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  • Daniel chapter one supplemements?

    Has anyone used these products and what was your experience? I had a friend that kept insisting I call them and did, and they swear like many companies they had have a lot of sucess with IC patients.

    Truthfully what I need help with the most is the chronic kidney infection etc.?
    If like so many things they would help I would try it but I am very skeptical for the very reasons Jill listed on the previous post, so I would like to hear anyone else experience with them if possible!

    Thanks in advance,
    Shelly
    Shelly Matthewson
    Private Researcher
    IC Support Group Leader
    Director of MOARK Interstitial Cystitis
    www.moarkic.com

    Also diagnosed with Meduallary Sponge Kidney Disease, with many kidney stones and chronic infection, Pelvic Congestion Syndrome, and
    PFD

    "And we know that all things work together for good to them that love God, to them who are the called according to His purpose." Romans 8:28

    In His hands even IC (MSK, PCS etc.) can be a blessing and an opportunity to serve Him by help others. It is my heart to help others and to network patients and medical practitioners in Missouri and Arkansas!!

  • #2
    Just remember that if it sounds too good to be true, it probably is! Some companies will tell you anything to get you to buy a product. When I was first diagnosed, I suckered in on anything anybody said would or might help. The only result was a full cabinet and an empty wallet! Now I work with my doctor.

    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


    • #3
      AMEN DONNA!!!

      Before I found my current uro, and really began being a "good" patient with the meds, IC diet, etc....I bought everything that was recommended for the IC symptoms from websites, health food stores, etc. During spring cleaning this year, I must have thrown out 20 bottles of old expired supplements and such that promised a "cure", but certainly were just a waste of $$$$$$

      Wiser, and a bit poorer, I look back on how desparate I was to have a quick fix, and that now I can realize that treating this disease takes patience, prayer and a great doctor-patient relationship....oh, and of COURSE these message boards!

      Hugs,
      Beth
      IC diagnosis 1999
      Meds: Elmiron
      hydroxyzine hcl
      DMSO as needed
      valium as needed
      librax 3x day

      TENS therapy



      Thanks to all on the boards - YOU have helped more than I can say!



      A person's true wealth is the good he or she does in the world.

      Comment


      • #4
        I am kind of avoiding those things right now because it seems easier and cheaper to stick to what my Doctor wants to try. That is now that I found a decent IC Doctor!
        Hopefully someone will let you know their experience with those products soon. I honestly have never heard of them.
        Rachel
        DX's:
        IC; PFD; possible Fibromyalgia; IBS;

        Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

        I've Tried:
        three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
        Currently using:
        Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
        Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
        I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!

        Comment


        • #5
          Thanks guys, and I agree with all of you, this is part of why I posted my question. Everyone has an "answer" ör something you should do for your IC.
          Though I have found many helpful supplements, (dessert harvest aloe, MSM, St. John's Wort, even my Rife machine etc.) I too have wasted money on useless products etc. I also have to use many IC standard IC treatments, instills, hydroxizine, etc. and with all these things and the help here I can get my pain under control.

          Because I also live with a difficult chronic infection,(which keeps my IC irritated!) that my doctor and I are running out of solutions for, i was and am looking into some alternatives..,(As I've mentioned before both of my kidneys are filled with stones and we feel I have developed a biofilm infection in those stones..., I live on antibiotic and have now had to doubel them just to control the kidney pain.) The next step is IV's yet my doctor and I both realize this is a endless process unless we can penetrate those stones and etc.

          BUT, I really want to check them out. Truthfully the man is very haughtly and that turns me right off. But the products themselves do carry some good combinations of herbs etc. i am jsut not sure I trust the company...,

          I have e-mailed them a list of questions that will be interesting, IF they answer them. Including how they back their products and actually have patients to talk to etc....,

          I am also considering starting a support group in this area, so want to know and have answers for others, even if it is to know ahead of time some of the things to avoid!

          I truly appreciate this site because being able to ask other has often kept me from some of those dangerous products etc.


          Thanks again fro your help and I truly would like to hear form anyone good or bad that have tired these. Since they swear they've helped many IC patient, someone on here should have heard of them! IF they are honest!

          Thanks again,
          Shelly
          Shelly Matthewson
          Private Researcher
          IC Support Group Leader
          Director of MOARK Interstitial Cystitis
          www.moarkic.com

          Also diagnosed with Meduallary Sponge Kidney Disease, with many kidney stones and chronic infection, Pelvic Congestion Syndrome, and
          PFD

          "And we know that all things work together for good to them that love God, to them who are the called according to His purpose." Romans 8:28

          In His hands even IC (MSK, PCS etc.) can be a blessing and an opportunity to serve Him by help others. It is my heart to help others and to network patients and medical practitioners in Missouri and Arkansas!!

          Comment


          • #6
            Shelly, I am going to email my sister's boyfriend and see if he has any ideas on products for chronic kidney infectones, stones, etc. He actually has a donated kidney and is on cellcept (which has been great for me b/c my Doctor has brought up putting me in the trial) He posts on an online support group for people with kidney issues and they might know what you are going through, or be able to suggest something. I'll ask him for the website if you are interested.
            Rachel
            DX's:
            IC; PFD; possible Fibromyalgia; IBS;

            Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

            I've Tried:
            three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
            Currently using:
            Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
            Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
            I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!

            Comment


            • #7
              I would apprecaite it. I have Meduallary Sponge Kidney Disease, (along with IC) Mnay people with MSk also struggle with the chronic infection and this what causes my stones. (I have been amazed at the number of MSK patients with IC and have been able to reccomemend this site to them!) The problem is 10 years ago, half way through a scope for a big stone, they realized the instruments were not sterile. I got a very resist pseudomonas infection that was not properly treated! I assumed all my pain was from having children and all the stones untill I could not longer handle it alone...,

              Just wanted to give you the "rest of the story" before you e-mail him!

              My doctor and I have spent many hours searching for solutions. We've found lots of things that help but inevitably the kidney pain etc. returns!
              thanks for your help!


              Shelly
              Shelly Matthewson
              Private Researcher
              IC Support Group Leader
              Director of MOARK Interstitial Cystitis
              www.moarkic.com

              Also diagnosed with Meduallary Sponge Kidney Disease, with many kidney stones and chronic infection, Pelvic Congestion Syndrome, and
              PFD

              "And we know that all things work together for good to them that love God, to them who are the called according to His purpose." Romans 8:28

              In His hands even IC (MSK, PCS etc.) can be a blessing and an opportunity to serve Him by help others. It is my heart to help others and to network patients and medical practitioners in Missouri and Arkansas!!

              Comment


              • #8
                Hi Shelly, I emailed him today and he did a little research. I'll PM you his reponse and his email address. He has chrnoic kidney disease that has led to renal fialure (he has two failed kidneys and a third donated one that is the only one working right now) He has alot of knowledge on kidney issues and may be able to point you somewhere in the right direction. He said to beware of alot of these types of places, but I don't want to bash any one company here, so I will just PM what his opinion was.
                Sorry I couldn't be more helpful...
                Rachel
                DX's:
                IC; PFD; possible Fibromyalgia; IBS;

                Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

                I've Tried:
                three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
                Currently using:
                Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
                Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
                I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!

                Comment

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