cure for interstitial cystitis at Autoimmune Diseases Forum, topic 1646897

cure for interstitial cystitis mendedsoon 14 y 14,504

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Hi
Has everybody with IC seen the post below?

st a new topic .The story of my cure of IC
by Peggy K on Fri May 08, 2009 8:55 pm

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 that gave me first hope that there are people out there who got cured. I found out about Dr. Fugazzotto . 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 . 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.

Read my messges on this board Read my messges anywhere

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- Re: cure for interstitial cystitis lindanube 14 y 14,166
  
  Lugol’s Iodine Free S&H
  J.Crow’s® Lugol’s Iodine Solution. Restore lost reserves.
  
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  lindanube
  
  This is a reply to # 1,646,897
  Well, all I did to get rid of a painfull bladder was to take the tea and coffe out. Now, everytime I have a cup of tea the pain is back.
  
  Read my messges on this board Read my messges anywhere
  - Re: cure for interstitial cystitis Bonnie1971 9 y 5,919
    
    Bonnie1971
    
    This is a reply to # 1,646,995
    
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    I am an IC suffer.. I have been going thru this for 2 years.. I went to my gyno who diagnosed me with vaginal dryness and gave me a cream and sent me on my way.. Well this never worked. I was getting uti symptoms about every two months.. Between my gyno and physician some were positive some were negative.. I would get an Antibiotic and feel great .. 4 days later everything is back again.. I then took a trip to the ER. Which they found a stone.. The stone passed.. I went to a urologist and went for a cystosopy.. Which came back IC.. I was put on a strict diet and an estrogen cream insert.. Mind you my estrogen level is fine.. In one week they told me they want be to do vaginal therapy.. I went to a kidney specialist who told me I have cystitis too and there are many things to try.. I read about the long term Antibiotic and told each doctor that when I take an Antibiotic I feel great.. But no one wants to give me a long term antibiotic.. My family doctor now wants to treat me for depression.. I'm not depressed I am just out of my mind with this disease.. I noticed if I use a vaginal moisturizer insert it takes the edge off.. My mom gave me a few Xanax for my nerves... The lowest dose.. Which I read a lot of people use this for IC.. So I talked to my family doctor and she will not perscribe it.. Saying its habit forming... Which I understand... But what no one understands is when I take one low dose of Xanax at 500 am and use a little vagisil every morning. I have no symptoms and I feel great.. I explained this to my kidney specialist And he said he can not perscribe it and talk to my family doctor and explain how it makes you feel good.. So I did and she still won't perscribe it.. She told me use Tylenol and now wants me to try cymbalta. Well I did and I got extreme headaches. So then it was lexapro. Ok tried and felt like I was jumping out of my skin.. Now it's Ativan and I can't even function. I'm so tired.. But thank you for my mom she gave me a few Xanax to try and I am In heaven.. How can I explain to my doctor I'm not addicted nor going to get addicted. I don't want the high I just to feel normal again.. My bank account is going empty with paying for all these prescriptions that just sit here not being used.. And by all means I'm not paying 3000 for vaginal therapy.. Even my kidney dr. Said that's a joke.. My kidney specialist has been working great with me and feels my pain and wishes he can help but he Can not write the perscription... I know what I need to feel alive again but my doctor will not help me.. Any answers on how to get help.. Or why when I take an antibiotic I feel great.. I feel a long term antibiotic would work but can't get that either.. IC SUFFERER NEEDS HELP.. Any suggestions..
    
    Read my messges on this board Read my messges anywhere
    
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