Bacteria-Could this be why it is not found?

[mooeeann]

I had a broth culture done and it showed Enterococcus, although my urine culture from my Uro came back negative. So, I have been reading up on bacteria and came across all this info on "biofilms". It seems that biofilms are on the up and coming new research from what I have read.

A bit of background on biofilms is that they form around bacteria/virus and protect it: One, from being detected per a culture, and two, antibiotics can not get thru the biofilm to kill the bacteria/virus. So basically, they don't show up on most cultures and are also hard to kill because they are protected.

This is what I read about Enterococcus:
"Enterococcus is a gram-positive opportunistic pathogen known to form biofilms in vitro. In addition, this organism is often isolated from biofilms on the surfaces of various indwelling medical devices."

So, could it be that this biofilm could be the reason why it is so hard to culture and kill the Enterococcus.

[sandymarie]

I have wondered for a long time why they cannot find any bacteria. It seems to only make since there is something in there. For me anyway. I have been done everthing they offer in my little place where I live. I can take bactrim and although it does not stop the pain, it does help with the burning. One symptom going away is a big step for me. Please keep us posted. I have heard that the US does not have the tech. to check for some bacteria, but that just does's sound right as many uros as there are.

JJ:smile tee

[MarthaF]

Yes! Bacteria do form biofilms in many parts of the body and the bladder is one of them. I found an article last year showing that Enterococcus was a culprit:
http://escholarship.lib.okayama-u.ac.jp/cgi/viewcontent.cgi?article=1297&context=amo
This article is excellent. They found enterococcal biofilms and in many cases there were other species of bacteia within the biofilm. These bacteria are not culturable until they are released from the biofilm and free-flotaing. But treating these bacteria does not get rid of the ones still in the biofilm. Biofilms are hard (or impossible to penetrate) so research is ongoing as to ways to break up the films and then treat the bacteria relesased.

A few years ago there was groundbreaking reseach by Washington Univ on the fact that E. coli formed "pods" in the bladder which could account for recurring infections. They now refer to these as "intracellular bacterial communities" which sound like biofilms to me.

Thanks for the information you found on Enterococcus. Can you provide the source - I would like to read it. There is lots of information on the internet on biofilms - it appears almost any kind of bacteria is capable of forming them. This is a very big topic for research right now. It explains why infections can be so tenacious and hard to culture.

Martha

[futurehope]

While we are on the subject of biofilm formation in the bladder due to bacteria, isn't our disease named "interstitial cystitis"?

To me interstitial has meant between/inside the cells, and has brought to my mind the idea of a cystitis originating inside the cells. Since this was the name given to our ailment/illness, why is this then so unusual or new for doctors to be looking INTO the bladder cells (biofilms)? Like, they haven't looked in between cells before, yet this ailment is called INTERSTITIAL cystitis?

Am I missing something here? Why was the word interstitial used and then no one looked "interstitially" before? Am I making sense?

On another subject, the bacteria which formed biofilms in the article mentioned, were due to devices (such as catheters) used in hospital settings. Infections acquired this way are called nosocomial infections.
Many people with IC may not even have even been hospitalized, and therefore, their infections could not have been acquired that way.

I guess I'm still not understanding what you all are saying about the biofilms, because the stuff I'm reading says the germs were on devices and that's how they formed films?! Okay, my brain's fried now.

[Romans8:28]

The sad thing is that biofilms can attach to any surface. Biofilms for in the lungs of cystic fibrosis patients and form a thick mucus... this is a pseudomona biofilm.
Biofilms are basically little community like fortresses that bacteria build. The love to attach to foreign objects etc. but can attach to the body as well. I recently found a research article linking biofilms to difficult to treat ear infections and children.

many types of bacteria form biofilms... Hultrgren is the first to suggest he has found them in the bladder lining!

For me both of my kidneys are full of kidney stones... they do even try to count them, I had a surgery and half way through they realized the scope was not sterile...
my doctor no and new one and I now believe I have a biofilm infection in the many stones in my kidneys!
I currently live on 2 full strength antibiotics to control my kidney infections.

my IC currrently seems to be in remission but that is something that continues to also need IC treatments to maintain. Did the bacteria biofilm cause my IC??? I don't know..., I can look back and had issues as a child or did my IC bladder help the biofilm to attach and take hold in my body! I don't know??

However, IC patients can often have bacterial issues, that do not show up on standard cultures. Cultures are only design to look for large colony count bacteria not low level irritating infections. It is very important the IC patients be allowed to rule out a bacteria issue before being diagnosised with IC.

My uro puts all his bladder symptoms patients on long term antibiotics..., many who were previosly diagnoised with IC get well... however those who don't he then gives an IC diagnosis and begins IC treatments as well. I am one of the few who have both IC and a chronic infection.

Another URO recently added to our local IC support network keeps all his IC patients on Macorbid because he says they have increased infections which cause them to have flares.

The recent OPtimist also mentioned that at the UAU researchers are taking another look at the role that biofilms may play in IC and IC patients.

The truth is even researchers are still learning about biofilms....so we can not completely understand them'

bioiflmsonline.com is a good place to learn about the role of biofilms in the medical arena!

Shelly

[dbritts]

Biofilms are the subject of alot of interesting research right now. I suffer from chronic sinusitis and am reading a new book by Dr. Jordan S. Josephson who is the director of the NY Nasal and Sinus Ctr. and an attending physician at Manhattan Eye, Ear, and Throat Hospital. He states that "biofilms have been implicated in many infectious processes, including periodontitis, muscolskeletal infections, cystic fibrosis, pneumonia, and chronic sinus disease" to mention a few conditions. My urologist says that bladder biofilms have only been researched in labs so far. Shelley is absolutely correct that biofilm research is in it's infancy.

I believe that IC is one factor in the chronic UTI that I have suffered with over the last four years. I'm presently on antibiotics for Enterococcus and MRSE. This will be an ongoing infection until more research is done in this area. I've been diagnosed with intracellular UTIs caused by enterococcus faecalis and MRSE.

My urologist pushed for our hospital to use their cultures for nosomial pathogens to identify bacteria in the urine that comes back negative on an agar plate. Different bacteria grow on different mediums, but we do live in a country where one single culture can pick up gram-positive and gram-negative bacteria. Only 85% of UTIs are caused by e. coli and the others are caused by staph, enterococcus, klebsiella, and pseudomanas. I've probably missed some, but these are the ones that come to mind. I feel the same frustration over this problem that I felt for the 6 yrs. I was trying to get an IC diagnosis. Everyone acknowledges that an IC patient can get an UTI, but there are people who don't understand as more of the so-called "nosocomial pathogens" make it into the community then one culture needs to cover all bacteria. And those cultures are available. Next, you deal with the issue that most average urologists don't have a treatment protocol to handle this type of infections, because they're used to an e. coli infection and a 10-day round of antibiotics. It reminds me of the dark days of IC when we were told to see a psychiatrist for our bladder symptoms.

It's a complex problem for those of us who are dealing with two separate problems. My urologist feels that drs. want to avoid this issue because it will "taint" an IC diagnosis. I had IC diagnosed on a bladder biopsy in the early 90s and I'll still be on my IC meds if they ever manage to get rid of this infection. The longer this is ignored by the majority of the urology community, the harder it's going to be on us who have this problem.

We're not the only ones affected by "noscomial pathogens". My brother--in-law has colonized MRSA and pseudomanas in his sinuses. He's been struggling with that for over 2 yrs. His wife had bronchitis caused by MRSA. My sister developed a boil which came back as MRSA. My point is these bacteria are out in our communities, but no one has a problem when it's diagnosed in your sinuses, lungs or on your skin. Why does it feel like so much skepticism surround the UTIs that they cause?

Debbie

Enterococcus bacteria is visible under a microscope--but it will come back negative on the culture used to grow e. coli. Then you'll be told you don't have an infection--if this keeps happening, you'll probably eventually be diagnosed with IC. How sad if you actually have a UTI? It can happen with today's methods.

[futurehope]

Well, you've given me a lot to think about. One thing that comes to mind is the IC diet and how many people who follow it find a decrease in their symptoms.

I was following the IC "usually okay" column in my choice of foods, until I realized I was not getting proper nutrition when following it because of all the foods I was avoiding.

So, wouldn't it be sad if some IC'ers were suffering from an undiagnosed infection? Then assuming IC was their diagnosis (the doctor said so), they follow the IC diet, and make themselves sicker because of the lack of nutrition and lack of ability to take vitamin supplements. Oh brother?!

It reminds me of the past when leeches were used to bleed sick people in order to make them well. Us ICers, modify our diets to the point of malnutrition in the hopes of getting well. How barbaric?!

Something has got to change. This state of affairs is unsupportable and illogical. Anyone agree?

[mich2604]

Great posts as always!

I agree about the IC diet, ive eaten zucchini so much that i am now allergic to it. its one of my safe veggies. I dont really notice any odd symptoms, but this was a delayed allergy test, so they would happen probably a day or so later and since i eat atleast 8 zucchini a day, i just have to wonder what it is doing to me.

I wish my uro would have let me continue on abx. I looked at my records and my first few months of appointments i was showing nitrites on the dipstick, so was put on cipro for three days only, still had symptoms, this happend twice. Once urine was sent out and it came back mixed flora contaminant. I often wonder If I was allowed to continue on cipro, just maybe I would have improved. I just dunno.

I do remember at my hydro that the uro said that i could have a low level infection and she would take that into account with my treatment. It never was put in my chart. If i am brave enough im going to ask my NP at my next appt, but i really fear being yelled at for not going along with the game plan. I do believe you can have chronic UTI and IC.

I tested positive on the special quest culture for staph and enterococcus. they werent small amounts either. Cipro was one of the antibiotics I could use for both.



Im trying right now to add a buffered vitamin C to try and build up my immune system.

[helen newcastle]

hi I just wanted to start of by saying i always have an infection, i moved to spain where you can buy antibiotics over the counter. i put myself on lAugumenton. it has helped me so much i take one aday . for the last two years. if i miss aday or two i have chronic pain. before being on the antibiotics,i was on oxycontin bladder instalations , everything I took, nothing helped. my cultures came up positive. then sneekily began to find a way to not show up. whenever I sent my cultures to dr fugozotto they came up positive. i live in Australia now where they have no problem to culture things. i have just had a culture done at my local gp office for ureoplasma. it came back positive.I believe that i have never got rid of my first infection 10 yrs ago. i find it hard to believe that the four years i lived in Houston I had to send my urine to this retired doctor. I also want to say I can never find any replies on this web site. think its me I just seem to loose them . can anyone explain to me in simple terms what ureoplasma means. my email is haprestegard@yahoo.com. Id also like the web on biofilms to show my dr here.

[MarthaF]

Lots of good posts here!

Futurehope: If you read more in the Japanese article I cited you will see that the biofilms they found were not all catheter-related:
"There was no statistically significant difference between biofilm-forming capacities and clinical background (catheter-related and catheter-unrelated cases, polymicrobial and monmicrobial...." I think they have been able to see biofilms better on devices such as catheters, but now they are able to see them in the body.

Your point about the name "interstitial" is relevant. Some bacteria invade live tissue and that would make it harder to find. In the beginning '"IC" was called Hunner's ulcers (100 years ago). Still a certain percentage of patients have ulcers and now we know that stomach ulcers are caused by bacteria - H.pylori. But up until Dr. Barry Marshall's discovery they thought ulcers were caused by diet and stress.

For some reason UTIs caused by other species than E. coli are easier to find in the hospitalized patients (nosocomial). Maybe they are more virulent and therefore culture more easily. Shelly has done culturing herself and may be able to explain this.

There are so many of us who have not been hospitalized but whose cultures show bacteria such as Enterococcus, Staph, Klebsiella, Pseudomonas via the better culturing methods such as broth, resin (in Debbie's case) and now Quest (as Mich pointed out) that it is hard to dispute. Ruth ****, NP, who is specializing in treating chronic bladder infections has cultured way over 300 patients and has good records. She says 80% of her patients grow Enterococcus, Staph is the second most common, and then there are a few others such as Klebsiella and Pseudomonas. The high tech test that they are working on at UCLA (for over 3 years) points out that they are looking for many other species than E. coli:
http://jcm.asm.org/cgi/content/abstract/44/2/561

The routine agar plate test has been the "gold standard" for over 50 years and yet now we have so many better methods like the DNA and PCR testing. Dr. Fugazzotto knew of broth culturing that dates way back but had been phased out of use. While there are better tests now based on DNA, in the right hands broth is reliable and all that was available for most of us. If more doctors were aware of the Quest test and began to see what it can reveal perhaps they would request that rather than the routine. I think they have just been trained to depend on the agar plate and the labs are glad to oblige.

We still haven't proven whether we are dealing with biofilms or intracellular, and I have been told by a microbiologist that it would require a biopsy. Still nothing will change until the mainstream decides to look deeper. One hope is that the EPIC study (Events Preceding IC) at the U of MD has shown that over 50% of participating patients say their symptoms started with a UTI. This means they can hardly overlook bacteria any longer. And the article in The Optimist as mentioned above, and coming from the American Urological Association meeting, declared that biofilms were becoming an important factor and could be bladder-related. Biofilms are on the front burner in research now. In the case of biofilms the challenge is to figure out how to break them up and release the encapsulated bacteria so it can be treated. I have no doubt this will be accomplished. EDTA, a chelating agent, is being tested as a possibility.
http://www.ce.cmu.edu/~jeanne/posters%20for%20web/VanBriesen%20BMES%20Abstract%20EDTA.pdf

This research was done at Carnegie Mellon and an explanation with more detail about biofilms is here:
http://www.ce.cmu.edu/~jeanne/posters%20for%20web/Kim%20and%20VanBriesen.pdf

Note that they are using a CDC device to grow biofilms. I have a feeling we will be hearing a lot more about biofilms, although they have been known about since the 1970's.

Martha

[Romans8:28]

Martha,
Please tell me more about the specific Quest test...have wanted to check into this more but some set backs in my health (we are having an CAT this week and set up to see a GYN for surgery next), plus getting this support group going have hindered my research issues....,which specific Quest test and how is it different.

It is important for all of us to realize it is our bodies and we have the right, (check out the AMA website on what a patient physician relationship is supposed to be) to question and request. If you go to www.biofilmsonline.com and go into news and research there are many articles there. There are many good biofilm articles on this website too if you search it. i made each of my physicians a biofilm notebook, and was lucky enough to have a biofilm reseracher talk to my doctor! It is your body but as others have said please don't be crushed if all your symptoms don't disappear after antibiotic treatment, The longer this goes on the more issues including nerve pain, damaged bladder lining etc that happen and you still may need many IC treatments too!

Debbie, if you all are dealing with MRSA I am going to pm you the name of a microbiologist from the American microbiology message board who is the one you all need to talk to. He leads the fight for MRSA patients!

As far as diet you bring up some important issues.
First of all wether infection is at the root or just stirring things up, the IC diet is designed to be soothing and healing to the bladder. This is important either way.

However I think we all need to use wisdom when it comes to healthly foods like fruits etc. Many of the diet materials offered on this site, really go into more detail on how to do this and I would recommend all three books. Add fruits slowly and in small amounts. In one book I read we can tolerate more things when they are in something that has like baking soda and milk like in breads etc. Or taking prelief a long with it...(I can't I put calcium right into my urine and increase my stones....bummer!) But most people can. Prelief is a good tool. There are also many good articles on diet and some good healthy recipes in the patient handbook too. I am excited to see more natural and healtly alternatives arriving at Wal-mart daily. The choice of Kashi cereals that I can eat are good, and I have even found some natural quick flavored oatmeals, along with even preservative free lunch meats and bacon... not the healthiest but now I nca have black eyed peas and corn bread again... nothing worse then cooking those things without bacon! (lived in the south most of my life:)!

Just some thoughts!
Shelly

[futurehope]

So am I to believe those pesky microscopic critters inhabiting the biofilms can wreak havoc with our bladders, but at the same time, resist detection or treatment?

That's a tall order. They encapsulate themselves to the point of being undetectable and untreatable (because they are supposedly unreachable), yet they affect the bladder lining? If they are so encapsulated and unreachable, how can they so negatively affect their surroundings?

My thought, when thinking of encapsulation, is that something is self-contained and pretty much in a dormant-like, benign mode, not interacting with the environment.

Those pesky critters must be very selective. They can resist detection and treatment, are so small that they require a microscope and special procedures to identify them, and yet they injure their host. I'm impressed! Bring out the guns!

I'm being facetious. This is all so incomprehensible to me at this point.

Romans - The Quest test is urine, culture , special 3021A.

[MarthaF]

I know this sounds complicated but if were easy chronic UTIs would have been solved years ago. As you know a major reason for patient office visits is UTIs. The mainstream has always realized the UTIs recur and Hultgren's research at WAshington Univ thought their findind of "pods" (in mouse bladders, mind you) explained this. The E.coli were the species studied and they found they escaped the pod and formed another infection (when outside and free floating in the bladder). They could treat (eradicate these) but what about those in the pod that were unreachable? They could escape later and bingo! there is another infection. We are still talking mouse bladders in their research as far as we know.

What many of us know is that other bacteria can be involved and are just not found by the typical routine culture. We've talked about these kinds above. There are Gram neg (like E.coli) and Gram positive (like Enterococcus) and the behave differently. They do not all show up on the routine culture in 24-48 hours. So they may be there all the time and the antibiotics such as Bactrim would not touch them as it does E.coli. So patients keep going back and saying to the uro that they feel like they have a UTI and now the lab results are negative. It is possible that something like Enterococcus was there all the time and the 10 days for Bactrim did not treat it. And Dr. Fugazzotto found in his lab testing that Macrobid, a popular treatment, is not strong enough to treat Enterococcus if it is there. Macrodantin is a treatment for a Gram pos like Enterococcus but must be given in 300mg - 400mg doses according to Dr. F.

The Enterococcus may been been there for months or years undetected and is firmly entrenched. It could be in the bladder wall and so take months to treat. But many have been able to beat it and have posted here. As Debbie says, though, the sooner it is discovered the better. The inflammation and ulcers seen on the bladder walls have to be caused by something and bacteria are notorious for this. No resarch has ruled out infection - it is just that they aren't able to find the bacteria. I know of at least 6 or 7 researchers or labs that can find it. United Medical is one, and Shelly has taught herself how to culture using broth and has found bacteria that a routine culture wouldn't find. (Correct me if I'm wrong Shelly) At some point these bacteria may form the biofilm, or pod, or intracellular communities, and then they are hard to detect unless they escape and are in the urine specimen. That is why they are working on a way to break up a biofilm in order to both detect and treat.

I know it is more than most of us ever wanted to know about bacteria but we are motivated to find answers and this makes the most sense to us. It seems simple to find the bacteria - I think that it is found more than they admit, though. A microbiologist at a large uro practice told me they find Enterococcus quite often and just dismiss it as a "contaminant". They have been taught that bacteria in low colony counts don't matter. But for some species it does matter especially if you have symptoms!!!!

Shelly, the Quest culture is called "Urine culture, special, #3021" on the Quest menu. They send these to regional labs and I think each lab has its own media or method. I looked up the regional one for your state and this is what I found: http://cas2.questdiagnostics.com/scripts/webdos.wls?MGWLPN=QDCIAP22&wlapp=DOS&OrderCode=3021&SITE=18&SearchString=CULTURE%20URINE%20SPECIAL&tmradio=title

Note they say that any count is significant. (I think they probably let it grow longer on agar and then report all growth.) Some of the regional labs use different media - one I found is called Chromogenic and it shows different species in different colors. A few have used Quest and bacteria were found. I called and asked to talk to a lab tech at my regional lab and they said they would only speak to a doctor so I can't get any more information.

Pretty frustrating when there is a test out there and available by a huge mainstream lab corporation and no one knows about it. LabCorp has a better culture, too, but who was ever tested by it? It would be to the benefit of the lab industry to market these tests to the doctors and I bet many would be relieved if many of their "negative" patients were found to have bacteria after all. UTIs are treatable and even curable.

Martha

[Romans8:28]

In order to understand cuturing, bacteria etc. we began studying microbiology as a home school project comparing broth to stnadard culture procedures. To my total shock since I had been on Cipro for 7 mos and was at the time of the culture... I grew out a very resistant pesudomonas that matched the same resistance as the original hosptial infection except one thing... it was resistant to Cipro amazing.
We changed antibiotic since to everyones amazement it show suseptiblity only to bactrim.. which I am still on.

later since some symptoms continued, i was taken of antibiotics for only 2 weeks and retested this time I cultured myself and the doctor ordered the Lab at the hosptial to do the exact same culture techniques there... these were both mid stream catherized urine samples taken in sterile conditions, 2 days apart and grown in too different places. The results matched...., standard cultures showed nothing, the broth showed another noscomial gram neg. bacteria... (amazing there were was a second gram neg bacteria listed on the originally culture too)

This made a believer out of me and my doctor... and yup I am on big guns... however my case is unique in that the bacteia are in a fortress behind or in my stones... many other MSk Patients who have the same stone issue that I do have the same kind of chronic pain issues that no one can explain... and they have infections that don't show up on cultures... I have had some pretty high level reserachers tell me this will eventually take my life! One MSk patient with a similiar situation had been toxic in the hosptial and them not able to culture the bacteria....,This same lady had a knee replacement, Within a short period of time biofilms attached all over it. they had to take it out, can not replace it and she can no longer walk on it!

Truthfully I have been speading more time working with MSK patients for this reason. At least IC er's have a lot more people believing the pain and willing to help yet look at how hard it is to get someone to look for infection.

Also it is very important to understand that ICer's can get the infection under control. They do not have the stone issue.. (most of them found several MSKer's with IC that makes me think!) Early treatment is important. And we really need better cultures techniques. But I am very hopeful about Dr. Hultrgrens work. Again whether bacteria cause the IC or irritate it, they are still something that needs to be considered.


[COLOR="Magenta"]ONE THING IT IS IMPORTANT TO NOTE, MY IC WAS BAD... I DO SOO MANY TREATMENTS, BUT UNTILL WE GOT THE INFECTION UNDER CONTROL THERE SEEMED TO BE NO HOPE OF GETTING MY IC UNDERCONTROL. NOW ON THE RIGHT ANTIBIOTIC COMBO FOR ME, I FINALLY HAVE DAYS WITHOUT KIDNEY OR BLADDER PAIN.... AM I CURED NO BUT BETTER THEN MOST I HAVE SPOKEN WITH AS BAD AS I WAS!!!

RIGHT NOW WE ARE LOOKING AT SOME OTHER ISSUE, MAINLY BECAUSE THE BLADDER DOESN'T HURT, THE KIDNEY DOESN'T HURT AND I AM HAVING SEVERE RIGHT SIDE PAIN etc/ That are new and don't act like IC

I would encourage anyone to do the research them selves. It is not pretty easy or what I wanted to do but no one is going to do it for me!


Thanks for the info, Martha I am going to check it out right now!

Shelly

[mooeeann]

I love you guys!!! It is so nice to see other researchers like myself. I mean everyone thinks I am nuts with all this research on the human body. They are always telling me to find another "hobby". Well, if they had a disease like IC for over 15yrs (Got it at 19 and am now 34) they too would think twice. I am a proactive person and am not just going to sit around without trying to figure out the "why" to all this. So, it is so nice to see others like me.

I started to look into biofilms because my IC started w/ a really really bad UTI. Never had any bladder problems at all prior. The infection was so bad it took a month to get rid of, well at least that is when the culture came back negative, but I was left w/ all my same UTI symptoms finally a DX of IC.

Interesting part, when I first started researching in depth, I got all my medical records from when my UTI first started and the labs showed that I had crystals in my urine. Well, from reading, crystals can be the start of stone formations. Although, crystals in the urine does not necessarily mean stones, just that they are more likely to form. My Dad has a history of kidney stones, and I read that kidney stones can run in families. It has to do w/ how the body metabolizes calcium and oxalates.

With the biofilms, I have read that crystals or stones are a great place for bacteria to hid out w/ out being detected or destroyed. In fact, one would think, or should think, that the urine/kidneys, since it has all the waste products of minerals etc, is a really a very great place for bacteria to hide out. So, I think researches should start getting on the bandwagon with this.

My thought, like many of you, was what if my infection, since I had it for so long, attached to these crystals, or small stones and went undiagnosed. This lead me to biofilms and a "ah ha" moment. I kept thinking the longer the bacteria stays in the bladder/kidneys the more chance it has to hide out or at least attach to something and stay hidden.

This could be why antibiotics may not help. Unless we take something that destroys the biofilms, antibiotics would not get to the root of the bacteria. Sure it may help, in fact I have read that some antibiotics can chelate as well. I have started to read about people, with other infections w/ biofilms, are taking antibiotics along w/ chelating agents, like EDTA. This has helped them get rid of the biofilm and then kill the bacteria.

THe funny thing is, I would think once the biofilm gets destroyed, one would probably get a UTI since the bacteria is no longer protected. But this would be the only thing to do to actually kill it. So the weird part would be that if you take chelating agents and get a UTI, that would mean the chelating agent is doing its job. Weird!

For me it is just strange that after 4 UTI's in a period of 4 months, back to back, right before I got IC, I have only had ONE infection since then, that is in 15yrs! My GP did the culture, this was about 8yrs ago, and it was from Quest, and guess what the culture came back as.......Enterococcus, 30,000ml. I did also send my urine to Dr Fuggazotto, about 15 yrs ago, and he found Enterococcus as well, this was even before the Quest one my GP did.

So, at least for me, I do believe that bacteria has at least something to do w/ my IC. I mean it did all start w/ a UTI.

I am happy that at least now, researchers are looking at biofilms and finally now realizing that biofilms could be linked to many diseases, especially UTIs. At least this is a good start.

Just also wondering..... what is MSker???

Marianne

[Romans8:28]

MSK is Meduallar Sponge Kidney Disease, basically because of a defect in the tubes of the kidney they don't drain well, this allow stagnant urine to form stones and infection.
Many of us are like me or worse, both kidneys are full stones and have neprhocalcinosis, which is where the tubes themselves are filled with calcium....only 10% of people with MSK have problems but those of us who do live with constantly passing kidney stones, (I passed 7 small ones in 2 months this year), and infection. Also to the mystery of the doctors someone of us live with chronic unexplained pain when not stone IN THER URETRER or infection SHOWS ON TEST.(small stones and as some have seen even some larger one get missed by x-ray machines and infections that do not show on standard test is very common!) I wrote and article and believe that biofilms are at the root of it, attaching to the stones. Many patients become pain free on antibiotics. Non that I know of have had unsterile medical equiipment used on them so they are able to take a low dose or normal antibiotic to, CONTROL THE BACTERIA THAT ARE SLOUGHING OFF AND MAKING THEM SICK. We do not have a complete answer as to penetrating it!
I as well as a few others have this along with IC>


The more I read the more I realize I don't know.
I have also checked into EDTA but was told the my IC Bladder could not tolerate it and if I was going to do it the best way would be rectal suppostories. (But for me it would seem that putting the whole med down there some would get on or in my bladder..., I have steriods suppositories for other "issues" and I think they seem to also help my IC, so I would be careful with EDTA)

We are actually trying something I read about. Dr. Costerton is the researcher really on top of biofilms, but doe'sn't respond to private people...., he just wrtoe a new book on them as well.

Anyway, they found that low level electrical current along with a high dose of antibiotic can penetrate the biofilm. My family bought me a really nice rife/Energy Wellness machine. MY doctor and those around me were very encouraging for me to try it. For me for it seems to have the infection currently under control.

It is good to know there are other's out there seeking and searching for answers...
we just have to keep in mind IC is complex and the answer for each person may be different. (I often picture it like a group of blind men trying to describe an elephant by what they feel..... they can only describe their part which would be very different between them..., and could lead to so addiment arguements... LOL..)

[MarthaF]

Great post Marianne! You are on to something that is cutting edge (no pun intended)! You are right that the challenge, if we are dealing with biofilms, is to break them up. Ruth ****, NP, who specializes in treating chronic bladder infections and was a patient with Dr. Fugazzotto, has just begun to use EDTA with patients who have trouble clearing infections. She learned about its use as a chelating agent from an MD at a conference she attended. He was using it for Lyme Disease.

I did some research on EDTA and found that, yes, some research on this approach is going on. Here is what I found:

http://www.ce.cmu.edu/~jeanne/posters%20for%20web/VanBriesen%20BMES%20Abstract%20EDTA.pdf

This article did not give the location of the research so I looked further and found this:

http://www.ce.cmu.edu/~jeanne/posters%20for%20web/Kim%20and%20VanBriesen.pdf

This gives more detail and if you look at the "Conclusions" in the lower right corner you will see the same thing you said - there is a need to use antibiotics to treat the released bacteria. This is what Ruth is using.

We would all be interested in any other research you have found using EDTA and treating biofilm infections this way. Ruth has the EDTA compounded in capsules. I think it would be great if you called and talked to her and she can fill you in with more detail. She thought it made sense to her that this is what we are dealing with and EDTA was a logical approach. She has only been using it a month or two and I am sure would like to know of others who are thinking along the same line.

I think your analysis of your own situation makes sense. Enterococcus is by far the most common pathogen the lab is reporting to Ruth (80-90% of cases) and it is the most overlooked by doctors. They are still back in the dark ages looking for E. coli since that is what they were taught in med school. I have sponsored research and we found that 67% of patients were positive for Enterococcus via PCR testing. The labs and doctors overlook it, even if they find it, and call it a contaminant. Dr. F. was the first to give it the credibility it deserves.

Thanks for bringing this up and adding to the research some of us have been doing. We have long since learned that if we don't do it ourselves no one else will. Biofilms have been known for over 30 years and are just beginning to be recognized. Please pass on any articles you have found no matter what part of the body is affected. We are on the same wavelength!

Martha

[futurehope]

I'm glad you all brought up the subject of using chelating agents to break down the biofilm. Why am I glad? Because I was thinking that if the germs are encapsulated, you could take ABX up the ying-yang and it won't touch them. After all, they're encapsulated. This is really a necessary step because then the offenders could be identified and treated appropriately, provided that biofilms do not reform.

But, another subject we are all dealing with is do we have a infection that has not been picked up by the standard urine culture? This, to me, is another topic. These infections are detectable when using the correct diagnostic tool and should be treated.

I didn't want to mix up the idea of bacteria in biofilms, and poor diagnostic cultures. I think I have it straight now.

If anyone learns anything new about bioflims and what to do about them and how to prevent them, let us all know, okay? Thanks.

[MarthaF]

I see what your concern is. You have to realize that all of this is pretty new stuff - the fact that we are dealing with biofilms in the bladder. I just found the first article on research by the Japanese about 1 year ago. No one in the US has reported seeing them that I know of, but the know they grow in many other places in the body. We just know they are doing lots of research and one day they may figure out what the Japanese did.

The closest research to this is the Hultgren Lab's finding of "pods". These were in mice, however. But in the description they say that the bacteria can escape (become planktonic) and that's when they become culturable and treatable. But if there are still bacteria in the pod then it can escape later and cause another infection, etc. etc.

I know many with bacteria who have been treated for several months and are well. Ruth **** has been well for over 16 years. Holly has posted here about her successful treatment, so it is possible. We don't know whether they did not have a biofilm or if the antibiotics were able to penetrate it. There are still a lot of unknowns and those of us reporting on this theory are not scientists so we can't test this out. But if Hultgren's lab is right then this would explain recurring UTIs, from which many suffer. He does not mention other kinds of bacteria but hopefully they realize E. coli are not the only type to cause a UTI, and hopefully they will move to human subjects.

I think treatment with antibiotics is justified when bacteria are found and there is no other explanation for the symptoms. There should be relief at least from the current infection. Our hope is that they will soon do more research with how to break up biofilms, and prevent them in the first place. They form on catheters and other devices installed in the body so are a very serious problem in other areas of medicine.

Those of us discussing this are only speculating from our reading and thinking about our own situations. We aren't medical experts but can read what the scientists are saying and try to apply this to ourselves. A short article about the Hultgren lab work is here: http://lib.bioinfo.pl/pmid:17074856
In the longer article they refer to these intracellular bacterial communities as "biofilm-like" and in the mice, at least, they were able to see them. This lab receives large grants from the NIH since the health community knows that UTIs represent a huge expenditure for treatment. It is a high priority with them, but so far they have not accepted the fact that many undiagnosed infections exist among those diagnosed with IC, i.e. negative cultures. Just because the routine culture does not find bacteria doesn't mean it isn't there.

The longer the infection goes undiagnosed the more it can become established.

Martha

[meg31]

Hi All!

This is a very interesting thread! I thought I would mention that I am currently taking EDTA with my antibiotics in an attempt to break up biofilms that might be the cause of persistant infection in my bladder.

I guess I am kind of a guinea pig but I don't really mind. I started taking the EDTA 3 months ago and I have had a negative broth culture ever since (this hasn't happened in over a year). Not sure if this is a coincidence or not but I'm thrilled. Another thing is that the EDTA has virtually NO side effects (for me that is). I will definitely keep you all updated!

Thanks for all the interesting posts.
Meg

[Romans8:28]

Meg,
What form of EDTA are you using and how is it being administered? (Oral, IV, rectal suppository etc.)
I have been interested in this but have been told it would really irritate my bladder. How are your IC symptoms on it and now that your cultures are clear are your IC symptoms gone?

Shelly

[meg31]

Hi Shelly,

I'm taking the EDTA in 100mg capsules. I get it from a compounding pharmacy. It hasn't caused any bladder irritation for me yet. In fact, I've had no side effects at all from it!

My IC symptoms are not completely gone. My bladder pain comes and goes but overall it is much better. I've heard it takes at least 6-9 months for the bladder wall to heal once it is infection-free though so I'm still hopefull. Hopefully, as time goes on, it will get much better.

Meg

[Romans8:28]

That is very encouraging! I wonder if having it compounded helped..., plus I would assume the oral is less irritating then the IV. Right now my infection seems to be under control so think I will leave that issue alone. if and when it returns, then I may try the EDTA.... I have heard that some use it to break up calcium deposit in the arteries etc. so wonder how it might work on my stones.

The other issue is if we do work down into the stones are we then releasing more infection into my body..., this is a concern and part of why the 6mm one in the left kidney has not been blasted!

Right now I am struggling with a new issue.., seems we got the IC and Infection at least uncontrol with treatments etc. But I continued to have increase side pain etc. The new CT scan diagnosied me with something I have never heard of or my URO, called Pelvic Congestion Syndrome. It appears this can cause a lot pelvic pain in women but is very hard to diagnoise. many because the veins are dilated when sitting or standing and all test are done while you are laying down. Amazing the CT scan showed the veins going to my ovaries dilated.

So now we have a new difficult to treat issue and are trying to make decisions!
I think this is why so often IC is so difficult to treat, because it usually comes with other problems too.

thanks so much for the info. Meg, i do hope this cures all your bladder symptoms.

Shelly