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  • Anyone With Success?

    I just read a very interesting reply to a thread that I posted about results of my broth culture. The question was: has anyone actually been cured after antibiotic therapy as a result of a positive broth culture?

  • #2
    I just wrote about my success with antibiotics under your "Check This Out" thread.

    Aline
    History:
    * Recurrent UTIs (sexually related) beginning April 2006.
    * Diagnosed with HPV & mild cervical dysplasia, Aug 2006.
    * Diagnosed with possible IC, urethral polyps & possible Hunners ulcer in Jan 2007.
    * Had broth culture done at United Medical Labs, Feb 2007, Group D Strept (enterococcus) found in regular agar culture & broth culture. Second broth culture Oct 07 (agar culture negative but entero in broth).
    *Vulvar vestibulitis symptoms while on Augmentin (disappeared after I stopped taking it)

    Prescriptions:
    Amox & Augmentin for 4 months.
    Nitrofurantoin for 4 months.
    Diflucan or Nystatin if needed.
    Nordette 30

    Non-prescriptions:
    Femdophilus, acidophilus, Vitamin A, vit E, folic acid, vit D3, selenium, oregamax, panax ginseng, shiitake/maitake, coleus forskholi, cystex if needed, calendula gel for vulvar fissures (this stuff is great!)
    .

    Comment


    • #3
      There are some people who feel they have been "cured" by one therapy or another, but I also know people who have had remissions for five, ten, or even fifteen years, only to find that eventually the symptoms return.

      I read a message once about a person who said she had been in a remission for two years, at which point she is certain she is cured. I have had a remission that lasted almost two years, but the IC symptoms returned.

      As far as I know nobody has yet come up with a cure, but there are treatments that will help keep the IC under control. I do well most of the time, but definitely have not been cured.

      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


      • #4
        What was the reply you got? Was it from me?

        Comment


        • #5
          I'm cured....

          It's official. I've been symptom free for 15 months, and my URO just took the diagnosis of "IC" off my current medical conditions list. Thanks to the broth culture and being put on long-term antibiotics.

          I'm still battling, but winning, my fight with the resulting PN/PFD pain, but with the help of my power plate and monavie (I do NOT recommend that for ICer's, because it may damage the bladder lining) I'm getting better and better every day.

          If you want to hear more about my success story, feel free to PM me and we can chat via email/PM/phone, etc.

          I really hope that others find their cure, and hope that my story is taken seriously, because I've researched my butt off to find my cure, and it's been a long road of recovery, since it took about 10 months for my bladder lining to actually "heal"....but I'm here and loving life again.

          The broth culture and antibiotics saved my life, my marriage, my job, and my sanity.
          Holly
          1/19/2006 diagnosed with PBS/possible IC
          2/1/2006 Elmiron & Elavil 50mg
          3/2006 began PN symptoms
          7/18/2006 broth culture sent (found Strep D) stopped Elmiron & Elavil and began long-term amoxicillin - IC symptoms relieved at last!
          09/29/2006 PNMLT found pudendal nerve damage on rt side (nerve block to be done Oct 4)
          10/20/2006 - lyrica for PN pain (didn't last)
          11/20/2006 - cymbalta for PN (didn't last)
          12/2006 - stopped all meds and started Dr. Moldwin's therapy of valium and PT for PFD, which is still working for me
          UPDATE 7/1/2008 - weaning off the valium...taking 2mg nightly about 5 days a week, so doing great. No more pudendal nerve pain, although I'm careful about how I sit at work and try to exercise to stay relaxed to minimize PFD. A powerplate workout machine helps massage those inner PF muscles, and I take MSM and glucosamine (in MonaVie) religiously, which are both natural antiinflammatories. I feel GREAT!
          UPDATE 2/16/2010 - completely pain free!

          Looks like the "IC" pain caused my PFD, which pinched and damaged my pudendal nerve, which in turn sends out misguided signals to my PF muscles....battling this pain cycle, but at least I have been pain-free bladder-wise for 2 years now!

          JMHO - I don't believe that antibiotic therapy should be considered controversial....the theory that "IC" is a disease should be controversial. I believe that we all must find out what causes the damage to our bladder linings, stop that, and then let it heal. In only 9 short months, I added EVERYTHING back to my diet and have been "IC"-free for 2 years and counting.

          Comment


          • #6
            I'm really glad you are feeling better and I sincerely hope you continue to feel good. I know that after I was diagnosed, I went a full two years with no symptoms and I was so certain I was "cured" --- but my bladder knew I was not and the symptoms returned with a bang. At that time not much thought had been given to a diet connection so I wasn't following an IC diet at all (that was 1975).

            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
              Well, you probably didn't try the same "treatment" plan as I did....a lot has been researched and discovered since 1975, so I am fortunate to have been diagnosed during a time that the cures are being investigated and found.

              I really hope that people will not be discouraged from trying treatments that are medically known to cure people. My urologist is on the advisory board of two very prominent IC-focused non-profit organizations, so I really feel that her treatment should not be dismissed as a fluke.

              I thought I was dying two years ago, and wanted to most of the time, but now I'm free of this horrible condition, and hope that I can help others by telling my story. Other organizations listen to me, but I still have to post in the "alternative" section here, so please take me seriously....my team of doctors do, including my urologist, hematologist, neurologist and gynecologist.

              My story continues, and I hope to come back soon with my success story of PFD/PN pain. I'm not completely out of the woods, but gosh, those rays that shine through the leafy trees sure feel wonderful.
              Holly
              1/19/2006 diagnosed with PBS/possible IC
              2/1/2006 Elmiron & Elavil 50mg
              3/2006 began PN symptoms
              7/18/2006 broth culture sent (found Strep D) stopped Elmiron & Elavil and began long-term amoxicillin - IC symptoms relieved at last!
              09/29/2006 PNMLT found pudendal nerve damage on rt side (nerve block to be done Oct 4)
              10/20/2006 - lyrica for PN pain (didn't last)
              11/20/2006 - cymbalta for PN (didn't last)
              12/2006 - stopped all meds and started Dr. Moldwin's therapy of valium and PT for PFD, which is still working for me
              UPDATE 7/1/2008 - weaning off the valium...taking 2mg nightly about 5 days a week, so doing great. No more pudendal nerve pain, although I'm careful about how I sit at work and try to exercise to stay relaxed to minimize PFD. A powerplate workout machine helps massage those inner PF muscles, and I take MSM and glucosamine (in MonaVie) religiously, which are both natural antiinflammatories. I feel GREAT!
              UPDATE 2/16/2010 - completely pain free!

              Looks like the "IC" pain caused my PFD, which pinched and damaged my pudendal nerve, which in turn sends out misguided signals to my PF muscles....battling this pain cycle, but at least I have been pain-free bladder-wise for 2 years now!

              JMHO - I don't believe that antibiotic therapy should be considered controversial....the theory that "IC" is a disease should be controversial. I believe that we all must find out what causes the damage to our bladder linings, stop that, and then let it heal. In only 9 short months, I added EVERYTHING back to my diet and have been "IC"-free for 2 years and counting.

              Comment


              • #8
                Please don't mistake what I said as me not having medical care since 1975. I have an excellent medical care team who are up to date on treatment options for IC --- it's why I'm able to live a normal life in spite of having an IC diagnosis.

                As I said, I sincerely hope your symptoms are gone forever.

                Warm hugs,
                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


                • #9
                  Holly, who is your urologist and where are you from? How did you go about getting the broth culture?

                  Jen

                  Comment


                  • #10
                    Please post your dr's names and where they are -
                    I would all like to work with a team of dr's that could make me symptom free. Thanks so much.

                    Comment


                    • #11
                      Hollipop,

                      I'm glad to hear that you're better! That is great news.

                      Erica

                      Comment


                      • #12
                        Hollipop Im so happy for you that your better. I hope I will be the next to get better too! I hope we all get better fast.

                        Comment


                        • #13
                          Originally posted by jen74 View Post
                          Holly, who is your urologist and where are you from? How did you go about getting the broth culture?

                          Jen
                          Broth culture was sent to United Medical Lab. Her Urologist, doesn't do long distance consultation. Very understanding doctor though, how many doctors do you get these days, who take broth culture seriously?

                          I tried to get treated by her doctor, but she wouldn't do long distance. Ruth's care is good enough for me. I forgot where Holli lives, sorry Holli lol

                          Vampireness
                          Last edited by Vampireness; 10-06-2007, 07:45 PM.

                          Comment


                          • #14
                            Hey Holli,

                            I remember your struggle through this and I'm so glad you got through it, can't believe it's been a year actually. I don't remember you having Group D Strep, I remember some other bacteria but I have it now. How long were you put on antis for Group D Strep.

                            The powerplate as you told me, seems like a really good idea, you do your research well!! I'm glad your PFD is under control.

                            Mpizzie619 - For someone to feel better from antibiotics therapy, there should be no further infections, like in my case, there seems to be multiple infections, so my nurse is asking me to keep my nutrition level up, so I don't get reinfected and able to fight off the current and future bacteria, so the bladder can heal.

                            You could get a broth culture done, because that's what Holli did, then her long term antibiotic treatment started.

                            Vampireness

                            Comment


                            • #15
                              Hollipop, I'm glad for your successful treatment. I wish that every dr. in this country would culture for all organisms that can cause a UTI. Medicine changes all the time. As a librarian, any medical information over 5 yrs. old had to be weeded from our collection. Broth is a culture medium--it's used in hospital labs all over this country. My IC symtoms started in 1989--I was treated with antibiotics, dilations, silver nitrate, and a partial hysterectomy! I wasn't correctly diagnosed until 1994. I know how frustrating this is. Elmiron was a miracle for my bladder! I think everyone knows that my antibiotic therapy hasn't been successful--it's created a lot of additional problems because it colonized. I'm still fighting for enterococcus, staph and all the other organisms that cause complicated UTIs to be cultured for when symptoms occur and your regular culture is negative. Chronic bacterial prostatis is treated for 3-6 months and there's documented research to show that enterococcal infections deserve the same protocol. It's frustrating to have both conditions--we don't know what causes IC, but urologists know what bacteria cause complicated UTIs and they still refuse to order a culture that will find those bacteria. I know I'm way-off the original question, but this whole issue of "cultures" frustrates me--they're available in our hospitals and nothing is mysterious about broth. The urine from my kidney was cultured in broth at Gulf Coast Hospital in Panama City, FL while my urologist attempted to find the "host" organ for my infection. Hollipop--once again, very happy you're getting your life back.

                              Debbie

                              Comment

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