Announcement

Collapse
No announcement yet.

everyone must read!!!!!!!

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • everyone must read!!!!!!!

    I Started going to the Cleveland Clinic in Ohio which is ranked 2nd in the country for urology. he Dr that I saw there was one that was recomended to me by the ICA.
    When I first got there He asked me my history etc.. and I told him that After many long months I had been diagnosed with Interstitial Cystitis via hydrodistention and cystostcopy. He gave me some important information that has absolutely changed my life and I would like to share it with you.
    He finds that a high percentage of people that come to his office with Interstitial Cystitis test postitive for a bacteria called Ureaplasma Urealyticum... needless to say i tested positive for this bacteria. I have taken one course of antibiotics and my symptoms are all but gone. He said most urologists do not test for this bacteria because the tests can be costly. I asked him for some information to share with everyone and he sent me a paper with the following information:

    Ureaplasma Urealyticum is the smallest free living organism known. It is like no other bacteria requiring special tests for identification. Even with these special tests, ureaplasma can be very difficult to isolate and treat.
    Ureaplasma can be found in the genitals, bladder or rectum of 30%-50% of adult men and women. It can be silent or cause a variety of symptoms such as discharge, burning and pain or can even impair fertility or cause complications with pregnancy.
    Ureaplasma can be acquired in a multitude of ways many of which are unclear. It is known to be transmitted sexually, thus it is considered to be a sexually associsated disease. A diagnoses of ureaplasma in yourself or your partner does not imply infidelity, but does mean that both of you should be treated.
    Your Dr will prescribe special antibiotics for the both of you. It is advised not to engage in sexual activity during the course of the antibiotics (10-14 days) to ensure that the bacteria is completely eliminated. It is important to return to the office approximately one week after finishing yout medication to reculture and make sure that the bacteria is completely gone.
    Again this bacteria is a sexually related organism, not a sexually transmitted disease.

    I am not promising that this is an all time cure or anything, but so far I have no symptoms anymore, after thinking I would live the rest of my life in pain. My Dr sayes that some not all of his patients show good results by treating this bacteria, but I think it is worth a shot for anyone who wants to try it. Infact Cleveland Clinic is finding that they can eliminate symptoms in over 50% of IC patients by treating this bacteria. good luck.
    It is only with the heart that one sees rightly, that which is essential is invisible to the eye. THE LITTLE PRINCE

  • #2
    Thank you Uni for this message. I will have my urologist check into this, and hopefully he will test for it.

    What antibiotics and at what dosage did you take?

    Thanks again for this information. It would be wonderful if this were the case for many of us, Gail <img src="graemlins/bunny.gif" border="0" alt="[bunny]" />

    Comment


    • #3
      Unicornsintherain,

      Do you know if only 1 person would show these symptoms? I mean I have smptoms of IC but my boyfriend does not could we both have Ureaplasma? Thanx for this info I am going to see my urilogist next week and ask him about it.

      Take Care,
      Renee

      Comment


      • #4
        Yes, my boyfriend exhibits no symptoms and he is positive for it. Most people have no symptoms. Just a lucky few. here is alot of information available online. There is even some speculation that it may cause fibro and cfs.
        It is only with the heart that one sees rightly, that which is essential is invisible to the eye. THE LITTLE PRINCE

        Comment


        • #5
          I am assuming that you have to have symptoms of pain, burning, etc. to have this be the cause? I just have frequency, urgency. Can this bacteria cause just those as symptoms?
          The more people I meet, the more I like my dog. (exception: the nice people on here!)

          Comment


          • #6
            I would ask your dr. All I know is what my dr told me and what was on the paper I quoted. Cleveland Clinic is one of the leaders in IC research though.
            It is only with the heart that one sees rightly, that which is essential is invisible to the eye. THE LITTLE PRINCE

            Comment


            • #7
              While looking on the net about ureaplasma urealymticum, Doxycycline was mentioned to be 100% sensative/proof. What was the antibiotic you were prescribed?

              Comment


              • #8
                Its a long story but the first antibiotic i had to stop taking and now im on doxycycline.
                It is only with the heart that one sees rightly, that which is essential is invisible to the eye. THE LITTLE PRINCE

                Comment


                • #9
                  Hi!
                  This is really incredible news!! I intend to call my urologist, and hopefully get tested. Thanks SO much for the great news, and I am glad you are feeling better!! You are really an angel
                  <img src="graemlins/angel.gif" border="0" alt="[angel]" /> for sharing this information with us all!
                  Mary <img src="graemlins/hi.gif" border="0" alt="[hi]" />

                  Comment


                  • #10
                    I just want to make it clear to everyone that this wont work for everyone, just as every treatment with IC. I just think its worth a shot. Let me know what your drs think.
                    It is only with the heart that one sees rightly, that which is essential is invisible to the eye. THE LITTLE PRINCE

                    Comment


                    • #11
                      Hi everyone:

                      Early on when I first had symptoms, I insisted that my doctor test me for this. She was VERY reluctant to do so because acc. to her 1.) the PCR test for it IS very expensive, and 2.) she had a hard time believing that this bug could be causing me urethral symptoms since about 75% of ALL women walk around with this bug as part of their natural bacterial flora day in and day out.

                      Well, to make a long story short, I insisted upon the test and subsequently did test positive for it and was treated appropriately [i.e. a few weeks with both doxycycline and e-mycin (as was my husband)]. End result - no significant improvement on either of these 2 antibiotics, though a repeat culture showed no u.u. .

                      Though I don't want to discourage anyone else, I just wanted to share my experience. In truth, I believe that anyone newly diagnosed with IC should definitely try a few courses of different antibiotics to see if he/she is suffering from some sort of occult infection.

                      Best wishes,
                      Lynne

                      Comment


                      • #12
                        Thanks for the info I will pass it on to my new uroologist next week!

                        Kara
                        "Never take, I don't know how to help you as an answer."

                        [email protected]

                        Kara

                        Comment


                        • #13
                          Just wanted to let everyone know that I called my urilogist and they don't test for Ureaplasma Urealyticum. But my gyn does so I made an appointment for Oct. 28th to be tested. So any of you considering being tested should call your doctor to see if they do run the test for Ureaplasma Urealyticum.

                          Thank you,
                          Renee

                          Comment


                          • #14
                            Unicornsintherain,

                            I know I spelled that wrong... I am thinking of going to cleveland clinic. Would you e mail me with the name of the doctor that you saw there I would appreciate it so much..

                            I have several names amd info on drs there.

                            [email protected]
                            Thanks Rita

                            Comment


                            • #15
                              There are two labs doing PCR testing for mycoplasma and ureaplasma that will accept specimens from your Dr. via Fed-Ex. Their urls are: http://www.imd-lab.com and http://www.mdlab.com

                              I have done a lot of research on mycoplasma/ureaplasma and found the Cleveland Clinic study online and wanted my Dr. to test me (he wouldn't) but he did prescribe Azithromycin for 6 weeks. I've been on it for 6 days and I'm almost pain free! It's amazing. Another piece to the puzzle though is that you need to treat yeast while you're doing this. Even if you don't have visible vaginal yeast, small amounts can mimic the same urethral symptoms as the ureaplasma. I'm on Diflucan for the 6 weeks that I'm on the antibiotics. It's really working!

                              Comment

                              Working...
                              X