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  • IC after recurrent UTI's

    Hi, This is my first time writing a blog here. In Jan 2011, I got diagnosed with UTI's first time. I asked the doctor to send my urine for culture,however, he didn't not.He put me on microbid.I took it and got another UTI again.Again Microbid. I asked the doctor to send my urine for culture and sensitivity again. Guesss what, they found Staphyloccocus Saprophyticus coagulase negative. But the microbiologist writes on my report that the quantity of the bacteria is so low less than 50 colonies that they shouldn't be giving me anything.Can you imagine that?? When I insisted the doctor gives me Cipro for it. Also, they never did sensitivity on the bacteria. If anybody is interested, please do a research on the bacteria. It's a pretty nasty one and also hard to treat. After couple of UTI's and negative urinalysis I was sent to a urologist. When I told him about my story he was pretty shocked to see that they didn't do any sensitivity test on my urine even after so many UTI's.He even mentioned that these doctor should not practice medicine.
    Anyways he gave me stronger antibiotic and I got better. My urgency and frequency went away but I still have the burning sensation occasionally.My urine results all the time negative ( just one positive for SSCN as I mentioned earlier)
    My symptoms gets worse during my midcycle though. I am pretty sure that it's Staphylococcus Saprophyticus that is causing my symptoms. It's hidden somewhere in my bladder wall and causes burning....
    I hope if we all can do someting together and bring the researchers attention towards the drug resistant bacteria and IC, that would be great.

    I also have alopeica areata for last 20 years and it's autoimmune. I don't take any medication for my IC.Sometimes take painkiller though.

    Please consider sharing your thoughts about it..

  • #2
    Have you been diagnosed with interstitial cystitis? I know that some ICers developed IC after having multiple infections. Mine reared its ugly head following a major surgery.

    I believe there may be more than one thing that causes IC, which is making it more difficult to pin down what brings it on.

    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

    Comment


    • #3
      I also had staph and another bacteria in my pelvic area following a hysterectomy. What antibiotic were you treated with? I always felt like when I was taking an antibiotic that I was getting better. But, when my culture came back negative I would stop the antibiotic. I don't think these bacteria (or whaterve can be killed by just one round of antibiotics - I think they are very resistant and come back.
      Last edited by Snowden1; 04-17-2011, 06:34 PM. Reason: sp
      Teresa

      We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

      Comment


      • #4
        Thanks for your reply

        I got treated with third generation quinalone antibiotics i.e. levofloxacin for complicated UTI for a month. The doctors in emerg sent me home with all my symptoms of UTI because all my urine test were negative,therefore, they didn't want to prescribe me anything. I called my friend to consult a physician in India and send me medications from there. I got those antibiotics from India and my friend brought it for me. As soon I started them,my symptoms disappeared. I hate to say this that in North Amerca physician just rely on lab test and if they can't see anything under the microscope that means there is nothing they can do about it. When I saw the urologist here he said that it was the right thing for me to get help from outside the country because I got to see him after finishing my 3 months course of antibiotics.
        Also, I got urinary stone in my right kidney after I got diagnosed with IC. I am pretty sure stone is also caused by this bacteria.My stone is only 2mm and my GP said they can't do anything because it's too small. I have done so much research on this bacteria. If you guys want you can go onto this website and read about it too. it..http://microbewiki.kenyon.edu/index...._saprophyticus

        It clearly states that this bacteria sticks with the urolithium of the bladder and I am 100% sure that this bacteria is somehow capable of hiding itself in our bladder. Also, you can read about stone formation in the article.
        I get UTI only when I have sex.Also it started with a new partner...Honeymoon cystitis. Staphylococcus saprophyticus is usually on the body of healthcare professionals and my BF was one of 'em. I don't have sex and I am surviving ok now. But don't know how long I have wait to have a normal life...I won't have sex until they find out how to find this bacteria and how to treat it.
        Is there anybody else there with Staph saprophyticus??Try new meds for long time.

        Comment


        • #5
          Hi Teresa,

          I think you are absolutely right here. These bacteria become resistance to the antibiotics so quickly that we might not be able to notice it. I also believe that most people get IC after there surgeries because this bacteria is hidden somewhere in hospitals. I want to become a microbiologist to track this bacteria down. By the way I am a health care professional. So I read a lot about new stuff.

          Comment


          • #6
            Sometimes we feel better on antibiotics because they have anti-inflammatory properties. For many years antibiotics were ordered for everything, even colds (for which they aren't effective) --- which resulted in antibiotic-resistant bacteria. I don't take them unless there is verification of infection present.

            Donna
            Stay safe


            Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
            Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

            Have you checked the ICN Shop?
            Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

            Patient Help: http://www.ic-network.com/patientlinks.html

            Sub-types https://www.ic-network.com/five-pote...markably-well/

            Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

            AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

            I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
            [3MG]

            Anyone who says something is foolproof hasn't met a determined fool

            Comment


            • #7
              My Dr has prescribed me a few antibiotics &, for the most part, they seem to clear the problem up.. but then a week or so later, the problem is back again! I always thought that there must be bacteria there if the ABs are helping, I had no idea they had anti-inflammatory properties. My Drs only seem to prescribe 3 days worth which is very annoying because it's always on the third day that they help the most.. Then I stop taking them & the problem comes back (& if it is bacteria, it comes back stronger!)

              Since this began in December, I've not had a positive lab result for bacteria. I don't know if that means there's nothing there at all or if the numbers are low on their system so it's nothing to be noted. White blood cells are present in every single dipstick test though. This has led my Dr to think it might be IC or an inflamed bladder. I've been referred to a uro for more tests.

              Comment


              • #8
                sounds very similar to my ic story. i support the theory we have tiny bacteria hiding out as well. interesting article. hope you find relief for your ic soon.
                Newly IC diagnosed as of February 2011.

                Medications I'm on that seem to work:
                Zoloft- one once a day
                Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

                Failed Meds:
                Elmiron-after 4 months,digestive side effects got to be too much
                tramadol-allergic
                DMSO treatments(5-6)
                probiotics

                THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
                AROMATHERAPY-candles,incense
                Village Naturals Aches and Pains Peppermint Bath Salts
                Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

                ACUPUNCTURE/HERBS
                Significant pain relief so far.

                MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
                ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

                Add me on facebook Angela Hasic

                ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                Lord, make me an instrument of your peace;
                where there is hatred, let me sow love;
                when there is injury, pardon;
                where there is doubt, faith;
                where there is despair, hope;
                where there is darkness, light;
                and where there is sadness, joy.
                Grant that I may not so much seek
                to be consoled as to console;
                to be understood, as to understand,
                to be loved as to love;
                for it is in giving that we receive,
                it is in pardoning that we are pardoned,
                and it is in dying [to ourselves] that we are born to eternal life.

                Comment


                • #9
                  Antibiotics help

                  I agree with what you guys are saying that antibiotics has antiinflammatory properties and that helps with IC symptoms for few days, however, in my case if I take antibiotics after having sex I don't have any IC symtpoms. It's exactly like having a UTI after having sex,typical symptoms. I still do believe that there are bacterias hidden in my bladder that are causing the problem.

                  I mean antibiotics are given for preventative measures for reccurent UTI's so what the difference between my symptoms and having a patient UTI. I have that exact same symptoms as a UTI pateint does.

                  I hope if we all together try to find out what causes our symptoms and how the problem started we might come to conclusion. It's a big challange for all of us to fight with this problem but it's not impossible. Sharing our stories help

                  Thanks Guys
                  May GOD bless you all

                  Comment


                  • #10
                    Bladder biopsy

                    What gets me is that if this is true, why can't doctors see bacteria or viruses under examination of biopsies. Of course, I am not a medical professional, far from it, but it seems like it would be easy if that were the case...

                    Thoughts?
                    Maria



                    Current medication: Soul-searching

                    Vitamin D and B, Green smoothies, infrared sauna use, walking, cleansing, still seeking doctors to help find THE CAUSE of this--autoimmune or infection.




                    Comment


                    • #11
                      There are many theories out there about what cause/s of IC. I believe I probably had the disease in a dormant state until the symptoms were brought out by a major abdominal surgery (an abdominal hysterectomy with an incision from naval to pubic bone), which I now refer to as the abominable surgery. I don't think mine is related to infection/bacteria.

                      I hope one day soon a cause can be pinpointed --- and a cure to shortly follow.

                      Donna
                      Stay safe


                      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                      Have you checked the ICN Shop?
                      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                      Patient Help: http://www.ic-network.com/patientlinks.html

                      Sub-types https://www.ic-network.com/five-pote...markably-well/

                      Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                      AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                      I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                      [3MG]

                      Anyone who says something is foolproof hasn't met a determined fool

                      Comment


                      • #12
                        Re: IC after recurrent UTI's

                        I just had a culture and found that my never-ending UTI was caused by staph saprophyticus. I used to be a whiz at treating UTI's if they were caused by e-coli or candida, but staph is a really hard bug to kick. Everyone says just to take antibiotics, and I am. But the problem is this bug can grow everywhere on your body and is super-persistent. I think the IC community or UTI-community should really figure out which natural preventative treatments really work with each specific bug. Especially since one theory is that IC might be caused by an undetected infection. Everyone says just to take cranberry pills and possibly take cystex for UTI's. That works if it's e-coli. But if it's staph, I found that you can't wash it out as easily. It seems to really cling onto the bladder walls. I found that long soaks in hottubs or baths, heating pads, baking soda, garlic, and topical tea-tree oil kept symptoms at bay. Also, acid food, caffeine, sugar, and alcohol completely exacerbated my symptoms, much more so than with a normal UTI. I read that paprika is effective against it. Possibly oil of oregano??? I think it's almost irresponsible of the medical community just to suggest antibiotics every time, as methicillin-resistant saprophyticus has already developed according to a Japanese study. How hard is it for them to put staph sapro in a petri dish and test out various things on it?? So now, I'm taking antibiotics and plan to change my body wash to either a tea tree body wash or eucalyptus body wash to prevent reinfection. It's helpful to read people's testimonials for dealing with antibiotic-resistent bacteria and get a good idea of how to treat your particular issue. This link was inspirational for me:

                        http://mrsachronicles.blogspot.com/

                        Comment

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