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I have beaten IC...for now

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  • ICNDonna
    replied
    I am closing this thread because there are now more than 175 posts.

    Donna

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  • Wolfe
    replied
    For everyone who is keeping score and thinking of trying the "T2C" method for themselves:

    I've been away for two weeks helping my sister get her breast cancer research fund-raiser off the ground. (I'm excited about her product and will post it on the appropriate thread when it is ready!) During this time I QUIT the Lexapro and went very strictly on the elimination diet. I'm scared to eat or drink pretty much everything because my bladder is really letting me know that it has not yet forgiven me for the Lexapro debacle.

    BUT: I started last week back on the glucosamine/MSM, regular old Sam's Club extra-large bottle, and I'm doing well. All of you wonderful people have made me realize that I've had IC for a long time, and I want to keep this bladder functional for an even longer time. So I've upped my Elmiron to the recommended 3x a day, and I'm certainly willing to try something that helps rebuild the lining and stop the inflammation. The hardest part is giving up foods and drinks that do further damage, but the resulting inflammation wipes me out anyway, so it's coming down to a self-defense thing.

    So: So far, another score for glucosamine/MSM. I'll post here in another few weeks and let everyone know how I'm doing. If I'm still doing this well, I might try the buffered C. God knows it has been 15 years since I've swallowed a vitamin tablet, and I worry about getting enough of those too.

    Thanks everyone!

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  • RobinD
    replied
    windwalker, thanks, that will help
    Robin

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  • windwalker
    replied
    Robin, Ester-C is supposed to be a low acid or buffered C. Hope that helps. Good luck to ya.

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  • jamie1
    replied
    HI Jenny 76 - the type of Gluc w/MSM that I've been taking is Walgreens brand. It works great for me. It seems like everybody has a different tolerance for these supplements, though - you may have to try a brand or two to find one your bladder likes (I've seen alot of posts along those lines). I just got lucky the first time out.

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  • RobinD
    replied
    non acidic Ester C

    Where do I find Non acidic Ester C? I went to GNC and bought their brand GNC Ester-C 500. It doesn't say it anything about non acid. It says: Vit C (as Calcium Ascorbate) Calcium (as Calcium Asorbate) Other Ingredients: Gelatin, Cellulose, Calcium Carbonate. Is that one OK? I haven't tried it yet.
    Robin


    Originally posted by glassd18 View Post
    I take Glucosamine & Chondroitin by Natural Factors, and Quercetin 500 from GNC. These supplements have helped me immensly. I tried to do the MSM, but did flare when I took it. I am going to try and introduce it again sometime. I also take non acidic Ester C, Evening Primrose Oil, and Fish Oil. I follow the IC diet too, but can now add a few foods back in, but not too much. MSG is the killer of all additives for me. I drink Evian water every day. I am not 100%, but I am a far cry from when this all first started. Congrats to all of you who are having success with the Glucosamine and MSM!!! Wish me luck to try it again!!

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  • littlebear
    replied
    help with Quercetin problem?

    Hi everyone,

    I've been taking Quercetin for about 8 months while and it really, really helped me. But, about two months ago, I noticed that it started making my symptoms worse and that I was getting really, really awful heartburn too.

    I didn't want to stop taking it, though, because it helped so much before. So, I eliminated everything else that could possibly be causing this. And I've tried different brands to avoid different additives, but here I am up at 3am again in terrible pain from heartburn (even though I'm taking prescription medicine for it now and never had to before) and my bladder is really irritated too.

    Has this happened to anyone else? Also, does anyone have any recommendations for what I might do to stop these effects? Is there something I can take with the Quercetin that will buffer it. It was such a godsend before all of this started and I really don't know what I'll do if I can't find a way to take it any more because it took years to figure out that this was something that would help me (I've also tried Cysta-Q and might go back to that, but it really interfered with my cycle, caused some other related problems, and never worked as well as the Quercetin--plus, I'm not sure I can afford it).

    I'd really appreciate any advice that anyone can give me about this.

    Thanks, little bear

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  • Jenny76
    replied
    Quercitin and/or Glucosimine with MSM



    Hello,

    What brands do you use because I will be running to the store after work!! ANYTHING is worth trying at this point, I am in soooo much distress!

    Leave a comment:


  • jamie1
    replied
    Dear jsruby - In my experience, gluc w/msm is what is making the difference; I know that now because I was on it religiously for about 3 months and my flares/symtpoms were GONE. Then, I got lazy about taking it for a few weeks (because I felt perfectly fine), and the pressure & discomfort started back again - I was basically back to square one. (it is criticial to note that I was still taking my Elavil, Elmiron, and Atarax religously during this time!) So I am pretty much realizing that it was indeed the gluc that made the difference. I went back on my gluc 3x a day and within 2 weeks was feeling almost perfectly fine again. (just got back from my high school reunion where I had as many vodka drinks as I wanted. I even ate buffalo wings!) So, a few weeks ago I cut my elmiron from 4 pills a day to 1x a day, and am feeling better than ever. At some point I may drop the whole cocktail and try gluc w/msm alone.

    Leave a comment:


  • jsruby
    replied
    just wondering

    I have not read all the previous posts, so don't know if already covered. But, have you tried to stop taking everything and see if you flare, then take the MSM/gluc only, to see if that is actually what helped you?

    Leave a comment:


  • notmybestday
    replied
    Trying2Cope --

    I'm not sure if this has been asked already, but what were your chief symptoms? I'm very happy that you found something that worked for you and that others are able to benefit from your experience... Just got officially diagnosed myself, and these stories give me so much needed hope.

    Leave a comment:


  • bemmer
    replied
    going to try it

    definalty going to try the msm/gluc and quentirne thingy. im very much into alternatiave treatment and doctors quite frankly scare me.

    im going to get both my chriro and natural healer to test me for the products to see if i will be ok on them and if they are helpful.........

    im having a major flare at the moment cant pinpoint it........i have never felt this bad as usally i have it farely mild..........im also experincing stabbing pains in the girly region and really sore nerve/muscle pain down back of legs and bottom weird...........

    at the moment experiencing
    urgency
    pain in bladder and spasms
    buring on outside when urinatiog
    man sleep would be good............oh to sleep

    prob under two much stress at moment as well.....we are currently going throu social worker interviews to get our name put onto the adoption list for a baby.........im 36 and so want a baby,,,,,,,,,,,,but want health more!!!!!!!!!
    does IC go away if you get preggie? i have completly wacky periods and the thought of being preggie with this horribel thing along with vuvodina feeling and stomach issues si what leads me to adoption!!!!!!!!!!!!!!! thou we have tred to get preggie but no can do...

    I got my IC after i was 17 when i was suffering from anerexia leading me to belive immune problem, as of course i was not a healthy chick and lived on coffee and diet coke!!!!!!! not good for the bladder........

    i wonder if the combo will also help with vulodynia as well......i have read msm is great for fibro as well

    Leave a comment:


  • Trying2Cope
    replied
    Originally posted by Wolfe View Post
    Hey, Walgreen's I can handle!

    I have been a guniea pig since I was 19 with endometriosis and they wanted to do anything BUT surgery on one so young. It was "experimental this" and "non-proven that," but I figured I was contributing to research and it was worth a try. (Surgery at 23 was the cure.)

    When I first discovered Elmiron, it was in trial mode and not yet FDA approved. I was one of the volunteers who took it for two years and filled out all the forms so it could be put on the market. NOT for free, I might add. But it worked for me, and I'm ecstatic that now it works for so many people.

    So trying something new doesn't sound too scary to me. I'm still flaring; maybe it was the MSM, but I doubt it. I'll stop today and read the label on the Walgreen's bottle. Tryingtocope, I appreciate all the info you've passed along and how vigilant you've been over those of us reading your posts. Something that could actually help rebuild the lining is a miracle to me because I too remember how bad I was in the beginning. So thanks for sharing your experience, and I'm glad it's working for people here, whether it works for me or not.
    I have to make a correction to my previous post. I bought the CVS brand of glucosamine/msm at CVS, not the Walgreen's brand at Walgreen's. I get those two confused! Sorry!

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  • Wolfe
    replied
    Hey, Walgreen's I can handle!

    I have been a guniea pig since I was 19 with endometriosis and they wanted to do anything BUT surgery on one so young. It was "experimental this" and "non-proven that," but I figured I was contributing to research and it was worth a try. (Surgery at 23 was the cure.)

    When I first discovered Elmiron, it was in trial mode and not yet FDA approved. I was one of the volunteers who took it for two years and filled out all the forms so it could be put on the market. NOT for free, I might add. But it worked for me, and I'm ecstatic that now it works for so many people.

    So trying something new doesn't sound too scary to me. I'm still flaring; maybe it was the MSM, but I doubt it. I'll stop today and read the label on the Walgreen's bottle. Tryingtocope, I appreciate all the info you've passed along and how vigilant you've been over those of us reading your posts. Something that could actually help rebuild the lining is a miracle to me because I too remember how bad I was in the beginning. So thanks for sharing your experience, and I'm glad it's working for people here, whether it works for me or not.

    Leave a comment:


  • Trying2Cope
    replied
    Originally posted by Wolfe View Post
    I've searched on the Web for supplements without additives, and I also stopped at our local health food store. I couldn't find anything "pure" on the Web (if Tryingtocope mentioned a brand name, I couldn't find it), and the stuff in the store is EXPENSIVE. Nor can I find one that is JUST glucosamine and MSM. The purer the supplement, the higher the cost. But I'm not giving up, I'll find one.
    I actually did mention specific brand names, along with links to the supplements I was taking, but it appears the links were removed by the moderators of this board.

    I am currently taking MSM/Glucosamine I purchased at Walgreen's, and it's the Walgreen's brand. It's working just fine, and Walgreen's is a national chain so it should be easy to find. Note: I do NOT take the kind with chondroitin in it. I have noticed a lot of people here saying they are taking that kind, but that is not the kind you want. I have read that chondroitin causes flares. I have no personal experience with that, but why risk it? I switched brands because the Walgreen's brand had 120 capsules in a bottle...enough for two months...so I'm saving some money.

    I no longer take Quercetin, and I don't really seem to miss it. I'm sure it did help in the beginning, but I'm doing fine without it. If you do take Quercitin, be sure to purchase the "non-citrus" type. There are companies that do make it. Just do a Google search for "non-citrus quercetin" and you'll find plenty of listings for it.

    I should also note something here, just to be clear. I have no agenda other than sharing my experience and trying to help people. I do not work in the natural supplement industry, and other than these supplements I am taking for my IC, I don't take any other kind of supplement or "natural remedy". I do not own stock in companies that produce MSM, glucosamine or quercetin. It doesn't benefit me to get people to take these supplements. I am not even recommending that anybody stop taking their meds and take these supplements at all. I have simply found something that works for me (and some other people) and decided to share that experience with others. I remember all too well the horrible pain I experienced when I was first diagnosed. There were many late nights I spent in incredible pain during which I just wanted to die...anything to make that pain stop. These supplements helped me. I live a normal life now. Perhaps they will help others. If they do, that is great. If not, I hope someday they will find something that helps them, too. The decision to try means other than medication to treat IC is strictly a personal one, so you will have to decide for yourself if this treatment regimen is right for you.

    I am not a doctor, nurse or any other kind of health professional. I'm just a guy who discovered that cats have a treatment option for IC that many people are not trying, and it worked for me. There have been some clinical trials for MSM/glucosamine for the treatment of IC. The official results have been mixed, at best...so obviously this is not for everybody. More study is needed, in my opinion. What I do know is it works for me, and that was the best I could hope for.

    Leave a comment:

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