IC Stories

Kimberly’s Story: DNA Testing Changed My Life

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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14 Comments

  • Reply

    KS

    May 21, 2018

    Glad to reply to comments.

  • Reply

    KS

    May 21, 2018

    Glad to reply to comments.

  • Reply

    JPJ

    May 21, 2018

    Thanks so much for sharing the details of your long, hard story Kimberly. As someone who has been dealing with infections & bladder issues without resolution, lots of negative cultures and dead ends for 3 years, I can’t imagine how frustrating it must have been for you. Well done on persevering and getting the results you have.

    Could I just ask why the hidden STD took so long to diagnose? Was it just because it wasn’t seen as a relevant thing to test for?

    Thanks again.
    JPJ

  • Reply

    Kimberly

    May 21, 2018

    Hi JPJ,
    The issue with the Chlamydia Trachomatis infection was the timing – it was 1985. My gynecologist suspected I had an STD because of the urinary frequency. The only test for that particular STD was not very reliable at that time. Men can be asymptomatic – which makes checking for STDs really important for any woman with urinary frequency. Once I was diagnosed, my new husband went immediately to his doctor to get antibiotics for himself. Would you believe his doctor told him he couldn’t have it if he had no symptoms? He was my only sexual partner so we knew this wasn’t true – but we just lacked the needed information and assistance. That was “back in the day” when I trusted all medical professionals. It was over a year before we learned through another physician that we needed to be treated simultaneously in order to end the cycle of infection. I will always believe the length of infection was what originally damaged the lining of my bladder.

  • Reply

    JPJ

    May 22, 2018

    Hi Kimberley,

    I see – shocking. Bizarrely I’ve experienced an almost opposite attitude now, where STD seems to be the very first suspicion once the dipstick & cultures are negative for UTI. I’ve been advised by two medical professionals to get tested again ‘just in case’ even after going through the process twice and getting no results. My bladder problems bagan after a severe skin infection followed by months of inconsistently administered antibiotics, but the relationship between overall microbe health and how antibiotics affect other areas of your body is so unrecognised by local GPs in the UK. I’m currently on the waiting list to visit Professor Malone Lee’s clinic in London who has been mentioned on this blog, so fingers-crossed.

    Thanks again for sharing.

    • Reply

      Candice SanPietro

      July 31, 2018

      I mentioned Dr. Malone-lee below in my comment…His work appears very doable although he knows of NO one in the USA that replicates his treatment approach in totality that he would recommend. That said, he utilizes microscopy and if there are WBC’s in the urine, his diagnosis is that the bladder is infected regardless of what a lab might say. (Sending a urine culture to the lab or Microgen could verify infection and specific microbes / drug resistance, but he does not do that as its an additional 200.00 fee, potentially inaccurate, and unnecessary from what I have read). His treatment is VERY cost effective and that may be because he functions in a socialized medical health care system vs a private enterprise like much of health care in the USA. Malone-lee uses fresh urine, looks at it under a microscope and if there is WBC’s, there is pus and an infection which demands treatment….(typical labs like Labcorp or Quest diagnostics that CULTURE urine samples have a value of microbes that must be reached in order to diagnose a positive or negative test result. Microgen does DNA analysis which is a very different method and will indicate infection without a certain amount of microbes to be found hence their 99.9 accuracy rate). Malone-lee says in his research that the symptoms which the patient is complaining about is the bodies natural inflammatory response to the bladder being infected hence….. treating the symptoms will never cure the #1 problem which is the bacterial-induced infection. He advocates and utilizes a long-term course of full dose, first generation, antibiotics that have been around for a very long time constituting their safety. A 39 point symptom analysis IE what the patient is saying about their symptoms is used to determine progression or not. (Another words, the patients symptoms dictate the course of treatment and not necessarily the labs diagnostics which is a tremendous medical advance that health care providers do not necessarily pay much attention to unfortunately). In addition, NO invasive procedures have proved a curative regime according to him but rather serve as symptom management at best when treating recurrent uti bacterial infections from what I’ve read. He is loaded with patients that have suffered like we have and has taken time to share his accumulated knowledge with some of us that have contacted him directly freely desperate for answers. Good luck to you…I am jealous as that is exactly where I would be going if I lived in Europe. Matter of fact, if I do not get what I need here, I may set up an appointment as he appears to be somewhat available and not booked for months out. Candice

  • Reply

    Evie

    May 30, 2018

    Thanks for sharing your journey! Did you also do instills with antibiotics and biofilm busters?

  • Reply

    KS

    May 31, 2018

    Hi Evie, using liquid antibiotics instilled in the bladder is recommended. I would have done it if the oral abx didn’t work. It makes you wonder why we haven’t always treated bladder infections that way. Its not that hard to be catheterized.

  • Reply

    Cary

    June 5, 2018

    Hi! I live in Seattle, but frequently travel to Portland. Can I ask who your naturopath was in Portland that worked with Ruth?

  • Reply

    Cary

    June 5, 2018

    Hi! I live in Seattle, but frequently go down to Portland. Can you please share the name of the naturopath you saw who got the protocol from Ruth Kriz?

  • Reply

    Michelle

    June 25, 2018

    I wanted to do the test for the DNA thru Microgendx I called them and they said due to the fact I live in New York they couldnt help me. due to some laws here. 🙁

  • Reply

    April

    July 24, 2018

    Hi Kimberly,
    Any chance you could share Amrit’s contact information?

    Thank you!

  • Reply

    Traci

    July 27, 2018

    This sounds like me! Three years of UTI symptoms. I’ve been diagnosed with IC. It went into remission during pregnancy. I get sporadic positive UA’s and cultures but I get a lot of negative ones too. I see my uro on Tuesday. I sure hope she’s willing to help me get the MicroGen kit. I’ve tried so many meds and even have the interstim. It’s seems more like the interstim surgery threw me into a flare. It was so disappointing.

  • Reply

    Candice SanPietro

    July 31, 2018

    Thank you Kimberly for your story! I have had recurrent UTI’s for 2 years and my 21 year old daughter for 3 years. She was diagnosed with IC 6 months ago. We contracted ecoli infections from a tub that was not chlorinated properly which has always been my assumption regarding the origin of our issues. Between the both of us, we have gone thru several surgeries, laser treatments, bladder stretching, multiple cystoscopies and a variety of antibiotics. 4 urologists later, I came upon information regarding Microgen DX labs in Houston and got a physician that uses them to sign the requisition form. Results in one week indicated that 87% of my infection consisted of ecoli and 13% was due to enterococcus faecalis. I had a HIGH bacterial load and a VERY suppressed immune system due to that load. I had been off antibiotics for months by the way. I took this information and compared it to the lab results of the typical culture I also had recently. Both validated each other. The Drug Resistance noted on the bacterial strains per Microgens part two component differed however so I called them directly for more information. (It makes no sense to be treated with an antibiotic that is not effective due to a resistant bacterial strain). I was able to chat with someone who explained to me that yes, the results are based on DNA analysis and the bacteria growing in my bladder all this time as well as their specific resistance was 99.9% accurate as it was tested on my specific urine sample and not a data base. Funny as that may sound, I needed to make sure of this because some of the resistance results upon comparison from both labs differed a tad in some of their details… though not much mind you. By the way, I am also familiar with Ruth Kriz and she uses the Microgen dx lab for her diagnostic results which was a confirmation however she is on a completely cash basis which is not accessible for my daughter who is a full time student. I understand many others use the Microgen DX lab however have found two of their urologists here in CO absolutely useless. In spite of the my 2 year history and the results indicating chronic infection, they wanted to treat me with yet another round of low dose antibiotic therapy for the following year. I tried that faithfully last year without any success so said no because that treatment made me worse! Low dose long term antibiotic therapy did nothing for me but make me wait an entire year for nothing while exacerbating my symptoms…urgency, frequency, burning, etc. I believe now that many of us that suffer with recurrent UTI’s are really suffering with a bladder infection im-bedded deep into the bladder lining. The SYMPTOMS of that condition based on bacterial infections, generate the urgency, burning, dribbling, constant sensations of having to pee, pain, radiating pain no less, IC traits etc. AND>>>low dose long term antibiotic therapy may be absolutely worthless along with the myriad of medical-based procedures that are suggested as potential cures mentioned above. this was my experience as well as my kids. I am currently looking at the work of Dr. Malone-lee out of London and his research on recurrent UTI’s seems VERY promising. He has treated many women successfully with well documented research studies that has been compiled since 2004. At this point, he is the only MD second to Ruth, an NP, that I know of that helps with long term recurrent UTI infections that have not been successfully treated utilizing natural therapeutic modalities. Another physician, Dr Hseih, MD / urologist out of Washington DC, is a potential referral as he takes most insurances and uses Microgen DX labs also….Moving through his call center and staff in order to see him however deterred me as it was a terrible experience that took me hours. Flying to his office for an appointment when I was not able to get much information from his staff as to what the 20 minute appt time would entail was another deal breaker for me.

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