Antibiotic Resistance Didn’t Stop My UTI Recovery

My history of various conditions led to recurrent urinary tract infections (UTIs) and the eventual colonization of my bladder with an antibiotic-resistant strain of bacteria. 

I’m now retired and live on my own in a cooperative in New York, but at the start of this journey, my loving husband was by my side. It’s been almost three years since he passed away.

When I was 45 years old, structural problems following a hysterectomy led to many bladder surgeries. These, I believe, caused chronic bladder infections with resistant bacteria. 

After the hysterectomy, over time, my pelvic structures were unsupported, resulting in prolapse, including cystocele and rectocele. The six surgeries that followed led to more UTIs and antibiotic use. 

For anyone who hasn’t experienced an acute UTI, it is quite painful indeed. The burning of my urethra was so intense at times that I was unable to function. My quality of life was terrible. Working and taking care of the household took all my resolve, but each time I was treated with antibiotics, the pain subsided… until the next episode.

One day in 2016, I woke up with a high fever, weakness, and aching. The physician assistant covering for my internist took blood work and ordered imaging, but he misdiagnosed me with the flu, as no definitive abnormalities were found. Still, my back and body ached, and I worsened each day. 

At one point, I became delirious, and my husband rushed me to the emergency room, where I was immediately diagnosed with a kidney infection and sepsis. It was very frightening when my arms shook uncontrollably and I couldn’t talk. My wonderful husband stayed by my side and was my greatest comfort.

Beginning of Treatment

Over the week in the hospital, I slowly felt better. When the doctor came on the fifth day, he delivered a bombshell: a urine culture showed I had a resistant strain of extended-spectrum beta-lactamase-producing E. coli, or ESBL for short. Most antibiotics would be ineffective against this bacterium. I had read about the dangers of antibiotic resistance, but never felt it could be something I’d have to face. A peripherally inserted central catheter (PICC) line was placed so my husband could continue to deliver Meropenem at home for 14 days.

I felt so shaken and vulnerable. But I felt I had dodged a bullet; after all, I was saved from sepsis and kidney infection. Now, Meropenem would completely heal me, or so I thought. My husband gave me the best of care, and soon, I returned to work and enjoyed life once again. The nightmare was all behind me.

My ESBL E. coli Remained

I had a follow-up with my urologist. He told me the urine culture showed ESBL present in high numbers! Shaken, I told him I was ready for Meropenem again, maybe for a longer period. He explained that this would not clear me of the bacteria. I had colonization of these pathogens, and it would likely be a chronic condition. The antibiotics would not effectively reach the colonized bacteria, as some were in my bladder cells, and others were protected by biofilm. These persister bacteria don’t ingest many nutrients as they are quiescent–in a state of hibernation. The antibiotic would not eradicate them.

He further explained that the levels of free-floating bacteria in my bladder may at times increase, so I was very susceptible to acute infections and must be on guard. I was to return immediately if chronic symptoms worsened, to be evaluated and treated for an acute infection. I had 100,000 colony-forming units (CFU) at the time, but my leukocytes were not high, and I was asymptomatic. Once I felt symptoms, I was to contact him for antibiotic treatment so as not to risk another kidney infection. Proanthocyanidins (PACs) and d-mannose were recommended, as well as steady hydration. I was referred to an infectious disease specialist.

Vaginal dysbiosis from early menopause, bladder stones, cystocele and incomplete emptying, surgeries and catheters, stones promoting bacterial growth, bladder wall erosion, and extensive antibiotic use–these are the conditions I believe led to my extensive colonization with ESBL E. coli.

Starting a Support Group

During the months following this visit, I had acute UTIs, for which I was treated. My chronic symptoms were burning, aching, and cloudy urine. Steady hydration and supplements helped me manage these symptoms and prevent acute infection. In spring 2017, carbapenem-resistant E. coli, or CRE E. Coli, was identified in a urine culture. My usual strain had mutated, and at that point, not even carbapenems would be effective. The CDC lists CRE E. Coli as one of the three most dangerous pathogens. Since I was feeling symptoms for many days and having acute infections start up, I felt it was only a matter of time before I’d lose this battle. My infectious disease doctor told me that the best way to manage my condition was to prevent acute flare-ups that required antibiotics. Should I have acute infections or have it spread to my kidney, it would be very difficult to treat me.

Although many of my friends had experienced UTIs, no one was familiar with antibiotic-resistant infections and bacteria persisting in the bladder. I joined UTI support groups, as I wanted to meet others in my situation. I found little about colonization and nothing about ESBL. I started a Facebook group called “ESBL and Resistant UTIs–Alternatives to Long Term Antibiotics.”

Two Different UTI Treatment Paths

Finally, I met someone who had ESBL E. coli, and we shared notes. He was advised to complete a course of Meropenem, then use Hiprex and some good probiotics for an entire year. I later learned this path led to his cure. I regret not following this protocol then, but at the time, I was worried about the antiseptic Hiprex, as it causes a small amount of formaldehyde to form in the urine. With my damaged bladder tissue, I felt it could be a cancer risk.

I became friends with a second person with ESBL, and she took an ambitious path. This included supplements, fulguration, phage therapy, and ongoing IV antibiotic regimens. Over time, she didn’t improve, and ongoing carbapenems helped manage her symptoms. Sadly, she was having more infections and more treatments, and she worsened. The man on Hiprex had continued to improve and had healed. 

These few outcomes are ultimately just anecdotal. But the man who improved over time did heal, and this was the same path my doctors recommended for me. The other patient I met had taken the path my doctors warned about: exposure to more antibiotics, which may result in fewer antibiotic options, new resistant strains, or more virulent pathogens. The cases of these two different patients affected my decisions going forward.

My Carbapenem Resistance Was Resolved

After reading advice from my new UTI support group and Live UTI Free (the resource I found the most helpful at the time), I began taking d-mannose, turmeric, and several other supplements. Out of all my steps, drinking extra fluid and d-mannose seemed the most effective. Soon, I was slightly better and managed to have only burning and cloudy urine. Sometimes my symptoms would flare, but I was able to ward off acute UTIs with the above steps. 

At a doctor visit, my urine culture showed that the bacteria were no longer carbapenem-resistant. I no longer had CRE E. coli! My bacteria soon became susceptible to several groups of antibiotics. By taking steps to prevent acute UTIs, I was avoiding antibiotics and improving, and now I had hope. I was managing my condition.

An ultrasound diagnosed post-void residual urine, so for a time, I took Tamsulosin, which really emptied my bladder well. Two new conditions came up that I had to deal with: Meniere’s disease and a heart attack. I wanted to avoid medications, so I dropped the Tamsulosin, and since then, I have used a technique called double voiding. 

I’d like to point out that my cultures and urine tests over the 8 years up to this point regularly showed leukocytes, nitrites, and 100,000 CFU of ESBL E. coli. A genetic test my urologist secured revealed 98+% Extended-spectrum β-lactamase, or ESBL, E. coli, specifically of the TEM strain. ESBL is an enzyme produced by some types of E. coli that causes it to be highly resistant to antibiotics. TEM is a strain of ESBL. 

Taking Steps to Stay Well

I had an interest in phage therapy and investigated participation in a clinical trial in the nearby Bronx. My infectious disease doctor felt that phage therapy is a promising approach and may well succeed in eliminating this resistant ESBL, but he didn’t advise me to take part in the trial. He explained I have a condition that included a compromised bladder immune system, and a lack of beneficial bacteria in my bladder, vagina, and possibly gut. 

My bladder likely had a mix of pathogens – possibly CRE, E. coli, Klebsiella, Pseudomonas, or other rare and resistant pathogens in low numbers. Given that I didn’t have beneficial bacteria or a strong bladder immune system, eradicating one of these could result in another becoming dominant.  A microbiologist friend described it like Whack-a-Mole; we can eradicate a pathogen easily enough. But another could be there in its place, and it could become the new dominant strain, possibly making me more symptomatic.

I sought a third opinion from a chronic UTI specialist. He reviewed my fifteen years of medical records. He thoroughly questioned me about my bladder, other conditions, surgeries, health, lifestyle, and diet.

He agreed with my ID doctor that a new pathogen might emerge if I eradicated the ESBL E. coli with phage therapy, one possibly more difficult to treat or that could cause more chronic symptoms.

Hope for Chronic UTI

The recommendation was to continue with steps to better manage my chronic condition.

He advised a treatment plan to improve my microbiome, lessen inflammation, and lower pathogens. The steps that would eventually help me heal were: Estrogen cream vaginally, to promote increased beneficial bacteria and improve tissue health, increased fluid intake to reduce inflammation and eliminate pathogens, Hiprex twice daily to reduce pathogens, PACs to lower pathogens, and probiotics to increase healthy flora. His opinion was that the formaldehyde formed in the bladder when Hiprex is taken would not be at a level to cause harm, and I thought it was worth trying. 

I explained that I had tried many of these steps in the past, and they didn’t make much difference. He assured me that I would see improvement if I took all these steps simultaneously and daily.

I followed the treatment plan with the recommended probiotic, increased fluid intake, Hiprex twice daily, and Estradiol. I also added two over the counter regimens: vaginal probiotic suppositries with lactic acid, and forskolin supplements with the hope that could reach intracellular baterial communities.

My doctor was right! After taking all these steps simultaneously, within a few weeks, my urine was no longer odorous and was clear. The burning eased, and now, I no longer have any symptoms at all! I was truly overjoyed to receive my urine test results. They showed an eradication of my bacterial load and negative leukocytes, nitrites, and bacteria. 

It has now been four years, and I have been well, with no urinary tract infections or bladder symptoms. I have continued to test negative and remain symptom-free.

There is certainly hope for those with chronic UTIs. Live UTI Free is an excellent resource, as there is information to help learn about root causes for chronic infections and various approaches discussed.