Elizabeth’s Chronic UTI Story

Elizabeth’s Chronic UTI Story

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Elizabeth was struck with gastroenteritis while holidaying in Hawaii. Within days she had also developed a urinary tract infection (UTI) and was treated with antibiotics.   She responded well to the treatment but several weeks later some mild urinary symptoms returned.  Although the subsequent test from the lab was positive for a UTI, she was not informed and did not receive the necessary follow-up treatment.  Her UTI symptoms continued to get worse and by now her urine tests were negative.  This is when she was told she had interstitial cystitis (IC).  Elizabeth could not get past the feeling that her UTI in Hawaii had never fully cleared. Although her doctors insisted she was wrong and there was no infection, she was determined to find the answers she needed to get better.  Read more about Elizabeth’s chronic UTI story here.

My Chronic UTI Story

My name is Elizabeth. I’m a Canadian based mother of three, full time employed.  In January 2021 I was diagnosed with interstitial cystitis (IC). By April I had become asymptomatic. By October I was cured of my ‘incurable’ condition.   I’m not going to be having any more children, but if I were to have my three again, I would name each and every one of them after Dr James Malone-Lee because of his lifelong dedication to chronic UTI research and helping the sufferers of this horrible condition.  This is my story…

 

August 2019

I’m in Hawaii on vacation. I have gastroenteritis and immediately I know that bacteria have got into places it shouldn’t have. It had swarmed my urethra and I know it’s highly probable that I will get a urinary tract infection (UTI). Sure enough, 12 hours later I have the prickly sensation of a UTI starting. I immediately go to a clinic and got a course of antibiotics.

This UTI is painful.  I don’t need to tell you how bad this pain is—peeing blood, up all night, pacing the floor. After a seven day course of antibiotics my symptoms settled down.  Two weeks later my symptoms flare up again, but this time moderately rather than horrifically. I go to my General Practitioner (GP). The urine test shows nitrate negative, leukocyte positive and a microscopic trace of blood.

The GP determines this is ‘inflammation’ rather than an unresolved UTI. A urine sample is sent to the lab for a culture and it comes back positive for Escherichia coli and Enterococcus.  However, my GP fails to inform me of the results or that I need to treat the recurrence.  And there, without my knowing at the time, we have the start of my chronic UTI.

 

August 2019 through to November 2020

I am experiencing weird sporadic symptoms of minor flares (bladder discomfort, no burning pain on peeing and no typical urgency or frequency) that then resolve. After the acute UTI in August 2019, I feel my bladder is not where it should be.  I get the feeling that I am on the verge of getting a UTI, only for the symptoms to die down but never completely go away.  And there is always a sense of bladder tenderness. A couple of times I get my urine tested but it is now always negative.

 

December 2020

My UTI symptoms have become constant and uncomfortable. I have bladder pressure and pain rather than urinary frequency or urgency. I am becoming very worried. Clearly, I have something wrong with me but the symptoms are a moderate version (7/10 on the pain scale) of the acute UTIs I have experienced in my lifetime (I’ve had seven UTIs since age 11).

I go to my GP again. He tests my urine and the dipstick showed nitrate negative and leukocyte positive. My GP is adamant it is due to ‘inflammation’ not infection.  He gives me anti-inflammatory medication.  This does nothing to resolve the pain. By now I am taking pain relief around the clock and watching the clock until I can take another dose. My urine culture comes back from the lab. It shows positive for bacteria but at a load too low to identify. My GP states unequivocally that I DO NOT have a UTI and that the bacteria detected is a result of ‘contamination’. I insist I could not have been more precise with ensuring the sample was not contaminated.  My GP says I must be wrong.

 

January 2021 (six weeks later)

My symptoms are still bad. I have disturbed sleep. I have a consultation with my GP who says this is looking like interstitial cystitis (IC). He refers me to a urologist. The next appointment is May 2021…four months away.  I am left in pain and with a horrible diagnosis.

 

After the acute UTI in August 2019, I feel my bladder is not where it should be. I get the feeling that I am on the verge of getting a UTI, only for the symptoms to die down but never completely go away.

 

February 2021

I have read a lot of material on IC. All of it is thoroughly depressing. I get hold of my medical records and make a shocking discovery! I find out about the recurrent UTI in August 2019 that my GP failed to tell me about. I realise that the original UTI was never fully treated, my GP screwed up. I suspect I’m dealing with an ongoing infection, not IC.

I bombard Google. A massive lightbulb moment occurs when I stumble across the work by Dr Malone-Lee in the United Kingdom.  This is my eureka, halleluiah, praise the Gods moment. Melissa at Live UTI Free is enormously helpful in providing me with information about the Artemis Clinic run by Dr Malone-Lee

I call my GP to break the great news. My GP bluntly tells me this is insane…it is “off the charts for insanity”. I argue that the urine test using a petri-dish isn’t sensitive enough to detect chronic bladder infections. He tells me that my symptoms are due to inflammation and the petri-dish urine tests are perfectly adequate. He says Dr Malone-Lee is a quack. I point out that Dr Malone-Lee’s credentials and academic standing are far more impressive than his.  On that happy note we ended the call, and him as my GP.

I contact Dr Malone-Lee’s clinic and they put me in touch with Dr Bundrick, a US-based urologist. Simultaneously I send my urine off to MicroGenDX for DNA testing*.

The results come back. The DNA test* has identified Escherichia coli  and Enterococcus, the same bacteria as my index infection back in August 2019.  I’m now positive this is not a new infection…this is the same infection from August 2019 that never fully resolved.  The report also helpfully maps the appropriate antibiotic therapy for these bacteria and shows no antibiotic resistance.

I met with Dr Bundrick. He is totally in agreement that I have an unresolved bacterial UTI and he confirms that the treatment plan is full-dose antibiotics for an extended period. The lab report indicates Nitrofurantoin is effective for the bacterial strains identified. I start with full dose Nitrofurantoin in February 2021.

 

March 2021

I met with a lovely doctor from Dr Malone-Lee’s London clinic. I wanted to talk about their treatment approach and just get an opinion from them. Dr Malone-Lee is a medical hero. I am full of admiration for the work of this beacon of courage and conviction in the medical world, where peers can be brutal towards those that show dissent from the common mantra. However, I don’t agree with the treatment plan. His clinic uses an antibiotic that is ineffective against the Enterococcus identified by my DNA test*. I read the reasoning behind why Dr Malone-Lee’s protocol favours particular antibiotics but still I cannot reconcile that with the contradictory evidence from my test result. So, with the greatest respect I defer to guidance from the DNA report, and Dr Bundrick, as to which antibiotic we use to treat my infection.

 

April 2021

Already I have no symptoms, no pain, no nothing. In the previous three months I had two flares of moderate discomfort and needed pain relief. Each flare lasted five to seven days.

 

October 2021

I am still taking antibiotics and they are starting to irritate my stomach. I stop taking them and wait ..and wait ..and nothing happens. My symptoms have not returned.  At the same time, I read a very interesting article on research into chronic UTIs. The research is looking at the use of “friendly bacteria” in conjunction with cranberry supplements. I start using the lactobacillus vaginal suppositories.

“In a new study, vaginal suppositories containing lactobacillus crispatus used two to three times a week over one year helped prevent attacks, reports the International Journal of Urology.

“The treatment not only stopped attacks during the 12 months but was also protective over the following year. Lactobacillus crispatus out-muscles bad bacteria and stops them taking hold, suggest the researchers.”

 

November 2021

Four weeks after stopping antibiotics I still have no symptoms. I send my urine off for DNA testing once more. The results are in—no sign of Enterococcus or Escherichia coli !!! However, it does detect lactobacillus crispatus. LOL.  Going forward, I am continuing the friendly bacteria supplements, plus cranberry supplements, plus Hiprex. I have no UTI symptoms anymore, whatsoever.

I would be more than happy to personally help anyone who wants to talk. I wish I’d had this insight during my dark days of first being diagnosed with IC, wondering how I would cope with the misery of constant pain.  Now 10 months on—it’s over!   I’m cured! Thank you to Dr Malone Lee and Dr Bundrick—I owe my quality of life to your genius.

 

My Chronic UTI Tips

  • I know how painful chronic UTI is and my heart goes out to you if you suffer from this. My advice would be to have your urine tested by a next-gen laboratory*. The days of relying on a UTI diagnosis from a petri dish should be over.  Once my bacteria were identified, it was important in my recovery to map that strain with an antibiotic that was effective.

 

  • Have patience—these infections are determined to hang on in there and it takes time to fully eradicate them.

 

  • Supplement with the friendly bacteria and cranberry supplements—it can’t hurt.

 

  • What about diet? I found no evidence to suggest that a particular diet would help in killing bacteria and I do not buy into the autoimmune argument—not when I can see results of actual bacteria in my urine. However, I think it helps to restore the friendly gut bacteria as much as you can. I have been taking pre- and probiotics, d-mannose, kombucha, kimchi, kefir and colourful berries and vegetables as much as possible.

 

*There is no evidence or consensus in the scientific community on the accuracy of DNA-based molecular testing to diagnose chronic UTI.  Some leading UTI researchers do not support the use of DNA-based molecular testing to direct treatment due to the current lack of understanding of the urinary microbiome and the inability to conclusively identify and describe the microbes responsible for health and disease.   We do accept that people improve under the care of practitioners who employ DNA testing to help guide treatment.   Therefore, it may be best used by experienced practitioners in conjunction with the patient’s history, symptoms and other tests.  As part of your own research into treatment options, please ask for evidence that a practitioner has experience and success using this approach and the cost involved in repeat testing.   In Australia, anecdotal reports so far show difficulties for people finding practitioners who understand the test results, and more importantly, have specialist knowledge in treating chronic UTI.  The repeat testing some treatment protocols require could be considered cost-prohibitive by many.  Although it is still early days, it is hoped that DNA-based  molecular testing will one day allow the identification of a personalised healthy urinary microbiome and inform future treatment options for UTI.  You can read more about UTI testing here.  To read our 2018 interview with US research scientist Evann Hilt from Loyola University,  please click here.  

 

 

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