New research article

[Martha13]

This is an abstract of an article on some new research just published in the July issue of the Journal of Urology:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15201781

This is the abstract and for those interested in more information you will have to find the Journal. (It is worht your time to try to find it). I went to my hospital librarian and she copied the whole article for me. They treated 103 symptomatic patients with Doxycycline for a month and 71% were completely better or improved. They did not find many with bacteria (am sure they did not use a sensitive culture like broth) but treated anyway. Doxycycline is not usually useful in the typical bacteria found in broth cultures and they speculate they may be treating some harder to culture bacteria like ureaplasma, Mycoplasma or chalmydia. They treated sexual partners for 2 weeks, also.

While this is not a final answer it does raise the question of why antibiotics are so helpful for some patients. And these were long term patients over the whole age spectrum. At least those of you who are interested could bring this up with your doctors. Most have dismissed any possibility that our symptoms are related to bacteria, but no test so far has used broth culturing to identify hard to culture species and treated patients with the right antibiotics for a long enough time. The Warren study done 4 years ago treated symptomatic patients (25) with 5 different antibiotics for 3 weeks each without having any clue what bacteria they were treating. My information says 48% improved (while this above mentioned article quotes 80%+ which I think is incorrect). But Warren, et al, did not think this was "significant". I am sure if you were one of the 48% you would think it was.

And 48% is a better rate than Elmiron. Please try to encourage your doctors to look at bacteria as a possibility. We now have two labs that will do broth cultures. I keep reminding them of the stomach ulcer story.

Martha F

[ICLori]

Thank you, Martha. Any info on the dosage per day of Doxycycline?

The reason I ask, is, I am currently taking Doxycycline for ocular rosacea, and I could just up the dosage some....

Blessings, Lori

[ICLori]

P.S. I was just saying on these boards that I started feeling better, much less of a flare, now that I started taking 3 Doxy capsules per day instead of just 1 or 2....my flare is acting a lot like a UTI now, going away with antibiotics...

Blessings, Lori

[ICLori]

This might be of interest...

UREAPLASMA CAN CAUSE CHRONIC URINARY TRACT INFECTIONS IN WOMEN

Gabe Mirkin, M.D.

A recent report from the Cleveland Clinic shows that as many as 50 percent of women with chronic urinary tract infections culture out a bacteria called Ureaplasma, and can be cured by taking either tetracycline or erythromycin antibiotics or both.

When you complain of burning on urination, feeling like you have to urinate all the time, getting up in the night to urinate or having urgency to urinate when your bladder is full because it hurts so much, you usually have a urinary tract infection. Doctors order a culture and often the culture grows no bacteria and your doctor tells you that you have no infection or worse, that you have interstitial cystitis.

Your doctor should know that chlamydia, mycoplasma and ureaplasma bacteria cannot be found on routine cultures and that he should believe that you have symptoms and treat you in spite of the negative culture. This study shows that many women can be cured when they and their partners take Azithromycin or doxycycline, and if that fails, a quinolone antibiotic. (Azithromycin 250 mg once day for 6 to 9 days. Doxycycline 100 mg twice a day for 21 days, or Cipro 500 mg twice day for one month.)

JM Potts, AM Ward, RR Rackley. Association of chronic urinary symptoms in women and Ureaplasma urealyticum. Urology, 2000, Vol 55, Iss 4, pp 486-489. Address: Potts JM, Cleveland Clin Fdn, Dept Urol, A100, 9500 Euclid Ave, Cleveland,OH 44195 USA

[Marlana]

This does pose a huge question. I have always I mean (95%) had the flare after sex with my husband. It just never came on me for no reason that I can remember. I remember having a horrible UTi while I was prego with #2 and it took several rounds of antibiotics to knock out and strong ones at 500 mg each. that was alot for a pregnant woman to take. I wish this was the break we all need. Wouldnt it be wonderful if this would help 48% people. With elmiron at 40 and 48 antibiotcs, we could make a dent in this. This is pretty fascinating.. Ask ICLORI, who has been in a horrible flare for 2 months, she took the antibiotic in double dose and has cut her urination in half. This gives a bit of hope..

[Martha13]

According to the study the patients were treated with 100 mg twice daily for 2 weeks, and once daily for another 2 weeks. they also gave them vaginal tablets (hexetidine or ciclopiroxolamine) once daily for 10 days. The partner was treated with 100 mg of doxy twice daily for 2 weeks and the use of a condom was recommended during the 4 week period.

Wish I could post the whole article since I think it will be hard to find. Urologists should subscribe to the Journal and might be a good source. They should read it for sure.

We are doing research here (VA) using broth culturing and usually find Enterococcus. The researchers are also testing the same specimens with the PCR (molecular) machine and the results should be available by the end of the summer. We have found beau coup bacteria by both methods and yet every other lab says they can't find it. The agar plate has been in use for over 50 years and I would say it is time for a better method, especially for chronically symptomatic women!

We need to push for more research into a bacterial connection since there are so many similarities between IC and UTIs. The differences may be due to a different bacterial species - Gram positive vs Gram negative - which require different antibiotics. Dr. Scott Hultgren and his group at Washington U in St. Louis are doing a study right now on UTIs. I have read the grant they published online and they are also studying Enterococcus. They know Entero causes UTIs in hospitalized patients but do not know that we are finding plenty of it out in the community. It is in controls, too, so there are other factors that precipitate symptoms - probably different things for different people. B J Czarapata says in her interview on this site that she thinks IC symptoms are caused by an opportunistic bacterial infection.

Our researchers here have some other ideas about things to look at in connection with bacteria but it will take time and money. If anyone has any suggestions about funding sources please advise. Just wanted everyone to know that this article was out there and at least another group of researchers is looking at bacteria.

I have read about the ureaplasma urealyticum research at the Cleveland Clinic but it is several years old and there hasn't been anything on it lately, or has there? I know some doctors will not even treat with antibiotics, and antibiotics are not benign, but people do get better and even symptom-free. Read the success stories on icsuccessonline.com. Hope others who have had good results on antibiotics will post their stories.

I think we, and the medical/scientific community, have to be open to any feasible cause. It has been too many years of suffering not to look at every conceivable possibility. Culturing is the critical factor. Broth cultures have been around for a long time but fell out of use. They are more time-consuming and labor-intensive so the big lab corporations don't want to use them. We found small, independent labs that will do them and believe me they are not losing money. Both are near Washington, DC. The complete description of how to do broth culturing is available on the Cystitis Research Center website. It is not rocket science so good labs could easily do it.

Please if anyone has suggestions, etc., about furthering bacterial research let us know. I have set up a fund and have been pretty much supporting it myself because I was helped so much by the broth culture and antibiotics. But I could sure use help and one scientist whose main job is brain tumor research has been helping for 5 years without any compensation. She is a molecular neurobiologist and I wish we could hire her full-time. I owe her alot for being willing to help since her motivation is the patients' well-being. She is working at the Virginia Commonwealth University Medical Center in Richmond.

Wish us luck!

Martha F

[Katrina]

I am very happy with the good news!:) Being on an antibiotic longterm I can't immagine going double my dose....SCARY!!!!!!!!!
I once by acident of my pharmacy took one of my antibiotics double dose and ended up thinking I may have something wrong with my Pancreas because of a blood test and a lot of pain.

Those interested be careful!!!!!!!!!!!!!!!!!

Take Care all.....atleast it does give hope!!!:)

[ICLori]

Thanks, Katrina, it's not as scary as it sounds, because it's only going back to the dose I started at.

With Ocular rosacea, you usually take one 100mg (I think that's what it is) capsule twice a day until the worst of the symptoms are under control. Then you see if between lots of lid washes, hot compresses etc. you can cut back to only one 100mg pill per day. Some ocular rosacea patients can even go one pill every other day but not me, I've had to keep up at least one pill per day and when symptoms sometimes come back anyways I go to the original two pills per day until symptoms subside again. All with the blessings of my ophthalmologist. So for me, doubling the dose - going back up to 2 pills per day instead of the 1 I've been using - is no big deal because it's only going back up to the original prescribed dose. It's not an overdose of any type, you understand.

With Ocular rosacea, you do generally try to get under the prescribed (two pills per day) dose if you can because long-term antibiotics aren't that good for you and so you try to use as little as you can get away with. But there are plenty of ocular rosace patients who are on the 2 pill a day dose (standard dose) for months or even all the time because that is the only way their symptoms stay under control.

The main problem with Doxycycline besides the usual problems with antibiotics (yeast etc. stomach upset) is 1) you get sunburned more easily and 2) worst of all it can cause birth defects (stained teeth) so you have to make sure not to get pregnant while on them.

Anyway if it turns out it does cure IC it's probably worth the yest infections etc. for a course of the antibiotics.

I'm doing much better, bladder symptoms gone for the time being but it is my period and they always go away for the few days of my period (but I flare horribly until my period gets started, for a few days before my period, isn't that odd?)

Blessings, Lori

[LM]

This is sort of scary to me. :( I have always been concerned about the bacterial possibility and was asking a lot about it last year since I'm single and can't imagine how this could effect my dating/sex life but nobody else seemed concerned about it. Anyway, I was feeling better for a while and had sex with a new partner (who was willing to take antibiotics because I had been worried about this), but now I am in a terrible flareup and I'm wondering if this is a factor.

Apparently whether or not the partners took antibiotics effected the recurrence rate of the women in the study, so I don't see how it can just be attributed to an anti-inflammatory effect or something other than killing bacteria.

This disease sucks. I hate the thought that this could be contagious. :(

[ICLori]

Well, I gotta say, I'm on the Doxycycline now twice a day and I'm still in a flare...isn't doing much for me...you know I get better for a few hours and think, oh maybe the flare is over, and then it hits again.

It hits especially every late night/morning after I haven't been drinking water for a few hours - I really have to keep the urine diluted...

So I guess Doxycycline isn't the answer for me, although I hope it is for others because wouldn't it be wonderful if only this could be cured by a course of antibiotics?

Blessings, Lori

[creatingkarma]

FYI: I was prescribed a daily dose of Bactrim when I was 1st dx'd with IC years ago. I took it for a year & 1/2 faithfully. Not only did it not help my IC, but I even acquired a few true-blue infections while on it.

[Indy]

I actually wrote an e-mail to the researcher and they used broth cultures. What's confusing is that according to BJ Karpaza (??) the culprit is enterococcus but this study in Switzerland found ureoplasma, chlymydia and mycroplasma. They said doxycycline would not cure enterococcus.

I obtained a broth culture test kit by mail-I'm not sure if I am going to bother doing it because I have already decided to take the treatment and so has my husband.

I always feel better on antibiotics and really think there is a stealth infection in my bladder wall.

[jen_dahling]

The other day I saw some posts about using alternative therapies and long-term antibiotics. This concerned me because last semester I finished a course in microbiology and pathology for nursing that, in effect, said that the high Rxing of antibiotics should be a no no due to resistance, patient complications, etc. There was also mention of H2O2 therapies in that post thread. The info. that we were taught along with lab experiments completely went against what the link from that post said. So, I decided to e-mail my professor to see what her PhD opinion was about the posts, links, and info. being discussed. I was very concerned that the info. could be misleading. I got a reply from her the next day. To my surprise, she has IC. Her symptoms were terriby bad and after a year she considered resigning from her job. She didn't want to have anymore cytoscopies or instillations because they were too invasive and painful. She then did the 6 month low-dose antibiotic therapy and has been symptom free for over a year. She said that although what we learn in theory about antibiotic drug use says no, sometimes you have but a few alternatives and that when in that kind of pain to go with what you need.
She had no idea about the H2O2 therapies, never heard of it and said that it didn't make much sense to her. So be careful about that if you are considering it, especially from a website.
That's all. I just wanted to put this out there for anyone considering antibiotic therapy. My professor is very knowledgable and someone I trust. I hope that the info. from her will help. It gave me a lot to consider.

[PlainJane]

Martha,

Thanks for sharing this information. I agree that 48% is a significant improvement. I'm sure it was significant for the 48% who felt better! How do they decide what is a 'significant' improvement anyway? How and who decides that?

Erica

[Tracey5399]

Hi,

Maybe i am wrong to post this, however i tried the doxycycline also hoping it was honeymoon cystitus ( also used to treat that as well ) and after 3 days i was sicker than sick. Guess i had a bad reaction to it and since have been too afraid to try it again. I am thrilled for those of you who it helps. I am confused now & wonder if i should try it again just don't want to get sick. Anyone else have a bad reaction to that antibiotic?

Tracey :)

[PlainJane]

Hi,

Maybe i am wrong to post this, however i tried the doxycycline also hoping it was honeymoon cystitus ( also used to treat that as well ) and after 3 days i was sicker than sick. Guess i had a bad reaction to it and since have been too afraid to try it again. I am thrilled for those of you who it helps. I am confused now & wonder if i should try it again just don't want to get sick. Anyone else have a bad reaction to that antibiotic?

Tracey :)

Hi Tracey,
What bacteria showed up in your test when the doc prescribed the Doxycycline?

As well, regarding the bad reaction to Doxy. It is possible that what you were experiencing was a Herxheimer reaction (which basically means that you were feeling sick because the antibiotics were doing their job and were killing off bacteria.) When bacteria are killed off your body is flooded with toxins and it can make you feel quite ill.

I was feeling really sick with the Doxy but these days I am feeling a bit less sick. I have to get re-tested to see if my bacteria are gone. Now I have to start working on building up my immune system.

Please share more about your experience with the Doxy if you are willing. Thanks,

Erica

[Katrina]

This thread is from '04....
Yes others have had a bad reaction to Doxy....there is a thread with a poll somewhere about which anti's have not always been IC friendly.

[MarthaF]

There have been many attempts to determine whether IC is conncected to bacteria, and if so, which ones. There are some species that are considered specifically UT bacteria such as E. coli, Enterococcus, Staph coagulase negative, Klebsiella, Pseudomonas, etc. The focus had always been on E.coli since that is easily found by the common culturing technique. Since broth culturing has begun to be used by some there are more species isolated.

I do not know much about ureaplasma, mycoplasma, and chlalmydia. These are harder to culture and yet are problably more common than is commonly believed. Someone such as Dr. Toth who does extremely good culturing in his office is more apt to find these.

In my experience the most common species the broth culture isolates are Enterococcus and Staph coagulase negative (a skin contaminant which appears to also cause some bladder discomfort). As more extensive culturing techniques come into use (PCR for one) I think more species will be isolated. Some types that are considered sexually transmitted, such as chlamydia, are hard to culture and will take the best techniques available. But these STIs can cause UT symptoms and probably many are being diagnosed with IC when in fact they have urogenital infections and need more extensive treatment. The study in Switzerland that was published 2 years ago said they did not isolate specific bacteria but decided to use Doxycycline for some reason. But one of their conclusions, based on the positive results, was that better testing should be developed since so many responded to an antibiotic.

In the best of all possible worlds the specific pathogens would be found soon and treated with the right antibiotic. This is why many of us have said that the lab work is the key and we should be working to find out why the labs do not use the best and most extensive culturing available. UCLA is working on a high tech method which would give results in minutes but it is not ready for clinical use yet: http://jcm.asm.org/cgi/content/abstract/44/2/561

Perhaps if some of us figured out where we should write/advocate we could send letters. Chronic urinary symptoms should be given the utmost attention in the culturing world instead of using a 50 year old 48 hour agar plate test that is wholly inadequate today. ONE lab in the world that we know of will do broth cultures. This is a very old technique that is not even taught to most mircrobiologists today. It takes time and costs more so the labs are not anxious to do it. We know there is much bacteria in the bladder after doing a small study using broth cultures on both IC patients and controls. As a result we know bacteria can exist without causing a problem, but if there are bacteria AND symptoms infection should certainly be suspected. They now know that stomach ulcers are caused by H. pylori, but many in the population have H. pylori without developing an ucler. Something triggers an infection and this is true in the bladder also. Many can identify a triggering event, but it may also be due to genetic reasons.

While I have been a proponent of the possibility of bacteria as a cause of chronic symptoms diagnosed as IC for many years, I am now becoming more aware of other urogenital pathogens that cause similar symptoms and have been overlooked. Probably because they are so hard to culture. Dr. Toth is able to find many and he says that he does not use any kinds of exotic tests that other scientists could not perform. Why then are so many being missed?

Martha

[Katrina]

They now know that stomach ulcers are caused by H. pylori, but many in the population have H. pylori without developing an ucler. Something triggers an infection and this is true in the bladder also. Many can identify a triggering event, but it may also be due to genetic reasons.

That is the thing...we don't know...there are theories and in each specific case just as in a specific case of IC the cause may be different. I suspect some ulcers may be caused by bacteria but not all...doctors were very certain of the cause of my ulcers....I suspect in many cases there is more than one factor. Bacteria is certianly a factor that shouldn't be ignored. The other factors shouldn't be ignored either. In the area of IC we need to look into all of them....and to not leave out anything.

[Tracey5399]

Wow this is so interesting, what a great post. I am not as knowledgeble as most of you yet. I was told that IC is not a bacteria nor infectious disease but like i said i am only just beginning to learn all this and am very grateful for this board. You ladies should be doctors, i would much rather have 1 of you treating me LOL.

Hey Erica,
I had no infection at the time i took the doxy, i had asked my Uro for it ( as i sat in front of her w/an article on honeymoon cycstitus ) so she let me try it and after 3 days i was horribly ill. She never tested for the HC though, i guess just her routine tests she does, however i trust her because when this whole ordeal started i went to my gyn 3xs and she said i have no infection. When my Uro did it she found the staph infec and yet 2 months later after it was totaly cleared up BAM IC. I had always thought that maybe the staph infec caused the IC but i got the staph infec from a DNC i had so now i am totaly confused LOL. Boy i have alot to learn. Do you take the doxy all the time? Will you stop it when the infec is cleared?

Thanks,
Tracey :)

[Michelle B]

We know there is much bacteria in the bladder after doing a small study using broth cultures on both IC patients and controls.
Martha

Just wondering, who is 'we' (the names of all individuals and organizations associated with this study)? Have the details and results of this study been published? If so, when and where were they published? Who funded the study?

[Romans8:28]

Yes, antibiotics should be considered between a patient and their doctor. As I have said before my doctors treats all his bladder symptom patients this way and most get well, BUT those who don't he gives an IC diagnosis and IC symptom treatments. As Katrina said it is important to consider all aspects of treatment.

As we have been culturing and experimenting, I had kinda of a brain storm. How does one test for antibiotic resistance with the PCR, etc. The PCR detects the specific DNA of a bacteria so you couldn't do an antibiotic testing on it??? As we are testing bacterial resistance to various things, I am wondering if that is why the old agar/culture plate continues to be the test of choice in most cases?

I do think the broth may have brought out my biofilm infection but have more test and trials to see! Plus lots of questions for the microbiologist!

Just keep in mind as we talk and consider infection, most of the bacteria we are talking about are opportunistic and don't cause infection in everyone. Many may be misdiagnoised chronic infection patients, others, IC may be the cause of their bacteria, allowing it to grow in an already damaged bladder lining! Those in the IC group may have some relief with antibiotics but are probably the ones who don't get well on them.

[PlainJane]

Do you take the doxy all the time? Will you stop it when the infec is cleared?


Hi Tracey,

I've been on the Doxy for almost three weeks. I'll be finished this prescription in 4 days. Then I have to wait a while, get re-tested and see if the bacteria's gone. If it's not I'll have to do more treatment.

Erica

[MarthaF]

Yes, antibiotic sensitivity testing is more difficult using PCR/DNA testing but I wrote one of the UCLA researchers and they are working on this. Probably one thing holding it up, but they seem to feel they will figure it out.

The research I sponsored was carried out by the Medical College of VA by Dr. Helen Fillmore. She uses the PCR and another lab did the broth. We ran out of money even though she was donating her time. Recruiting and testing patients took much time and money. Another microbiologist hopes to carry this on and will try to get a grant fromt the NIH. One approach is to determine whether bacteria such a Enterococci invade the wall of the bladder. Japanese researchers have found Enterococci can form biofilms just as Dr. Hultgren at Washington Univ found E. coli do several years ago. He was the featured speaker at an ICA conference in 2003. Biofilms can account for recurrent infections since the bacteria hide and can re-emerge. The grant Dr. Fillmore submitted was turned down. There are many avenues to investigate in terms of bacteria but it is difficult to get NIH grants these days. Who else will sponsor this research since the mainstream does not see that bacteria are connected with IC/chronic bladder pelvic pain symptoms?

We know that there are triggers for an actual infection because many seem to be able to tolerate bacteria. There are many theories and the bacteria may be oportunistic due to triggers/trauma. There are two interviews on this site by B J Czarapata, NP. Her belief was that the bacteria are opportunistic. Ruth ****, NP, is now treating patients using findings of a broth culture she orders. She uses antibiotics and supplements to heal the bladder wall. (202-714-2415) She is having good success.

There is a lot information on UTI bacteria on the internet but it is not in connection with IC. This is an area that should be investigated further since no one knows the cause of IC at this point. Something may weaken the bladder wall and it becomes susceptible to bacteria that are already there. Why do some have ulcers - I don't think anyone knows but the Nobel prize was given to scientists who found the presence H. Pylori is a factor.

Martha

[Romans8:28]

Yes, h.pylori was a good discovery on how bacteria can cause disease that they never connected before. But as time and treatment goes on they again are finding, not all patients who have h. pylori get ulcers and also that not all patients who have h.pylori ulcers heal or get completely well on antibioitic treatment. That is why ALL aspect of treatment need to be considered.
So far, though I have never talked to her, Ruth's works seems more inclusive to me to those that want antibiotic treatment. She not only gives antibiotic but things to help heal the bladder along with diet etc. Though 15% also do not get completely well, I believe her percentage is higher then someone like Dr. Toth, because her treatment is more inclusive.
I am on both antibiotics for chronic infection, healing treatments and simply pain control measures but as I've mentioned before, the antibiotics make my IC worse. I just believe as people consider the antibiotic treatment (which I believe each IC patient should at least consider with thier doctor), they need to know that this does not work for all, and many still need other IC treatment options.