Julie’s Chronic UTI Story

Julie’s Chronic UTI Story

Reading Time: 10 minutes

Julie is an Australian woman whose first ever UTI did not fully respond to treatment and turned into a misdiagnosis of interstitial cystitis (IC).   Feeling she still had the infection, and becoming increasingly depressed that her UTI tests kept coming back negative despite her ongoing UTI symptoms, she decided to take matters into her own hands.  Julie began researching and came across a molecular DNA-based UTI test that identified the bacteria that her local MSU cultures were unable to find.  With further research, she decided to tackle her infection through a combination of natural anti-microbials, a nutrient dense plant-based diet, fasting and lifestyle changes.  Within a year, her self-prescribed regimen gradually strengthen her whole body and, in turn, healed her chronic UTI.  This is her story.

 

After my first ever UTI didn’t fully respond to treatment, I was told I had interstitial cystitis (IC)

I was 55 when I was told I had interstitial cystitis (IC).  It started with getting my first urinary tract infection (UTI) with a new partner and finding that it didn’t clear up after a round of antibiotics prescribed by the local GP.  It was a rather nasty shock as I had always been fit and healthy and suffered very little in the way of health problems.  My only times of being in hospital had been for a wisdom tooth and to treat a case of Bilharzia after travelling through Africa in my youth.

Prior to the UTI I had been having a few menopausal hot flushes and had a few problems with some lower back pain.  I had also lost two loved ones in the prior year and I think the emotional stress contributed to the problem.

The UTI symptoms continued to get worse and I was getting urethral burning and frequency.  Another round of antibiotics and natural hormone replacement therapy (HRT) was prescribed by the doctor, which I was very reluctant to take as I had barely taken a Panadol in the last 35 years.  I was very aware of the downside of antibiotic drugs and what they did to the gut.  My health went from bad to worse, which was probably exacerbated by the fact I was so stressed by the ambiguity of the problem and not being able to find some proper help.  Eventually I was sent to a urologist who suggested a cystoscopy and a bladder distention.

 

I cancelled further invasive procedures and started my own research

When I asked what this would do for me, she said that the bladder distention MAY temporarily reduce a little of the frequency and the cystoscopy would prove that I had IC.  I cancelled the procedure and started researching.  Upon finding the Inspire website I was able to chat with many of the girls who had had the distention and it came to light that this procedure had been cancelled in certain parts of the USA as urologists were now thinking it could actually adversely affect the symptoms.  I also came across a thread on the same site where girls who were testing negative for infection using standard lab testing (which is what had happened to me on three different occasions) were testing positive through second level testing at a molecular laboratory in Texas, USA.  They were all posting their results showing various bacteria from Enterococcus to Escherichia coli.  So I sent my urine away to be tested and I wasn’t surprised to find that I had a positive result for Staphylococcus aureus as well as high levels of E.coli.  I had meanwhile told my urologist what I was doing and she responded that unfortunately she wouldn’t be able to treat me based on any of the results from a foreign lab.

Trying to work was a nightmare. I have my own business as a sales agent which means travelling to various parts of South East Queensland to see customers. I was only able to sleep two hours at a time at night before having to get up and was still experiencing excruciating urethral burning half an hour after voiding.

 

Not knowing where to turn, it was back to the research and I thought that maybe a green diet with loads of antimicrobials and high amounts of D-Mannose would do the trick.  D-Mannose, for those of you who haven’t used it, is a sugar that the E.coli attaches to—it can be taken long term and in high quantities as a supplement.   I was already eating a very restricted diet as anything that was in the slightest way acidic would make the symptoms even worse.  I was living on kale, lettuce, cucumber and apple smoothies with maybe some oats and coconut milk for breakfast, a very bland and green salad for lunch with olive oil and steamed veggies for dinner.  I was adding, where I could, loads of chopped fresh herbs and garlic, turmeric and any other anti-microbials.  Drinks were ginger and mint teas.  I went from 55 kilos to 50 kilos and all my friends were extremely envious!!!

Trying to work was a nightmare.  I have my own business as a sales agent which means travelling to various parts of South East Queensland to see customers.  I was only able to sleep two hours at a time at night before having to get up and was still experiencing excruciating urethral burning half an hour after voiding.  This got worse as the day progressed.  Looking back I still don’t quite know how I managed to function.  I certainly knew where every toilet was in the territory.

 

My treatment protocol consisted of diet, yoga and natural antimicrobials

Besides the diet, which certainly reduced the urethral burning, I also looked at the physical aspect of what I was doing.  I increased my yoga sessions to twice a week and did more stretches at home which was helping my back.  I also walked an hour every morning along the Esplanade, occasionally trying a bit of a run on the soft grass when my back wasn’t too bad.  I couldn’t meditate at this stage as I was just so uncomfortable with the bladder pressure, so I tried various visualisations instead. I used several which all incorporated visualising the bacteria being eliminated from my body.  All this was very new to me and took a while to master.  I remember feeling very depressed at the time, which was very unusual as I am normally a ‘glass half full’ type of person.  I read later that depression is linked to the inflammation in your body, so it made perfect sense to be feeling this way.

During this time I was still researching and messaging various people from different websites who had similar symptoms to myself.  It was thanks to this that I met a girl who put me onto a book by Stephen Buhner called Natural Antibiotics.  She had been using them herself, having tested positive at the Pathogenius lab (now MicroGen Dx) for Ureaplasma and high E.coli.  Using Serrapeptase as a synergist, she had been taking it for a number of months and her painful symptoms had subsided, although she was still getting some pelvic pain.  This too was diminishing after seeing a physical therapist.

During this time I was still researching and messaging various people from different websites who had similar symptoms to myself. It was thanks to this that I met a girl who put me onto a book by Stephen Buhner called Natural Antibiotics. She had been using them herself, having tested positive at the Pathogenius lab for Ureaplasma and high E.coli.

 

I had a friend in Ghana (West Africa), which is one of the main countries that grows cryptolepsis (one of the natural antibiotics that is recommended for gram negative bacteria such as E.coli). The friend brought some back to Australia for me.  I since found out it is available from Woodland Essences in the USA and there is also a distributor in England.  I was making a type of tea with the cryptolepsis as it didn’t exactly come with a suggested dosage.  By now I was getting used to self-experimenting as I couldn’t find any experienced help here in Australia from the medical profession.  I took the cryptolepsis alongside other herbs, as I had been researching Ayurvedic herbs to use as a synergist.

There is a significant difference with natural antibiotics to synthetic ones according to the Foreward of the Herbal Antibiotics book:

“…when we borrow the antibiotic compounds from plants, we do better to borrow them all, not just the single solitary most powerful among them.  We lose the synergy when we take out the solitary compound.  But most important, we facilitate the enemy, the germ, in its ability to outwit the monochemical medicine.  The polychemical synergistic mix, concentrating the powers already evolved in medicinal plants, may be our best hope for confronting drug-resistant bacteria.”

Although this didn’t eradicate my symptoms, it certainly alleviated them.  I was now able to get up to 4 hours of sleep at night and the pain on voiding was down to once or twice a day.  It had taken over 8 months to get to this stage.

 

I learnt about the health benefits of fasting and this was my turning point

The next thing though really made the difference.  I had been doing a lot of reading and researching as this illness had meant many days that I had spent a great deal of time lying on the couch.  It started with a very old book written by Dr Shelton of the success he had had fasting patients to get rid of their chronic illnesses.  I then read many other texts and books on the subject.

One of the problems with IC seems to be that the bacteria get embedded in the bladder lining.  The bladder is an organ that is very difficult to treat with antibiotics, especially as any medicaments are usually filtered through the liver and kidneys first.  The problems with this are twofold—in that the antibiotics have rather nasty side effects on our gut health, and secondly, it can often cause mutation or resistance of the bacteria currently in the bladder.

I discovered that one of the ways fasting works is that the body autophages the bad bacterial cells and parasites, even recycling the minerals and vitamins in those same bad cells.  This answered my question about getting the required amount of nutrients for a longer term fast.  I was hoping this would work in reaching the bladder area.

I knew I wouldn’t be successful at doing this if I tried to incorporate it with my normal life.  It was coming up to Christmas and some friends had asked me to cat and house-sit, so a change in routine and scenery seemed the perfect time.  I started the day before by just having green juices and after that it was plain filtered water and the odd cup of mint tea.  I didn’t get any of the headaches or flu-like symptoms that are often reported in the first days of fasting, but I did feel very down and depressed.  I wasn’t even that hungry;  it really felt more like boredom because it made me realise how much of our lives we spend shopping and preparing food.  I tried to meditate and do visualisation, also lots of yoga stretches, though this got less the second week when I had very little energy.

One of the problems with IC seems to be that the bacteria get embedded in the bladder lining. The bladder is an organ that is very difficult to treat with antibiotics, especially as any medicaments are usually filtered through the liver and kidneys.

 

My protocol worked and my UTI symptoms have all but gone

I felt something change in my body around day 6 and the smell of my urine, which had a chemical odour, now smelt sweeter.  In retrospect, maybe I should have stopped at this point, but I carried on to complete 13 days in total.  I came off the fast with some whole fruit and grapes for the next couple of days and then I gradually started adding more veggies and salads etc.  I wasn’t getting the urethral pain on voiding any more except for one incident a couple of weeks later when I made some pumpkin soup with spices and got a bit of a twinge.

So now it has been 10 months that I have been symptom free, though I do find that I get a bit of frequency if I have been drinking a lot of liquid.  I still feel there is a weakness in that area and I am trying to be reasonably careful with my diet in eating lots of greens and salads.  I still don’t know if this is a cure or a remission, but I wouldn’t be scared of doing a fast again having seen the results from this.  In fact, I am going to go to an Ayurvedic clinic in September (2017) to do the panchakarma cleanse, so hope that will continue to maintain where I am at now.  I will update this afterwards if I feel it is helpful.

 

My tips to help you find your own solution

  • I was asked what advice I would give others who are facing this rotten disease.  The first thing I would say would be to keep an open mind with regards to the different treatments.  Some people I have met have been totally won over by the promises of a well-meaning doctor or urologist, thinking that they have ‘The Cure’, but the illness seems to have so many underlying issues that one treatment doesn’t fit everyone.  On websites you will see people seeking help who feel their IC has been caused by a wide range of issues: diet, gut, Lyme, ME, pelvic floor, prolapse, hormones, embedded bacteria due to catheter or UTI, or a combo of these.  The range of successful treatments has been varied too and I would urge you to test as much as you can possibly afford to;  try and understand what it is that you are dealing with; and talk to as many girls on websites as you can who have similar symptoms.  Try and keep a diary and notes with regards to food, supplements and medicine that you can use, even if you don’t think they are particularly helpful at the time.

 

  • The other thing I think is really important is to try and do your best to get your body as healthy as you can with diet, exercise and meditation or visualisation if possible.  I found this to be of enormous benefit in giving the body a chance of healing.

 

  • My thoughts and wishes of wellness and hope go out to all of you and if there is anyone would like to contact me for any more information, if you feel this pathway of healing/remission is right for you, please don’t hesitate to message me through the contact page on this website.

 

  • Thanks to the website organisers for making this possible for all of us.  If it hadn’t been for websites like this I would not have been able to find the information to be in remission, or hopefully cured, today.

 

Please note: The molecular DNA testing described in this story is offered to international customers at Pathogenius/MicroGen Dx in Texas, USA. This form of testing is expensive 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 Australians who have accessed DNA testing, but their local doctor has not understood how to interpret the results and prescribe appropriate treatment for chronic UTI, 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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11 Comments
  • Laura
    Posted at 05:52h, 03 October

    Thank you , your story is so like mine, it’s inspiring and I need to find the energy to do what you’ve done and be disciplined in dieting and determination

  • Diana G
    Posted at 07:00h, 03 October

    Hi Julie, how did you find a US doctor to give you a referral for Pathogenius?

  • Chronic UTI Australia
    Posted at 08:19h, 03 October

    Hi Laura, thanks for commenting on Julie’s story. We will make sure she sees this. You might find more inspiration in some of the other patient stories featured in our monthly blog: https://www.chronicutiaustralia.org.au/blog-2/ We hope you find these stories helpful.

  • Chronic UTI Australia
    Posted at 08:29h, 03 October

    Hi Diana, thanks for showing interest in Julie’s story. Many US and international patients who access this type of UTI testing are treated by US Nurse Practitioner, Ruth Kriz. You can find contact information about Ruth here: https://www.chronicutiaustralia.org.au/chronic-uti/what-to-do-if-you-think-you-have-a-chronic-uti/ .For those who are not under a US practitioner, you can still access testing through RTL Genomics in Texas http://www.rtlgenomics.com . However, people who have taken this route have said it’s important to enquire about the cost involved. They have also said it’s important to work with an experienced practitioner to properly interpret the results and treat accordingly, as some have found their local GPs are not able to. There’s more information on this page about testing (scroll towards the bottom): https://www.chronicutiaustralia.org.au/uti-testing/

  • Colm
    Posted at 09:10h, 19 October

    Brilliantly written, thank you. I will share it

  • Chronic UTI Australia
    Posted at 10:07h, 19 October

    Thanks Colm, please do share. Julie has done a great job telling her story and helping others.

  • Rosa s
    Posted at 14:49h, 28 November

    How can I contact you I live in Illinois and am desperate please help

  • Chronic UTI Australia
    Posted at 16:44h, 28 November

    Rosa, we will put you in touch.

  • S barry
    Posted at 23:30h, 20 November

    Hi julie
    How are you doing now?

  • Marnie
    Posted at 04:12h, 14 April

    Thankyou so much Julie.
    I wanted to ask about the fast you did. Did you just drink water?
    Xx

  • Chronic UTI Australia
    Posted at 14:24h, 14 April

    Hi Marnie, please email us and we will try to connect you with Julie contact@chronicutiaustralia.org.au

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