IC Success Story: Nystatin Users
Bill's Interstitial Cystitis Story on how he accidentally healed his bladder with nystatin at http://www.icsuccessonline.com/Bill.htm has been pretty famous and very exciting for me personally! I'm gathering stories of others IC patients who have healed their Interstitial Cystitis by trying out Nyastin after they too, found Bill's accidental cure. I will continue to update this post and add more IC Nyastin healing stories if I see more on the internet.
** Note: I will be going on a Nyastin program soon, to see if it will cure my chronic UTI too **
Bill's Interstitial Cystitis Story
His story can be seen here.
But in case the site ever goes down or his story disappears off the net, I have copied and pasted it here too:
"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, [ I deleted his mailing address -- I did some research and found that his house was already sold, which means he is no longer at that address. He may no longer be alive, because he would be in his late 90s in 2019. I found an obiturary thing written on the internet about his wife who passed away recently in her late 90's so I don't think Bill Clary is around anymore ], 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"
Christine's Story
In November 2015 Christine, a long-time sufferer of IC/urethral syndrome, posted a potential cure on the Comments page on UrethralSyndrome.ca. In brief, she used a drug called Nystatin which kills candida yeast in the intestines. This gave her complete relief. Here is an excerpt from her original letter :
christine
November 1, 2015 at 1:15 am
Greetings all, I am a 65 year old woman who has been suffering with IC [note from Theresa, IC = interstitial cystitis] for 16 years with all my pain located in the urethra. The symptoms were frequent urination acut pain when passing urine or having a bowel movement. Pretty much a feeling of pain there all the time but peeing was like being sliced with razor blades . I had tried years of antibiotics to no avail. I recently read an article on an site called Bills Story http://www.icsuccessonline.com/Bill.htm [note from Theresa – this links to what appears to be a genuine personal account, no ads] in which he details how he inadvertently cured himself of IC using a course of Nystatin (for Systemic Candida) . A few months back my doctor suggested it could be IC and so I googled like crazy and found numerous support groups and from that started to change my diet ( which helped immensley) but was somewhat limiting and basically was just preventing aggravating the problem . I also tried pure aloe vera juice and that also seemed to help . I bought Prelief that did not help. After reading Bills story http://www.icsuccessonline.com/Bill.htm I printed it out and took to my doctor and she reluctantly gave me a script for 20 dayof Nystatin taking 1 x 3 times per day. 10 days later I felt it had totally gone. I have eaten a few tomatoes ( I thought I would test it out) which previously would have caused immense pain and had no reaction. Same with mayo, coffee and a few other previously foods not recommended by the IC diet. I probably should have waited longer (Bill suggests this) before adding foods previously known to cause a flare up but I was too excited at being pain free . I just wanted to share this as to me it is just miraculous and I am contemplating whether something that simple could have caused a condition that was so debilitating and had lasted for so long. In my case it was like I was peeing glass shards , I would need to pee at least 20 times a day or more. If I bent over it killed me I felt like something was sticking into my urethra. Sex was out of the question and relationship ended One thing I did notice historically was that I had had many time thrush infections especially after a course of antibiotics. Also Tinea (althletes foot) but never put two and two together. My feeling is although the condition can be managed with Aloe vera and diet it may be able to be cured , as in Bills case and in what now seems to be mine. I returned the doctor last week and ask for a script for a few months as Bill suggests just to be sure. She was amazed and now wants to conduct a study !! I wish everyone well in their quest to recover from this ghastly painful condition and will update my progress in a month or so.
Theresa's Story
After reading that excerpt, Theresa, the creator of that website, tried the same thing and wrote her story here:
March 29, 2014 (then she updated it on Jan 31, 2018)
By theresa
Urethral syndrome has many different causes. I first started this website when I discovered, through my own research, that acid urine (pH of 4 to 6) was causing me pain. I was able to eliminate the pain by taking mineral supplements which make the urine more alkaline (full details are below in the section HOW TO STOP THE PAIN). This worked for me and for eight years I was virtually pain-free. Since that time many people have written in to my COMMENTS page and some of them have uncovered other causes and cures which I will summarise here. I tried Nystatin myself – the syrup. I took Nystatin oral, 100000 U/ML PMS – 1 teaspoon (5 ml) three times daily for 21 days. From that I got a 100% cure, with no side effects at all. Nystatin is also available in pill form but I do not know the dosage. I continued to have symptoms occasionally while taking the Nystatin, even after 2 weeks of taking it, so I thought it was not working, but I continued taking it until the end, and never had a symptom again. Even when my urine is acid, I have no pain. So my urethral syndrome was caused by a yeast or fungal infection in the urethra, and acid urine caused pain to the inflamed tissue in the same way that putting lemon juice on cut or scraped skin causes pain. Therefore I recommend the use of an anti-fungal drug, such as Nystatin, for an extended period of time to cure the underlying cause of burning pain in the urethra. The minerals and alkaline diet can be used to control the pain but it is not a cure.
Britney's Story
This was written by Britney Ciardullo on this Facebook post, but in case one day it disappears off Facebook, I have copied and pasted her here:
"I requested to join this group just to tell my story of how I cured my IC in hopes that it will help someone else end their suffering with this!
Mine started after using an antibiotic (doxyclycine in my case) I began having really intense bladder pain two days after starting this antibiotic. I am used to getting UTIs as I have been on antibiotcs for them almost monthly since I began having sex. Felt exactly like a UTI although I knew it was unlikely because a) I wasn’t currently sexually active and b) I was currently on an antibiotic. I stopped the doxy at day 3 hoping the pain would go away but it didn’t. I went to my PCP for a urine culture which was negative. I had intense bladder pain for 5-6 months. In that time I went to a handful of doctors who only offered me more urine cultures (had about 9 of them) which were all negative and I had a urologist offer me meds for incontinence which I refused. I did though have an ultrasound on my bladder (came back showing sludgelike material n bladder) and a cystoscopy and was diagnosed with IC I started doing research online and saw candida as a possible cause for IC. I mentioned this to every doctor I went to and was pretty much told I was crazy and it is not likely to be candida at all as it is “not a real thing” so I had to turn to natural remedies…caprylic acid, oregano oil, candida cleanses, probiotics, just to name a few! I tried all the natural meds and if anything it made my bladder pain worse. Forgot to mention at this time I was also dealing with other symptoms like brain fog, fatigue and stomach issues. All started with the doxy. Finally I went to an infectious disease doctor and begged him to try to treat me with antifungals as I saw a few people online say liquid nystatin helped them. The doctor did not prescribe me nystatin though and instead put me on 4 weeks of difflucan. Within about 3 days on it my brain fog and fatigue disappeared but the intense bladder pain was still there after 2 weeks of being on difflucan I went to my PCP and told him the whole story and about how the difflucan was able to fix half of me but the bladder pain was still there and that I read that liquid (not the pills) nystatin worked for some people bc it coats the bladder I asked that he please let me test it out and he offered me a 4 week supply 4 times a day. Within the next day my bladder symptoms eased up a lot! Within the week the pain was 98 percent gone. The nystatin cured my “incurable” IC now, after finishing the nystatin I still felt a tiny bit of pain which was understandable bc my bladder was irritated for 6 months so even with infection gone I understand why it would take time to heal but after a few weeks I was 100 percent pain free and have been now for 2 years. PLEASE look into this as a possibility it does not show up on urine tests that its candida but it 100 percent was the cause of mine. I do think though I needed the combination of both the difflucan and nystatin bc the candida was not only in my bladder but also systemic and nystatin is said to only work in gut and bladder but not for the systemic infection so id suggest trying to get meds for both. It wont be easy though as doctors are so closedminded but maybe if you print out my story and show them it has worked for others they might be more willing to try it out. Good luck to you all I truly hope my story helps you."
To read more interstitial cystitis cures by other patients on my blog, visit my category "Success Stories".
** Note: I will be going on a Nyastin program soon, to see if it will cure my chronic UTI too **
Bill's Interstitial Cystitis Story
His story can be seen here.
But in case the site ever goes down or his story disappears off the net, I have copied and pasted it here too:
"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, [ I deleted his mailing address -- I did some research and found that his house was already sold, which means he is no longer at that address. He may no longer be alive, because he would be in his late 90s in 2019. I found an obiturary thing written on the internet about his wife who passed away recently in her late 90's so I don't think Bill Clary is around anymore ], 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"
Christine's Story
In November 2015 Christine, a long-time sufferer of IC/urethral syndrome, posted a potential cure on the Comments page on UrethralSyndrome.ca. In brief, she used a drug called Nystatin which kills candida yeast in the intestines. This gave her complete relief. Here is an excerpt from her original letter :
christine
November 1, 2015 at 1:15 am
Greetings all, I am a 65 year old woman who has been suffering with IC [note from Theresa, IC = interstitial cystitis] for 16 years with all my pain located in the urethra. The symptoms were frequent urination acut pain when passing urine or having a bowel movement. Pretty much a feeling of pain there all the time but peeing was like being sliced with razor blades . I had tried years of antibiotics to no avail. I recently read an article on an site called Bills Story http://www.icsuccessonline.com/Bill.htm [note from Theresa – this links to what appears to be a genuine personal account, no ads] in which he details how he inadvertently cured himself of IC using a course of Nystatin (for Systemic Candida) . A few months back my doctor suggested it could be IC and so I googled like crazy and found numerous support groups and from that started to change my diet ( which helped immensley) but was somewhat limiting and basically was just preventing aggravating the problem . I also tried pure aloe vera juice and that also seemed to help . I bought Prelief that did not help. After reading Bills story http://www.icsuccessonline.com/Bill.htm I printed it out and took to my doctor and she reluctantly gave me a script for 20 dayof Nystatin taking 1 x 3 times per day. 10 days later I felt it had totally gone. I have eaten a few tomatoes ( I thought I would test it out) which previously would have caused immense pain and had no reaction. Same with mayo, coffee and a few other previously foods not recommended by the IC diet. I probably should have waited longer (Bill suggests this) before adding foods previously known to cause a flare up but I was too excited at being pain free . I just wanted to share this as to me it is just miraculous and I am contemplating whether something that simple could have caused a condition that was so debilitating and had lasted for so long. In my case it was like I was peeing glass shards , I would need to pee at least 20 times a day or more. If I bent over it killed me I felt like something was sticking into my urethra. Sex was out of the question and relationship ended One thing I did notice historically was that I had had many time thrush infections especially after a course of antibiotics. Also Tinea (althletes foot) but never put two and two together. My feeling is although the condition can be managed with Aloe vera and diet it may be able to be cured , as in Bills case and in what now seems to be mine. I returned the doctor last week and ask for a script for a few months as Bill suggests just to be sure. She was amazed and now wants to conduct a study !! I wish everyone well in their quest to recover from this ghastly painful condition and will update my progress in a month or so.
Theresa's Story
After reading that excerpt, Theresa, the creator of that website, tried the same thing and wrote her story here:
March 29, 2014 (then she updated it on Jan 31, 2018)
By theresa
Urethral syndrome has many different causes. I first started this website when I discovered, through my own research, that acid urine (pH of 4 to 6) was causing me pain. I was able to eliminate the pain by taking mineral supplements which make the urine more alkaline (full details are below in the section HOW TO STOP THE PAIN). This worked for me and for eight years I was virtually pain-free. Since that time many people have written in to my COMMENTS page and some of them have uncovered other causes and cures which I will summarise here. I tried Nystatin myself – the syrup. I took Nystatin oral, 100000 U/ML PMS – 1 teaspoon (5 ml) three times daily for 21 days. From that I got a 100% cure, with no side effects at all. Nystatin is also available in pill form but I do not know the dosage. I continued to have symptoms occasionally while taking the Nystatin, even after 2 weeks of taking it, so I thought it was not working, but I continued taking it until the end, and never had a symptom again. Even when my urine is acid, I have no pain. So my urethral syndrome was caused by a yeast or fungal infection in the urethra, and acid urine caused pain to the inflamed tissue in the same way that putting lemon juice on cut or scraped skin causes pain. Therefore I recommend the use of an anti-fungal drug, such as Nystatin, for an extended period of time to cure the underlying cause of burning pain in the urethra. The minerals and alkaline diet can be used to control the pain but it is not a cure.
Britney's Story
This was written by Britney Ciardullo on this Facebook post, but in case one day it disappears off Facebook, I have copied and pasted her here:
"I requested to join this group just to tell my story of how I cured my IC in hopes that it will help someone else end their suffering with this!
Mine started after using an antibiotic (doxyclycine in my case) I began having really intense bladder pain two days after starting this antibiotic. I am used to getting UTIs as I have been on antibiotcs for them almost monthly since I began having sex. Felt exactly like a UTI although I knew it was unlikely because a) I wasn’t currently sexually active and b) I was currently on an antibiotic. I stopped the doxy at day 3 hoping the pain would go away but it didn’t. I went to my PCP for a urine culture which was negative. I had intense bladder pain for 5-6 months. In that time I went to a handful of doctors who only offered me more urine cultures (had about 9 of them) which were all negative and I had a urologist offer me meds for incontinence which I refused. I did though have an ultrasound on my bladder (came back showing sludgelike material n bladder) and a cystoscopy and was diagnosed with IC I started doing research online and saw candida as a possible cause for IC. I mentioned this to every doctor I went to and was pretty much told I was crazy and it is not likely to be candida at all as it is “not a real thing” so I had to turn to natural remedies…caprylic acid, oregano oil, candida cleanses, probiotics, just to name a few! I tried all the natural meds and if anything it made my bladder pain worse. Forgot to mention at this time I was also dealing with other symptoms like brain fog, fatigue and stomach issues. All started with the doxy. Finally I went to an infectious disease doctor and begged him to try to treat me with antifungals as I saw a few people online say liquid nystatin helped them. The doctor did not prescribe me nystatin though and instead put me on 4 weeks of difflucan. Within about 3 days on it my brain fog and fatigue disappeared but the intense bladder pain was still there after 2 weeks of being on difflucan I went to my PCP and told him the whole story and about how the difflucan was able to fix half of me but the bladder pain was still there and that I read that liquid (not the pills) nystatin worked for some people bc it coats the bladder I asked that he please let me test it out and he offered me a 4 week supply 4 times a day. Within the next day my bladder symptoms eased up a lot! Within the week the pain was 98 percent gone. The nystatin cured my “incurable” IC now, after finishing the nystatin I still felt a tiny bit of pain which was understandable bc my bladder was irritated for 6 months so even with infection gone I understand why it would take time to heal but after a few weeks I was 100 percent pain free and have been now for 2 years. PLEASE look into this as a possibility it does not show up on urine tests that its candida but it 100 percent was the cause of mine. I do think though I needed the combination of both the difflucan and nystatin bc the candida was not only in my bladder but also systemic and nystatin is said to only work in gut and bladder but not for the systemic infection so id suggest trying to get meds for both. It wont be easy though as doctors are so closedminded but maybe if you print out my story and show them it has worked for others they might be more willing to try it out. Good luck to you all I truly hope my story helps you."
To read more interstitial cystitis cures by other patients on my blog, visit my category "Success Stories".