Lindyloo’s Chronic UTI Story

Lindyloo’s Chronic UTI Story

Reading Time: 4 minutes

Lindyloo is a Dutch woman with a history of bladder problems spanning three decades.  She was treated for monthly UTIs, until short-course antibiotics no longer had an effect.  By now she was in constant pain.  Bedridden and in emotional turmoil day after day, she had the choice of giving in to her painful illness, or gather the energy to find a solution.  When Lindyloo took to the internet and learned of a UTI specialist in England, she knew she had to get to the clinic if there was any hope of improving her quality of life.  Lindyloo made the painful journey and her treatment has been life changing.  Read more about her story to find out why.

 

I developed monthly UTIs

I am a 55 year old Dutch bladder infection survivor! Nearly three years ago I was in such terrible pain, my life was not worth living anymore.

I have had bladder problems for 32 years. In my early twenties I had a cystoscopy with hydrodistention that indicated bladder lining damage and was advised not to drink coffee. This was one of the worst operations of my life that I would never repeat as it made matters worse not better!

My frequency continued and I developed UTIs, infrequently at first. Then as I got older they came more frequently, until  the last years I had UTIs every month!! I always responded to antibiotics. However, with antibiotics this frequent, one by one antibiotics had become less effective. I was suffering from nasty antibiotic side effects.  I would be getting better for a few weeks, then needing more.

My life was already dominated by my bladder. I couldn’t travel anywhere without knowing where a toilet could be reached every half hour. Then passing urine could be difficult and the stream became weaker. So I stopped traveling by plane and curtailed other forms of transport, always worried a painful infection could develop at any moment.

My frequency continued and I developed UTIs, infrequently at first. Then as I got older they came more frequently, until the last years I had UTIs every month!!

 

I finally had an infection so terrible no antibiotic would help for more than a day! I became totally bedridden.   This was in September 2014 and I’d had so many miserable years of never being able to do anything without considering my bladder.  In daily tears, I began researching for help!

 

I traveled abroad to see a UTI specialist

My husband helped me make the terribly painful journey to a bladder clinic in London run by a wonderful Professor. My doctor had issued me with the best antibiotics he could, plus a catheter. It was agony, you have no idea.

After visiting Professor Malone-Lee at his clinic I improved from the start, but I realised I would need long-term antibiotic treatment.  I had finally met a clinician that understood my illness and explained both why I was so ill and how the bladder would be made better. I was shown diagrams and everything was explained in great detail.

My husband helped me make the terribly painful journey to a bladder clinic in London run by a wonderful Professor.

 

After taking my history and discussing my symptoms, I felt understood.  And for the first time in decades, I felt in competent and compassionate hands. The relief was enormous! I was given lots of paperwork to re-read what had just been explained to me and to share with my GP. My questions were answered patiently and the rest of the staff were friendly and open. My treatment was explained along with possible complications to watch out for.  I was told to contact the Professor immediately any difficulties developed or if I had the slightest query.

 

After a rocky start, I started to see progress

Indeed I had some difficulties during treatment and my emails were always answered very promptly, even on occasions at weekends. I have had telephone contact and felt more cared for and safer than at any time in my life while undergoing medical treatment.  Sometimes my concerns have been greeted with an informed response within minutes! Amazing dedication.

 

I introduced a raw fruit and vegetable diet and…finally…I was cured!

Further into my treatment, I felt it might be beneficial to change my diet to include tons of fruit and vegetables. For some months I just ate raw fruit and leaves.

It is my belief that the powerful antibiotics, over an extended period, cleared some long-standing, deep infection in my bladder. Then the diet encouraged much more healthy bacteria to move into the space. My GP says there are papers proving our microbiome can be changed by the food we eat, and the Professor’s papers prove that no urine is sterile!

I have been healthy and antibiotic free for a year now. My new life is one where I forget my bladder. No one should suffer the way I did for so long. There is new science on this and hope. These services for chronic UTI should be made available in every country.

 

Update:  January 2019

Lindyloo has been UTI-free, pain-free and antibiotic-free for over two and a half years.  She is convinced improving her diet part way into her treatment helped her recovery.  She now feels in control and lives without any concerns about UTIs or bladder pain.  She can eat and drink whatever she likes and travel wherever and whenever she pleases.  She is thrilled with her new life! 

I can eat anything, like fruit, coffee, spicy foods, meat, fish, fizzy drinks, sweets and chocolate. I have no pain at all!

 

 

CLICK HERE to subscribe to our blog

 

 

CLICK HERE to visit our FAQ page

 

– Return To More Blog Stories –

 

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.

 

– Return To More Blog Stories –

 

Sharing is caring!

8 Comments
  • Mrs Maggie S
    Posted at 21:57h, 29 July

    Hello Lindyloo, read your history with great interest. so pleased to hear you are so much better now. I,ve had tCystitis for 50 years., then 3 years ago developed UTI, my Doc was no help at all. after 2 and half years was suggested (by a friend) to go and see Professor Malone-Lee. as you said he knew immediately what was wrong. Am on antibiotics and Hippurate, sometime much better then its back again. Am interested in your diet. This is my next question to the Prof. when I see him a couple of weeks time. does diet make a difference. have read some ladies saying not to eat any berries, toms. etc. you are saying the opposite. Great to know that there are other people with this condition. health and happiness to you Maggie

  • Chronic UTI Australia
    Posted at 09:23h, 02 August

    Dear Maggie, thank you for your interest in Lindyloo’s story and for your comment. Lindyloo altered her diet quite late into treatment and focused on eating only ‘raw foods’ for a time. At this stage she was able to come off antibiotics, and stay off, while supporting herself by eating raw. When she was confident in feeling well, she gradually introduced normal foods back into her diet and she stayed well (and still is!). She believes her chronic bladder infection was cured through the combination of long-term antibiotics that wore down her embedded infection, along with the introduction of raw foods that she and her GP believe restored a healthy microbiome. You can look up raw diets online and there are also raw foods support groups around. It’s a good idea to talk to as many people as you can to compare what was successful for them. Everyone is different, so doing your own research is important. Good luck with your continued treatment under the Professor. Please feel welcome to come back and visit or give an update with your progress.
    P.S. You might also be interested in Melissa’s story: https://www.chronicutiaustralia.org.au/melissas-chronic-uti-story/

  • Alicia P
    Posted at 03:38h, 29 September

    Hello, as i was reading I understood that the problem itself was antimicrobials inbedded in her bladder walls, and that hteres no existant test known as to prove this, so the best choice is to give a frist generation run of antibiotics. Its great she feels better!

  • Chronic UTI Australia
    Posted at 22:33h, 01 October

    Hello Alicia, thanks for commenting on Lindyloo’s story. You’re right, the bacteria become embedded in the bladder wall. They do this by either entering the cells (intracellular infection), or by sticking onto the surface of the cells and covering themselves with a protective biofilm layer (biofilm infection), or a combination of both. There’s more detailed information you might find interesting on this link: How Chronic UTI Forms Lindyloo’s specialist has managed thousands of patients with chronic UTIs over the years. He diagnoses and monitors treatment by paying close attention to the patient’s symptoms (as well as groups of symptoms), their physical signs and also checking levels of white blood cells (pus cells) and epithelial cells in an immediately fresh, unspun, unstained urine sample. He has found this to be the best and most reliable method currently available for treating these patients. It’s important to understand that short courses of antibiotics are not effective in such cases. As you can see with Lindyloo, she is now happy and well once again.

  • Tiffany
    Posted at 19:35h, 19 January

    Hi, is Professor Malone Lee still practicing? Just wondering if there is anyone in Australia that can help or if he is still practicing then perhaps he can help. Thanks, Tiffany

  • Chronic UTI Australia
    Posted at 21:46h, 19 January

    Hi Tiffany, yes he is. He heads a chronic UTI clinic in London and sees many patients. It’s the only chronic UTI clinic in the world that we know of. Check your emails as we’ve sent you information on how you can find out more.

  • Nadia B
    Posted at 08:04h, 12 July

    I am very susceptible to urinary tract infections. I used to be on daily antibiotics as a preventative, but after a couple years those really started to do a number on my whole body.

    On the very infrequent occasion where I feel like a UTI is coming on, I immediately take a double dose (4 pills) of the XXXX Cranberry Concentrate, and that knocks it out pronto.

    The vast majority of the time, the XXXX Cranberry Concentrate is very effective at preventing the UTIs from happening to begin with!

  • Chronic UTI Australia
    Posted at 20:39h, 15 July

    Hi Nadia, thanks for your comments on Lindyloo’s story. It’s great you’ve found something that works for you. Our shared patient experience hasn’t shown as much success using cranberry to manage or prevent symptoms. There are many women who find d-mannose can be helpful, however research shows it works best for UTI symptoms caused by an E.coli infection. I hope you continue to get good results with what you’re using.

Post A Comment