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Lyme Disease and Interstitial Cystitis

If you are an IC patient not improving with treatment, it’s time to be proactive and ask “Why am I getting worse?” and “Could something else be contributing to my pain? (i.e. pelvic floor dysfunction, UTI, candida, etc. etc)”  The AUA Guidelines for IC/BPS clearly state that if a patient is not responding to treatment and/or is progressively getting worse, it’s time to revisit the diagnosis. And, for some patients, revisiting that diagnosis requires a look at rarer causes of bladder symptoms, such as Lyme Disease.

Megan is a forty something mother of three who had disabling bladder symptoms and pain for five years. She said “I couldn’t sleep, shop, drive or go anywhere without having to use the bathroom.  I didn’t want to leave my house.”(1)

After her diagnosis with IC, she read about a possible connection to Lyme. Ironically, she had had numerous Lyme tests done in the previous fifteen years, all of which were negative. She offered “I learned that the tests used by doctors (ELISA, Western Blot, Spinal taps) are often unreliable to diagnose lyme and co-infections.  Other blood tests  were ordered for me (CD 57, Fry Test and IGENEX Western Blot) and sure enough I tested positive for lyme, a bacteria infection and protozoa infection.” She believes that these infections caused her bladder disease.

Lyme disease is caused by a bacteria called Borrelia burgdorferi (B. burgdorferi) that is transferred to humans through the bite of a blacklegged tick.(2)  A spreading “bulls eye” rash is typically found in 70-80% of infected patients. Early symptoms include body wide itching, chills, fever, headache, fatigue, muscle and joint aches and swollen lymph nodes. Abdominal pain, diarrhea, vomiting, cramping can also be present.

When untreated, the borrelia bacteria spreads throughout the body where it can cause paralysis of the face muscles (Bell’s palsy), muscle pain and weakness, swelling of large joints, severe headaches, sleep disturbance and heart palpitations. Abnormal muscle movement, numbness and tingling, speech problems, decreased concentration, memory disorders and nerve damage are all signs of more advanced infections.

Bladder symptoms have been reported by patients struggling with Lyme disease, including frequent or painful urination and/or symptoms consistent with a bladder infection. IC Researcher Michael Chancellor found B. burgdorferi in bladder biopsy samples early in his career. (3)

Megan’s bladder symptoms improved dramatically after receiving treatment for her lyme disease. She shared “I started antibiotic therapy June of 2012.  After six months I have my life back.  I will be in treatment for at least a year…. I am not 100% yet but my bladder is better.  The urgency, frequency and most of all the pain is gone.  I recently took a 2 hour car ride and did not have to ask my husband to stop so I could use the bathroom!  That was quite a moment for me.”

Lyme disease activists have been quite vocal in suggesting that IC could be caused by Lyme but no credible study has found active infection in a large population of patients. (Remember the DIPP Mystery study released earlier this year by the MAPP Network? They did not find active infection in the urine of IC patients.) That said, that doesn’t mean that a past infection might have been a triggering event. Researchers in Finland studied fifty IC patients to determine if they had antibodies against B. burgdorferi. IgG antibodies were found in only four out of 50 samples (8%), slightly higher than the control material (2%). Interestingly, bladder biopsies taken from the 4 patients were negative for borrelia DNA and none of these patients had any symptoms consistent with Lyme Disease. They concluded “These results indicate that persistent infection of B. burgdorferi has no role in the etiology of IC. On the other hand a connection with a past borrelia infection and IC is not excluded.”

For the IC patient trying to solve the mystery of their chronic bladder symptoms, it is certainly reasonable to request lyme disease testing, especially if you have suffered a tick bite, and/or live in an area with high lyme disease. Megan wrote “I have been to doctor after doctor for all of these years and no one could figure out what was wrong with me.  If only I would have known to make an appointment to see a LLMD (lyme literate doctor) I may have found answers many years ago.” 


  1. Personal Correspondence
  2. Centers For Disease Control and Prevention, Lyme Disease Information Center – Accessed 8/11/16
  3. Chancellor MB, McGinnis DE, Shenot PJ, Kiilholma P, Hirsch IH. Urinary dysfunction in Lyme disease. J Urol. 1993;149:26–30.
  4. Haarala M, et al. The role of Borrelia burgdorferi in interstitial cystitisEur Urol. 2000 Apr;37(4):395-9. [PubMed]
By |2017-01-18T12:01:25+00:00August 11th, 2016|Front Page Feed, Interstitial Cystitis Network Blog|Comments Off on Lyme Disease and Interstitial Cystitis

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About the Author:

My Google Profile+ Jill Heidi Osborne is the president and founder of the Interstitial Cystitis Network, a health education company dedicated to interstitial cystitis, bladder pain syndrome and other pelvic pain disorders. As the editor and lead author of the ICN and the IC Optimist magazine, Jill is proud of the academic recognition that her website has achieved. The University of London rated the ICN as the top IC website for accuracy, credibility, readability and quality. (Int Urogynecol J - April 2013). Harvard Medical School rated both Medscape and the ICN as the top two websites dedicated to IC. (Urology - Sept 11). Jill currently serves on the Congressionally Directed Medical Research Panel (US Army) where she collaborates with researchers to evaluate new IC research studies for possible funding. Jill has conducted and/or collaborates on a variety of IC research studies on new therapeutics, pain care, sexuality, the use of medical marijuana, menopause and the cost of treatments, shining a light on issues that influence patient quality of life. An IC support group leader and national spokesperson for the past 20 years, she has represented the IC community on radio, TV shows, at medical conferences. She has written hundreds of articles on IC and its related conditions. With a Bachelors Degree in Pharmacology and a Masters in Psychology, Jill was named Presidential Management Intern (aka Fellowship) while in graduate school. (She was unable to earn her PhD due to the onset of her IC.) She spends the majority of her time providing WELLNESS COACHING for patients in need and developing new, internet based educational and support tools for IC patients, including the “Living with IC” video series currently on YouTube and the ICN Food List smartphone app! Jill was diagnosed with IC at the age of 32 but first showed symptoms at the age of 12.