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  • #16
    Thanks, Debbie. It's been a life saver, that's for sure. And now I don't feel like a hypochondriac anymore.

    Jen - already PMed and reponded on another thread to you, sweetie!
    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.

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    • #17
      Re: Check this out!!!!!!!!

      As for biofilms, I should point out that I have studied biofilms in the past and that my closest science colleagues are major players in the biofilm field. In that context, I would be careful about concluding that biofilms are involved in chronic bladder disorders. They may be involved and then again they might not. There is nothing definitive yet. We will see as our research progresses. The same goes for evidence that certain bacteria can be identified in the urine of IC patients. Maybe and maybe not. But, now that we know that there are bacteria in the bladders of most (if not all) individuals, we can base our future studies on a much stronger foundation – one that includes bacteria and other microbes as possible causes or at least contributors. That is a huge advance.

      I wish I could tell you that we’ve found the answer, but I cannot. What I can say is that we’re are actively searching for that answer. I can also say that my clinician collaborators (such as Dr. Brubaker) and her colleagues care deeply for their patients and are doing everything they can do to help them. We are in this hunt to improve lives.

      I hope this helps.

      alan

      Alan J. Wolfe, PhD
      Co-director, Loyola Urinary Education and Research Collaborative

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      • #18
        Re: Check this out!!!!!!!!

        I tried yesterday to mail in my urine sample to the Virginia lab and ended up unable to mail it because of the dry ice issue. UPS and Fed Ex won't take a mailer with it in it because it is considered to be a dangerous substance. So I now have to go to a special Fed Ex place to send the sample. But I think my infection is bacterial all the way. Once we found bacteria from a regular culture--treated with antibiotics but it did not completely clear. So wish me luck. What will you do now that you found the bacteria?
        I treat myself with Desert Harvest Aloe Vera capsules, Bio Film Defense, De Mannose 500 mg 3 x daily, Probiotics, and calciam Citrate Time Release. I do Yoga and this helps me more than anything else. I have also done PFD re-training. I have flares every 3 months.

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        • #19
          Re: Check this out!!!!!!!!

          This is a fairly old post and we haven't heard from chelseau recently.

          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

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