Anyone else have chronic UTIs?

[steph4308]

As soon as I'm off antibiotics another UTI flares up. Even when I'm on a prophylactic dose of Macrobid. It's not always the same bacteria either. Can't always tell if I'm having a flare or a UTI; have to have cath. cultures in order to find which antibiotic will work. I have trouble with the bacteria being resistant to antibiotics. It's getting very expensive (not to mention depressing) and there is a huge lag time between culture and results (about a week).

I've tried d-Mannose, CranActin (burns my bladder), drinking gallons, don't drink soda, you name it. I rival Howard Hughes when it comes to keeping clean, I hardly ever have sex--what's the deal???

Waiting right now for culture results--been having this since Thanksgiving.

[MarthaF]

There are many fine points to treating recurrent UTIs. I have been researching this for years and could put you in touch with a practitioner that specializes in this area. She has been a patient herself and has now set up a practice in the DC area. She can consult by phone, uses a lab that does a broth culture which is very extensive, and can prescribe. She has taught pharmacology to nursing students so is well-versed in meds. There can be complicated infections due to the layering of bacteria and it takes time to treat them but you can get better.

Please PM me if you want more information.

Martha F

[Babs RN]

I have pretty much had monthly or every other month UTIs that turn into pyelo about 80%of the time. I should have bought stock in antibiotics. Of course, who wants to form a superbug either, right? My current uro found some anatomical issues that need to be repaired and "spruced up" that hopefully will cut down on my infections. Luckily I have had enough that most times I can stop them in their tracks before I get really sick.

Hugs,
Barb:smile tee

[AZMARY]

Yes I do have many UTIs am currently taking a daily antibotic which we are hoping will prevent another. Has anyone else tried this?

Taking 50 mg Macrodantin. Just started a couple weeks ago so can not be sure it will work.

[MarthaF]

Recurrent UTIs have been studied extensively, especially by Dr. Scott Hultgren at Washington Univ. in St. Louis. You can find more information on his work by searching the internet. His lab found that E.coli can form "pods" or biofilms where the bacteria can hide from treatment, only to re-emerge to cause another infection. He spoke at the 2003 ICA conference during the NIH symposium held in conjunction with the meeting. So at least someone saw UTIs as a facet of IC or he would not have been the keynote guest speaker at an IC conference. There were several ICN personnel in attendance.

And last year I found a very interesting article on research done in Japan in which they found many Enterococcal infections (Enterococcus is a form of Streptococcus) in many urology patients in a hospital there. Furthermore, they discovered that these were usually in the form of a biofilm and they then noticed that there were also many other species of bacteria within the biofilms. The complete article in available on the internet. From this we could deduce that other bacteria could escape the biofilm and cause infection in the bladder. I wrote to them and they replied that "IC is not well-known in Japan". But most (or all) researchers studying bladder infections do not consider IC as an infection. We can only hope someday they will look at the two together. There are many similarities. One that should stand out is the fact that it is mainly women who suffer from UTIs, and likewise it is mainly women who suffer from IC. Anatomy is a huge factor as one urologist posted here years ago. Some of you may remember Dr. Jack Cassell, a urologist, who took the time to post his opinion that IC could well be an infection and he treated it as such. He was pretty much shouted down by many who seemingly did not want to hear this and he has not returned to the message board. He wrote a book called, "Better Living Through Urology". I think some urologists intuitively think of UTI when they first see chronic bladder symptom patients. The problem is the labs do not find bacteria due to inadequate culturing and the doctors are hard-pressed to treat with an antibiotic since they do not know what they are treating. Even a short course may not produce improvement if the infection is deep-seated and long-standing. My urologist could not find bacteria although I had chronic symptoms, and he did not ever try an antibiotic. He did agree to treat me after Dr. Fugazzotto, a retired microbiologist, found Enterococcus via a broth culture. I responded to this antibiotic treatment.

Many of us believe that chronic bladder symptoms, diagnosed as IC, are really undiagnosed bacterial infections since some species are hard to find on the typical lab culture. I would recommend a broth culture which is much more extensive. (United Medical Lab in McLean, VA is the only place to have these done).

My understanding is that Macrobid is not strong enough to treat many bladder infections, especially if Enterococcus is involved (and it often is but is undetected). Macrodantin is a much better antibiotic in the same class. I am not a medical professional and your doctor could assess this.

Martha F

[jen74]

I just got over a UTI a couple weeks ago and feel like I am getting another one. I dropped off another urine sample this past Friday and hope to get the results today. I also am very clean and have not even had sex in months so I have no clue on how I got a UTI. I think with the IC, we have no protective layers in the bladder which helps protect against infections and bacteria. Like people with stomach ulcers, they dont have that strong barrier that protects the gut from the harsh acids and therefore they get ulcers. That is the only thing that makes sense to me.
My mother in law thinks that when I had this last infection, the doctor should have kept me on antibiotics for a few weeks just to make sure the infection was gone. She thinks that 7 days is not enough, though after being on the antibiotics for three days I had a repeat culture and it was clear. But maybe the cultures are not that senstive to pick up tiny amounts of bacteria.
I thought about asking my urogyne about taking a daily dose of macrodantin to prevent UTIs. I just hate the idea of being in anti-b's for any extended period of time as we can them become resistant to them. I hate this disease. I honestly think the infections are because of the IC itself. I mean since out bladders are damaged it makes us more suseptible to picking up an infection. Probably any little bit of bacteria that gets in can take hold quickly because our bladders are in such a weakend state and it makes it easy for the bacteria to multiply. Just a thought.
Jen

[MarthaF]

Jen,

I don't think you can trust that the usual lab test of 24-48 hours can find ALL bacteria and that is why I advocate a broth culture. Some bacteria does not grow in 48 hours. I don't know whether bacteria are the whole story but at least ALL species should be found. Our reseach found Enterococcus in a majority of patients and a sensitivity test should be done whenever any kind of bacteria is found. Some species of bacteria require antibiotics that are not the usual UTI type.

I have posted this several times but will repeat. UCLA is developing a high tech test to find UTI bacteria since they realize that the typical agar plate is not adequate:
http://jcm.asm.org/cgi/content/abstract/44/2/561

Why would they develop a new test if they feel the current testing is adequate?

Also, I meant to point out that Hultgren's lab has been using mice in its research that found the pods. Hopefully they will move to human testing. The Japanese used human patients.

No matter why some of us are susceptible, ALL bacteria should be found and treated correctly. We know many women have bacteria in their bladders without a problem, just as many have H.pylori in their stomachs without ulcers. There are triggers that cause some of us to be susceptible and we hope to figure those out eventually. But it would be helpful if all species were found, at least, and treated as early as possible.

Martha

[AZMARY]

Thanks for your input everyone - especially Martha. I feel better about my course of treatment.

It is great to hear from others with IC. I am spending a lot of time reading posts.

Thank you all for your input.

[flo_55]

Martha,
What dose of antibiotics do you take? Small maintain dose or high dose? How long time have you been on it and how is the improvement so far?

[MarthaF]

Since everyone is different there is no set dosage, type of antibiotic, or length of treatment for this approach. It depends on the type of bacteria found, what the sensitivity test shows on the culture report and the inidividual (weight, etc.). This is why I recommend working with the nurse practitioner and former patient who specializes in treating IC patients who show bacteria in broth cultures. She is very experienced in this approach since she had infection herself many years ago and by researching learned about the broth culture and how to treat bacterial infections of long-standing. I will say that it requires longer than 10 days or two weeks, and she uses some supplements to help heal the bladder along the way. Each person responds in a different time frame and she will follow your progress and adjust appropriately. She has taught pharmacology so knows meds very well.

Hope this helps. Please PM me if you want more information on how to reach her to discuss your own situation.

Martha F

[Vampireness]

I want to wake this thread up lol

I asked Ruth on why, I'm getting reinfected with Klebsiella and she said it could be in a biofilm.

How are biofilms treated? I do believe that I could have a biofilm with several different bacteria in there, since I've came up positive with many different organisms.

[MarthaF]

You did wake up an old thread. I notice that I have posted on this before so I won't repeat. Biofilms are a big topic today and the best article I have read about research inot biofilms is here:
http://escholarship.lib.okayama-u.ac.jp/cgi/viewcontent.cgi?article=1297&context=amo

The research was done in Japan a couple of years ago. They did find that some biofilms were polymicrobial so that could explain why some of us have many different species of bacteria that appear more than once. Bacteria can hide in the biofilm just as they have found E. coli hide in the "pods" discovered by Hultgren's Lab several years ago. There is research on the internet about their work at Washington Univ.

The trick is to figure out how to treat the bacteria. It is hard for antibiotics to penetrate a biofilm - they treat the bacteria that are free-floating in the bladder and can be detected by culture. Research is ongoing in the area of biofilms. They can be any place in the body. Try some researching to see what you can find out. I know they have found biofilms in BV and that is one reason it is hard to get rid of.

Martha

[Vampireness]

Ruth is actually prescribing EDTA? I went to research on it and it's actually used for heavy metal poisoning and to break down the biofilm, according to Wikipedia.

She hasn't prescribed me with anything to help biofilm. I have asked her and am awaiting her response. Though, I'm not too keen on taking EDTA....more prescription drugs...

Umm....I read the study Martha, it's pretty interesting and LONG lol and where is the conclusion on how to treat biofilms? I think I've read something similar to this before.

I also saw antibiotics such as amphicillin and Nalidixic Acid do the job along with EDTA and lysozyme too. Seems like a combined treatment.

[Anthrop42]

One area being studied in biotechnology is the use of genetically modified viruses to attack bacteria biofilms. Doesn't help us at this point unfortunately.

Aline

[Vampireness]

Oh oh I just realised I haven't replied your email, I will do that after this post. Sorry Aline.

That's one thing I don't like about studies, because they don't benefit us at the current moment, and well there are treatments available currently right, like the above mentioned to treat biofilms. I mean we can't simply wait around till their study is approved and that whole procedure takes years, maybe even five?

But, I do look at studies and the chemical they use or their method and try to find something simliar.

[curlycue]

wow intresting info.

[Ginny]

I usually get 1 UTI a year. Antibiotics help.
Many years ago (I am dated myself) they use to say Macrodantin was not good for someone with IC. There were 3 antibiotics they said not to take. If you have Larrian Gillespie's book I believe it is in there.

Ginny

[MarthaF]

I just read an interesting article in the ICN Newsletter The Optimist. This article discusses a presentation at the latest American Urological Association meeting on Biofilms and UTIs. The speaker was J. W. Costerton, PhD, of USC. He discusses the fact that they are studying the formation of biofilms in bladders and these can hide bacteria and protect them from treatment by antibiotics. So they are looking a ways to break up the biofilms or to prevent them in the first place. Biofilms are already known to be a problem in BV.

The article points out that this phenomenon of biofilms may lead IC researchers to take a second look at the possible involvement of bacteria in IC. The mainstream have dismissed bacteria because they have not been able to find a consistent species of bacteria in chronic urinary tract symptomatic patients. Now there is better testing and many of us for years have used broth culturing to find bacteria - mainly Enterococcus. It is hard to change the thinking on the connection between bacteria and IC but more and more evidence is leading in this direction. The huge EPIC study at the U of MD has found over 50% of patients questioned said their symptoms started with a UTI. Now that biofilms have been found in bladders this can explain why bacteria are hard to culture and why people have recurring symptoms.

The challenge is to break up the biofilms in order for the antibiotics to treat the bacteria and that seems to be the next step. Still many remain to be convinced that bacteria are a factor. We now know there are better cultures at both Quest labs and LabCorp but most doctors do not seem to know about them. Patients have had to learn about these on their own. I think with time the evidence will be there even if the patients, themselves, have to lead the way.

Martha

[dbritts]

I might as well add my experience for what it's worth. I saw my urologist today. He took me off antibiotics last Tues. and had me come to the office for a catheterized urine specimen on Monday. He decided to go all out and check for bladder TB, viruses, bacteria, and fungi. I went in today for results. The culture wasn't quite done because of the extensive testing, but the bacteria had come back gram-positive. I'm waiting for full test results and antibiotic sensitivity. He'd also received a letter from UAB--their Infectious Disease drs. said they have no treatment to offer for chronic enterococcus at this time. Wake Forest Infectious Disease drs. also said the same thing. I've been researching enterococcus for almost 4 yrs. All antibiotics are doing is suppressing the bacteria. Enterococcus has become virtually resistant to amoxicillin, cipro and macrodantin. I think it's vital to be cultured for all bacteria if you have chronic UTIs. After reading the posts on this board, I've come to the conclusion that few urologists look further than e.coli. My dr. finds enterococcus in other patients, but he said he normally gets rid of it. Maybe early detection would help. I feel that the combination of a damaged bladder lining and underlying immune issues that some of us have cause complicated bacterial infections that can not be successfully treated at the present time. I've read Dr. Warren's comment in Oct. 2000 that low-level bacteria can persist in the bladder and cause a low-level inflammatory response. He further stated that when you have a flare, work with your urologist and microbiology laboratory and identify even small numbers of organisms in the urine and treat those organisms with antibiotics. How many women diagnosed with IC or chronic UTIs get that kind of treatment? Martha mentioned that the EPIC study is taking another look at bacteria. I hope our drs. can be educated to look beyond the dipstick and agar culture so that patients with enterococcus infections don't slip through the cracks like women and men with IC did for so many years. No one really knows what causes IC. There are a lot of theories. It doesn't really matter if enterococcus causes IC, is a result of IC, or you have chronic cystitis caused by bacteria such as enterococcus, you deserve a comprehensive work-up for all bacteria. Good luck to everyone dealing with this frustrating problem.

Debbie

[Vampireness]

Ginny - Nitrofurantoin, is an advanced treatment for most bacteria, I have. Makes my bladder feel better but not my stomach or myself from feeling extremly drained. I don't have that book, you mention and have never came across recommendations not to take the drug, it's interesting...

Martha - That study is so interesting and I am glad it finally came out in the ICN Newsletter, since many people are skeptical of the connection and also discouraging when you wish to pursue further testing. I hope some answer shows up on how to treat biofilms and also, there could be a natural way to treat it, a herb of some sort? I'm hoping..... After all, most RX and OTC medications, were discovered from studying herbs but when science evolve, chemicals and other approaches are taken, leaving behind herbs.

Dbritts - I'm really glad to hear your doctor was willing to go all the way to check for everything possible that's causing your symptoms. I wish mine did, but instead they told me I don't have an infection, though the culture low colony count of mixed bacteria. I was told, I don't have an infection.....I "like" when you put your trust in them and they just, lead you in the wrong direction......
You mentioned, he treated Enteroccoccus before, what medication did he use, do you know? Have you got your results?


I recently, wrote to the Head doctor of Rehabilition Centre, to ask about Myosfascial Release and Acupuncture and after stating, that I went on for four years with bad testing and several different diagnosis and have been discharged from several doctors. I mentioned, I am finally getting proper testing from United Medical Centre and being treated by Ruth ****, but instead his first response was to look for a good urologist and find out how I got this recurrent infection.....and follow their treatment plan.....

What the helll...really...goodness sake for years, I was thinking I'm insane (didn't know anyone else who had it), because one doctor told me, I was probably anxious and thinking too much and that was causing me to go and my family doctor told me, I have to live this way and then referred me to a Gynaecologist and she gave me something to control the bladder and that didn't work.....I think it made me retain. Then, I go see a Urologist and she just sent me back to Gynaecologist and then I went to see another Urologist and she did some test and then wanted to discharge me right away and I had to ask her to do a cystocopy since she was ready to let me go, at the third appointment, telling me she can't do anything for me and that I have an overactive bladder. She gave me one drug, which was Tolterodine I think and I was taught how to do Kegel exercise and ended up hurting like hell holding back my urine till I reached 500cc, since I really had an infection, which she said, I don't. Then, she refers me yet again, to a Gynae..... What the hell really....I am being tossed between Gynaecologist and Urologist. I then decided to go see a Urogynaecologist, so they can stop passing me around, and she wanted me to repeat one test several times, though she clearly saw I do have recurrent infection and also told me I do, at this time I found Ruth **** and she knew what she was doing. This doctor though, she diagnosed me right and wanted to try long term antibiotic, she didn't put me on anything to help with yeast...I don't understand why they don't care about yeast, when they prescribe antibiotic.

Man, seriously....damn mainstream method and their unprofessional practice!