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  • #16
    uni-fabulous! Thanks for the info! What did they do to test you-like a swab or something?
    Jen


    "When you get to the end of your rope, tie a knot and hang on" -Franklin D. Roosevelt

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    • #17
      Could you please tell me how much the test for the bacteria ureaplasma urealticum costs? Is it a urine test? Does it take a long time to get the results? Would it be better to go to a gynecologist or urologist to get this this test done? How can I get information on the Cleveland Clinic study? What did it prove? I know I have asked a lot of questions but this is really an excitng development in the possible cause and treatment of ic. I would appreciate any information any of you could give me. Thank you so very much.

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      • #18
        LT,

        You say the antibiotics are really working. How long have you had IC? Have you tried alot of the other treatments out there? Just curious if you're new to IC. This is great news!!

        Beth

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        • #19
          Congrats Uni!

          Glad this is working for you...

          I'd like to try this as well. My impression is my uro doesn't think IC is caused by bacteria, but hopefully she will be open minded to test me or try this method.

          What anitbioitcs are you taking and for how long?

          Nicole <img src="graemlins/blink.gif" border="0" alt="[blink]" />

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          • #20
            Hi Beth,

            Fairly new (although it seems like forever). Since May of this year. I don't post here much, but I check out the articles once in awhile. I haven't done any invasive therapies. I started with the Desert Harvest Aloe, Algonot Plus and then became convinced of the bacterial theory and started on natural antibiotics (raw garlic, oil of oregano, goldenseal, olive leaf extract) and saw some real improvement. I took the Cleveland Clinic study in to my Dr. and pleaded with him to let him try me on antibiotics (he wouldn't do the PCR testing) as I really felt I had mycoplasma/ureaplasma issues. He agreed and also has me on Diflucan (I've had major yeast issues which can mimic bacterial urethral symptoms). I still wish he would have done the test, but oh well. I just hope this continues. It's like night and day. I also had a broth culture urinalysis (like they used to do in the olden days before the new "rapid" tests became available) done by United Medical Labs in McLean, VA and they found enterococcus (strep-D) in my urine, so I'm probably dealing with multiple issues, but feel I'm definitely on the right track!

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            • #21
              Links for the Cleveland Clinic study:

              http://www.drmirkin.com/women/8350.html
              http://www.clevelandclinic.org/urolo...misc/vol6g.htm

              The links I indicated earlier to the labs that do PCR testing will give you a lot of info, including pricing:

              http://www.imd-lab.com
              http://www.mdlab.com

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              • #22
                Donna or Jill: I would be very interested in hearing what either of you have heard about this in any of your research or experience. The good, the bad, the ugly. [img]smile.gif[/img]
                Kim

                Diagnosed August 2001

                Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


                Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

                I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

                *****************************

                “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

                “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

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                • #23
                  The test was a swab test and i dont really know how much it cost. Ohio has health insurence for parenting families of certain incomes and it covors it.
                  Just to let you guys know... i don't necisarilly claim this to be a cure or anything... think back though when you first had IC, did you think it was a uti? did the symptoms disapear breifly when you took antibiotics? and even if my symptoms do come back... doesnt it mean something that they go away at all. Cleveland Clinic is one of the best hospitals out there... they ranked top in most fields by us news and world reports and second in the country in urology. My Dr sees hundreds of IC patients, infact its almost all that he deals with. I think that this is worth a shot as a treatment just as much as any other. It probably wont work for everyone, but how many treatments do? If we can help a couple of us find releif, then it is worth it. <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />
                  It is only with the heart that one sees rightly, that which is essential is invisible to the eye. THE LITTLE PRINCE

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                  • #24
                    What do you mean by a "swab test?" Sounds owee.

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                    • #25
                      Unicorn
                      I just wanted to know, did you have a hydro,were you officially dx with IC,nevermind I just printed out your post and see you were. How could something like that cause the pinpointbleeding in the bladder?This is interesting-JoJo

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                      • #26
                        JoJo,

                        Numerous studies have shown that many patients with every classic IC symptoms have no glomerulations in their bladder upon hydrodistention, while many people with "normal" bladders and no symptoms DO have glomerulations. I'm assuming this is why the latest NIDDK study (that I just read about on this website) that is studying IC are not requiring cyto/hydrodistention diagnosis to participate. They are strictly relying upon the patients clinical symptoms. The NIDDK has always had by far the strictest conditions for participating in their studies, and are now apparently abandoning the "now ambiguous hydrodistention" (a quote from this website regarding the study) as a method of diagnosis. Many other Dr's and researchers are also. When people with healthy bladders display "pinpoint bleeding" on hydrodistention and other people with horrible IC symptoms don't, it really makes no sense as a diagnostic tool.

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                        • #27
                          Hi
                          From what I read this could be a STD,in away . It is known to be sexually transmitted, maybe that is how I should put it. Do they connect this with trichmonoiasis? Its funny cuz in1989 I had that and months later I was at the uro, complaining of frequency.. I did take antibiotics for it. Did anyone else out there have trich and notice there uro problems started. I have to tell you this blows my mind but I cant tell you guys why cuz you will think I am nuts <img src="graemlins/eek.gif" border="0" alt="[eek]" /> -JOJO

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                          • #28
                            JoJo,

                            Aw...come on. Tell us what you think.

                            If anyone told me a year ago that I'd be sitting around discussing my bladder, urethra, vulva, vagina and anus with complete strangers, I would have told them they were nuts!

                            IC makes everybody nuts, so what? [img]wink.gif[/img]

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                            • #29
                              Yeah, JO. Spill it. <img src="graemlins/lmao.gif" border="0" alt="[lmao]" />
                              Kim

                              Diagnosed August 2001

                              Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


                              Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

                              I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

                              *****************************

                              “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

                              “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

                              Comment


                              • #30
                                Oh, and unicorn - congratulations (?) on finding something that has helped you feel back to normal. That is soooooooo wonderful and I bet it just feels awesome! <img src="graemlins/kissing.gif" border="0" alt="[kissing]" />
                                Kim

                                Diagnosed August 2001

                                Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


                                Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

                                I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

                                *****************************

                                “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

                                “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

                                Comment

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