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  • #16
    I thought I read its just a urine test which would be so great!
    Cindi


    Gelnique for frequency/urgency - works great
    Macrobid after sex
    Prilosec, continuous birth control pills
    synthroid .088mg, mucinex-d, restasis

    Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

    Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

    IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
    AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
    AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
    Great treatment flowchart on page 19 of the pdf

    Comment


    • #17
      They were trying to get a patent on a urine test for APF, but note sure what's happened with that.
      ~Ashley

      Comment


      • #18
        I have been waiting for news like this. I hope testing goes well.

        Comment


        • #19
          i will kiss the ground the researchers walk on whoever finds a cure or a magic pill for us. it would be awesome if it turned out to be a woman who discovers it.
          Newly IC diagnosed as of February 2011.

          Medications I'm on that seem to work:
          Zoloft- one once a day
          Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

          Failed Meds:
          Elmiron-after 4 months,digestive side effects got to be too much
          tramadol-allergic
          DMSO treatments(5-6)
          probiotics

          THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
          AROMATHERAPY-candles,incense
          Village Naturals Aches and Pains Peppermint Bath Salts
          Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

          ACUPUNCTURE/HERBS
          Significant pain relief so far.

          MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
          ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
          ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

          Add me on facebook Angela Hasic

          ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
          Lord, make me an instrument of your peace;
          where there is hatred, let me sow love;
          when there is injury, pardon;
          where there is doubt, faith;
          where there is despair, hope;
          where there is darkness, light;
          and where there is sadness, joy.
          Grant that I may not so much seek
          to be consoled as to console;
          to be understood, as to understand,
          to be loved as to love;
          for it is in giving that we receive,
          it is in pardoning that we are pardoned,
          and it is in dying [to ourselves] that we are born to eternal life.

          Comment


          • #20
            Originally posted by suzannes View Post
            Landish,
            I think it means that they are looking at substances that block APF. If APF is blocked the thought is damage supposedly caused by APF will blocked.

            Suzanne
            Thanks Suzanne! This is very interesting but what is APF? It's a virus? It's a bacteria? Where does it come from?, from preservatives in food?, from soap? Of course I would like that they block it first but I also want to know what that is.

            Comment


            • #21
              It a substance our bodies make (just people with IC) and know one knows why. And it keeps our bladder cells from proliferating like they do in people without IC. I can't say that this has been proven, but to me to shows that IC is in our genes, not a hidden infection.
              ~Ashley

              Comment


              • #22
                God bless you Susan Keay. This is the most exciting thing I've heard since I've had this disease for four yrs. Please be the one! Each year I pray that this is the year I get better. This is the hope I needed. Thank you so much for sharing this Jill


                Scott

                Comment


                • #23
                  The image in my head of IC researchers sitting around drinking beer and playing dominos is beginning to change.

                  Comment


                  • #24
                    Originally posted by LithEruiel View Post
                    They were trying to get a patent on a urine test for APF, but note sure what's happened with that.
                    This was taken from a report Jill posted yesterday:

                    The Latest on Antiproliferative Factor (APF)
                    Susan Keay, MD, PhD, from the University of Maryland reviewed her research on antiproliferative factor (APF) and the role it may play in IC. Although APF clearly differentiated those with IC from those without, coming up with a test that your doctor can use has been tough. The APF signal is so small, that it’s very hard to amplify it to a measurable level. The very common technique of using antibodies to the substance you’re looking for just didn’t work out, and although the idea isn’t entirely off the table, Dr. Keay may be looking for ways to detect the APF peptide on its own, which will be a challenging task.

                    Comment


                    • #25
                      lol scott same here. i didnt think there was much research going on recently.
                      Newly IC diagnosed as of February 2011.

                      Medications I'm on that seem to work:
                      Zoloft- one once a day
                      Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

                      Failed Meds:
                      Elmiron-after 4 months,digestive side effects got to be too much
                      tramadol-allergic
                      DMSO treatments(5-6)
                      probiotics

                      THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
                      AROMATHERAPY-candles,incense
                      Village Naturals Aches and Pains Peppermint Bath Salts
                      Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

                      ACUPUNCTURE/HERBS
                      Significant pain relief so far.

                      MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
                      ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                      ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

                      Add me on facebook Angela Hasic

                      ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                      Lord, make me an instrument of your peace;
                      where there is hatred, let me sow love;
                      when there is injury, pardon;
                      where there is doubt, faith;
                      where there is despair, hope;
                      where there is darkness, light;
                      and where there is sadness, joy.
                      Grant that I may not so much seek
                      to be consoled as to console;
                      to be understood, as to understand,
                      to be loved as to love;
                      for it is in giving that we receive,
                      it is in pardoning that we are pardoned,
                      and it is in dying [to ourselves] that we are born to eternal life.

                      Comment


                      • #26
                        Originally posted by sshannon74074 View Post
                        The image in my head of IC researchers sitting around drinking beer and playing dominos is beginning to change.


                        Thanks GardenGirl.

                        I think if they do make an APF antagonist pill, I wouldn't care whatever test I had to get done to be able to take it. It would be really nice if it was just a urine test, but even still...this is such good news.
                        ~Ashley

                        Comment


                        • #27
                          yeah, and no more champagne and caviar for our doctors.

                          Comment


                          • #28
                            Found this article from 1997 about Dr. Keay's research on APF.

                            http://www.sciencedaily.com/releases...1020164711.htm

                            Comment


                            • #29
                              Im new to the depthness of IC...but what exactly is APF and how does it effect us??? any help would be great

                              Comment


                              • #30
                                Greetings all!

                                Just came across this thread and wondered if there have been any further developments in regards to the APF factor urine test and/or APF factor antagonist?

                                Comment

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