I have been hearing a lot lately about mycoplasmas. they can give the same exact symptoms as IC. It is very difficult to test for a mycoplasma infection, and very often you will test negative even when you are positive. It is sexually transmitted, and airborn as well. I am going to go get tested soon (its a blood test). Has anyone ever heard of this before? Has anyone tested positive?
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Hi:
I got tested both for ureaplasma urealyctium (sp)and mycoplasma hominus (sp)
way back when because I learned that an infection with either can supposedly cause urethritis. I tested positive only for the ureaplasma. I should mention that the sample swab was taken directly from my urethra.
After taking the antibiotics (doxycyline and erythromiycin) for a few weeks, I didn't notice any real difference im my bladder symptomology. Repeat testing (PCR analysis) a few months later reveled that the ureaplasma had been eradicated. Hope this info helps.
LynneComment
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I wonder if mycoplasma infection can lead to scarring which can mimic IC?Julie Beyer, MA, RDN
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Sparky2, I am really impressed by the thoroughness and quality of the medical care you have gotten.. I have found it difficult to have these things checked out.. I finally sought out help on the ureaplasma issue by going to a clinic far away from my home..are you going to a major university medical center? I think alot of urologists just do a few standard urine cultures and then throw up their hands and give up.. I think this has been a reason that we are so far behind in IC research.. I'd like to hear back from you.. thanks!Comment
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Hi Lara:
I should acknowledge that my first urologist DID NOT want to test me for ureaplasma; she said it would be a waste of time and actually made me feel quite small about requesting such an expensive test. Suffice it to say, her attitude DID NOT sit well with me and I let her know it.
My second urologist, however, had no problem retesting me a few months later to make sure that the bacteria was no longer present. She is the best...totally cool and receptive to all of my input.
In dealing with doctors, I've learned that a patient must do his/her homework in order to have the footing on which to stand and say "I want this ruled out." Arm yourself with any and all RELIABLE information that exists to support your viewpoint.
When actually in the office, present your concerns to the doctor in a matter-of-fact, assertive way. Try not to get emotional if the doctor wants to pooh pooh your fears away. Instead, say something that acknowledges his/her viewpoint in a respectful way. Then, go on to reiterate how much you want this test done ANYWAY for your own peace of mind.
If all else fails, seek out another practitioner who will work with you and respect your opinions. My current urologist (the BEST in the state for IC) IS affiliated with Brown University. (I live in RI). I have seen doctors both in RI and MA, so I do have access to some of the best in the country and for that I'm very grateful.
Hope this helps,
Lynne
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Hi all. May I ask you about these 2 infections that you mentioned? I have been suffering for 8 years and shameless to say have left it all up to the hands of my dr's. with no relief. My symptoms have worsened. I have done every treament and every pill. I was wondering if this could be some unknown/undectected infection . My dr. throws his hands up every time i mention that i am researching on the comp. He told me not to do that. Elmiron has done nothing. In fact my symptoms have increased 10 fold since being on it. Do you reccomend getting tested for this? And if so, does the uro or gyno do these tests. Please advise. I need all the help I can get. For I have never in the 8 years I'm suffering, met anyone who understands the pain and depression caused by this horrible disese.
Thank you for being there for us. And good health to all of you.
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Hi Sharon:
Either a gynecologist or a urologist can perform the test. They can see if you have mycolplasma/ureaplasma by taking either a vaginal or urethral swab. (I think that the urethral swab makes more sense because it shows that the bacteria is in the urethra.)
As to whether you should have the test or not, I would say that it can't possibly hurt to have it ruled out. You should know that there is a very good chance that it might come back positive, but still might not be the cause of your bladder problems. Why? Because appx. 25% of all women test positive for these bacterias; they're really considered part of the normal bacterial flora in the genitourinary tract.
That being said, there is the off-chance that you might have an overabundance of these bacteria that could be contributing to or causing your bladder to spasm. I hope this info helps!
LynneComment
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Hello everyone,
I mentioned the mycoplasma and ureaplasma bacterias to my Dr. who rang the Microbiologist at our nearest hospital. She knew about these bacteria but said we don't test for them in New Zealand. There's no point in sending a swab overseas either because the bacteria would die in transit, producing a negative result.
My Dr. has prescribed the recommended anti biotic Doxycycline for 3 weeks. Then we're planning to try a course of Erythromycin. My Dr. told me that these antibiotics may help but probably won't be a cure.
He took this message bd. topic seriously and rang me personally to tell me what he'd found out.
I'll let you all know how I get on with this antibiotic therapy.
Shelley
[This message has been edited by Shelleynz (edited 03-01-2001).]Comment
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