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dantheman



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Location : Adelaide

PostSubject: Related diseases    Thu Apr 07, 2016 9:50 am

My question to the researchers is. Will research look into why so many people with IC end up with things like fibro, endo, chronic fatigue, even sjogrens and lupus. If so will they test other organs other than the bladder for signs of inflammation. IC isn't just a bladder disease. In so many cases it progresses and becomes more complicated. The fact that outsole as young as 12 get diagnosed and live with it for many years before it changes into multiple conditions is an area of research worthy of consideration
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Tina2



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Join date : 2016-02-15
Location : Queensland Australia

PostSubject: Re: Related diseases    Sun Apr 10, 2016 7:05 am

As I have already said dantheman, to me it seems like we all have "basic" symptoms, but then we break down into 3 or 4 groups with each group having its own set of additional symptoms.

One thing that jumps out is how sensative many of us are to medication, we react to things people who do not have IC-BPS dont react to. I have cut the Oxybutynin down to 1/4 a day in desperation to slow the frequency and pressure pain but after just 3 days I am yet again starting to get that fuzzy head, which I know will trigger another migraine if I keep taking them.

So incredibly frustrating to find something that helps but then find your body is fighting back and refusing to accept the treatment.
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dantheman



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PostSubject: Re: Related diseases    Tue Jun 28, 2016 7:08 am

dantheman wrote:
My question to the researchers is.  Will research look into why so many people with IC end up with things like fibro, endo, chronic fatigue, even sjogrens and lupus. If so will they test other organs other than the bladder for signs of inflammation. IC isn't just a bladder disease.  In so many cases it progresses and becomes more complicated. The fact that outsole as young as 12 get diagnosed and live with it for many years before it changes into multiple conditions is an area of research worthy of consideration

I was wondering if the researchers could answer this question. I think it's important.
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Tina2



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PostSubject: Re: Related diseases    Tue Jun 28, 2016 10:02 am

Morning Dan, gee how good would that be. I have always struggled with medication even simple things like antibiotics, my system just wont accept them.
I am now back on Vesicare just 5g a day, I totally hate the stuff, I cant remember a thing, and the constipation is back and worse of all it is not a patch on controlling the frequency and even the odd leak is starting again. SO, now I have added the 1/4 Oxy back into the mix, but again I am off my food, and my heart is starting to pound. You would think "someone" could come up with something that works and does not make us so sick how hard can it be.
I talk to people on other IC forums and they all have the same issue, over sensative to medication. I cant even take 1 panadol or the bladder gets VERY angry .

Dan have you ever though of or tried Ozone therapy ? I saw on the inspire web site where one lady bought her own ozone machine for $2000, after going for treatment and it being such a success. Sshe is now just about symptom free.
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dantheman



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PostSubject: Re: Related diseases    Tue Jun 28, 2016 1:16 pm

I haven't tried ozone. I have spent thousands of my own own money not to mention tens of thousands of tax payer dollars with specialists etc and next month I'm trialling interstim. If my condition was mild I would have it under control but it's severe and I have a number of cross over issues which are really all nervous system related. IC doesn't just exist in the bladder. I have found Low Dose Naltrexone somewhat useful and it has had the least side effects to benefit ratio. It has helped with sleep, brain fog, some pain too. It would have been fantastic if I'd used it before this became chronic. Do some reading online about LDN at the LDN network trust as there are people with IC in the early stages who have had good results.
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Tina2



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PostSubject: Re: Related diseases    Tue Jun 28, 2016 1:32 pm

Thanks Dan, appreciate all the info you put up on this site. I really hope you get some relief from your pain. Hopfully Prof and his team will have some good news for us all.
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Andi2016

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PostSubject: Re: Related diseases    Tue Jul 05, 2016 10:36 am

Dantheman, Summerly posted a link to a recent study that forms part of the Human Microbiome Research Project ('Stool-based biomarkers of interstitial cystitis/bladder pain syndrome') http://www.nature.com/articles/srep26083 . In this paper they've identified HPA dysfunction, depression and voiding dysfunction to be associated with IC/PBS, but they comment they can't find the mechanism that ties them all together. The paper also notes a higher incidence of conditions associated with IC/PBS being allergies/respiratory tract disorders and gastrointestinal diseases.

Prof Marshall has listed the following as disorders associated to IC/PBS: chronic prostatitis (CP), fibromyalgia, vulvodynia, endometriosis, irritable bowel syndromes (IBS), inflammatory bowel disease (IBD), pelvic floor dysfunction (PFD), chronic pelvic pain syndrome(CPPS), chronic low back pain, pudendal neuralgia, allergy/hypersensitivity, sjogren’s syndrome, lupus erythematosus, rheumatoid arthritis, coeliac disease, multiple chemical intolerance, chronic fatigue syndrome (CFS), chronic tension-type headaches, tempero-mandibular disorder

In my opinion, some of these are simply symptoms associated with the original condition, some are the result of enduring IC/PBS over a long period and some are the result of disease progression.
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dantheman



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PostSubject: Re: Related diseases    Tue Jul 05, 2016 11:56 am

Hi Andi, you seem to be very up to date on this condition and research. Are you a sufferer or a researcher? Also,  there doesn't seem to be a lack of research going on but every bit of research leads to more questions and no real hard answers. The research is then conducted and what seems to happen is a complete lack of follow up. For instance,  biomarkers and stool samples, if i was a researcher i wouldn't be able to stop the research knowing that there are biomakers, I'd want to know more.
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Andi2016

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PostSubject: Re: Related diseases    Tue Jul 05, 2016 12:37 pm

Dantheman, I am a sufferer. Dr Volikova has my story, which began at the end of 2013, but probably dates back much further if we include a history of recurrent UTIs. I've become a desktop researcher out of necessity and an obsession (?) to get better. I've never accepted what doctors have told me because it wasn't logical. Instead of becoming helpless and a victim to crap information, I decided to learn as much as I could by myself. In the process, I came across a lot of like-minded people who are very smart, equally driven not to accept the nonsense they are being fed, and adamant to become educated and better informed.

I really do think research in this area is going to fly. Alan Wolfe's discovery of the Female Urinary Microbiome (FUM) has raised even more questions and forced others to reconsider everything they previously thought to be true. We couldn't be luckier to have Prof Marshall take this on right here, right now. I just wish it could happen faster.
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dantheman



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PostSubject: Re: Related diseases    Tue Jul 05, 2016 5:29 pm

I am so disappointed with my disease. I have never had a uti, my bladder is just pain full and doesn't work. I have done so much to try and get function back but it seems like once you have lost it is gone. Can't believe i can't heal my self. If i didn't have dysfunction i would be more hopeful. I used to have IBS but i healed that pretty much 95.00percent of the time by dietary changes whilst trying to fix my bladder. I hope they work out what's going on.
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Andi2016

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PostSubject: Re: Related diseases    Wed Jul 06, 2016 9:25 am

I'm not sure that's relevant, Dantheman. My father had chronic prostatitis without ever having a UTI in his life. His GP wasn't able to treat him properly with antibiotics because he would have considered it an acute infection, so he ended up having his prostate removed. Bill Costerton says chronic prostatitis is a biofilm infection which requires specialised, high dose antibiotic treatment. If you've watched this interview before, please watch it again for inspiration (the prostatitis part is mentioned at 5:28).
https://www.youtube.com/watch?v=M_DWNFFgHbE
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