Welcome to My Story: A UTI That Wouldn't Go Away
Why I started this blog:
I started this blog to document my journey. I had no idea that this blog would grow so significantly with the Interstitial Cystitis and chronic UTI community. This eventually led me to meet many patients from around the globe online. I saw so many women (and men) in severe suffering in medical Facebook groups. One thing that we all shared in common was that the majority of us were being dismissed by multiple urologists and medical practitioners, and being told we "did not have a urinary tract infection."
After multiple standard urine tests failed to find my infection, I discovered DNA next generation sequencing for my urine. I tested with two companies: Aperiomics and MicroGen DX. On the first batch, neither company found e-coli in my urine. The pain started to grow to significant proportions and the next test by MicroGen picked up a high growth of multi-antibiotic resistant e-coli. I continued to test with MicroGen DX every month to monitor the growth of the e-coli, which was consistently with me up until today. The following practitioners who signed my MicroGen kits are Dr. Michael Hsieh in US, Dr. Carley Akehurst from Canada, and Ruth Kriz in US.
Doctors I communicated with:
I spoke and/or wrote to multiple specialists learn more about this disease and/or their scope of practice. Most are outside of Canada. The American specialists included IC/Chronic UTI/Lyme specialist Ruth Kriz, urologist Dr. Michael Hsieh, and urologist Dr. Roscoe Nelson. All 3 are able to offer standard urine lab tests and MicroGen DX dna urine testing. The UK specialists included Chronic UTI urologist Professor Malone-Lee and Traditional Chinese Medicine practitioner Dr. Andrew Flower. The Canadian specialists included pelvic physiotherapist Dr. Kim, Traditional Chinese Medicine Dr. Tuen-Fan Chan, urologist Dr. Curtis Nickel (not permitted to post his contact info), and naturopath Dr. Carley Akehurst.
Doctors I worked with:
June 2018 - Sept 2018: In June 2018, I was starting to have trouble walking and was using a walking cane. My healthy self was now walking slower than an elderly person, and my bladder pain was growing. I started doing Traditional Chinese Medicinal herbs (TCM) with Dr. Tuen-Fan Chan in Canada. At first, he was targeting at the infection, but we weren't sure what was causing the infection. The pai was still there and I ended up in a wheelchair at this point. Then in July 2018, I flew to DC to see Dr. Michael Hsieh, who found multi-antibiotic resistant ecoli in his MicroGen DX test on my urine. I took the test results back to Dr. Chan so that he could change up his formula to target the e-coli. This is where I started to really feel the results. I took TCM everyday from June to September, and the severe bladder pain stopped in mid-September. I was fully walking by October. Although TCM healed the severe bladder pain, it wasn't fully healing the urinary frequency. From September 2018 to present day, I became a regular patient under Ruth Kriz in September 2018, skyping with her since we were long-distance. We handled my chronic UTI through oral antibiotics and natural healing, and still are to this day. I regularly saw Dr. Carley Akehurst as my naturopath, and she has consulted with Ruth before. I couldn't afford to fly to see Professor Malone-Lee in the UK, because I would need to stay there for 2 weeks to a month if I were under his care. Patients flying in to see him are advised to stay for 2 - 3 weeks for reactions to his oral antibiotic treatment. I still kept in touch with him over email and he sent me very interesting information. He has semi-retired and his practice is now run by his son and team members.
My UTI History:
Since childhood, I always had a mild overactive bladder which I attributed to having a "small bladder". I was used to the frequency and it didn't impede on my lifestyle anyway. It didn't hurt, it was just taken as "I have a small bladder thing." I would avoid going to movie theatres with friends because I would have to go to the washroom halfway through a movie. Also, for road trips, I would only go with family because they could stop along the way to let me use the washrooms. I wouldn't go on long driving trips with friends because I didn't want them to keep stopping for me for every restroom break. I could take ferry rides out with friends since there were washrooms onboard. e had weak bladders.
When I was somewhere around 10 - 12 years old, I started to get strange UTI-like symptoms, but I only had them for a few times. I was too young to be sexually active, so it was most likely caused by drinking not enough liquids, or perhaps a food that really irritated my bladder, or a mechanical problem in my bladder area. On some nights, I would have to urinate every 5 minutes, but there was no burning, stinging nor pain, and the problem would magically disappear in the morning. It was just an extreme urgency and it only happened a few times in my elementary life. We never went to a doctor for it because it was so short-lived. To this day, I still don't know what those episodes were. I didn't get a full-fledged UTI until I was an adult. Then I got UTIs on average once a year to once every 2 - 3 years. Both my dad and grandma had a few to several urinary tract infections, which were always resolved by a week of antibiotics. So maybe this has something to do with genetics - maybe we have a weak bladder.
I got my first UTI in 2002. I had a UTI in 2002, 2006, 2007, 2010, 2011, 2012, 2013 and 2014. They always came from if I held my pee in all day or if I barely drank any liquid in the day (both reasons were due to fast-paced corporate jobs). They always were easily resolved by taking Ciprofloxacin 500mg, but the interesting thing to note that Macrobid didn't work on mine, and a 3 day course would never be enough to resolve my UTI. It would have to be at least 5 days. I learned later from Ruth and some chronic UTI websites that 14 days is better to fully slaughter a UTI. Many times, my UTIs would not show up as positive in the urine dipstick test at the doctor's clinics. They still prescribed me my usual round of Cipro and I would be healed and off on my merry way. But in 2018, I would get the UTI from Hell that would lead to a chronic UTI and my struggles throughout this blog!
My Current UTI-From-Hell Problem:
I have urinary tract infection symptoms which mimics symptoms similar to Interstitial Cystitis patients. As the UTI was allowed to continue ravaging my bladder because no doctors knew how to treat me, severe bladder pain eventually put me into a wheelchair by June 2018. This blog is my search for clues and answers, and you'll find that I actually flew out to the US while in dire pain. My current problem started with a ferocious UTI on February 20, 2018. I did not finish my course of Ciprofloxacin 500mg antibiotics (it was killing the UTI successfully) and we theorized that my mistake created more powerful pathogens that became antibiotic-resistant to continue attacking my bladder for many months on. Eventually, this theory would be proven correct, but at the time, we didn't know yet. A cystoscopy was done in April 2018 that showed my bladder was pristine perfect and had no signs of any ulcerations nor wounds. Eventually in July and October 2018, I would find out that I have antibiotic-resistant e-coli from MicroGenDX, which rules out all other diagnoses I was given like Interstitial Cystitis and Pelvic Floor Dysfunction.
Why I Didn't Finish My Antibiotics:
I didn't finish my 1st course of antibiotics because I was terrified of another UTI and wanted to "save the rest" for another future emergency. That was such a stupid blunder. I should have finished my full 10 day course of antibiotics and then my UTI would have been cured fully as usual. Then I could go to the doctor to get a prescription for antibiotics for a 'just-in-case' future moment instead. At the time, I didn't know we could do this! You get the prescription and leave it in your room until that moment comes. The prescription can sit for 1 year. Had I known this, I wouldn't have to run to a drop-in doctor every time to get antibiotics while in UTI pain. I could just go to the pharmacy to pick up my prescription right away when a UTI strikes. This is if you know which antibiotics work for you. In my 16 years of UTIs, Ciprofloxacin 500mg was my successful cure so I always stuck to it.
Verdict:
Always finish your course of antibiotics if it is killing your UTI. If it isn't improving your UTI at all by the 3rd day, get a different type of antibiotics. If your doctor refuses, go to another drop-in doctor who will. If that drop-in doctor refuses, keep finding another. Sometimes I had to go through 2 or 3 drop-in doctors in a day to get the right antibiotics that I requested to successfully cure my UTI. Only you know your body best! Make sure your antibiotics is long enough to kill your UTI. 3 days is not enough. The course I usually need is 7 or 10 days to slaughter my strong UTIs. Eventually, I may need 14 days when that time sadly comes. The only antibiotics that has been successful for all my UTIs is Ciprofloxacin 500mg. I don't know why, but Macrobid, Bactrim / Septrum, Fosfomycin, and Amoxi-Clav can't do anything for my specific UTIs.
My 2018 - 2019 UTI From Hell's Timeline: What Happened and Why?
Like I mentioned above, my UTI started in Feb 2018, and this is how it all happened.
2018 February to March:
• I got stomach nausea and didn't eat or drink for almost a week. Due to very low fluid intake, a UTI happened. I was given 10 days of ciprofloxacin (helped up to 90% and I stopped on day 6 thinking I was better and to "save the rest"). Usually, I need to take 7 - 10 days to finish them off. Big mistake: It killed off the weak ones and left the strong ones behind to grow. The UTI returned with a vengeance.
• A drop-in doctor prescribed 7 days of Septrum (helped only up to 20%, stopped taking it on day 4 or 5 because they weren't helping). I knew they wouldn't help and told him to give me Cipro, but he refused. I should have gone to a different doctor at that point to get Cipro to kill off the remaining UTI.
• I was finally able to see my family doctor to get 10 days of ciprofloxacin (helped up to 80% and I would have most likely been healed if I took several more days, but my family doctor went on vacation!)
• I had to go back to the drop-in doctor (the guy who refused to give Cipro) and he gave me 2 sachets of monurol fosfomycin (was given 3 sachets but stopped at the 2nd because they didn't do anything). I knew it wouldn't work. I should have gone to a different drop-in to get Cipro to finish the job. At this point, my bacteria have been given so many breaks in-between Cipro that they are learning to become resistant.
• I finally saw a different drop-in doctor to get another 10 days of ciprofloxacin. Unfortunately, they helped up to 50% and suddenly stopped working! Now the pathogens have learned to become resistant to Cipro, or all the pathogens sensitive to Cipro were killed off and some other pathogens emerged.
• Family doctor is back from vacation but he can't prescribe Cipro since I told him they stopped working! He gave me 7 days of Macrobid to see if it would help, but it only helped up to 40%. We didn't do more than 7 days, because I was seeing a urologist on the 8th or 9th day for a cystoscopy.
As you can see, some of the antibiotics made the UTI initially feel better, but then it would get worse again. It was pure hell. The raging burning of the urethra, stinging urine, and the feeling of urinating razor blades made me feel hopeless, anxious and depressed. The pain was severe. I had never been in this much torture. There were nights that I got almost no sleep because I was up urinating every 30 minutes all day and all night 24/7. The urge to void would happen immediately right after I urinated, but I would try to hold out until every 30 minutes. It was incredibly frustrating, draining, and exhausting. It tolled on my mental well-being and mood as well. I went from a happy somewhat healthy person to a suicidal depressed person in constant pain.
2018 April: Beddridden in substantial pain for over 2 months, suffering depression and suicidal thoughts. Had dull bladder pain and cystoscopy showed bladder was fine. Urologist prescribed me long-term low-dose Macrobid antibiotics, but about 3 weeks in, she told me to stop taking them because she couldn't find any infection in my urine cultures. I was still in pain and feeling like I had a UTI. Then I discovered eating an alkaline diet of raw vegetables and drinking only spring water cut my urine stinging and urethral burning pain down by 60% literally overnight. Was on a low dose of antibiotics but was told to stop after 2 weeks on it because "no infection was found in urine". Dull bladder pain remains.
2018 May: Slow recovery in progress by researching on the net for an IC diet and IC supplements. Stinging urine pain cut down to nearly almost 100% by late May. Urinary frequency cut down by 50% on the alkaline and spring water diet, 1/2 tbsp of baking soda 2 - 3 times a day, and 2 to 4 teaspoons of D-Mannose powder a day. No antibiotics. Dull bladder pain. No longer bed-ridden and can take 30 minute walks slowly. I began to get pro-active in researching cures and methods of pain management, and created this blog in May 2018. I wanted to share what I have been learning on experimenting with decreasing UTI or IC symptoms on my journey to healing.
2018 June: However, there were days when I felt suicidal because I felt so isolated and frightened about the "unknown" of this bladder disease. There have been cases of suicide from patients who suffer from IC, so I was not the only one who felt this way. Eventually, I attempted a failed suicide (low suspension hanging) on June 9th because I was frightened that I wouldn't be cured. I was frankly so tired of it all mentally, and felt isolated because nobody understood what this was. On the positive side, I'm voiding at every 1- 3 hours, which is a great progress. But I still feel the urge at about almost every 25 minutes to an hour. I'm able to hold it for an extra 1 to 3 hours so I can give my urethra a break from peeing so much. Almost no stinging urethra or urine. I've lost so much weight down to 83 lbs while on the raw vegan diet and I'm constantly hungry and fatigued. On June 14th, my dull bladder pain suddenly became severe out of nowhere! I ended up walking with a cane and could only hobble at a turtle's pace. Eventually by June 20th, we were talking about putting me in a wheelchair because the pain was so bad. I discovered that Traditional Chinese Medicine was able to keep the pain down from "excruciatingly suicidal unbearable" to "barely tolerable intense" severe.
2018 July: Urinary frequency is getting better and there is no stinging or burning at all in the urine. I feel the urge to go about every 30 minutes to 45 minutes. But the bladder pain is severe, so I am immobile and in a wheelchair. It was time to find a urologist who could listen to me and who believed in DNA next generation sequencing, so I flew out to see Dr. Michael Hsieh. We found 1.5 million e-coli in me through the MicrogenDX DNA next generation urine testing, which is resistant to the Quinolone family (ciprofloxacin and levaquin).
2018 August: I had 2 rotating antibiotics for 14 days which didn't help, but other methods did. I started up an IC diet Instagram to help others since the IC diet was the biggest game changer for me. By late August, my urinary frequency is getting better. I still feel the urge every 45 minutes to an hour, but I can hold it for every hour to 2 hours. This feels much more bearable. There are times in between where I *almost* forget I have this problem, maybe for half an hour, but the anxiety creeps back in again when I feel the urges to wee. The bladder pain and immobility remains.
2018 September: I started implementing a Candida Diet into my already restricted Alkaline IC Diet, so I was even more limited. However, it made a huge difference, the urinary frequency changed from 8-11x a day to around 8x a day on average. I stuck to that diet. About 2 weeks into this, I started upping my D-Mannose even more. I now have signed up to see Ruth Kriz to get her to look after my UTI.
2018 October: I begin to add more new supplements, since I've barely taken any supplements before. Ruth Kriz found that I'm now at 72,000 e-coli through the MicrogenDX DNA next generation urine testing, and it is NOW more resistant! It is resistant to the Quinolone family (ciprofloxacin and levaquin) and Becta-Lactam (1st and 2nd generation antibiotics) because I did Augmentin back in August, so this totally makes sense. I'm healing, but the scary part is that my pathogens are mutating smarter.
2018 November: I did Macrobid + Interfase Plus from end of Oct to early November, but it made my symptoms worse. I did a MicroGen test on November 13th and saw that my e-coli count had tripled. My bladder pain returned and my lower right ureter tube started to hurt. It was really scary, I was so depressed. I reversed the damage by eating vegan and being more strict on my diet. At this point, I'm not sure if I should continue on with oral antibiotics at all. Still thinking about what I should do next.
2018 December: I'm feeling better than November now, but I feel like I may have fallen backwards to how I felt back in September or October. November's failed treatment had made things worse, plus I haven't been eating as strictly as I should. So I would say this month, I feel like how I did back in September or October. I am not doing any treatments this month, just taking a break mentally and physically and then will try something else in January -- just not sure what yet. I will get back to eating more strictly to try to let the bladder recover from November's antibiotic damage and not-so-good eating damage. I discovered that buffered Vitamin C was making me worse and keeping my symptoms! Once I stopped the Vitamin C, the urethra felt a lot better. Then I went back on it and the symptoms came back. So my buffered Vitamin C was the devil. Threw that out. I've stopped almost ALL my supplements at this point. If you watched my YouTube, I was taking something like 20 supplements. I decided to give my bladder a rest, and am only taking probiotics and D-Mannose. That's it.
2019 January: This was a really good month. I was literally almost pain-free. My symptoms are 70% better. I'm able to introduce more foods now but I still eat clean. I tried out Bladder Ease and it made me worse. Stopped that and got way better. It works for some people (it healed Jessica Parks - famous IC patient on YouTube), but it completely backfired on me.
2019 February: There was a week or 2 where it slid down and got worse in early and mid February. It was kind of depressing. I was so scared about that. But by the end of February, I felt 80% better. I have several hours of the day where I feel like I'm almost normal and almost symptom-free. The symptoms of mild frequency and little 'urgency niggles' in my urethra are still kicking around, but they seem to come in the afternoon and evenings and weren't as strong as before. I noticed if I eat only raw alkaline veggies or if I don't eat at all, the symptoms are way less. I do have mild lower right ureter tube pain (ureter, NOT urethra) that comes and goes, and I don't know why it does that. I start to introduce more foods now, but I'm still careful about what I eat. If you want to know everything I did to get up to 80%, read my February 24th post: My Interstitial Cystitis Recovery 1 Year Later: 80% Healed my chronic UTI.
2019 March: I begin the Nystatin treatment on March 2. I talk about my dosages and progress here, and how I was influenced by Bill, who discovered a cure for IC by using Nystatin.
This post was last updated in May 2019.