hidden UTI? - Interstitial Cystitis Network Support Forum

dminton · 01-14-2004, 12:41 PM

I just need to report that I took a 3 day course of Cipro Jan. 2-4, as well as an antibiotic each and every time I have had intercourse since then, and I have had 2 virtually pain-free days in a row for the first time since April 2003!!! EVERY SINGLE urinalysis I had between now and then has been negative for bacteria, or showed counts too low to treat. And I had them once a month, on the average.

I am coming to the conclusion that I can harbor small amounts of bacteria that are too low to catch on a UA but that wreak havoc on my IC.

I have to add that I had one DMSO treatment on Jan. 6 as well. I suspect that perhaps a combination of the Cipro and DMSO both helped me start to feel better. But the Cipro helped within 2 days, before the DMSO. It took a full week after the DMSO to be pain-free, and what a different world it is. I don't know how long it will last. I even have a referral in to a pain specialist, and now I don't have any pain! I intend to keep the appt. just in case things get dicey again.

Anyone have similar experience with the UTIs?

rnewman · 01-14-2004, 01:55 PM

PLEASE read some of the past posts on antibiotic therapy.

Here is one that has a lot of information that I want to share with you.

http://www.ic-network.com/cgi-bin/ub...;f=15;t=000193

I have figured out where 'my IC' came from, and I believe that a long term/low count bacterial infection is a part of my 'ic' problem.

Hope this helps.
Rachel

***ICNDonna*** · 01-14-2004, 03:36 PM

I have had very good luck with DMSO. I think it's what keeps me going. I don't like to take antibiotics unless I absolutely must --- I have already developed allergies to penicillin and sulfonomide --- I have to be a little concerned that one day I might badly need an antibiotic, only to find I have developed another allergy.

Warm healing thoughts,
Donna

havingsuccess · 01-14-2004, 08:44 PM

I am happy to report that I just got a clean culture back from Dr Fugazotto, so I will now stop the antibiotics and start the probiotics and enzymes to clean out any yeast and rebuild my intestinal bacteria. I have been symptom free for 4 months since starting the program and I was on the program for almost 5 months. My symptoms were mainly urethral and I am convinced I had bacteria in my urethra that routine labs were not culturing for and therefor did not find. Dr F found these and after treatment they are now gone. There are many different knids of antibiotics that doctors don't routinely prescribe because they don't want people developing resistance to them so it's pretty safe to say if someone were to develop a resistant infection there would be an antibiotic to take care ofit, but if your dose is carefully monitored and adjusted as needed that is very unlikely to happen. Good Luck!! It feels good to feel good!!!!

Success

**ICNJess** · 01-15-2004, 02:18 AM

I'm not trying to stir anything up or anything, just mostly curious. Would like a lot of antibiotics be damaging? They always warn of overuse of antibiotics. I took Cipro for a few days, and felt a little better because of it. This was a while back, is there an anti-inflammatory property to the med?

dminton · 01-15-2004, 04:08 AM

I just spoke to my friend who is an R.N. and lactation consultant. She works with women who have mastitis. She says that they routinely get better within 24 hours of taking an antibiotic, and their cultures come back negative. My friend believes that antibiotics have anti-inflammatory properties.

So, who's to say what is really going on? At any rate, I agree that is best not to use antibiotics unless they are really needed, but if you also subscribe to the belief that you shouldn't take them without numbers of bacteria on a lab sheet in front of you, you may miss on an opportunity of feeling a whole lot better, which is a very valuable situation, as I can vouch for. Also, you can take an antibiotic like Macrobid with intercourse which is more specific to the urinary tract.

P.S. rnewman, check your private message box, it's full!

rnewman · 01-15-2004, 04:32 AM

Thanks for the heads up, I cleaned it out wink

Rachel

lm2 · 01-15-2004, 04:40 AM

Yes, I sent you one a while back and wasn't sure if you read it.

havingsuccess · 01-15-2004, 07:38 PM

Some antibiotics have an anti-inflammatory effect but not as much as Ibuprofen or atarax. I believe it's the anti-bacterial effect not the anti-inflammatory effect that helps. Opinions vary of course, but I am healed because of it and would certainly do again rather than subject myself to harsher methods. Of course if this had not worked I would resort to anything to feel better. Good Luck!

Success

lyaeger · 01-22-2004, 06:57 AM

I am currently taking one macrobid after intercourse because I almost always get a UTI from sex. When I get a UTI I tend to bleed severly from the infection. I usually get a culture but didn't this time. Does anyone know if the ulcers from the IC could be causing the large amount of blood?

dminton · 01-22-2004, 01:56 PM

Hi, Leah, sorry I don't know the answer, but it's a good question. Diana.

rachelm · 01-22-2004, 03:12 PM

I too get many culture documented infections. Last year in a 3 mo time period I had 8 cultures come back positive for inf. I seemed to get over an infection and be cleared by a culture and then 2 days later get symptoms again. Sure enough when the culture came back it would be another one. I went on 1/2 bactrim a day for several months and it got better. In fact I didn't have an infection for 4 months. Unfortunately in the past several months I have gotten a few but I go in for a culture as soon as I feel one and start on antibiodics within 24 hrs. I get cultured 1x a week during my flare season (now) and sometimes more if I feel one. I'm always having to remind my nurse that if I think I have an infection I usually do. I've only been wrong 1x. They don't want me to be on antibiodics unless I have to so I don't become resistent like you all were discussing. She will tell me "you just had a culture 2 days ago and it was clear." I just remind her of last winter where I got cultures sometimes more than once a week and would not have one but 2 days later it would be there. Do any of you get recurring UTI's this badly? Mine seem to be worse in the winter/spring.

I bleed too sometimes because of the irritation from the infection to an already injured bladder. I've found that a little lidicaine on the urethra can help the outer burn that I get.

mayray518 · 01-23-2004, 04:57 AM

If I remember correctly there was a broth culture test a uro could perform to see if there were bacteria. the test detects bacteria that doesnt show up in a normal urine culture.

MarthaF · 01-23-2004, 10:50 AM

There have been many media reports of reseach being done by Scott Hultgren, Ph.D. at Washington University in St. Loius on the stages of a UTI. He has found that groups of bacteria adopt an inactive state and "may create reservoirs of infection within the bladder that might be responsible for some of the recurrent UTI's" They may form pods and then organize into another shape which could function to evade the host's immune system or facilitate further infection within the host.

Hultgren spoke at the ICA/NIH convention last November. His work is groundbreaking and it is encouraging that they are making progress on the understanding of recurring UTI's.

Martha F