Today I’d like to share another success story in the form of an interview with Kimberly.
Kimberly’s IC in fact turned out to be a chronic infection, which was diagnosed with new DNA testing methods and at long last she was able to receive the treatment she needed to get well.
Kimberly feels very strongly about next generation sequencing testing from MicroGen and highly recommends it, however, to avoid disappointment I’d recommend to anyone thinking about doing this kind of testing to read my last post about new testing methods and to not waste your money unless you have a practitioner who can work with the test results!
Also bear in mind that Kimberly lives in the US and therefore her advice on receiving testing only applies to people also living in the US (MicroGen is not currently available outside of the US).
That’s it from me for now, I hope you enjoy Kimberly’s story!
L: When did you first get IC and what triggered it? How did you get diagnosed?
K: My IC disease story begins and ends with a series of infections over the course of 40 years. Today I live a pain free, healthy life as a result of always believing I could beat the disease.
I had bladder irritation issues as a teenager. I saw my first urologist at age 20 in 1977. It was physically and emotionally traumatic – he placed a catheter in my bladder without warning to withdraw sterile urine and I was horrified and very uncomfortable. He found no infection and offered no assistance. As a young college student, I felt deep despair. Little did I know that I was beginning a difficult journey that would alter my life in so many ways.
I am now aware that I contracted Lyme Disease and Bartonella henselae (also called Cat Scratch Fever) at about age 15. Bladder irritation is common with Bartonella so that may be the cause for my initial frequent urination. It would be decades before I learned that Lyme/Bartonella existed in my body. I was also to learn that many other infections and physical conditions were affecting my bladder.
In the initial years of IC disease in my 20s, I saw 2 regular additional urologists. Neither knew much of anything about IC Disease. The first used a metal rod to stretch my urethra to “make it larger” and allow better drainage to avoid infections. It was physically and emotionally traumatic. I would later have to have EMDR psychological therapy to cope with the traumatic memories of him doing that procedure, even though he had the best of intentions. It was done multiple times without anesthesia. I eventually saw another urologist who decided to do surgery. My urethra was cut open in three places. Again, he was working on the theory that I had traditional bladder infections and my “tiny” urethra was keeping me from emptying my bladder completely. I don’t believe either the urethral stretching or the surgery was necessary and I would never recommend it to anyone with IC disease. These well-intentioned doctors simply didn’t know what else to do.
I was fortunate to be living in San Diego during my first decade with IC. After trying the two standard urologists, I was eventually diagnosed with IC and treated with steroid/Heparin/DMSO bladder instillations at Scripps Research Clinic (in addition to the inclusion of the anti-depressant Amitriptyline and histimines to lower mast cells in the bladder.) The bladder instillation treatments worked quite well for me as long as they included steroids. Scripps Research Clinic had the most up-to-date info on IC Disease and the doctors there were enormously helpful. Dr. Larrian Gillespie had published her book on the IC diet by that time (You Don’t Have to Live with Cystitis.) I stopped drinking coffee, soda, alcohol, acidic foods/drinks and did quite well as long as I could have 6 bladder instillations in 6 weeks when symptoms returned. I did that about three times per year for several years. I was able to live a fairly normal life by restricting diet/drinks and using the instillations as needed. I experienced complete remission throughout two pregnancies. I also did occasionally get simple bladder infections that were addressed easily with standard treatments.
Unfortunately, at age 29, my new husband gave me the STD chlamydia trachomatis (which he was unaware he had.) It started a more intense cycle of severe bladder pain with no obvious cultured infection. It took 18 months for both my husband and I to be properly diagnosed and treated. I believe it deteriorated my bladder wall significantly. I continued my bladder instillations and medications in an attempt to reduce symptoms.
Ironically, I would later read that a doctor found a statistical correlation between Chlamydia Pneumoniae and IC Disease (http://www.mc.vanderbilt.edu/reporter/index.html?ID=1510). I tested positive for this form of Chlamydia, as well (primarily begins as a lung infection.) I would eventually be treated using three different antibiotics for a nine month period and went into a long remission from IC Disease. We know now that infections can bury themselves under a biofilm deep in the bladder wall for long periods of time (and go undetected on standard urine cultures.) So my current understanding is the two initial infections – Bartonella and both forms of Chlamydia – damaged my bladder wall and left me susceptible to other urinary tract infections and issues.
L: How did your friends/family react to your illness and did you get much support by them?
K: Both of my parents were gone & I was living away from friends and family due to my husband’s employment. It was very, very difficult to be young and have very little help. There was little internet access in the 1980s so I had to literally seek out medical textbooks for information. We moved to the east coast and I lost the wonderful support I had gained at Scripps Research Clinic in San Diego. When internet information did begin to be available, I had the great good fortune to seek out the help of Amrit Willis, who wrote Solving the IC Puzzle. I paid her for private consulting, primarily on diet and the use of calcium and baking soda to alkalinize the body. Later, when I moved to Portland, Oregon, I would meet Wendy Cohen, author of The Better Bladder Book. We had many long conversations over herbal tea on how to address bladder issues. Both Amrit and Wendy are now free of IC Disease (using primarily natural methods and diet alterations.)
As the years went by, IC Disease did continue to alter many aspects of my life (although I did have periods of remission that lasted up to five years at a time.) I was a professional speaker for 12 years traveling the United States. For some reason, airplane flights trigger bladder symptoms. I eventually had to stop doing that job because of the bladder flares. I would wake up in a city with an intense flare and have to stand on a stage speaking to audiences as large as 300 people. I used Oxybutynin and Pyridium to make it through the day, but it took a large toll on my health. Sex with my husband was always an issue, as well. I feel fortunate to have had an understanding, caring spouse.
L: Can you describe your journey getting better? What did you do and what prompted you to do it? How long did it take until you got better?
K: Dietary changes, bladder instillations with steroids/Heparin/DMSO, Amitriptyline/histimines and treatment for chlamydia pneumonia and chlamydia tractomatis and eventually Lyme/Bartonella kept me going for many years. I added pelvic floor therapy as needed, which also was a great help. I had long periods of remission when I was able to drink soda and occasional alcohol. I was able to fly again without incident. If I experienced a flare, I would immediately seek screening for infection and begin bladder instillations.
L: How are you now?
K: My life changed dramatically when my current Naturopath in Portland, Oregon met Ruth Kritz, RN, at a conference last year. Ruth has a practice in Washington, DC where she treats interstitial cystitis exclusively. She informed him of the DNA testing (PCR) being done by MicroGen Labs. I happened to be in the middle of an IC flare & receiving steriod/DMSO/Heparin instillations by my Urologynecologist even though I was positive I had an infection (cultures were negative.) The MicroGen Labs testing ordered by my Naturopath showed HIGH levels of enterococcus faecalis (proving that the standard cultures are often inaccurate.) The testing information gives the correct antibiotic to use as well as listing those you are likely resistant to. Ruth advised my Naturopath that I would need a longer than normal treatment time with the antibiotic and the use of a biofilm buster. Again, the theory is that the infection buries deep into the bladder wall under a biofilm & is therefore undetected by traditional culture methods. I used Interfase Plus as the biofilm buster. There are many forms of biofilm busters but Interfase Plus includes EDTA, which is particularly effective at eliminating the biofilm (available on Amazon.) Ideally, the biofilm buster is taken 30 minutes before the antibiotic. After 14 days of taking the MicroGen recommended antibiotic with a biofilm buster, I went from Level 10 pain to zero. (I stopped the steroid/Heparin/DMSO instillations immediately when I learned I did have an infection.)
My Naturopath had me retest with MicroGen two weeks after completing the antibiotic. I still showed “medium” levels of enterococcus faecalis. Apparently, many people have to continue treatment with antibiotics and MicroGen testing several times to completely eliminate the pain and infection from deep in the bladder wall. For some reason, my pain has never returned after the first treatment even though a continued (but lessened) infection did show up on the second round of MicroGen testing.
I believe my immune system likely took over and eliminated the remainder of the infection since it was now released from the biofilm. Ruth advised my Naturopath that many people succeed by having the antibiotics converted to a liquid form and instilled directly in the bladder. She also stated that different types of infections can appear on MicroGen retesting as they release from the biofilm. It’s been a year of wonderful pain free life following this treatment! I am drinking Tyler’s no acid coffee, occasional alcohol and soda. I can go 4-6 hours without visiting the bathroom. I sleep through the night. I am still careful with diet since I am unclear whether my bladder lining is fully repaired after all these years but for now – I believe I am cured of IC disease.
L: What are your tips for anyone suffering from IC?
K: Immediately get tested by MicroGen. If you call the company, they will tell you the names of doctors testing near you and/or give you the name of your local sales rep. They take insurance – you simply include a copy of your card with the order. If you have to travel to find someone, don’t hesitate to do it. Be sure to relay to the doctor that you need a minimum of 14 days of antibiotics & biofilm busters. If they don’t understand biofilms, have them read the information on the MicroGen website – it explains it in detail. You can also just order Interfase Plus from Amazon and use it safely with the antibiotics. I have since confirmed through reading research that standard bladder cultures are highly inaccurate (as currently used by urologists and general practitioners.) Standard urologists don’t seem to have developed any new treatments in the 30 years I have struggled with this disease.
I am fortunate to now live in Portland, Oregon where we have a Naturopathic college and many talented Naturopaths (who are legally allowed to prescribe antibiotics.) In addition, there are many herbal treatments (including Chinese medicine) that have solved the IC puzzle for other people. Don’t let a negative culture stop you from considering that your symptoms could be caused by an infection. If necessary, consider DNA Connections PCR testing for Lyme and Bartonella. Many, many people develop bladder irritation and pain as a result of these infections, as well. Dr. Rawls, the developer of The Vital Plan, can help you treat Lyme/Bartinella without the use of antibiotics and without breaking the bank.
Fight for yourself & be willing to think outside the box.
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