Interstitial Cystitis

DISCLAIMER
This is a paper of my experience with Interstitial Cystitis only and is not intended for use in diagnosis, treatment or any other medical application. This paper does not endorse any of the medications, products or treatments mentioned or discussed. Any medication or treatment you consider should be discussed with and approved by your personal physician.

I CURED my Interstitial Cystitis.
I am a 79 year old male in excellent health except for over 6 1/2 years of suffering from Interstitial Cystitis.
April 1, 1993 I went to my family doctor for a terrible bladder pain and burning when I would urinate. He put me on antibiotics (Doxycycline) for 14 days for Prostatitis. I went back on June 29, 1993, Jan. 24, 1994, April 16, 1994, and each time he put me on Doxycycline for 14 days for prostatitis.
On July 7, 1994 I went to a urologist expecting prostate surgery. He sent me to the hospital for a Cystoscope, x-rays and other tests. He continued to treat me for Prostatitis, which I did not have, with Sulfa, which I was allergic to. I was on antibiotics for 196 days in one year.
I went to two more urologists, who continued to treat me for prostate problems and I continued to get a lot worse. At this point I decided to be my own doctor.
On October 30, 1995 I went to the Mayo Clinic in Rochester, MN. With another Cystoscope, x-rays and tests, I was diagnosed with Interstitial Cystitis. The Doctor told me he had good news and bad news for me. He said I. C. would not go into cancer but there was no cure for I. C.
I would not accept the fact that there was no cure for I. C. I think that every organ in my body will heal itself with the proper medication, diet, lifestyle and time (with few exceptions). I would not take any of the medications to help me tolerate Interstitial Cystitis or hide the pain. I was only interested in the cause and the cure for Interstitial Cystitis.
For the next two years after I was diagnosed with Interstitial Cystitis I took a number of DMSO treatments and other medications, trying to cure my I. C. I thought I got some relief 8 or 10 days after I had a DMSO treatment that seemed to help for 2 or 3 weeks, and I would start into a relapse again.
I have kept a voiding diary of the time of day and volume of my trips to the bathroom since Nov. 1995. During my last relapse, Aug. 12, 1999, I was making 12-14 trips to the bathroom during the day with 1½-2 ounces of volume and 4-5 trips at night with 2-3 ounces of volume. I go to the bathroom NOW 5 times during the day with 5-8 ounces of volume and 1 trip at night with 7-10 ounces of volume and with no pain. I should probably drink more water. My prostate may be part of my problem at night.
I do delay my trips to the bathroom as long as I can with the hopes of stretching my bladder, but it did not help until I got rid of the pain and urgency.
It hurts me to talk to and read about so many young people with I. C. I worry most about women 20-50 years old who are trying to work, raise a family, keep house, hold a marriage together and have accepted the fact that they are going to have to live with I. C. for the rest of their lives.
I have not used the word cure for (YOU) because I do not know how you would define cure.
I consider myself cured, but if you define cure as a program that will cure every case of Interstitial Cystitis including all the related problems, it will be impossible to find. I think I may be very near a typical Interstitial Cystitis patient without the complications.
If a cure is defined as a major contribution that helps a lot of I. C. patients and narrows the focus of the search for a cure, maybe we are getting closer. If we can cure the typical I. C. patient, then we can start on the Allergies, Fibromyalgia, Vulvodynia, Endometriosis, Chronic Fatigue Syndrome, Headaches, Depression, Lack of Sleep and others. If I. C. causes or aggravates any of these problems, I would hope that any relief for I. C. would help relieve some of these other problems.
I have taken, or thrown away, between $2,000 and $3,000 worth of pills and medicine and had $7,275 worth of DMSO treatments in the doctor's office, plus two expensive hospital trips for tests.
On Dec. 14, 1997 I was in the middle of a bad relapse. I went to my urologist for a DMSO treatment. She thought I might have a slight prostate infection and she gave me a prescription for (an Antibiotic) Doxycycline, 2 a day for 14 days.
I had talked to a nice lady from Farmville, VA and she suggested that I should be on an Anti-Yeast and Acidophilus program while I was on antibiotics. I asked my doctor for a prescription for Nystatin 500,000 u tablets. She prescribed enough for 2 a day for 15 days and I went into remission for 4 to 6 weeks. I could not put it all together, but it was my first hope for a cure for my Interstitial Cystitis.
Since my Doctors did not have many answers to my problem, they were very good about giving me prescriptions I asked for.
In early 1998 I started on a long term Antibiotics, Nystatin and Acidophilus treatment program, but I had so much reaction to some of the Antibiotics, I would go on and off the program every month or two for a year and a half. My routine would be to get a DMSO treatment, go on Antibiotics and Nystatin for 14 days, and I would go into remission for a few weeks and then start into a relapse. I stayed on the Acidophilus all the time. I have been in extended remissions and relapses several times since then. I learned a little bit from each one, but I could not put it all together for a cure.
If my experience sounds too simple, I am happy about that. For me it was cheap, I did not have to consider surgery or any radical treatment and my only side affects were a few days of flu like symptoms when I first started the Nystatin.
I will try to explain step by step the events that led up to the success I have had treating my Interstitial Cystitis.
Through some very unusual circumstances and luck, I accidentally found the relief for (MY) I. C. that I had been looking for since I was diagnosed with Interstitial Cystitis.
On Aug. 15, 1999, I was in the middle of a BAD relapse or flare, so I started my usual routine. Hoping for some relief, I called my urologist and got an appointment for a DMSO treatment for 3:45 p. m. Aug. 18th, 1999.
Since I thought I had some infection I started on the same routine that I had used a number of times before. I started on 2 Doxycycline and 2 Nystatin a day. I had done this before with no problems, but this time I broke out with the hives.
I quit the Doxycycline and Nystatin for about a week. I still have no idea if it was the combination that caused the hives or something else. I have never had the hives more than 2 or 3 times in my life.
Since I thought I might have some infection, FOR EVERY LOGICAL REASON I can think of, I should have started with an Antibiotic for 14 days and followed it with the Anti-Yeast treatment for 14 days.
Also, for whatever reason I DO NOT KNOW, I started on the NYSTATIN ONLY, 2 a day for 14 days. I noticed an unusual improvement on the 12th and 14th days after I started the treatment. On the 15th day and again FOR NO GOOD REASON, I continued to take the Nystatin ONLY, 1 tablet a day. My big improvement started Oct. 2, or 30 days after I started the Anti-Yeast program. I am still on Nystatin, Jan. 20, 2000, 1 a day, and will stay on 1 or 2 a day until I feel sure my bladder is completely healed. I wonder if I should have stayed on 2 Nystatin a day for 30 or 60 days. Some people take higher doses, but your doctor should make that decision.
I will try to explain why you may want to discuss this idea with your doctor and why it may have been overlooked for so long.
If you do not have a vaginal yeast infection, the biggest problem you may have is to convince your Doctor that you have an Intestinal or Bladder-Yeast infection. The next big problem may be for you to convince yourself that you may have a yeast or fungus problem. I had no obvious sign whatever of an intestinal or bladder yeast infection, and if there is a test for intestinal or bladder yeast infection, l do not know about it. If you had a vaginal yeast infection, I would guess your Doctor might prescribe a short term Anti-Yeast treatment. In a few days you would be better and that would be the end of the treatment.
If you can convince your Doctor that you have an intestinal or bladder fungus or yeast infection, I think it might be normal for him or her to put you on a short-term anti-yeast program. In a few days you might feel better and that would be the end of the treatment, BUT THAT WOULD NOT BE LONG ENOUGH TO LET YOUR BLADDER HEAL. I wish I could tell you how long it will take, but I feel I am getting close on Jan. 20, 2000.
I asked my pharmacist how long I could take 2 Nystatin, 500,000 u a day on a prolonged basis and she could see no problem, for several months, but be sure you ask your doctor or your pharmacist. If you have a problem getting a prescription for Nystatin for extended use, check with your pharmacist, or there is a lot of information on the internet on Nystatin for prolonged use. Nystatin also comes in powder and liquid forms.
I have a book, "The Yeast Connection and the Woman" by Dr. William G. Crook that I refer to often. He explains Candida Albicans or Fungus-Yeast infections and a lot of the ways they can affect your health. There is one chapter on Interstitial Cystitis. He has an excellent explanation of the die off reaction that causes you to feel like you have some flu symptoms the first few days after you start the Anti-Yeast treatment. He discusses Endometriosis, Vulvodynia, Chronic Fatigue Syndrome, Fibromyalgia, Headaches, Depression and Yeast Infections that might give you hope for some form of relief. This book is available in most libraries.
I know several people who consider their I. C. cured, but all that I know of have been on some form of long term Antibiotic, Anti-Yeast, and Acidophilus program, and some for as long as 2 or 3 years.
After my experience with the YEAST ONLY TREATMENT, I wonder if I was in a vicious circle. Were the Antibiotics I was taking creating a need for the Anti-Yeast treatment and delaying my hopes for a cure?
If anyone can work out a plan with their doctor and enjoy the success I have had, I will be very happy for them.
If I sound enthusiastic, it is because it is a new experience for me to be able to go to a wedding or a funeral without having to wear a diaper. It is also nice to be able to ride in a car for 2 or 3 hours without continually looking for a rest room or rest area. I do not have to keep a urinal in the car anymore.
Diet seems to be a problem for each individual to work out, but a low sugar diet is usually recommended for yeast problems.
I was on Nystatin, 1 a day until May 7, 2000. I have not been on medication of any kind for I. C. since May 7, 2000.
If it is not possible for you to get a DMSO treatment, and if your Doctor refuses to prescribe Nystatin or some other Anti-Yeast medication, you may want to go to your health food store and work out the best Anti-Yeast program you can. I tried GRAPEFRUIT SEED EXTRACT and MSM for a short time.
To analyze my I. C. as simple as I can, I think I took so many antibiotics that I destroyed all the good bacteria in my system and developed a serious yeast or fungus in my bladder. When I got rid of the yeast, and let my bladder heal, I got rid of the I. C. I will remind you that I did not have any obvious sign of any kind that I had a yeast infection.
My only suggestion is that when you start feeling better, don't start drinking coffee or eating the things that you know irritates your bladder. Wait until your bladder heals.

IF YOU TRY THIS PROGRAM, I WISH YOU ALL THE SUCCESS I HAVE ENJOYED.

There is a questionnaire included with this paper, and if you decide to try this program, it is VERY IMPORTANT to me that you return the questionnaire. I also hope you can enclose a donation, CHECK OR MONEY ORDER, and mail it to Bill Clary, 2605 Lynnwood Dr., Columbia, MO 65203, so I can continue to work toward finding the CAUSE of I. C. and hopefully the CURE. I know how to work for the cause and cure, but it can be expensive.

If I can get enough financial support and favorable questionnaires back, I hope to get more research money spent on a CURE for I. C. We have an excellent University Teaching and Research Hospital here in Columbia. I would hope a clinical trial could be a first step toward a CURE.

It seems to me that there has been too much spent on controlling the pain and 
tolerating the other problems associated with I. C. and not enough on the CURE.

Nothing would please me more than to be able to make a contribution toward 
getting some relief for a lot of people with this terrible health problem.

Good Luck and Good Health

Bill Clary

QUESTIONNAIRE
When you print this, use the one-page questionnaire here. 


Were you on an extended use of Antibiotics before you were diagnosed
with Interstitial Cystitis? _______________________________
Date you were diagnosed with I. C.__________________________
Date Started the Anti-Yeast Program_________________________
Type of Anti-Yeast Medication_____________________________
Dosage_______________________________________________
Side Effects, if any?_____________________________________
____________________________________________________
Any improvement in I. C. related problems? ___________________
_____________________________________________________
Other Medication or Supplements_____________________________
_____________________________________________________
Other Supplements forYeast____________________________________
_________________________________________________________
Diet_____________________________________________________
_________________________________________________________
PROGRESS 30 Days Excellent Good Fair No Help
Comments________________________________________________
_________________________________________________________
_________________________________________________________
PROGRESS 60 Days Excellent Good Fair No Help
Comments________________________________________________
________________________________________________________
________________________________________________________ 

It will not be possible for me to answer your letters or e-mails 
individually, but if I can summarize the information on the questionnaire in 
a paper that I think is useful, I will make it available to you. Send me 
your E-mail address if you like,

OTHER COMMENTS: 

Bill's story and IC questionnaire can also be seen at www.interstitialcystitis.net