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  • #31
    Let your urologist know. And drink, drink, drink!
    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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    • #32
      Over the 40 years I have had very few UTI, however since Jan I have had 4 infections of e coli and each time I am prescribed 1 wk of TMP 300mg. I am getting annoyed with the recurrence of infection and this time have cleaned all appliances etc. I use leg bag with Uri-dome and I was very interested to note gjnl point out that bladder infection for SCI must be treated as a complex infection and the course should be no less than 12 to 14 days, GP not giving me long enough course ??

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      • #33
        Originally posted by gommer View Post
        Over the 40 years I have had very few UTI, however since Jan I have had 4 infections of e coli and each time I am prescribed 1 wk of TMP 300mg. I am getting annoyed with the recurrence of infection and this time have cleaned all appliances etc. I use leg bag with Uri-dome and I was very interested to note gjnl point out that bladder infection for SCI must be treated as a complex infection and the course should be no less than 12 to 14 days, GP not giving me long enough course ??
        Your physician is treating your infections as if they were a one off occurrence rather than the complex infections they are. I don't get the impression that your physician is ordering urinalysis (UA) and culture & sensitivity (C&S) urine tests before prescribing an antibiotic. When you get these tests, the C&S will indicate the type of bacteria present and several antibiotics that may or may not be the best choices of treatment. After 4 frequent and recurring urinary tract infection, I'd suggest it is time to make an appointment with an infectious disease doctor who is more capable of selecting the right antibiotic and term of treatment.

        Your treatment plan should include:
        1. when you feel you have an infection, get a UA and C&S to determine the type of bacteria, the bacteria count, and the most effective antibiotics to treat the infection.
        2. take a 12-14 day course of the antibiotic.
        3. two days after the course of antibiotics is finished, get another UA and C&S to determine if the antibiotic has dealt with the bacteria successfully.
        4. if bacteria is still present, you will need either another course of the same antibiotic or a course of a different antibiotic that was shown to be effective against the bacteria.
        5. after the second course of antibiotics, get another UA and C&S.

        Some people have found d-mannose (available over the counter) to help in preventing urinary tract infections. D-mannose helps to prevent e coli bacteria from sticking to the bladder wall.

        All the best,
        GJ
        Last edited by gjnl; 05-06-2016, 10:50 PM.

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        • #34
          Thanks gjnl, I will certainly look into that d-mannose, I had a string of infection many years ago as well but managed to get rid of it, as it is the same bug I think it likely that the course is not long enough and is not killing the crap.

          Went and got some D - mannose today (product called Clinicians Bladder Support). My antibiotics are meant to finish on Tuesday unless I can convince GP to extend the course and I was wondering if I can take the Bladder Support product whilst still on my TMP course ??

          Just had a reply which said that no problem taking the bladder support with antibiotics, also just realized the cranberry capsules I have been taking are all expired in 2014 and have about 20 bottles of the stuff will have to throw out. Also they are only 10,000's and the 2 I was taking are not enough anyway and needs 50,000, should get replacement today.
          Last edited by gommer; 05-09-2016, 05:09 PM.

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          • #35
            Further, I do have MSU to find out what bug I have and it has been e coli every time. I note the D Mannose if one has an infection of e coli should be taken every 4 hours whilst awake (1 to 2 spoons) for 2 days then 1/4 to 1/2 spoon twice daily for 3 days. I have read that Grapefruit seed extract is good for UTI ??

            I am taking also 1 50,000 cranberry capsule per day but it appears that many studies have found that it does not prevent UTI, I think I read somewhere that the problem is that the stomach acids neutralize the effectiveness in capsule form, also the dose needs to be very high, not sure what a correct dose is for SCI

            Also heard today that the drug Nitrofurantoin which a few of my friends have been on long term can, in a percentage of people, damage your lungs if taken for longer that 6 months

            I have also seen a clinical study for SCI & UTI that found that every time the same antibiotic is used to treat the same bacteria it becomes 7% more resistant
            Last edited by gommer; 05-17-2016, 04:06 AM.

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            • #36
              here, i buy bulk dmannose. same stuff and works great.
              http://www.amazon.com/BulkSupplement...ilpage_o01_s00
              Originally posted by gommer View Post
              Thanks gjnl, I will certainly look into that d-mannose, I had a string of infection many years ago as well but managed to get rid of it, as it is the same bug I think it likely that the course is not long enough and is not killing the crap.

              Went and got some D - mannose today (product called Clinicians Bladder Support). My antibiotics are meant to finish on Tuesday unless I can convince GP to extend the course and I was wondering if I can take the Bladder Support product whilst still on my TMP course ??

              Just had a reply which said that no problem taking the bladder support with antibiotics, also just realized the cranberry capsules I have been taking are all expired in 2014 and have about 20 bottles of the stuff will have to throw out. Also they are only 10,000's and the 2 I was taking are not enough anyway and needs 50,000, should get replacement today.
              Bike-on.com rep
              John@bike-on.com
              c4/5 inc funtioning c6. 28 yrs post.
              sponsored handcycle racer

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              • #37
                I am taking one of the 1.25 ml spoons of powder twice daily, have noticed that it appears to loosen bowels somewhat, do not know if anyone else has found this. Am awaiting MSU result which I will get today and emailed GP to say that if I still had e coli infection I need to be on the different antibiotic for longer than the 1 week he has been giving me. My even try the D - Mannose by itself to see if I can flush the e coli out.

                And thanks fuentejps but in NZ we get the stuff supplied by our insurer ACC

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                • #38
                  Well got MSU results today, mixed growth so no obvious infection. Am taking one cranberry 50,000 capsule & 1 general probiotic (25 Billion good bacteria per capsule apparently, not like I can count them) urine still a bit cloudy even though I am drinking a lot of water. Wear Uridome and just free flow as had sphincter chopped (not gold standard these days) years ago and may not be working so good now as scar tissue can over time reduce flow
                  I tap to help bladder fire and lean forward to put pressure on bladder but I note SCI nurse on another thread said that these are no longer recommended. Just discovered what cred is and am happy to say that I never employed this technique. I am to see a urologist soon so she can have a look at things with camera. I heard that Oregano Oil can be used for UTI with some success ?

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                  • #39
                    I have not heard of the oregano oil fix. That is not to say that it is not worth looking into - just not heard of it.
                    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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                    • #40
                      Thanks SCI Nurse, it is mentioned on a number of threads on this forum. I was wondering if those on the forum who use d-mannose do so as a regular supplement every day and how much they take, I think the amount I am taking does loosen the bowels somewhat.
                      Been doing some online investigation on Oregano Oil and although there is some evidence that it kill bugs in the test dishes there is no scientific study that ingestion of capsules will have the same effect where you need it,
                      Last edited by gommer; 05-19-2016, 02:48 AM.

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                      • #41
                        Some people use the d-mannose regularly and others use it when they feel like they may be getting a uti. I know that is not helpful, but from my experiences that is the way it is. I am not sure that using it regularly is beneficial - but I do not knock what other people do that is successful for them. Remember that it is only effective on one organism - e. coli. So if your infection is from another type of bacteria, it will have no effect.
                        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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                        • #42
                          I have a spinal cord injury. I live with an indwelling catheter. I have been plagued with chronic UTI for the last 7 years since my accident. I am 30 years old and in great health on the exception of my paralysis. I am either on antibiotics or infected. One or the other. I have tried almost every supplement on the market. I have come across. I am consistent with them, and sometimes triple dose. I drink nearly 2 gallons of Kangen water daily. I take Dman, cranberry, ACV, Olive leaf capsules, Oregano capsules, and the list goes on daily! I recently started a regimen with Lugols (which gives me the most relief). However, my infections remain. To be honest, these infections are worse than my paralysis. I go hard at everything I do. These infections are so tough... I know there is an answer. Anyone, if you have some advice. Please help me! I have three boys that I continue to fight for. This is so hard for me! I become depressed and I am not as functional or productive, like a father should be. Please help me!
                          Last edited by SCI-Nurse; 05-20-2016, 12:02 PM. Reason: remove personal e-mail address
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                          • #43
                            I agree MrAmbassador that UTI is one of the curses of SCI, SCI - Nurse has pointed out previously that UTI should only be treated if it is making you unwell (symptomatic) and one school of thought I read was that post an antibiotic course one needs to pump in the good flora again as the drugs kill the good and bad bacteria and that enough good flora will mean that the UTI bugs will have a harder time getting going. The other advice was to see a specialist to look at your drug regimen. The most comprehensive studies according to my GP found that cranberry was of no help and Oregano capsules have only been proven to kill harmful bacteria in a lab setting and there is no evidence that taken in capsule form that it will reach your bladder in enough concentrations to be of any benefit. IN some brands of Grapefruit Seed Extract for example it was found that it was the introduced synthetic antiseptics that was giving the product the UTI punch

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                            • #44
                              Can you detail for us how your physician treats your urinary tract infections? Does he do urinalysis (UA) and culture & sensitivity (C&S) urine tests before he prescribes an antibiotic? Does he order these same tests 2-3 days after you have taken the antibiotics? How long of a course of antibiotics does your physician prescribe...5 days, 7 days, 12 days etc?

                              Have you consulted an infectious disease physician?

                              What type of indwelling catheter are you using...supra pubic or urethral? Silicone or Latex?

                              When you drink that much water, are you getting regular blood tests to tract your electrolyte balance?

                              Have you been tested for bladder or kidney stones?

                              Have you read (on this forum) about Microcyn Technology?
                              http:///forum/showthread.php?133414-...light=microcyn
                              http:///forum/showthread.php?232394-...light=microcyn

                              All the best,
                              GJ

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                              • #45
                                It is well known that most, if not all, long term indwelling catheter users are chronically colonized with bacteria. This is NOT a UTI. Colonization should no be treated (with rare exceptions) unless it develops into a true infection. This would require signs and symptoms such as fever, chills, elevated WBC in the blood, flank pain, autonomic dysreflexia, serious leakage around the catheter, and severe malaise ("SCI Feel Awful Syndrome"). Treating colonization will only lead to you developing further colonization by more and more drug resistant strains of bacteria, resulting in having no drugs available to treat a true infection once it occurs.

                                Antibiotic choice for a true UTI must always be based on getting a urine culture and sensitivity (C&S) specimen to the lab first, before starting any antibiotic, and then checking the 72 hour results to be sure that the correct antibiotic was selected (and if not, changing to the correct one). True UTIs should also be treated as a "complex' UTI meaning that they require 10-14 days of treatment, not the 3-5 days of treatment used for ABs with "simple" UTIs.

                                Similarly use of long term preventive (prophylactic) antibiotics is not encouraged for people with SCI, including those with indwelling catheters.

                                Annual tests for stones, exams for possible prostatitis (for men) and imaging to rule out hydronephrosis or other structural problems with the urinary tract are also important for everyone with a SCI, as these may occur without symptoms, and can lead to repeated infections.

                                (Mr. Ambassador, I removed your personal e-mail address above. It is not wise to post this in a public forum like this. Leaves you open to scams and spam. You have both PMs and e-mail from the site turned on in your profile, so can request people contact you this way. Thanks!)

                                (KLD)
                                Last edited by SCI-Nurse; 05-20-2016, 12:05 PM.
                                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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