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  1. #1
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    CURED! It's over!

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    CURED!!!! FREE AT LAST!!!!
    After forty years of recurrent UTI's,
    uncountable treatments with antibiotics and Dr. Appointments, three months of PT, surgery, constant severe pain and a diagnosis of severe IC for which I was told "I'm sorry and good luck" by a Urologist I have cured my self.! My past two years have been a nightmare. Debilitating pain and illness, quit my job, acupuncture, meditation, restricted diet, wardrobe change, zero exercise, spending most of my days in bed, social life down the tubes. I kept repeating, non of this is adding up. I'm not going to let this beat me. Has to be an easy answer. I came across this post in IC Network and it was the game changer. It's not for everyone I'm sure, but if it helps even one reading this I have to tell it. It was instant bingo for me as soon as I read it.
    https://www.ic-network.com/forum/arc...p/t-70747.html
    So for me it was Biofilm and treatment with D Mannose. Just as told here by this woman to whom I will forever be grateful.
    Last edited by ICNDonna; 06-15-2017 at 05:02 AM. Reason: Removed link to page that no longer exists.

  2. #2
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    Re: CURED! It's over!

    How long have you been symptom-free?

    "When you gotta go, you gotta go!"

  3. #3
    ICN Staff ICNDonna's Avatar
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    Re: CURED! It's over!

    I'm glad you're feeling better; how long have you been in remission?

    Donna
    Have you checked the ICN Shop?
    http://www.icnsales.com for US & Canada
    http://www.icnshop.com for all others

    Patient Help: http://www.ic-network.com/patientlinks.html

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    Living with IC Video Series: http://www.ic-network.com/conditions...-video-series/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [IMG]

    Anyone who says something is foolproof hasn't met a determined fool

  4. #4
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    Jul 2016
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    Re: CURED! It's over!

    I've never heard anyone say: "I'm cured"!! Although most of the people I know who have I.C. do NOT present with concurrent UTI's. I've had less than 5 actual UTIs in my entire life, and did not have ANY before being diagnosed (at age 19) with I.C. I'm fairly certain that I.C. itself is not caused by a bacterial agent, even though the irritation from recurring infections may predispose one to an eventual diagnosis of I.C.

    All I can say is THAT'S FANTASTIC NEWS!! I do not think that John Q./Jane Q. Public gets how debilitating this disease can be (your description of how your symptoms curtailed your life so drastically was moving, and right on the money.). Not to mention the way it feels to be dismissed and/or shamed by medical professionals. My own sister thinks that because she's had three children and she (@ 51) has to get up at night, our problems/suffering are equivalent. Just shows you what the understanding level is out there.

    I do believe that if this disease had the reverse demographics (way more men suffering than women) the story would be completely different. You can lay money on it. (Which they would, if men were suffering in this way.) Viagra anyone? (The single most abused drug on the market, if you can believe that!) I don't hear any calls for a drug war on THAT little pill, do you?

    Anyway, now I'm soapboxing and rambling. I'm VERY EXCITED for you and others like you. Kudos for your perseverance and for this website created by Jill!!!! YIPPEE!

  5. #5
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    Re: CURED! It's over!

    Hi Bladderella,
    Six weeks. Pain was gone after several days, of dosing every couple of hours. I cut back to two doses daily a week after that. I've continued to feel better in all other ways since. My bladder has healed and I'm able to eat and drink ANYTHING!!!!! I will continue with once or twice a day forever! This may not be the answer for all, but I'm so thrilled I gave it a shot! My story is exactly the same as in the post I linked. I was shocked to read the crazy great reviews for d-Mannose on Amazon too. Check them out. It was an eye opener. D-Mannose will only help with e-coli related infections!

  6. #6
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    Re: CURED! It's over!

    Six weeks Donna,
    I'm sure I will have many more infections in the future and for that reason I will continue to take D-Mannose.

  7. #7
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    Re: CURED! It's over!

    YES Lisa, to everything you said! Spot on! Bravo! Although my friends have supported me, I can also tell they think I'm a crackpot. My husband on the other hand has seen me doubled over in spasms on the floor at 3 in the morning, hardly able to breath through the pain. Snot pouring down my face. Guy is a saint. I do want to add that many, many times my cultures came back negative.That I now believe was because the bacterial infection was incased in biofilm and wasn't being passed in urine. Does that make sense? It does to me. I hope you feel better and find relief. And yes, thank you Jill!

  8. #8
    ICN Member
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    Re: CURED! It's over!

    i love D Mannose. if you have E Coli it is amazing. i take it daily and no longer get coli ute's now....just the other bugs. but one less!

  9. #9
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    Re: CURED! It's over!

    I have a question. I do not have enough e-Coli...according to a lab report from a naturopath. However, I do have other bacterias in my stool. My pelvic bladder pain is very minimal due to my Elmiron. I have started having some other vulvadynia type problems. Would D-mannose be contraindicated for me? Would it cause more problems with my low e-coli. Does it work on other bacteria as well?

    Oh, also I notice that whenever I am on an antibiotic I feel better. I was last on one for bacterial vaginitis. I may have a slight yeast problem as well. Go back to doctor next week.

    Thank you for any input! Hugs!
    Last edited by Leelee52; 06-19-2017 at 05:23 PM. Reason: Add something

  10. #10
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    Re: CURED! It's over!

    Hi Lee,
    Apparently D Mannose only works on E. coli bacterial infections. I had tested positive for E. coli many times in the past but it wasn't showing up in most cultures done the past few years. I would beg for antibiotics anyway and they did seem to help keep pain at bay for a while but it would soon return. I now believe the cultures would come back negative because the infection was incased in Biofilm and wasn't being passed in my urine. That it's now protected in the Biofilm and become resistant to antibiotics.
    I read when taking D Mannose during a bad flare to go for the kill instead of just keeping it at bay as the antibiotics were doing. To take it every few hours for a couple of weeks instead of just the maintainance dose of twice daily. That way it would get everything hiding away and protected in the Biofilm. Made sense to me and it worked. Now I just take the maintainance dose and bump back up after inter course as that has always been my cause of infection.
    Make sure to read the original post I read and see if it clicks for you too.
    I hope you feel better!

  11. #11
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    Re: CURED! It's over!

    Hi Sondrabythesea,

    I'm so glad to see your post. I am new to this network. After reading your symptoms it sounds very similar to what I have experienced. I have had IC for 3 years now. My Uro-Gyno did a Cystoscopy and filled my bladder up to full roughly 9 months ago and I was back to normal with absolutely NO symptoms at all afterwards. He said it was a case of IC. After 8 months of pure bliss with my bladder I sat on the toilet one morning to cloudy urine (the usual UTI symptoms, fever, flu-like symptoms, sharp pain etc.) and my IC flare was back.

    Since then I have gone back to the Uro-Gyno and he put me on ditropan (the side effects are horrible), Ellura, Hiprex and Betmiga and the IC Diet. All have reduced symptoms significantly but the urgency and frequency is still there. I just bought both the D-Mannose powder and the capsules online and hope to eradicate as much as I possibly can and they will hopefully be running through my bladder in the next few days when they arrive. I can only hope that it is an E-Coli colony. I have had a bad history with recurrent UTI, Glandular Fever, and Thrush. I hope that your post can change my life. I am only 23, my life has only just started, so at this point I can only hope for a miracle (like the one that I am so pleased has happened to you!).

    I remain hopeful and thankful to be apart of a network that allows me to share my experiences with parallel lives.
    Well wishes to all from Sydney, Australia.

  12. #12
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    Re: CURED! It's over!

    Hello!
    Thank you for this thread. I have been suffering for 4 years. It all started with a Uti that the dr treated with wrong antibiotics. This continued for a year. 1 year of antibiotics to kill the bug. My bladder never recovered. I've tried many natural therapies that have helped but not cured. I've recently had a hysterectomy as they found my bladder was adhered to my uterus. My bladder felt wonderful for 7 weeks and then the spasms, burning and frequency started again. This is the end of day 1 for me on the d- mannose and coq10. I've come down with another UTI this morning but I took 500mg tablet every couple of hours till I could get antibiotics and it was already getting better. Well enough to be able to sit in the waiting room anyway. I am hoping this regime is going to get rid of this once and for all.

    I'm also from Sydney Australia. I got my d mannose from iherb. It's the cheapest I could find.

    Good luck and let's hope we all get well x

  13. #13
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    Re: CURED! It's over!

    My fingers are crossed for you Morgan. I hope to read another reply to this post soon about you feeling good again.

  14. #14
    ICN Staff ICNDonna's Avatar
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    Re: CURED! It's over!

    There's a link in my signature below to the AUA Guidelines for Treatment that can be a help in learning how to control IC symptoms.

    It's always good to hear from ICers who have found ways to keep their IC under control --- even though there's (so far) no permanent cure. I encourage you to keep up what you're doing when you find things that work for you.


    Donna
    Have you checked the ICN Shop?
    http://www.icnsales.com for US & Canada
    http://www.icnshop.com for all others

    Patient Help: http://www.ic-network.com/patientlinks.html

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    Living with IC Video Series: http://www.ic-network.com/conditions...-video-series/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [IMG]

    Anyone who says something is foolproof hasn't met a determined fool

  15. #15
    ICN Member
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    Re: CURED! It's over!

    Thank you for all of your encouragement so far ladies. I am on day 3 of pure d-mannose and it has made my symptoms considerably better. Before I would have rated my pain, urgency etc. an 8/10 (10 being a lot of pain). After taking d-mannose every 2 hours the pain has dropped down to a 2/10.

    Donna, I have a question for you. I have read somewhere in another thread that you have always had great success with hydrodystension. I had a cystoscopy 10 months ago and was COMPLETELY symptom free for 8 months. My symptoms came back 2 months ago one night. And ever since I have been adhering to the IC diet, flushing with water, cut out coffee and had no culture in urine tests but nothing has helped.

    So my question is, what is your opinion on hydrodystension as an ongoing therapy for IC sufferers? Have you found success with this type of treatment in the long term? How often do you get the procedure done? Do you think that if I had success with it during my cystoscopy when I was diagnosed that it will work again? (I know you are a support offerer and not a doctor, but your advice/story/experiences with this as an ongoing treatment would help me a great deal when I ask my urogyno at my next appointment). I have noticed you have a lot of knowledge and experience with IC which is why I value your opinion or advice.

    Thank you kindly. I hope everyone in this thread is doing really well and feeling stronger every day.

    Kindly,
    Morgan

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