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 Reading and Resource Articles from other Expert Sites

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barjammar

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PostSubject: Reading and Resource Articles from other Expert Sites   Thu Feb 25, 2016 8:40 am

Today I was writing to Quentin Clemens in the USA and read an excellent summary document that they have on the NIH web site here: Review and Summary of the ic-bps syndrome 2016.  Of interest to me was the mention of "overlap" with untreatable syndromes in gastroenterology (irritable bowel) and rheumatology (fibromyalgia).
Our site has similar information but maybe we are more free to speculate since we don't have as much reputation to preserve as the NIH.  We will add to this post as time allows.  It might end up a bit like a journal club.  I also posted a copy (pdf) of the article in the dropbox we use here: Link to our pdf copy of NIH IC-BPS review and summary article. Cool


Last edited by barjammar on Mon Apr 04, 2016 1:54 pm; edited 1 time in total
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Andi2016

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PostSubject: Re: Reading and Resource Articles from other Expert Sites   Sat Feb 27, 2016 5:46 pm

I don't have IBS or fibromyalgia, but lots of women I'm in contact with do have an overlap with other conditions such as IBS, fibromyalgia, CFS and Lyme disease. Thyroid and adrenal dysfunction also seem to be common among us. After dealing with this condition for nearly two and a half years, I now have low cortisol and low thyroid (which at least I can work on). I'm sure it's the result of dealing with this awful on-going condition, which I believe is infection.
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Tina2



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PostSubject: Re: Reading and Resource Articles from other Expert Sites   Sun Feb 28, 2016 6:31 am

I have fibromyalgia as did my late brother. I am trying to work out the link between bacteria in the bladder and fungle issues. I have been on 50g of Fluconazol for close to 18 months and it was a huge help but now I seem to have become resistant to it and it is no longer working and I am back to square 1. Tried Nylstat but it did nothing and tried increasing the fluconazol to 100g a day but did nothing. I find I am exhausted at trying to cope on a daily basis with my IC. I believe many have IBS as well as migraines.
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IC can be cured



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PostSubject: Re: Reading and Resource Articles from other Expert Sites   Mon Feb 29, 2016 8:51 pm

Interesting reading and quite a comprehensive summary of all aspects known thus far about IC/BPS. I have given much thought to this condition as a autoimmune disease? As rheumatology often incorporates this am not surprised to see that. I like that we can speculate and ask new questions and we are not limited by reputation.
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Tina2



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PostSubject: Re: Reading and Resource Articles from other Expert Sites   Thu Mar 31, 2016 1:56 pm

Thought I would give an update. I had my urine tested in the USA using next generation testing. The results were interesting that it showed no fungal issues but it did show high levels of ecoli and a couple of other bugs that didnt show up on AUstralian testing.
I have read that research in the USA is finding that the bladder is so complex that if you kill off one thing it then leaves room for something else to spread and take up the space left by the dead bug. This would explain why I have been so good for so long and then suddenly have gone down hill. I have killed off the Fungal issues but the ecoli has now grown to high levels. I am starting antibiotic treatment but think this is going to be a very long road back to health.
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Jill1947



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PostSubject: Re: Reading and Resource Articles from other Expert Sites   Fri Apr 01, 2016 8:48 pm

A researcher in the UK has found a mix of bugs in the urine of both IC patients and healthy controls that suggest the possibility of future treatments involving drugs that optimise the bladder microbiota.
Have just skimmed through this very interesting thesis which draws some similar conclusions. http://ecommons.luc.edu/cgi/viewcontent.cgi?article=1726&context=luc_theses

“ Given that urinary tract infections are likely the result of an imbalance amongst factors of the host immune system, pathogens and commensal bacteria that shape the environment of the urinary tract, studying these different aspects in the context of one another will give us a better understanding of who is at risk for infection and potentially will lead to new therapeutic options and/or prevention strategies.”

NB. Yet another scientist finding the bladder not a sterile
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Tina2



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PostSubject: Re: Reading and Resource Articles from other Expert Sites   Sat Apr 02, 2016 8:53 am

Thank you, Jill, I also have skimmed through it but it seems to back up the new thoughts on IC that it is some sort of bacteria. Maybe we should all print off the link and hand it to our GPs and Uro's the more people that learn we might be heading down a new road in the treatment of IC the better.
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barjammar

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PostSubject: Yeast infection - fluconazole doses etc.   Mon Apr 04, 2016 2:00 pm

Tina2 wrote:
I have fibromyalgia as did my late brother. I am trying to work out the link between bacteria in the bladder and fungle issues. I have been on 50g of Fluconazol for close to 18 months and it was a huge help but now I seem to have become resistant to it and it is no longer working and I am back to square 1. Tried Nylstat but it did nothing and tried increasing the fluconazol to 100g a day but did nothing. I find I am exhausted at trying to cope on a daily basis with my IC. I believe many have IBS as well as migraines.
We will have to address "yeast infection" in this forum.  Everyone has some yeast and I have to admit that I do try using fluconazole sometimes.  However, blaming everything on yeast infection is unscientific and has not been shown to make any difference in properly controlled trials.  I recall a great amount of enthusiasm for that diagnosis in USA back in the '90's.  I always thought it was a fad.  Lets review the latest evidence on this for you - but I expect there is none.
Cool
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Tina2



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PostSubject: Re: Reading and Resource Articles from other Expert Sites   Tue Apr 05, 2016 10:14 am

Hi Barjammer, I had confirmed yeast infections for years, given treatment and it went away but always came back shortly after stopping treatment. Having been on the Fluconazol for an extended period seems to have finally killed it according to the tests I had done in the US. This is interesting from the point of view that there is thought again in the US that those that have a bacterial base for there IC -BPS, if they are able to kill off one of the bugs it then leaves space for the other bugs to take over. This might explain why I felt so much better for so long on Fluconazol, the yeast was being killed off but now the ecolie has spread and taken over the space the yeast left, so again I feel pretty awful. There is also discussions on line about Biofilm that forms a coat over the bacteria making it difficult for antibiotics to get to the bugs so you have to kill off the biofilm first. It sure is a very complex problem, and we are all so lucky to have someone like you willing to take on the challenge. Thank you.
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Strandsidemol



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PostSubject: Re: Reading and Resource Articles from other Expert Sites   Tue Apr 05, 2016 3:10 pm

It really could be that some of us have lyme bladders. Interesting research into co imfections and how they are spread.
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IC Queen



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PostSubject: Re: Reading and Resource Articles from other Expert Sites   Wed Apr 20, 2016 6:42 am

Wondering why barjammer uses fluconazole sometimes. Surely no IC.... On occasion I use a bit of Terazol. Just a tiny touch of yeast seems to exacerbate my IC. And always found a dab of Terazol to be soothing to the vulvodynia as well. But I was desperate enough in the 80's actually to try the cure for that yeast fad. No help whatsover. Another get your hopes us, big waste of $.
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IC Queen



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PostSubject: Re: Reading and Resource Articles from other Expert Sites   Wed Apr 20, 2016 6:44 am

Typo above..get your hopes up, not us. Sorry. No sleep.
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Tina2



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PostSubject: Re: Reading and Resource Articles from other Expert Sites   Wed Apr 20, 2016 7:13 am

I have had yeast issues for years and it made the IC considerably worse. I was given yeast medication that "clear" the issue - or so the docotrs thought but it always came back and each time it came back it was worse and harder to get rid of.
Eventually I went on to Fluconazol for close to 18 months 50g a day. Now all traces of yeast are finally gone. IC is still not good, but there is one theory that once you get rid of one bug the space left by that bug is then taken over by another bug that is already in your system. This is why some doctors in the US are looking at a more multi treatment type attack. I would like to be on long term antibiotics as I know I have high levels of ecoli but cant find a doctor in Aus willing to give me long term antibiotics.
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dantheman



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PostSubject: Re: Reading and Resource Articles from other Expert Sites   Wed Apr 20, 2016 8:25 am

one thing ive learnt is the highly variable nature of this disease. And there are different types of ic.i What works for one doesn't for another. We all need to try everything and any thing i think. One woman was allergic to mould and so she moved house and away from the mould and her IC symptoms diminished
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Tina2



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PostSubject: Re: Reading and Resource Articles from other Expert Sites   Wed Apr 20, 2016 8:43 am

Dan you are absoloutly correct, and I think this is the reason many GPs dont want to deal with IC. There is no quick fix, here take this and it will be gone. I have said this before I know but I think we all have the "basic" symptoms - Pressure pain, frequency, urgency, burning around the vulva and on passing urine, then it falls into different groups.
Then you have the added complication of having people who also have recognised illness for example, Migraines, sinus, IBS, Fybromialgia, and yes even Lyme.


Last edited by Tina2 on Thu Apr 21, 2016 6:34 am; edited 1 time in total
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IC Queen



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PostSubject: Re: Reading and Resource Articles from other Expert Sites   Wed Apr 20, 2016 8:52 pm

If I had to guess, I think half of the people with IC I have met have back pain along with the other symptoms, something I have never had. I went to many national mtgs. with probably up to 300 plus IC pts. It was amazing how fast we bonded. I have photos of groups of us lined up with our arms around each other. My "normal" friends think these are long ago great friends, but in most cases we only sat next to each other in a mtg. and I didn't even know their names. A neurologist told me that the back pain was probably just a result of the same cause, but just a different way of feeling the nerve pain.
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