I am not sure what I have, but I was in the hospital 2 years ago with severe pain. I had a urologist check me out and he suggested i go on low dose antibiotics then. He said I have little bumps like all over the bladder and it is going to make me have frequent infections. I have had antibiotics on and off every month or so for 2 years. I am now starting on 250 mg a day every day. I do have pain, sometimes a frequency feeling, but not often. I do not have to go alot in the day, so I do not think I have IC, but maybe it is early. My sister is diagnosed with IC. I can mostly tell I have a infection by the odor, then pain and bloating feeling. It if depressing. I did not want to go on the antibiotics, but, here I am. I am wondering if anyone on here has been on the antibiotics? How long? Did you have side effects
I have heard of only a few people with IC saying they take constant doses of anti-biotics(which must be for a UTI or something because they do absolutly nothing for IC)
Is your Dr. At all conserned that this infection will not go away and remains nameless?
I may be concerned with taking a constant dose of anti-biotics(even low dose) because of the many problems there known to cause on a consistany basis.
Have you gotten a sencond opinion?
With something that may be an infection which remains a mystery s second or third opinion may help discover what’s going on.
Hope you feel better soon.
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-----Original Message-----
From: ishish interstitial-cystitis-cpt8731@lists.careplace.com
Date: Wed, 23 Apr 2008 10:56:00
To:jklog3@yahoo.com
Subject: [interstitial-cystitis] antibiotics low dose
I have UTI every month or so. Last time I could tell after i got off the antibiotic, about a week or less after that I had a UTI again. I do not have alot of symptoms, until the infection gets worse. I always go in and get a culture taken. I can not remember what the name of what I was told I have is. I think my bladder looks like the badlands.
Oh PS
I’ve heard a lot about having a condition that causes a chronic amount of pain can trigger a syndrom called chronic pain syndrom.
And that a lot IC diagnosis aren’t true blue IC but a chronic pain condition.
Just a little pointless information if the pain ever exists without a UTI , hunners or pinpoint bleeding.
Sometimes you have to lead these docs to the right path with your own ideas.
------Original Message------
From: ishish
To: jklog3@yahoo.com
ReplyTo: ishish
Sent: Apr 23, 2008 11:54 AM
Subject: Re: [interstitial-cystitis] antibiotics low dose
Can somebody please tell me how to get out of this email list? I did NOT register for it and am not a member therefore I cannot get into the website to get off this list.> To: tampalinda@hotmail.com> From: interstitial-cystitis-cpt8731@lists.careplace.com> Subject: Re: [interstitial-cystitis] antibiotics low dose> Date: Wed, 23 Apr 2008 12:19:02 -0400> >
Antibiotics do in some cases have an anti inflammatory effect. They are
used as treatment for Inflammatory bowel disease in some cases so there
are some IC patients that have felt they are helpful. Weather or not
both the IBD and IC cases that find them helpful actually have an
undetected bacterial infection is not known but I know my bowels have
been biopsied more times than I could possibly count and still no
bacteria ever found yet I do respond to the anti inflammatory effect
there.
It is true though that most cases that have been on antibiotics long
term that are IC patients are also dealing with infections since there
are some theories that the damaged bladder lining gives infections a
greater chance of recurring.
Faith, Hope, and Love,
Katrina
-----Original Message-----
From: Jess [mailto:interstitial-cystitis-cpt8731@lists.careplace.com]
Sent: Wednesday, April 23, 2008 10:33 AM
To: carmelann@charter.net
Subject: Re: [interstitial-cystitis] antibiotics low dose
I don’t deny that there are likely cases of IC where there is not
bacteria connection. I have a lot of experience with this and I know of
many cases where broth cultures have detected bacteria and know of the
research done to detect bacteria in IC patients.
http://www.ic-network.com/forum/forumdisplay.php?s=&f=50&page=1&pp=25&so
rt=lastpost&order=desc&daysprune=-1 IC network has a forum speaking
of the controversial experimental treatment of antibiotics for IC. I
moderate this forum. There is research that supports that in some cases
the damaged bladder does make a patient vulnerable to bacteria.
I highly suspect there is more than one kind of IC…I have talked to
so many patients that to totally dismiss bacteria in all cases of IC is
something I cannot do anymore because I have talked to too many patients
that have needed to get the broth culture and different types of
treating to the bacteria to ever get to the point of starting to heal
the damage.
I also know that in the beginning with my IC antibiotics often helped me
feel better. They do nothing now that I can tell but since always on
them the effect would be hard to notice.
Damage of the bladder varies greatly and ulcerative IC tends to have
different issues, shrunken bladder, and so on are very different cases.
Please don’t take this personally. And please don’t assume I don’t know
what I am talking about. I have taken the middle road because I have
listened to too many cases to not feel that there is a need to do so.
About70 % or more of IC patients have Pelvic Floor Dysfunction which
tends to cause retention. Retention increases the risk of infection
this is well known fact. There are cycles of vulnerability that
although can be treated and hopefully prevented that do exist.
Faith, Hope, and Love,
Katrina
-----Original Message-----
From: Jess [mailto:interstitial-cystitis-cpt8731@lists.careplace.com]
Sent: Wednesday, April 23, 2008 1:18 PM
To: carmelann@charter.net
Subject: Re: [interstitial-cystitis] antibiotics low dose
IC has no link to bacteria in the bladder at all. And although there are conditions that do more often co inside with IC, there is no need to take anti-biotics for IC. Infact one of the defining characteristics of IC is that anti-biotics have no effect on it either way. That’s why I said people with IC who take anti biotics have a “UTI. Or something”. The something being any other reason than IC itself.
The inflamatory properties of IC are not shown to cause infection more than in anyone else. They believe IC is a handful of conditions or perhaps an auto- immune condition in which the persons own body has attacked the bladder. IC is still very much a mystery. Especially as to why other abdominal conditions so frquently accompany it.
Some people may get a lot of infections, but people without IC can get more bladder infections than someone with. So its all just very circumstantial and provides no consistant identifying make-up for IC or the conditions which are more common because of it.
I’m a good example as I’ve had severe IC along with endometriosis and a somewhat recently diagnosis of IBS, but have only had one UTI in my teens and no bladder infections since. There are a lot of people who do not get bacterial infections with IC and some who do. But someone can hardly say its due to IC when researchers who have deticated their lives to IC have been unable to prove it themselves.
I for one would rather see them as un connected. Why link another problem to IC when we don’t have to yet. Besides we’ve over used anti biotics and built up resistance to more dangerous bacteria. Most Dr’s throw anti-biotics at us when we don’t even really need them. There are tons of things to try first. Including time.
People don’t realize that over use of anti-biotics may be why we keep getting infections over and over.
When it comes to IC a large part of it is only un proven research or research that doesn’t include enough testing subjects to begin with and bias to what that reasearcher wanted the outcome to be.
But keep in mind not to confuse bacterial Cystitis and Interstitial Cystitis.
Sent via BlackBerry from T-Mobile
-----Original Message-----
From: teeger671 interstitial-cystitis-cpt8731@lists.careplace.com
Date: Wed, 23 Apr 2008 13:37:37
To:jklog3@yahoo.com
Subject: Re: [interstitial-cystitis] antibiotics low dose
I have been on antibiotics for a very long time and the worse side
effect is you don’t have enough healthy bacteria. Yeast develops and
bowel problems develop. Probiotics are necessary to deal with that much
antibiotic treatment. So far the other draw back is that occasionally I
will suspect infection but it is harder to determine since already on an
antibiotic. I have been lucky and not personally had any infections
that don’t respond well to antibiotics develop.
Small bumps on your bladder…are these ulcers? It sounds an awful lot
to me like you have IC. Have you been to http://www.ic-network.com/
and http://www.ichelp.com/
They are the best sites on IC.
Basically my infections or UTI’s lasted me only about 4 years and I
finally started having UTI symptoms without there being any sign of
bacteria and got diagnosed correctly. I have been on antibiotics the
majority of this time for other reasons.
There are IC experts that believe every chronic UTI patient should be
considered a possible IC patient at the very least and I know I had IC
developing when my diagnosis was chronic UTI’s.
Faith, Hope, and Love,
Katrina
-----Original Message-----
From: ishish [mailto:interstitial-cystitis-cpt8731@lists.careplace.com]
Sent: Wednesday, April 23, 2008 9:56 AM
To: carmelann@charter.net
Subject: [interstitial-cystitis] antibiotics low dose
Oh, there are some people who do get chronic UTI’s(obviously)
And of you have “bumps” you may want to get a second opinion on IC from a doc who knows a lot about it. The “bumps” might be hunners ulcers, which is the less common form of IC but the one which causes more problems with frequency.
The problem with the IC and chronic UTI theory is that IC has to exist without any bacteria in the bladder. And if the pain and urgency do not exist when there is no bacteria the only problem then seems to be chronic UTI’s. A cestoscopy is the only way to really diagnosis IC, although the physicall symptoms can appear long after the unseen ones like pain and heaviness. There in lies the problem with IC. If you’ve had a cestoscopy get another one. Pinpoint bleeding or hunners ulcers could be present, and that’s the defining character of IC
IC and UTI’s having anything to do with eachother is a common mis-conseption.
You said you didn’t have IC, but you should still get another opinion. It doesn’t sound like it(because your symptoms go away when your UTI is better) but bumps are not a symptom of a UTI
------Original Message------
From: ishish
To: jklog3@yahoo.com
ReplyTo: ishish
Sent: Apr 23, 2008 11:54 AM
Subject: Re: [interstitial-cystitis] antibiotics low dose