Interstitial Cystitis

[Peggy K]

I have been free of Interstitial cystitis for over a year. I went through hell as many of you here. I prayed to God if I get cured, I will share my story with others to help them. This is my story.

One day I woke up with severe bladder pain, back pain, urgency and frequency of urination. At night, I woke up sometimes eight times to go to the bathroom. Pain was so severe that I went to the ER a few times. Every time after I urinated, my bladder went to spasms and severe pains. My urine culture didn't show any bacteria. I had two cystoscopies and one laparoscopy that showed an inflamed bladder. I went from doctor to doctor, my diagnosis was Interstitial cystitis Doctors explained to me that it is an autoimmune disease and as sorry as they feel for me, there is no cure and I have to live with it for the rest of my life. I tried every possible natural "cure" on market, I was given Elmiron, 12 bladder installations, I tired acupuncture and nothing worked. I used a TENS machine to help my severe low back pain (tail bone area). This was the only thing that helped my pain, although I knew this wasn't a cure, just pain relief. I kept searching the internet. I ordered many products that should help to heal my bladder. Unfortunately nothing helped. I ate a very strict diet for the IC and even that didn't make a difference. I went to a naturopath and was put on sugar free diet and vitamins that made me ill. Life became hell for me. I was depressed and felt desperate. I tried yoga to relax my tight pelvic floor muscles, I sat on a tennis ball, because I read that that should release the trigger points over the pelvic floor. The pains were getting worse and I had to stop exercising, any exercise made my pains worse.

My turning point was when I started googling about successful stories of people who got cured. I found Jannine's story <http://www.icsuccessonline.com/jeannine's_story.htm> that gave me first hope that there are people out there who got cured. I found out about Dr. Fugazzotto <http://www.moonstar.com/~crc/drf.html>. He is a retired Microbiologist who successfully treated IC with antibiotics. I called him, he is in a nursing home now. He was very encouraging and told me not to take Elmiron or installations since they would just coat the bacteria and I needed to break the biofilm, not to coat it. I found a link on his site to Ruth Kriz, the Nurse practitioner, who specializes in IC treatment. She herself suffered IC for 18 years and got cured with antibiotics. I was willing to try anything at this time. Ruth was very helpful and very encouraging. She told me to send my urine to the Virginia lab <http://www.unitedmedicallab.com/>. She explained to me that the Agar plate culture doesn't show many times the gram negative bacteria, such as Enterrococus, that was found as a main pathogen in IC. The Viriginia lab cultures the urine for a longer time, time needed to show the gram negative bacteria. I went to my family doctor at the same time to have my 13th urine culture done by the standard Agar plate and it was negative. My Broth culture showed an Enteroccus at the same time. I was put on Amoxicillin and Augmentin. I understood that the bacteria in IC are in the bladder walls and are embodied in the biofilm. Biofilm is a substance that bacteria release and it consists of iron and calcium and it is hard to break. People who suffer bladder infections frequently take usually a 10 day course of the antibiotics which is not enough to kill hardy bacteria like Enterrococus. The symptoms might be gone, but the bacteria are coating themselves in the biofilm and penetrate the bladder walls. I wrote to two Microbiologists specializing in biofilm and was told that long term anitibiotics use (at least 6 months could break the biofilm, but there are not in vivo studies how to break the biofilm). In the hospitals they are using EDTA to break the biofilm on instruments to avoid contamination. Every 6 weeks I would send my culture to the Virginia lab to see. After about three moths, another biofilm broke, this time with E-Coli, then another with Spreptococcus D, I had about five layers of biofilm coated bacteria. Ruth assured me that this is normal and a good sign that the antibiotics work. The lab always found for me which bacteria would be sentitive to which antibiotics. The only one that wasn't senitive to the Amoxicillin was E-coli, I forgot which antibiotic I had to take, but it was only supplied in the injection form. Being on long term antibiotics, I had to address the yeast issue. I was taking about 8 "Udo's choice" yeast probiotics a day. I had to make sure I took them about two hours before or after the antibiotics, so they wouldn't clash. To sleep better at night and to calm my nerves, I took .25mg of Xanax. My bladder pains started to get better after about one month of taking the antibiotics. My frequency and urgency went to a minimum. The only thing remaining was my bladder, back pain and itching in vagina due to yeast. I called Ruth every time I got my results from the lab and she was very encouraging. She had me tested for all kinds of immunity disorders, every test came fine, except of vitamin D. I was very lucky I found a new family doctor who was willing to prescribe to me the long term antibiotics. Many doctors don't believe in it, because their medical books teach them that the IC is a non bacterial inflammation of the bladder. Sometimes we had to laugh together when we did test my urine, my result from Virginia lab showed a very heavy growth of bacteria and hers on Agar was negative. Sometimes my yeast flared up and I got very bad vaginal itching. I treated it with Fluconazole and Monistat. I drank lots of water to flush the bacteria. Ruth had me tested for Bartonella, similar to Lyme desease. She is finding connection of this bacteria to IC. I was one of few IC sufferers who tested negative. To start healing my bladder and to get rid of yeast I used Wobenzym. I took it many months after I stopped the antibiotics. I found that my bladder healed very quickly after the bacteria was gone. The last bacteria the lab found was the Streptococcus D, that kept appearing, but at that time I had no symptoms and Ruth told me that I am probably a carrier and I don't have to continue the antibiotics. I was a total of 9 months on the antibiotics. I don't require any special diet at all for my IC and my bladder is normal and pains are gone. Any time I mention my story to medical doctors, they look at me like a miracle. They say, there is no cure for IC and encourage me to write about it. I am surprised that this type of cure is not well known. I found that lot sites sell lots of products and give people false hopes.

I waited one year before I wrote this post. I was scared that the IC would come back if I write it any sooner. I am fulfilling my promise to God to tell others if I get cured. I was desperate, twisted in pain and thought that my life is over, because nobody can live on with such a pain. I want to give hope to others who feel desperate. I want to thank all the people that helped me, especially to Ruth Kriz.

[angelhawk]

Peggy, Thank You! Iam takeing this letter of yours to my DR. Iam so gratefull for you being there. Iam seeing a womens MD . she has said I will need to see a urologyest? so that will be my next step. hopefully when she reads your letter she will understand more and I can get some real help!. she is a very understanding DR. thank you so much and my GOD bless you more for helping others. keep in thouch. Patti

[Peggy K]

Patti, it makes me happy if my story will help you. There are many of us who got cured. Unfortunately the medical community doesn't believe that the IC is a bacterial infection. The Broth culture cultivates bacteria on a wet surface. Gram positive bacteria needs longer cultivation then usually 2 days of Agar. The Broth culture takes about 5 days minimum. Dr. Fugazzotto told me that up to early 60's labs were all doing the Broth culture and then they stopped doing it, they got lazy.

I just realized that in my previous story I made a mistake...Enteroccoccus is a gram positive bacteria, not negative. Sometimes it takes more then two days for it to show up on the culture. Because it takes more then that, it doesn't mean the bacteria is not there.

Don't give up, be persistent, let them investigate everything. I hope you will find a great doctor that will help you. Let me know how you are doing.

[Peggy K]

Sorry, I made a typo. I should have addressed you as Angelhawk.

[Day]

Thank you for posting your story. My heath insurance plan wouldn't pay for all the needed testing to try this out. Does anyone have any other ways to break down this biofilm? I have suffered over 18 years with this and have tried practically everything. I have to be within 5 minutes of a bathroom. Maybe 15 on a good day. Nights are much the same. I try to wait an hour hoping maybe I will fall asleep. Many nights I am up all night long.

[Peggy K]

Day, I live in Canada and had to pay for everything out of my pocket, including sending my urine to the US. I have no extended health care plan here and our socialist health care doesn't pay for drugs. I was in so much pain and discomfort that I was ready to mortgage my house(I didn't need to) if necessary to get a help. What is money for if you can't enjoy your life and only suffer. You need to have your urine tested for bacteria and appropriate antibiotics. I took Amoxycillin and Clavulin and it didn't break my bank, if I had to do it again and had no money, I would borrow it. There is nothing else that I found can break the human biofilm. There are no studies about it. I would also recommend calling Ruth Kriz(her phone number is on Dr Fugazzotto's web site), you need somebody to guide you through it. The Virginia lab accepts the insurance if you are covered.

[tracey89]

Hi Peggy,can you email me at home [moderator note: e-mail address has been removed] -instead of logging in and out. I am 38 and suffering 5 months,Mom of 2little boys. Spoke with R.Krizs office and need to convince husband of her helping. Would love to talk. Thanks

[Peggy K]

Hi Tracey, sorry, your e-mail address didn't get through. I don't know why would you need to convince your husband about getting you help? It is your body and you need help and Ruth hopefully can help you. She was the only person who helped me to be fully cured. My husband would do anything to find somebody or something that would cure me. Usually husbands suffer as well, because it is hard to have sex when everything there hurts. Maybe you should check if Ruth's consultations are covered by your insurance. I know the Virginia lab tests are. At the very least, everything is tax deductible as a medical expense.

[tracey89]

Thanks for response. I am working on him...I just have days where pain is gone, usually like a week a month ,so its strange,why would it leave and come back? Also want to rule out ovarian cancer also because I have abdominal pain that wont go away an lost 20 lbs. I get cofused as to what id going on.

[Peggy K]

Tracey, you need to have a complex examination, that includes of anything that is in your pelvis and abdomen, since you are losing weight, I would ask even for a colonoscopy or GI testing, abdominal and pelvic CT/MRI or Ultrasound and complete blood work and I would send my urine to the Virginia lab for the Broth culture. I hope you have a good family doctor who can send you for an assessment of everything and follow it thoroughly. Good luck and let me know how are you doing.