long term antibiotics

[Gilly]

Hi there,
I know that long term anitbiotic use as a treatment for IC is very controversial but I was wondering if anyone on this site has tried it. A doctor that I saw mentioned it as something we could possibly try if other treatment methods were ineffective. He said that there is theory that IC is an encapsulated bacterial infection and thus the tests come up clean but there are still bacteria in the walls of the bladder. Anyway, I know this is a long shot and it a last resort but I would be REALLY interested in hearing if anyone has any experience with this kind of treatment. Thanks so much and I really hope that everyone is having a happy, healthy and flare free day. :hi:
Gilly :D

[Dixiefireball]

many icers has either tried it even some are doing it now as we speak it has helped some people.
sending you hugs and prayers
Rhonda:kiss:

[PikkuMyy]

Hi Gilly,

There are at least several members who have had success with LT antibiotics.

I'm trying a low-dose antibiotic for 3 months because I've had so many UTIs (5 in the past 6 months). I wonder how it might affect my bladder symptoms. I'm thinking that maybe I have these sort of "pods" of bacteria because until a few years ago, I NEVER got UTIs and since then, I've drunk tons of water, cranberry juice, washing before and after sex, everything I could do to help it.

We'll see what happens!
Emily

[Dixiefireball]

Emily most icers can't stand to drink Cranberry juice way to much acid. i also drink alot of water after sex and wash well and pee after sex.
but cranberry juice no way for me. Wow its hard to believe there is an icer who can drink cranberry jucie. WOW.

[Martha13]

I am someone who has had success with long term antibiotics. You can find my story, and others, on icsuccessonline.com.

Those who have had success have had a broth culture performed. This is much more extensive than the 24 hour agar plate usually done. A sensitivity test must be run to find the most effective antibiotics (usually several will work). The most common bacteria found is Enterococcus. It usually takes several months of treatment, probably because the bacteria has been there for a long time and it is not your usual E. coli caused UTI. We do not know yet whether Enterococci form biofilms like E. coli. Scott Hultgren, Ph.D. of Washington University in St. Louis, made the discovery of biofilms and he is currently conducting a study of 200 patients with recurring UTI's. He is also studying Enterococcus, a known uropathogen but which is not as well understood as E. coli.
http://www.hultgrenlab.wustl.edu/research_UTI_path.html

We are doing research here into the connection of bacteria with IC. Most researchers have dismissed this idea because their culturing methods do not find a consistent species of bacteria. There are two labs in Northern VA that will do a broth culture: Fairfax Medical Lab and United Medical Lab. I do not know of any other labs in the country that will do this for urine except Dr. Paul Fugazzotto, retired microbiolgist.

If you have any questions or would like more information please email me: mfmidlo@aol.com. I would be happy to explain more about the theory and research currently being conducted.

Martha F

[Katrina]

I am on longterm antibiotic treatment but for something else with the understanding that it has been helping my IC....so like a mixed treatment. For me ....I can always tell when my body is too used the antibiotic...that is the biggest problem...so alternate between two different ones.

There is also the problem of yeast infections..grr.

So if you consider it ...yes there a lot of us doing it that find our symptoms improved. It wasn't a mirracle for me...but I will take all the help I can get.

[poetgirl]

I have an open script for Macrobid because I was prone to getting UTIs. I would take one after having sex, and for a long time I was taking one every other day just to keep the bacteria levels low enough to suppress the UTIs most of the time (I think I got one breakthrough infection during that time.)

However, (knock wood) since beginning treatment for IC about a year ago, I seem to have also finally broken through the UTI cycle. It's been many months since I've had one. I'm not really sure why that is, but I'm not complaining! :thumbsup: Still, I keep that Macrobid around, just in case...

[sleepyangel30]

i know 10 day antibiotics use to work for me even though i didn't have a bladder infection and soon as i was done with them my ic got back worse, anyway, i think my ic was caused by some kind of bacteria, i had many uti's as well before my ic started, i remember my uro found alot of yeast in my bladder along with a uti he treated me for both the yeast and uti and the yeast was so hard to get rid of so he orderd me more meds, i still thought i had an infection because the frequent urination would not go away after treatment, at that time i knew nothing about ic until i found another uro.

Originally posted by Martha13
I am someone who has had success with long term antibiotics. You can find my story, and others, on icsuccessonline.com.

Those who have had success have had a broth culture performed. This is much more extensive than the 24 hour agar plate usually done. A sensitivity test must be run to find the most effective antibiotics (usually several will work). The most common bacteria found is Enterococcus. It usually takes several months of treatment, probably because the bacteria has been there for a long time and it is not your usual E. coli caused UTI. We do not know yet whether Enterococci form biofilms like E. coli. Scott Hultgren, Ph.D. of Washington University in St. Louis, made the discovery of biofilms and he is currently conducting a study of 200 patients with recurring UTI's. He is also studying Enterococcus, a known uropathogen but which is not as well understood as E. coli.
http://www.hultgrenlab.wustl.edu/research_UTI_path.html

We are doing research here into the connection of bacteria with IC. Most researchers have dismissed this idea because their culturing methods do not find a consistent species of bacteria. There are two labs in Northern VA that will do a broth culture: Fairfax Medical Lab and United Medical Lab. I do not know of any other labs in the country that will do this for urine except Dr. Paul Fugazzotto, retired microbiolgist.

If you have any questions or would like more information please email me: mfmidlo@aol.com. I would be happy to explain more about the theory and research currently being conducted.

Martha F

[Tia2]

I have not been diagnosed as IC but I have had UTI symptoms for about 3 years. I took macrobid for 1 1/2 years and had a very bad reaction. It gave me daily stomach cramps and diarhea that lasted for at least three months. A new doctor switched me to a generic version that was much less harsh on my stomach. He said it could have been the dye in the pill that caused my problems. It's ironic since some think IC may be caused by environmental/chemical exposure.

I quit taking antibiotics because it didn't seem to be working. I have gone all natural and take a kidney rejuvination tonic that I order on-line from an Ayervedic practitioner. I encourage everyone to read about Ayervedic treatment, I just happened to find a book at the library. I also drink a tea made of ginger that I feel stenghthens my body. A weeks worth of ginger root costs less than a dollar at my grocery store.

My New Year's resolution was to take charge of my body and so I do yoga, drink water, watch my diet and make sure I get plenty of rest. I am not cured but feel like I am getting better.Take care, Tia

[ICNDonna]

You are absolutely correct in stating that this is a controversial treatment. I have seen reports from people who are in remission, which they feel is due to long term antibiotic therapy. But I have also seen reports from people who have had disastrous results where long term antibiotics have resulted in antibiotic resistant bacterial infections.

I know one individual who has extremely severe yeast problems as a result of antibiotic therapy over a long period.

The best advice I can think of is to do your research, examine the information you find, then make your decision based on that research. I definitely encourage anyone going this route to work closely with a trusted physician and have testing done frequently to help avoid resistant infections.

My problem with antibiotics is that I tend to develop allergies to medications; and concern that at some point I may have a serious condition requiring an antibiotic that my system won't tolerate.

Sending warm healing thoughts,
Donna

[sleepyangel30]

i would be afraid to be on long term antibiotics, they can cause more problems, my aunt work at a nursing home and she told me that this man was on antibiotics for a long time and it caused him to go deaf.