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I believe IC with normal looking bladder is most likely a hidden bio-film infection

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  • I believe IC with normal looking bladder is most likely a hidden bio-film infection

    Hi everybody, if you don't have hunners ulcers, and don't have small bladder, and you have gone thru pelvic floor therapy like me and you still have pain that is completely relieved when you get an instillation I believe you have a bio-film bladder wall infection. If you get relief from anti-biotics it is confirmed in my opinion. I hear some people say that anti-biotics have anti-inflammatory properties, but I bet they don't fix bad headaches from alcohol hangovers when anti-inflammatories do. So that would tell me if anti-biotics fix your bladder pain temporarily then you have some type of hidden infection. Check out the microgen dx website their is an awesome video from Dr. Bill Costerton that takes about 12 minutes to watch and speaks about bio-film infections. He explains that mountain stream water has water that is so pure that it is 99.9999% clear of bacteria when a culture is done. But yet the rocks are so slippery with algae you could slip and fall very easy. He explains bio-film don't leave bacteria in the water. He explains that cultures used today are 100+ year old technology that acurately find acute infections good, but don't find hidden chronic biofilm infections. Some of these new dna sequencing tests may be able to. He explains that sometimes having a hidden infection can cause problems in the body if it spreads. I'm not sure that would happen in the case of the bladder but he makes a good argument in some cases. He gave some examples like the prostate saying if you can't kill the infection you can solve the issue by removing the organ. I really think by understanding what infection you have, and then properly treating it gives you have at least a better shot of killing the infection. You still might not be able to ultimately get rid of it though (remove the bladder). According to his video bio-film infections are difficult to kill. I think I"m on the right path with 50% dmso. That stuff might very well penetrate the bladder and possibly kill off some of the bio-film infection. Ultimately I'm probably going to have my bladder removed eventually, but I"m going to keep trying for a while longer. If 50% dmso damages the bladder, you might not have anything to lose in the process. I kind of like the idea of a urinary diversion sometime, because I believe if there were no urine in the bladder, on the infection, the infection might die or become dormant and stop giving pain. I can imagine streams that I saw when I used to spend time in woods that were all dried up, and the moss (aka algae) was still there but all dried up and not really alive. I believe diet can play a huge part. If you can follow the diet closely enough, it is possible you could slowly starve the infection to the point where at least it is not very active and it won't give as much symptoms. I"m going to try taking prelief with all my meals to see if that can help more.

  • #2
    Did you do the microgen dx urine test? If so, what did it show? I am thinking about doing this myself. I think IC is caused by other underlying issues going on in the body. I honestly believe everyone has bacteria that is in their bladder, just that their immune system keep it in check. When people come down with IC, it is because there is wide spread inflammation in the body and the immune system is being hampered some how. I know for me, Antibiotics is the ONLY thing that helped my IC. However, taking antibiotics long term is Not a good solution and can really cause further issues by depleting the microbiome of the gut even more so.Most people who have IC also have other health issues going on( I have CIRS, fibro, MCAS, CFS, etc..). I think it all started from gut dysfunction( dysbiosis). The majority of the immune system resides in the gut...

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    • #3
      Hi Jen74, I actually haven't done the microgen dx test. The urology group that offered it said they could do it, but have a similar test with another company that they use more frequently and have an established relationship with. So hopefully it will be covered by my insurance. Have you tried dmso yet? I"m waiting to get the results back from that test. HOpefully I will when the holidays are all over. I"m having one of these days that when the pain is on, it is really bad. But when the pain is off I"m doing really good. I hate bladder pain.

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      • #4
        It seems like this website has changed it's format like alot less people are posting on it. I wonder why that is?

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        • #5
          I had dmso a long time ago in the mid-80s and it did not help me one bit. I've done microgen testing (1st stage is PCR testing and 2nd stage looks for DNA) and sure there is some second stage testing DNA stuff in there as well as a strange fungi and gardnerella a vaginal microbe that actually started to bother me and I had to treat. I didn't test out for any of the other obvious PCR stuff and I believe that taking the herbs I do has kept that at bay, but you know I stopped the herbs and pronto I got a real positive e-coli UTI, which by the way a study has shown gardnerella eats away at the bladder lining and lets e-coli make a biofilm. So this all sounds like infections cause IC, but here's the rub. Number one is the doctors all know that urine testing by peeing in cup vs. catheter vs. some invasive way they can get urine out of a bladder (not sure what the procedure is) produces different results because there is most likely contamination from the skin near the urethra when you take a sample. Number two is that the newer studies are showing that there is plenty of bacteria in healthy bladders. That's why my doctors don't know what to do with the results. Now, I'm just thinking that our bladders have been insulted in some way whether by infection or trauma and therefore we are just more susceptible to being bothered by whatever is in there. So let's say you clear all the infective agents, and some people have and get better (and sadly some don't). Then what, you better not get any more infections else it will start up again. I think what happened to me is I had a lot of infections in my late teens and then was dilated by a urologist which caused I think micro tears in my urethra and than bam IC started because I am a sitting duck for low level activity, but you know I don't know for sure. Maybe that just started up some autoimmune thing. For sure, if your IC is a bladder wall thing, then, yea MAYBE there is just multiple infections in biofilm but that is not agreement yet by docs. They're are looking at the whole microbiome however, but as usual it'll will take them forever.
          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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          • #6
            All I know is when I'm on anti-biotics (bactrim) I feel real good. So it must be some type of low-grade bio-film infection of some type. I mean if it was irritation, it would get better. I've never had an injury that doesn't get better. There must be some type of infection. And doctors don't understand how bio-films work, or how to kill them or other reasons why pain increases after anti-biotics are over.I"m looking forward to getting my results from the genetic urine test I took. Maybe they can try anti-biotics again. I don't want wreck my gut, so I don't think I will take them for much longer than a month. I"m meeting with a doctor this Friday and I want to talk about bladder removal. I really don't believe it makes sense to live like this for year after year. This is a terrible condition and nobody likes the idea of having a bag attached to them for the rest of their life but this is a terrible condition and I think it would be worth it to solve this.

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            • #7
              Originally posted by neohioic View Post
              It seems like this website has changed it's format like alot less people are posting on it. I wonder why that is?
              It can take a while for folks to get used to a new format --- I visit every day and it's still taking a while to figure out how to do some things. We'll get there.

              Happy New Year !!!!

              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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              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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              • #8
                I'm like Donna. But I'm working on learning it.
                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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