How I Healed My Bladder With Antibiotic Therapy
Disclaimer: Martha does not proclaim to be a medical authority. Any treatment options or medications should be discussed and monitored by your physician.
I believe I owe my life to Dr. Paul Fugazzotto! Suffering with IC has been the worst experience of my life and until I found him I did not feel my life was worth living. I think his discovery of bacteria in the specimens of 99% of IC patients was truly revolutionary. I will always be grateful to him for persisting in treating IC patients and "spreading the gospel" in spite of almost universal nay saying among the medical/scientific community. He continues today working in his lab and caring for the patients all over the world who depend on his classical culturing technique to find a pathogen and to suggest an antibiotic to treat it.
I would like to backtrack and give the history of my personal struggle with IC. My first symptoms appeared out of the blue over thirty years ago when I was 38 years old. I was returning from a week's vacation with my husband when I started having frequency. I went to my doctor immediately upon my return and he could not find any sign of infection. I don't remember ever having a UTI in the past, either. He said I could have "irritable bladder" and sent me to a urologist. At that time the diagnosis of IC did not exist, but I was given instillations of silver nitrate for two months to no avail. He performed an operation - perhaps to stretch the urethra, I don't remember - and I improved over a period of months. For the next 20 years I had only intermittent bouts of frequency but they disappeared on their own.
Then 12 years ago, while on vacation from a very stressful job, the frequency returned with a vengeance. I went to two urologists and the second one immediately diagnosed IC. He started me on silver nitrate and then did three hydodistensions under anesthesia and instilled Chlorpactin (a caustic substance) at one-month intervals. There was still no change in the frequency and pressure. He did not think diet had any effect and said he did not think stress contributed to the symptoms, so I continued living the way I had been and eating and drinking everything I wanted. This was at a time when not as much was known about the treatment of IC or at least it wasn't disseminated very widely. A friend gave me a cassette of guided meditations by Bernie Seigal and that is the only thing that relieved my symptoms, at least temporarily. I traveled to Boston to see Dr. Sant, a well-known specialist in the IC world and he advised DMSO. Although my urologist had never used it he agreed to try and I had 6 or 7 instillations, again to no avail. I had tried Pyridium along the way and it did not help, but he gave me Xanax, which was the only way I could get any sleep at night. I quit my job since I was fortunate in not having to work, only working because I enjoyed it. I knew the stress was not healthy.
In retrospect I realize that my symptoms were mild to moderate, mostly consisting of frequency and pressure and only occasional pain. I was not in touch with other IC patients so did not have a basis of comparison. (This was before the days of the Internet.) However, my tolerance for enduring the symptoms was wearing down and I considered having my bladder out. Then, almost two years into the suffering, a friend saw an interview with a doctor on TV and took down the address of the ICA, an organization I had not even heard of. I immediately got on their mailing list and the first newsletter I received had an article by Ruth Kriz telling her experience of being healed using Dr. Fugazzotto's culturing technique and long-term antibiotics. She is a nurse practitioner and had done much research on her own in order to find Dr. Fugazzotto. I picked up the phone and called her and she told me how to send a specimen to him. I did this and he returned his report saying he had found enterococcus. I was elated finally to have something tangible to account for my symptoms! My urologist was willing to prescribe an antibiotic since nothing he had tried helped.
I wish I could say I was healed overnight, but that isn't the case. The good news is, though, that I started to improve with some ups and downs. At that time neither the doctors nor Dr. Fugazzotto stressed yeast control, although Ruth cautioned the need for it. I continued to send specimens to Dr. Fugazzotto who monitored the presence or absence of bacteria and the level of antibiotic in the urine (something probably no one else in the world does). The antibiotic I was on, Augmentin, tends to build up in the tissues of the bladder and to give the same symptoms of IC. (It is really a combination of amoxicillan and clavulanic acid and is very effective against enterococcus but needs to be monitored). I cut down on the dosage after two months and improved.
Unfortunately, I did not keep a log of my dosages and level of the symptoms as I continued on the antibiotic. I would stop briefly and if the symptoms returned I went back on the antibiotic. My main contact was Dr. Fugazzotto who always took time to help me analyze my symptoms and figure out the treatment level I needed. He was unfailingly optimistic that I was on the right track and really kept me going. Eventually I found some other patients and, through them, I heard about B. J. Czarapata, a nurse practitioner who specializes in treating IC. I saw her in person several times and talked on the phone. She stressed yeast control measures, diet, and pelvic floor muscle exercises and was a marvelous help. I believe my pelvic floor was in bad shape from years of holding my stress in that area and the spasms were causing pain and discomfort. To this day I do the exercises she and a good physical therapist gave me. The Kegal is one very good one and also a stretching exercise for the piriformis muscle. B. J. is located in Fairfax, VA and can be reached at 703-591-5443. She believes, as Dr. Fugazzotto does, that infection is a component of IC and needs to be treated. She uses a lab in her area that will do a broth culture like Dr. Fugazzotto does. Dr. Fugazzotto has a Website (http://pw1.netcom.com/~jewel3/uti/bacteria.html) and also can be reached at 605-342-8989. He will send a kit and patients can mail him a specimen for culturing for a $25 fee.
I have been well for seven years now. Today I lead a normal life with only occasional times of frequency. These usually subside after a day or two during which I try to stay away from coffee or things that irritate my bladder. Otherwise I eat and drink anything I like. I would say that I used antibiotics on and off for a period of 3 years. It is possible that if I had used aggressive yeast control measures, such as Nystatin and an acidophilus supplement, and done pelvic floor muscle exercises earlier in my treatment I would have responded sooner. Dr. Fugazzotto believes that it is necessary to completely eradicate the enterococcus or other bacteria which he finds; however, B. J. does not think this is necessary nor is it desirable to stay on antibiotics for more than a few months. While I do not like to overuse antibiotics they worked for me while no other treatment did, and my life was not worth living (so I thought) when I was suffering. Of course today there are many more treatments, but many have side effects, are very invasive and almost tortuous to endure or do not have a good record of alleviating symptoms. And it seems to me that is all they are doing, treating the symptoms, and not getting at the cause. I know people who have been cured for over 10 years using the antibiotic therapy with good yeast control measures at the same time. Unfortunately, the medical profession in general does not stress yeast control, but it is a must when antibiotics are used for more than a week or two.
Since I believe so passionately in the theory proposed by Dr. Fugazzotto I am actively working to set up research to test scientifically his findings. While he may not have the complete answer to the puzzle of IC, after much study and first hand experience I am convinced that he has made a breakthrough and he deserves to be heard and awarded credibility in the overall IC community. I have met him and spent a great deal of time discussing IC and asking questions. He is extremely knowledgeable and is anxious to have his findings tested in a fair and accurate way. I believe that we need, and the patients deserve, to have the best scientists working on this problem which has persisted for over one hundred years. My goal is to at least make a start in this direction.
Martha P. Foster