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False claims of an IC cure

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  • False claims of an IC cure

    Folks, for the past several months, we've received phone calls from women who were excited to share the news that a cure for IC had been found. They were cancelling their prescriptions, stopping procedures, etc. etc. because they had read an article in a women's health newsletter that announced the cure.

    The editor/writer/whoever suggested that Cystoprotek, a popular supplement, was THE CURE. Of course, this was done without the knowledge of the company, Algonot, or the researcher who developed it, Dr. Theoharides. They have never suggested that it could cure IC... and a simple review of the research presented just a few months ago shows that Cystoprotek had a 51% response rate. That's a good response, but it isn't the 100% needed for a cure. I just can't believe that anyone would make such an absurd claim. Surely, they would have atleast talked with the company to credibility check their claim first, right?? Right!

    I'm concerned because I can see patients who may feel duped and end up bitterly disappointed. They thought that they might be "cured" when they weren't. I can see the product being labelled in a manner that it does not deserve. Again, the company and inventor have never suggested that this would cure IC. But, they do believe that it can help control bladder symptoms.

    So, if you do hear about this "cure" for IC... and if you read any website that suggests that they have a cure for IC, I urge you to be VERY VERY cautious. Be particularly careful of websites who that say "We've discovered the breakthrough cure for IC... and you can read more about it for just $29. If it sounds too good to be true, it probably is.

    Unfortunately, we do not have a "cure" for IC because research has not revealed why the bladder is producing the antiproliferative factor (and other things) which interferes with bladder healing. But, we certainly have many patients who improve using diet modification and simple therapies.

    There is HOPE! The research is popping and revealing more vital information with each study. I firmly believe that a cure for IC will be found... and you can expect that it will be announced during a large press conference by a formal IC research center, or the NIDDK or an IC patient organization. We're certainly not going to charge you $29 for it.

    Jill O.
    Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality.

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  • #2
    Dear Jill,

    Thanks for the clarification and for all the good work that you do. You are much appreciated! I don't know what I'd do without this site to refer to.



    • #3
      This is so true. I've seen an IC "cure", a fibro "cure", an IBS "cure"...etc etc. Unfortunately we get so desperate we are willing to try anything. It's hard to resist the "testimonials" posted.

      Thanks Jill.
      (Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).

      Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).

      I'd like to be on House, MD as a medical mystery.

      Married to Craig, a saint amongst men...who puts up with me and my eccentricities...

      Connor & Mommy by the tree:

      Connor with happy!

      I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!

      Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...

      I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!


      • #4
        When I see the words "cure" and "interstitial cystitis" in the same sentence, it runs up the red flags for me. I met a lady several years ago on the internet who had been symptom free for two years --- therefore she pronounced herself CURED! As you can read on these boards, there are many ICers who have had remissions for several years and are back because their symptoms have returned.

        When a real cure is found --- and I have every confidence it will happen --- it will be announced on these boards, as well as on the ICA site. I just hope it will be this year.

        Stay safe

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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.

        Anyone who says something is foolproof hasn't met a determined fool