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  • #46
    I will also see if my Uro will test me on this. I always thought that somehow there is a bacteria that is causing this.
    O this is an amazing piece of information. I am from NH & both my Uro & GYN is @ Darthmouth Hitchcock in Lebanon,anyone knows who can perform the test around my area. I will share with you people around the area what hospital or Drs. is accepting this concept. Cleveland is a little of a distant but if it is worthwhile,why not. I would definitely give this a shot.Absolutely.

    It's great to know that people are still caring others. You earned my respect.

    My gratitude,
    Li

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    • #47
      Hi there,
      This is very encouraging! I know that it is not helpful for everyone who has IC, but it great to always have new information!!!!! I am going to get tested for this [img]smile.gif[/img] Thanks so much [img]smile.gif[/img]
      Melanie R.
      Melanie R.
      "God carries us through the times that we feel the lowest"~unknown

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      • #48
        My Uro won't go for this concept.Any ideas what direction I should take......

        Li

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        • #49
          To: Unicornsintherain

          It has been about 1-1/2 months since you posted your message about the Cleveland Clinic and ureaplasma. Are you still without symptoms? Does your IC still seem to be gone? I had my GYN test me for ureaplasma last week. The results haven't come back yet ... I hope to find out tomorrow. But if it is positive, I need to consider whether to do a "second opinion" consultation with Cleveland Clinic (they do that on-line) to check into an antibiotic treatment. I just wanted to know whether you are still doing fine?

          Leesaw

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          • #50
            Leesaw I think it's good that you asked to get tested for this - I don't understand why anyone would not be interested in exploring every possible route. When I switchd to my current family doctor 3 months after I got sick in '99, this was the first thing he thought it was (and I had already done online research and was prepared to ask myself). Sadly, it wasn't the answer for me but it has been for other people. It freaks me out how people could waste their whole life being sick with something that was treatable.

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            • #51
              This new information is sure helpful in ruling out things and hopefully it cures some!!

              I am going to be tested too, I hope my insurance will cover.... the only reason I think that it COULD be U.U is because often when I have urine cultures done (and I have dipsticks at home...) it says that there is some bacteria present but not enough to meet UTI criteria or to treat. [img]frown.gif[/img] And my bloodwork is sometimes off too...

              But I have a lot of pelvic floor problems- sitting here right now I can feel that the muscles on the right must be tighter because my right leg aches a bit...from the top down...almost like sciatic pain.....

              I dont see how it could be bacteria with that!! I suppose this disease just really will never make sense! Haha. You think you have an answer.... [img]confused.gif[/img]

              Rachel
              @[email protected]
              "Well the Secret O'Life is enjoying the passage of time." ~James Taylor

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              • #52
                Hi-

                I had my test done in Poland in a private lab and it cost me $12. So I'd think it shouldn't be so expensive. Does anyone know how much it costs in the States?

                Chris

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                • #53
                  Hi All,
                  I don't know how Unicornsintherain is doing. She was on doxycycline and did not get better and then went for a hydro.
                  I also was on doxy and did not get better. My infectious disease doc changed my medicine to azithromycin (zithromax). I take 250 mg once a day. I've been on it for 1 week and am seeing a slow improvement. My husband tested positive to mycoplasma pnemonia and chlamydia pnemonia like me and is on the zithromax as well.
                  My infectious disease doc spoke at my Palm Harbor Support Group meeting two weeks ago and said that there are a number of bacterial and viral infections that could cause IC symptoms.
                  I'm 40 yrs old and if you looked at me you'd be shocked that I feel as ill as I do. I have IC, IBS, infertility, chronic fatigue, fibro symptoms, urethral-bladder-vaginal-rectal irritation, etc. etc. etc. I have thought for 2-1/2 years that I had chronic systemic yeast and have been on a yeast free diet for that amount of time and still I have been ill. I have been thru uro's, gyno's, internists, alternative gurus, chinese acupuncturists etc. I finally found a primary care physician who sent me to an infectious disease doctor because he knew that he could not help me and that it wasn't all in my head. How could it be... my husband had a lot of the same symptoms.
                  I'm writing to you because for the first time in a long time I feel ok. It's been a week on the zithromax and I don't want to jinx it but I feel better.
                  If anyone would like to personally email me... my email address is [email protected] I want to tell the whole world about these bacterial infections but I think I'll get better first so I have more ammo. For the first time I really feel that my husband and I are going to get better.
                  Well wishes to you all,
                  Jackie

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                  • #54
                    I have another theory about what started my IC. I have been exposed to many types of insecticide during the years, after having worked in greenhouses, worked in orchards, had bug sprayers around my house, etc. My symptoms started in my forties very suddenly, and it took me three years to get it dianosed. I believe that IC is an autoimmune disease in which the body turns onitself. Possibly, my bladder was damaged because of this. I have also been hit in the cervix with HPV - so perhaps, a certain part of the body is damaged. It is just an idea, that the environment could play a part in this, what with the chemicals I was exposed to. [img]rolleyes.gif[/img]

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                    • #55
                      I will be going back to the Cleveland Clinic for an entire month for pain rehab and treatment with my uro. I pray that my results will be as positive as yours. I will certainly discuss this test with him. Thanks for your post. wow...some hope! jodee

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                      • #56
                        Hi Jodee,
                        I don't think unicornsintherain posts here anymore. She uses another IC board but hasn't even posted there in a long time.
                        Could you please let me know how you are doing with your treatment. My infectious disease doc is treating me for c.pnemonia and mycoplasma pnemonia. I've had to change drugs a few times as the bacteria were not affected by doxy or zithromax. My husband and I are now on cipro. I'm hoping this will do it. If you would like to email me the address is [email protected]
                        Thanks and great luck.
                        Jackie

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                        • #57
                          This is amazing! It could be something..it got my attention. I will look into this first thing monday. Sounds a lot like my early days, but they tested me to death, I recognised I feel better on antibiotics too, but only for a few days. What a great find this article was, thanks for posting it/ glad I came in here tonight , Hugs, Sanctuary
                          Never take a "No" from someone not qualified to give you a yes..

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                          • #58
                            I've been reading up on this stuff the past few months and it's making me kind of neurotic. How does one catch these bacteria? It sounds like bacteria could turn out to be at the root of lots of medical conditions that we don't currently even think of that way. I asked my doctor and I asked that he not dismiss this right off because I said when you think about it, medical science doesn't really know anything...and he cut me off and said "oh it sucks, it totally sucks". So I'm glad he agreed with me but I'd almost rather he have been able to say something to dismiss these theories. He said he's read the research I was referring to but all he could say was there's nothing we can really do so I should just try not to worry about it. But I am.

                            I am just wondering how concerned I should be about these things. I'm not clear how they are transmitted.

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                            • #59
                              Really old thread but I have a question. Does Mycoplasma and Urea only effect those sexually active?

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                              • #60
                                and just how expensive is this?
                                -Jenny

                                Symptoms: Urgency, frequency, urethra stinging/burning, pressure, bladder pain.
                                Current Medications: Prelief, Pyridium, Loestrin FE 120, Probiotics.
                                Unsuccessful Medications: Elmiron, Atarax, Paxil (off since July 07 after 12 years), Oxytrol Patch

                                Diagnosed with IC in 2004, also have IBS and Endometriosis.

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