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Anyone else have chronic UTIs?

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  • #16

    wow intresting info.


    • #17
      I usually get 1 UTI a year. Antibiotics help.
      Many years ago (I am dated myself) they use to say Macrodantin was not good for someone with IC. There were 3 antibiotics they said not to take. If you have Larrian Gillespie's book I believe it is in there.



      • #18
        Biofilms and bacteria

        I just read an interesting article in the ICN Newsletter The Optimist. This article discusses a presentation at the latest American Urological Association meeting on Biofilms and UTIs. The speaker was J. W. Costerton, PhD, of USC. He discusses the fact that they are studying the formation of biofilms in bladders and these can hide bacteria and protect them from treatment by antibiotics. So they are looking a ways to break up the biofilms or to prevent them in the first place. Biofilms are already known to be a problem in BV.

        The article points out that this phenomenon of biofilms may lead IC researchers to take a second look at the possible involvement of bacteria in IC. The mainstream have dismissed bacteria because they have not been able to find a consistent species of bacteria in chronic urinary tract symptomatic patients. Now there is better testing and many of us for years have used broth culturing to find bacteria - mainly Enterococcus. It is hard to change the thinking on the connection between bacteria and IC but more and more evidence is leading in this direction. The huge EPIC study at the U of MD has found over 50% of patients questioned said their symptoms started with a UTI. Now that biofilms have been found in bladders this can explain why bacteria are hard to culture and why people have recurring symptoms.

        The challenge is to break up the biofilms in order for the antibiotics to treat the bacteria and that seems to be the next step. Still many remain to be convinced that bacteria are a factor. We now know there are better cultures at both Quest labs and LabCorp but most doctors do not seem to know about them. Patients have had to learn about these on their own. I think with time the evidence will be there even if the patients, themselves, have to lead the way.



        • #19
          I might as well add my experience for what it's worth. I saw my urologist today. He took me off antibiotics last Tues. and had me come to the office for a catheterized urine specimen on Monday. He decided to go all out and check for bladder TB, viruses, bacteria, and fungi. I went in today for results. The culture wasn't quite done because of the extensive testing, but the bacteria had come back gram-positive. I'm waiting for full test results and antibiotic sensitivity. He'd also received a letter from UAB--their Infectious Disease drs. said they have no treatment to offer for chronic enterococcus at this time. Wake Forest Infectious Disease drs. also said the same thing. I've been researching enterococcus for almost 4 yrs. All antibiotics are doing is suppressing the bacteria. Enterococcus has become virtually resistant to amoxicillin, cipro and macrodantin. I think it's vital to be cultured for all bacteria if you have chronic UTIs. After reading the posts on this board, I've come to the conclusion that few urologists look further than e.coli. My dr. finds enterococcus in other patients, but he said he normally gets rid of it. Maybe early detection would help. I feel that the combination of a damaged bladder lining and underlying immune issues that some of us have cause complicated bacterial infections that can not be successfully treated at the present time. I've read Dr. Warren's comment in Oct. 2000 that low-level bacteria can persist in the bladder and cause a low-level inflammatory response. He further stated that when you have a flare, work with your urologist and microbiology laboratory and identify even small numbers of organisms in the urine and treat those organisms with antibiotics. How many women diagnosed with IC or chronic UTIs get that kind of treatment? Martha mentioned that the EPIC study is taking another look at bacteria. I hope our drs. can be educated to look beyond the dipstick and agar culture so that patients with enterococcus infections don't slip through the cracks like women and men with IC did for so many years. No one really knows what causes IC. There are a lot of theories. It doesn't really matter if enterococcus causes IC, is a result of IC, or you have chronic cystitis caused by bacteria such as enterococcus, you deserve a comprehensive work-up for all bacteria. Good luck to everyone dealing with this frustrating problem.



          • #20
            Ginny - Nitrofurantoin, is an advanced treatment for most bacteria, I have. Makes my bladder feel better but not my stomach or myself from feeling extremly drained. I don't have that book, you mention and have never came across recommendations not to take the drug, it's interesting...

            Martha - That study is so interesting and I am glad it finally came out in the ICN Newsletter, since many people are skeptical of the connection and also discouraging when you wish to pursue further testing. I hope some answer shows up on how to treat biofilms and also, there could be a natural way to treat it, a herb of some sort? I'm hoping..... After all, most RX and OTC medications, were discovered from studying herbs but when science evolve, chemicals and other approaches are taken, leaving behind herbs.

            Dbritts - I'm really glad to hear your doctor was willing to go all the way to check for everything possible that's causing your symptoms. I wish mine did, but instead they told me I don't have an infection, though the culture low colony count of mixed bacteria. I was told, I don't have an infection.....I "like" when you put your trust in them and they just, lead you in the wrong direction......
            You mentioned, he treated Enteroccoccus before, what medication did he use, do you know? Have you got your results?

            I recently, wrote to the Head doctor of Rehabilition Centre, to ask about Myosfascial Release and Acupuncture and after stating, that I went on for four years with bad testing and several different diagnosis and have been discharged from several doctors. I mentioned, I am finally getting proper testing from United Medical Centre and being treated by **** ****, but instead his first response was to look for a good urologist and find out how I got this recurrent infection.....and follow their treatment plan.....

            What the helll...really...goodness sake for years, I was thinking I'm insane (didn't know anyone else who had it), because one doctor told me, I was probably anxious and thinking too much and that was causing me to go and my family doctor told me, I have to live this way and then referred me to a Gynaecologist and she gave me something to control the bladder and that didn't work.....I think it made me retain. Then, I go see a Urologist and she just sent me back to Gynaecologist and then I went to see another Urologist and she did some test and then wanted to discharge me right away and I had to ask her to do a cystocopy since she was ready to let me go, at the third appointment, telling me she can't do anything for me and that I have an overactive bladder. She gave me one drug, which was Tolterodine I think and I was taught how to do Kegel exercise and ended up hurting like hell holding back my urine till I reached 500cc, since I really had an infection, which she said, I don't. Then, she refers me yet again, to a Gynae..... What the hell really....I am being tossed between Gynaecologist and Urologist. I then decided to go see a Urogynaecologist, so they can stop passing me around, and she wanted me to repeat one test several times, though she clearly saw I do have recurrent infection and also told me I do, at this time I found **** **** and she knew what she was doing. This doctor though, she diagnosed me right and wanted to try long term antibiotic, she didn't put me on anything to help with yeast...I don't understand why they don't care about yeast, when they prescribe antibiotic.

            Man, seriously....damn mainstream method and their unprofessional practice!