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Guinea pigging some supplements here..

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  • #1

    Guinea pigging some supplements here..

    So, with my symptoms not abating and after a serious bout of depression and anxiety, I decided to get really serious: new urogyn, pelvic floor therapy, psychologist, the whole shebang. Also seeing a nutritionist who does supplement counseling for people with chronic illness. She's treating me as if IC were an inflammatory autoimmune disease (not proven, but much interesting info that at least suggests links.)

    So here's the new regimen in addition to the usual IC treatments (Elmiron, Elavil, CystaQ)

    Zone Labs liquid fish oil (starting at 1 gram per day) - kept in the freezer and with a blueberry juice chaser - blergh!
    Alpha Lipoic Acid (600 mg 2x per day)
    Acetyl L Carnitine (500 mg 2x per day)
    EGCG (700 mg 2x per day) - the active component in green tea - boy am I nervous about this one!
    10 mg Zyrtec per day

    I'm going to start one at a time to see what the body's reaction is. This could be unintentionally hilarious (GI upset), aggravating (allergic reaction), or just plain a waste of money. But I'm at the point physically and mentally where I need to be proactive. I'll post updates with any highlights - please note that your mileage may seriously vary and you shouldn't start anything without at least running it by your doc.
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  • #2
    I'm looking forward to see how each one of these goes for you. I'm always looking for new supplements.
    Current Meds: Nortriptyline (35 mg), Hydroxyzine (50 mg), Cephalexin (250 mg before sexual activity)
    As Needed: Prelief, AZO, Evian Water, Aleve

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    • #3
      Good luck with it, I pray it will help you.
      I am also always looking for new supplements. I know we are all different but I also think that perhaps we have some things in common, so perhaps some things that work for someone, can work for me as well. So I am always looking for new things
      ***************************************
      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

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      • #4
        Update: the art of liquid fish oil

        Alright, so far I've incorporated the zyrtec, the fish oil, the alpha lipoic acid, and the acetyl-l-carnitine. Too early to give a read out on most, and persistent flares led me to try my first instill - which really helped (!) so I'll have to see about the flare potential of some of these things. Still waiting to work the EGCG in. However, I think I have enough to say about the liquid fish oil so far:

        ZoneDiet Omega Rx liquid fish oil

        Pros: very high grade product; liquid allows you to easily customize dose up and down; much more concentrated that the gel caps; I have noticed after 1/2 teaspoon per morning, I have more daytime energy. Am now ramping up to 1 teaspoon per morning.

        Cons: NOT cheap. You are drinking a fish - on purpose - and it tastes like it.

        The art of drinking a fish:

        1. Take it in the morning, not the night. Keep the bottle in the freezer. That reduces the taste and apparently helps limits initial GI side effects.

        2. Use a metal or glass measuring device (plastic retains odors). Zone diets sells quite a nice graduated shot glass.

        3. Pour dose. HOLD BREATH. Put the dose at the front of your mouth and swallow in one go.

        4. Keep holding your breath! Immediately chase it with 100% blueberry juice or another strong tasting beverage you can tolerate.

        5. Breathe. Eat something either before or sometime after. If things move faster than preferred (ahem), take it on a full stomach. I only had this problem for the first day or two.

        6. Try not to spill any on your skin or you'll have fishy fingers for the day!

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        • #5
          I would be extremely wary about the green tea.

          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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          • #6
            Donna: Word.

            Heh. I did say I was the most nervous about the EGCG. Listen to your gut before you have to listen to your bladder! After 7 days of the green tea extract my frequency and pain has gone WAY up, so I'm stopping that sucker.

            "Sometimes the purpose of your life is to be a warning to others."

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            • #7
              Two month result

              After two months of the supplements, I can give a preliminary verdict. My criteria is: does the supplement appear to increase my quality of life in comparison with the cost/time/side effects, etc.

              Omega Rx Fish Oil: Yes
              Alpha Lipoic Acid: Not sure, but cheap enough to keep trying
              Acetyl L Carnitine: Ditto, but a bit more expensive, so the bar will be higher on this one
              EGCG: God, no

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