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 Public & institutional Awareness - create a storm

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dantheman



Posts : 130
Join date : 2016-04-04
Location : Adelaide

PostSubject: Public & institutional Awareness - create a storm   Mon Apr 11, 2016 3:32 pm

One of the things i have tried to do and have done is email any one who will or won't listen. There is a great prof in Adelaide whose specialty is chronic pain called lorimer Moseley. He had very little knowledge of pain full bladder but after a few emails he had said he will start to educate him self on IC. With this disease and many like it you just never know where the answer may lie or who might discover it. The more people we email and tell our story to the more chance there is of one day finding Better treatments.
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IC Queen



Posts : 42
Join date : 2016-04-13

PostSubject: Re: Public & institutional Awareness - create a storm   Sun Apr 17, 2016 2:04 pm

I can't agree more with this. Basically I would prefer to be a private person, but I have been on TV and radio with urologists and too many news articles and write ups to remember. I was shut down for a bit, but these new researchers have given me renewed hope. My grandmother's maiden name was Moseley, sp? otherwise never heard the name. Let us know his thoughts on the disease?
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dantheman



Posts : 130
Join date : 2016-04-04
Location : Adelaide

PostSubject: Re: Public & institutional Awareness - create a storm   Wed Apr 20, 2016 1:12 pm

Isn't it amazing what a little hope can do.
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IC Queen



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PostSubject: Re: Public & institutional Awareness - create a storm   Wed Apr 20, 2016 2:08 pm

Absolutely. We have it now more than ever....but still, how long do you think it will be?
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dantheman



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Join date : 2016-04-04
Location : Adelaide

PostSubject: Re: Public & institutional Awareness - create a storm   Wed Apr 20, 2016 4:10 pm

10 years or more or less if the answer is staring researchers in the face. I think that the hardest part is trying to permanently recoat the bladder or finding the specific nerves which have become hyper sensitized. I've been reading up on dmso and its use on IC once again a miracle for some and a non starter for others. Alot of people are scared of it but its actually a natural substance and some people even drink it. The doctor who first used it on IC drank it for years. It is used intravenously as an anti inflammatory. It's linked to MSM but i have not heard of them using msm as an instillation.
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IC Queen



Posts : 42
Join date : 2016-04-13

PostSubject: Re: Public & institutional Awareness - create a storm   Wed Apr 20, 2016 8:25 pm

You know about anti proliferative factor (APF) found only in IC pts.? I was at a national research mtg in the US in the early 2000's and was standing next to a guy at the door when the researcher who found this came out of her presentation. He asked her how long until a cure would be found. I remember her answer then. Ten years. Oh well. I also remembered a few years earlier when volunteers introduced speakers and I had introduced her before she became big time with her discovery. Know if anything has become of APF? DMSO never helped me and I sure had my share when it was about the only thing around. It was not as bad as Cloropactin sp? though. In the book I read about JFK's many illnesses, I read that he used DMSO, not sure for what or how, but Bobby, his brother, tried to get him to stop using it and the book says JFK's response was, "I don't care if it's horse piss, if it helps, I'll use it." I remember reading he was diagnosed at one point with urethral syndrome, but that his urologist's records were destroyed. Which reminds me, let's all be on the lookout for a famous person who is willing to "come out" for the cause. Think it would speed things up significantly. I think the reason they don't want to come out in some cases in because the literature often says many people are unable to have sex. Think famous people (especially actors) don want to be thought of this way. Note: if I get details of anything a bit wrong, it is due to less than great memory.
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IC Queen



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PostSubject: Re: Public & institutional Awareness - create a storm   Wed Apr 20, 2016 8:29 pm

Sorry another typo, instead of don want, it was meant to be don't want.
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dantheman



Posts : 130
Join date : 2016-04-04
Location : Adelaide

PostSubject: Re: Public & institutional Awareness - create a storm   Thu Apr 21, 2016 7:30 am

What did happen with the APF research,? I wonder if Antonina and Barry will start from scratch or will they be building on previous knowledge or research? The answers are already out there. I looked up the IC in cats research and it seems in many cases a simple change of diet and a few supplements reverses the disease in cats.
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