Friday, March 22, 2019

Lyme caused my Interstitial Cystitis (IC)

In sharing my experience for the February article, What Causes Interstitial Cystitis? How 10 Women Got to the Root of Their Bladder Pain, by Suzannah Weiss for Bustle, I was asked, "How did you find out your IC was due to Lyme?" 

I thought I'd share my answer here, in case it can help someone. In the article, which deftly weaves together the stories of all 10 patients, I am the Dana that is mentioned somewhere in the middle. 

The short answer is that my LLMD told me so—based on his years of experience with patients.

The medium answer is that I saw evidence of it as the antibiotics that helped me heal from my Lyme ALSO eventually eliminated my IC symptoms.

The long answer includes dates/timeline:
  • In November 2011 I presented with so much blood in my urine that a doctor and a nurse each commented they had never seen so much; usually blood in urine is microscopic. (My specimen cup looked like raspberry lemonade.)
  • While my doctors then did not diagnose IC, I had Googled “prostatitis for women” based on my symptoms being so similar to my late dad’s prostatitis. I found IC. Bought the book “You Don’t Have to Live with Cystitis” by Dr. Larrian Gillespie, and immediately followed the extremely restrictive diet. I also created the website Confessions of a Chocoholic about the diet and some of my early experiences. 
  • At the end of February 2012 a new doctor diagnosed IC. As a result, I began being seen in a woman’s clinic with several new doctors and caregivers, including a urologist, an OB/Gyn, a chiropractor, a physical therapist, an acupuncturist, and a nutritionist. 
  • My restrictive diet gave me back some mobility. When I first became ill, I couldn’t travel since I had to void every twenty minutes. By summer 2012, I could go about an hour, which meant I could more easily travel to doctor offices, and that I could finally travel an hour to my sister-in-law’s to participate in expanded family activities. (I was particularly loyal to the diet since the urologist suggested a couple operations involving either expanding my bladder or removing it in order to solve the IC symptoms; neither sounded acceptable to me, so I decided to give the diet a chance.)
  • In June 2013 I cut myself and it quickly became infected. As a result, I was put on heavy duty antibiotics…and almost instantly felt great. My physician assistant ordered a lyme test since I shouldn’t have felt good on these particular antibiotics. The test wasn’t itself conclusively positive, but combined with my history of illnesses that extended to 2005, she consulted with the area’s LLMD and together they decided to treat me for Lyme. I “enjoyed” the herx process, which I soon recognized as a positive sign that the meds were working. I had developed a number of other autoimmune disorders since the November IC symptoms had begun, and my herxing experience was that my latest illnesses were first heightened and then gone, such that IC was one of the last to be finally cleared away.
  • Today—and for the past several months—I am battling Lyme again. My fifth bout of it. This particular turn has my IC flaring something horrible. I am using natural tinctures and supplements, plus a moderately restrictive diet, to treat it this time (with the help of a natural wellness specialist) rather than the antibiotics, which eventually seemed to tire my gut. I have to admit that my current stress levels have meant that I keep caving to cravings (sweeteners like honey & maple syrup), which has slowed my progress. Am only human, I guess…. But I need to stop feeding the Lyme sweeteners. I am hoping I can get back on track this month.
Thanks for asking! Good luck with the article. And feel free to ask additional questions. I’ll try not to be so verbose. 

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