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False claims of an IC cure

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  • ICNDonna
    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.


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  • verdicries
    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.

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  • dminton
    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.


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  • icnmgrjill
    started a topic False claims of an IC cure

    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.