Question on Infection/Antibiotic

[CaseyG]

Hi,

It has been awhile since I have posted and I am sorry for that-mostly due to the fact that I have been "managing" my frequency by basically not drinking hardly anything and knowing where every bathroom is.

Well, on July 6th I went in to my primary doctor quite certain I had a bladder infection (I can't remember when I last had one) and she said "yes" not only are your red blood cells high (normal in IC'ers) but my white were too! She put me on Cipro and said I will send your urine out to be cultured and I will only call if you are on the wrong antibiotic!
Wll after 4 days, the burning was gone, but the frequency was still terrible-every 20 minutes and so was the urgency! If an IC'er is complainig about the frequency-you know it's bad!
When I called my doctor back she said the lab never even got my results! She sent it out but they never got it, so who knows where my sample is?

Wll I went back and gave another sample (after finishing the Cipro) and it came back showing no infection-all clear. I am so confused I am still going every 20 minutes and the urge is bad!

All my doctor could say is, try pyridium because maybe my bladder is spasm still. If that dosen't help, it's prbably my IC and go see my Urologist!

Well, I just think that seems correct. I havent seen my Uro in prbably 5 years (she moved to CA) AND I have been sort of managing on my own and read the boards for any new treatments.
Now I am expected to beleive that I get a bladder infection and it's probably a sign of my IC getting worse? (her words-not mine) and now I don't even what caused the original infection (since the labs were lost).

Please help does this seem right? I get an infection and now I am supposed to live with this horrid frequency (as if my IC didn't cause enough) but now it's like three times as bad!
Can you really just get an infection and then just-that's it now your IC will be worse?

Should I ask for another antibiotic?

Sorry for the long post!

I really appreciate any help!

Desperate here.

Casey

[GriffsMommy]

Casey,
I personally don't get infections myself. I have only had one documented infection in my life when I was in college long before my IC symptoms started.

I have however heard other people say that if they get an infection it can make their IC flare. So perhaps you really did have an infection and then the infection caused your IC to flare up more than your normal symptoms and that is why you are having the horrible frequency.

Just a thought, I would look into finding a new uro though because if you're in a flare now might be a good time to find new treatments. Hope you feel better soon :grouphug:

[windwalker]

I've had three or four infections since diagnosis and my uro told me it takes an ic bladder longer to feel better than one that doesnt have ic. Try the pyridium OR if you can, 1/4 to 1/2 tsp baking soda in 8 ounces of very cold water. Sorry you still have the frequency. Try to get rest and relax as best as u can.

[mich2604]

could it be a yeast infection? that would set off my bladder.

what happend to you , happend to me at the beginning of this nightmare. The lab couldnt do the test because it was contaminated, i was put on an antibiotic, then did another sample and it was clear. I never found out what caused it.

Hang in there.


oh it could also be cipro wasnt good for the infection you have.

[MarthaF]

Hi Casey,

If you look up some of my past posts here you will find that many of us believe our symptoms are really due to an infection that has not been found. That is, the current lab cultures are not adequate to finding ALL SPECIES of bacteria. There is another kind called a broth culture that is much more extensive.

It was unacceptable that your culture was never reported back to your doctor and to you! But it might not have shown bacteria since many of us have been told we do not have bacteria when it is just that the short culture done by labs cannot find some kinds of bacteria. Also it is important that the species be found so that the right antibiotic is prescribed for you. Not every antibiotic will treat every possible kind of bacteria. And those of us who have used antibiotics have found that we have to take them for longer than two weeks or so to really get rid of the infection.

Please send me an email if you would like more information.

Martha F (mfmidlo@aol.com)

[CaseyG]

Thank you to everyone for your replies. They certainly were quick! :)

I guess it really just through me for a loop when....I got an infection and ever since my frequency is just terrible! So far the pyridium dosen't seem to be doing much. Of course I am not drinking much water like it says to because- at work- I can't aford to be in the bathroom that much!

If I understand what most of you are saying...this infection really is only causing my IC to "act up" and it should get back to "my normal" soon?

My primary doctor made it sound like the infection could be a sign that my IC is at a different phase now (worse)?
Any thoughts on that?
Thank you again,
Casey

[dbritts]

Hi Casey,

My urologist has never said that having a UTI means that my IC is worse. He says that our bladder linings are a lot more sensitive because they're damaged, so even if the infection is gone, it might take longer for the pain to go. It also takes lower levels of bacteria to irritate a damaged bladder lining. But I would also agree with Martha--if you have e.coli, it will show up on the standard agar culture that urologists order. but if you have something like enterococcus or staph, it won't grow on a standard culture. If your symptoms continue, you might want to get under the care of a urologist and ask for a more advanced culture--my dr. orders a resin culture and it seems to catch pretty much everything. Good luck and hope you are soon pain-free.

Debbie

[MarthaF]

Debbie,

Can you explain what a resin culture is. No one I have talked to has heard of it and it might be an alternative for some to request. Do they do a sensitivity test so you know which antibiotics the bacteria are sensitive to?

In general, I only know of one lab that will do the broth culture. The doctors seem to trust the traditional agar plate test but it just doesn't find all bacteria; or even it is shows other species the labs report only E. coli since that is what they have learned is the cause of all UTIs.

Thanks for any information you can share on the resin culture.

Martha

[ICNDonna]

I just googled "resin culture" and there were dozens of results. I'll go back and review later today, but this morning I'm pressed for time.

Donna

[dbritts]

Hi Martha,

I called my sister who works in a medical lab to see if she might have more information. It's basically what I said--just a different medium to grow bacteria in. My sis said that there are lots of different media to pick up different organisms. Donna's right--you can pick up a lot of results if you "google" it. I actually found a patent pending for a resin culture that will still identify the bacteria while a person is on antibiotics. They've combined two different resins to get those results. Pretty exciting!! I've got a lot of my culture reports so I compared my resin cultures to the two broth cultures that have been done. They are set up in the identical format. First: the organisms found--then for each organism there is a list of antibiotics, the dosages to take by IV or orally, whether the organism is resistant or susceptible, then a RX cost with $ from $(least) to $$$$ (most) expensive. And finally your M.I.C. score which tells you which antibiotic is most effective. The last page always shows whether the organism is susceptible or resistant to a Streptomycin Synergy Screen or Gentamicin Synergy Screen. I hand carry them to the hospital with the orders, so they have them within 30 minutes. Actually my dr. prefers a cathetered specimen, so he feels comfortable that the urine hasn't been contaminated. He started ordering these when the standard ones came back negative, but he would see the bacteria under the microscope. The one positive thing that's happened out of this is that when his practice has a person coming in with frequent UTIs, the drs. are ordering resin cultures for them. My personal theory is that urologists expect UTIs to be caused by e. coli, so they continue to order the agar plate culture. Martha, I know this is long, but I hope it answered your questions.
Debbie

[mich2604]

could a dr order this from any lab? would they have to specify resin?

[ICNDonna]

Thank you for the explanation.

:)
Donna

[dbritts]

Hi,

I don't know if only hospital labs have the resources to run resin cultures. I can try to find out from my urologist. You might call some of your local labs and ask if they do resin cultures for urine. You do have to have an order that says resin culture. If you're having alot of UTIs, and your culture keeps coming out negative, then you should definitely ask for a resin culture. Also find out if your uro sees bacteria under the microscope--that was the turning point for my dr.

Debbie

[StephanieS]

is the baking soda safe to drink for frequency and pain? I won't use meds so I am very curious because I am in a flare now.

[Anthrop42]

StephanieS,

I tried baking soda (dissolving some in warm water) - didn't do anything for me, but seems to help some people. You're not supposed to use it if you have high blood pressure or some kind of problem where you need to limit salt intake.

Aline

[Anthrop42]

Just a comment on UTIs - if you are taking pyridium & the lab tech at the doctor's office looks at your urine under a microscope, they won't be able to see bacteria. At least that's what a few clinics told me.

Aline

[bmendoza]

Casey, Is there a possibility that it is a side effect of the Cipro. It seems to me I have read that somewhere. It might be a good idea to check the list that comes with your prescription. If you are anything like me, if I accidentially take something bad, it takes days to get it out of my system. Especially if it is chemical related. You know like MSG, pork, turkey, etc. Hope this helps. Brenda

[Vampireness]

Casey, I know how you feel, when you're so sure you feel like there is an infection but nothing shows up in your culture. I would email Martha, if I were you, and get a culture done by United Medical Lab just to rule out any bacteria, the lab might have missed or ignored.

I've been through it and I can't express how much I dislike the testing since I'm finally feeling alot better than I previously was. Getting bacteria treated as and when infected is really important and better yet, the bacteria showing up is very important.

When you're given a broad spectrum antibiotic, that's great if your bacteria is sensitive to it but if your culture came back negative and if there was some bacteria there, and wasn't detected, that's a shame. I would get better testing and sometimes, when you start antibiotic you could feel worse, due to yeast and stuff, so garlic or getting Nystatin prescribed would be good.

PM me or Martha if ya want to know more about broth cultures.