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    UTI, no antibiotics

    Dear Nurse, Dr Wise or anybody with experience:

    Two months ago I had a UTI with klebsiella, resistant to all oral antibiotics. I had to have ertapanem through an IV for 15 days. The infection cleared, but for the first time in 11 years I really felt this could kill me.

    I was refered to a Specialist Urologist. He does not know what to do to prevent or solve the persistent UTI's problem. I dont cath, and all tests done this year and the previous ones show that I have no residue and normal pressure in the bladder, although it is a spastic one. Given the resistance problem, and the fact that I have been on every possible antibiotic, we agreed we should try to avoid using them for a period, as long as we could, so that the lining of my bladder could get a chance to heal and to give my immune system a break.

    For two months I have been doing all sort of things to avoid reinfection, such as supplementation with probiotics, vitamins, etc, plus increasing my water consumption substantially and waking up every 4 hours during the night to pee. I have been also taking a lot of D-Mannose. THis last thing has really helped since a couple of times I have felt an infection coming on, but then go away without really hitting me.

    I was really happy because in the past 2 years I had never been able to stay for so long (9 weeks) off antibiotics. I felt sooo much better....

    This weekend I went on a small trip and eat something that was not very good on a roadside place. I got diarrea and I probably got contaminated with it, although I did all could possibly could think off to avoid it. I HAVE A UTI NOW, I am absolutely sure.

    I would like to know if it is possible to wait and see if my body can get rid of it without taking antibiotics. I usually never have fever, just bladder pain and spasm, and then nausea as symptoms. Usually, all my UTI's are from e coli.

    I am really SAD that this has happened again. I feel I am fighting for my life, or at least for a chance to have a somewhat normal life. I would really like to give my body a chance to heal without the antibiotics.

    If anybody has experienced a case when you had an infection, but did not take antibiotics, please share it. Also, please tell me what you did.

    Thank you.

    #2
    Originally posted by agnes
    Dear Nurse, Dr Wise or anybody with experience:

    Two months ago I had a UTI with klebsiella, resistant to all oral antibiotics. I had to have ertapanem through an IV for 15 days. The infection cleared, but for the first time in 11 years I really felt this could kill me.

    I was refered to a Specialist Urologist. He does not know what to do to prevent or solve the persistent UTI's problem. I dont cath, and all tests done this year and the previous ones show that I have no residue and normal pressure in the bladder, although it is a spastic one. Given the resistance problem, and the fact that I have been on every possible antibiotic, we agreed we should try to avoid using them for a period, as long as we could, so that the lining of my bladder could get a chance to heal and to give my immune system a break.

    For two months I have been doing all sort of things to avoid reinfection, such as supplementation with probiotics, vitamins, etc, plus increasing my water consumption substantially and waking up every 4 hours during the night to pee. I have been also taking a lot of D-Mannose. THis last thing has really helped since a couple of times I have felt an infection coming on, but then go away without really hitting me.

    I was really happy because in the past 2 years I had never been able to stay for so long (9 weeks) off antibiotics. I felt sooo much better....

    This weekend I went on a small trip and eat something that was not very good on a roadside place. I got diarrea and I probably got contaminated with it, although I did all could possibly could think off to avoid it. I HAVE A UTI NOW, I am absolutely sure.

    I would like to know if it is possible to wait and see if my body can get rid of it without taking antibiotics. I usually never have fever, just bladder pain and spasm, and then nausea as symptoms. Usually, all my UTI's are from e coli.

    I am really SAD that this has happened again. I feel I am fighting for my life, or at least for a chance to have a somewhat normal life. I would really like to give my body a chance to heal without the antibiotics.

    If anybody has experienced a case when you had an infection, but did not take antibiotics, please share it. Also, please tell me what you did.

    Thank you.
    Agnes,

    I would have a UTI every week if not for Uroquid Acid pills and CVS Max Cranberry pills.

    When I have a UTI I take 4 Uroqiud acids and two CranMax pills every 4 hours until UTI is killed off.

    Then for preventive maintenance, I take two of each morning and bedtime.

    Get a doc to prescribe Uroquid acid (and a lot of it) as soon as possible.

    I thank God that Ami turned me onto them here.
    And the truth shall set you free.

    Comment


      #3
      agnes, I've had an e-coli UTI since April, while in rehab (2nd time) for three monthe to get my femur fixed, my physiatrist would not treat the UTI (I'm asymptomatic -- no fever).
      After I left my GP put me on a 20 day course of Macrobid and it stopped for three days and then came back. Intravenous they say is the next step and they really don't want to use that option (want to keep the big guns for the serious situation).

      I tried the D-Mannose for two months now and for me, it is not working.

      SCI-Nurse (KLD) suggested that Uroquid was not a cure in 2004 -> /forum/archive/index.php/t-7713.html, maybe things have changed. And other people also swear by it, I guess it all depends on the individual -- either it takes or it doesn't.

      I would love to get rid of my UTI (makes me cranky, the smell and all) and I have a Cystoscopy scheduled for March 2008. Who know, maybe the URO will find something.

      I'm with you in this rotten situation and can only empathize with you, sorry!


      .
      Han Tacoma

      ~ Artificial Intelligence is better than none! ~

      Comment


        #4
        How about asking this new doc about an antibiotic bladder flush? Beats having the stuff all through your body. And then ask if you might have stones and also precautions you can take before and after sex if that might be causing some of the utis..
        Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

        Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

        Comment


          #5
          Thank you for your advise Nodecaf, Laozi and Sue... This is really a rotten situation.

          Just a couple of days ago I was all full of hope, counting the number of days on my calendar without antibiotics.. Actually, last night I woke up at 4AM to pee and could not go back to sleep. I realized that if someone asked me whether I prefered to be able to walk as before OR get rid of the bladder problems, I would probably choose to get rid of the UTIs since that is the part of the SCI that affects my life the most!

          Sue, thanks for the suggestions. I will mention the bladder flush, it sounds good. Let's see what he says.

          Comment


            #6
            I am sure that once your white blood cell count is elevated enough, it is not a cure. But the proof is I haven't had a UTI for about 2 years now, and that is the only thing that has changed.
            And the truth shall set you free.

            Comment


              #7
              Let me know Agnes. After my first kidney infetion last year and 2 IV antibiotics for 5 days my right shoulder tendon was shot. After a lot of down time I can finally use it again without pain. Side effects of antibiotics reach well past stomachs and resistance. Most docs don't like flushes but if you have a decent bladder capacity I think it can't hurt to try. Oh, and taking a drug like ditropan or detrol so spasms don't send infected urine back up into your kidneys during a flush.
              Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

              Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

              Comment


                #8
                Hello, I would like to post an update on this situation, just in case it may be useful for someone in the future. As always, somethings may work for some people, and not for others. I also think something may work only sometimes.., when the bug is e coli and you catch it soon enough.

                I got the result of the culture done on a sample taken last Thursday morning. It had e coli, as I suspected. A sample taken 2 weeks ago only for control had no bacteria in it.

                Since my last UTI was caused by a resistant bacteria, now I have to wait for culture results before taking any medication. Since I was waiting I decided to give D-mannose a serious try.

                I took a loaded teaspoon EVERY HOUR in a glass of water for 2 days. I did not drink any additional water in order not to dilute it. It was very difficult to keep the schedule, so I actually had to write it down in a piece of paper and cross off the doses that I took. At night, and I think this was crucial, I woke up every 3 hours to pee and take more d-mannose. The mannose gave me diarrea, so I also took Imodium while awake, every 2 hours.
                The bladder spasms and leaking disappeared after the first day. The pain stopped after the second day. My urine was clear after the second day. I continued to more days to take d-mannose, although not very regularly. I also woke up once during the night.

                I feel I dont have the infection anymore, but I may still have it. I am sending another sample at the end of the week to confirm.

                There is a caveat though: since the body was fighting the infection, I felt really bad for 3 days. I was used to take some antibiotics at the beguinning of an infection and forget about it, just continue taking them and go on with my normal life. This time, I had to be in bed for most of the time. I think I had fever the first day, and it was very difficult to eat. I feel still very weak and have nausea.

                Since taking antibiotics all the time is not going to be an option for me anymore, the D-mannose may work sometimes. However, I am very worrried since it means I may have trouble at work (can not take sick leave as often as it would require). The whole thing also requires that I am well enough to prepare the stuff and nurse myself.

                I will post the result of the next culture when I get it ( in about 10+ days).

                Comment


                  #9
                  Agnes,

                  As you probably know, a positive urine culture alone does not equal a UTI.
                  Please review this post:
                  http://www.ahrq.gov/clinic/epcsums/utisumm.htm

                  Given your history of UTI, it is important that you keep track of other accompanying symptoms when you think you have a uti such as fever (though you said you don't always get one), increased spasms, elevated white blood cell count (ordered by your doctor), change in spasticity or change in your mental status, etc.

                  If you have these other symptoms, then a UTI should be treated. In that case, your UTI would be treated based on the particular bug and medications that are specifically sensitive to that bug. Uroquid and other medications would not treat the infection.

                  If you have some feelings of impending UTI but without these above symptoms, you can try those things mentioned above to prevent a UTI from coming on (uroquid,d-mannose,etc).

                  I know this is review for many people but by doing these things, one can cut down on resistant bacteria and increase the likelihood of antibiotics to work for you when a true UTI surfaces.

                  Thanks for keeping us posted.

                  AAD
                  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


                    #10
                    Thank you Nurse, you are right.

                    I just wish all the GP doctors I have had in the last 10 years knew what you know, and thought about it before sending me home with tons of antibiotics of various kinds to take, without doing a culture..!!

                    Too late now, I guess.

                    Comment


                      #11
                      Agnes, thanks for sharing. I think I will give d-mannose another try. I was taking the one teaspoon a day dosage, so I'll increase it to four times a day (I don't want the diarrea). It's just that the stuff is terribly expensive and not covered by my drug insurance.
                      ...but if it works, I'll reduce my food bill <heh>

                      Cheers!

                      .
                      Han Tacoma

                      ~ Artificial Intelligence is better than none! ~

                      Comment


                        #12
                        Laozi, I hear you, the stuff is EXPENSIVE!!.. Try shopping around on the Internet. I live in the UK, and one of the few UK providers sells it for 18 pounds per 50 gr.... I am broke.

                        Take one full teaspoon in 1 cup of water, and then keep it in your bladder for 1 to 2 hours without drinking anything else (it dilutes it). After you pee it, then take lots of water to flush your bladder.
                        I continue taking it before going to sleep, wake up after 4 or 5 hours, pee and then drink 2+ glasses of water. It is a total pain in the ass to wake up at 3 of 4AM, but a UTI is a bigger problem..

                        PS: My bladder is feeling very good today, went back to work yesterday, worked from home on Monday..

                        Comment


                          #13
                          I forgot: do not take the d-mannose with food.

                          Comment


                            #14
                            can anyone advise please

                            Hi I don't know how to use this forum or find the right thread but maybe someone can help. 5 years ago my mom had spinal surgery for a tumor-she had two but one was benign and left alone. right after the surgery she had a neurogenic bladder and had (very hard) to learn how to cath. she has been cathing with an intermittent catheter every day (however many times)
                            she got frequent uti's -i don;t know if in the beginning they were symptomatic-i think not-but at least I remember one where right away she was given antibiotics. she has been given many many antibiotics since then to treat the uti's and now her doc wants her to have an operation -i think an ilul conduit because she has become antibiotic resistant. she is in her late seventies and a very with it youngish mom thank G-D. In case I lose this thread could the nurse or someone kindly email me at simplefaith2002@yahoo.com. though her doc said that this is an easy surgery -no surgery is easy & we are anxious. i feel bad that i haven't done more to get her on a regiment of diet & other stuff to prevent the uti's. are they preventable with neurogenic bladder? anyway all advice is appreciated

                            Comment


                              #15
                              I will try to email this to you. First of all, you should not fel guilty. You and your Mom have never had to deal with anything like this.

                              Depending on her fluid intake and how frequently she cath'd, the infections may or may not have been preventable. They are the number one problem for people who have had the problems your Mom has.

                              Before your Mom has any surgery, I would recommend a couple of things. Write down all of your questions and schedule an appointment with your Mom's doctor. Ask all of them and make sure you are comfortable with the answers. Then, I would tell you to get a second opinion. Most physicians do not get offended with this and many recommend it. Take all of your Mom's test results with you.

                              The other thing that would be helpful is to know test results - has she had any urodynamics on? Renal scans? IVP?

                              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.

                              Comment

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