Simon Jones

Simon Jones

Coventry, UK
Date : 02/11/2019
Simon Jones's Experience

My experience began in April 2017 with a really bad cloudy UTI for which I ended up at our local hospital. My urine was so cloudy the doctor did not even need to test. A 7-day course of Nitrofurantoin was prescribed and I thought that would be the end of that. I continued to experience pelvic pain. I had an ultrasound test which showed nothing around June 2017. One doctor suspected Prostatitis but he wanted to give me Cipro which I though was a little over the top. A few more doses of Nitrofurantoin were prescribed, to no avail.

Move onto August 2017 and I get a skin infection tracking up my leg from Athlete’s Foot. This was treated with 14 days of Flucloxacillin. After around 12 days I had to stop antibiotics due to diarrhea. I was diagnosed with Clostridium difficile bacteria and felt very rough. Now, this was my 2nd experience of C. diff after contracting it in August 2016 again from a skin infection in the foot that was treated with Flucloxacillin and Clarithromycin. Both bouts of C. diff were treated with 10 days of Metronidazole, but it left me with an inflamed bowel and weird bowel habits. That, after 3 years, is not always normal. I also have the constant risk of it coming back from any antibiotics.

The pain in my pelvis subsided but I still had a urinary frequency. Doctors were not much help. Move onto February 2018 when I had another bladder infection which was also treated with Nitrofurantoin again. This did not cure at all really but all test results for UTI came back clear. Move onto April 2018 and I got a really bad UTI and ended up at the out of hours hospital again and was given Trimethoprim-Sulfamethoxazole. This helped for a few days before the bacteria became resistant and the UTI came back full force! My local GP gave me Nitrofurantoin again but after 24 hours my symptoms became much worse. I was very ill overnight, developing low blood pressure, being sick, having kidney pains, etc. I ended up being admitted to the local hospital with suspected prostatitis. I was offered choices of Cipro, Amoxicillin, and Metronidazole. Doctors were very cautious though due to my 2 episodes of C. diff. They eventually decided to monitor for 24 hrs with Nitrofurantoin and the infection started to subside. Blood tests showed high infection and possible signs of sepsis.

The pain continued though and more tests were done but blood tests and urine tests were clear. One very friendly lady GP specializing in sexual health suggested a sperm sample test. This came back positive for Enterococcus with a suggestion to use Amoxicillin as a first-line treatment. GP was weary again due to C. diff as urine was clear and blood tests normal. After a few more weeks of pain, I decided to opt for the 14 days of Amoxicillin, but after 10 days I developed diarrhea. I push to the 12th day but after consulting my GP several times through the course of antibiotics I had to stop and test for C. diff. I may add I had seen a urologist at this point and he only suggested carrying on apart from another ultrasound which showed some small calcifications in the prostate which may harbor bacteria.

The pain in my anal and perineum region subsided from the Amoxicillin and I hoped all would be well, but by August 2018 I was still in the considerable bladder and pelvis pain along with urinary frequency and urgency. A 2nd urologist wanted to prescribe Ofloxacin even though the sperm test was now clear. But my GP would not allow me to take due to my C. diff so I was stuck between the devil and the hard place!

Move onto joining the Facebook page Prostatitis. Here I met Pranav who suggested maybe trying Phages and having my samples sent by courier for testing to Eliava clinic in Georgia. Although expensive, I investigated the science as I have studied Microbiology in brief and spent some time in labs growing things on Petri dishes as work experience, so I was happy to research the subject. What I found was very interesting.

I discussed with a few of my GPs who knew nothing until they also investigated. I had a really interesting conversation with my chiropractor of all people who did a module on phages in her studies. A friend at work had also done a module on phages in her Biology degree but had chosen to compute.

I decided due to my experience I would try phage therapy and I sent a sample to Eliava. This came back with Enterococcus Faecalis again in sperm and urine as well as one Staph bug. Both were sensitive to normal standard phages and it was suggested I travel to Tbilisi.

Now I have only traveled to Europe and the USA so I was very nervous! I have a young family and a wife who works, so organizing to spend 2 weeks in Georgia would not be easy as I would have to travel alone. I organized an Airbnb flat for my visit and organized flights and dates with help from Pranav along the way.

In October 2019 I arrived in Tbilisi. During my first visit to the clinic I found them very helpful and professional. Urine and semen samples were taken for testing along with organizing an ultrasound again of bladder and prostate. This was yet again to show some minor calcification.

My initial samples were ready in a few days and I was prescribed phages for 12 weeks. I still visited the clinic most days for the following week to check on my progress and also to receive some shoulder massage for free which often plays up under stress. After 2 weeks my final samples were ready and this confirmed the bacteria. I was sent home with 30 days of phages and transport kits to send samples back for testing.

After about 2 weeks I began to notice the effects of phages and started to sleep better, not having to urinate so often at night. My phages finished in late December and within a few days, I felt the infection coming back. I had a few phages left over, so I took these. After this time I sent samples back to Georgia.

Amazingly my semen sample was clear but my urine still had Enterococcus Faecalis. I was advised to do another round of phages which I did. These lasted until April and I was yet again tested by sending samples. I still had Enterococcus and was feeling very deflated. I sought further help and advice in the UK and was referred to another urologist. This time I found a Russian born UK urologist who had heard of phages and was happy to support me. I had an MRI result which showed a severely inflamed prostate. She was very concerned and I was referred to Birmingham Heartlands’ NHS hospital for immediate check-up of bloods and immunology tests. I got this appointment within 6 weeks. All blood tests were normal. My urologist suggested taking the Phages with steroids to reduce the inflammation. I also chose to start a biofilm bacteria breaking protocol as well. These phages lasted until August 2019, after which I sent more samples for testing. My urologist also wanted me to do a Microgen test to check for bacteria.

Move to Late August 2019 and both Eliava and Microgen samples came back clear for Enterococcus. I had also started to take Amitriptyline for the pain. Move onto September 2019 and my Eliava sample showed a minor fungal infection and it was treated with Fluconazole. This has also helped.

I continue to get better and know it will be a long road. With the main bacteria gone I now have to wait for the inflammation to subside and urinary frequency to return to normal. All my previous scrotal pain has gone, my urinary frequency some days is now 4 hours during the day and I rarely wake at night.

I am so grateful for phages as I was able to take them for 9 months with no impact to my C. diff. Any long-term antibiotics could be fatal for me with such things as a ruptured colon.

Update : 16/06/2020
Here is a summary of my condition after finishing my last course of phages. Overall health is good, the pain level has improved and urinary frequency is improving. My latest test results from Medichecks Ltd. show no bacterial growth and no presence of white blood cells in the semen sample.
Generally I am feeling much better, still have the odd days but these are becoming much less in number and less intense. As the months go by, symptoms continue to get better.