Announcement

Collapse
No announcement yet.

Why supplements can cause very different reactions in people

Collapse
This is a sticky topic.
X
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Why supplements can cause very different reactions in people

    Hey folks,

    I notice that we're having quite a bit of discussions from patients who noticing that they seem to be "flaring" from various supplements. This, I'm afraid, is the conundrum of the IC bladder. Wounds in the bladder can be exquisitely sensitive (i.e. nerves easily stimulated, etc. etc.) ... and combined with our own unique sensitivities, allergies, etc.. it's impossible for anyone to say if it's going to help your bladder or flare it in advance. The same as true for IC medications in general. We're just too individual in our tolerance to various foods and meds to make broad general statements unless, of course, a large research study has been conducted. Then they can atleast make some general statements about tolerance, etc.

    If you want to explore using supplements to help your bladder symptoms, please be aware that there are both successes and failures with every supplement out there. One persons experience may not be yours and vice versa and, ultimately, it's about seeing if your body can tolerate any medication and/or supplement well.

    Samples are no longer available!
    Last edited by icnmgrjill; 08-03-2015, 05:18 PM.
    Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

    Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

    Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.







  • #2
    its true that body of every individual differ in its capacity and survival. some of them are more sensitive towards any particular thing while some are very much less....
    .

    Comment


    • #3
      Re: Why supplements can cause very different reactions in people

      Does anyone have trouble taking Vitamin D? I HAVE TRIED 4 different kinds with minimal ingredients, still have burning.

      Comment


      • #4
        Re: Why supplements can cause very different reactions in people

        Originally posted by Liza Jane View Post
        Does anyone have trouble taking Vitamin D? I HAVE TRIED 4 different kinds with minimal ingredients, still have burning.
        I've taken D for several years with no problem. Have you had a test to confirm that you need to take it? It can be difficult to get enough vitamin D since we need to protect ourselves from the sun ::::sigh:::: sometimes it seems we can't win. I live in Oregon, where we don't get enough sunshine in winter.

        Hugs,
        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


        • #5
          Re: Why supplements can cause very different reactions in people

          Cysto Renew supplies seem to have dried up. Hope this is just a blip.

          Comment


          • #6
            Re: Why supplements can cause very different reactions in people

            Interesting but frustrating too. I am confused how some labels state NO CITRUS yet the product is calcium CITRATE and magnesium CITRATE??? Any suggestions?? Thank you.

            Comment


            • #7
              Re: Why supplements can cause very different reactions in people

              Originally posted by sunlitclouds View Post
              Interesting but frustrating too. I am confused how some labels state NO CITRUS yet the product is calcium CITRATE and magnesium CITRATE??? Any suggestions?? Thank you.
              Citrates are not made with citric acid, they are actually a chemical reaction between a mineral and citric acid which when complexed is not acidic

              Comment


              • #8
                Re: Why supplements can cause very different reactions in people

                Thank you for your reply. But I am still cautious about trying calcium and magnesium citrate. I did notice that another person had a positive experience with her citrate supplement. Has anyone else had a positive experience with calcium or magnesium citrate??

                Comment


                • #9
                  Re: Why supplements can cause very different reactions in people

                  Yes. I take 1200 MG calcium citrate daily to balance oxylates. No problems at all.
                  Cheers, Cheryl

                  Current Treatments:
                  IC Diet
                  25mg Atarax
                  Vaginal Valium (as needed)
                  Pelvic Floor Therapy (1x/week)
                  Quarterly bladder instillations

                  Comment


                  • #10
                    Re: Why supplements can cause very different reactions in people

                    I am currently taking quite a few different all natural supplements. One for chronic migraines and one for pre menopausal symptoms. Both have at least 10 different herbs. Does anyone know if any particular herb or herbs irritate the bladder?

                    Comment


                    • #11
                      Re: Why supplements can cause very different reactions in people

                      You have to be very careful about supplements like this, especially if you are struggling currently with symptoms. Most IC patients simply cannot tolerate blended herbal compounds because atleast one ingredient is usually acidic and irritating. Rosehips, for example, are well known irritants.

                      The ingredients that are generally the best tolerated are those found in the supplements currently used by IC patients today: chondroitin sulfate (NOT sourced from shark fin which is a despicable industry), sodium hyalurate/hyaluronic acid (from chicken), quercetin (not derived from citrus flavonoids) and aloe that has been correctly processed to remove ingredients that can cause bowel issues. I think Desert Harvest Aloe makes the best aloe.

                      But, in general, when I'm providing IC Coaching, I usually suggest stopping all combination supplements for a couple of weeks to give the bladder some time to calm down and then, perhaps, start with one ingredient at a time. At any sign that symptoms are beginning to return, it should be stopped.

                      Jill
                      Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

                      Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

                      Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.






                      Comment


                      • #12
                        Re: Why supplements can cause very different reactions in people

                        I cannot tolerate any oral vitamin D, magnesium, C or B12. They all throw me into a horrible flare.

                        My Dr has me do a once per week nasal spray for B12 because I became very B12 deficient. (Nascobol...it is only available by prescription). I use a topical 100% magnesium oil that delivers it via the skin which I buy on Amazon. These nasal & skin deliveries work because my Dr tested my magnesium levels before/after & they improved alot.

                        Vit D I try to get from the sun when I can, in moderation. Or through foods high in D.

                        Hope these tips help.
                        Jeannie
                        "She stood in the storm, and when the wind did not blow her way, she adjusted her sails." -Unkown

                        IBS/Endometriosis/Prolasped Uterus/CFS, ME/Fibromyalgia/Refractory IC/Celiac Disease/Autonomic Nervous System Dysfunction (Immune System issues) B12, Vit D deficiencies

                        Many surgeries over the years, mainly: Total hysterectomy/Gallbladder & Thyroid removed

                        Treatments: Tried all except Interstim, Botox injections and bladder removal. I've never been in remission.

                        Daily-Prednisone steroid down to 3mg long-term, Demerol 50mg, Diazepam 2mg
                        As needed-Home TENS unit, AZO Standard, Marshmallow Root Capsules, D Mannose powder, Prelief. STRICT IC DIET or I'm bed ridden. I'm under the care of a Pain Management Clinic.

                        Was on SS Disability for IC 2004-2006. Back to work 10 years. Annnnd-My bod gave out. Back on Disability as of Aug 2016. WE NEED A CURE!!

                        Comment


                        • #13
                          Re: Why supplements can cause very different reactions in people

                          I'm in Australia so never taken D as we get so much anyway from the sun. Haven't tried magnesium on it's own so couldn't say. My biggest ones are B group and C group really bad. I also find Cystoprotek bad????????
                          I really want to take a multi but they just kill me. Heading to medico this week for smear and blood tests so will see what I'm low in since I haven't taken any multis for over a year now. You wouldn't think either D or Mg to be inflammatory. Could it be something else by coincidence?
                          xxx
                          UTI 3/2015
                          IC ,PFD
                          prescribed meds: Endep 60mg, Elmiron 400mg, BC. Enablex 7.5mg.

                          Supplements: Chitomur peptide, colostrum, Echinacea, liver detox swisse, calcium citrate, glucosamine, Psyllium Husk.

                          Daily diet: Breakkie- oats with chia seeds and no fat milk. Post workout-turkey breast with mixed veggies. Lunch-raw green soup with rye roll and handful of peanuts/almonds. Dinner- changes but meat and veg. Dessert-banana and sugar free custard (homemade) or banana and apple bake with almonds cinnamon and honey with a dollop of coconut cream.


                          Tried: tramadol, cystoprotek, multi right, diazepam, vesicare, Ditropan, mirabegron, Flomax, lyrica, progesterone.

                          Comment


                          • #14
                            Re: Why supplements can cause very different reactions in people

                            I agree! B's & C's are worst offenders for some of us.

                            I know for sure magnesium wasn't a coincidence because I tested it more than once, while on a very strict IC diet. The last time I tried it, I wound up in the ER for pain control. Hideous! D's are not the worst but do flare me as well.

                            Aaarrrggghhh - Hello in Australia from Tennessee! Good luck with your tests & let us know how they turn out!

                            Lastly, just a tip for D's...I eat salmon baked at home often & it's high in D.
                            I've read Cod Liver oil capsules or liquid are VERY high in D, but haven't tested it yet for reaction. I'd probably try the straight liquid &....from what I recall cod liver oil helps w/constipation too. (For anyone suffering from it due to pain meds etc)

                            Broccoli is loaded w/C + other great nutrients so I eat it almost daily.

                            I'm not a nutritionist or a Dr, so be sure to check with one when in doubt. I am just a Professional Pee-er. HAHA!!!!
                            Jeannie
                            "She stood in the storm, and when the wind did not blow her way, she adjusted her sails." -Unkown

                            IBS/Endometriosis/Prolasped Uterus/CFS, ME/Fibromyalgia/Refractory IC/Celiac Disease/Autonomic Nervous System Dysfunction (Immune System issues) B12, Vit D deficiencies

                            Many surgeries over the years, mainly: Total hysterectomy/Gallbladder & Thyroid removed

                            Treatments: Tried all except Interstim, Botox injections and bladder removal. I've never been in remission.

                            Daily-Prednisone steroid down to 3mg long-term, Demerol 50mg, Diazepam 2mg
                            As needed-Home TENS unit, AZO Standard, Marshmallow Root Capsules, D Mannose powder, Prelief. STRICT IC DIET or I'm bed ridden. I'm under the care of a Pain Management Clinic.

                            Was on SS Disability for IC 2004-2006. Back to work 10 years. Annnnd-My bod gave out. Back on Disability as of Aug 2016. WE NEED A CURE!!

                            Comment


                            • #15
                              Re: Why supplements can cause very different reactions in people

                              I saw on TV that mushrooms produce their own vitamin D. If you leave them in the sun for an hour they become a source of vitamin D.

                              Comment

                              Working...
                              X