(Julie’s story was updated in March 2023.) 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 strengthened 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.

UPDATE:  Fast forward to March 2023

I continue to be totally well and haven’t had any sort of relapse for over four years. In the first year after the fast, I did have a couple of setbacks. I met a new partner and having sex triggered a flare twice within the first year.  However, there seemed to be a difference this time and the UTI and the bladder pain disappeared within a couple of days.  Nowadays I am totally symptom free and have not had any setbacks.

What would I do differently now if I was faced with the same situation again?

I would definitely still do the fast as I am convinced that it was through autophagy that the bacteria in the bladder cells were eliminated.

At that time there wasn’t as much information available with regards to how to fast and looking back I feel I made two big mistakes, which I would avoid should I have to do a long fast again.

My first mistake was not using electrolytes.  I know many people can fast on water alone, but it wasn’t right for my body type.  Ten days into the fast, I was feeling terribly weak and had a high heartbeat, showing I was putting too much stress on my body.  Electrolytes help to maintain the salts and minerals in the body and without them cells can’t function properly, so I was putting extra stress on my system which increased the fatigue.

The second thing I should NOT have done was to come off the fast with fruit which would have sent the glucose a bit off the scale. I now do two day and three day fasts from time to time and my way of breaking the fast is always with a veggie broth.  I follow this within a few hours with a veggie soup.  Vegetables, especially the non-starchy ones like kale, brussels, beans etc., don’t release glucose into the blood as quickly, so it is much easier for the pancreas to process.

I would still advocate for as much exercise as you can reasonably handle.  For me it was walks and yoga, but I think it is important to listen to our bodies here.  Having done a lot more reading on this aspect of health for healing, the importance of movement is paramount for a healthy body on so many levels.  It helped me too on a psychological level as I was feeling so depressed with the illness.

I came across my health diary when I was cleaning out my storage area the other day.  I had documented what I was eating, how I was feeling and the severity of my flares on a scale of one to five.   The illness had lasted the better part of a year.   I nearly threw the diary away as it brought back memories of how sad and desperate I felt at the time.   I reread the whole history from when I first got the problem and then going down all the cul-de-sacs trying different herbs, remedies and protocols.  Nothing seemed to work until the fast. After that I felt something had changed.

I don’t know if this is the answer for everybody, but it certainly worked for me.  I am always happy to chat if anyone feels this may help or if you would like more detail, so please just reach out through Chronic UTI Australia and they can put you in touch.

*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.