Linsey’s Chronic UTI Story

Linsey’s Chronic UTI Story

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Linsey is a nurse living in the United States.  Her problems began at the age of 33 after developing a UTI that did not respond to three short-courses of antibiotics.  Given no alternative but to live with severe bladder and urethral pain, her search led to a practitioner in her country who was able to order advanced diagnostic tests and finally treat her infection.  During her healing she discovered she had other systemic infections, including Lyme disease.  Addressing these additional infections was key to her recovery.  Linsey has been symptom-free for the past two years, but says it is more important than ever to remain vigilant and take a holistic approach to her body and her health.  You can read more about Linsey here.

 

I developed a bladder infection at 33 that didn’t go away

Growing up, I lived a normal life. My only health problems were asthma and allergies. I never took many antibiotics or medications except inhalers for asthma. I went through college and became a nurse. I had two kids, one at age 26, and another at age 28. Both of my children were birthed naturally, with no complications.

My bladder problems started in May 2011. I was 33-years-old. It was a normal weekend, and I was away at our family cabin in the woods where there is little phone service and no running water. I felt I was developing a bladder infection and decided to wait until I got home to get it checked out. I knew my body well enough to know I had symptoms of a bladder infection. I’ve had a couple in my life before and knew what the routine might be. I called a doctor and was put on a broad-spectrum antibiotic for what we both assumed was a bladder infection.

After the three-day antibiotic treatment, I was still having pain. I decided the antibiotics must have been wrong and perhaps I needed a urinalysis. I went to a quick clinic and completed a urinalysis. It was negative, but I was put on a different antibiotic anyway. This one was for seven days. After completing these antibiotics, I was not better and felt I still had an infection. I called my doctor again and was prescribed a third, different antibiotic over the phone. The doctor told me if this one didn’t work, we could be looking at a bigger problem and they would not prescribe any more antibiotics.

This is when I started to fear for what I might have going on. I am a nurse and I have taken care of a handful of people with different types of bladder dysfunction. I was terrified for what could be. I had found information on the internet about Interstitial Cystitis (IC). I feared I could be facing the biggest problem of my life.

 

My  UTI tests continued to be negative and my life became a living hell

I was in hell. I was taking care of two little kids and I felt I was going out of my mind. I was panicked and filled with anxiety. I kept a detailed journal of my symptoms and pain levels. I kept track of how many times I had been to the doctor and what they suggested. When I would give urine specimens, I sometimes would see large chunks of white tissue floating around. I was desperate and even pointed this out to the doctor. They gave me no answers. I was sent home time after time, defeated—with no solutions and in an intense amount of pain. I had an appointment to see a urologist for suspected IC … in 6 months’ time. This was inhumane. People in immense pain, and nothing. No treatment. No answers. No relief. I was all alone. People don’t understand. Nobody understands. It was 24-hours of hell. All day, every day.

The pain I had was constant. It felt like there were hooks inside my bladder and razor blades in my urethra. Sometimes the pain would feel like someone with ice cold hands was constantly poking and putting pressure on my bladder. Sometimes it felt like I had a rock in my bladder. Sometimes my lady parts just ached. I had the chills, night sweats, some muscle pain and back pain. It is hard to describe the pain, but it was a living hell. Meanwhile, all my urine tests continued to be negative.

While I was waiting for the urologist appointment, I started research on the internet. I remember one day I typed in ‘Interstitial Cystitis Success’. There were a lot of different, conflicting, confusing treatments out there. I came upon a website that talked about some ladies who were successful in getting treatment from Dr Paul Fuggazotto. He offered a broth culture test with urine that was showing proof of bacteria in women with IC. This test allowed the urine to culture for longer than the normal 24-hour cultures used by clinical labs. I knew there had to be some sort of answer because I always felt I had an infection that standard tests couldn’t find.

The pain I had was constant. It felt like there were hooks inside my bladder and razor blades in my urethra. Sometimes the pain would feel like someone with ice cold hands was constantly poking and putting pressure on my bladder. Sometimes it felt like I had a rock in my bladder.

 

I discovered a practitioner who knew how to treat my condition

Being a nurse, I was aware things constantly change in the healthcare world. There are new discoveries every day and new treatments and recommendations all the time. However, I think IC is one of those illnesses that very few professionals study to find better treatments for people who suffer. There are so many other diseases that kill. IC doesn’t kill. It causes suffering, and it is rare, so it doesn’t get much attention in my opinion.

As I studied more of Dr Fuggazotto’s method and how I could get treatment, I found he had passed away years ago. But, one of his patients who worked for him became a practitioner and was treating patients with Dr Fuggazotto’s theories and methods. Her name is Ruth Kriz. I Googled her details and called her right away.

Before I made my first appointment, I spoke with Ruth over the phone to make sure her treatment was right for me. She was confident she could treat me. By the time I found her, I had been living for three months in hell. Ruth said I was lucky I found her so quickly and she discouraged my urologist appointment. I was thinking this was a crazy idea. I found a practitioner over the internet who could treat me. I don’t know her, I don’t know any of her patients, and I have never met her. This was terrifying to me. But, for some reason after talking with her, I felt I could trust her.

Before I tell the rest of my story, I want to say that Ruth’s treatment methods have evolved. Her treatment today is very different than it was in 2011. Why? Because she is a very smart woman.  She is constantly learning and seeking new treatments and better practices. She attends conferences and learns from other successful professionals—as any good practitioner should. She is not afraid to try new things that others have found successful. She has helped people get better in different ways from when she herself was treated by Dr Fuggazotto. She said she had discovered many of us have multiple infections in our bodies. Some of us have a systemic infection that sometimes can settle in the bladder and cause it to be raw. The bladder and urethra are very warm, comfortable places for bacteria of all kinds to settle in and grow. Infections like Lyme disease, Bartonella, Protozoa and Mycoplasma LOVE the bladder. They poke holes in our bladder, damaging it, creating a great place for bacteria to enter the urethra and settle in.

 

My problem involved more than just a chronic UTI

We are all different and my story will more than likely not be like anyone else’s story. I think Ruth realises this and treats accordingly.

My first step was to do a urine test. When I had my first appointment, she had me go immediately to the nearest Emergency Room for a urinalysis ordered by her. The lab told me it was negative after a three-day culture, and they forwarded the results to Ruth. Low levels of group B streptococcus were found. The lab reported this as a ‘contaminant’, but Ruth said it was definitely an infection. I was so excited! I just had an infection. I thought Ruth was going to order an antibiotic and I was going to be better. Ruth warned me to be cautiously optimistic, but I was sure I would be rid of this infection soon. She was right. I did not get better after seven days, nor after one month.

I decided to do more tests. Ruth suggested I could have an underlying infection that was damaging my bladder. I was surprised to find that I did. I tested positive for Protomyxzoa, Mycoplasma, HHV6, Epstein Bar Virus, Bartonella and Lyme disease. I had no idea I was this sick. My blood had a large amount of fibrinogen. I found out this is due to the massive amount of Protomyxzoa communities. They build biofilms in your blood and can attach anywhere—especially the bladder and soft tissues. Lyme disease is caused by spiral shaped spirochetes that bore into the bladder and soft tissues. My bladder was damaged. And I had layers and layers of biofilm infections of all different types of bacteria, protozoa and fungus. These all showed up in later tests as I went through treatment.

After I was diagnosed, I think I realised some of the symptoms I had were relatable—a torn meniscus in my knee (age 33) some joint pain (that I contributed to ageing), floaties in my eyes (Lyme-related, but again, contributed to ageing), tiredness, a tooth infection that wouldn’t go away and ringing in my ears. When I was little I was sick and couldn’t digest food properly. I was able to recover with a gluten-free diet. Doctors suspected at the time I had food allergies. I am guessing this might have been when I contracted Lyme disease and co-infections. There are many dog and Morning Star ticks where I live. There are not many deer ticks that are officially attributed to transmitting the Borrelia virus. However, new science confirms that many other ticks carry the Borrelia virus which is linked to Lyme disease. I never remember being bitten by a deer tick, but I have been bitten by dog ticks and sand flies (which carry Protomyxzoa that causes IC pain).

 

There were ups and downs along the way but I gradually improved

I can’t even begin to tell you the many different combinations of oral antibiotics, antiprotozoals, antifungals and biofilm busters I took. There are too many to list, and they really need to be prescribed by a knowledgeable doctor who knows how to treat them.

My first year of treatment was hell. Ruth told me to be patient. I knew my choices were to continue with this treatment or mask my symptoms with pain medications and live a life of suffering. Three months into treatment with oral medications, my symptoms were at an all-time high. My pain levels were a 10 out of 10. On many occasions I thought about giving up, but I felt I had no other viable option. I was second guessing myself. Was I doing the right thing? Was I damaging myself with these strong medications? I tried following the IC diet, reducing chemicals and exercising more. These things helped a bit, but I was still in pain.

I brought my test results to my primary physician and I was told by three other doctors that I was being taken advantage of. They thought the tests were bogus because they were not FDA approved. The FDA approval process in the US is difficult and expensive. Because IC is a disease of suffering and relatively rare, it doesn’t get much attention. This is the same with the other opportunistic infections that I found I had lying dormant. The bladder is a perfect place for pathogens to hide. I think we all have many layers of biofilm infections to tackle when we have IC. With these thoughts in mind, I continued with treatment.

I finally started to feel better six months into oral antibiotic, biofilm busters and antiprotozoal treatment.   But I still didn’t feel healed. Ruth told me it takes a couple of months for the bladder to heal after you have removed the infections in biofilms. Because I was feeling so much better, I dropped the antibiotics and continued with antiprotozoals, biofilm busters and natural antimicrobials.

I kept a daily diary of my symptoms. During my treatment I hadn’t really noticed any symptoms changing or improving. What I noticed was longer and longer between episodes of pain and symptoms. It was very gradual and there was not really a definite pattern or reason. I only noticed as I tallied up the days without pain. Before treatment, I never went a day without pain.   IC is the most frustrating disease, ever. A year into treatment, I felt I was healed. At last I was able to eat and do whatever I wanted.

 

The illness that had turned my life upside down is now a memory

Eventually, I started to feel some mild IC pain return, usually before my period. I contacted Ruth and she said mild IC pain before my period was unacceptable. I started treatment again, but this time it was different. In 2016, I decided to try antibiotic bladder instillations. When I tested my urine through PathoGenius (now MicroGenDX), where they test the DNA of any pathogens in your urine, they found layers and layers of infection. I started the antibiotic/biofilm buster cocktail instilled direct into my bladder. I did one round of treatment which involved instils twice a day for around two weeks. For my second urine test through PathoGenius, I took a catheter sample so I was sure there was no contamination. I still had a few layers of pathogens. Ruth told me they were pathogens she commonly sees at the bottom layers. I did one more round of instils and I have not had any pain since.

 

During my treatment I hadn’t really noticed any symptoms changing or improving. What I noticed was longer and longer between episodes of pain and symptoms. It was very gradual and there was not really a definite pattern or reason. I only noticed as I tallied up the days without pain. Before treatment, I never went a day without pain.

 

I have not had any real pain or symptoms in about two years. I really don’t like to put time limits on this, because I think people with IC always need to be aware of their health. There is always a chance you could relapse. I say this because I really believe in the Eastern Medicine theory that you must learn to live with all sorts of viruses and bugs. There needs to be a balance. Your body is always seeking a state of homeostasis. You can reach homeostasis if your body provides a good terrain for the good and bad bacteria to live together in harmony. Most of us have HHV6, Epstein Barr, Protomyxzoa (100 percent of dogs tested were positive, in fact), and Lyme disease. It is those of us who can’t find a balance (the bad bugs outweigh the good ones) who find ourselves in trouble. An imbalance can be caused by many things—trauma or an infection from the flu for example. For me, it was a bladder infection. Ruth says you must fight the big bad guys first, like the gang that is ruling the streets. Once you knock them out, you will have to battle the next guys that show up. You can only do this by proper testing, and everyone is different.

Today, I focus on self-care. I always use D-mannose after sex, probiotics and good cleansing practices to keep bugs out of my urinary tract. If I were to have a relapse of bladder symptoms, my choice would be to reach out to Ruth, do the DNA urine test, and repeat the antibiotic instils.

It’s important to say I have met a lot of people who have healed in many different ways. I hope those reading my story find the treatment that works for them.

 

My tips for you

Here are some websites that might be useful:

https://microgendx.com/

https://ruthkriz.com/

https://www.westcoastmint.com/

http://protomyxzoa.org/wp-content/uploads/2013/05/Protomyxzoa_rheumatica.pdf

Editor’s Note:   Linsey’s practitioner ordered DNA testing through the United States lab, MicroGen Dx (formerly PathoGenius Laboratory).  This lab accepts samples from patients under a US practitioner only.  International patients can access similar testing at the US research lab, RTL Genomics.  This form of testing is not cheap and further testing may be required throughout treatment, so please do your research to find out more about testing and freight costs. Patients have also reported it is important to work with an experienced practitioner who understands how to interpret the results and prescribe treatment accordingly.  There are a number of patients who have accessed DNA testing, but their local doctor has not understood how to interpret the results and prescribe a treatment, or they have simply refused the test results.   Please speak to a trusted practitioner before choosing this option. 

 

 

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Disclaimer:  Stories or case studies in relation to personal experiences with chronic urinary tract infection, and links to other websites, are included for convenience and information only and do not constitute a recommendation or endorsement by Chronic UTI Australia of materials in those stories or on those linked websites, or any associated entity, product or service. We have not screened, nor conducted background checks or other investigations in relation to those third parties or the information they supply for inclusion on this website.  You should seek assistance from a health care professional when interpreting the materials available on this website and applying them to your individual circumstances. If you have any concerns about your health, consult your general practitioner. This blog is subject to the Chronic UTI Australia website’s Terms of Use.

 

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2 Comments
  • Jen A
    Posted at 14:27h, 02 June

    great positive story and outcome, The links will be handy too for those wishing more accurate tests 🙂

  • Chronic UTI Australia
    Posted at 13:34h, 03 June

    Thanks Jen. Linsey’s story is full of great information and shows that there can sometimes be other factors at play. People should do their research when considering more advanced testing and work with an experienced practitioner. The problems others have come up against is testing and postage can be expensive (and treatment for chronic UTI often requires multiple tests); and for those who haven’t used a practitioner experienced with DNA testing, they have been unable to received adequate treatment (if any) based on the test results from overseas labs. For anyone considering this, please discuss with a trusted practitioner first and gain their support.

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