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  • there is no cure for IC says Dr.Gary Gray

    IC is not bacterial in nature and there is no cure for it says Dr.Gary Gray in today's Globe and Mail. I don't know how to find the article online.

    It is in the health section/Urology. It's entitled "Bladder disease difficult to diagnose"

    This is the part that caught my attention. "Some IC patients are mailing their urine to the United States for analysis because they have been told that the screening process is more advanced and may find something that will easily cure their IC, but it won't"

    Well he is right about one thing, there is no EASY cure for IC. I think it is safe to say that the lab he is referring to is United Medical Lab. I of course do not agree with him on this one. I have heard from many people whose IC symptoms are cured after appropriate antibiotic treatment.

    I think I will be emailing the newspaper a response to this article. And yes I realize it is "anectotal evidence" to say that I have heard of many people who cured their IC through antibiotics. And ancedotal evidence doesn't count for much when it comes to IC. But I do not think it makes much sense either to totally dismiss a bacterial cause to IC. I haven't read studies that adequately look for a bacterial cause of IC. Most of the studies look for thing like E.Coli only.

    Surely there must have been thorough studies done that disprove a possible bacterial cause of IC. I just can't find any. All I seem to come across are more and more articles like the one I just read.

    ~plainjane
    Last edited by PlainJane; 02-20-2007, 01:51 PM.

  • #2
    Well, Plain Jane, he is probably referring to United Medical Lab, as you said. They do a broth culture that is much more sensitive than the usual lab culture and is able to isolate more species of bacteria. The broth is a nutrient that encourages some slow-growing bacteria to appear and it may take several days. The traditional labs are not willing to wait that long. Remember there is no such thing a spontaneous generation, so a species that was not there in the first place will not show up.

    There are many who are completely well after using the right antibiotics for the right amount of time if bacteria are found. The key is the culture and the sensitivity test to find the right antibiotic.

    Martha

    Comment


    • #3
      IC is a treatable disease, but it is not curable at this point. All the treatments and meds they have to help people wit there IC dose not work the same on all patients. there are patients that have tried medications, and hydros they got relief, but that don't mean it would whelp you and I. I have exhausted all meds and have the interstim, it helped my urgency greatly, but my frequency has gone up.. but that may just need a reprogram.. however I live in pain daily.
      I don't want you to be blind sided with "the cure" that no one is close to finding. If there was a cure, we wouldn't all still be searching.
      'The will of God will never take you where the Grace of God will not protect you.'

      Comment


      • #4
        Plainjane, I haven seen any studies on bacteria either.....i was able to pull up one study, but it said many had to stop treatment due to antibiotic side affects, so in my opinion this was not complete. I am one that cant stay on antibiotics due to side affects, pre IC or whatever, I could take any antibiotic out there NO problemo.!!

        Anyway, just remember H-ployri and stomach ulcers. One of my lyme dr tells me that at each appt. He says he feels that one cause of IC is bacteria and it will come out one day.

        I know even when i had very high nitrates in jan 06 Nothing was grown at quest or the hospital lab........two places. to my knowledge and ive asked other drs, bacteria is the only thing that produces nitrates, why it never grew out on culture, one said we cant culture everything!! My big question is why when they take biopsies during the hydro, dont they look for bacteria, i know with mine bacteria wasnt looked for.


        Lyme disease diagnosed 11/05
        vulvar vestibulitis diagnosed 2/06 -worst case she has ever seen..very bad.
        IC diagnosed with hydro/cysto- may 17, 2006

        Over growth of lactobicilli found 8/07 treating with doxy.

        Was able to get my first internal exam evaluation for PFD....wohoo 1/18/07:woohoo:

        8/22/07- was able to get my first speculum exam, with pap

        Strep D found in bladder with United medical labs May 2006
        2 strains of strep in stool culture 9/06
        high Strep ASO titre found 10/06

        NEW MED

        Capsasin cream-once a day for 20min,
        BUt wont lie it does burn

        About to start valium supositories for PFD

        Trigger point injections- oct 07

        Current meds:
        Neurontin- 100mg at night supposed to work up to 300mg if i can tolerate it
        Zanaflex 2mg
        IC and low oxalate diet, no sugar diet
        Xanax for appointments to help relax me since they cause so much pain

        Started PT 3/07, PT has really helped me in ways I never knew that it would

        Meds ive tried
        Lyrica
        Klonopin
        Singulair
        Claritin
        Pyridium
        Soma- can barely tolerate half a pill
        Atropine cream- didnt seem to work, although i found out I was applying the creams wrong
        Estradiol cream
        Urelle- caused worse bladder spasm and retention

        Various antibiotics for lyme which caused yeast and made the IC and VV worse

        waiting for the next chronic illness to pop up


        "Did you know?
        Every 15 seconds,
        a person is
        diagnosed with
        interstitial cystitis."
        Source: J. Dimitrakov, MD

        Comment


        • #5
          Folks... NOT AGAIN... the inevitable debate continues!!!!
          Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

          Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

          Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.






          Comment


          • #6
            Mich,

            Am sorry you can't tolerate antibiotics since there is a good chance that if you had a broth culture it would find some bacteria in your bladder. I have sponsored a study that shows that a majority of IC patients have bacteria and the microbiologist hopes to submit an article for publication. Since the mainsteam has ruled out bacteria (due to one study done at the U of MD in 2000 and published in the Journal of Urology) no one seems to be looking for a bacterial cause any longer. I wrote about this study at MD at length under the thead above "IC/PBS News - Why some people do not respond to Elmiron". My point was that the success rate for Elmiron is 19 - 38%. The study on the use of antibiotics at the U of MD showed a 48% improvement rate, even though they did not find any bacteria in the test patients and just used 5 different antibiotics for 3 weeks each in a scattershot approach. A very poorly designed study in the eyes of the researcher I showed it to. Even so they had a 48% rate of improvement. Those of us who have used antibiotics successfully know that first you must find the bacteria, then find the antibiotic that the bacteria is sensitive to, and then treat for enough time for healing to occur. Since most of us have had this infection for years it does not clear up overnight.

            If people are willing to use Elmiron with a 19-38% success rate you would think the 48% sounds more reasonable. And this was without even knowing what they were treating - but there must have been some bacteria there or there would not have been that much improvement. The placebo group improved 24% so those on antibiotics improved at twice the rate.

            So far the best culture available is the broth culture done my United Medical. And now there is a DNA test being developed at UCLA:

            http://jcm.asm.org/cgi/content/abstract/44/2/561

            I am sure so much time and money would not have been invested in this test if they felt the current lab testing was adequate. I predict much more bacteria will be found with this new test when it is available. Our research showed that Enterococcus (a form of Strep) is the most common pathogen but there are several others that can cause problems and are not being isolated by the typical 24-48 hour agar plate test commonly in use. With the broth culture they allow it to grow for up to a week since some species are slow growing.

            The analogy with H. pylori and stomach ulcers is very apt. Remember IC used to be called "Hunner's Ulcers" since in some there are ulcers in the bladder. There is definitely inflammation and that is a common result of infection. We know how long it took to convince the mainstream that stomach ulcers are caused by bacteria and the doctor, Barry Marshall, was awarded the Nobel Prize for his finding after many years of advocating for his discovery!

            The treatments in use today are only to ameliorate the symptoms, not the cause. Bacteria are very common in and around the body and it is very likely they make their way into the female bladder especially. We know most sufferers of "IC" are women. Our anatomy makes us more susceptible. We don't know why some are more susceptible than others but there are many possible reasons: trauma, hormones, genetics, certain strains of bacteria, childbirth, operations, weakened immune system,etc. They still don't know why some suffer stomach ulcers and others don't. They estimate 30% of the population has H. pylori in their stomachs but only some of these actually develop an ulcer.

            Martha

            Comment


            • #7
              Or it's equally possible that some people with IC diagnoses have a bacterial infection, with the specific pathogen not yet identified, as you say, and that others actually have what we understand as IC.

              I don't need the science re-explained to me; I have my doctorate too. I'm just positing a theory.
              Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
              Wishing you happiness and good health, and all the best out of life.

              Peace, Carolyn
              ___________________________________________________

              Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


              On the Beach with IC

              Comment


              • #8
                I can honestly say my 40 year bout with IC is over and done with..sure there is a cure, but good luck finding a dr to help you..it's called bladder removal...
                After suffering with IC for 40 years, my bladder was removed in Dec 05...YAY!

                Comment


                • #9
                  I have had this for years and thought I had an infection over and over again. My doctor is one who is very fastidious about growing out the cultures and all and I have never had an actual infection. Also, when you have an infection there are signs of it. You don't just go around with massive quantities of bacteria and not have some evidence of it.
                  My husband is catherized all the time and he always has some level of bacteria. Everyone who is catherized does. But the bladder and urine are very sterile environs and if someone had enough bacteria to cause pain and other symptoms you wouldn't need to grow out some mysterious bacteria.
                  Also, it would most likely have other visible effects such as extremely high wbc or something.
                  I don't believe in the bacteria theory at all, I do however see how having erosions in the bladder lining would cause burning and pain as well as stimulating a need to urinate.

                  Well, that's my take on it. No Doctorate but I've taken a few college classes that might be pertinent, lol.
                  http://www.TheCraftyEwe.etsy.com

                  Comment


                  • #10
                    This subject is something like religion, politics, or abortion --- people believe what they believe and no amount of discussion will bring the two sides together.

                    Inasmuch as both sides have now spoken, I am closing this thread --- we've had the same discussion before.

                    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

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                    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

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