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  • #16
    I get the Vitamin World brand that they carry. I'm having a little trouble with some burning tonight, but since I've starting taking it a week ago, it seems to be easing up. I know it usually takes a few weeks to really get the effect of any pill, so hopefully after another week it will make things much better. I've been flaring for almost two weeks. The first flare since I had my hydro in mid-April. I'm just so tired of going to doctors all the time and all the bills. If I can find a natural way to treat this along with the meds, I'm happy with that.

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    • #17
      I ended up getting some today, I have taken two so far.. not sure if its helping yet, but I know I am still flaring from the antibiotics... I hope this flare ends soon its really getting me down I was taking Quercitan as well, but I think I will hold off on that and try the colostrum for a little while. I wanna know what is helping or not.
      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


      • #18
        pycnogenol

        I remember reading that pycnogenol (french maritime pine bark) might be good for IC, so I am going to get some soon along with colostrum. The foreign "elmiron" I have been taking has not helped me. Quite shocking to me that elmiron did not work after 8 months of taking it so I'm back to looking at alternative.
        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.

        Comment


        • #19
          Sometimes elmiron can take SOO long! I have heard people say it didnt work for them for a year or more but when it did it was soo worth it. Maby keep taking the elmiron a little longer? I know it must be so frustrating, im not sure if its working for me and im only 3 month in! Im also getting seriously impatient Just wanted to chime in and say maby dont give it up just yet

          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


          • #20
            It will be two weeks Friday that I started taking the colostrum. Not sure if it's starting to work or if it's the cortizone shot in the foot for an injury, but I am feeling a little bit better. My family doc isn't in this week and the other doctors there said to go back to my uro for help. Screw that!!! She's done nothing but load me up on drugs and had me spend thousands of dollars on a cysto/hydro that only helped for about a month. If I continue to feel like crap, I'm going to try a holistic approach.

            Comment


            • #21
              Brand

              I don't think the brand really matters, but the Source Naturals brand is pretty cheap on Amazon. The important thing is to keep taking it - LOTS of it. 3000mg/day! And yes, definitely let your doctors know what you're up to.
              Exposure to an unclean hot tub 2-17-07 FIRST UTI
              (Got ringworm-like sores from it before)
              (Someone else got what looked like 'eye herpes')
              (My husband got an ear infection. We were all just sitting there!)
              SYMPTOMS: Severe Urgency/Frequency for 18 months, food sensitivity, widespread nerve pains (random and everywhere), deep bladder pain that developed into flares at 4 months. Completely unreasonable diet sensitivity.
              TESTS: Nothing showed in urine cultures, CT scan, Cystoscopy, Lumbar puncture, back and brain MRIs, EMG tests.
              Hydrodistension Surgery/Biopsy showed minor glomerulations, inflammatory and mast cells, and a rare eosinophil. Blood tests show elevated ANA.
              CONFUSED: My hands and feet started falling asleep. I got twitching nerves or muscles everywhere. I started having concentration and memory problems, vision problems, then fatigue and chronic migraines. Fibromyalgia diagnosed, SSDI disability awarded at 4 years, then gone at 7 years. Won the appeal. IBS and esophagus spasms at 6 years.
              MEDICATIONS: Marcaine/Heparin/Sodium Bicarb instills, Lyrica, Nortriptyline, Uribel. Paxil and Trazadone from before. Painkillers as needed. Supplements include CystoProtek, DH Aloe, Colostrum.
              PREVIOUS CONDITIONS: Sudden onset of double vision, Paxil Discontinuation Syndrome, PTSD

              Comment


              • #22
                Colostrum flared me... Should I keep taking it? Will it eventually not flare me? I heard it was a cleanser too so that could be why at first but then it dies down and helps?

                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


                • #23
                  Wow..my first thought here is that something else must have flared you. I flare from everything - I'm super diet sensitive and a little adrenaline will get me every time. I even flare from Fish Oil capsules. But colostrum is just milk, right? I've never flared from it. But we're all different...anything could happen.
                  Exposure to an unclean hot tub 2-17-07 FIRST UTI
                  (Got ringworm-like sores from it before)
                  (Someone else got what looked like 'eye herpes')
                  (My husband got an ear infection. We were all just sitting there!)
                  SYMPTOMS: Severe Urgency/Frequency for 18 months, food sensitivity, widespread nerve pains (random and everywhere), deep bladder pain that developed into flares at 4 months. Completely unreasonable diet sensitivity.
                  TESTS: Nothing showed in urine cultures, CT scan, Cystoscopy, Lumbar puncture, back and brain MRIs, EMG tests.
                  Hydrodistension Surgery/Biopsy showed minor glomerulations, inflammatory and mast cells, and a rare eosinophil. Blood tests show elevated ANA.
                  CONFUSED: My hands and feet started falling asleep. I got twitching nerves or muscles everywhere. I started having concentration and memory problems, vision problems, then fatigue and chronic migraines. Fibromyalgia diagnosed, SSDI disability awarded at 4 years, then gone at 7 years. Won the appeal. IBS and esophagus spasms at 6 years.
                  MEDICATIONS: Marcaine/Heparin/Sodium Bicarb instills, Lyrica, Nortriptyline, Uribel. Paxil and Trazadone from before. Painkillers as needed. Supplements include CystoProtek, DH Aloe, Colostrum.
                  PREVIOUS CONDITIONS: Sudden onset of double vision, Paxil Discontinuation Syndrome, PTSD

                  Comment


                  • #24
                    Colostrum is a form of milk produced by the mammary glands of mammals in late pregnancy. Most species will generate colostrum just prior to giving birth.

                    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


                    • #25
                      I am also trying colostrum but not sure if it is it what is causing my u/f badly right now. I am lacto intolerant and I got kosher colostrum plus from Symbiotics which should be ok for those who want to have it lacto free. So far I worked up to 4 in a day (around 2000 mg) It is said that we should slowly work up the dose. I pray to God that this is not yet another thing that doesn´t work for me while hearing good reports from others.

                      Jenn - how much do you take? Are you perhaps lacto intolerant? If so, it might be possible to flare if you take "normal" colostrum. If you are not then perhaps you started with too high dose?
                      I don´t know, I am in similar boat trying to figure it out what the heck can I take if anything at all.
                      ***************************************
                      I am not an English native.
                      ***************************************
                      I am starting with raw food diet, juices and green smoothies and salads. Nothing else (rx meds and holistic things like cystoprotek, IC aloe vera) helps with my frequency, urgency and burning. I was also tested and I am gluten sensitive, lactose intolerant, few other food allergies, so all in all it made perfect sense to try go "raw". Fingers crossed

                      Right now I am on:
                      Vesicare 5 mg
                      Other stuff:
                      Herbal mix for bladder and kidneys
                      Herbal mix for adrenals
                      Fish Oil
                      Bladder Control
                      Colostrum
                      Probiotics

                      Comment


                      • #26
                        all these supplements!

                        My bad news is I had some vaginal bleeding which I need to have checked out due to the fact that I am way post menopausal. I'm going for an ultrasound, BUT since I stopped (generic) elmiron weeks ago because my IC was bad(which at some point I may start again) my IC has calmed down. Now, has it calmed down due to a new supplement I am taking - Adrenal Health (Gaia herbs) or due to manuka honey ( which at first I thought flared me), or is it the weather. I'm certainly stressed out about a number of issues. but the IC is a bit better lately.

                        Down the pipleline my list of supplements to add in resveratrol, pycnogenol,colustrum if I can afford all that. And something I read about on an osteoporosis blog called CALM (magnesium) helps people sleep, but I do take magnesium sometimes... If you have time you could soak in an epsom salt bath and that may have the same effect.
                        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.

                        Comment


                        • #27
                          It could have been that I took too much to start with.... I will try again, maby it wa someting else that flared me and it wa a coincidence. No I ahve no probs with milk either, sometimes I get a stomach ache if I eat TOO much but I think thats normal for everyone. I eat tons of ice cream all the time and never have a problem.....
                          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

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