Whether you’re newly diagnosed or a grizzled IC veteran, you’ve probably seen more than just a few disagreements in the IC world. What treatment works? What’s the best diet? Do subtypes work? Flash back 20 years and there was one single question that dominated every IC support group meeting. Is IC caused by infection?
Though urine tests usually ruled infection out, microbiologist Dr. Paul Fuggazotto believed that most patients with IC had what he called a fastidious, chronic infection. Infections that he believed were very small and deep in the bladder wall that could not be identified easily. In the 1980’s and 1990’s, he ran a laboratory (the Cystitis Research Center) in South Dakota where he championed the use of a broth culture to identify potential infections. Hundreds if not thousands of IC patients, myself included, sent urine samples to him for testing.
Dr. Fuzzy, as we fondly called him, was in his late 70’s when I met him. With great determination and obvious frustration, he attended almost every IC research conference where he pled his theory to the national IC research community. While they treated him with respect, he didn’t gain their support because there was concern that his testing methods could result in false positives. He reused glass vials that he sent to patients around the country. Though they were sterilized in an autoclave, studies have revealed that some bacterial biofilms survive heat sterilization.
Dr. Susan Keay at the University of Maryland, the top IC research center at the time, conducted studies to look for bacteria and while she found no consistent pathogen among IC patients, she did find a protein (the anti-proliferative factor) in the urine of IC patients that appeared to inhibit bladder healing and cell proliferation.(1) Her study pretty much ended the discussion of bacterial infection among the elite IC researchers though Dr. Fuggazotto had a strong and vocal group of patients and laboratories who kept promoting his theories.
A few years later, the Lyme Disease community aggressively pushed their theory that many patients with IC had a bladder infection caused by Borrelia burgdorferi, a type of bacterium that is carried by deer ticks.(2)Lyme disease patients have long reported bladder pain and symptoms. IC researcher Michael Chancellor was the first to identify Borrelia in their bladders very early in his career.(3) Again, hundreds of patients paid for Lyme disease testing and most patients had negative results, myself included. (Out of an abundance of caution, any patient who has been exposed to ticks should be tested for Lyme Disease.)
The MAPP Research Network discovered that many IC patients strug- gling with flares had an overgrowth of the fungus candida in their urine.(4,5) Traditional urine cultures do not screen for fungi. Of course, there’s a very good chance that they, or their physicians, guessed that they “might” have had an infection and prescribed antibiotics creating the perfect environment for these fungal infections to persist.
Not to be left out, viral infections may play a role in patients who struggle with Hunner’s lesions. Researchers in Europe discovered that HL patients appeared to have the Epstein Barr virus and/or the Polyoma BK virus.(6,7) Of course, an antibiotic would have no effectiveness against a viral infection.
In recent months, the bacterial debate has re-emerged on, of all places, Twitter. English researcher Dr. James Malone-Lee joined the platform in December 2018 and has been an outspoken proponent on the role of bacteria in patients with urinary symptoms who have negative urine cultures. With more than 180 published scientific papers, much of his research focused on chronic bladder inflammation where he made a number of significant findings. He believes that:
- Quantitative microbiology applied to the routine midstream urine tests (MSU) miss many genuine infections.
- The dipstick tests for leukocyte esterase and nitrite are substantially worse than the culture methods. He states that these tests should not now be used to exclude urine infection.
- Microscopy of a fresh unspun, unstained specimen of urine, to count the urinary leucocytes is the best test for urine infection but it will miss about 40% of infections.
- Many persons with lower urinary tract symptoms are living with chronic infections that go untreated because of contemporary guidelines.
- Many urine infections are caused by mixed colonies and mixed growths are associated with impor- tant independent markers of urinary tract inflammation and infection.
- Many urine infections involve intracellular bacterial colonisation of the urothelium by mixed pathogens that are fastidious and extremely difficult to treat by conventional methods.(8)
His most recent study found that patients who had pus in their urine and who were treated with long-term antibiotics, despite a negative urine culture, responded well to antibiotic therapy. If the antibiotics were stopped, most patients reported that their symptoms worsened and inflammation increased.(9)
So, who are you supposed to believe? Could you have a chronic bacterial infection?? Should you be treated with antibiotics?? Could you have a fungal infection?? How about that very small group of lesion patients who might have a viral infection?? Certainly, they can’t all be right, right?
From the urinary tract to the reproductive system, pelvic floor muscles to nerve dysfunction, patients and their doctors have to thoughtfully exclude other conditions to solve the mystery of their pelvic pain.
It’s the “all or nothing” theories that fail completely. We are long past the days of believing that IC is a “bladder disease” in every patient. Today, we think of it more as a pelvic pain syndrome and there are many potential triggers for the symptoms we associate with IC. From the urinary tract to the reproductive system, pelvic floor muscles to nerve dysfunction, patients and their doctors have to thoughtfully exclude other conditions to solve the mystery of their pelvic pain. If you struggle with very painful periods, it’s impor- tant to rule out fibroid tumors and/or endometriosis. If you have suffered a significant pelvic injury, then an examination of your pelvic floor is critically important. Do you have supersensitive skin or a wicked sense of smell? Then you might have some central sensitization going on, like I do.
Could some IC patients have chronic infection?? Yes and the new Next Generation DNA urine test (bladderhealth.org) has revolutionized the identification of potential pathogens though Dr. Malone-Lee doesn’t believe that these accurately identify causative pathogens either. But if you’re curious, this test will identify good bacteria, bad bacteria and fungal pathogens. If you have Hunner’s lesions, you could also ask for a viral test. But you can’t put all of your eggs in the infection basket. In hindsight, I now know that the most of the antibiotics I’ve taken throughout my life for urinary symptoms would never have fixed my fundamental problems which, using the Payne IC subtyping system, are pelvic floor injury and central sensitization.(10,11)
Originally Printed in the Spring/Summer 2019 IC Optimist.
- Keay S et al. Bladder epithelial cells from patients with interstitial cystitis produce an inhibitor of heparin-binding epi- dermal growth factor-like growth factor production. J Urol. 2000 Dec;164(6):2112-8.
- Osborne J. Lyme Disease and Interstitial Cystitis. Interstitial Cystitis Network. August 11, 2016
- Chancellor MB, McGinnis DE, Shenot PJ, Kiilholma P, Hirsch IH. Urinary dysfunction in Lyme disease. J Urol. 1993;149:26– 30.
- Osborne J. Could IC Flares Be Caused by Candida. Interstitial Cystitis Network. January 6, 2016
- Nickel JC, et al. Assessment of the Lower Urinary Tract Microbiota during Symptom Flare in Women with Urologic Chronic Pelvic Pain Syndrome: A MAPP Network Study. J Urol. 2016 Feb;195(2):356- 62
- Jhang JF, et. al. Epstein-Barr Virus as a Potential Etiology of Persistent Bladder Inflammation in Human Interstitial Cystits/Bladder Pain Syndrome. J Urol Sept. 2019, Vol. 200, No. 3.
- Van der Aa F, et al. Polyomavirus BK–a potential new therapeutic target for painful bladder syndrome/interstitial cystitis? Med Hypotheses. 2014 Sep;83(3):317-20.
- Prof James Malone-Lee Profile, UCL IRIS. https://iris.ucl.ac.uk/iris/browse/ profile?upi=JGMAL68
- Swamy, S., Kupelian, A. S., Khasriya, R., Dharmasena, D., Toteva, H., Dehpour, T., Malone-Lee, J. (2018). Cross-over data supporting long-term antibiotic treatment in patients with painful lower urinary tract symptoms, pyuria and negative urinalysis. International Urogynecology Journal. doi:10.1007/s00192-018-3846-5
- Osborne J. IC Subtypes & Phenotypes. Interstitial Cystitis Network. January 16, 2017
- Payne C. A New Approach To Urologic Chronic Pelvic Pain Syndromes: Applying Oncologic Principles To ‘Benign’ Conditions. Current Bladder Dysfunct Rep. Topical Collection on Pelvic Pain. March 2015