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  • #46
    Hmm so I'm guessing this won't help for those of us that don't have any infection/never had an infection?
    21 years old
    dx: severe OAB, mild/moderate IC, depression, PTSD, agoraphobia, chronic fatigue, IBS, peripheral neuropathy

    ♥ looking for a way or medication to help stop spasms ♥

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    • #47
      If this theory about the bacteria releasing from the bladder lining to feed on the mannose sugar is correct, we should be able to detect this bacteria from a urine culture.

      I'm not saying that the d-mannose doesnt work in relieving your IC symptoms, I'm just suggesting that there may be another mode of action other than the one hypothecized.

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      • #48
        Hi Purpleviolet~
        In responce to part of your question on Gluten. My Mother has just been recently diagnosed as gluten intollerant, yet Gliadin she was not. Both Gluten and Gliadin go hand in hand when it comes to wheat. Best to be tested for sure and for both. Mom has been advised to stear clear to Gluten for at least 6 months while the bladder tries to repair itself. Hope this helps, Carolyn

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        • #49
          Hi, great to hear - I wonder if mine (one of my many theorys!) is UTI that has somehow managed to get into my skin :/ anyway, as it is sugar based and I find sugar to be a big problem to me, would you say it is a concern or is it a different??

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          • #50
            I've been following this thread, and I've just bought some D-Mannose today. I'm hoping for the best, as my IC (in my opinion) has been caused by constant UTIs that weren't treated properly.
            And my recent flare was caused by a UTI....

            Fingers crossed!

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            • #51
              Originally posted by Rakkaus-pakkaus View Post
              I've been following this thread, and I've just bought some D-Mannose today. I'm hoping for the best, as my IC (in my opinion) has been caused by constant UTIs that weren't treated properly.
              And my recent flare was caused by a UTI....

              Fingers crossed!
              I hope that this works for you.The D-mannose seemed to help, but I didn't feel "almost normal" til taking antibiotics daily. I tried the natural stuff for almost 2 yrs. after that I am pretty much normal when taking antibiotics daily. I try every once in a while to get off of them but almost immediately get a uti.

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              • #52
                I am wondering if you can take D-Mannose with other medicines? I take Elmiron, Plaquenil, BC and prescription antacids.
                I just responded to another thread on D-Mannose, but trying to find out more about it and any recent successes with it.
                I have had IC since 2009 and really have had it under control and felt well except when I eat too much of a trigger food or drink. Just over the last month I have had a hard time getting rid of a month long flare - Ugh! I am hoping not to have to start instills again. I have been lucky enough to not have any for a good 2 yrs. Would love if D-mannose could help me get back on track!!
                It is so true that when many of us feel well we aren't on here much and return when things get bad again... just a reminder that really so many people do feel well and manage their IC well. I always needed encouragement that things can get better when I first found this great site - I know I will again, just might take some time.
                Hope to hear some good things about D-Mannose! Thanks!
                Holly
                49 year old SAHM with 4 great girls and hubby.

                Symptoms started 1/09.
                Officially diagnosed 4/09.
                Symptoms are totally pain, very little frequency.
                Diagnosed with Sjogrens 9/09
                Diagnosed with mild gastritis, GERD. Chronic Heartburn

                Current Meds.
                Quit Elmiron after 4 yrs
                Previousy had instills 6/09-2/10 and a few after that
                Started PT 12/09 - a great help too!
                IC Diet - an unfortunate must!
                Plaquenil (for Sjogrens)
                Prilosec
                Iron pills as tolerated due to iron deficiency

                Doing much better than my first year of diagnosis, but still have to carefully watch my diet if I want to stay out of pain.

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                • #53
                  It would only make sense to take D-mannose if you think your IC symptoms are caused by a lingering or undetectable bladder infection. D-mannose is just a sugar (like sucrose, fructose, glucose etc) that apparently arrives in the bladder without being broken down too much. The idea is that the bacteria are attracted to it and leave the bladder lining/walls to eat it, and then are flushed out along with the d-mannose when you pee. I don't think there would be problems with any meds.
                  IC symptoms since Dec. 12 2010 after confirmed bladder infection "never went away." Recently also diagnosed with PCOS, piriformis syndrome, and pelvic floor dysfunction, sinus issues. I was in great health before fall 2010.
                  Current medications: citalopram 40 mg, valium 2.5 mgs a night, lidocaine patch (for back pain), Prelief
                  Therapies tried or continuing: stretches, walks, baths, internal massage, physical therapy, IC diet, IF unit, heating pad, mindfulness based stress reduction classes, cognitive therapy, books on IC and pelvic pain...

                  Drugs Tried: the urinary analgesics, 4 kinds of muscle relaxants (including in suppository form), hydroxyzine, 3 kinds of TCA's, lyrica, cymbalta, 6 months elmiron, vesicare, antibiotics, prednisone (after sinus surgery), NSAIDS...
                  Supplements: over 20 herbs and supplements, including regimens from TCM practitioner and a naturopathic MD
                  Intravesical/Surgical: 3 instills of Uracyst, 2 “rescue instills” lidocaine, bicarb, elmiron; 1 self-instill of marcaine, a steroid, bicarb and heparin; 1 hydrodistention and capsaicin instill (made me worse, still recovering two months later...)
                  Other: Acupuncture treatments, magnets (LOL), Anti-Candida Diet (2 months), Wheat free diet, water pH

                  Comment


                  • #54
                    Originally posted by Jinny Jean View Post
                    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?
                    If it is bacteria having flares just before your period would make sense. I say this because your immune system lowers shortly after you ovulate around the time implantation would take place so that your immune system will not destroy a fertilized egg that is trying to implant.
                    Crissi
                    Married to my best friend for 17 years. Mom to 3 boys and 3 girls.

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                    • #55
                      Re: D Mannose

                      Originally posted by mmarsh View Post
                      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?
                      Hi Michelle,
                      I was reading your post from a long time ago and I was stunned to see that you started running in 2011 after you were diagnosed! I was a long distance runner and was devastated when diagnosed as I was told I would never be able to run again as it would be too painful and cause flares. Was this the case for you? You give me hope as running was a huge part of my life and I was a volunteer running coach in my town as well. I am looking to try D - Mannose and Slippery Elm next but the D- Mannose seems the best right now as I test possitive on and off all the time for UTI's
                      Any advice would be great.

                      Thanks,
                      Denise

                      Diagnosed in Oct. 30 2013
                      Myribetriq 50mg - 6 weeks
                      Magnesium
                      D3
                      DHA 8 - 3 weeks
                      Singulair 10mg - 1 week on this fingers crossed

                      Tried
                      Vesicare - retention
                      Toviaz - Retention very bad 14hrs no pee but horrible urge
                      Detrol LA - horrible side effects
                      Marshmallow root tea and pills - increased urgency

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                      • #56
                        Re: D Mannose

                        Originally posted by Skigurl View Post
                        I was a long distance runner and was devastated when diagnosed as I was told I would never be able to run again as it would be too painful and cause flares. Was this the case for you? You give me hope as running was a huge part of my life and I was a volunteer running coach in my town as well.
                        I'm an occasional runner, and I have no problem with running causing flares! I can't run if I'm already flaring because it's too painful, but days when I am feeling good, it never causes a flare. I know everyone is different, but I thought I would share my experiences. Hope this helps!
                        Medications and Supplements:
                        BladderQ
                        Pyridium
                        D-Mannose powder
                        Cranmax

                        Lifestyle:
                        Lacto-ovo-vegetarian and IC diet
                        Meditation
                        Positive mental attitude!

                        Comment


                        • #57
                          Re: D Mannose

                          Originally posted by soymilk View Post
                          I'm an occasional runner, and I have no problem with running causing flares! I can't run if I'm already flaring because it's too painful, but days when I am feeling good, it never causes a flare. I know everyone is different, but I thought I would share my experiences. Hope this helps!
                          Hi Soymilk, thanks for responding! It gives me great hope that I will be able to return to running once I can get my symptoms under control.
                          I notice you are not on the many medications that so many of us are on, does that mean yours is a mild case? What are your main symptoms? mine are U/F and bad pressure. The burning I have under control and the U/F are slowly getting better but the pressure has become the hardest to deal with and I can't imagine running like this as it feels like everything is going to fall out :0(






                          Myribetriq 50mg
                          Singulair 10mg @ bed
                          magnesium 500mg
                          D3 2000UI
                          Omega 3
                          Probiotic
                          D-Mannose
                          DHA x 8
                          Slippery Elm x4

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                          • #58
                            Re: D Mannose

                            Hi, I started d mannose yesterday and I was burning all day. Is this normal? and should I carry on? jo

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                            • #59
                              Re: D Mannose

                              Hi Seahorse,

                              I did not ever experience burning, some others have mentioned that on other posts elsewhere but I myself had no side effects although for me I'm fighting multiple bacteria so it was useless for my infection....did not get that figured out until after I went through 3 bottles @ 40.00 each :o( Good luck!

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                              • #60
                                Re: D Mannose

                                I just ordered this book and it is fantastic - "Herbal Antibiotics Natural Alternatives for treating drug-resistant bacteria" by Stephen Harrod Buhner. You will be shocked and you will educated. This guy really knows what he is talking about. You will learn a lot about bacteria and how they easily outsmart any single chemical pharmaceutical (unlike a plant which has hundreds of compounds and has had hundreds of thousands of years to evolve learning how to protect itself and likewise the bacteria which have learned how to adapt so quickly to a chemical by pumping it out of itself but the plant can inhibit that). Anyway, this is a fascinating book and if you are struggling with infections take this book to your doctor! Trust me, it won't be long before doctors are turning to plant medicine as there already is bacteria that is resistant to all antibiotics. He also wrote a book about herbal preparations to combat viruses.
                                I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.

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