Different question for antibiotic users

[dbritts]

Hi--

This may have been addressed on this board, but since I'm pretty new here I would like to ask: Did anyone get a diagnosis of IC, have no bacteria in their urine, but start getting recurrent UTIs after a number of years had passed? I started having symptoms in 1989, and was officially diagnosed with IC in 1994 through biopsy. No bacteria and no response to antibiotics of any kind. Started Elmiron before it was approved and after a year, my IC was almost nonexistent, except for occasional flares from food or intercourse. Alot of my flares were actually coming from PFD which was diagnosed in 1996. In 2004 , I began having bacteria, blood in the urine, and responded to antibiotics, even though the standard culture was negative. My dr. finally ordered a resin culture and that's when he found that I had enterococcus faecalis and methillin-restistant staph. I've had predominately e. faecalis for the last year. Mine is most suspectible to Cipro, and Amoxicillim is 2nd. I have to switch back and forth between the two or I build up a resistance. I've been on the two of them for 4 months now. I start flaring, a new culture is done and then we have to change antibiotics. Has anyone else experienced IC without bacteria and then developed a long-term infection later?
I just got back from Infectious Disease at Univ. of Alabama in Birmingham. Their concern is developing vancomyacin-resistant enteroccocus from long-term use of antibiotics. I'm not willing to stop antibiotics at this point, but they did raise some serious concerns. I saw my local urologist on Friday and asked questions about resin cultures. They are available at all hospitals. He said that most uros don't use them because the average UTI is e. coli which will be picked up on the standard agar culture. Because of my situation, his office is now doing resin cultures on anyone having frequent UTIs. He said he's finding a lot more enterococcus than he expected. Hospitals also do broth cultures. He ordered one when he checked my kidneys out because that's a better medium for your kidneys. I'm putting this out for information only, because it's not that our uros can't test for enterococcus, it's just they don't expect us to have it, so they don't go further than the standard culture. I've gone beyond my original question because I don't think it's fair that your urine can be cathetered, be at the hospital within 30 minutes, but drs. aren't doing this for their patients. I guess other questions would be: do anyone else's drs. order resin cultures for them and has anyone else developed antibiotic resistance to Cipro or Amoxicillin? Sorry this is so long-winded!!!

Debbie

[Anthrop42]

Debbie,

Sounds like you have a great urologist who is open-minded. Thanks for the information. I've never had a resin culture done. I only learned of broth cultures back in January from this site and a few others & had mine done in Feb. They found Enterococcus. I started Amoxicillin in March, got a little relief, then big relief when a German doctor told me to up the dose to 3000mg a day for a few weeks. I decreased the dose after 2 weeks & mild symptoms started coming back. Around May, I started taking a combination of Amoxicillin (morning) & Augmentin (night), & that worked fabulous for a few months until late June. I flared with my period, & the symptoms haven't fully gone away. I've been playing with the dosage, took straight Augmentin for a while, but I'm starting to think either the bacteria has developed resistance, or I may have a different bacteria that was hidden by the Enterococcus. I think I need another culture done, but I can't pay for it right now.

Much luck,
Aline

[dbritts]

Hi Aline,

Do you think your urologist would order a resin culture? Mine are covered by insurance and usually cost $5-8. I'm grateful that my uro is open-minded but it's still not curing the infection. Like you, I respond to high doses of antibiotics, but it's not always the same one. And the bacteria is not always enterococcus. I also play around with dosages because I get tired of being cultured all the time, but then the symptoms start being annoying and normally means that I've become resistant to the antibiotic. I read the guest lecture on this site by Dr. Rosenberg. He said he's never had a patient with chronic UTIs without some underlying immune problem. Guess I'll try that direction next. I'm sorry to hear you're battling the same bacteria. Hope you can get cultured soon and see what's going on. Thanks for responding to my post.

Good luck to you too,
Debbie

Don't know if anyone's dr. has mentioned this, but I know a nurse in Spokane who got an enteroccocus infection. He told me to wipe the toilet every time I use it because enterococcus can live for quite awhile on hard surfaces. Also, if you own cats, don't clean the litterbox. Let someone else do it. Wipe down doorknobs, phones, etc. I try to be vigilant about the toilet, but when you go to the bathroom as much as we do it gets old!!!!

[enip41]

I think I have develope resistance to Cypro. I am allergic to Macrobid and Penicillan. I am starting today on one Bactrin a day presumably for ever. Think I am resistant to that too.

[jen74]

I had a culture done to check for mycoplasma and ureaplasma as well. So far they are negative, but I am not sure if it was done as a broth culture or not.
The thing about the antibitoics is, if you take an antibitoic for any long length of time, you do risk becoming immune to it( or rather is will just not work for you anymore),and also you risk becoming allergic to it. This happened to me. I had to take miralax which is polyethelen glycol, it is a laxative. I took it for 10 days and ended up getting hives. I stopped it of course. Well, a month later, I had to take cipro, and I had a reaction( pins and needles and itchy feelings all over). I then was given trimethoprim and had the same exact reaction. I did research and found that they put polyethelene glycol in almost ALL antibitoics. I think I got a resistance to it and now cannot tolerate any little amount of it.
Also, I was told that if you take any antibiotic periodically, this can also happen. Your body will grow antiboides to it and one day when you take it, you will have a allergic reaction. This happened to my dentist. He told me that he was on an Antibitoic for a coupel months and then out of no where he went into anaphlatic shock. So this is a issue.
I have heard that the staph type infections are becoming very resistant to all antibitoics, even vancomycin which is the big guns anti-B. They have nothing else. I just read an article in readers digest about the rise on death related staph infections. It is unreal and it is because of overuse of antibitoics. The bacteria's are adapting and evolving faster than ever. Soon there will be no antibitoic to kill these bugs. Pretty scary.
Anyhow, I think that if you take an antibitoic for a long period of time, like 5 months max, and you still have the bacteria, then you are not going to get rid of it and obviously the antibitoic is not working against that certain bacteria. That is just my thought. This IC is a very tough thing to understand. Nobody really knows what causes it. I also read somewhere that they did cultures on people with no symptoms and they also had these bacteria in there urine. Are they naturally there in everyone? I just dont know. I just pray for a cure to this awful disease.
Jen

[MarthaF]

To answer your comment about the presence of bacteria without symptoms - yes,it is possible. In the case of H. pylori and stomach ulcers they have found the about 30% of the population has H. pylori in their stomach and only about 20% of those develop an ulcer. No one knows why.

In the case of E.coli in the bladder they count the colonies to decide if there is an infection. But when someone has a sore throat and they find Streptococcus they diagnose a Strep throat without counting how many colonies. In the case of Streptococcus and Enterococcus (a form of Strep) even a low number of colonies can indicate and infection.

Bacteria may be in the bladders of many but not all are susceptible to infection. No one knows why but the immune system may be involved. There are probably other factors and it is probably different things for different people. Much more reseach needs to be done.

It is thought that keeping a high level of good bacteria in the intestines and vagina will help. Probiotics are used for this purpose and FemDophilus is one designed specifically for the urogenital system.

Martha

[n2fotography]

Has anyone used Oil of Oregano to fight infection?

: Georgetown University Medical Center
Date: October 11, 2001
More on:
Bacteria, Mice, Infectious Diseases, Pharmacology, Microbes and More, Microbiology
Oregano Oil May Protect Against Drug-Resistant Bacteria, Georgetown Researcher Finds

Science Daily — (Washington, DC) Oil from the common herb oregano may be an effective treatment against dangerous, and sometimes drug-resistant bacteria, a Georgetown researcher has found. Two studies have shown that oregano oiland, in particular, carvacrol, one of oregano's chemical componentsappear to reduce infection as effectively as traditional antibiotics. These findings were presented at the American College of Nutrition's annual meeting October 6 and 7 in Orlando, Fla.

Harry G. Preuss, MD, MACN, CNS, professor of physiology and biophysics, and his research team, tested oregano oil on staphylococcus bacteriawhich is responsible for a variety of severe infections and is becoming increasingly resistant to many antibiotics. They combined oregano oil with the bacteria in a test tube, and compared oregano oil's effects to those of standard antibiotics streptomycin, penicillin and vacnomycin. The oregano oil at relatively low doses was found to inhibit the growth of staphylococcus bacteria in the test tubes as effectively as the standard antibiotics did.

http://www.sciencedaily.com/releases/2001/10/011011065609.htm

[dbritts]

Hi,

A friend suggested that I try it to see if I could clear out the enterococcus. She uses it for yeast. She swears by it when she feels like she's coming down with any type of cold or flu symptoms. I admit I didn't try it because she told me that you have to get used to the burn sensation on the tongue--I instantly thought "burning bladder"! After reading the link you posted, I think I'll give it a shot. Great link. A lot of interesting reading. I'll pick some up at the health food store tomorrow and post if I get good results.

Debbie

[n2fotography]

Hi,

A friend suggested that I try it to see if I could clear out the enterococcus. She uses it for yeast. She swears by it when she feels like she's coming down with any type of cold or flu symptoms. I admit I didn't try it because she told me that you have to get used to the burn sensation on the tongue--I instantly thought "burning bladder"! After reading the link you posted, I think I'll give it a shot. Great link. A lot of interesting reading. I'll pick some up at the health food store tomorrow and post if I get good results.

Debbie

Maybe the enteric coated tablets would be best.