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    Urgent: UTI won't go away after almost 2 weeks--please help!

    Hi everyone,

    My name is Emily. I did a post in the introduction thread a few months ago but I have not been able to be back on the Board since.

    I am sorry to bother you out of the blue, but I need help!

    My PCP diagnosed me with a urinary tract infection on Wed. July 31. He prescribed 5 days of Cipro and a drug to help me with urinary pain.

    I have been having trouble with urinary urgency and hesitancy for a few months. It’s hard to pee all the way, to be blunt. So I did not know I had an infection until July 31 when I had a fever and went in to see my PCP.

    I finished my Cipro on Sunday, August 4, but I still was having trouble peeing, I still had a low-grade fever (about 99.5-100), and my MS symptoms were still exacerbated.

    Monday August 5 I felt terrible. My fever was 101 and I was having a terrible time peeing. I also felt nauseated and had diarrhea and back pain. I went back to see my PCP and he tested my urine again and prescribed 7 days of Macrobid and more of the pee pain drug. He had the urine cultured and when I called his nurse said there was “no growth” and to keep taking the Macrobid and I would be fine.

    It’s now Saturday August 10. I have been taking my Macrobid and tomorrow is the last day. I still feel bad, though. I still have a low-grade fever every day, and I’m still nauseated, and it’s still hard to pee. I ran out of the prescribed pee drug so I got an OTC one and it helps. I called my PCP’s office yesterday and talked to the nurse again and she said to finish the Macrobid but if over the weekend my fever spiked or I started vomiting or I couldn’t pee at all I should go to the ER.

    None of this stuff is happening, but I’m still sick and uncomfortable and I am getting really worried. This seems to be going on too long. I live in a small town/rural area, and my neurologist is 2 hours away.

    How worried should I be? Do you know why this might be happening? And do you have any advice about what I should do next? Having MS is hard enough but with the ongoing UTI and the antibiotics I’m getting really fatigued and stiff.

    If you can help, please write me back! I want to get better! And I hate being this worried!

    Thank you so much, Emily

    #2
    Emily,
    you need to make an appointment with a urologist, and you need to do so quickly. Two weeks in my opinion( I am not a doctor!) Is far too long. Cipro and macrobid aren't the only two prescriptions I have taken for a UTI.

    From the sounds of it, you may have a neurogenic bladder ( does not fully empty).

    A UTI, left untreated, can move into your kidneys. Keep us posted. Good luck to you.
    hunterd/HuntOP/Dave
    volunteer
    MS World
    hunterd@msworld.org
    PPMS DX 2001

    "ADAPT AND OVERCOME" - MY COUSIN

    Comment


      #3
      I use a powder called D-mannose mixed in some apple juice to help my bladder rid itself of the bacteria that seems to hang around my bladder. I buy it at the Vitamin Shop.
      I also eat relatively low amounts of meat protein, about 15 oz. daily. I hope this information will help you. Good luck

      Comment


        #4
        UTI

        I have a tendency to get UTIs and my neurologist showed me how to massage my abdomen after urinating to void my bladder; put me on cranberry supplements and had me take antibiotic after sex to get rid of bacteria. Also, drink lots of water. All have helped reduce the UTIs. Do see an urologist because they did a sonogram of the bladder and put me on different antibiotics.

        Comment


          #5
          thank you

          Thank you so much hunterd, mswoman, and JerryD.

          When I first learned I had the UTI I did some research and it does seem like I have a neurogenic bladder. I learned there's a drug called Flomax. And there's intermittent self-cathing. I will look into massaging my bladder and the D-mannose.

          I looked up urologists and our town only has one and he does not have a very good rating on the health grades (1.8 out of 5). But I was going to call on Monday to see if I could get some help soon.

          Should I wait the weekend and hope this urologist will see me on Monday? Or go to the ER even though I do not have the symptoms my PCP's nurse listed: I am not throwing up, and I can still pee, and my fever is pretty mild though it goes up throughout the day (it's 100 now on ibuprofen). My back hurts so much it is hard to stand up straight. My husband took my daughter to the park (she is a big 6 year old girl now) and told me to rest and just keep taking the Macrobid. Arghh.

          Do you think I should go to the ER? Or wait til Mon? I guess that is my question. I would like to not be so sick. Once whatever is happening is cleared up, I want to see my neuro and get a urologist referral and try to figure out how to treat this, because it's been going on for months (the pee problem, not the UTI). I thought I was just going to be uncomfortable but if it's going to lead to this, I've got to take care of it somehow.

          Thank you for being here. Emily

          Comment


            #6
            Emily - I am so sorry about all you are going through! If it were me having these problems, I'd probably be heading off to the ER. The part about your back hurting so much that it's hard to stand up straight would be a red flag for me.

            But that is just me. I'd rather be over-cautious than underestimate the problem and pain.

            I hope you feel better soon. Let us know how it goes - OK?
            1st sx '89 Dx '99 w/RRMS - SP since 2010
            Administrator Message Boards/Moderator

            Comment


              #7
              Originally posted by Seasha View Post
              Emily - I am so sorry about all you are going through! If it were me having these problems, I'd probably be heading off to the ER. The part about your back hurting so much that it's hard to stand up straight would be a red flag for me.

              But that is just me. I'd rather be over-cautious than underestimate the problem and pain.

              I hope you feel better soon. Let us know how it goes - OK?
              I totally agree. a fever and a backache after being on antibiotics as long as you have, warrant an ER trip to make sure the infection has not spread to your kidneys.

              the reason your culture came back clean after the culture is probably because you'd been on an antibiotic. that can skew the results of a culture. In the ER they'll be able to figure out if the infection has spread to your kidneys...and that's important.

              If not they'll let you go with some instructions and possibly more meds...and you should try to get in with a urologist as soon as possible.

              I'm not trying to scare you but UTIs can spread from your bladder to your kidneys, and when that happens it's a much more urgent problem.

              Hope you get some answers.

              Comment


                #8
                Emily,

                I also think you need to go to the ER! Your back pain and persistent fever, despite 10 days of antibiotics, could very well mean you never did kick that uti. As rdmc stated, the use of antibiotics often skews results. You need to be very careful about becoming dehydrated, as well.

                I've had uti's that quickly turned into both kidney infections and sepsis. They really are nothing to play with.

                I hope you find a urologist, the sooner the better.

                Hope you feel better, soon!
                Kimba

                “When you change the way you look at things, the things you look at change.” ― Max Planck

                Comment


                  #9
                  I agree. Worry about your neurogenic bladder later. Get yourself to the ER ASAP. Don't wait until Monday. It's unlikely to get better over the weekend, if you've been on antibiotics for ten days and it's getting worse.
                  Good luck.

                  Comment


                    #10
                    thank you--will go to ER tomorrow AM if not earlier

                    Oh Seasha, rdmc, Kimba22, thinki'mjob, and everyone, thank you!

                    I dutifully took my Macrobid and slept all yesterday afternoon and into the evening. When I woke up I felt better and my fever was only 99. I could pee because I was using the OTC pee drug. I was cheerful, even, and watered our garden with my daughter and read her stories (she loves The Boxcar Children) and put her to bed.

                    But I woke up today with the same back pain. Bad nausea and gagging (ewww). Hard to stand up straight, very difficult peeing even with the OTC pee drug, and fever is right now up to 100.5 on Tylenol and ibuprofen. I tried to sleep again this afternoon in the hopes that it would make it better, but I woke up feeling just as bad.

                    If I could, and weren't afraid, I would go to the ER tonight with my husband. He seems to see now the seriousness of the situation.

                    But our daughter will be at her summer day camp tomorrow morning, and I am best in the morning, and I can defend myself at the ER when I am at my best. I know that sounds strange, but the last relapse I had involved brutal vertigo and vomiting, and it took the ER two hours to give me a shot of Zofran, which had been ordered ahead of time by my doctor, and he sent me in to be admitted right away, and I couldn't walk because I was so weak, so my husband asked for a wheelchair, and at admitting we got caught up in bureaucracy and red tape and I threw up on myself and then realized the only way I could stop throwing up was if I put my head between my knees in the wheelchair. My husband gets so frantic and worried and overwrought and I can't help him and be articulate and aware and explain when I am that sick.

                    So I figure if we go tomorrow morning I will be able to take care of myself, and if it takes them hours to help, I'll be able to insist (kindly) upon it.

                    So I'm going to do my best to take care of my little girl tonight, and then I'm going to pack a bag and cancel my Monday appointments, and go in to the ER Monday in the morning ready to get myself some help, and I'll call a couple friends for childcare in the evening if I need to stay and need my husband's help.

                    Thank you soooo much for what you said about the antibiotics and the culture. It is so good to know. I hope that they can help me.

                    I told my husband, I want a catheter so bad--which I think is a big sign. After I gave birth to my daughter I couldn't pee, and the nurse gave me a catheter, and I remember the glorious relief of having an empty bladder. If I can just get them to empty my poor burning, aching bladder that's been squeezing out dribbles of pee for days (sorry for the graphic description) the ER and all its complications will be well worth it.

                    Thank you so much. I am going to show what you said to my husband. He is a good man, and he's been with me the whole 8 years I've had MS, but he is a "yes doctor" type. I am not condemning him for this but I have had too many tough experiences following the dr's advice to the letter and not listening to my body. He has great respect for people with MS and their voices (as do I) and your responses will help him understand that I need to go the ER.

                    I will let you know what they say, and thank you with all my heart.

                    Emily

                    Comment


                      #11
                      Emily,

                      I understand your concerns about the ER, but the sooner you get there, the better!!! Seriously, the longer you wait, the greater the potential for a more serious infection and complications. Then it will be both harder to treat and take longer to treat whatever may be wrong. You may end up on IV antibiotics for several days.

                      Once you go in, one of the first things they'll do is drain your bladder. The longer your retaining urine, the more risk you are creating for bacteria to grow.

                      I have kids, too, so understand it's not always easy to find someone to take care of them. But, please, get in to the ER ASAP!

                      Let us know how things went.

                      Be well
                      Kimba

                      “When you change the way you look at things, the things you look at change.” ― Max Planck

                      Comment


                        #12
                        I say "ditto" to Kimba's post!!
                        1st sx '89 Dx '99 w/RRMS - SP since 2010
                        Administrator Message Boards/Moderator

                        Comment


                          #13
                          your prolonged problems

                          I hope you hav3 been to ER by now.

                          There were MANY things through the thread that sent up HUGE red flags for me!

                          Your urine should've been cultured PRIOR to getting ABx.
                          Cultures after meds is STUPIDITY! !!
                          Your persistent temp....GIGANTIC red flag!

                          I was wouldn't be surprised if you have pyleonephitis. (infected kidneys), but, I was thinking mose sepsis.

                          Going forward. ..I 'force' myself to empty my bladder, but I have a set "shedule" ...I take triple strength cranberry supplements morning and night. I have avoided UTIs for years where it was a weekly occurrence before.
                          Let's see what happens, but im here to help!
                          Disabled RN, Cardiac Intensive Care
                          Dx'd 11/03/2005, Sx's for 15+ years prior
                          STOPPED DM's 10/15/2010, last one, Tysabri

                          Don't ask for a better life, ask to be a stronger person!

                          Comment


                            #14
                            so sorry! I screwed up. Still in trouble--and scared.

                            Hi everyone,

                            A warning—this post is very long. My big questions are in bold-face type at the end—so please feel free to skip there.

                            I am so sorry. I am still in trouble, and scared.

                            I went on Monday the 12th to see my PCP because I thought he might order some tests at the hospital and I could avoid the terrible ER situation I’d experienced before if I had his recommendation.

                            He would not see me because they were overbooked, even though I called ahead and the receptionist said to come right in. His nurse saw me. She was very nice. She did a “UA” and said it came back negative. I said I still had a fever and the back pain was getting worse and I still couldn’t pee all the way, and that I had diarrhea and nausea. She said some of that could be side effects of the Macrobid and to “wait a few days” and take ibuprofen for the pain. I asked if I could get a referral to a urologist and she said she would call me at the next day to confirm she’d sent the referral.

                            But on Tuesday my back pain was so terrible, and I have that constant “pee tickle,” and my urine, when I woke up, smelled so intensely of body odor (sorry to be so graphic, but I have never experienced that). Still fever and diarrhea and nausea. So I called my PCP back and his nurse called me and said he had ordered a CT scan of my kidneys and abdomen and that I should make an appointment.

                            I got in today (Wed. the 14th) and got the scan. I had a 100 degree fever and nausea, diarrhea, the pee tickle, the foul urine odor, and the back pain so that it’s still hard to stand up straight. The lab tech said “it hurt to look at me.”

                            I got the scan and asked when the results would be in and she said my doctor would get them in an hour. So I came home and my husband and I counted the minutes while I lay on the couch with a heating pad on my back. I called exactly an hour later and the receptionist said my doctor had left for the day.

                            So I called the hospital and the same lab tech who said it hurt to look at me said I could come in and sign a release and get the report. So my husband and I drove back in with me still in a fever and in pain and we got the report and the results were completely normal.

                            So we drove home and my husband said “I don’t know what to do; these tests are normal; your UA is normal.” He said he believed me that I was sick but that he was confused.

                            The problem is, I am still so sick. Monday night and last night I woke up in the night to pee, and of course I could barely pee. I staggered into the bathroom both times and turned on the water and sat with my head on my knees and counted to 100 and a little bit came out. Both times I got back in bed and I was sweating and my back hurt so much I could not get in a comfortable position. I ended up curled up in a ball and whimpering and only half falling asleep.

                            So I was diagnosed with the UTI over two weeks ago, and I’ve been through a course of Cipro and a course of Macrobid, and I do not get better. Last night I just started crying because my little girl made me a snack of pretzels and juice box and a tootsie roll for my “treat” on a paper plate. She remembers the last time I had an UTI (which was taken care of with Cipro) that I was nauseous and ate pretzels, and she told me that she added the juice box and the Tootsie because those were two of her favorite things.

                            I don’t know what to do. My husband says not to call my PCP given his behavior. He says that tomorrow he will take me to urgent care. We are hoping (how weird is this?) that the UTI test will come back positive this time and then I can explain I’ve been on two rounds of oral antibiotics and then the urgent care doctor will send me to the hospital.

                            But I am scared that the Macrobid did mess up the UTI test results. My husband bought me an at-home test and I took it and I test very, very positive for something called leukocytes but very, very negative for something called nitrates.

                            I am sorry to bother you again about this, when you already have given me such sound and compassionate advice and I went to my PCP.

                            But my question is: How can I get help? I need help. This is over two weeks of increasing UTI symptoms, and my MS symptoms are exacerbating. But I am afraid that if the UTI test comes up negative again no one will help me. Do you know of any way I can get someone to help, even if the tests come up negative? Or of tests they might be missing? Or how long the Macrobid and Cipro might interfere with an UTI test?

                            Being this sick this long, I am starting to feel very lonely and worried I’m “losing it.” I keep telling myself I cannot “make up” a fever or body odor urine no matter what the tests say. But no matter what I do I just keep getting sent home.

                            Please help, if you can.

                            Emily

                            Comment


                              #15
                              Emily: I think you need to skip the urgent care and go to the ER tomorrow. They have better equipment and abilities to diagnose the problem all in one spot and all right away (meaning nothing has to be sent away for a day or so). You still have white blood cells in your urine, which means you still are fighting an infection somewhere in your urinary tract system. Taking the antibiotics still is skewing the effects of the test. When you go to the ER they will check for everything, and they will understand about the ABX thing. Your fever needs to be taken care of.

                              Let us know how it goes, OK?

                              Lisa
                              Moderation Team
                              Disabled RN with MS for 14 years
                              SPMS EDSS 7.5 Wheelchair (but a racing one)
                              Tysabri

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