Latest Blog Article: The Summer 2017 IC Optimist Is Now Available
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  1. #16
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    Re: CURED! It's over!

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    Hey Morgan,
    So happy D Mannose is working so well for you. If your pain is down to a two after just a couple of days I would stick with it at that dose for at least a couple more. You have nothing to loose! My pain suddenly went to zero! And is zero right now. I'm still taking the regular maintenance dose of one teaspoon twice a day, and bump that up after inter course, as that seems to be my problem. Just simple E. coli infections that are resistant to antibiotics. I don't believe I'm Auto Immune, and can't help but wonder how many more of us may be the same? Maybe none, but it's sure worth a shot.
    I had hydrodistention and it made me worse if anything. Surely not better. I wish I had not done it as it's always risky going under full anesthesia, was expensive even with insurance and invasive.
    Please let us know how you feel if you keep it up for several more days.
    Good luck! Have a nice weekend!

  2. #17
    ICN Staff ICNDonna's Avatar
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    Re: CURED! It's over!

    Quote Originally Posted by Morgan123 View Post
    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
    Yes, I am one who is helped by hydrodistentions. However, I don't recommend it as a first treatment --- since you did have 8 months of relief, it's an option you might want to consider. If you opt to do another hydro, I strongly suggest you be sure it will be a low pressure one. I have had both high and low pressure hydrodistentions and found low pressure helps as much as high --- with less potential harm.

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

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    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.
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  3. #18
    ICN Member
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    Mar 2017
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    Re: CURED! It's over!

    Ladies I was just diagnosed with a severe deficiency in magnesium. I was admitted to the hospital for 3 days as a result. It causes several chronic conditions. Symptoms can include recurrent utis, and ibs. Antibiotics, alot of the gi medications, and steriods all further deplete your already low magnesium. If you all have time, it's worth researching. 80% of Americans are now deficient.

  4. #19
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    Re: CURED! It's over!

    Wow! That's crazy. Thanks for sharing this with us. Funny, I just started taking it. Now I want to go get checked out. Yeah I'm still trying to put the puzzle together. This is so great to know. I'm sorry you've been through this and hope you're feeling better now.

  5. #20
    ICN Member
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    Sep 2015
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    Re: CURED! It's over!

    Quote Originally Posted by Sondrabythesea View Post
    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.
    I wouldn't say cured so soon...if you have already been diagnosed with IC. Remission maybe? But once diagnosed...there is no cure. Remedies and hope yes...but no cure. I was never officially diagnosed with IC as my urogynecologist could not pin point what was causing my urethral burning...and had put a diagnosis on my chart as chronic pelvic pain...this was 3 year's ago...and today I am completely symptom free. It took me awhile to really figure out my body and what was causing this fight...my conclusion came down to it being a hormonal imbalance....I've noticed that right before and after my periods...I will get really mild flares...nothing a few ice cubes won't wipe out in one soak with Epsom salt...however, when I was going through the initial onset...it was unreal...took me awhile to get to a better place. After a few months of seeing my uro...I never went back...not because he wasn't a good doctor...he was very well educated in IC...but more so to work on my minds well being...it really plays a big factor in your road to healing. As I sit here and write this reply...it's ironic to think that just a few years ago i was a complete wreck on the road to figuring this mysterious thing called IC out. I wish you the best...and everyone else who frequents these forums. There is hope! But your mind and body must work together!

  6. #21
    ICN Member
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    Apr 2016
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    Re: CURED! It's over!

    Quote Originally Posted by sophee 0168 View Post
    I wouldn't say cured so soon...if you have already been diagnosed with IC. Remission maybe? But once diagnosed...there is no cure. Remedies and hope yes...but no cure. I was never officially diagnosed with IC as my urogynecologist could not pin point what was causing my urethral burning...and had put a diagnosis on my chart as chronic pelvic pain...this was 3 year's ago...and today I am completely symptom free. It took me awhile to really figure out my body and what was causing this fight...my conclusion came down to it being a hormonal imbalance....I've noticed that right before and after my periods...I will get really mild flares...nothing a few ice cubes won't wipe out in one soak with Epsom salt...however, when I was going through the initial onset...it was unreal...took me awhile to get to a better place. After a few months of seeing my uro...I never went back...not because he wasn't a good doctor...he was very well educated in IC...but more so to work on my minds well being...it really plays a big factor in your road to healing. As I sit here and write this reply...it's ironic to think that just a few years ago i was a complete wreck on the road to figuring this mysterious thing called IC out. I wish you the best...and everyone else who frequents these forums. There is hope! But your mind and body must work together!
    I have to agree. I went nearly two year and thought I was cured. Two years with no medications, eating mostly whatever I wanted (although I still stayed away from the culprits I thought were giving me problems....... diet coke, artificial sweeteners in general, etc.). Then I woke up one day and it was back. I hope your symptoms truly are gone for good, but if do in fact have IC, be very careful.

  7. #22
    ICN Member
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    Jul 2017
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    7

    Re: CURED! It's over!

    Hi, new with all this and the meds. What is Biofilm> Thanks.

  8. #23
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    Jul 2016
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    559

    Re: CURED! It's over!

    Read the first post and click on the link in it about bio films.

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