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"IC Soulution" cure??

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  • ICNDonna
    It's not unusual for someone who is newly diagnosed to try desperately to find something --- anything --- that will promise a real cure. Unfortunately, that's why the "quacks" find so many of us to be willing to spend our money on any and every thing someone recommends. I know I did at first.

    But I found that what works best for me is to stay on my IC diet and work with my physician on treatment options. If someone recommends a "cure" to me, my response is now "Show me the evidence." Testimonials just don't convince me --- I could write 100 testimonials in a day and that wouldn't make them evidence.

    One thing I would like to stress is that most people with IC do find treatment options that allow us to feel good most of the time. It can take a while and some effort on our part (such as keeping a food diary), but it's well worth it over the long haul.

    Sending warm encouraging hugs,

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  • Danica
    question for bdelaune re nerve stim.

    Hi ~
    You mentioned a nerve stimulator for preventing urgency. I would so be interested in that because my family and I are avid hikers and before the IC we had plans to hike Half Dome 17 miles in Yosemite. But there is no way I would last with out bathroom breaks along the way. It just devastates me that IC has robbed me of so many plearsures in life. Hiking, running, expresso, wine, sexual relations with my husband... I feel robbed. But I am not going to let it take everthing away and as a matter of fact I am going to fight for everything back.
    Anyway, if wearing a stimulator can prevent the urgency/frequency then I want it.
    Thanks for your reply.

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  • Danica
    absolutely interesting theory

    Green the fish~ You are quite an articulate teenager. You should go into the medical research field. They could use a mind such as yours...
    I am a pre nursing student at the age of 40. Got married and had kids before finishing my degree so over the last 10 years just been nipping away at the degree one class a semester. I don't know how now the IC will affect my ability to continue school just because the flares I have experienced are so debilitating. My dream has always been to be a nurse and now I have terrible doubts that I would be able to make it through the program. Only time will tell...
    I think you may be on to something in regards to their being a genetic factor in IC. My mom has suffered through UTIs all her life but doesn't seem to exibit IC symptoms. She gets better through antibiotics where as I haven't since Dec 13, 06. I have had bladder infections since I was 2 and a half, my mom says. I got them terribly worse when I became sexually active with my then fiance. He died unexpectedly from cancer very fast. My bladder infections seemed to disapate after his death. When I met my current husband I resumed with UTIs one or two a year. They always went away with antibiotics..ususally cypro until this last episode 12-13-06. And now I am told I have IC.

    Today I am starting on Cystoprotek and will also continue with elavil that I just started yesterday. I have also been taking pottasium citrate the URO dr perscribed for alkanizing my urine. We shall see. I how I die for a wonderful cup of expresso. Coffee and and fine glass of wine I miss very much. But I do not dare because instant flare awaits if I do.
    Take care

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  • L. Thomas
    You know if it works don't knock it. I does sound like the culture is very persnickerdy. If it is caused by STD and it is that sensitive what would keep you from getting it again. Now I don't mean STD, I mean IC. What if it is my hyuband that infected me...I just don't know about this therory.

    My urogyn thinks IC is an underlying condition that you are born with and it becomes active after bladder tramua. That fits me prefectly.

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  • green_the_fish
    True, IC could have different causes in different people. One theory out there is that IC is not really one disease, but several different diseases currently under the umbrella term "interstitial cystitis". Some women here have said that their IC started after years of UTIs, while some never had a UTI prior to IC. Some developed IC as children, while others developed it after mid-age. Symptoms range from very mild to debilitating. It could be possible, then, that there are different causes of IC in different people. What bugs me, though, is that Kilmartin seems to express the view that all cases of IC are sexually transmitted. I don't like that. But, if someone were to take the stance that some cases of IC are the result of an STD, then I would consider that a possibility.

    Personally, I have my own theory on what causes IC. Now, I don't have any medical training at all... in fact, I'm still a teenager in high school, so you probably shouldn't take me too seriously. My theory is probably wrong, but it's my own opinion. I posted it a while back, and my views haven't changed, so here it is again:

    Studies have found two genes, named FZD8 and PAND, that play a part in IC.

    FZD8 (gene map locus 10p11.2) is the gene involved in the production of the antiproliferative factor in people with IC. The antiproliferative factor stops the proper reproduction of cells in the bladder.

    PAND (gene map locus 13q22-q32) has been found to play a role in panic disorders, bladder or kidney conditions, thyroid problems, migraines and other serious headaches, and mitral valve prolapse.

    I think that we people with IC were born with the icky FZD8, and some of us also have the icky PAND. These genes made us succeptable to IC. Then, at some point in our lives, something happened that hurt our bladders. It could have been a urinary tract infection, a hysterectomy, a c-section, a case of chemical cystitis, or some other trauma.

    Some of these traumas may have been hormonal, as hormonal changes have been known to affect the bladder considerably. Therefore, the onset of menopause or perimenopause may have been a trauma for some of us.

    Then, our bodies had an autoimmune response to the trauma, and our antiproliferative factor kicked in. This autoimmune response may also be why some of us have so much mast cell activity in our bladders. Anyway, because the antiproliferative factor stopped our cells in our bladders from reproducing properly, they couldn't mantain a normal bladder lining. Our bladders became vunerable without this protective lining, and this led to the irritation in the bladder wall that causes our symptoms and pain.

    So, I believe that IC is an autoimmune disease with an at least partially genetic basis."

    Well, yeah, that's the gist of it. Like I said, it's just my opinion, based on research I've done on the internet. Don't take it too seriously

    BTW, Bdelaune I'm glad you found something that helped you! I also have very low-level symptoms at the moment, due to a good combo of meds.

    Well, good discussion, everyone. Discussions like this are one of the things that keeps me coming back to the boards.

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  • Bdelaune
    Green Fish and Danica, in reading these posts, i just realized something. Since i have had IC for as long as i can remember, i don't really know what life is like without it. Never really thought about it. Its just something i've always had, and its part of who i am. I always figured that i could have something much worse. (Granted, my IC is not disabling. I can work and go to school, as long as i can get lots of bathroom breaks. Long trips are another issue.) I cannot imagine what it must be like to NOT have IC, and then develop it! Danica, you must be going crazy trying to figure this stuff out. I have gone through the treatment trial and error for about 12 years (i am 32 now, but really didn't start experimenting until i was in my early 20's). Unfortunately, treatments that work for some people (Elmiron), don't work for others (me). It really is trial and error. You may be someone who responds well to food diets. This sounds ridiculous, but i kept a "potty" journal for a while to see if there were triggers that i missed. I carried it around and wrote down everytime i went to the bathroom.

    Since most treatments did not work for me, i had the nerve stimulator implanted, and have had great results from it. I can go to the mall without planning my visit around where the bathrooms are located! Of course, this is a last option type of treatment. And, as with other treatments, has not worked for other people. Again, its all about trial and error.

    Good luck in your search for treatment. Its frustrating, but at least you now know that its not "in your head."

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  • Danica
    Grasping for answers

    Maybe there are multiple reasons why children and women are predisposed to IC. What if some IC victims like myself could have got it through sexual relations? I am so new to IC that I am grasping for answers.

    Leave a comment:

  • green_the_fish
    Hi Bdelaune. There is another user here, IMustPee, who developed IC when she was 6. She's the first one that I can think of off the top of my head, but there are many other users here who have reported that their IC started as children. You're not the only one who finds the theory offensive. The way I see it, either the theory is flawed, or just about everyone who developed IC as a child was molested, and this doesn't sit right with me.

    P.S. Danica, I'm not quite sure the quote is actually from her book. I kinda plugged the book's name into Google and surfed around a bit. But, from what I've heard from other users around here, it does seem to reflect the point of view that presents in her book.

    Personally, I think the theory is bunk, but I support your decision to look into it. I know how it feels to be suffering from pain and searching for an answer. I know how it feels to have your life changed, dramatically, and know that you will never be quite the same again. I hope you find something that helps you. Good luck, and keep us updated
    Last edited by green_the_fish; 02-13-2007, 12:32 PM.

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  • Danica
    Thank you "Green the fish"

    Thank you for posting that quote from her book...I will still look into it because I am diagnosed this year at 40 years of age but feel in my mind that I have had this for years. I had a fiance that was not circumcised and truly my pain began after dating him for two years. We never married because he died of cancer shortly after our engagement. I am now currently married but over the years have suffered 1 or two uti-s a year (way less than the number I suffered with my former fiance) until this last December 13th that what I thought was a uti just would not go away. The pain was more unbearable than ever. Now I am told this is IC and I just cannot beleive it still. But it is pretty obvious that I have all the symptoms.
    Thanks again

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  • sandramac
    Im sorry to have had to tell you otherwise!
    Hugs Sandra

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  • Bdelaune
    Hi. I have never heard of this book before, but am appalled that the author suggests IC is transmitted sexually. I was diagnosed as a child, and am confident i did not acquire it sexually. Since no one can identify a cause for IC, it seems to be an easy out to say it is sexually transmitted. I would not give any credence to an author who would make this unfounded, and clearly erroneuos, allegation.

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  • Danica
    hoping beyond hope

    Hi Sandra~
    I guess since I am a newly dianosed woman with IC I am hoping beyond hope to find something to CURE me. Reading this website by ****** ********* regarding microplasma is something to be hopeful about. But if it were true then so many women would be running to it in droves...
    I will never give up though and in the mean time I thank God for this website.

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  • green_the_fish
    The book “The Interstitial Cystitis Solution” by ****** ********* sets forth the true cause of IC as being infection by mycobacteria or mycoplasma or ureaplasma.

    Interstitial cystitis and vestibulitis cause a great deal of suffering. Customary treatments are low-yield and include eliminating oxalate-rich food such as berries and spinach. 15% of women are thought to now have vestibulitis.

    IC originates as a Sexually Transmittable Disease either by genital or oral / genital contact. It only needed the one initial contact perhaps many, many years ago, to set up a colony of Mycobacteria and cause years of pain. It is my contention from seeing and treating many patients that mycoplasmas and ureaplasmas are the result of some kind of sexual congress either oral or genital or both. In my opinion it commences from a dirty foreskin somewhere and this initial dirty foreskin infects countless vaginas and other penile skin during the course of a modern sexual lifestyle.

    I maintain that Interstititial Cystitis is not mere inflammation. Specific lab cultures and in one case bladder biopsies, have shown our initial suspicions of Mycobacteria or Ureaplasmas to be correct. Effective use of strong courses of the sensitive antibiotic treatment has won the day with every single IC patient fully recovered.

    A Myco/ureaplasma test bench costs a lot to initiate, the
    bacteria are very hard to grow and observe, most labs are not so equipped, and few professionals are acquainted with it. The swab must be tested within an hour.

    “Ureaplasma and Mycoplasma as a group of organisms are the least investigated and
    are probably the greatest cause of more chronic urinary and gynaecological problems
    than any other class of bacteria. They should be considered as a cause of I.C. in women and Non Specific Urethritis in men. They may also be a causative organism in Bacterial Vaginosis and vaginitis thought to be caused by Candida. There are presently no routine culture facilities for identifying such bacteria in the British National Health Service. A High Vaginal Swab may yield ureaplasma even if the urine sample is shown negative. Culture facilities for M.genitalis, M. hominis and M.urealyticum should be introduced as a matter of urgency.”
    Dr Fred Lim, Private Consultant in Genito-Urinary Medicine.

    In culture these two genital infections require great culture care. Dark-field or phase-
    contrast microscopy should be used with temperature set between 360 and 380
    Centigrade. They can be grown on a blood agar plate but for over six hours because
    they are very slow growers penetrating into the agar so that they look a bit like a fried
    egg. In a broth culture U.urealyticum may only take one hour to grow but
    M.genitalium and M.hominis may take six hours. The culture medium is complicated
    and includes several ingredients including yeast extracts, horse serum, blood, glucose
    and others.

    Remember also to check for a lab near you that can test for urine Mycoplasmas at all! They are few and far between and you may have to travel! Try to arrange for onsite testing in this case as samples must be fresh and dark in colour without storage at all.

    Mycoplasmas may well be the causative organism behind the ubiquitous Bacterial
    Vaginosis and indeed, I had that diagnosis off two State swabs before insisting on a
    private clinic swab for Mycoplasma. It turned out to be M.hominis and I’d had it for
    at least three years!

    Of the seven known genital mycoplasmas, Urea urealyticum and M.hominis are very
    commonly found in the general population probably giving rise to medical and
    laboratory disinterest. Even if the lab sees evidence of colonization they may well not
    be reporting it back because it is regarded as normal flora.

    M.hominis has been found present in cases of pyelonephritis, kidney disease, and
    U.urealyticum which is more usually seen in urine samples, can be found in some
    types of bladder stones.

    Mycoplasma causing Non specific Urethritis
    In men, about 15-20% of cases show U.urealyticum as a cause for non-gonococcal

    If the biopsies show positive for Myco or Ureaplasma hit it hard with VD strength Doxycycline .One of the patients I cared for, who travelled to see me from
    Houston, Texas, passed her first pain-free urine in twenty years after a ten day dose of
    6 capsules a day. Her urine samples, vaginal swabs and a bladder biopsy all showed
    Ureaplasma urealyticum. All the patients I have ever counselled with so-called Interstitial Cystitis have been found to have a species of these two organisms, Mycoplasma or Ureaplasma, upon correct urine sampling and vaginal swabbing.

    Blood samples are not location-specific and are consequently useless despite
    company protestations on their websites. Only urine samples and vaginal swabs,
    very freshly taken and on the specific bench within an hour can show genito-
    urinary Mycoureaplasmas.

    I am constantly finding that the VD dose of 6 x 100mg per day is the only one that
    works; anything lower and the patient does seem to need repeated and unhelpful
    courses. These never hit hard enough to finish the organism off and I think that
    Mycoplasma may quite quickly become accustomed to the lower doses.

    As the Mycoureaplasma dies, the infected and inflamed areas merely slough off, ‘fall
    away’. This is now dead skin and is ready for excretion either in urine or as vaginal
    discharge and within menstrual discharge.

    Your sexual partner MUST also take a high dose to stop future transmission and re-
    infection. Condoms are recommended when sex resumes. Circumcised men
    are less likely to carry it but even so, may carry the organism, too, if they were once
    infected by an infected female. Repeat episodes between you must stop because Doxycycline may eventually stop working.
    • Re-infection also leaves permanent miniscule scars into which bacteria gain
    easier entry each time to kidneys, bladder or urethra
    • You must both sort this permanently because re-infection may have dire
    consequences socially, sexually and for antibiotic resistance. Your quality of life may be determined by an unclean and bacterially contaminated foreskin. Merely using a condom before ejaculation is no protection whatsoever because oral sex and initial penetration may have done the damage already.

    Cultures and Biopsies
    Full blown so-called IC has horrendous impacts upon victims’ lives. Bladder biopsies
    taken from such victims usually show granulated or ulcerated patches which then
    apparently confirm to any presiding physician that this is his idea of a verified case of
    IC. A biopsy is removal of a small piece of skin or tissue from any organ, in this case
    the bladder wall.
    Whilst not every victim is biopsied at the ulcer stage it is perfectly possible to biopsy
    granulated, reddened bladder wall patches, IF the surgeon has any inkling of what he
    should be requesting a biopsy for!
    How to set up ideal biopsy preparations
    Do a full Kilmartin Bottle Wash so that instruments don’t push new bacteria inside,
    • The operation should be performed in theatre within the same building as a
    laboratory bench able to culture mycoplasmas and ureaplasmas
    • The system and hospital should be known as efficient
    • A member of staff in the theatre must be dedicated to walking your biopsy
    specimens straight into microbiology
    • Specimens should go quickly into specific broth or onto a culture dish with
    the correct mediums for accurate organism enrichment and growth
    • The surgeon or presiding nurse should have written “all bacteria, fungi,
    PLUS Mycoplasma and Ureaplasma” on the specimen container
    • Before anaesthesia, the patient should double check that this has been done
    • Ask to see the containers!!! If they do not say Mycoplasma and Ureaplasma,
    sit up and refuse the anaesthetic
    You won’t want to go through anaesthesia and recovery for six weeks again simply
    because some fool in theatre has ‘forgotten’ to do this or because the surgeon is
    behind schedule and can’t be bothered!
    See, I have a problem with the fact that Kilmartin thinks that IC is an STD. This is impossible in my situation; I was 15 years old when I got IC and, no matter how many doctors suggested I had a sexually transmitted disease, I know for a fact that it is not so. Virgins don't get STDs.

    Now, I guess you could argue that I was raped and later repressed it, but, uh... I wouldn't like you very much if you suggested that

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  • sandramac
    I was dio with it in 97, treated & found to be free of it.But still got the IC after, I dont belive there is any connection!
    Hugs Sandra

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  • Danica
    Antibiotic name?

    Jen~ Thanks for your quick reply. what is the antibiotic called?


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