“I am an IC patient who has worked with Dr. Fugazzotto (who died in 2008) and who has sponsored research into his work and findings. He worked in his home lab after retiring and spent his time culturing for patients who sent him specimens. It was his belief that typical lab culturing was not adequate to find many species of bacteria and so he used a broth culture which had been used for years but fell out of use when the agar plate testing was developed. There is still one lab, United Medical Lab, near Washington DC that will perform broth culturing for patients. Many patients are diagnosed with interstitial cystitis when no bacteria are found, and yet using a broth culture he was usually able to isolate a pathogen. He believed the main culprit to be Enterococcus, a form of Streptococcus.
I am sure I have passed this information on to you in the past. I just recently read your section on E. coli infections and the possibility that the bacteria form biofilms which enables them to hide from treatment or host defences. I wanted to forward to you an article about Dr. Scott Hultgren of Washington University in St. Louis, MO. He is the best-known UTI researcher in the US and you have probably heard of him. I subscribe to an online newsletter and they had an article about his findings of biofilms in the case of E. coli: http://www.biofilmsonline.com
He has not published any more data about his findings of other types of bacterial biofilms in the bladder but I read an article by Japanese researchers several years ago that described their finding of enterococcal biofilms in urinary tract patients: http://escholarship.lib.okayama-u.ac.jp
They have not made a connection between Enterococcus or any other species of bacteria and IC but many of us believe that we harbour other types of bacteria that can also form biofilms. It is my understanding that all, or almost all, kinds of bacteria are capable of forming biofilms. The NIH claims that 80% or more of infections are biofilm-related. Therefore, it is very probable that UTIs involve biofilms and I would carry it one step further and say that it is probable that IC is also caused by uncultured bacteria hiding in biofilms in IC patients. According to the Japanese, biofilms can be polymicrobial.
In our research into Dr. Fugazzotto's findings we confirmed that Enterococcus was found more commonly in IC-diagnosed patients.:
This was presented at both the American and Canadian Societies of Microbiologists meetings. We have not been able to publish this paper as yet, and as you know medical research takes a long time to make it to the physicians in clinical practice. As biofilms become more well-known the medical community may make the connection. Current culturing is not adequate and if it were they would find more species of bacteria in all patients symptomatic patients would not be put in the IC category and could be treated for any type of bacteria found. The remaining issue is that those bacteria still in biofilms are not treated since the antibiotics cannot penetrate the films. We know many are working on substances that can break up a biofilm. One being used by some practitioners is EDTA. There are a few others but this is a huge challenge right now.
I wanted to pass this information on to you since I know you are trying to help treat the many sufferers of UTIs. I think Dr. Hultgren will eventually put all of the information and research together although so far he has not revealed anything further than the finding of E. coli biofilms. He has a large research facility that recently opened and I understand that he is going to do a study of IC patients and possible infections. He has published this much as far a I know: http://mednews.wustl.edu
If you read through this article you will see that he mentions interstitial cystitis as one of the infectious diseases being studied. This is the first time I have seen a prominent researcher refer to IC as an infection although he has not published any research to show how he determined this connection.
I am passing on the above for your information. If you have any comments about my speculations I would appreciate hearing from you. It is very difficult for us to make any headway with the medical establishment but there are many of us who believe in the IC-bacterial-biofilm connection. We have an MD in Texas who does biofilm research and is treating diabetic wounds in which he finds biofilms and has offered that his lab will do a study if we can provide biopsies from IC patients. He has a method of detecting biofilms in biopsy material but we have not been able to find doctors who are willing to provide the biopsies. I am sure we will eventually. He was not familiar with IC but he told us that any time you find chronic symptoms and inflammation there is a good chance there is a biofilm infection.
I am very impressed with your work and thorough explanation of E. coli infections. I just thought I would let you know what other information some of us have gathered involving IC as an infection also.
M. Foster, Patient Advocate and Research Sponsor
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