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  • IC newly diagnosed

    Hi all! I have been researching like crazy this past month since becoming diagnosed with IC 4 weeks ago yesterday. I am only 28yrs old and my symptoms were sudden. I had a uti which we cleared up but I continued to have symptoms thereafter. I saw a urologist who did a bladder scan some other exams and another urine sample which was negative for any bacteria. She mentioned IC and gave me samples of supplements and pretty much that was it. My symptoms are frequent, urgency, extreme bladder pressure, urge Togo with little coming out, slow stream etc. no pain but the pressure is pretty comparable to pain! It's horrible!!! I had about 8 days full of these issues and it has lessened up some! I'm on desert harvest aloe which I was taking 3 a day but now I'm at 5 a day to see if that changes my symptoms. Even with the good days my frequency is still there not like before I was going 60 times a day!!! I have changed my diet and doing the elimination diet now. I got another flare this past Thursday again! No idea how but I'm miserable. Taking my Pyrdian as needed but that barely takes the edge off I still have the urge Togo to the loo. What helps you guys naturally with your symptoms? Any tips would be appreciated. I'm desperate and wanting to heal myself from the inside out! Thank you fellow warriors! 😁

  • #2
    Re: IC newly diagnosed

    One handy tool is the IC Diet app (available for purchase at the App Store)-a good way to double check what you are thinking of eating. Have you watched the videos on the IC forum about recent guidelines for treatment of IC? My uro suggested that if I were to try natural supplements such as DH Aloe and Cystoprotect that I try them one at a time,so I can tell which is actually helpful. Donna always suggests keeping a log of everything you eat and how you feel,so you can figure out what is your best IC diet. It is not unusual to find "safe" foods that are actually "trigger" foods for you,so it requires a bit of time to figure those things out! I know one of the videos mentioned that it is important to drink enough water,which is something I was avoiding,just to have less unpleasant peeing. Drinking enough water helped me quite a bit.You may learn that some activities will flare you(running,bicycling,or?) As you learn to manage your IC,you may be able to add activities that were once intolerable.Stress management and getting enough sleep is helpful too. So-yoga or meditation can be helpful. Adapting to the idea of having IC is fairly stressful,so talking with a therapist can be helpful.I found that when I medicated my self for my hay fever (with over the counter antihistamines) my IC symptoms really settled down,which led my uro to prescribe hydroxyzine (a prescription antihistame). So it isn't "natural" , but it helps my IC symptoms a lot and my hay fever is much better too. You will find here on the forum that everyone's IC is different and finding the best treatment for you will take some time.you will get better! hugs,shorty

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    • #3
      Re: IC newly diagnosed

      I am cracking the code. L carnosine 500mg twice a day. Try within a couple hours of each other. I noticed eating meat calms symptoms, especially if i eat alot of carbs. Here's what I found. Along with other supplements that have helped me and WHY at the bottom!

      carnosine supplementation to help prevent damage from glucose
      carnosine also stops collagen cross linking which makes fibers less elastic
      carnoise chelates metal
      carnosine protects cells from acetaldehyde

      Acetaldehyde occurs naturally in coffee, bread, and ripe fruit,

      AGEs (advanced glycation end products) can induce crosslinking of collagen which can cause vascular stiffening and
      entrapment of low-density lipoprotein particles

      I know collagen has something to do with this, type 1 and 3 seemed to help, but i broke out in hives for a week.

      AGEs can bind to RAGE (receptor for advanced glycation end products) and cause oxidative stress as well as activation of inflammatory pathways in vascular endothelial cells

      (which according to a 2004 paper, is probably an important factor in IC,
      along with interluken 6 (IL6) and a few other things...


      RAGE, also called "AGER". Its name comes from its ability to bind advanced glycation endproducts (AGE), which include chiefly glycoproteins, the glycans of which have been modified non-enzymatically through the Maillard reaction.

      Does this have to do with the glycosaminoglycan (GAG), that makes up the bladder wall?

      "evidence suggests that intrinsic urothelial pathology has a role in the pathogenesis of IC."

      It might be worth trying b6 and bentofiamine, a form of b1 if carnosine is working primarly as an AGE reducer. (Ive tried both and they didnt seem to exacerbate symtpoms at least) and they reduce AGE's in endothelial cells... but havent been shown to do so in urothelial cells



      checkout the selfhacked website for ways to reduce mtor, il6, and stat3 inhibitors,

      one way to reduce mtor is to reduce protein.
      i know i had a horrible flare with leucine supplement , which is found in meat,, but removing meat you'd reduce carnosine intake as well since its found in meat. so its not a perfect science , if carnosine will work for you as well.


      the supplements ive listed below is a partial list, that seem to help.

      and inhibiting th17 immune system dominance, which he says overactivates histamine, which many of the ic network foods tend to release, and why hydroxyzine seems to work for some ( hydroxyzine hcl has helped me , but not like carnosine is today and with no side effects)




      some things that might help. x by things ive tried and i know or remember seem to help
      DECREASE IL-6
      carnosine xxxxxx
      milk thistle x
      rhodiola xx
      .extra virgin olive oil
      asprin xxx
      dim x
      choline , not other form of choline,. (cant remember)
      fish oil (minor effect)
      glycine x
      bromelain (found often with quercetin, quercetin might be better on its own or vice versa) xx
      ginko

      artemisinin (wormwood) xxx
      rla (r lipioc acid) or just alpha lipioc acid(although i get side effects from that form)
      astaxanthin-...(minor effect)
      dandelion xx
      quercetin xxx
      allegra x

      a few TH17 INHIBITORS

      curcumin (concetrnated form can work well sometimes) xxx
      l salvarius l plantarum (planatarum worked well on its own, but caused stomach upset, mixed strains of probiotics can increase histamine, ,or cause too much acid, like acidopholus and can make things worse for me )

      cinnamon
      asprin xxx
      r lipioc acid
      artemisinin xxx
      licorice works well sometimes xxxx
      ginger ( iget mixed results)
      black cumin seed (havent tried but he says its great)
      Last edited by taosurf; 04-08-2017, 05:41 PM. Reason: formatting

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      • #4
        Re: IC newly diagnosed

        Please talk with your doctors before trying supplements, especially if you are on any prescription medications. I know they can sound totally harmless, but I have a good friend whose mother ended up in the hospital following too much licorice supplement --- I'm restricted on aspirin, not familiar with side effects of the other supplements mentioned --- it's just better to play it safe.

        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

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        • #5
          Re: IC newly diagnosed

          I'm not on any western medicines! Only natural supplements and I'm taking extra strength desert harvest in which my urologist recommended so far so good and I did up my dose to 5 a day instead of 3 a day. My flare seems to have settled down a lot and I am going to start the alkaline diet of course not adding in the acidic foods etc.

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          • #6
            Re: IC newly diagnosed

            Thank you for all this wonderful information! I'll look into the app I hope your feeling better. This disease is so tricky and bipolar lol ecerydays a different day. Im normal today but sure wasn't yesterday! Just crazy.,

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            • #7
              Re: IC newly diagnosed

              Wow! I'm going to research all of these tonight and discuss with my uro! She's all about the natural approach too! Are you currently in remission?

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