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

  1. #911
    verry impressive.how much d- monnose do you use daly[& many times] same with V how many times a day do you flush the bladder & how much do you use for how long. I do not suffer weakness but i seem NOT to be able to get rid of the E-COLI. thanks poobear

  2. #912
    Junior Member
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    Hi poobear - Before we knew about V, took D-mannose 1 tsp every 2 hrs day and night for weeks. Now that VF has got rid of the colonizations, we are doing 1/2 tsp every 2 hrs daytime, and a heaping tsp before bed, another during the night after an IC, and another first thing in the morning. (trying to cut down the liquid at night so fewer times getting up and more sleep, but trying for a high prescence of D-mannose in the bladder all the times).
    Using regular V now, 60 ml left in the bladder 20 min, are experimenting with every other night at bedtime. If the Leukocytes start to go up (we use the test strips), will try every night at bedtime.
    If he starts getting burning and other UTI symptoms, he takes a heaping tsp of D-mannose immediately, another in an hour, then back to the regular program. Will feel better in a couple hrs. But then we look at whether we need to increase frequency of the V, since E-coli has tried for a comeback.

    I honestly don't think we will ever get rid of E-coli. It's all over, you can't see it, and for those using a catheter, it's too easy for it to get back into the bladder, one way or another. Unless you wanted to live in a sterile bubble, that might keep you safe from this bacteria. But I do think with knowledge and perseverance, and products like V and D-mannose and abx (if they are still working for you), we can keep the bacteria at a low enough level so you can feel well.

    I know somebody reported that their Dr told them that E-coli was "easy to get, and easy to get rid of" .......???? Easy to get, sure, Easy to get rid of, Hogwash!!!!
    E-coli is tough, resilient and prolific! It hides and goes dormant in the biofilm where abx can't get at it, comes out when the coast is clear and can double it's #'s every 20 min, and has little propeller like things that allow it to move around at an amazing speed ( taking into account how small it is), and it is harder and harder to find abx it is not resistant to.

    I think we just have to keep up the fight.

  3. #913
    Please don't forget, water, water, water. Water is still the most important ingredient for a healthy urinary track. I drink between 3 and 4 liters a day and flush with VF once a week. Urine stays clear. Does your husband drink enough?

  4. #914
    thanks caregvr for the input. no question e-coli is a tough mother all we can do is keep up the fight. poobear

  5. #915
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    Hi rubberaslegs -
    Agreed, water water water is a necessity. He has to monitor input and output so knows he is drinking 3 litres daily. Just good old water worked for the first 18 months of IC's after SCI. Then he was put on a Foley for 6 mnths with constant UTI flare ups and abx. Back doing IC's now but that period seemed to mess up everything. So if the body system is totally out of balance, you will need the water as well as everything else you can come up with to try and keep on top of the problems.

    Taking in lots of water at night is counter productive as well, as he found he was needing to get up every hour for bathroom visits - results, no restful sleep at all, so spending daytime hrs in bed, bleary eyed and exhausted. And that's going to drag down the immune system as well.

    So our practice now is lots of water during the day, but cut it back at night and use V and D-mannose to get thru to morning.

    Would be nice if he could get back to using just lots of water as he did for those first 18 mnths, but probably not a realistic goal at this point.

  6. #916
    Senior Member WPDaggy's Avatar
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    caregver,

    When I was ICing I used the one-time-use disposable catheters. At night we would insert the catheter into my bladder, wrap some tape around the catheter at the "nipple" (taping it to the nipple) where the catheter came out of the bag to keep it from sliding out, then tape the bag to my penis. In order to keep from filling the bag, which I believe held 1500 ccs, we would put the catheter bag inside of a big Ziploc bag and put a little hole in the catheter bag so that it could leak out into the Ziploc bag. That way I could sleep through the night without having to be catheterized. And I could drink all I wanted in the evening before bed.
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  7. #917

    New to board

    Hi Folks, I can't speak to the issue of colonization. I don't know much about it. I will share my limited experience with intermittent catheters and Vetericyn and a different technique: - I believe my immune system is not compromised. - Previously, I had two MRSA infections, 3 months apart. An enterobacter infection 1+ year ago. All treated with antibiotics - During my last round of antibiotics, I started using Vetericyn (liquid and gel) BUT ONLY ON THE TIP tip of penis and entry into to meatus. First liquid (1min) then gel (aprox 2 minutes while prepping to cath) ... providing reasonable kill time. - I use disposable caths and one sterile glove on the hand that touches catheter - Infection free for 6 months Why not instill Vetericyn? - I was a bit nervous about introducing Vetericyn into my urinary tract (but keeping it as "Plan B" option if my method didn't work. - My theory is that killing/avoiding microbes at the source - hand, and meatus would prevent microbes from entering the urinary tract (colonization, not withstanding). I welcome all comments.

  8. #918
    I get a lot of UTI without cathing too so I am sure the cathing is not always the problem. Three years ago I had 20 UTI in one year,

    I have just had one, E-coli - ESBL, used Nitrofuradantin for two weeks and started with Vetericyn at once and it is gone. I do not have any colonization either. From experience, the UTI is coming back nearly at once after the Nitrofuradantin and then I am ending in the hospital, in isolation, for IV antibiotics for two weeks. So I hope the e-coli ESBL is staying away for a while because I need a rest. I have been six times in the hospital in two years and been sick most of the time in between. It is hell.
    TH 12, 43 years post

  9. #919
    Quote Originally Posted by kmelinda View Post
    I been irrigating with 35-40 ccs 2 x a day, spraying my genital area, and spraying my cathedar tubing connections area after cleaning with bleach water for one month as of April 1. So far, my urine is still clear like water. I no longer have random bladder spasms and bladder pain. I started useing this after getting MRSA in my bladder and taking 2 weeks of Macrobid. I started irrigating on day 13 of my anitibiotics I have not tested my urine since but plan to in a few days. I wear an indwelling foley too.

    Melinda

    I received my culture today. I'm still clear of the MRSA, but I have a new bug [1 have never had before]. It's an acinetoracter species [50,000 cfu/ml], and the only symptom I'm experiencing is fatigue. I am normally having constant spasms and pain. Anyways, I'm just going to drink extra [more than my 3 liters] and keep irrigating and recheck things in a few days.

    I just read a prior post about gram negative bugs releasing toxins when being killed, and this is one. So, I guess that could explain the extra fatigue. Anyways, lets hope and pray I can kill these unwelcome visitors without antibiotics.

    Melinda

  10. #920
    Does anyone see a huge difference between the regular Vetericyn and the Vetericyn-vf? Just interested on which I should choose. Any opinion would be greatly appreciated!

    KC

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