to master the catheterization technique in hopes of a good quality of life. But nobody was talking about any alternatives that were truly effective—something we could really count on to solve the problem. That’s when we came across Bob Clark’s posts about this matter. Bob clearly articulated that the problem stems from the colonization of the urethra, particularly the distal urethra. It would seem that the urethra of those who self-catheterize is like an open wound as far as microbes are concerned. It offers a perfect place for colonization and eventual infection. Why is this, since everyone’s distal urethra is probably colonized? Because people who self-catheterize cannot rinse out the urethra when urinating, since they do not urinate normally. In an article called “Infections of the Urogenital Tract and STD’s” ( http://faculty.ivytech.edu/~twmurphy/txt_202/Urog_inf.html ), the author states, “The flow of urine and mucous through the urinary tract helps eliminate bacteria that have invaded. The distal urethra is colonized by several bacterial species in both the male and female but bacterial numbers are reduced by the washing action of the urine during urination.” Thus the whole problem in a nutshell. And worse yet, the catheter tends to push those unchallenged microbes up into the bladder where they can further colonize and infect.

    So we tried Bob’s method, using hydrogen peroxide to rinse the urethra prior to each catheterization. At first it seemed to work beautifully, but there was one catch for my husband. He has a very tight passage through the membranous urethra, just before the external sphincter, and every now and then, if he isn’t careful enough, it will get nicked and bleed a little. With the use of hydrogen peroxide, the nicks weren’t healing up properly. We attributed this to interference with fibroblast formation. So we stopped using the hydrogen peroxide and switched to saline solution. This seemed to help a lot, and he got four months without having to use antibiotics, but he was colonized the whole time, so the saline solution was to weak to really do the job. And using antibiotics only every four months was still not acceptable, health wise.

    That’s when we found out about super-oxidized water, sometimes called EOW—electrolyzed oxidizing water. This is actually electrolyzed salt water, and the commercial name is Microcyn. I refer you to an article, http://www.rexresearch.com/elexwater/elexwater.htm , which gives a perspective on some of the uses EOW can be put to . It’s really quite remarkable. So we ordered a lot of Microcyn, and even though it was too expensive for our budget (Veterans Pension) we didn’t care. Going into debt is nothing compared to what we were facing without the Microcyn. Well, to make a long story a little less lengthy, it has been working beautifully. My husband has not had a UTI for seven months, and he is definitely not colonized. We are using the technique outlined by Bob in his posts, but we irrigate up a little further than he does—getting up as close as possible to the external sphincter, without penetrating it. We use the little irrigation apparatus Bob described on this forum.

    My question is this: Why haven’t clinical trials been initiated to test the effectiveness of EOW in people who self-catheterize? Surely you are aware of the potential it has to eliminate these dangerous infections and the hazards of repeated antibiotic use. Why was Bob’s heartfelt plea to initiate clinical trials ignored? Why have his important ideas been marginalized? I speak from experience here—following Bob’s suggestions to help us find the right way for my husband clearly saved his life, and it could also save the lives of many others. This is a very urgent matter. When you look right at the problem, it’s pretty foolish to teach a person to self-cath, knowing that he/she will be at risk for recurring UTI’s, no matter how careful they are—without first teaching them to eliminate the colonization within the urethra. It’s like a person leaving the front door unlocked, and then when thieves come in to rob the place, shoot them. This may work—they may succeed in killing the thieves, but the collateral damage will be significant. And all they had to do was lock the front door in the first place. It’s a no-brainer.

    Consider the syndrome that has occurred so many times over the course of medical history. To quote a passage form a book entitled Pushing Ultimates: “Back before Pasteur, circa 1785, when hundreds of women were dying from childbirth infection, Alexander Gordon noticed that the cleaner things were in the birthing room the less a women giving birth was susceptible to infection. Though he attempted to spread the word about the need for cleanliness, he was scorned and ignored. Seventy years later Ignaz Semmelweis, aware that hundreds of women were still dying of what was called childbirth fever, took extensive empirical procedures to test the cleanliness element in birthing rooms, especially having doctors wash their hands just before delivering a baby. Yet though Semmelweis did his best, even using empirical evidence to prove cleanliness was essential, he was rejected, ridiculed and ignored, thus thousands of women continued to die because of such arrogant self-willed ignorance.”

    Please, Dr. Young, do not allow yourself to be guilty of “self-willed” ignorance. Ignoring this crucial prophylactic step in self-catheterization is actually a violation of the Hippocratic oath, for harm is being done through ignorance and oversight.

    I have contacted the representative at Oculus IS, and she says they are ready and waiting to cooperate with clinical trials. Significantly, they have also developed Microcyn in gel form, and this could possibly be used as a lubricant for the self-cathing process, in lieu of or in addition to irrigation of the urethra with Microcyn liquid.

    Well, that’s pretty much all I have to say at this time.

    May you grasp the sincerity of my intent.

    Susanne Lewis
    I'm back on Facebook again--up and running!

    http://www.facebook.com/profile.php?...00000532232573

  • #2
    Leila,

    Thank you very much for your convincing and passionate letter. There are two ways that you can go about getting clinical trials. The first is to convince a urologist in a well-respected academic center to organize a clinical trial. That urologist has to convince his or her colleagues to do a multicenter trial, find a supplier of the superoxidized water, and a funding source (like NIH) for the clinical trial. The second option is to get a company interested in taking on the product (in hopes of gaining a profit) and having that company organize and pay for the trial.

    So, my question to you is why Microcyn is not taking the second option and whether people that have been using superoxidized water are being taken care of by urologists who are sufficiently impressed by what is happening to organize a clinical trial. Having a body of people who provide positive testimonials may help Microcyn or urologists to initiate a clinical trial.

    Wise.





    Originally posted by Leila View Post
    An Open Letter to Dr. Young:

    Hello Dr. Young,

    In this letter I would like to address the issue of initiating clinical trials with electrolyzed salt water, or super-oxidized water, to test its efficacy in preventing and even eliminating UTI’s in people who self-catheterize.

    I have been visiting this forum for about two years now, on behalf of my husband, who began self-catheterizing in March 2008, due to obstruction of the urethra from years of BPH, as well as neurogenic bladder from years of chronic retention. Although my husband is not a SCI patient, I came to this forum because it has the most information on self-catheterizing—more than any site on the web I have visited. We have been able to solve many problems my husband was encountering, just by reading how others on this forum had solved the same problems. For this we are deeply grateful.

    But there was one problem that seemed insurmountable—recurring UTI’s. My husband was getting an infection about every six to eight weeks, no matter how many improvements we made in his sterile procedure, etc. We followed all the advice we could get, and nothing seemed to work. His urologist always prescribed fluoroquinolones, which worked beautifully at first, but over time the microbes seemed to be getting used to this class of antibiotics, and so he seemed to be colonized most of the time. We tried other classes of antibiotics, but they worked no better. The problem became critical when the antibiotics started attacking the cartilage in his body—he is an older man, 72 years of age. He had always been active, going to the gym and walking every day, but he actually ended up on crutches with his feet so swollen he couldn’t walk into the bathroom. After doing much research I discovered that although the fluoroquinolones do the best job at getting rid of the UTI’s (at least for a time) they are chrondrotoxic, among other things. I refer you to an article online, “Fluoroquinolones are just plain toxic”, http://www.injuryboard.com/printfriendly.aspx?id=252964 . Of course, fluroquinoones are not the only antibiotics with damaging side-effects. We have experienced real trouble with all of them, when used repeatedly. But Cipro is particularly notorious, causing tendon rupture, cartilage damage, arthritis, just basically interfering with DNA synthesis. Of course you know that the FDA was compelled to put out a black-box warning on Cipro, which is pretty serious, for a black box warning is the strongest possible warning to the public. But, as I said, Cipro is not alone in being cytotoxic when used repeatedly.

    When my husband ended up on crutches, it looked like we had hit an impasse we just could not get past—after all our efforts to master the catheterization technique in hopes of a good quality of life. But nobody was talking about any alternatives that were truly effective—something we could really count on to solve the problem. That’s when we came across Bob Clark’s posts about this matter. Bob clearly articulated that the problem stems from the colonization of the urethra, particularly the distal urethra. It would seem that the urethra of those who self-catheterize is like an open wound as far as microbes are concerned. It offers a perfect place for colonization and eventual infection. Why is this, since everyone’s distal urethra is probably colonized? Because people who self-catheterize cannot rinse out the urethra when urinating, since they do not urinate normally. In an article called “Infections of the Urogenital Tract and STD’s” ( http://faculty.ivytech.edu/~twmurphy/txt_202/Urog_inf.html ), the author states, “The flow of urine and mucous through the urinary tract helps eliminate bacteria that have invaded. The distal urethra is colonized by several bacterial species in both the male and female but bacterial numbers are reduced by the washing action of the urine during urination.” Thus the whole problem in a nutshell. And worse yet, the catheter tends to push those unchallenged microbes up into the bladder where they can further colonize and infect.

    So we tried Bob’s method, using hydrogen peroxide to rinse the urethra prior to each catheterization. At first it seemed to work beautifully, but there was one catch for my husband. He has a very tight passage through the membranous urethra, just before the external sphincter, and every now and then, if he isn’t careful enough, it will get nicked and bleed a little. With the use of hydrogen peroxide, the nicks weren’t healing up properly. We attributed this to interference with fibroblast formation. So we stopped using the hydrogen peroxide and switched to saline solution. This seemed to help a lot, and he got four months without having to use antibiotics, but he was colonized the whole time, so the saline solution was to weak to really do the job. And using antibiotics only every four months was still not acceptable, health wise.

    That’s when we found out about super-oxidized water, sometimes called EOW—electrolyzed oxidizing water. This is actually electrolyzed salt water, and the commercial name is Microcyn. I refer you to an article, http://www.rexresearch.com/elexwater/elexwater.htm , which gives a perspective on some of the uses EOW can be put to . It’s really quite remarkable. So we ordered a lot of Microcyn, and even though it was too expensive for our budget (Veterans Pension) we didn’t care. Going into debt is nothing compared to what we were facing without the Microcyn. Well, to make a long story a little less lengthy, it has been working beautifully. My husband has not had a UTI for seven months, and he is definitely not colonized. We are using the technique outlined by Bob in his posts, but we irrigate up a little further than he does—getting up as close as possible to the external sphincter, without penetrating it. We use the little irrigation apparatus Bob described on this forum.

    My question is this: Why haven’t clinical trials been initiated to test the effectiveness of EOW in people who self-catheterize? Surely you are aware of the potential it has to eliminate these dangerous infections and the hazards of repeated antibiotic use. Why was Bob’s heartfelt plea to initiate clinical trials ignored? Why have his important ideas been marginalized? I speak from experience here—following Bob’s suggestions to help us find the right way for my husband clearly saved his life, and it could also save the lives of many others. This is a very urgent matter. When you look right at the problem, it’s pretty foolish to teach a person to self-cath, knowing that he/she will be at risk for recurring UTI’s, no matter how careful they are—without first teaching them to eliminate the colonization within the urethra. It’s like a person leaving the front door unlocked, and then when thieves come in to rob the place, shoot them. This may work—they may succeed in killing the thieves, but the collateral damage will be significant. And all they had to do was lock the front door in the first place. It’s a no-brainer.

    Consider the syndrome that has occurred so many times over the course of medical history. To quote a passage form a book entitled Pushing Ultimates: “Back before Pasteur, circa 1785, when hundreds of women were dying from childbirth infection, Alexander Gordon noticed that the cleaner things were in the birthing room the less a women giving birth was susceptible to infection. Though he attempted to spread the word about the need for cleanliness, he was scorned and ignored. Seventy years later Ignaz Semmelweis, aware that hundreds of women were still dying of what was called childbirth fever, took extensive empirical procedures to test the cleanliness element in birthing rooms, especially having doctors wash their hands just before delivering a baby. Yet though Semmelweis did his best, even using empirical evidence to prove cleanliness was essential, he was rejected, ridiculed and ignored, thus thousands of women continued to die because of such arrogant self-willed ignorance.”

    Please, Dr. Young, do not allow yourself to be guilty of “self-willed” ignorance. Ignoring this crucial prophylactic step in self-catheterization is actually a violation of the Hippocratic oath, for harm is being done through ignorance and oversight.

    I have contacted the representative at Oculus IS, and she says they are ready and waiting to cooperate with clinical trials. Significantly, they have also developed Microcyn in gel form, and this could possibly be used as a lubricant for the self-cathing process, in lieu of or in addition to irrigation of the urethra with Microcyn liquid.

    Well, that’s pretty much all I have to say at this time.

    May you grasp the sincerity of my intent.

    Susanne Lewis

    Comment


    • #3
      Thank you, Dr. Young, for your prompt reply. It is disheatening to realize how much red tape is involved in such an endeavor. But it could be accomplished if things came together right. I am contacting Oculus to see if they can offer more advise. If not, things are just going to remain stalled, probably because not enough people have tried the Microcyn rinsing of the urethra prior to catheterization. It will take time for this idea to get around so more and more people are willing to try it and then come forth with their success stories.

      Unfortunately, urologists are a conservative lot indeed, at least from where we stand. They just want to go with the standard procedure, and not take even the slightest risk to find something better. Actually, using Microcyn in the urethra is completely safe. It is as gentle as water, but as strong as bleach. There are no microbes that can stand up to it, nor can they develop resistance to it. You see, that's the problem with putting Chlorhexidine in the self-cathing lubricant--the microbes can and are developing resistance to it, and when they do this they also become more resistant to antibiotics. So it's a kind of time-bomb.

      Microcyn seems to obtain its anti-microbial strength from the combination of oxygen with hypochlorous acid, and this combination is formed when the saline is electrically separated at the cathode and anode, and then recombined to form a third solution. Some institutions are starting to buy the really large apparatus (as big as two hot water heaters) and use the EOW to cleanse rooms and hallways and bathrooms. If this were done in hospitals, nosocomial infections would become a thing of the past.

      But all this is going to take time. I'll do what I can as time permits.

      Thanks again,

      Susanne Lewis (screen name Leila)
      I'm back on Facebook again--up and running!

      http://www.facebook.com/profile.php?...00000532232573

      Comment


      • #4
        I've detailed how this product saved my life. I went from over 100 uti's in three years to one or two in the years I've been using this product. Microcyn is not available to the best of my knowledge but it's veterinary equilvant, Vetericyn is.

        Based on my personal testimonials, several people I know now use this product successfully.

        Please note that anecdotally, we've discovered that one must be extremely careful in using Vetericyn as a bladder flush. It certainly cleans out the bladder microbes but seems to quickly migrate into the gut and seems to kill the beneficial flora in the intestines. Translation: we kick the bladder infection but end up with diarrhea if we leave it in the bladder too long.
        My blog: Living Life at Butt Level

        Ignite Phoenix #9 - Wheelchairs and Wisdom: Living Life at Butt Level

        "I will not die an unlived life. I will not live in fear of falling or catching fire. I choose to inhabit my days, to allow my living to open me, to make me less afraid, more accessible, to loosen my heart until it becomes a wing, a torch, a promise. I choose to risk my significance; to live so that which comes to me as seed goes to the next as blossom and that which comes to me as blossom, goes on as fruit."

        Dawna Markova Author of Open Mind.

        Comment


        • #5
          Originally posted by JenJen View Post
          I've detailed how this product saved my life. I went from over 100 uti's in three years to one or two in the years I've been using this product. Microcyn is not available to the best of my knowledge but it's veterinary equilvant, Vetericyn is.

          Based on my personal testimonials, several people I know now use this product successfully.

          Please note that anecdotally, we've discovered that one must be extremely careful in using Vetericyn as a bladder flush. It certainly cleans out the bladder microbes but seems to quickly migrate into the gut and seems to kill the beneficial flora in the intestines. Translation: we kick the bladder infection but end up with diarrhea if we leave it in the bladder too long.
          Jenjen,

          That is interesting. How does it get into the gut?

          Wise.

          Comment


          • #6
            I would like to know more about the methods for flushing the bladder. how is it done?

            Comment


            • #7
              Leila, Thank you very much for taking the time to type all this up. Bob has been spreading the wisdom for years, lol. Like MOST other things health/equipment and supplies-wise, the REALLY useful items will probably NEVER be widespread.

              I'm gonna try to find the vet equivalent Jen, if it's readily available, I'm getting it.


              Damn they are proud of it, AMazon has it also.

              FYI varies to approximately 40 bucks for 16 oz either gel or liquid


              how do u use it Jen, gel on the cath or spray it with liquid?
              Last edited by CapnGimp; 04-04-2010, 07:32 PM.

              https://www.facebook.com/john.baxter.1213986

              Comment


              • #8
                Originally posted by Wise Young View Post
                Jenjen,

                That is interesting. How does it get into the gut?

                Wise.
                I wish I could explain. It was explained to me by 2 friends; one a pharmacist, the other a toxicologist but there was a lot of wine and I really don't remember. I may be mis-stating the medical side with lay terms, so here is my lay explanation.

                I hope you'll remember a point in time about 2 years ago when I was struggling with bladder infections to the point of near death. Since my medical team was out of ideas, I decided to try Bob Clark's protocol but it was way too harsh for female genitalia. He told me about Microcyn and a Google search lead me to the Vetericyn.

                I used the Vetericyn as a periwash before cathing and at first I would apply some to the same spot on the inside of my mouth each time because I reasoned that if it irritated my mouth, it was irritating my labia.

                Back when I was dealing with UTIs and continued sepsis, etc., I was using intravesticular Gentimyacin daily, after deciding that the Vetericyn was not irritating my external tissue (thru my highly unscientific method) I tried it internally instead of the Gent. The impact on my UTIs was immediate and dramatic.

                When I hit the 6 month mark UTI-free (before I was averaging 2 UTIs a month) I knew I was on to something and started sharing the idea with my doctors and friends. At one point I complained that I finally had my bladder issues under control and now my always-dependable bowel program had gone crazy. The others using Vetericyn as I was also said the same thing.

                When I backed away from putting the Vetericyn in my bladder and leaving it until the next cath, my diarrhea cleared up pretty quickly. A little more cause and effect experimentation seemed to show a link.

                There was this long explanation of how the cells were small enough to pass through the bladder wall and permeate the surrounding tissue and the ions that killed the weebeasties in my bladder were killing the flora I needed for digestion. As I said, there was wine involved in the conversation...

                I now use Vetericyn as a peri-wash before every cath. When I start to experience symptoms of UTI, I instill 20 CCs for no longer than 10 minutes and the symptoms go away (I LOVE sparkly pee) and I experience none of the nasty side-effects that we anecdotally linked to its use.

                I hope this helps in some way Wise. To call this "kitchen science" would be kind at best. All I know is it's working at last and I'm no longer sick enough to worry about dying once or twice a year.

                However I got there, I'll take it.
                My blog: Living Life at Butt Level

                Ignite Phoenix #9 - Wheelchairs and Wisdom: Living Life at Butt Level

                "I will not die an unlived life. I will not live in fear of falling or catching fire. I choose to inhabit my days, to allow my living to open me, to make me less afraid, more accessible, to loosen my heart until it becomes a wing, a torch, a promise. I choose to risk my significance; to live so that which comes to me as seed goes to the next as blossom and that which comes to me as blossom, goes on as fruit."

                Dawna Markova Author of Open Mind.

                Comment


                • #9
                  Hello Cap'n!!!! How's life treating you these days??

                  I use the liquid. I take the little straw out of the sprayer and use the bottle by turning it upside down so I can reach. You will not need to take that step. I just generously spray my genitals and insert my cath which has been wet in the same stuff (I keep some in another bottle for dipping caths). It IS expensive but (for me), well worth it. I was dying from my constant UTIs at the time. Bob was a huge help to me.

                  He has some other ideas on how to do this less expensively but I'm not willing to give up what's currently working so well for over 2 years.

                  I use Vetericyn on EVERYTHING. My toes when I rip them up, Pearl's hot spots. Things do seem to heal more quickly as claimed on the website. I hope you get the same benefits that I have from it!


                  Originally posted by CapnGimp View Post
                  Leila, Thank you very much for taking the time to type all this up. Bob has been spreading the wisdom for years, lol. Like MOST other things health/equipment and supplies-wise, the REALLY useful items will probably NEVER be widespread.

                  I'm gonna try to find the vet equivalent Jen, if it's readily available, I'm getting it.


                  Damn they are proud of it, AMazon has it also.

                  FYI varies to approximately 40 bucks for 16 oz either gel or liquid


                  how do u use it Jen, gel on the cath or spray it with liquid?
                  My blog: Living Life at Butt Level

                  Ignite Phoenix #9 - Wheelchairs and Wisdom: Living Life at Butt Level

                  "I will not die an unlived life. I will not live in fear of falling or catching fire. I choose to inhabit my days, to allow my living to open me, to make me less afraid, more accessible, to loosen my heart until it becomes a wing, a torch, a promise. I choose to risk my significance; to live so that which comes to me as seed goes to the next as blossom and that which comes to me as blossom, goes on as fruit."

                  Dawna Markova Author of Open Mind.

                  Comment


                  • #10
                    Microcyn liquid and gel are available at Metromedicalonline. We get the 8 oz bottles of liquid for $28 per bottle. If you buy two bottles or more you get free shipping. We buy three bottles per month, thus $84.00 per month. John (my husband) uses a bottle every ten days. He is extremely careful with it and wastes not a drop. The gel can now be paid for with Medicaire/Medicaid (of Medi-Cal) but they are still struggling to get the liquid covered. The Vets Admin is still dragging its feet. The 16 oz bottles of liquid are cheaper, but require a prescription.

                    Good to finally hear from you Jen Jen. Your story is really compelling. John too had sepsis at one time from a UTI, and he went into septic shock and it nearly killed him. No more of that now. We don't have to live in fear.

                    The bladder flush can be extremely effective if done right. Seems like you finally got it through trial and error.

                    They are working on delivery technology is get microcyn into the airways of people who have drug resistant respiratory infections. This is going to be a real breakthrough when it happens.

                    More later.

                    Leila (Susanne Lewis)
                    I'm back on Facebook again--up and running!

                    http://www.facebook.com/profile.php?...00000532232573

                    Comment


                    • #11
                      Leila and Jenjen,

                      Let me put my critic hat on and ask the questions that some doctors may ask. • What is the long term safety of this treatment?
                      • Why does it kill bacteria and does it kill all types of bacteria?
                      • What if there are stones in the bladder?
                      • What are the safe and effective doses?
                      • Is it enough to do this once a day or once a week, etc.
                      • Can this be used for children.
                      • Is intravesicular distillation necessary?
                      •* Does it really kill the bacteria (cultures would be needed to determine this).

                      Wise.

                      Comment


                      • #12
                        I am so grateful that I stumbled upon this thread this morning. Thank you, thank you. Like most people who have a neurogenic bladder, I constantly get infections (2-3/month). The twist for me has been since getting the mitrofanoff - in which a piece of my intestine was used to augment my bladder - my bladder produces mucous (the intestine does not forget it's original function). Very little mucous is produced when I have no infection, but there's lots when I have an infection. The mucous reacts with the chemicals/nutrients or what-have-you in the urine and forms into stones. I go once a year to have the stones removed the usual way (scope, zap, remove), but last month there were so many stones (over a hundred) my urologist had to open up my bladder through my abdomen to get them all out. The procedure went ok, but the recovery sucks and I hate the risks associated with surgery.

                        My bladder infections are typically colonized with few side effects so treating them with antibiotics seems unnecessary (and creates resistance) - except for the stone formation. I'm trying find the balance between treating infection to reduce the stones and leaving the colonies so I don't become resistant.

                        If vetericyn/microcyn works, it could mean the end of my bladder stone problem.

                        Comment


                        • #13
                          All good questions Wise. I'm a lay person and a lazy thinker, so I don't have all those answers. Someone should go find out.

                          What I do know is that this product has been proven safe and effective on living tissue. It's used on humans in other countries to treat some horrific wounds. Here in the US, I have friends who now use it regularly in their horse and dog breeding businesses. These are multi-million dollar operations that find the product invaluable and use it with their vets' blessings. They keep good records and can show cause and effect.

                          Personally I know that in my first 3 years of SCI I had 10 hospitalizations for sepsis due to UTIs, In 4 of those hospitalizations, I was not expected to live. I was counseled to prepare myself for end of life as we couldn't find a way to keep me healthy and each infection was making me weaker and weaker and more resistant to ABX. My hearing's been destroyed by IV Gent. My arms are scarred by PICCs.

                          Since I started using the Vetericyn 2 years ago, the only times I've developed infections is when I've let myself run out of the product. As soon as I show signs of infection, I increase my usage and the SX go away. Anecdotal at best. I make room for the possibility that this is co-incidence or a placebo effect of some sort.

                          All I do know is that not only am I still alive ( and none of my medical team would have bet on that a couple of years ago). Not only am I alive, but living infection-free for an extended period has allowed me to develop a vitality again that allows me to work, work-out and participate in marathons. I directly attribute all of this to a healthy bladder.


                          Originally posted by Wise Young View Post
                          Leila and Jenjen,

                          Let me put my critic hat on and ask the questions that some doctors may ask. • What is the long term safety of this treatment?
                          • Why does it kill bacteria and does it kill all types of bacteria?
                          • What if there are stones in the bladder?
                          • What are the safe and effective doses?
                          • Is it enough to do this once a day or once a week, etc.
                          • Can this be used for children.
                          • Is intravesicular distillation necessary?
                          •* Does it really kill the bacteria (cultures would be needed to determine this).

                          Wise.
                          My blog: Living Life at Butt Level

                          Ignite Phoenix #9 - Wheelchairs and Wisdom: Living Life at Butt Level

                          "I will not die an unlived life. I will not live in fear of falling or catching fire. I choose to inhabit my days, to allow my living to open me, to make me less afraid, more accessible, to loosen my heart until it becomes a wing, a torch, a promise. I choose to risk my significance; to live so that which comes to me as seed goes to the next as blossom and that which comes to me as blossom, goes on as fruit."

                          Dawna Markova Author of Open Mind.

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                          • #14
                            I have contacted Oculus, and they are consulting their medical director. They are talking about doing an "in-sevice" interview with you, Dr. Young. Only that will truly answer your questions. They will let me know today or tomorrow what steps to take.

                            Jen Jen--your story is so dramatic and compelling. No need to be apologetic about your lack of technical knowledge. Your experience speaks for itself. Please don't "damn with faint praise." Placebo? I think not. Placebos are the stuff of imagination and would only be effective against imaginary microbes. Yours were real, and they were killing you. You found the right way. Glad you're still with us.

                            Leila
                            I'm back on Facebook again--up and running!

                            http://www.facebook.com/profile.php?...00000532232573

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                            • #15
                              I should also say that Oculus can only answer your general questions, Dr. Young. Answers specific to the rinsing technique we are using to prevent UTI's can only be had from those who are doing the technique. So, to answer your question, "Is is enough to do this once a day or once a week?"--we would have to say that it should probably be done prior to each catheterization. That's the safest way. Microbes can be introduced each time the catheter is inserted, no matter how careful you are. My husband, John, attached a six inch length of catheter to a 10 cc syringe. He draws up about 5 cc of Microcyn and irrigates the length of the penile urethra (not penetrating the external sphicter). He then waits 30 seconds (the kill time for Microcyn) and catheterizes as usual. His urethra is always clean as a whistle. Really clean. Thus no infections.

                              You have to realize that Microcyn is used in the deepest most terrible wounds and always promotes healing. It in no way traumatizes the tissue. That's why it's safe to use in the urethra.

                              Anyway, I'll let the experts speak with you about the rest of it.

                              More later.

                              Leila
                              I'm back on Facebook again--up and running!

                              http://www.facebook.com/profile.php?...00000532232573

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