01 Sep Martha’s Chronic UTI StoryReading Time: 11 minutes
Martha’s story began a number of decades ago when she began experiencing UTI symptoms out of the blue. Despite her symptoms, all the UTI tests returned negative for infection. After going through the usual investigative procedures, she was given a diagnosis of interstitial cystitis (IC). Her persistence in wanting a more logical explanation led her to find a superior urine culture test that was able to identify her bacteria. She was then finally able to access antibiotic treatment, eventually putting an end to her chronic UTI. Over many years she has personally helped countless people from different countries, along with developing an information website and sponsoring a science research project in 2003. As a determined and proactive patient advocate, she continues her pursuit in networking, sharing information and raising awareness of inadequate UTI testing and treatment. This is her story.
I suffered UTI symptoms for two years and was diagnosed with interstitial cystitis (IC)
Following is my story that begins over 25 years ago and I am writing it to give others hope that there can be an end to suffering. I live in the USA and have been a patient of Ruth Kriz, nurse practitioner, for as long as she has been in practice. I suffered for two years with the typical symptoms of frequency, urgency and pain. I tried all of the usual treatments of the day to no avail. The third urologist I saw diagnosed me with interstitial cystitis (IC). My lab test came back negative and so he said he could not treat me with antibiotics. I did not have a history of urinary tract infections (UTIs) and so had never had antibiotics. The urologist tried everything that was available at the time and I traveled to Boston to see a specialist and he recommended a treatment using dimethyl sulfoxide (DMSO). My local urologist was willing to try it for the first time in his practice, but it was not helpful and may have harmed the wall of my bladder (as I found out later). I suffered for two years with no improvement and continuous negative testing. There was not much available to read about it and I felt pretty hopeless. I even considered having my bladder taken out.
I suffered for two years with the typical symptoms of frequency, urgency and pain. I tried all of the usual treatments of the day to no avail. The third urologist I saw diagnosed me with interstitial cystitis (IC). My lab test came back negative and so he said he could not treat me with antibiotics.
I found a retired microbiologist who cultured bacteria differently
Fortunately a friend saw a TV show on which a doctor discussed interstitial cystitis and gave the name of a national organization, the Interstitial Cystitis Association (ICA). She wrote down the number and I got on the mailing list for their newsletter. In the first issue there was an article by Ruth Kriz, a patient at that time, and she told her story and how she found a treatment that worked for her. Through research (without the internet back then) she found out about Dr Paul Fugazzotto, a retired microbiologist who was culturing urine specimens for patients who sent them to his home lab. Invariably he was finding bacteria, mainly Enterococcus faecalis, and sent a report to each patient. He knew the right antibiotic/s to list on the report and she followed his advice and began to improve. Of course most patients had been told by local labs that they did not have bacteria, and Ruth knew that, so this finding was beginning to give us hope. I read articles she sent me and a few doctors surmised the cause could be bacterial and this made a lot of sense to me.
I rationalised that IC affected mostly women and so did UTIs. UTIs were known to be bacterial so that was a logical conclusion when considering IC. Talking to Ruth was a huge relief. All that she reported made sense and I sent a specimen as soon as I could. I was lucky in that my urologist was willing to prescribe the antibiotic that Dr Fugazzotto recommended for me and I gradually improved. I did not hesitate for a minute and luckily I took a month’s treatment. I was using Macrodantin. After a break and another culture, Dr Fugazzotto recommended Augmentin which he said was better for deeply embedded bacteria. I stayed on it for two months but then began to have pretty severe symptoms. He actually measured the amount of antibiotic in the specimens and he said it had built up and the antibiotic itself was irritating my bladder. He changed to Amoxicillin which was less strong and I noticed improvement after a few days. I have never known of another doctor to look at a specimen to that degree. Very few infections are treated for months and he realized that this was going to take a long time but that eventually a patient could cut down the dosage and still control the infection.
Dr Fugazzotto’s culturing method
Since not too many patients knew Dr Fugazzotto, or realize what a breakthrough he made, I will describe his method. His culturing was not an unknown method but it had fallen out of use. It was called a broth culture. He realized it might help those with urinary tract symptoms but who were not found to have bacteria by the prevailing method. His method consisted of placing a small amount of the specimen in a rich broth to allow any bacteria present to grow out and would then could be seen on when plated on an agar plate. Some species are much slower to grow and the current labs do not want to take the time and labor to do this. One microbiologist told me they found Enterococcus at times but discarded it as a “contaminant”, while Dr Fugazzotto realised it was a pathogen if there were symptoms. He was known to allow a week or more for growth to occur since he knew all bacteria do not grow out easily or quickly. Thus he was able to find any species that were present and sometimes there were as many as three reported in my case. He did not believe in the colony count but said it was more important to know the species since some are actually pathogenic, while others are not but can cause symptoms and can be treated in two weeks. (We now know that it is not quite that simple because some of these do need longer to treat or return due to being hidden in biofilms and can emerge later.)
Some species are much slower to grow and the current labs do not want to take the time and labor to do this. One microbiologist told me they found Enterococcus at times but discarded it as a “contaminant”, while Dr Fugazzotto realised it was a pathogen if there were symptoms.
Dr Fugazzotto was identifying infections that were missed by standard cultures
We were mailing our specimens across the country (or even overseas) and critics said the bacteria would grow in numbers during transit. But he did not worry about the number, and since there is no such thing as ‘spontaneous generation’ the bacteria had to be there to begin with and that was the important thing. He realized that his method was helping many more patients and tried to convince the current microbiologists and lab technicians that they were missing key pathogens. But they did not listen. He was criticized and his message was overlooked by the mainstream. He charged only a minimal fee but was accused of making money as a “mail order doctor” as some called him. He continued to culture for patients until a ripe old age.
Meanwhile, Ruth found a lab near her and trained them to do basically the same kind of broth culture. They charged much more but she felt they were an adequate replacement for Dr Fugazzotto when he had to retire. I met him a few times and invited him to my city where I had lined up a researcher to duplicate his work. She used a molecular device and was able to find the same bacteria as his broth culture method. I felt he was vindicated but the work was not accepted for publication. As we know, scientists do not change their methods easily and this is still the case, worldwide.
Once on antibiotics, I started to improve slowly but surely
To continue my story, I progressed slowly but surely. I found that a regimen of antibiotics of a month or two, or sometimes longer, was enough to be rid of symptoms. But after a period varying from a few months to almost a year of being symptom-free, I’d experience a recurrence. Sometimes the pathogen was a different species, although Enterococcus was the main culprit. After years of this pattern Ruth told me about biofilm infections and that helped me understand what was probably happening. The bacteria would form a hiding place by going into a quiescent state and building a wall around them. This wall was almost impossible for an antibiotic to penetrate. Then, at some point, some of the bacteria would escape and in the open planktonic state they would cause symptoms again. I have known patients who have recovered with only the use of antibiotics, so perhaps it is possible for them to wear down the biofilm wall.
After many years I did begin to feel that happened to me. But meanwhile Ruth had found a high level testing lab that used the latest molecular devices to test urine and they were finding even more species of bacteria, even those that might be in a biofilm. For instance, my first test showed 11 different species, many of which I had never heard of. The testing showed the ‘load’ of each and that was a guideline for practitioners like Ruth to determine the likely pathogens. With the help of a compounding pharmacy she developed an antibiotic that was placed in a syringe and sent to the patient in order to deliver the antibiotic into her bladder directly. In my case, she had 14 syringes sent so the treatment was two weeks in length. Ruth had the pharmacist add a biofilm-buster, as they are called, that helps open up the biofilm so the bacteria hiding inside would escape and be vulnerable to the antibiotic from the syringe. After just one two-week treatment I sent another specimen for testing. It came back showing a few more species so I had one more two-week treatment. After this I felt no symptoms, so I did not have any more testing and have not had any recurrences for two and a half years as I write this (2017).
I progressed slowly but surely. I found that a regimen of antibiotics of a month or two, or sometimes longer, was enough to be rid of symptoms. But after a period varying from a few months to almost a year of being symptom-free, I’d experience a recurrence.
Throughout my treatment I used pelvic floor stretches that helped a lot. I went to several different therapists to learn which ones were best. I know that the muscles in my pelvic area were out of shape due to holding them tight in reaction to the pressure from the bladder telling me to empty it so often. This caused muscle spasms and pain and the stretching helped alleviate it. I still do the exercises to this day to keep the muscles in shape.
Science has come a long way in understanding the bladder microbiome
There are many advances being made since my early days. One is the finding that urine is not sterile as has been taught to medical and research scientists for ages. We found that in research I sponsored in 2003. Culturing and PCR testing were performed on 50 patients and 50 controls. All had at least some species including all the asymptomatic controls. So we know it is common to find bacteria in almost everyone (and we included males in our volunteer cohort) and that it is also possible to have bacteria without being symptomatic. A lab that is participating in a huge study of IC/PBS sponsored by the National Institute of Health has admitted that they now know urine is not sterile and the high tech molecular testing devices are able to find many more species of bacteria. They hope this is a great breakthrough in looking for causes of infection in some of us and the possible culprits.
Better testing is needed to get to the bottom of urinary syndromes
In summary, I would say that interstitial cystitis (IC), painful bladder syndrome (PBS) or chronic UTIs all possibly have a bacterial component that is not being discovered by present 24-48 hour culturing. Better testing is available and should be used. If bacteria are found, antibiotic treatment can certainly be tried. The dosage and time required will differ depending on the species found, the host defenses and the patient response. The improvement may be very slow and there will be ups and downs. Natural supplements have been used and provided success for some. If symptoms return after once being treated successfully, it is possible that the bacteria have formed biofilms. There are treatments for biofilm infections as I mentioned above, but research is under way to find more. Research is ongoing since there are still questions as to why some experience symptoms, and the majority do not, even though all may have bacteria. Complete healing is possible but other co-infections may need to be found and treated also. Lyme Disease is an example of an infection that affects the bladder and there are good tests now to test for it.
I would say that interstitial cystitis (IC), painful bladder syndrome (PBS) or chronic UTIs all possibly have a bacterial component that is not being discovered by present 24-48 hour culturing.
I realise everyone is different so one type of treatment will not treat all, but doses and meds and supplements can be tried and varied. You are the best judge of which are helping and you can work as a team with a knowledgeable practitioner. There are answers and the sites that say there are no cures should not discourage anyone from trying.
Accessing better testing worked for me and it might work for you
I would like to add that I hope patients will not be discouraged if they read some other websites where the bacterial theory is completely rejected. This has been going on for many years. I was removed from membership in one large site because I discussed Ruth Kriz and her method. I wanted to let patients know what had worked for me and for others, but I was accused of ‘advertising’. I think this goes back to Dr Fugazzotto’s findings and the fact that mainstream doctors dismissed him and the advocacy followed their lead. I believe this has held back more research into his method. Slowly a few practitioners are becoming more open and better testing is confirming the existence of bacteria that were previously not found.
The author of this blog story has a website that provides much more information about Dr Fugazzotto and Ruth Kriz called IC Resource Centre. The site does not include information about the more recent molecular testing she mentions undertaking through MicroGen Dx (formerly PathoGenius Laboratory). MicroGen Dx is now accepting self-requested samples from international customers (you do not need a doctor to make the request). Patients who have used DNA-based testing have said it is important to work with an experienced practitioner who understands how to interpret the results. This form of testing is not cheap and (depending on your practitioner) you may require multiple tests throughout your treatment, so please do your research to find out more about testing and freight costs.