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Anyone With Success?

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  • #46
    I just wanted to respond to the posts about group B strep (not about enterococcus or any other bacteria.) Group B strep is a bacteria that is a normal part of many people's gut flora. About 1 in 3 to 1 in 4 people have this bacteria living in their body. It becomes a concern in pregnancy, which as a student midwife about to graduate from school, is where I have had much experience with this bacteria. Is is routinely tested for in pregnancy with a vaginal culture, because if a woman has group B strep at the time of childbirth and the baby gets exposed to it, it can infect the baby (since babies are born with a low-functioning immune system.) So all women have a vaginal culture for this bacteria, and if positive, we treat them with IV antibiotics (usually penicillin G) during their labor. Is is VERY common for women to have this bacteria in their vagina, but sometimes they are so heavily colonized that it can show up in their urine. In that case, it is possible to have a UTI with group B strep, and women are also treated with antibiotics during their pregnancy, because it is considered a pathogen that causes UTI. I have seen it show up on more than a few urine cultures.

    And, as a matter of fact, about 70-75% of all urine cultures we take from our pregnant clients have a result of anywhere from 3,000-100,000 mixed gram positive bacteria. (a UA is routine at the first prenatal visit to check for asymptomatic UTI--which can quickly lead to pyelonephritis in pregnant women). In these women it is all considered "normal vaginal flora" or "contamination from external genitalia". And not treated. Only when there is a specific bacteria isolated (e. coli, GBS, klebsiella, etc.) does the client get treated. So my point is that there are huge amounts of women running around just fine with no IC that have mixed gram positive bacteria show up in repeated UAs. Is it contamination? Enterococcus? We may never know. But my point is that it is REALLY common to see any number of mixed gram positives show up on a UA in obstetrics. No-one blinks an eye about it!
    30 year old Mother, Midwife, Birth Doula, Herbalist, and Massage Therapist with sudden onset of IC approx. 2/16/05 (after a PAP smear and routine gynecological exam). I tried a HUGE list of natural and alternative treatments (including Cystoprotek, Desert Harvest Aloe, Aloe gel, Glucosamine/Chondroitin, L-Argenine, Quercitin/Bromelain, Marshmallow Root...etc) for the first 9 months of having IC, without much relief, until I finally researched and started Elmiron.

    My experience:
    ~Previously took Elmiron 100mg three times a day
    ~Experimented with dosage (1-2 Elmiron a day recapped into a plain gelcap) and did well with occasional mild flares. (7/06-9/09)
    ~Stopped all together at the 1 year mark (9/29/06) for 10 days. Still felt good, with low-level symptoms.
    ~Decided to go back on it (10/16/06) to see if another year on it will bring me into full (zero symptoms) remission. Currently taking 1-2 pills a day, recapped into a plain gelcap.
    ~ 6/08...Tried to go off Elmiron again, had huge flare at the 3 week mark, went back on 100mg once a day for maintenance.
    -I went off Elmiron for 2 months due to pregnancy and had a complete relapse of IC symptoms to pre-diagnosis levels of pain/frequency. I then went back on Elmiron at 10-12 weeks, but was unable to take it further due to severe morning sickness. The 2nd/3rd trimesters were MUCH better IC-wise, and postpartum is the best I have felt in years. I am no longer on Elmiron for now.
    -20 month postpartum remission from 4/17/09 to 12/10/10.
    -Out of remission after a pap smear on 12/10/10. Pap smears are obviously the main IC trigger for me. Currently trying to cope with loss of the remission.

    Also doing:
    ~Sugar-free/gluten free and strict IC diet (With an emphasis on organic, alkaline and whole foods)
    ~Prenatal DHA/Fish oil supplement
    ~Vitamin D supplement
    ~Culturelle probiotic


    • #47
      Mixed Gram postitive culture

      I agree that mixed flora on a urine culture is contamination. These
      women also aren't symptomatic, don't have damaged bladder walls, and
      their immune systems are working well and can handle a certain level of
      bacteria without problems.

      IC patients have damaged bladder walls, have impaired immune function,
      and are symptomatic.

      I don't know of a study of extensive culturing of healthy women. Maybe urine is not sterile after all. But it usually takes a very extensive culture to find certain bacteria that are not easy to grow. Or maybe labs dismiss some low growth since they consider it "contamination" when in fact it should be reported if there are symptoms. I was always told I did not have any bacteria until a broth culture found Enterococcus that my uro treated.



      • #48
        Re: I'm cured....

        How do you pm someone?


        • #49
          Re: I'm cured....

          click on their name, gives you the option to message


          • #50
            Re: Anyone With Success?

            Hi I'd love to PM. I'm just starting long term antibiotics! My email is [email protected] xxxx