Lauren’s Chronic UTI Update

Lauren’s Chronic UTI Update

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Lauren first shared her story with us in May 2018.  She had been misdiagnosed with interstitial cystitis when an acute UTI did not resolve and she was prescribed a series of medicated bladder instils by her Australian urologist.  Although this treatment helped take the edge of her symptoms, she sought a second opinion from a UTI specialist in the United Kingdom.  She was diagnosed with a chronic UTI and immediately started on a scientifically validated antibiotic treatment protocol.  After 22 months of continuous treatment, she has fully recovered and celebrates 18 months’ symptom and medication free!  Read Lauren’s updated story.

 

Updated November 2020

Well, you last heard from me in May 2018… I was nearly 11 months into treatment and feeling great! I was expecting to start coming off antibiotics at my next appointment in early August.

So… after an amazing few days on holiday in Berlin (another thing I couldn’t have imagined doing only months before), I flew back into London to see Professor Malone-Lee, still feeling great. My appointment went well, Prof was his charming self, as we laughed and chatted about my trip and he counted my sample. He looked up from the microscope and said, “Are you sure you’re feeling OK? I think you might have a flare on the way.” Both my white blood cell and epithelial cell counts were higher than they’d ever been. But I was feeling fine, so I shrugged it off as ‘one of those things’, left Harley Street and carried on my merry way back home to Edinburgh.

 

Struck by a horrendous flare at the 11th hour

Exactly two weeks later, I woke up to a horrendous flare, acute UTI symptoms—shakes, flushes, pain, burning, passing tiny amounts of urine and not being able to be more than a foot away from the loo—you know the drill. But, in between the agony, I actually remember thinking “that man is a genius…” 🙂

Anyway, as I felt so horrible, I called my GP and dropped in a sample, which actually cultured (you’ll know that chronic UTI sufferers’ samples often don’t show any growth despite horrible symptoms). My GP prescribed me a week of a different antibiotic than I was on through Prof, believing I had managed to pick up a new, additional infection (in fact, Prof explained to me that it was likely that bacteria had broken out and/or a different bug had become dominant in my bladder, rather than a ‘new’ infection).

After contacting Prof to ask about the supplementary antibiotic, he advised me to go ahead and take both together, which I did, and had an immediate reduction in symptoms. A month after my August appointment, and two weeks since the onset of the flare, a quick ‘pee and flee’ dash to London confirmed that taking both antibiotics together had reduced not only my symptoms, but my counts too, considerably. So, I stayed on that regime for another eight months.

Over that time, I only got better and better, I was once again completely symptom free and my next two visits to the Harley Street clinic showed my lowest ever cell counts. I even reached the holy grail of double zeros at one appointment.

 

I was ready to reduce my medication 

In March 2019, and now seeing Professor Malone-Lee’s son, Dr Matthew Malone-Lee, I was advised that I could start to reduce my antibiotics; first by reducing and then dropping one type, and then the other. I had just started a new job at that time, so I decided to settle into my new role before upsetting the apple cart, so to speak.

I need not have worried, a month later in April I dropped one antibiotic, and in May 2019 I came off antibiotics altogether. I continued taking Hiprex, at first twice a day, and then once, for a few months as a safeguard and to give me peace of mind. But eventually, when I realised I felt so well that I’d forgotten to take it for days on end, I gave that up too.

 

I am 18 months off all medications and I’m completely well 

I have now been off antibiotics for 18 months and have had no infections, no flares and no symptoms whatsoever. I have continued to be monitored by Dr Matthew Malone-Lee (although due to the Covid-19 pandemic I haven’t seen him now in almost a year). I have scheduled what I expect to be my final appointment at Harley Street for March 2021, where I will be almost two years off medication.

It’s difficult to remember now those dark old days. Re-reading my story in order to write this update brought back a lot of anxiety and that old pit-in-my-stomach feeling. But it also gave me a valuable reminder of how far I’ve come, how thankful I am for my health and for those ‘diamond in the rough’ doctors who swim against the tide, treat based on the patient and their symptoms (not the test result), and who truly understand and have genuine empathy for those of us who desperately seek their help to get our lives back. I just wish there were more of them.

I know this illness is a rough ride. It’s easy to give up hope and feel helpless when it seems like even the medical world is against you. But I’m living proof that even though it’s a rocky and precarious road, you can heal and get your life back. My advice is to research like crazy, really try to understand your body, what it is going through and why, look after yourself (like, really look after yourself—self-care is EVERYTHING), never stop looking for one of those rare doctors who ‘gets it’ (or even if they don’t, they are willing to learn), and never, ever give up hope!

Read Lauren’s original story here

 

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7 Comments
  • elizabeth m
    Posted at 13:47h, 18 February

    I’m so pleased for you !! you have given me hope. I had an acute UTI in July 2019. I had a 7 day course of nitro and it seemed to resolve. 2 weeks later I became symptomatic again ..I went to a walkin clinic and the Dr said the dipstick test was nitrate negative although leukocyte positive and he said it was probably just post UTI inflammation. He sent my urine off for testing and then failed to tell me that it came back positive for ecoli and enterococcus, so the recurrence was left to fester untreated. Eventually the symptoms subsided and I had a few UTI-like twinges which I thought were odd as I knew there was no possibility of an acute UTI.. in December 2020 however symptoms really flared and my GP tested my urine. Again Leukocyte positive nitrate negative and the culture showed positive for bacteria but a too low levels to get a culture. My GP said just inflammation. I said hell no its embedded UTI . I did a MicroGen test and there were the 2 bacteria again.. they had never left. iI managed to get on antibiotics and so far I have very mild symptoms but its by no means gone – been 6 weeks now.
    I met with Dr Bundrick a week ago and I’m waiting for my antibiotic prescription. He recommends 2nd line antibiotic and says Hiprex will do nothing until the bacteria has gone ..contradicts Dr Malone Lee ..I might just take Hiprex anyway, but I would really like to know the argument for 2nd v 1st line antibiotics for this.

  • elizabeth m
    Posted at 08:49h, 16 March

    Just a post note .. I started taking ampicillin /Clav January 5th. I now have almost zero symptoms. Nothing other than if I press on my bladder it feels slightly uncomfortable but that’s it. I have had no symptoms now for about 2 weeks and before that quite mild discomfort that I took pain relief for .. but I’m not taking anything now other than antibiotics. I’m seeing Dr Malone-Lee in May and my Canadian urologist in June and plan to write a blog then.

  • Chronic UTI Australia
    Posted at 18:21h, 21 March

    Thanks for sharing your progress Elizabeth. This is wonderful to hear. Please keep us posted!

  • elizabeth m
    Posted at 06:05h, 27 April

    I’m pretty much still asymptomatic now for close to 3 months. I met with the Malone-lee clinic , very nice Dr but he recommended a switch to clarithromycin ..and while I agree that this narrow spectrum drug is less likely to run into c-dif issues, I can’t bring myself to take it as it’s useless against enterococcus, which is what showed upon the original infection and showed again on MicrogenDX test. Additionally the clavulin I’m on is pretty effective .I have almost no symptoms just the odd twinge here and there. What I am very excited about though is the discovery last year of how bacteria can evade antibiotic treatment in UTIs by shedding the cell wall, and becoming undetectable -to then regrow the cell wall and start causing symptoms, once antibiotics have worn off. This L-Form bacteria is treatable by combining a mix of antibiotics that attacks the cell wall and another that attacks the cell membrane. My next step is to add another antibiotic to my current regime. I’m meeting with Dr Bundrick to discuss Wish me luck 🙂

  • Chronic UTI Australia
    Posted at 07:58h, 03 May

    Hi Elizabeth, you’re having great progress with your treatment. This is great to hear. We hope your current approach continues to keep you symptom free and gets you across the finish line. Good luck!

  • Rebecca D
    Posted at 22:04h, 10 June

    Hi does anyone know if I can contact Dr Malone directly (I live in Aust) or is it something I need to do through my go?

  • Chronic UTI Australia
    Posted at 17:24h, 17 June

    Hi Rebecca, if you go to our FAQ section, you’ll find more information under ‘How Does Professor Malone-Lee Diagnose Chronic UTI’: https://www.chronicutiaustralia.org.au/faqs/

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