Interstitial Cystitis Expert Forum
Severe Cystitis Infections or Interstitial Cystitis??
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Severe Cystitis Infections or Interstitial Cystitis??

I am having some problems with cystitis for the past two months. From late October - early November I was diagnosed with a UTI with the infecting organism found to be "Citrobacter koseri". The only symptom I had was a frequent urge to urinate and very mild pain (heavy feeling) in the pelvic area. The doctors found this all to be very strange. I took an antibiotic containing Ciproflaxicin for 10 days and there was no change. I went to another urologist and he said to take Furolin for another 10 days however I had a reaction to the Furolin and so I was admitted in the hospital to take the antibiotics via IV drip and to have a cystoscopy. From the exam the urologist found that 1/3 of my bladder had "nests" of infections with a mild chronic swelling of the bladder walls and cauterised the area so as to speed up the process. I was in the hospital for 5 days taking 3-4 antibiotics (very strong). Biopsies and more technical tests were conducted. From the bladder lining taken many staphylococcus hominis bacteria were found. I took antibiotics until 13.11.2008 (tablets - Selexid and Bactrimel) and in the next 2 days will have another urine sample taken. The problem is that while the symptoms have improved they still remain and I am very worried. Cancer and other serious neurological diseases have been eliminated but why do I still not feel 100%. Is there a chance that it is Interstitial Cystitis and there has been a misdiagnosis or just a bad case of bacteria attacking my body? It is the first time in my life that I had a UTI/cystitis. Also in August I was in the hospital again with EBV and again very serious infections (I had a CRP of 3.8 and they couldn't find an antibiotic to treat me as the fever would not fall). Are these linked? Has my immune system totally failed? Please help!
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Hi, this sounds like a persistent infection, or a series of frequent recurrent infections.  You have positive cultures.  Some patients have a chronically infected bladder wall and the infection is very deep and can hide from antibiotics.  You may need to be on months of suppressive antibiotics to control the infection. This does not sound like Interstitial Cystitis, and you can't make the diagnosis of IC when a urine culture has recently been positive.  Most IC studies require you to be infection free for at least 6 weeks before the diagnosis can be made.  You sound like you are very susceptible to infections and may need to see an expert in infectious disease.  Good Luck.
2 Comments
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You might be interested in some research done by Dr. Hultrgren in St. Louis, Mo.
This doctor found biofilm infections in the bladders of rats.  Though he does correlate these biofilm infection with IC they usually don't show up on standard cultures.

I actually have an article on IC vs. Chronic Cystitis on our website, a support group for IC patients in MO and Ark.

I have a IC and a Chronic kidney infection so diagnosing my IC took longer...,
however the antibiotics did nothing to relieve my IC symptoms.  My URO treats many chronic UTI patients and for some it can take many months on antibiotics to totally clear up the infections.. more the n likely this infection went on untreated initially for quite a while.  However over time and with patients he does see many of these patients totally cured from their chronic infections.  The good news is the unlike IC chronic cytitis is curable... just hang in there.

There are some things you can do to help as well, WHILE YOU ARE TAKING THE ANTIBIOTICS AND OF COURSE TALK TO YOU DOCTOR ABOUT ANYTHING YOU TAKE OR TRY...I am not a doctor, but can tell you what I have found
that has helped me and others who struggle with infections.

Whether you have chronic cystitis or IC, your bladder is inflamed and irritated
avoiding things that make it worse can help a lot: caffeine, tomatoes, soda, acidic foods, including cranberry, alcohol and smoking.

Drink lots of water... and honestly distilled or purified water is best, some wells, can contain bacteria as well as things like lime etc. and city water is chlorinated which can irritated the bladder too.

Cranberry is one of the things that we all here is so great for bladder infections but in an inflamed bladder it can make your symptoms worse.  One suggestions is to try something called D-Mannose.  It has the sugars in the cranberry or blueberry that keep the bacteria from attaching to the bladder wall without the acidity!!

There are several naturals that can helps as well... one that has helped me that you might want to look into is called Silverbiotics by American Biotech Labs.  Personally for me this product means the difference between being on IV's or my urine being clear,,, but my condition is more complicated by MSK and chronic kidney stones.
However they have a lot of research on this product that you can take to your doctor as well.  

Again, keep in mind I am not saying to do these instead of taking the antibiotics you doctor recommends, I am doing them a long with, and anything I take is discussed with my doctor as well.

If you need any more info on the above or would like info, on the article I mentioned just pm me!

Shelly Matthewson
Private Medical Researcher
IC Support Group Leader
Director of MOARK IC
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