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  • #16
    Originally posted by Martiniani77 View Post

    Thats what ive been doing mostly antibiotics 1 month free repeat culture analyse...
    Now its time to do a therapy culture to check.
    Its hard to drink a lot of fluids when doing intermittent catheter it can fill pretty fast and in my case i get all hot and dizzy with a high heartbeat.
    Thats how i understand its time to go to the bathroom which usually leaves me no time.

    A few months ago i was on a nitrofurantine cure. Practically this medicine disinfected the bladder, was an antiseptic not an antibiotic.
    While being on this cure i was mostly alright but it was stoped by my doctor after surviving a sepsis.
    He said it lowered the imunity and made the antibiotics more resistant.

    Vit C is a must also Gentamicin, going to check as soon as possible with my doctor.
    Thanks for the useful information.
    That's interesting that the doc said the antiseptic lowered the immunity. I feel like i had a similar side affect of flushing with MicrocynAH...i found a study that also suggested that flushing did not show improvments. It didn't specify lowering immunity (unless i missed that part) but my take-away/anecdotal is i feel flushing with an antiseptic is interfering with the natural balance within the bladder. Of course when you're infected or even colonized i don't think it's bad to flush to get some sediment etc out and cut down on the already imbalance of bacteria. Or if you do not get AD when flushing you just might be able to 'Micodox' your way out of the infection and then let the body 'rebuild' and hopefully with a healthy flora again?

    Yes, IC does sound like it could make it very challenging to drink lots which is one of my biggest reasons to stick with condom/leg bag for now. And i seldom get AD when the bladder is full. When i do get it however i don't get the dizzy symptoms you mention...just mild AD which is a slight increase in blood pressure and elevated temperature. For me however my BP runs low so the increase puts me in normal range for the 2 mins that i get it during voiding. I think IC might be a better approach when you don't have a UTi though....better not to have any pressure in the bladder/AD.

    Hope you get a good culture result (sounds like you are about to drop one off?)

    Comment


    • #17
      Originally posted by crispy1981 View Post

      That's interesting that the doc said the antiseptic lowered the immunity. I feel like i had a similar side affect of flushing with MicrocynAH...i found a study that also suggested that flushing did not show improvments. It didn't specify lowering immunity (unless i missed that part) but my take-away/anecdotal is i feel flushing with an antiseptic is interfering with the natural balance within the bladder. Of course when you're infected or even colonized i don't think it's bad to flush to get some sediment etc out and cut down on the already imbalance of bacteria. Or if you do not get AD when flushing you just might be able to 'Micodox' your way out of the infection and then let the body 'rebuild' and hopefully with a healthy flora again?

      Yes, IC does sound like it could make it very challenging to drink lots which is one of my biggest reasons to stick with condom/leg bag for now. And i seldom get AD when the bladder is full. When i do get it however i don't get the dizzy symptoms you mention...just mild AD which is a slight increase in blood pressure and elevated temperature. For me however my BP runs low so the increase puts me in normal range for the 2 mins that i get it during voiding. I think IC might be a better approach when you don't have a UTi though....better not to have any pressure in the bladder/AD.

      Hope you get a good culture result (sounds like you are about to drop one off?)
      Tried intermittent cathing for a day but definitely cant anymore.
      Today switched up to foley baloon catheter and did culture analyse, will be up in 3 days.

      Isnt it a problem to let the bladder fill up ? With the condom catheter i always feel full in my bladder.
      Also in my experience they were not reliable many times it has come off.

      Comment


      • #18
        Originally posted by Martiniani77 View Post

        Tried intermittent cathing for a day but definitely cant anymore.
        Today switched up to foley baloon catheter and did culture analyse, will be up in 3 days.

        Isnt it a problem to let the bladder fill up ? With the condom catheter i always feel full in my bladder.
        Also in my experience they were not reliable many times it has come off.
        Yes it does suck never having an empty bladder and also the condom does come off often but not nearly as often as having to find an accessible bathroom and IC 3 to 4 times a day (not being adversarial...that's truly a fact that i consider). What i mean by that is its much easier to find a place to empty a leg bag than IC discretely especially considering the pieces you need to carry about to do IC. I wished very much that i would empty completely mainly because at the beginning of my exercise i have to stop a couple times to 'void' before my bladder gets to the point where it won't need to be emptied for an hour or so while i exercise. But after the initial activity i'm good. I truly do not know if im better off with condom/leg bag or IC. I wished we could easily switch back and forth. I have a friend whom is also T3 and was taught IC instead of my setup so its largely what you get used to. My main fear is UTis and avoiding Anti Biotics. I have found my best defense against UTis is the ability to drink a lot and that's harder to do with IC (i think).
        Last edited by crispy1981; 05-08-2020, 01:22 AM.

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        • #19
          MD stopped it because the urine organism(s)became resistant to Nitrofurantoin. And Nitrofurantoin is for a "simple UTI" bit recurrent UTIs. Long term it can also cause pulmonary fibrosis. I never prescribe it unless it is the only medication the organisms is sensitive to. Most do not use anymore because it doesn't usually work for very long. And also the patient gets symptoms of a UTI and ignores it because they are on the Nitrofurantoin then they get septic, go to ICU, maybe in to septic shock and maybe have to be put on a ventilator or die.
          People get a false sense of security with it.
          CWO
          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


          • #20
            Originally posted by Martiniani77 View Post

            Vitamin C what dosage ? I might start using it

            Methenamine is an antibiotic ? I read that it does not fight a current infection but is used to prevent the growth of bacteria in bladder
            An old procedure of acidifying the urine with large doses of vitamin C has been show to be no more effective than placebo in several studies. The usual dose used was 1000mg./day. It is important not to take more than that as megdoses of vitamin C can cause other problems.

            Mandelamine or Hiprex are so-called urinary antiseptics. In an acid urine (created by taking vitamin C as above usually) they transform in the bladder (not the kidney) into formaldehyde, which is fatal to many (but not all) bacteria. It is also not used much anymore, as studies have also shown that it's performance as a preventive product for UTI in people with neurogenic bladder was no better than, and some cases worse, than placebo. It is not for treatment of existing UTI either.

            If you have an indwelling catheter, there is about a 99% chance that you will colonized with bacteria within 3 days of insertion into a sterile bladder, and chronic colonization is expected to continue with long term use. This is not the same as a UTI, and rarely should be treated as such.

            (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


            • #21
              Originally posted by SCI-Nurse View Post

              An old procedure of acidifying the urine with large doses of vitamin C has been show to be no more effective than placebo in several studies. The usual dose used was 1000mg./day. It is important not to take more than that as megdoses of vitamin C can cause other problems.

              Mandelamine or Hiprex are so-called urinary antiseptics. In an acid urine (created by taking vitamin C as above usually) they transform in the bladder (not the kidney) into formaldehyde, which is fatal to many (but not all) bacteria. It is also not used much anymore, as studies have also shown that it's performance as a preventive product for UTI in people with neurogenic bladder was no better than, and some cases worse, than placebo. It is not for treatment of existing UTI either.

              If you have an indwelling catheter, there is about a 99% chance that you will colonized with bacteria within 3 days of insertion into a sterile bladder, and chronic colonization is expected to continue with long term use. This is not the same as a UTI, and rarely should be treated as such.

              (KLD)
              I have started using vitamin C but didnt see any big benefit from it. Drinking a lot also is helping.

              Analyse response came out and i was diagnosed with klebsiella pneunoma. It showed a list of antibiotics but my doctor prescribed me as below.

              1 day use , 1 off and 1 more use of Fostamicine 3mg.. 2 packets in total
              after this i have to start 3x daily of Furamag for 10 days

              I have a indwelling catheter currently with a baloon. I have to take it out time to time to be sexually active with my girlfriend and insert it again carefuly myself.
              Is this a problem ?
              I might be colonised like you are suggesting. Please tell me more how to proceed in this case.

              Comment


              • #22
                Do you mean Fosfomycin? Oral fosfomycin should be used only for uncomplicated (ie, lower) UTIs caused by susceptible pathogens. By definition, true UTIs in people with SCI are considered complex UTIs, Did you have actual signs and symptoms of a UTI (fever, chills, severe malaise, autonomic dysreflexia, elevated WBC in your blood)? Or is it just based on a positive culture without symptoms (colonization). This antibiotic is primarily used for simple UTI confined to the bladder in women, which may be treated witih one or two doses only. A longer treatment course is probably necessary for infections at other sites (eg, prostate).

                Furamag (furasidine potassium and magnesium hydroxycarbonate) is an antibiotic available only in Russia and some other former Soviet Block countries. It is not used in the USA or Canada or Western Europe. Furazidine is a nitrofuran derivative, acting as an antibacterial medicine with bacteriostatic action.

                Were these two drugs included in your sensitivity test of your urine?

                Frequent insertion and removal of an indwelling catheter can lead to a higher rate of infections. In addition, you should never remove and replace an indwelling catheter with the same catheter. A new sterile one must be used each time, and with sterile technique.

                Many men who use indwelling catheters prefer to have a suprapubic catheter inserted, as this does not interfere with sexual activity, and also lowers your risk of urethral fistulas and other urethral injuries compared to an indwelling urethral catheter.

                (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


                • #23
                  Martiniani77, can you paste the culture results? Have you had an Infectious Disease doc review the results?

                  Comment


                  • #24
                    I can’t speak of some of the other medicines and techniques. I’m reading your post to not only help you but maybe myself at the same time.

                    But don’t start the Gent bladder flushes. I was shown the same study saying after 6 months it shows no resistance. My urologist knew the study’s and knew the risks. And under a year I was resistant to Gentamicin!! Don’t play with Antibiotics. I’m searching for the right track like you but that’s not it I promise everyone who’s taking it.
                    Mark 9:23 - All things are possible for those who believe.

                    Comment


                    • #25
                      Actually, my Dad has had good success with fosfomycin for complicated UTIs. It is starting to be used more for complicated utis and is recommended more by Infectious Disease docs, less by urologists who are not familiar with it.

                      Since fosfomycin has not been used for many years, there is not as much "resistance" to it. However, most labs do not check for sensitivity to this antibiotic when you get a urine culture with sensitivities done. Your doctor needs to specifically write on the prescription to check for fosfomycin sensitivity, or the doctor can call the lab and ask them to add it on to the original order.

                      My Dad has unfortunately had a resurgence of UTIs this year, after a few years of success on using Gentamicin instillations for UTI prophylaxis. He has used fosfomycin twice in the past 6 months. Only 3 doses, every other or every 3rd day. The bacteria that caused his infections was a highly resistant one (ESBL E Coli) that was resistant to many antibiotics (bactrim, nitrofurantion, cipro etc...) but it was susceptible to fosfomycin.

                      Fosfomycin needs to be taken early though, and not after the urinary tract infection has spread to the kidney or to the blood. It is less effective for that severity of infection.

                      Comment


                      • #26
                        Please note that the OP lives in Albania, where drug and medical services availability may not be the same as in your country.

                        (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


                        • #27
                          Originally posted by SCI-Nurse View Post
                          Please note that the OP lives in Albania, where drug and medical services availability may not be the same as in your country.

                          (KLD)

                          Sure - I think they were talking about fosfomycin though....

                          Martiniani77 mentioned: "1 day use , 1 off and 1 more use of Fostamicine 3mg.. 2 packets in total"...

                          That is a bit confusing, probably due to language issues. But Fosfomycin comes in packets... each is 3g though. You take one packet per day (dissolved in water), then a day off, then one packet etc... And it isn't well established how many packets/doses to use for a complicated UTI. Someone else posted on CareCure that their doc had them take 5 doses/packets. My Dad's ID doc told him to try 3 packets. He had a some diarrhea after the first dose, so he spaced it to one packet every 3rd day the next time he used this antibiotic. Fosfomycin has a very long half life.

                          Since it is a very old, very cheap antibiotic, it didn't surprise me that it might be one available in Albania.

                          Comment


                          • #28
                            Originally posted by crispy1981 View Post
                            Martiniani77, can you paste the culture results? Have you had an Infectious Disease doc review the results?
                            Click image for larger version

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                            • #29
                              Update on my UTI situation.

                              I had a visit with my urologist who told me to continue the furamag cure for 1 week 2x1 and later for one month 1 pill daily.
                              This will be to make sure there is no more infection
                              Also he mentioned probably oxybutinin isnt working on my body so he prescribed me other medications antispasmic for the bladder to try.
                              Maybe one of them works before proceeding to botox injecitons.

                              Comment


                              • #30
                                Originally posted by Martiniani77 View Post
                                Also he mentioned probably oxybutinin isnt working on my body so he prescribed me other medications antispasmic for the bladder to try.
                                Maybe one of them works before proceeding to botox injecitons.
                                Which other anticholenergic medication did he prescribe for you?

                                (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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