Date: September 14, 1999
Interstitial Cystitis Network - Chat Log (www.ic-network.com)
Topic: Antibiotics, Yeast, Pelvic Floor - A comprehensive treatment approach
Speaker: B.J. Reid Czarapata, CRNP, CUNP, President, Urology Wellness Center
<icnmgrjill> Greetings everyone and welcome to the ICN support chat for September 14, 1999. Our speaker tonight is B.J. Reid Czarapata, CRNP, CUNP - B.J. is the founder and President of the Urology Wellness Center. She is certified as an Adult Nurse Practitioner and is also certified as a Urology Nurse Practitioner and has been in Urology since 1986. She was part of the Division of Urology at Georgetown University Medical Center in Washington, DC prior to starting the Urology Wellness Center in 1992. She is also Past President of the Society of Urologic Nurses and Associates, a member of the Medical Advisory Board of the National Vulvodynia Association, a member of the American Urogynecological Association, the Nurse Practitioner Association of Maryland, and the Nurse Practitioner Association of DC. She has written many articles for professional journals, and speaks locally, nationally, and internationally.
As the founder of our web site, I've spoken with hundreds if not thousands of IC patients around the country and for the past several years and one name has come up consistently on the East Coast as a compassionate IC advocate. It is our privilege to welcome BJ, not only for her tremendous experience treating IC patients, but for her outlook and perspective on treating IC as a whole body phenomenon. Welcome BJ!
<bjcapazRN> Before we get started talking about IC, I would like to mention or remind you all that September is Prostate Cancer Awareness Month. If you are male, you should have your prostate exam and a PSA test. If you are female, be sure that your male loved ones have done so! Most urologists and many hospitals have free prostate screenings this month!
<bjcapazRN> I'll be happy to answer any questions you have but I do have some material that I would like to present first. One of the things that I see in my patients is confusion about bladder diseases and names. Most of you have been diagnosed with either urethral syndrome or urethritis or prostatitis (for men) and/or IC. I thought I'd take a moment and just go over some of the bladder diseases so that we can all function from the same baseline.
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Interstitial Cystitis (IC): People with interstitial cystitis experience significant urgency and frequency of urination. They continuously feel as if they have to urinate and only urinate a small amount at a time. There is usually pain in the lower abdomen or the urethra. Pain is also frequently associated with intercourse.
The Urology Wellness Center specializes in alternative treatments for this condition. We have found that the pain may be caused by infection with fastidious organisms (those which do not show up on standard cultures). The pain may also be caused by muscle spasms and trigger points that refer pain to the abdomen and bladder.
Allergies, food substances, and the effects of yeast infections can also cause the problems. Our studies show that most of our patients experience a major lessening of pain and pressure, urinary frequency, and depression, and an increase in level of functioning and quality of life. We use bladder training, bowel training, special diet, treatment of trigger points and muscle spasms, biofeedback for pelvic floor muscle rehabilitation, special antibiotics, and treatments for yeast, etc.
Urinary Urgency and Frequency (Overactive Bladder) is getting a lot of media attention. You've probably seen the ads on TV for Detrol. This condition is similar to Interstitial Cystitis, however, it has not been diagnosed by a physician. It is treated in similar ways. Antibiotics are used for infection and treatment of fastidious organisms. Bladder training, bowel training, special diet, special exercises, medications, and treatment of muscle spasms and trigger points are also major parts of the treatment. I consider overactive bladder a media term because there is no code for it in the insurance books.
Urethral Syndrome is irritation in the. In men, it may feel like prostate pain. In women, it is pain in the urethra. Urethral syndrome hasn't been proved to be caused by an infection. Symptoms may include frequency, urgency and pain in the urethral area rather than the lower abdomen. I believe it is caused by a spasm in the pelvic floor muscle.
Non-Specific Urethritis is considered an irritation of the urethra caused by bacteria that can't be cultured and it's not gonorrhea or chlamydia. NSU is frequently a urea plasma bacteria, which don't culture well. Most doctors treat non-specific or non-gonococcal urethritis with antibiotics.
Our Philosophy of Treatment for Interstitial Cystitis is to teach the patient to heal herself or himself with guidance. It includes prescribing medications if necessary, and some treatments such as biofeedback, treatment of trigger points with ice and stretch and massage, but mostly it involves techniques and treatments that the patient does herself/himself, such as diet and fluid management, special exercises, and special treatments. This empowers the patient and allows her/him to have control of the condition. Our patients find that this decreases their fear (which is a pain magnifier) and allows them to control relapses without spiraling down into the depths that they had previously reached.
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<icnmgrjill> So, BJ... what you're saying then is that you treat IC as a whole body disease and that you have a specific focus on bacterial treatment and pelvic floor. As you know, bacterial treatment has been somewhat controversial. Can you share with us your thoughts on how IC could be bacterial, given the fact that so many cultures are negative.
<bjcapazRN> I truly believe in the bacterial theory as a contributor to the IC condition. I do not particularly believe that IC is a Urinary Tract Infection (UTI). The cultures are negative because not all bacteria grow well on an agar culture medium. (Agar is a solid growth medium used for some culturing techniques). It stands to reason that bacteria that grow in urine may prefer a fluid medium. So, we have taken from Dr. Fugazzottos work, where he grows bacteria in a soy broth medium.
Dr. Fugazzotto found that two main bacteria are found in interstitial cystitis patients. These were an Enterococcus and a Micrococcus. He found that when these people were treated with culture specific antibiotics that they got better. I wish to point out that these bacteria are gram positive bacteria. Most physicians will treat a UTI with antibiotics for gram negative bacteria, such as Bactrim
Dr. F had done a significant amount of work. He has published some of it. We have an independent lab in the metropolitan Washington DC area that uses Dr. F's methods. We have gotten the same results that Dr. F has gotten. Most of the patients have a Micrococcus or Enterococcus infection. When we treat these with specific antibiotics, our patients are getting better.
I do wish to add that if we only treat with antibiotics patients get better but not all the way better and they frequently relapse when the antibiotics are stopped. However, if we treat with antibiotics in conjunction with the other treatments that we use, such as diet, biofeedback, pelvic floor rehab, trigger points, exercises and treatment of yeast, etc., then the people seem to get 90 to 95% better.
<icnmgrjill> One of the controversies of antibiotic treatment is the development of resistant infection and/or the dangers of using antibiotics over the long term.
<bjcapazRN> When I use the antibiotics, I always use a yeast medication with it. An oral yeast medication. My preference is for Nystatin oral powder or oral tablets. Over the 7 years I've been in private practice and the approx. 400 patients I have treated, I have seen no resistances and only maybe 5-8 patients with some complications.
<icnmgrjill> Are your patients able to stop antibiotics after a period of time?
<bjcapazRN> Most of the patients are able to stop antibiotics. I usually taper them off with a specific routine. I don't stop all at once. I might add that some of the original patients that I had, who have had numerous courses of DMSO treatment, seemed to have more trouble getting off antibiotics. I attribute this to the fact that DMSO is a mobilizer which pulls things into tissue. I hypothesize that it pulls bacteria into tissues. (Let me just say that I do not believe in DMSO).
<icnmgrjill> Certainly, some patients have reported what feels like consistent and persistent yeast infections. I myself have had two in the last several months. Can you share with us your thoughts on a yeast connection, if any?
<bjcapazRN> I think that yeast is a definite component in the IC syndrome. #1. Practically all women have yeast. It is a normal inhabitant of the intestinal tract. If any woman has ever had a yeast infection, then we know that she has yeast, it just may be under control. Antibiotics increase yeast. Most IC patients have had numerous antibiotics thrown at them in the course of trying to get treatment. So, I automatically assume there is yeast.
I would like to mention that the yeast does not have to be in the vagina. It can be anywhere in the body. It produces a toxin which is a bladder irritant. The yeast can be the ear canals, the sinuses, the intestines or even on the skin. So whether or not a vaginal culture shows yeast, the Nystatin seems to help.
<icnmgrjill> What types of symptoms would a patient with a yeast problem experience?
<bjcapazRN> Urgency, frequency and urethral burning. Maybe fatigue, abdominal bloating and gas. Does that sound familiar? Also, there is significant redness in the mucous membranes around the vagina and the anus.
<icnmgrjill> Let's go ahead and take your questions from the floor. Carolyn says that she had read an article on patients who had had antibiotic therapy and that afterwards, they still had the bacteria. Could it be that antibiotics are working because of an anti-inflammatory effect rather than as an antibiotic?
<bjcapazRN> Its true that the bacteria is there. I hypothesize that the bacteria is an opportunistic infection and that it invades the bladder wall because the bladder wall is not healthy. I believe that the antibiotics control the bacteria as we use the other methods to make the bladder and pelvic area more healthy, at which point the patients own defenses can control the bacteria. So, the patients do get better. I do not try for a complete kill of the bacteria by using super strong antibiotic because I think that can make people sick in other ways.
<icnmgrjill> Bob and N Lori ask "all the antibiotics give me a lot of abdominal pain and gas. Could this be just related to yeast or could it be a reaction to the drug?
<bjcapazRN> My experience in people who have had "allergies" to many antibiotics is that this may be prevented by giving the Nystatin tablets for yeast. If, when a person is taking antibiotics, and the yeast overgrows, the intestinal walls become inflamed. When they are inflamed, they allow openings that allow large molecules of substances to go through, including foods and antibiotics. This then allows those large molecules to set up an allergic reaction. If you prevent the inflammation you can, in many cases, prevent the allergic reaction.
Now this does not refer to those people who develop rashes or difficulty breathing. So many of my patients have been able to tolerate antibiotics when, before, they have not been able to tolerate any.
<icnmgrjill> Is there anything a patient can do from a self help perspective to help minimize opportunistic infections.
<bjcapazRN> To start with, they may be interested in getting some acidophilous from a local health food store and taking that. It will increase their good bacteria and decrease the yeast. Second, they should follow a good IC diet and eliminate all bladder irritants. They should restrict but not eliminate refined carbohydrates to decrease yeast, such as: breads, sugars, and fruits. For yeast, it's all fruits. But for IC patients, I limit them to pears or blueberries, frequently just after dinner.
People should take good fat. Many people are in an ultra low diet and are living with very little fat. But, good fats are good for us and these includes olive oil and the omega three fatty acids, which are usually in fish oil capsules and in flax seed oil and a lot of deep cold water fish.
It is important to prevent constipation and it is also important to drink enough water. Many of my patients, when they come to me, have restricted their water. But when they fill out their symptoms surveys on each visit, one of the things they say that have helped them the most is drinking the water. I try to have most people drink 1/2 cup an hour.. from the time they wake up until dinner. And then another 1/4 cup at bedtime. (People with serious heart conditions should check with their medical care provider before getting on that program. They, in particular, should only increase their fluids very gradually.)
<icnmgrjill> Jack would like to know what you think of taking antibiotics routinely, at night?
<bjcapazRN> That is called suppressive antibiotics and it is a legitimate treatment for chronic UTI's. I do this frequently. It is part of my tapering off treatment from the full dose of antibiotics to just taking it at night. I still believe that an anti yeast preparation should be taken along with it and I have my patients take Nystatin for a whole month after I stop their antibiotics. Now, I might add that cranberry juice is a significant bladder irritant, as well as Vitamin C.
<icnmgrjill> Do you have any specific suggestions for preventing constipation?
<bjcapazRN> I have people start the day with 8 ounces of hot water and then every day they take 1 tablespoon of "special recipe." Special recipe is a mixture of 1 cup crushed 100% bran flakes, and 1 1/2 cups of canned pears in it's own juice, blended. You mix the pears with the bran and it makes a glop and you take a tablespoon a day for the first week, two tablespoons a day for the second week. Increase by one tablespoon each week until you reach three or until you get adequate relief. Maximum is five. This is a take off on the prune applesauce and bran mixture given in many nursing homes. My patients refer to this as "power pudding."
<icnmgrjill> HenryK would like to know if you think that IC and fibromyalgia correlate?
<bjcapazRN> I know that they correlate in many cases but I think I will use this as an opportunity to expound on my pet theory. I have found that most IC symptoms are related to muscle spasms and trigger points in the body and since fibromyalgia is a disease of trigger points, it easily correlates.
I want to state that it is my personal conviction that the cause of IC lies outside of the bladder. What has led me to this conviction is the fact that when pyridium, which is a urinary analgesic, is given to a patient, it doesn't completely relieve the pain in the bladder. If the pain was really starting inside the bladder, an analgesic would deaden the pain. When ditropan or detrol or other anticholinergic medications are given, they may not eliminate bladder spasms from the IC patient. Finally, if the bladder is removed, the pain can still be there.
So, going on this premise, I have examined my patients backs, hips, pelvis and legs and have discovered muscular skeletal asymmetries, spasms and trigger points which, when treated, relieve the spasms and the pain and the pressure in the bladder. Some of these muscle spasms and trigger points interfere with the circulation and the nerve supply to the bladder. It is this interference to the circulation which interferes with the delivery of oxygen and nutrients to the bladder, and nerve stimulation. That, I believe, decreases the health of the bladder possibly producing holes in the GAG layer and allowing the entrance of the opportunistic bacteria.
<icnmgrjill> zwooba wants to know if you recommend using routine cultures to determine flares.
<bjcapazRN> In my practice, I usually avoid taking cultures after the first couple of broth cultures because usually the enteroccoccus or micrococcus is always there. If the person has a significant flare that is not relieved by going back on the diet etc., I will get a repeat regular agar culture to look for a different bacteria and then treat accordingly.
<icnmgrjill> Zwooba would also like to know if she can send urine for cultures to the lab you mentioned.
<bjcapazRN> Yes. It is United Medical Labs, in McLean VA. I don't have the phone number, so you'll have to call information to get it.
<icnmgrjill> HenryK wants to know if it is possible to have prostate pain with IC even if the prostate is given a clean bill of health?
<bjcapazRN> Many people believe that non bacteral prostatitis is really IC. My experience is that the same bacteria exist and that the same muscle spasms and trigger points exist in men with prostate pain. Some of the people in the metro DC area have done semen cultures for the men and found the same bacteria.
When I have a man in my office, I usually do what is called a first glance urine. The first tablespoon of urine - not midstream - and I do a prostatitis massage before getting the spasm. That I believe will yield the same bacteria as a semen culture.
<icnmgrjill> He also wants to know what some of the commonly used antibiotics are?
<bjcapazRN> Many people use Cipro because it penetrates the prostate. However, we have not found Cipro to be really effective against enterococcus. Augmentin may be a better choice. I sometimes use macrodantin. Now, I might mention that Dr. F has shown that Macrodantin at it's usual dosages (50 mgs 4 times a day) actually encourages the growth of enterococcus, whereas Macrodantin at 100mgs will suppress the bacteria. Now I only give macrodantin 100mgs 3 times a day, rather than 4 times a day, because it has had some serious side effects in rare people. Definitely talk with your medical care provider about this.
<icnmgrjill> Is tetracycline one?
<bjcapazRN> Tetracycline is the main antibiotic for chlamydia. I don't use it for IC often. I only would consider using it if the initial episode of IC was associated with a sexual encounter.
<icnmgrjill> Kathleen would like to know if you have seen any correlation between scoliosis and IC?
<bjcapazRN> Definitely, because the asymmetries of the muscle, which precipitate muscle spasms which effect the internal organs. A good evaluation by a physical therapist, possibly an orthopedist or a chiropractor, specific therapeutic exercises to relieve the spasms and possibly evaluation by a podiatrist who believes in balancing the body. If necessary, orthotics to change the weight bearing in your feet. These may be helpful.
The particular muscles of interest that I believe are fully involved in IC, are the rectus abdominus muscles of the abdomen, possibly the quaddrati, the piriformis, the levator ani group and the internal adductors. If a person was going to go to a PT for evaluation, these are the particular muscles she should check, as well as posture and gait.
<icnmgrjill> Helen wants to know if there is an average length of treatment for antibiotics?
<bjcapazRN> I usually use the antibiotics for two or three months and then begin to taper off when the symptoms resolve. Then I may keep the suppression going for once a day at bed time for another 4 or 5 months, but only if they get a return of symptoms after the first try of eliminating antibiotics. Most people are off of antibiotics within four months, at least in my hands.
<icnmgrjill> Claire says.. "Can I just try Nystatin. I have an appointment with my uro next week and can ask for a prescription?"
<bjcapazRN> While I think that Nystatin is definitely necessary for most people, I wish to caution the participants that most physicians do not believe in systemic yeast. They will frequently be unwilling to treat it and, if they do decide to treat yeast, they will want to give a very strong medication such as diflucan or nizoral for a very short course.
I usually believe a longer course is better and Nystatin is considered a safer medication and is approved for pregnant women (ICN Editors Note: For those who are pregnant, please review this carefully with your medical care provider.) The other two stronger medications can effect the liver and cannot be given for a longer course. I sometimes use them when necessary but only on a very structured routine.
<icnmgrjill> Bev wants to know if your clinic does anything for couples who experience pain during or after sex?
<bjcapazRN> Well, since I'm on the medical advisory board for the National Vulvodynia Assn, I treat numerous women who have pain with sex. I wish to point out that the main culprit in the IC syndrome is that the piriformus muscle contracts and possibly goes into spasm when the knees are apart. By treating muscle spasms and trigger points in the muscle, we are able to relieve a lot of the pain. I also treat my patients stretching exercises for this muscle and have them do this immediately after intercourse.
The exercise that I normally have my patients do can be done by lying on ones back, with knees bent comfortably, feet flat and shoulder length apart on the floor or mattress. There is a slight pelvic tilt so the person cannot get their hand underneath the arch of their back.
You then let one knee fall into the midline. The foot will turn, the hip will come a little bit off of the surface. The back should not arch. Take the other leg and put the calf of that leg over the knee of the first leg, letting the weight of both legs push the first leg towards the surface. It should not reach the surface of the floor. The back should not arch. There should be a stretch felt in the outer hip of the first leg and then they would do the other leg.
My patients do this with both legs twice a day, first thing in the morning, last thing at night and right after sex. If there is pain with this, they need to see an expert who can find out what they are doing wrong. It should not hurt.
Before we close, let me tell you about the rectus abdominus muscle. These are the muscles which go from your rib cage to the pubic bone. When a person puts their hand on their area above the pubic bone and presses in and gets the urge to go to the bathroom, they probably are not pressing on their bladder. The bladder must have more than 300ccs in it to get above the pubic bone. Of the person has urinated and their bladder is empty and they get the urge to go to the bathroom at some point, this is a trigger point. If treated, many of the symptoms of IC may go away, particularly the subrapubic pain.
<icnmgrjill> Some patients certainly experience exceptional abdominal tenderness, in some cases up to their belly button and if they press ... it seems like everything hurts. Could this relate to the same muscle group or something similar?
<bjcapazRN> I would believe so. We have a packet of information that includes articles and the diet that we can send to patients for $15.00. For directions on how to order it, they can write to me through our web site. http://mh106.infi.net/~bjczar/. Or, you can email me at email@example.com
<icnmgrjill> Folks, we could go all night. BJ has been very wonderful answering our many questions but it is past her bedtime. We'll take one last question. Carol L wants to know if you have any suggestions on how to reduce the aggravated clitoral orgasmic sensations/pain that some patients experience?
<bjcapazRN> I believe that the clitoral pain is caused by irritation of the pudendal nerve. This nerve goes through the same bony opening that the piriformus goes through. If the muscle is spasming, and therefore fatter, it presses on this nerve. So, this should be relieved by piriformus exercises.
A second possibility is that it is also being irritated by the pelvic floor muscles and learning how to relax those muscles may be useful.
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