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  • Cysta Q?

    How has this worked for you guys? I got the free bottle a couple of days ago and have been afraid to try it. I'm afraid it's going to flare me or afraid it's going to bother my stomach. Any input on how it has worked for those who have tried it would be appreciated.
    Christine



    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus

  • #2
    Christine,
    I have gotten me a bottle to but am affraid to try it..lol
    Hugs
    Ronda

    ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


    Link to Patient Handbook:
    http://www.ic-network.com/handbook/

    Diet Reference Sheet:
    http://www.ic-network.com/diet/icndi...tsheet0909.pdf

    Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

    Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

    Meds I have Tried:
    Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
    Lexapro< Bad reaction to this med!
    Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

    Dx With IC in Nov 2006 with Hydro/Cysto
    Hydro/Cysto Caused Bladder to Rupture.

    Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



    ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    Comment


    • #3
      LOL Ronda, you're too funny. I was brave and took one after breakfast this morning while at work. I still feel okay, so hopefully no ill effects.
      Christine



      I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
      1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
      2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
      I have tried every oral medication as well as rescue instills and DMSO.

      I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

      Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
      Also proud mom to the best Bullmastiff on earth, Claus

      Comment


      • #4
        Well I glad you are going to be the Giny Pig...hehehe Let me know how it does for you...
        Hugs
        Ronda

        ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


        Link to Patient Handbook:
        http://www.ic-network.com/handbook/

        Diet Reference Sheet:
        http://www.ic-network.com/diet/icndi...tsheet0909.pdf

        Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

        Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

        Meds I have Tried:
        Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
        Lexapro< Bad reaction to this med!
        Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

        Dx With IC in Nov 2006 with Hydro/Cysto
        Hydro/Cysto Caused Bladder to Rupture.

        Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



        ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

        Comment


        • #5
          hehe, I had a guina pig as a pet as a kid. I don't feel any different good or bad but I only took one so as not to over do it. My left ankle is swollen up for some reason though and I don't know why and I didn't twist it or anything. This happened last year for a couple of days and then it went away. I really don't want to make ANOTHER dr appt.
          Christine



          I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
          1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
          2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
          I have tried every oral medication as well as rescue instills and DMSO.

          I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

          Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
          Also proud mom to the best Bullmastiff on earth, Claus

          Comment


          • #6
            OHH so thats how you spell that little pigs name...lol

            You know you might have arthritis in it.. Or even gout.. Just a few things that would make it swell..
            Hugs
            Ronda

            ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


            Link to Patient Handbook:
            http://www.ic-network.com/handbook/

            Diet Reference Sheet:
            http://www.ic-network.com/diet/icndi...tsheet0909.pdf

            Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

            Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

            Meds I have Tried:
            Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
            Lexapro< Bad reaction to this med!
            Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

            Dx With IC in Nov 2006 with Hydro/Cysto
            Hydro/Cysto Caused Bladder to Rupture.

            Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



            ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

            Comment


            • #7
              Okay, I don't know about the artritis but gout? lol, I hope not. My leg is kinda sore and achy. I hate this crap, hubby even said, lord is something always wrong with you. YES!!!

              I guess I'll see what happens, I can't miss anymore time from work so if it's still like this tomorrow I guess I'll try to get an appt with the dr for saturday morning. Ugh
              Christine



              I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
              1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
              2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
              I have tried every oral medication as well as rescue instills and DMSO.

              I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

              Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
              Also proud mom to the best Bullmastiff on earth, Claus

              Comment


              • #8
                Hey I would not rule gout out.. There are more and more young people getting it.. But its more like a burning feeling with swelling..
                Hugs
                Ronda

                ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


                Link to Patient Handbook:
                http://www.ic-network.com/handbook/

                Diet Reference Sheet:
                http://www.ic-network.com/diet/icndi...tsheet0909.pdf

                Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

                Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

                Meds I have Tried:
                Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
                Lexapro< Bad reaction to this med!
                Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

                Dx With IC in Nov 2006 with Hydro/Cysto
                Hydro/Cysto Caused Bladder to Rupture.

                Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



                ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                Comment


                • #9
                  Tried Cysta-q

                  I have tried Cysta-q when I had a mild flare to add to my elmiron. I did eventually get better and it did not seem to bother me . I took it for about a month. The only thing that concerns me is that it has cranberry powder, and an enzyme from pineapple, and these things are supposed to be bad for IC. Next time I may try cysta protek. At least the ingredients in this make sense for ic patients. Both have an antioxident called querciten which is supposed to have anti-inflammatory effects, but you can buy querciten at your health food store for a fraction of the cost of these pricey supplements.

                  Comment


                  • #10
                    I like Cysta Q. I haven't noticed a difference changing from Cystoprotek to Cysta Q. I've switched a month ago or so.
                    I stopped Cystoprotek b/c it is rough on the stomach and I have a sensitive stomach. I used to freeze them but if on a given day I had to take a strong pain med like 2 Darvocet pills, I had to stop taking Cystoprotek b/c it was too much on my tummy.
                    Cysta Q is fine with me. You could get a sampl but you need to get it through your uro.
                    Laser cervical surgery after abnormal pap (moderate dysplasia) in 3/2004
                    UTIs since mid 2004
                    Recurrent yeast infections since mid 2005
                    IC dx 3/2006
                    V V dx 12/2006
                    Other conditions: IBS, allergies, dry eyes.


                    Current IC medications:
                    Elavil (since 12/06) 10 mg;
                    Cysta Q (since 5/07)
                    Rephresh acid jel every 3 days
                    D-mannose, fish oil, Calcium Citrate, Multivitamins & garlic pills (sometimes)
                    Probiotics Femdophilus or other brands
                    Gy-Na-Tren for yeast infections (started using it as needed since 2010)
                    Other Rx:Omeprazole 20mg; benadryl as needed, Restasis


                    Past Meds and why I stopped them:
                    Elmiron: March to September 2006: headaches
                    Lyrica:2 weeks in 2006: headaches
                    Cystoprotek: from Jan to April 2007: nausea

                    Femcon Fe (2/07 to 10/07):caused spotting/bleeding
                    BCP:Loestrin (since Ocotber 2007) to stop spotting for 2 months. V V worse. Stopped the pill in Nov 07.


                    "Obstacles don't have to stop you. If you run into a wall, don't turn around and give up. Figure out how to climb it, go through it, or work around it"

                    Comment


                    • #11
                      Cysta-Q

                      I tried it and it gave me frequency. If you have stomach problems taking Cystoprotek caps, open them up and pour the powder in water. It is felt that the problem with some stomachs and Cystprotek is the capsule.
                      Sammi

                      Sammi

                      Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
                      Diagnosis: IC, PFD (both in remission)

                      Comment


                      • #12
                        Hi ladies,
                        I have tried to get a sample of the cysto q .But i dont think they will send it out to Canada. Anyone can confirm this for me that would be great.
                        Hugs Sandra
                        "Never Give Up."

                        To view pictures of my creative interests and Maine Coon kittens click here: http://www.flickr.com/photos/[email protected]/

                        My Photobucket Link:
                        http://s237.photobucket.com/albums/f...ramack_photos/

                        Comment


                        • #13
                          Sammi, Are you referring to Cystoprotek or Cysta Q?Because I think there's an oily paste inside cystoprotek not powder. This is the one I used to freeze to avoid stomach problem. Ate th eend I was able to tolerate Cysta Q better but I think both are good.
                          Sandrmac, for Cysta Q call Call 877.284.3976 and ask them questions about the product, shipping, samples etc.
                          Laser cervical surgery after abnormal pap (moderate dysplasia) in 3/2004
                          UTIs since mid 2004
                          Recurrent yeast infections since mid 2005
                          IC dx 3/2006
                          V V dx 12/2006
                          Other conditions: IBS, allergies, dry eyes.


                          Current IC medications:
                          Elavil (since 12/06) 10 mg;
                          Cysta Q (since 5/07)
                          Rephresh acid jel every 3 days
                          D-mannose, fish oil, Calcium Citrate, Multivitamins & garlic pills (sometimes)
                          Probiotics Femdophilus or other brands
                          Gy-Na-Tren for yeast infections (started using it as needed since 2010)
                          Other Rx:Omeprazole 20mg; benadryl as needed, Restasis


                          Past Meds and why I stopped them:
                          Elmiron: March to September 2006: headaches
                          Lyrica:2 weeks in 2006: headaches
                          Cystoprotek: from Jan to April 2007: nausea

                          Femcon Fe (2/07 to 10/07):caused spotting/bleeding
                          BCP:Loestrin (since Ocotber 2007) to stop spotting for 2 months. V V worse. Stopped the pill in Nov 07.


                          "Obstacles don't have to stop you. If you run into a wall, don't turn around and give up. Figure out how to climb it, go through it, or work around it"

                          Comment


                          • #14
                            CystaQ has made a great difference for me, no side effects.
                            Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
                            Wishing you happiness and good health, and all the best out of life.

                            Peace, Carolyn
                            ___________________________________________________

                            Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


                            On the Beach with IC

                            Comment


                            • #15
                              Cysta Q in Canada

                              I just got my free sample mailed to me (I'm in Toronto). I filled out the online form, and received it in exactly one week. I paid $9.95 for the shipping.

                              Comment

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