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Possible Cure for IC????

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  • Possible Cure for IC????

    Hey Gals.
    I found some interesting info on the internet about IC. This woman named **** **** who is a RN who said she worked along side a microbiologist named Paul Fugazzotto Ph.D who claims that IC is caused by an actual bacterial infection that regular cultures do not pick up. They say that long term antibiotic therapy had cured a ton of women.
    Have any of you ever heard of this and is it legit? Just wanted your opinion on this.
    Thanks
    Jen
    Last edited by ICNDonna; 04-24-2007, 04:43 PM.

  • #2
    no this is not true, there is no known cure for IC. If there was we all wouldn't be begging for help.. I am sorry you got your hopes up.
    'The will of God will never take you where the Grace of God will not protect you.'

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    • #3
      It's a debate in the IC community - and one that's been discussed here many times over the years. Some here do believe in this theory while others do not. Both sides feel pretty strongly about it.
      Kim

      Diagnosed August 2001

      Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


      Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

      I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

      *****************************

      “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

      “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

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      • #4
        Thanks for the opinions. I am a very skeptical person when it comes to alot of things, and was just wondering if any of you heard about this. I talked to the woman who wrote about this study and she said she herself had IC for 11 years and after finding out what bacteria she had in the bladder doing that special culture, she took some specific antibiotics long term and has been IC free for 16 years she says.
        She also said that many other patients she has been treating are better.
        Like I said, I am a skpetic when it comes to alot of things, but also dont like to disregard things either. I know they say there is no cure for IC, but I absolutely disagree with that. There is a cure, but just that no one has found it as of yet. There is a reason for IC and a cause. Hopefully one day we will be able to find out what they are so we can get rid of the IC.
        The bacteria theory makes sense in some ways. I think personally that if this is a bacteria causing the IC, that probably everyone has this bacteria in them normally, but just that people who have a glinch in their immune systems maybe react badly and therefore maybe the bacteria has the upper hand and our bladders are not able to fight it off and we end up with IC. This is just a theory though.
        There are so many theories though. Thanks for the opinions, I appreciate it.
        Jen

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        • #5
          I read last year (not sure where) about a gyno doc who put I think antibotics in the uterus or something. I asked my Uro about it and he said that would not cure the IC and having it done would be very painful. They have to dialate it somehow. I don't remember it all but I have read stories about stories about cures for this. Would always get my hopes up and what a let down when I found it was not true. I don't even bother to read anything that says it is a cure for this or anything else.

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          • #6
            You can read about the antibiotic theory in the Patient Handbook. It's been around for a long time. Some people feel it has been the answer for them; others have had disastrous results from long term antibiotic therapy.

            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.

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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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            • #7
              I am thinking maybe the cure is going to be different for each person. I guess it all depends on what the cause is and treating the cause will be what cures the IC. Hopefully one day there will be a cure for each and every one of us. It is just so unfortunate that urology is so behind on things. I think in the end, it will have to be up to us to do the research and help ourselves. It usually works that way.
              Jen

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              • #8
                I know there are a lot of schools of thought about causes of IC. I am sure more could be done to help if we knew the why. But until that day comes, we need the research on effective treatments. Sort of like a house on fire and the fire department pulls up and watches the buliding burn questioning what started it...What we need are more hoses to put out the fire. Let's find out what stops it and then look for the causes after the fire is under control.
                Last edited by L. Thomas; 04-24-2007, 06:50 PM.
                TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
                My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

                Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
                Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
                I post to encourage and offer total support for rescue instillations.
                Find me on facebook: L. Clark Thomas
                Louann

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                • #9
                  Thanks Donna for letting me know that.

                  I have my doubts they will find a cure. The IC started differently for all of us. Some from infections, some from operations, having children and some for no known reason. If there was one reason only on how it starts then they could find a cure but thank goodness they have found some things that help. Just need to find some more for others.

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