IC Treatment

BACKGROUND

Interstitial cystitis has been considered of unknown etiology by the medical/scientific community for many years. There have been several theories proposed and a bacterial infection has been one. The symptoms of urinary frequency, urgency, and pain and pressure, some or all of these, are reported by patients. Many treatments for symptoms have been developed and some of these may help at least a portion of the population, but no cause has been identified. We believe that now it is possible to identify a bacterial pathogen or pathogens to explain these symptoms, and as a result an effective cure is proposed.

Over twenty-five years ago Dr. Paul Fugazzotto, a retired microbiologist, discovered that the use of broth culturing of urine samples revealed pathogens in the symptomatic patients when the traditional agar plate tests, commonly used by labs worldwide, reported “no growth”. Before retirement he had been the Nevada State Laboratory Director. He has a PhD in microbiology and a Master of Science in Public Health. After retiring he set up a lab in his home to carry on research into this finding and began to provide culturing for patients charging only an amount to cover the cost of equipment and expenses incurred.

Here in an excerpt from Dr. Fugazzotto’s website is a description of his findings and why he was able to find bacteria when most traditional lab culturing does not:

“Dr. Fugazzotto believes that the urine and pelvic screening tests in widespread use everywhere cannot give an accurate result for a large number of patients. They are based on the concept of “colony counts”. In this concept, you must have a high amount of bacterial growth in a specific period of time to be classified as having a urinary tract infection (UTI). He sees many problems with this approach. First, current tests are usually run for a short time: anywhere from 15 minutes to 48 hours. He runs his tests for 5 days, giving bacteria more time to emerge. He has information in his publications that show a large percentage of infections will be missed with the quicker tests. Second, conventional tests use an agar plate culture. This is a simple medium not well suited to isolating many urinary tract pathogens. He uses broth culture technology. This is a classic approach for isolating infectious organisms; but it is more technically demanding and costly than the simple approaches in widespread use. Third, he does not rely on colony counts, by which you must have 100,000 plus bacterial colonies on the agar plate to be classified as having a UTI. Dr. Fugazzotto looks for known specific pathogenic bacteria. Their presence in any number at all indicates the presence of disease. Fourth, conventional urine tests go through little or no special sample preparation. Dr. Fugazzotto carefully prepares his samples using techniques he has developed over years in the laboratory. He cleans/washes the urine/bacteria, to remove drugs and other urinary tract waste products.”

Soon after Dr. Fugazzotto began his culturing, a patient, Ruth Kriz, nurse practitioner, found out about his method of isolating pathogens and sent him a specimen. He found some pathogenic bacteria in her case and she began to use the antibiotic he recommended. She slowly recovered and her story is elsewhere on this site under “Information Articles”. She also discovered that diet was important, as well as good yeast control and the use of certain supplements to help heal the bladder as the bacteria were eradicated. She later found a lab, United Medical Lab in McLean, VA, that was willing to do broth culturing for patients. They are still providing this service, and they are one of the few in the country to do so. They will provide a report showing any pathogens isolated along with the antibiotics the bacteria are sensitive to. A doctor or practitioner will have to prescribe the medication. Experience has shown that it will take several months for the symptoms to resolve and for the bladder to heal.

Patients often ask why this method of culturing is not widely used. It appears that the medical/scientific community is satisfied that the current testing is finding any bacteria that require treatment in symptomatic patients. If no bacteria are found then many are diagnosed with interstitial cystitis. Many researchers have looked for bacteria over the past years and claim they are unable to find any. There are several reasons and one is that some bacteria are very fastidious and do not grow out easily and may take several days. Putting them in a broth culture encourages them to grow whereas in the traditional agar they often do not appear in 24 or 48 hours as Dr. Fugazzotto states above.

TREATMENT

Many have had success using antibiotic treatment for their chronic symptoms. The treatment is not the same as the usual treatment for what is commonly referred to as a UTI, caused by E. coli in most cases. In the case of an infection with E. coli the treatment consists of a week or ten days with an antibiotic. Since those diagnosed with IC have usually had the symptoms for months or years, the infection is more deeply entrenched, may be caused by a more virulent strain of bacteria, and requires a longer treatment with antibiotics and supplements in order to rebuild the immune system. It also requires close monitoring and so is different in many ways from the typical UTI treatment. Although the bacteria may not show on subsequent cultures once the antibiotic treatment is begun, it is important to continue the antibiotics for several months. The resolution of symptoms may happen slowly once antibiotic treatment is begun and it is difficult to predict how long this will take. It is important to be patient and do everything possible to allow the body to recover and the bladder to heal. It is tempting to give up when healing doesn’t happen immediately, but, as the success stories point out, for some it is very slow.

First, a broth culture is required to find the offending organism/s, and the culture report will include the results of an antibiotic sensitivity test. Testing laboratories, whether in a hospital or independent labs, do not perform broth cultures. These are more time-consuming and labor-intensive tests, and thus far the practitioners have been satisfied with the agar-plate test of 24 or 48 hour duration. The traditional agar-plate test does show E. coli so that is considered the key pathogen causing symptoms. But for chronic patients, even when the E. coli are treated, the symptoms usually return and persist. The doctors are baffled and therefore begin to consider treating the symptoms since they cannot find a cause. As most know, the treatments can be very invasive and/or cause side effects and are only palliative. Diet, of course, can help to control some of the symptoms for some people, but for most that is not enough and so finding the cause is the real key.

This article is not intended to describe the specific details of an effective antibiotic treatment since it will depend on the pathogen found via the broth culture and the condition and history of the patient. The first step is to arrange to send a specimen for broth culturing to United Medical Lab in McLean, VA. (unitedmedicallab.com) So far there is only one practitioner, Ruth Kriz, NP and former IC patient, who is thoroughly trained and experienced in treating with long term antibiotics. She has an office in DC and can be reached by phone (202-714-2415) to set up a consultation. She can treat patients by phone consults and is able to prescribe any necessary medication. She also uses supplements to help the bladder heal and to prevent problems like yeast infections. She has taught pharmacology and is also willing to work with one’s doctor. It is hard to stress enough, however, that this treatment requires some adjustments and specifics that most MDs are not trained in administering. It is theorized that the bacteria in chronic UT infections are embedded in the tissue or biofilm and thus require more extensive treatment. More research needs to be done to pin down specifics of how the bacteria invade or cause infections in the bladder and why they affect some people and not others. There are many theories but this article is not designed to explore that issue.

If, after several months, the symptoms are not gone or almost resolved, it is advised to have more testing done since there are other pathogens that can affect the urogenital area, or other diseases may be present that weaken the immune system and allow bacteria to invade organs such as the bladder.

RESEARCH

There has been one published study of the use of antibiotic treatment. This was done at the University of Maryland and they entered 50 IC-diagnosed patients in their research. They treated 25 with 6 different antibiotics for 3 weeks at a time, and gave the other 25 a placebo. At the end of the 18 weeks they found that 48% of the treated group improved and 24% of the placebo group did, but they did not feel this represented a major advancement in treatment. This study was published in the Journal of Urology in 2000 and apparently this ended any serious consideration of a bacterial connection to IC, although no one has absolutely ruled out a bacterial connection.

Other than the study described above, and the work Dr. Fugazzotto has done for years, there is little published data on bacteria in IC. Some scientists have looked for bacteria through culturing and PCR (molecular) testing but they claim they cannot find any consistent species that could be responsible for ongoing symptoms. Finally, some researchers at Virginia Commonwealth University embarked on a project to test the possibility that bacteria could be responsible for such chronic and devastating symptoms. This research was conducted over a period of many years and was finalized and presented to the annual American Society of Microbiology meeting in Toronto, Canada, in May, 2007.

In this study overseen by an institutional review board fifty patients and fifty controls were recruited and submitted clean-catch urine specimens. The specimens were washed and tested by the broth culture method and by PCR testing that is based on DNA. The principal investigator, Dr. Helen Fillmore, a molecular neurobiologist, decided to look for a type of Streptococcus, Enterococcus faecalis, since this was the strain most commonly isolated by Dr. Fugazzotto during his years of testing the urine of thousands of patients in his research lab. Dr. Fillmore theorized that others had not been able to find this pathogen using PCR methods since they did not use specific primers for Enterococcus. It is also possible that if Enterococci were found there were dismissed as contaminants. Dr. Fugazzotto believed that if the specimen was collected properly these were not contaminants and should be considered pathogenic (disease-causing).

The data showed a majority of IC-diagnosed patients were positive for Enterococcus while a minority of patients were positive based on the PCR results. This is the first study to show a consistent pathogen present in IC-diagnosed patients. More work needs to be done in order to explain how the bacteria invade and why only some people are susceptible. It is hoped that with this preliminary data there will be more funding made available for this vital IC research. Enterococcus is already being extensively studied in research labs, but mainly because it is found to cause infections in hospitalized patients.

Some doctors and patients have long felt that the chronic bladder symptoms are due to infection, but without the ability of labs to find pathogens there has been a hesitancy to treat the symptoms with antibiotics. Even with the research mentioned above it will take time to convince many doctors and scientists. Many see this as similar to the case of H. pylori that was found to be the cause of many stomach ulcers. It was difficult to change the minds of the practitioners who had been taught that ulcers were not due to bacteria.

At the conclusion of this section we have placed some stories written by patients, themselves. These patients describe how they gradually were successful in their treatment but these stories are not intended to be used as treatment guidelines. We are not medical authorities and only an MD or qualified medical practitioner should be recommending and providing IC treatment.

SUCCESS STORIES

HOLLY

Okay, it has been a long journey (extremely short when compared to many others), but a road back from hell for sure.

I think my problems started two summers ago, in July when I had a D & C for a blighted ovum (an empty sac was growing, but no baby/heartbeat), where I think I got an infection to begin with. Immediately after the surgery I got a UTI, which was treated with broad spectrum antibiotics and I felt better. Then in October of that year, it seems to me that after drinking a diet coke (something I rarely do) I came down with UTI symptoms again, and my GYN called in another antibiotic which seemed to get rid of it, but only a few days/weeks later, the symptoms returned.

They gave me more antibiotics, because I confessed that I stopped taking them before because I felt better, but never had a urinalysis in all this time. After a few more weeks of feeling better and then worse, they had me come in for a test, found no bacteria and referred me to a URO in January last year, which THANK HEAVENS was Dr. D. who was very competent and supportive. She is downtown, and very inconvenient for me, but soooooooo worth it. I am not very comfortable with male doctors anyway, and my GYN has always found awesome female docs for me in the past, such as a wonderful dermatologist that took my minor acne seriously and treated me, which no male doctor would ever do in 20 years of going to them. Anyway, Dr. D. had me complete the Ortho questionnaire, which indicated that I was “probably” an IC sufferer, so she put me on Elavil and Elmiron immediately, because her dipstick test in-office showed no bacteria. Well, I was not in a whole lot of pain at this time, but always felt pressure and the urge, but really no big deal in comparison to the nightmares I was to experience after that.

I always felt better on antibiotics, yet I was continuously told that I had no bacteria. I just never felt comfortable with this and my “IC” got worse and worse to the point that I was pacing the floor non-stop crying/screaming in pain. My URO then put me on Darvocet, which only made me throw up violently, but did take the edge off when I could keep it down. I went through this from about March to July, getting to the point where eating ANYTHING and drinking ANYTHING bothered my bladder. Since I had posted on the IC-Network about how good I felt on antibiotics, a patient who read my post private messaged me and told me that there was a more sensitive test that grew the urine longer and could possibly find bacteria, where the dipstick (nitrate) test could not. I Fed-Ex’ed my urine to United Medical labs and found out that I had Strep D, along with yeast (no wonder with all the antibiotics) and a little E-Coli, which is pretty normal. I found out that Strep D is hard to treat, and the reason it was not found before is that the usual lab test does now allow the culture to grow long enough or is not able to find some species of bacteria at all. Then, unfortunately, the Strep D was surrounded by calcium deposits, causing kidney stones, and once these stones were analyzed, they found the same Strep D bacteria. In order to rid myself of these infections and stones, I went on Cipro (thanks to Dr. D. for agreeing) for one month (because I always felt good on that), then Amoxicillin for 5 months, while also taking Diflucan and probiotics to kill/prevent yeast. And I also went into a dry sauna every day for 30 minutes while drinking 32 ounces of water at the time to flush the stones. Miraculously I was able to pass the stones with little pain (although they hurt like hell bouncing around in my already tender bladder). Then it took some time for my bladder to heal, as the cells regenerate very slowly.

Just in the past month, I have been able to eat and drink anything I want, although I will never drink another soda or something full of chemicals ever again. My whole family eats healthier, only organic milk, MSM supplements, etc. I have no preservatives in this house at all. That is a lifestyle change that we are all happy about, and I do not even want to “test” those things on my bladder. Yet, I enjoy my wine every night, one cup of coffee each morning, and spaghetti whenever I feel like it.

Well, now that you know how the IC was cured… the PN pain was a whole ‘nother story. I started having burning sensations in my vulvar area, when I sit, in March after my diagnosis, and I have gone through all the barbaric diagnostic tests and treatments for Pudendal Nerve Entrapment. I do have damage to both pudendal nerves, although I always felt it was caused by a muscular issue, not something else. After I got worse after all the CT-guided injections, I started taking Flexerell that helped some, because my pelvic floor muscles were in a complete knot. I went to a pelvic floor P.T. who was pretty clueless, but at least willing to listen to me and my theories and try something new. I found relief with rest and the use of an interferential device, which I only used for a couple months. I found some research from Dr. Moldwin, and my URO has his book, and we decided to try a low dose of valium (2mg 3 times a day) and that made so much of a difference and did not make me feel like a zombie as the Flexerell did. I got my life back, and my job, because I am a graphic designer and need my mind for creativity. Oh, and I also do yoga, mostly stretching the hamstrings and groin muscles, and pelvic opening exercises. (Dead bug, folding over, etc.)

Today, my PN burning pain is gone, but I sit on a geltec cushion when I am working (not necessary when lounging on the couch), my bladder pain is gone, my frequency is gone (I go about 3-7 times a day, which is normal), and can deal with the little spasms that I am left with at this time. I use a heated rice sock at bedtime to help the PF muscles relax even more, and every day I feel a tiny bit better. I can eat at restaurants, meet with clients, and pretty much do anything I want now. I even drove all the way to south Florida and back with no pain (although I sat on my geltec!) just this past month.

So it has been a journey, but one that I wish others would listen to and at least give a try. I do not think my method is a cure for everyone, but I strongly feel that if others would listen to me and actually believe my story, I can help them. I know I have helped others.

LEESA

Interstitial Cystitis – You Can Get Well

The Day It All Began

It was September 9, 2002. As with many of the people I have met who have been diagnosed with IC, I remember the exact date it all began. I was leaving the next day for vacation, and I started having symptoms like I was getting yet another bladder infection. I had a lifetime history of UTI’s (I was in my early 50’s when I was diagnosed with IC, but had my first UTI as a teenager), but I always just took the antibiotics and got better. So I called my urologist and got a prescription for Levaquin, and left on my vacation. The first round of Levaquin didn’t seem to help, so I called my urologist and got a second round of Levaquin. That didn’t seem to help either. The frequency, urgency, and discomfort kept getting worse. So I went to the local emergency room (in Indianapolis, Indiana). The doctor there did an exam and checked my urine. He said the urine was clear, but that could have been due to the two rounds of Levaquin. But he also said that, based on my symptoms, I might have a rather rare condition called interstitial cystitis and he recommended that I get back to Houston (my hometown) as soon as possible and see my urologist. That was the first time I had ever heard the term “interstitial cystitis.”

The Diagnosis

I cut my vacation short and returned to Houston. I was able to get in to see my urologist the day I arrived back in town. She gave me some additional prescriptions to help with the frequency and burning. I continued to try and work every day (I work in an office setting and have a fairly flexible schedule, but it was still tough!). In the meantime, I researched as much as I could about interstitial cystitis. I would sit in front of my computer and my stomach would just flip flop when I would read all the negative and depressing things written about IC. I hoped in my heart that I did not have IC, but I wanted to know one way or the other. So I asked my urologist to do a cystoscopy with hydrodistension to see what my bladder looked like. Although the “then” guidelines suggested this procedure not be performed until a patient had symptoms for 6 to 9 months, I did not want to wait that long for a diagnosis. So on October 27, 2002 I had a cystoscopy with hydrodistension. The procedure showed the glomerulations and bloody efflux suggestive of IC. I was glad to have the diagnosis; however, I must say that I can’t recall ever experiencing as much pain as I did following that procedure. The recovery room nurses tried to get me comfortable, but even IV morphine didn’t do the trick.

Finding the Right Doctor

The next step after the diagnosis was deciding on a treatment plan. I went to an IC specialist that I located through the ICA website. He wanted to treat me with DMSO. I told him that was not the first thing I wanted to try, and he told me that was his first line treatment and if I didn’t want to do DMSO treatments, I should go elsewhere. I went elsewhere.

I saw a couple more urologists that “advertised” specialization in IC, but didn’t find anyone more willing to work together with me than the urologist who had done the hydrodistension. An urologist’s knowledge of IC is obviously important, and the scope of his or her experience with IC patients is obviously important, but it is just as important that your doctor be someone who will listen to you and include you in decisions about your treatment. My urologist is a wonderful doctor – open-minded, empathetic, responsive, and informed. Together we reviewed the possible ways to treat my IC. I did a lot of internet research, went to all the IC websites I could find, read all the books about IC I could lay my hands on, and talked to many other IC patients on the phone.

Chinese Medicine

I decided that I wanted to take the most conservative approach first. Thus, I started out with a natural approach revolving around diet modifications and Chinese herbs. I treated with a doctor of Chinese medicine that is fairly well known within the IC community and who had quite a few other IC patients. The program consisted of a specially prepared combination of herbs to treat IC, along with a very stringent diet to eliminate the foods that irritate the bladder. I started the herbs and diet on Thanksgiving Day, 2002. During the first 4 weeks, I noticed a definite improvement. My frequency and urgency decreased and, very importantly, I was able to get a better night’s sleep (critical if you are still trying to work!). I recall that by Christmas 2002, I didn’t feel great, but I was able to enjoy the holidays. But then things started going downhill. Until that point, I had frequency and urgency but no pain. In January 2003, not only did the frequency and urgency become worse than they had been in the beginning, but I also started having a great deal of pelvic pain and – what for me was the worst symptom of all – constant burning in the vulvar and vaginal area (not just after urinating, but all the time!).

The Decision to go on Disability

The physical symptoms of my IC (frequency, urgency, pain, and burning) made it very difficult to work. The emotional trauma of what I was going through also made it very difficult to work. But the straw that broke the camel’s back was that I was only getting 1 to 2 hours of sleep a night. I started to take sleep aids (Tylenol PM, Ambien, Benadryl) to try and get more sleep. The pain became so bad that I started using Vicodin on a regular basis. Between the symptoms, the meds, and the lack of sleep, the quality of my work went downhill and it was almost impossible to focus or concentrate in the office. So I talked with my boss (I was very lucky to have a wonderful and understanding boss), and we agreed the best thing would be for me to go on short-term disability. Fortunately, my company’s short-term disability plan was quite generous so I was financially able to not work for a while. I went on disability towards the end of March 2003. As it turned out, I did not work for a little over a year, and I truly believe the ability to take time off and focus solely on getting well was a key factor in my recovery.

“Plan B”

I believed that the Chinese medicine may have helped with the symptoms, but would not ultimately allow me to fully recover, so I decided to move on to “Plan B.” My urologist and I just needed to figure out what “Plan B” was! I made a list of possible treatments, which included: (1) Chinese medicine; (2) Elmiron; (3) DMSO; and (4) long-term antibiotics. I identified the “pros” and “cons” associated with each of these treatments. I had already concluded that I didn’t think I could get completely well with Chinese medicine alone. I also had already decided that I would only try DMSO as a last resort. That left Elmiron and long-term antibiotics. I knew of patients who had had success with both of these alternatives. After three weeks of wavering back and forth between Elmiron and antibiotics, I decided to take the Elmiron. I got the prescription filled, and took my first dose of Elmiron one night in about the third week of March 2003. When I got up the next morning – call it woman’s intuition, gut feel, a message from God, whatever — I just felt in my heart that taking the Elmiron was not right for me and that I wanted to try long-term antibiotics.

Neurontin and Long-Term Antibiotics

Some patients like to try one drug at a time so they can figure out which drug is working for them. I took more of a shotgun approach, i.e., take numerous drugs and if one of them works, thank God for the relief and figure out later which one worked. I had read the books by Catherine Simone, and paid heed to her advice that the first step to recovery has to be to get out of pain. Fortunately, my doctor was willing to prescribe pain meds, and by taking Vicodin I was able to get my pain under control enough to at least think and reason. The majority of patients I had talked with who had gotten – and stayed – completely well were the ones who had taken long-term antibiotics. Since I believed that my problem was due to bacteria, that treatment plan made sense. In the meantime, I had also talked to numerous people whose symptoms had been helped by Neurontin (Lyrica was not yet on the market at that time). I decided to combine the Neurontin and antibiotics to try to get my symptoms under control.

I started the Neurontin the last week in March. It was a good thing I wasn’t working, because there was no way I could have worked the first 4 – 6 weeks I was taking the Neurontin. I was in “la la land”: I could not read, I could not watch TV, I could not pay bills or balance my checkbook, and there was no way I could drive! The Neurontin affected my mental capabilities, as well as my physical coordination and balance. However, after the first month or so, these side effects began to decrease and my body began to adapt. I stayed on about 1200 mg of Neurontin for about a year, and was able to function quite well at that dosage once my body acclimated to it. The Neurontin really seemed to help my symptoms, particularly the pain and burning.

About a week later, beginning on April 1, 2003, I started my long-term antibiotics. At first I took Augmentin, which is Amoxicillin with Clavulanate Potassium (the potassium salt of clavulanate acid). Although Augmentin had proved effective for some of the other IC patients I had spoken with, it can be harsh on some IC bladders due to the clavulanate acid (as many IC patients who have had the “potassium test” can vouch). My bladder was sensitive to the Augmentin, so after about 6 weeks I switched to Amoxicillin. I stayed on the Amoxicillin until December 1, 2003 (gradually titrating the dosage downward during October and November). The dosage I took for most of that time was 250 mg three times per day, but your doctor should advise on the dosage as this can depend on your weight and the nature of your condition.

The entire time I was on antibiotics, I did a number of things to make sure that I didn’t develop an uncontrollable problem with candida:

  1. I took prescription antifungals every day. With each dose of antibiotics I took an oral dose of Nystatin. I also took a dose of Diflucan between 1 or 2 times per week.
  2. I took lots of probiotics. Because the probiotics can render the antibiotics ineffective if taken too close together, I always took the probiotics no more than 1 hour (2 hours if possible) before or after taking the antibiotics.
  3. I really, really watched my diet. I stayed away from anything with yeast or sugar. Thus, I ate only yeast-free breads like spelt, kamut, or rice; ate only limited starches (rice, potatoes, pasta); no fruits; and nothing with sugar (including the “sugar” vegetables like beets, corn, carrots, etc.). I drank only water, and after some months added peppermint tea. Absolutely no alcohol!

In addition to the above three precautions, I got lots and lots of rest!

After about two months on the above regimen (that is, Neurontin, long-term antibiotics, antifungals, probiotics, Vicodin as needed for pain, some occasional other prescription and OTC meds as needed, a restricted diet, and lots of rest), I noticed a marked improvement. I started being able to go to movie matinees and actually watch most of the movie. I started sleeping better at night. After about three months, I was able to go out to dinner and enjoy a meal with friends. My symptoms gradually got better – on an “up-and-down” as opposed to a linear timeline – but definitely better! I started tapering down on the antibiotics, and was completely off by December 1, 2003. It had been about 15 months since my symptoms first started.

Tapering off the Meds

I had tapered off the antibiotics, along with the antifungals, over a period of approximately two months. I had stopped needing to use Vicodin for pain, and beginning around January 2004 I gradually tapered off the Neurontin. The last drug I came off was the antidepressant I had decided to take to help me get through the healing process. I had been on a very low dose of Lexapro (after trying numerous others), and the Lexapro really helped with my outlook and attitude, which I believe is important when recovering from any illness. I was completely off all medications by June 2004.

Returning to Work and to Life

As I was tapering off my meds, it took some months for my symptoms to be completely gone. I still had occasional symptoms – mostly frequency and urgency – for three or four months after discontinuing the antibiotics. But my symptoms gradually decreased until they were few and far between. I was still very careful what I ate and drank. In fact even now, three years later, I still stay away from anything acidic, citrus, or spicy, and anything made with tomato sauce.

In March 2004, after not working for almost a year, I decided I was ready (and needed) to go back to work. By that time there wasn’t a position available at the company where I had been working when I got sick, so I updated my resume and started to “pound the pavement.” I went to a job-related seminar one day and ran into an old boss. As it turned out, I was looking for a job, and he had an open position. Talk about the right place at the right time! So in April 2004 I returned to work.

Thank Yous and … I Feel So Blessed

I am [finally!!!] writing “My Story.” It is May 2007. It has been about three years since I recovered from my IC. Every night I pray with my mother, and we thank God for allowing me to be well again and to have my life back. In addition, I am so thankful to the team of medical professionals that worked with me, and to my family members and friends who supported me. And a very special “thank you” to the ICU of Texas (the support group in Houston) for providing me not only with a support network, but was also a valuable source of educational information regarding IC treatments and resources within the Houston medical community.

Closing Thoughts

I am an IC patient. I am not a doctor. I can only tell you in “My Story” what happened to me, and what treatments worked for me. That is not to say that what I did would be the best treatment plan for everyone or anyone else. There are IC treatments out there now that didn’t even exist 4-1/2 years ago when I was first diagnosed with IC. But I will offer some thoughts and suggestions to other IC patients (not to be construed as recommendations or advice), as follows:

  1. Get out of pain! If you are in pain and if you can’t sleep, then you can’t think. You need to be able to think clearly in order to make decisions about what you need to do to get well.
  2. Find the right doctor(s). You need to find a doctor that is knowledgeable about IC, that is open-minded, and that listens to what you say. You and your doctor should develop and monitor your treatment plan together. If you have more than one doctor, they need to be willing to talk to each other and work together.
  3. Be your own advocate. Since there are still many questions about IC, you owe it to yourself to learn as much about the condition as you can and to use this knowledge to help plot your course to recovery. Chances are you may learn things that your doctor(s) may not know!
  4. Maintain a journal. It is very helpful to maintain a journal, diary, or log of some sort to track your medications, your symptoms, and your progress. This will be helpful not only to you and your doctor during your recovery, but can also assist you in helping others in the future.
  5. Establish a support network. Whether it is family, friends, other IC patients, an “organized” support group, your physicians, or a combination thereof, establish a support network to help you get through this. It is a very tough condition to deal with, both physically and mentally. The people who really care about you may not understand the condition, but they do want to help you. Let them!
  6. Be patient. Dealing with IC is hard, especially when you want to or need to keep working, or when you have a family to care for, or when you don’t think you can stand the pain or go without sleep any more. However, my personal experience and that of most of the people I have talked with is that the recovery process takes time and has its “ups and downs.” Over time, the “ups” become more frequent than the “downs” until, eventually, you are well again!
  7. DON’T GIVE UP! When I was first diagnosed, I was told over and over again that very few people with IC ever get well; that they can hopefully just learn to manage their condition. Basically, I was told that the disease is chronic and that while you may go into remission, you are never cured. I have been symptom-free from IC for over 3 years now. Although it may be just a matter of semantics, I prefer to think of myself as healed, rather than as in remission. If my IC ever returns, I know that I’ve gotten well once before and I can do it again. So don’t ever give up hope … YOU CAN GET WELL!!!

MEG

If you’re anything like me, there is nothing more frustrating than a problem you can’t fix. Even more frustrating is when people you look up to and trust (like medical professionals) tell you that they can’t fix it either and that you are destined to deal with this problem for the rest of your life. This is why when I was diagnosed with “interstitial cystitis” (by definition, a chronic disease of the bladder with no known cause or cure), I was not only frustrated, I was furious! My story begins with stubborn and biased doctors who nearly drove me to insanity, and ends (or should I say continues) with supportive and open-minded individuals who have me on a path to wellness.

When I started college, I was adventurous, active, fit, and healthy. By the time I turned 27, I was weak, depressed, exhausted, and hopeless. This did not happen overnight, but instead it seemed like each day I got worse and worse with new and mysterious symptoms appearing. My bladder problems were the most irritating of the symptoms and caused me the most grief. I was experiencing frequency, urgency, fluid retention, dehydration, abdominal pain, burning, and spasms. At first I found myself in the bathroom every hour and as the problems progressed, I sometimes had to urinate every 10-15 minutes. In addition to this horrible and embarrassing problem, I experienced unbearable ear and neck pain, fatigue, headaches, irregular periods, skin irritation, and drastic weight changes. I knew there was something wrong with me but I didn’t know where to begin. How do you tell your doctor that your whole body feels awful?

It would be nearly impossible to recount the numerous doctors’ visits, blood tests, urine cultures, and other procedures that consumed all of my time and energy for the past few years. I’ll just describe some of the most frustrating instances, as I know many IC patients can relate. I went through a period where I literally thought I was crazy (sound familiar?). I was taking so many medications that I couldn’t differentiate the side effects from actual symptoms. I made dozens of trips to my primary care physician who was convinced I was making up my problems because my urine cultures continuously came back negative. During my final visit with him, he asked me if what I was experiencing could be bad menstrual cramps or possibly an emotional problem! I started seeing a therapist who told me I had an anxiety disorder which could be contributing to my problems and started me on antidepressants. I saw two different gynecologists, one who told me taking birth control would help and another who said birth control was the cause of my problems. I saw three different urologists. The first sent me out the door with a prescription for Detrol LA, a drug typically given to much older women for bladder control problems. The second told me to stop taking the Detrol because it would make my symptoms worse and then performed an ultrasound which was deemed “normal”, even though it revealed that my bladder could only hold 3 ounces of urine at a time. The third did a cystoscopy with hydrodistension and diagnosed me with IC, based on the ulceration of my bladder lining. Before I left the hospital, my urologist gave me a prescription for Elmiron and told me to start taking it right away because it was the only approved treatment for IC. She also told me that IC had no cure and taking this drug would only help to ease my pain. Some people say that they have a sense of relief when they are diagnosed with IC. I didn’t. To me, this was not good news. I went home in tears, angry, frustrated, and confused.

I immediately started researching IC and Elmiron. The scientist in me told me not to trust this drug without knowing every little detail about how it works. I was disturbed by the poor success rates of Elmiron and the fact that those who did experience relief on it had to take it for the rest of their lives. I also was skeptical of the “autoimmune” theory of IC. Why on earth would my body all of a sudden start attacking its own cells? Deep down, I felt that I must have an infection. I started reading posts on the IC network about antibiotic treatment. Martha, a friend on the ICN, began to send me messages about her theory regarding infections of the bladder that are not detected by normal urinalysis. With this in mind, I brought my urine to United Medical Laboratories in Virginia for a broth culture. Sure enough, I had a Klebsiella infection that was not detected by standard culture. Martha referred me to Ruth Kriz, a nurse practitioner who works with IC patients. On the day I saw Ruth I remember feeling hopeful for the first time in over a year.

During my consultation with Ruth, I felt like someone finally understood my frustration and believed me when I explained my symptoms. She offered ideas and options and treated me like an educated human being. No doctor had ever treated me this way. When I described my specific problems, Ruth told me she suspected I might have Lyme Disease and that a large portion of her patients with IC have been diagnosed with Lyme. I went home and did some research and my symptoms seemed to be consistent with Lyme. In addition, I had all of the risk factors. I grew up in wooded area of New England, spent a lot of time outdoors, and remembered having a deer tick embedded in my scalp for three days during college. In addition, bladder dysfunction and frequent urinary tract infections are common consequences of Lyme Disease! The pieces started fitting together. Ruth immediately had me send out a number of tests that would help in figuring out my problem. She then referred me to Dr. M,, a Lyme specialist. I felt as though I had accomplished more in one week with Ruth than I had in years of seeing other doctors.

Sure enough, my test results indicated that I had increased bowel inflammation due to Klebsiella in my intestine (aha… the source of my bladder infection!), and low CD57 levels (indicating an increased probability of Lyme). I saw Dr. M. and he confirmed the Lyme diagnosis using tests ordered through Igenex. However, I should emphasize that I tested negative for Lyme using a standard western blot test provided to me through my insurance company. Dr. M. told me that the Lyme disease was affecting my body’s ability to fight infection. I started taking Amoxicillin to treat my Klebsiella infection, supplements to reduce inflammation and boost my immune system (Vitamin D, Fish Oil, Vitamin C, probiotics), and a low dose of Minocycline for the Lyme. I gradually started to feel better. Throughout the process of treatment, I encountered problems with new species of bacteria in my bladder (after I cleared one infection, another would develop), drug resistance (which resulted in the need for intramuscular injections of antibiotics), and persistent infections (which required higher doses of antibiotics for longer periods of time). However, I felt confident knowing that I had a plan of attack. I continued with my routine of getting a broth culture, identifying the organism, treating it with the correct antibiotic, and following up a few weeks later. Having a solution for each problem helped me get through one hurdle at a time.

Just recently, for the first time in years, my broth culture from UML came back negative! I’m still taking antibiotics to ensure that the infection doesn’t return. I still have some pain and frequency but it is much less than it was before. I just recently started moving forward with my Lyme treatment. The road has been a bit bumpy (it varies day by day) but overall, I feel my health is improving greatly. Recovery is a slow (and sometimes expensive) process but believe me, having a plan is therapeutic in itself. It is a huge relief to have a solution for your problem and to be supported by people who understand and respect you. I encourage everyone with IC to consider an infectious cause. For some reason, the medical mainstream rejects this concept. It’s frustrating thinking about the thousands of IC patients out there who will never investigate this possibility and are missing out on successful treatment. I look back at myself just one year from now and can’t even imagine feeling that way again. I know that some IC patients feel that way every day for the rest of their lives and they don’t have to! For me, the future no longer looks gloomy. I have people to turn to when I feel sick. Thanks to Martha, Ruth, Dr. M., and my amazingly supportive boyfriend, I don’t feel crazy anymore. For the first time in years, I believe that some day I will be completely healthy.

NAN

I am a New York Sate Certified Nutritionist and medical researcher in Albany, NY. Approximately 20 years ago I had my first UTI. I was treated with Macrodantin, but it took 7 days for me to feel better. The treatment lasted 10 days. Within a short time I had symptoms again. I was treated with Macrodantin again with some relief, and then another recurrence followed that treatment. My life was altered from this point on.

When I had unbearable symptoms I’d send a urine specimen to the local lab, but my tests repeatedly came back negative despite my constant suffering. As a nutritionist in private practice I’d be forced to excuse myself to run to the bathroom during sessions with clients if the sessions lasted more than a half hour. With my negative urine tests my MDs refused to prescribe any more antibiotics. I was suffering unspeakably, and the despair was overwhelming. My life was controlled by my symptoms and my need to cope. I tried various pain-killers and antispasmodics, yet nothing worked. A well-regarded urologist did a cystoscopy and saw an inflammation exactly where my pain radiated from on my bladder lining. He didn’t know how to help me.

One day I urinated, left the bathroom, and was struck with a bladder pain so horrific I doubled over in agony, barely able to breathe. I gathered my strength and managed to get to my office – a hematology/oncology medical practice. Because the physician had a lab in the office, I gave a urine specimen to the technician in the desperate hope that I had a treatable bacterial infection. She looked at the specimen and told me she saw bacteria. We sent it to the medical lab to get confirmation. As usual the report came back negative. This was the first time I had someone tell me there were bacteria in my urine that were visible under magnification, and yet still received a negative lab report.

In the meantime, I had joined the fledgling ICA to learn as much as possible about how to help myself. I called their office and spoke to a volunteer who said I might benefit from contacting Ruth Kriz, RN. I called Ruth who was kind and helpful. She told me about Dr. Paul Fugazzotto in Rapid City, SD, a retired microbiologist who had made researching cystitis his life’s work.

I had heard of Dr. Fugazzotto, but had dismissed him as questionable. After all, I was working in the medical field and I knew that he appeared to be out of the mainstream. But, I had nothing to lose other than a small fee, and I was completely desperate. I sent him a urine specimen. He used a washing technique, and then cultured the urine in a broth culture in addition to using the usual agar plate. He let the culture incubate at least 3 days and often longer. He told me he had found Enterococcus, a gram positive bacterium that feasts on live organic matter and is usually considered nothing more than a contaminant by the mainstream labs.

Dr. F. explained that in some people the Enterococcus invades the bladder lining making it difficult for the antibiotics to reach it. He did a sensitivity test and found that Augmentin and Amoxicillin would be the appropriate antibiotics to use. He explained that antibiotics work by interfering with cellular metabolism, and if one takes too large a dose, the treatment damages the already fragile bladder cells which can cause more pain.

My gynecologist, compassionate and worried about me, prescribed the antibiotics Dr. F. recommended. Slowly over months I got better and better. Finally, after a long time, I stayed on a very low dose maintenance dose. I had only occasional flares, at which time I’d take a higher dose for 10 days and then go back to the low maintenance dose. This approach saved the declining quality of my life. I also want to mention that I also used cranberry extract capsules, and aloe vera capsules from Healthy Life Harvest which are specially designed for IC patients.

Due to his advanced age Dr. F. trained United Medical Lab in McLean, VA to use his culturing technique. (Ruth Kriz, an active advocate, had identified this lab as one that would be willing to do broth cultures.) They participate with medical insurance and will accept patient specimens without referrals from a doctor. All one has to do is to contact them and ask for instructions for sending a specimen for a broth culture. They are also on the web.

I have been at this a long time. I know that many researchers still have difficulty accepting a possible bacterial cause for IC. I wish they would think about the example of stomach ulcers. For too long everything from stress to food was blamed for this bacterial invasion of the stomach lining. Today we know that for most people a simple treatment with appropriate antibiotics will cure stomach ulcers. Many of us who have found relief from our chronic bladder symptoms see the similarity (an ulceration of the lining of these hollow organs with acidic, liquid contents) as predictive of the future.

I had been controlling my symptoms well until I began going through peri-menopause and then menopause. I could no longer control my bladder discomfort. With the wonderful help of a sympathetic infectious disease specialist, I was forced to use narrow spectrum antibiotics at full strength, repeatedly. This was a dangerous and unacceptable long-term strategy. And, I was miserable.

My misery propelled me to do constant research on the internet. I found some articles by and about Canadian researcher, Gregor Reid, PhD, an authority on the subject of probiotics. Dr. Reid had patented some strains of bacteria which preferentially line the bladder and urethra, making it more difficult for pathogens to cause infection. He licensed his patent to a respected mega company in Denmark, Chr Hansen. Hansen produced capsules with billions of cells of these beneficial bacteria and was test-marketing them in Malaysia and Hong Kong.

I e-mailed Dr. Reid, telling him of my declining condition. He was compassionate and told me that he would let me know when I would be able to purchase his product in this country. Just over a year ago, he alerted me that Jarrow Formulas was producing and selling the probiotic capsules in this country as FemDophilus. He told me to take one capsule with breakfast, one with dinner, and insert one into my vagina nightly. He cautioned me that the purpose of these capsules is not to prevent or treat bladder infections, but rather to increase the length of time between recurrences of these infections.

Dr. Reid said that if I needed to take antibiotics, I should take them at least 2 hours away from the time I took the FemD, so as not to destroy these precious beneficial bacteria. He also said that these bacteria are damaged by heat. He encouraged me to keep the unopened jars in the refrigerator, but also said that as long as they are at room temperature, one can travel with them safely.

I followed Dr. Reid’s advice carefully. I suffered while I weaned myself from the antibiotics, but I was determined to get off them completely to give the probiotics a fair chance. After about two weeks on this regimen, I began to feel better. Just as Dr. Reid said, it takes three months for the colony to establish itself in the intestines. At three months, I was virtually symptom free.

My bladder will never be normal, and I have had flares of symptoms since beginning the FemD.

Usually, if I insert 2 capsules nightly for a few days [instead of one], I can make the symptoms go away. My urine cultures from United have sometimes been positive for Enterococcus. But, I only treat if I have symptoms that interfere with my sleep or activities. Rarely, I have been forced to go on narrow spectrum antibiotics [Amoxicillin or Bactrim], and then have to take them 2 hours away from the FemD, and continue to insert one capsule vaginally, nightly.

It is reassuring to know that there are things we can do to help improve the quality of our daily lives. With support of my friend and colleague, Martha, [patient advocate], the ground breaking research of Dr. Reid, and the assistance of skilled [though stymied] physicians, I have made great strides toward a more comfortable life. I hope you can too.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: