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  • #16
    So I see it actually it gets automatically censored. Why is that? I ask with the utmost sincerity and respect. I have received so much kind support from this board and I hope I have offered some to people as well. It just seems so strange that you literally can not post a name of a respected medical professional.
    Sorry the original post was about D- mannose,
    Last edited by Deirdre; 05-27-2011, 05:17 PM.


    wife, mom to three, theater professional
    diagnosed- "mild" IC Feb 10, 2011
    symptoms started on and off Nov 2010
    urgency, frequency, general bladder discomfort,itching, and other nasty feelings
    I am going completely holistic with herbs and diet to heal

    Comment


    • #17
      Regarding the D-Mannose, those of you who are using it, are you using the powdered, and are you using it without cranberry? I could not find it without cranberry in several health food stores, which is frustrating since I'm scared to try it with the cranberry for obvious reasons. Anyone tried Gotu Kola here? I tried it but flared.
      Hugs to my IC pals!

      -Michelle
      Wife and mom of 2 kiddos (11 & 13). I am 51 years old
      Diagnosed with IC in October of 2010 after a severe allergic reaction. I was 43 years old with a 3 yo and a 5 yo.
      Elmiron instills gave me 2 full months of total remission until January of 2011
      Started Elmiron on 10/22/2010 (200mg twice per day)
      Started Elavil 20 mg. in 2/2011 - 8-2012
      Started 25 mg. Hydroxyzine in July 2011 - 10-2012
      Prosed DS as needed for flares (generic is called Hyophen - much cheaper and works but I prefer Uribel)
      Tums with any possible caution foods, now I take nothing but Hyophen if needed
      Started running in February of 2011, yoga in 2012 to current
      Lost the constant "urge to pee all the time" feeling in April 2012 after starting Detrol LA (took 4-6 weeks to kick in)
      No longer using any supplements
      Current meds: 200 mg elmiron - that's it. I eat pretty much anything. Stress triggers flares!

      Comment


      • #18
        I buy it from Amazon in the powdered form. No cranberry in it as far as I know.
        Diagnosed with IC in April 2011. Medications and IC treatments did not help, diagnosed with PFD in September of 2013. Still searching for answers as to why I have never-ending frequency/urgency issues.

        Current medications/treatments:
        Pelvic physical therapy, valium suppositories, b and o suppositories, acupuncture, probiotics, magnesium, epsom salt baths

        Previous medications/treatments:
        Elmiron, Hydroxizine, Elavil, VESIcare, Series of rescue instillations using Elmiron, water, lidocaine, & sodium bicarb and self-cathing with instills as needed, D-mannose, Glucosamine, Hyophen (generic Prosed), Colostrum, IC diet, PTNS, chiropractic treatments, Desert Harvest Aloe Vera, CystoProtek

        Comment


        • #19
          Thank you Phoenix Girl! That is wonderful. I will try to find it. I noticed that you were just diagnosed last month. How are you doing in your healing?
          Hugs to my IC pals!

          -Michelle
          Wife and mom of 2 kiddos (11 & 13). I am 51 years old
          Diagnosed with IC in October of 2010 after a severe allergic reaction. I was 43 years old with a 3 yo and a 5 yo.
          Elmiron instills gave me 2 full months of total remission until January of 2011
          Started Elmiron on 10/22/2010 (200mg twice per day)
          Started Elavil 20 mg. in 2/2011 - 8-2012
          Started 25 mg. Hydroxyzine in July 2011 - 10-2012
          Prosed DS as needed for flares (generic is called Hyophen - much cheaper and works but I prefer Uribel)
          Tums with any possible caution foods, now I take nothing but Hyophen if needed
          Started running in February of 2011, yoga in 2012 to current
          Lost the constant "urge to pee all the time" feeling in April 2012 after starting Detrol LA (took 4-6 weeks to kick in)
          No longer using any supplements
          Current meds: 200 mg elmiron - that's it. I eat pretty much anything. Stress triggers flares!

          Comment


          • #20
            You're welcome! I don't think we're allowed to say name brands on the board but if you do a search on Amazon for the dmannose powder you won't have any problem finding it. I can't really say how well the capsules work because I haven't tried it in that form but the powder is great. I take a teaspoon or so once or twice a day just for peace of mind. Also, 1/2 a teaspoon before sex and 1/2 teaspoon again right after to keep UTI's at bay. I've only had the one UTI that apparently triggered my IC but now I have no idea what my bladder's doing and I just don't want to take any chances. Also, it totally could be a coincidence but it seems like some days, the dmannose does help me go a little longer between pees.
            Diagnosed with IC in April 2011. Medications and IC treatments did not help, diagnosed with PFD in September of 2013. Still searching for answers as to why I have never-ending frequency/urgency issues.

            Current medications/treatments:
            Pelvic physical therapy, valium suppositories, b and o suppositories, acupuncture, probiotics, magnesium, epsom salt baths

            Previous medications/treatments:
            Elmiron, Hydroxizine, Elavil, VESIcare, Series of rescue instillations using Elmiron, water, lidocaine, & sodium bicarb and self-cathing with instills as needed, D-mannose, Glucosamine, Hyophen (generic Prosed), Colostrum, IC diet, PTNS, chiropractic treatments, Desert Harvest Aloe Vera, CystoProtek

            Comment


            • #21
              You can buy d-mannose at any natural food store or Whole Foods. I have some but have not used it for anything other than ligit uti. I wonder if I should give it a go. It says right on the container that it has a neutral ph.

              Comment


              • #22
                D-Mannose

                Hi,
                I was wondering if you are on meds would that have a bad interaction? I have the burning real bad and would love to try it. but am on so many meds wonder if that would be a problem.
                Thanks,
                Linda

                Comment


                • #23
                  Glad it helped someone else

                  Just wanted to say that I have been using D-mannose every day, 6grams a day, for about a year and a half now, and I credit it with completely curing my IC.

                  I firmly believe that many, (not saying all) cases of IC are low-grade UTI's that doctors fail to diagnose. After doing a lot of research, I was able to find out that there are different standards in lab testing for what constitutes a UTI, one for men, one for women. The male standard says that ANY colony forming units of bacteria in the sample would be considered a UTI, while the female one allows there to be up to 100,000 CFU's before the patient would be diagnosed as having a UTI.

                  Why? Well, obviously, male anatomy means it is much less likely that a man would or should have CFU's of bacteria in his urinary system, hence the strict standard for men. The female urinary system is far less likely to be bacteria free, and I understand that concept, and I am sure that doctors are trying to avoid false positives...but, this standard SERIOUSLY needs to be re-examined.

                  One huge reason, is that it only takes 8 hours for a few bacteria to multiply and become several million. Another, would be bacterial dormancy, a hibernation-like state that some bacteria can go into when attacked by antibiotics to "hide" from them. (Google it, you'll be shocked like I was.)

                  Unfortunately, doctors do not see shades of gray.

                  so, until all pee is tested as male pee, many women will continue to be misdiagnosed

                  The way that D-mannose works is that it is a simple sugar, which is not readily metabolized by you body, therefore it is expelled as waste in your urine. This type of sugar is the most wonderful type of food that bacteria can imagine, so while the d-mannose is inside your bladder, they cling to it, and are flushed out when you pee. For me, this is nothing short of a miracle.

                  So like I said, I have been taking it for 18 months now and no more horrible pain. Also, try as I might have when I began taking it, I cannot find any reason not to take the stuff. Like my family doctor told me; "It is just sugar...there is no possible way you can overdose on it, it can't interact with anything...if it works, use it."

                  Any questions at all PM me
                  ~Jenny, 26 F
                  Diagnosed with;

                  Mild IC, November 09
                  many many many UTI`s (always e coli so far)
                  endometriosis
                  ovarian cysts

                  Currently taking;

                  D-Mannose powder, 1 tsp 2 times daily
                  D-Mannose capsules, 4 500mg caps once before bed
                  Fish oil
                  Vitamin E
                  Caprylic acid, 1 600mg cap 2 times daily (yeast control)
                  Glucosamine Sulfate (heals your bladder!!!)

                  I am currently in total remission!!! :woohoo:


                  Past meds;

                  Elavil
                  Percocet
                  Dilaudid
                  Elmiron
                  Pyridium (never helped at all...)
                  Detrol (doesn`t do anything anymore)
                  Bactrim (10+ times)
                  Keflex (THE most useless antibiotic of all)
                  Macrobid (10+ times)
                  Levaquin (once)
                  Cipro (15+ times)
                  Rocephin (IV, shots) (8 times that I can remember.)
                  Darpaz

                  Procedures;

                  Ovarian cyst removal 04`(seemed to start everything)
                  Cystoscopy Nov 09` dx`d with IC


                  "Well I looked my demons in the eyes,
                  laid bare my chest, said "Do your best, destroy me.
                  You see, I've been to hell and back so many times,
                  I must admit you kind of bore me."
                  There's a lot of things that can kill a man,
                  there's a lot of ways to die,
                  yes and, some already did that walked beside me.
                  There's a lot of things I don't understand,
                  why so many people lie.
                  Its the hurt I hide that fuels the fire inside me.
                  Will I always feel this way?
                  So empty, so estranged..."
                  ~Ray Lamontagne

                  Comment


                  • #24
                    D Mannose

                    Gosh that is great. I did get a bottle of pills this weekend. The first day I took 3 pill and the second day 2 pills. They had the powder but I didn't get it. Do you think both should be taken? What does it taste like?
                    It would be so great to get rid of this IC. I have had it since 2002 and have a interstim in.
                    Thanks so much for your information, I guess I need to up the pills that I am taking. Do you drink a lot of water with them?
                    Thanks,
                    Linda

                    Comment


                    • #25
                      Please don't count on d-mannose to cure interstitial cystitis. If your problem is bacteria, it can help, but there isn't a cure for IC yet. Maybe this year?

                      Donna
                      Stay safe


                      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                      Have you checked the ICN Shop?
                      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

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

                      Sub-types https://www.ic-network.com/five-pote...markably-well/

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

                      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.
                      [3MG]

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

                      Comment


                      • #26
                        Wow miss Donna, it's kind of a shame that you are so dismissive of something that changed the life of this diagnosed IC patient. I will plainly tell anyone that I do not believe that ALL cases of IC are like mine, but knowing my own experience and how much this has helped me, I feel obligated to share this with others. And, clearly, I am not the only one who has had this experience.

                        To respond to you saying not to count on d-mannose, I would say do not count on the IC diet, or elmiron instills, or any of the doctor prescribed so called treatments that I tried that either did nothing for me or made me worse.

                        Miss Linda, I take both the powder form, and the pills, the powder is more effective in my opinion...it kind of tastes like, well, envelope glue to be honest! LOL! but I do take both, because the pills can be more convenient at times. Yes, always take it with at least 8oz of water. And no, it will not be an answer for everyone's IC, but you owe it to yourself to try. Best wishes.
                        ~Jenny, 26 F
                        Diagnosed with;

                        Mild IC, November 09
                        many many many UTI`s (always e coli so far)
                        endometriosis
                        ovarian cysts

                        Currently taking;

                        D-Mannose powder, 1 tsp 2 times daily
                        D-Mannose capsules, 4 500mg caps once before bed
                        Fish oil
                        Vitamin E
                        Caprylic acid, 1 600mg cap 2 times daily (yeast control)
                        Glucosamine Sulfate (heals your bladder!!!)

                        I am currently in total remission!!! :woohoo:


                        Past meds;

                        Elavil
                        Percocet
                        Dilaudid
                        Elmiron
                        Pyridium (never helped at all...)
                        Detrol (doesn`t do anything anymore)
                        Bactrim (10+ times)
                        Keflex (THE most useless antibiotic of all)
                        Macrobid (10+ times)
                        Levaquin (once)
                        Cipro (15+ times)
                        Rocephin (IV, shots) (8 times that I can remember.)
                        Darpaz

                        Procedures;

                        Ovarian cyst removal 04`(seemed to start everything)
                        Cystoscopy Nov 09` dx`d with IC


                        "Well I looked my demons in the eyes,
                        laid bare my chest, said "Do your best, destroy me.
                        You see, I've been to hell and back so many times,
                        I must admit you kind of bore me."
                        There's a lot of things that can kill a man,
                        there's a lot of ways to die,
                        yes and, some already did that walked beside me.
                        There's a lot of things I don't understand,
                        why so many people lie.
                        Its the hurt I hide that fuels the fire inside me.
                        Will I always feel this way?
                        So empty, so estranged..."
                        ~Ray Lamontagne

                        Comment


                        • #27
                          MsMack1985

                          It is possible that you dont have IC. It is true that there is no "known cure" for IC. Maybe you do have a low grade infection. It may be hard to get rid. My gyn told me that she had some patients misdiagnosed with IC but who really ended had low grade UTI and she helped them get rid of it with long term anti-biotics. If you are not getting much help from your doctor. You may want to go to an infectious disease MD. Hopefully that is the case with you because IC never goes away hopefully there is a cure soon though. but an infection like what you may have can be treated. good luck.
                          Diagnosed with IC October 2009- through bladder biopsy (no glomerations or hunners ulcers found, just irritation)

                          I have moderate-severe IC

                          Currently stopped taking all medications due to pregnancy

                          Comment


                          • #28
                            I love being told this. "You may not have IC"

                            Ok. Well, I was diagnosed via cysto/hydro, which showed that I had hunner's ulcers, and inflammation, and was told at that time I had "mild" IC.

                            I tried the antibiotic solution, short term, long term, IV, you name it. The scary fact is, some bacteria are able to survive any kind of antibiotic you can throw at them. (again, look up bacterial dormancy, very interesting.)

                            Please consider the information in my above posts, and ask yourself again, how many cases of IC are like mine?
                            Last edited by MrsMack1985; 06-30-2011, 04:45 AM. Reason: Additional details.
                            ~Jenny, 26 F
                            Diagnosed with;

                            Mild IC, November 09
                            many many many UTI`s (always e coli so far)
                            endometriosis
                            ovarian cysts

                            Currently taking;

                            D-Mannose powder, 1 tsp 2 times daily
                            D-Mannose capsules, 4 500mg caps once before bed
                            Fish oil
                            Vitamin E
                            Caprylic acid, 1 600mg cap 2 times daily (yeast control)
                            Glucosamine Sulfate (heals your bladder!!!)

                            I am currently in total remission!!! :woohoo:


                            Past meds;

                            Elavil
                            Percocet
                            Dilaudid
                            Elmiron
                            Pyridium (never helped at all...)
                            Detrol (doesn`t do anything anymore)
                            Bactrim (10+ times)
                            Keflex (THE most useless antibiotic of all)
                            Macrobid (10+ times)
                            Levaquin (once)
                            Cipro (15+ times)
                            Rocephin (IV, shots) (8 times that I can remember.)
                            Darpaz

                            Procedures;

                            Ovarian cyst removal 04`(seemed to start everything)
                            Cystoscopy Nov 09` dx`d with IC


                            "Well I looked my demons in the eyes,
                            laid bare my chest, said "Do your best, destroy me.
                            You see, I've been to hell and back so many times,
                            I must admit you kind of bore me."
                            There's a lot of things that can kill a man,
                            there's a lot of ways to die,
                            yes and, some already did that walked beside me.
                            There's a lot of things I don't understand,
                            why so many people lie.
                            Its the hurt I hide that fuels the fire inside me.
                            Will I always feel this way?
                            So empty, so estranged..."
                            ~Ray Lamontagne

                            Comment


                            • #29
                              MrsMack

                              Hey! I am so glad D mannose is working for you and everyone else using it. I have often wanted to try it, but I am afraid of flaring. Basecly I put as little in my body as I can pretty much JUST elmiron and the IC diet and I do ok.

                              My question, did you ever have flares before your period or during, or if you ate something acid? I have flares before (sometimes and sometimes not) and then on on my period have NO symptoms... I just dont understand that if it WAS a bacterial infection of any sort hiding or not that it could do this? I would think that if there was any bacteria at all that I would always have symptoms? Does any of this make sense?

                              I have been tested many times for bacteria and like you have always come out negative... I have even been tested for Ureaplasma too. (Never heard back what the results were). My Dr. has now ordered tests that are being sent away to a lab that ( I hope) will test for low grade hiding bacteria.I start peeing in a cup on mon and do that for three consecutive days, then send it away to a special lab. Has anyone else had a test like this?

                              Jenn
                              28 yrs old,

                              I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

                              What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

                              Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!



                              Me in my graduation gown!

                              Comment


                              • #30
                                Mrs.Mack, I am so happy you posted this. I have yeast issues along with uti almost every month. Frequently after intercourse.I was diagnosed with I.c. A year ago. Just ordered d mannose. Can't wait to see if it works for me. Very happy you are in remission.

                                Comment

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