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  • There's a fungus amoung us!

    If you look on the main ICN page somewhere you'll find Jill's reference to a study that shows that IC may be more connected to fungal infection rather than bacterial infection. Indeed, researchers are proving that actually having less diversity of bugs in our bladders is worse. I had a huge flare and I went to a clinic and had a vaginal swab which showed DNA of gardnerella vaginitis (BV) but no candidia. I will get treatment for this. Well, this is also what showed up on my Microgendx urine report but no doctor paid any attention to it. What also showed up is 100% of one weird fungus Naganishia Friedmannii. I'm thinking the title of this sub forum should be Managing Fungal Infections. It's not just candida or gardnerella which I'm not sure is a bacteria or fungus. No one knows the significance of the fungus I supposedly have. I have an ND who insists I have fungus in my body, but he didn't do any actual medical testing to come up with that diagnosis. He wants me on a strong anti-fungal, but I'm not so sure I want to take it. My MD's pretty much disagree but then there's that fungus in the report. At a cross roads here, but for sure going to treat the gardnerella first.
    I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.

  • #2
    that is interesting. I'm having a super good day. It is weird, sometimes I believe IC is a hidden infection, other times I believe it is some weird type of pain syndrome. related to a messed up bladder wall. When I would get heparin lidocaine instilations they would help, but be temporary, ,and in no time things would deteriorate again. Since I've been doing dmso, things start off relatively bad after they feel good while the medicine is in, then after a few weeks things feel better. I almost think it is because the bladder gets damaged, then things heal and things feel better. So sometimes I believe maybe it is a bladder wall problem. If IC is an infection I think that dmso is the way to fix it because it is the only thing out there that gets put directly into the bladder that is caustic and can penetrate and maybe can kill the infection. Have you tried dmso yet? I"m no saying it is a magic bullett, but I"m making progress. Getting better from this terrible condition takes a long time. It took a long time I believe to damage myself like this so it is only fair to get better slowly.

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    • #3
      neohoic - I had dmso in 1986 before a urologist even uttered the words interstitial cystitis to me.It just burned a bit but didn't help me at all. I think dmso is an anti-inflammatory not necessarily an antiseptic but I'm not completely positive about that. They used to use chlorpactin which was like bleach and I don't think they use that anymore. Oddly enough I met a nurse one time who said her IC was cured by it.I have the same situation where some days are much better than others. Sometimes it feels like irritated nerves and the pain moves around from urethra to what feels like the top of the bladder and then from left side to sometimes right side. I'm fairly certain I was damaged by utis in my late teens and then getting urethral dilations on top of that started the IC. I'm not sure fungi are the cause of IC, but if the bladder wall is messed up then maybe it is easier for bacteria or fungi to set up shop. But then this does not quite fit the profile of healthy bladders having a larger diversity of bugs which supposedly they do. Maybe our microbiome allows stronger bugs to take hold and push out the weaker. All those lidocaine heparin instillations were not a fix for me. I used to do them at home. I think the cure, if there is one, is going to be something to do with the microbiome. It not just a bladder disease though. Our brains have been sensitized to allowing pain signals to become exaggerated. That's what the MAPP study is about in addition to studying the microbiome. They better hurry up. They're taking too much time.
      I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.

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      • #4
        I'll just be happy when researchers come up with a "cause" --- (I suspect there may be many causes!) and a cure will follow.

        Donna
        Stay safe


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        • #5
          I didn't get much help after the 1st dmso treatment, but 2 weeks after the 2nd one I felt better than I had for 1.5 years. I had the 3rd dmso treatment, and the first 3 weeks were bad after it, but the last week has been great. I"m getting another dmso in a few days. I know it is going to mess me up, but I"m looking forward to feeling even better after a few weeks or so. AFter this next dmso treatment I"m going to start getting them once every 6 weeks. I think the key is to give your bladder time to heal before getting the next dmso treatment. I don't know how dmso works, but it is doing something. Getting better from this terrible condition takes time, but maybe I can get better. If I can't, the bladder removal is the way to go. Living with this terrible bladder pain condition is just not possible. This is a terrible condition.

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          • #6
            Ok.. that fungal infection is very very weird! Wow! Was just doing some reading on it and it's common in volcanic settings. Have you taken a trip recently to Hawaii or someplace with a volcano or walked on a black volcanic beach? I agree.... the category name should and will be changed!

            Jill
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            • #7
              Jill - I was in Iceland last year but just briefly and really only one day on a tour to the parks. It really is a weird fungus isn't it? I asked Microgen. I thought the rep said they've seen it before. I've had IC for 48 years! I don't think that fungus caused it. I think I just had too many infections in my late teens and dilations that damaged the bladder lining and have some sort of genetic disposition which prevents healing.
              I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.

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