Broth culture

[Scomegys]

I have been told I have IC just recently, in June. Now, I expect to be recovering from IC soon, and in fact I believe I am almost there. Now, I eat what I want. I have minimal pain and frequency day by day. A year ago my doctors thought I had a UTI but nothing grew out in a culture, so they thought I was a hypochondriac. I was sent to the Urologist and was told I had IC. When I learned that nothing could be done to get rid of it I got so frustrated that I did my own research. I couldn't believe that there was absolutely nothing a person could do to get rid of this, that it was "Incurable." There had to be something out there that people were doing. Besides that these symptoms were too much like a massively severe UTI without the blood to not be some form of a bacterial infection...in my opinion... even though the doctors said that it was not one. I always wondered why when my doctor put me on Ciprofloxacin for a week my symptoms dyed down but when I went off of it they came right back with a vengence!
So I did some researching over 2 months and found a website that discussed IC. On this website a new research study was discussed that involved bacteria.
This study found that that about 90% of their research volunteers who have IC actually have gram positive bacteria growing in the bladder and this type can not be found on dry agar plate cultures (the form that is used for UTI's). This was why the people have symtoms of a severe UTI but nothing grows out on the cultures. The majority of doctors only give patients a dry agar plate culture for UTI's. However, this bacteria can only grow on wet surfaces (which is why it grows in your bladder and attaches itself to the wall of your bladder causing inflammation and a break down of the tissues among other things). This culture is callled a Broth Culture. The Website listed only two places in the US. that do broth cultures. When the culture comes out positive for the gram positive bacteria in IC patients they were put on long-term antibiotics such as doxycycline and augmentin (3months-1year and Re-cultured each month until the bacteria is gone). After that the patients recovered from IC and lived a normal life, (and ate whatever they wanted). So I had my sample over-nighted to one of the labs to have this culture done. When I got my results, low and behold I had two types of gram positive bacteria in my bladder. Strep D Enterococcus and Staphylococcus. This is a new IC study so many doctors do not know about it yet but it seems to be promising! This may be a controversial subject for some, but I hope more doctors become knowedgeable about this culture.

Stephanie

[Katrina]

Thanks Stephanie.....I am on longterm antibiotic therapy...and although I am possitive it helps my IC....it is not enough....but like you when my IC was "younger" it acted the same way....getting better while on antibiotic and worse without it.

There are many people on antibiotic therapy....most different than mine....some just to avoic the multiple bacteria that they get....I don't doubt that bacteria have something to do with IC....but I suspect for some of is there is more to it than that.

[Scomegys]

Thank you for your reply Katrina. I hope the therapy works for you. Ruth **** who worked with Dr. F in finding bacteria in people recovered from IC. But I hear some people need to be on it for a year or maybe 2 depending on how long they have it in order to get rid of it.
Good luck,
Stephanie

[ICNDonna]

Some people feel they have had excellent results from long term antibiotic therapy. Others have had some significant problems.

Donna

[pnut]

So, what kind of antibiotic helps you? After getting your results, did you talk to your doctor and let him/her know of what you found out? What kind of antibiotic are you on? This sounds so right-on with this. I have gone in soooo many times feeling like I had an infection, only nothing grew and I was sent on my way to suffer. Could you let me know what antibiotics help you with your flares? I'm in a MJR one now and I was given Keflex today. I wondering if this is a good one and if it will help? Hope to hear from you soon, Thanks for the info. :)

[Scomegys]

Hi,
Well, I took Cipro for a month and my symptoms are pretty much clear now. But I also have been doing the "Water Cure" at the same time. I hear most people's symptoms don't start to get better until maybe 5 or 6 weeks into it. I also have not had the problem for a long time. Now I am on Macrodantin for 3 months but at a low dose. I've been told that the best antibiotics to take are Augmentin, doxycycline, and Macrodantin. Dr. Fugazzotto is the one in charge of the research. But now there is also information and research on the thyroid as the culprit. Some people have low body temperatures which causes problems with hormone levels and enzymes in the body which makes people more likely to have bladder infections and problems since the bladder is easily affected by hormone levels and body temperatures. The thyroid is supposed to help regulate the body temperature among other things. So it was suggested to me that I take my basal body temperature before getting up out of bed in the morning, by using a non-digital thermometer and placing it under the arm. And to do this for a month, chart the temperature. So I will be doing that soon. The ICIC website has all of that information also. If you click on articles on the left hand side of the website all sorts of articles comes up disgussing bacteria, broth cultures, where to send your sample, and about the thyroid connection. They say a thryoid problem can be possible with out anything showing up on a blood test, as long as your body basal temperature is too low.

[Indy]

HI. I am wondering the exact website you mentioned for the ICIC. I want to research this.

I am planning to do the broth culture on my own and depending on the results, take them to one of my more aggressive doctors. I just know this is a culprit.

[twiggy]

I would be interested to hear more about this, too. I have been on antibiotics for two years--macrodantin and cipro. I feel better while on the antibiotics but, the minute you try and remove them, bang, I get really sick. By low body temperature, do you mean that you are cold all the time. So much of the time, I just can't get warm. However, I am a slender person with very little body fat.

[kelly McC]

I also am interseted in knowing how to do this? Where do you send it? Is it exspensive?
Thanks,
kelly

[KEC]

I have started on doxy yesterday and will be on it for 1 month to see if it will make a difference. I'm hoping for the best KEC

[ICNDonna]

You can read about antibiotic therapy in the Patient Handbook on this site. The link is http://www.ic-network.com/handbook/antibiotic.html

Donna

[MarthaF]

There are many good articles about using a broth culture and antibiotic therapy. There are links to Dr. Fugazzotto's website and there are patient stories.

Dr. Fugazzotto, who pioneered the use of the broth culture for chronic urinary tract symptoms, it still working and will do the culture. He can be contacted at 605-342-8989 and will give instructions for mailing a specimen. He is retired but is doing this for research purposes. There is also research being carried on by a university lab to validate this method of finding "hidden", slow-growing bacteria which does not usually show up on an agar plate culture. Broth culturing is an old technique which fell out of use when the quicker, cheaper agar plate came into being. Labs would prefer to use the cheaper method despite being unable to find pathogens in chronic patients and, hence, usually report "no growth" to the urologists who request patient cultures. Often bacteria is there and not reported. That is one reason so many respond to antibiotics. However, the labs doing broth cultures do a sensitivity test to find the best antibiotics.

Suggest doing research on this method to see if it makes sense to you.

Martha F

[MarthaF]

Please email me privately if you would like the information about labs doing broth cultures. mfmidlo@aol.com

[Scomegys]

Thanks everyone! Martha is very knowledgeable if you want more information on the broth cultures. I don't think I can post websites on here. I think there is a rule on that so if anyone wants the website PM me.

[Portia17]

I just went to google and put in Dr. fugazzotto name in yes it came up. The telephone number he has listed is OUT OF SERVICE. So know that do i do
Number on his website was 605 942 8989 - out of service. The number that someone put on here is not good either just beeps. So where is this doctor's phone number now
Thank you

[Scomegys]

I just received information that Dr. F is in the hospital so that could explain why the number is out of service. You can also get a broth culture done at United Medical Lab, McLean VA 22101: 703-356-4422. If this information gets cut out of here, just PM and I can give you the info that you need for a broth culture.

[Portia17]

scomegys

Thank you so much. I called them and spoke to a dr. chen and I am sending my urine sample off early next week. I will let you know

Thank you so much
Mary

[Katrina]

Good Luck Mary!!!

[MarthaF]

Dr. Fugazzotto is in the hospital although he was culturing until last week. We hope he will be back working but only time will tell. Meanwhile I suggest you send a specimen to United Medical Lab in McLean, VA. You can call them at 703-356-4422 and they will give you instructions. You can to this on your own or with a doctor's referral. They do the same type of culture as Dr. Fugazzotto and find the same bacteria.

Martha

[Portia17]

Hi Martha

Thanks for the informatoin. I called them and will be sending mine next week and they did say that Dr. F still works there. God bless him....

[boukie]

HI. I am wondering the exact website you mentioned for the ICIC. I want to research this.

I am planning to do the broth culture on my own and depending on the results, take them to one of my more aggressive doctors. I just know this is a culprit.

I noticed your in TO, I am in Torrance. Did you do the broth culture? Let me know all the details.

[boukie]

before doing the broth culture is it ok to be taking aloe vera by desert harvest? or does this not affect the test, whether it will show bacteria or not.

[MarthaF]

I don't think aloe vera would affect the results. The main treatment to be off of is any antibiotics. I would say two weeks to be on the safe side.

[boukie]

thanks

[lauraheather]

How much does it cost to have a broth culture done? I am assuming insurance won't pay for it as each patient is sending their own cultures not through a doctor.

[MarthaF]

United Medical Lab charges $129 for a broth culture. They require payment at time of service but if you give them information and ask them to file to your insurance company they will do that and reimburse you if they receive payment from your company.

[boukie]

Has anyone had a broth culture done and the results came back negative? I am just wondering.

[ICNDonna]

Once in a while someone posts that they had a negative culture report, but they are few and far between.

Donna

[boukie]

Once in a while someone posts that they had a negative culture report, but they are few and far between.

Donna

But did they have a broth culture or just a reg culture. It's always negative from a reg culture thats why I am more concerned about the 'broth culture' have you done the broth yet?

[ICNDonna]

I have not and don't plan to. I spent 25 years working in a major hospital where I learned that urine testing needs to be done within some very strict time lines to be accurate. Mailing them would not fit anywhere close to those time lines and even one little microbe could multiply many times before it reached its destination.

[CathyKi]

I just got my results back from United Medical Labratories and I don't know how I am suppose to understand the results. Can anyone familiar with this test help me?

[ICNDonna]

Your doctor should be able to help you with this.

Donna

[boukie]

I just got my results back from United Medical Labratories and I don't know how I am suppose to understand the results. Can anyone familiar with this test help me?

I thought the results get sent to your dr? I just did the broth on tues. so the lab got it on wed. how long did it take before you got the results back. Did it show any bacteria? Very curious, and Im anxious waiting to hear my results.

[CathyKi]

Hi, It took a little over a week to get my results back and on Tuesday I will be discussing it with my Uro. It said I had e-coli and streptococus in the broth cultures and the regular culture. I will let you know what my doc says. Are you planning to show your results to a doc?

[boukie]

Hi, It took a little over a week to get my results back and on Tuesday I will be discussing it with my Uro. It said I had e-coli and streptococus in the broth cultures and the regular culture. I will let you know what my doc says. Are you planning to show your results to a doc?

Yes my results will be sent to my urologist. Let me know if your dr. puts you on amoxicilan etc. I've read a lot of IC patients have bacteria. I will let you know when I get my results back. Maybe this bacteria is the cause of IC. It does make sense that bacteria for a long time can put damage on the lining of the bladder.

[jen74]

How do you go about getting a broth culture? I talked to urogyne about it and he does not know much about it and he is one that does not believe IC is caused by bacteria. I on the other hand do believe bacteria is in some way a culprit. Just that our labs are not that knowledgable as to how to get a good or sensitive culture. My urogyne wants facts though. I mean he said he has no problem sending a culture, but he would like to speak to a doctor or someone who has done this culture, and where and how they sent it. He said he would went to know what lab it is, and how reliable they are etc...
I want to do the broth culture, just to see. unfortunately, I am allergic or have severe reactions to most ALL antibitoics. So I have no clue as to how they would treat me if I did have a weird bacteria. I mean I am allergic to pennicillin which is what I have heard what they use alot of the time. Also, long term antibitoics can realllllly mess you up in the long run. I know for a fact. I had to take antibiotics a few years back before I even had IC. It was for a nasty strep throat infection. Well, I was on amoxacillin for 10 days, then augmentin for another 7 days. Well, I ended up getting really messed up with my stomach. Ever since then I have had awful motiliyt issues of the stomach and intestines. It has been over 5 years and I am still messed up. I mean I can no longer eat gluten foods, and I can only eat a hand full of things that I can tolerate.
Also, my one doctor said that being on antibitoics that long, you will grow a reistance to them, and if you ever have a severe life threatening infection that requires pennicillin, you may be in hot soup becuause it wont work for you. I mean that is a known fact that if you take an antibiotic for any long length of time, it will no longer work for you or you may even become allergic to it. This sucks!
ANyhow, I still would like to get a broth culture done, but I need some info and someone I could call or have my doc call, ( someone reputible, a doctor?) or otherwise he will think it is a sham. Any info is greatly appreciated.
Jen

[boukie]

How do you go about getting a broth culture? I talked to urogyne about it and he does not know much about it and he is one that does not believe IC is caused by bacteria. I on the other hand do believe bacteria is in some way a culprit. Just that our labs are not that knowledgable as to how to get a good or sensitive culture. My urogyne wants facts though. I mean he said he has no problem sending a culture, but he would like to speak to a doctor or someone who has done this culture, and where and how they sent it. He said he would went to know what lab it is, and how reliable they are etc...
I want to do the broth culture, just to see. unfortunately, I am allergic or have severe reactions to most ALL antibitoics. So I have no clue as to how they would treat me if I did have a weird bacteria. I mean I am allergic to pennicillin which is what I have heard what they use alot of the time. Also, long term antibitoics can realllllly mess you up in the long run. I know for a fact. I had to take antibiotics a few years back before I even had IC. It was for a nasty strep throat infection. Well, I was on amoxacillin for 10 days, then augmentin for another 7 days. Well, I ended up getting really messed up with my stomach. Ever since then I have had awful motiliyt issues of the stomach and intestines. It has been over 5 years and I am still messed up. I mean I can no longer eat gluten foods, and I can only eat a hand full of things that I can tolerate.
Also, my one doctor said that being on antibitoics that long, you will grow a reistance to them, and if you ever have a severe life threatening infection that requires pennicillin, you may be in hot soup becuause it wont work for you. I mean that is a known fact that if you take an antibiotic for any long length of time, it will no longer work for you or you may even become allergic to it. This sucks!
ANyhow, I still would like to get a broth culture done, but I need some info and someone I could call or have my doc call, ( someone reputible, a doctor?) or otherwise he will think it is a sham. Any info is greatly appreciated.
Jen

dr paul fugazzotto google his name UNITED MEDICAL LAB: 703-356-4422. Address is 6720 Old McLean Village Drive, McLean, VA 22101. Every urologist is going to say they don';t know much about the broth culutre. Mine said the same thing. There are evidence that most IC patients have strep D bacteria in their urine. When your dr send it in for a culture on their end it will come back negative because its only being culutured for 16 hrs not 5 days like the broth. I hope this helps.

[jen74]

Thanks for the info, I appreciate it. The problem is, my uro wants names of doctors who do this culture and hard facts. He will likely say that there is no way in telling how long your urine sat out since it was being shipped by mail, and that is that case, bacteria will grow. I know this is what he will say, as he has said it before when I mentioned the broth culture. I gave him info on Dr. Paul Fugazzotto, and he even called a number I found to talk to Ruth Kritz (I may have spelled her name wrong), and he said he could not even get through. He said he would be happy to do the culture, but he wants to talk to a doctor or someone who knows about this and how reliable this is.
Jen

[boukie]

Thanks for the info, I appreciate it. The problem is, my uro wants names of doctors who do this culture and hard facts. He will likely say that there is no way in telling how long your urine sat out since it was being shipped by mail, and that is that case, bacteria will grow. I know this is what he will say, as he has said it before when I mentioned the broth culture. I gave him info on Dr. Paul Fugazzotto, and he even called a number I found to talk to Ruth Kritz (I may have spelled her name wrong), and he said he could not even get through. He said he would be happy to do the culture, but he wants to talk to a doctor or someone who knows about this and how reliable this is.
Jen

You do the urine test at home and mail the urine sample to the lab. Your dr. jsut gets the results. so I don't know why your uro is so vs. it.

[boukie]

dr paul fugazzotto google his name UNITED MEDICAL LAB: 703-356-4422. Address is 6720 Old McLean Village Drive, McLean, VA 22101. Every urologist is going to say they don';t know much about the broth culutre. Mine said the same thing. There are evidence that most IC patients have strep D bacteria in their urine. When your dr send it in for a culture on their end it will come back negative because its only being culutured for 16 hrs not 5 days like the broth. I hope this helps.

you can email me at lisaschlomer@hotmail.com every person on this network who has done the broth culture has come back w/ bacteria.

[jen74]

Hi again.
I told my uro about this culture and his answer was that if they did a bunch of random urine cultures on people without symptoms, they would likely also have these bacteria in their bladders as well. He said people do normally have some bacteria is their baldders, even though they say our urine is sterile. I do not know about that, but that is what he said, and what another doc I saw said the same thing. I will ask him again about getting this culture done, but I am sure he will not put much faith in it unfortunately.
Jen

[MarthaF]

Hi,

I will chime in here about broth cultures. Dr. Fugazzotto pioneered the broth culture for chronic bladder symptom patients. The culture had been used years ago and then fell out of use for UT symptoms when the shorter agar plate culture came on the scene and is now used by all labs since it it good at finding E. coli. The doctors and scientists have learned that UTIs are caused by E.coli. But the fact is that there are many types of bacteria that can cause UTIs but they aren't found by the routine culture

Dr. Fugazzotto no longer works but United Medical Lab in McLean, VA (unitedmedicallab.com) does broth cultures and you can send it on your own. The instructions are on the website. Dr. F. explained to those of us who worked with him that with the virulent forms of bacteria like Streptococcus that are commonly found in IC patients it doesn't matter how many colonies there are. So even if mailing overnight does allow for more growth there is no such thing as spontaneous generation and nothing will show if it was not there to begin with. With broth they don't count colonies. A broth culture consists of placing the specimen in a nutrient broth for 5 days or more and allowing any bacteria to grow. Some species are very slow growing so they would not show up on an agar plate after 24-48 hours. E. coli will, so that is what all the labs find and report. Even it they find Enterococcus, for instance, they may just disregard it as a "contaminant" since it probably won't have as heavy a growth as E. coli which grows easily. But Enterococcus and Stapylococcus are also part of the intestinal flora, like E. coli, and it is just as easy for them to get into the urethra as it is for E. coli. I agree with your doctor that most urine is not sterile and some people can tolerate bacteria, but for others almost any species can cause symptoms. I have pointed out before that UCLA has developed a high tech test to find urinary pathogens and look at how many they mention: http://jcm.asm.org/cgi/content/abstract/44/2/561
This is an old abstract and I don't know why the test is not available in the labs for us to take advantage of.

We know that Quest Diagnostics has a better culture called "Urine culture, special #3021" However, they may require a catheterized specimen. A few have used it and been found to have more bacteria than showed on the routine. Your doctor could check with Quest and ask about a more extensive culture that reports all growth. I don't think most doctors even know that there are better cultures available.

As to the antibiotics, usually there is more than one that will treat any bacteria that are found. I know it is not good to be on antibiotics for long term but if these infections were detected at the first sign of symptoms they would probably clear up faster. But we are constantly told we do not have an infection due to inadequate culturing so the bacteria go untreated for years. It was two years in my case before Dr. Fugazzotto found Enterococcus. The real key is better culturing since I am sure the doctors would treat an infection if the labs found and reported something. A week or 10 days for E. coli is not adequate. Enterococcus is very common but is not being found.

There is much more research to be done but first there has to be the recognition that bacteria are involved for many. It is obvious to us that they have not found a cause for chronic bladder problems so are only treating the symtpoms.

We know how long it took for the mainstream to believe that stomach ulcers are caused by bacteria. Now they know that is it H. pylori, although they used to say ulcers were due to stress and diet. H. pylori is found in the stomachs of many of the population but only a percentage ends up with an ulcer. They don't know why.

Martha

[DreamChaser]

I've been given enough Cipro for only 5 days until they determine whether I have a UT or not. Any advise for when I come off the Cipro? I'm scared my fare up will be worse.

[CathyKi]

I have run my results by two different urologists today. One, who is a very well known authority on IC, laughed and wanted to know how much it cost. He said there is no way to get a clean catch unless you catheter. The other who is very willing to help, was willing to prescribe antibiotics, but I am not sure if I want to bother with it now. I think this broth thing could be a scam. I did find out some interesting information today.

A new OAB is coming to the market called Sanctura XR and it is suppose to be better than all the others. I got some samples so I will post how I like it.

And they believe they have discovered a urine marker, a protein defect, for IC which will help in diagnosis and would suggest it is in our genes. He said that the wiring is there and an event turns the electricity on. Like a stressful event, urinary infection or even an allergic chemical reaction.

[jen74]

Hi Martha.
Do you have **** number by chance? I could give it to him and have him call her. I am sure he would be willing to do it. I gave him info on the broth culture and he said he tried calling the number I gave him but got no reply. I wonder though. Maybe I gave him a wrong number. It really makes sense what you are saying. I honestly believe that it is an infection as well. My dad came up with a theory that really made sense too. He said that when we take certain antibitoics, ( not all of them though), they can kill off good bacteria that we have in our bladders that maybe help keep the bad ones away of keep them from multiplying. But when these good bugs are wiped out from the antibitoic, then these bad bacteria's take hold. I mean this is exactly what happens with the gut when we are exposed to too many antibitoics. I thought maybe this did make some sense too since alot of people said their IC started after taking certain antibitoics for a UTI at some point. Just an idea, but who knows. I just wish I could get my urogyne to believe in the broth culture. He needs to talk to a doctor or something in order to believe it I think. I would appreciate Ruth's number though, maybe she can talk to him. Thanks.
Jen

[CathyKi]

****is her number and she will charge. I wouldn't give them any more of my money.

[MarthaF]

Why don't you ask your doctor to request a more extensive culture from Quest Diagnostics if you don't trust the broth culture? Quest and LabCorp both offer other cultures and your doctor can ask them report ALL bacterial species found. It would be great if the big lab corporations would offer better cultures. Knowledgeable scientists know that the 24-hour agar plate does not show all bacteria that could be present.

As to the APF factor that they say could be a marker - they don't know why it is present but cannot rule out the fact that it could be infection that is causing it. No scientist has come up with a cause. What do you and your doctor think is the cause?

It took years and years for the mainstream to believe Dr. Barry Marshall when he said that H.pylori caused stomach ulcers. Eventually they awarded him the Nobel Prize.

Martha

[boukie]

My urologist is clueless he didn't even know about the broth culture and when I asked about aloe vera and cystoprotek he said 'well it can't hurt you can try it. he is clueless I know more than he does and he's a specialist.

[ICNDonna]

Very few, if any, doctors will know about all of the over-the-counter/natural/herbal remedies there are available. There are literally many thousands of them out there. He is being reasonable in suggesting it can't hurt to try some of them; many doctors will look at the contents and can tell you if there's anything that might conflict with prescription medications.

Donna

[jen74]

Hi Martha.
I will ask him about doing a more extensive urine culture, maybe he will do that since quest offers it. I did have one done awhile back checking for ureaplasmas and microplasmas. It came back clear. I think it was also grown on an agar plate, but I am not 100% certain. I know they let it grow for like 18 days or something.
I believe the broth culture is reliable, but I know that he will not, especially since no other doctors out there use this. I agree with you that something has got to give here, and they need to do more in-depth culturing. I wish they offerd the broth culture at quest and other labs more readily. As far as what he thinks IC is caused by, he believes it is many factors such as being immune system disorder, epilithelil(sp)defect in the bladder, neuropathic, and maybe even genetics, though there is no proof to this day of what actually causes IC. He disregards the bacteria thing I think because he said he has had patients take all sorts of antibitoics long term, and they still have IC. He said he had one women on every antibitoic there was and she still has IC. He also said that some women with IC that he treats have days and months where they feel better, but then months when they feel awful. He said that if it were a true bacterial infection, there would be no feeling better. So I just dont know. I do personally think it could be some kind of bacteria though. I mean that is how my IC came on, suddenly, just like a UTI. I guess if it is bacterial, maybe in years down the road, there will be a doctor who will prevail just like Dr. Barry Marshall did with the H.Pylori. I can only hope they find a cause and and cure for everyone who is living with this disease.
Jen

[DreamChaser]

I believe what you dad said. Last year I had to take antibiotics and it caused both an IC and IBS flareup. My doctor explained what you dad said and told me to take probiotics. Since I'm now on Cipro while waiting on my test, I'm taking the probiotics just in case. It puts the good bacteria in your system like eating yougurt.

[Emmytoo]

I'm sort of interested in trying a broth culture just to see if they find anything. I'm just worried that contamination would make the report worthless. And if they do find something, what if my doc won't order antibiotics?

Em

[jen74]

Hi Em.
You could have them do a catheterized specimin to maybe cut down on any contamination, but there is even still a chance of contamination then.
Jen

[MarthaF]

I have had many, many broth cultures and I don't think any were contaminated since treatment for the pathogen eliminated my symptoms. If the specimen is a midstream clean catch specimen and carefully collected, it should not be contaminated. My concern has always been that if I did not have a really extensive culture I might be infected without knowing it. I went through that for 2 years until I had my first broth culture.

A microbiologist for a large urology practice told me they often find Enterococcus but just dismiss it as a "contaminant". Enterococcus, and many other bacteria, are inhabitants of the intestines just like E. coli so why would we think that they would not also get into our bladders and be just as much a pathogen as E. coli. It is just that E. coli are easily detected on the 24 hour agar plate used in labs and so are considered the predominant cause of UTIs. And since some bacteria do not grow to the degree that E. coli do they are not found in large numbers, but this does not mean they are not pathogenic. If you think about it when someone has a sore throat and a culture finds Streptococcus they do not count how many colonies there are in order to diagnose a Strep throat infection. Bacteria are different in many aspects and some are virulent even in small amounts.

Martha

[boukie]

Well I am still waiting to get my results back. You need to find a diff urologist if he/she does not offer you any antibiotics. I have a twin sister and she has IC as well. We both have done the broth. Well I will let you know what our results are.

It's just if the dr. does a reg culture from the office it will come back negative. The broth is a 5 day culture. A reg. culture taken from a dr office only takes 24 hrs to do, and it's not enough time to let bacteria to show up.

It's the same thing w/ ulcers. It took many years for dr. to believe the cause of ulcers were from pylori bacteria. I have a feeling it's the same w/ IC.

[formom]

DreamChaser, what king of probiotic are you on? I always hear people say they take one but I have no idea what to look for or where. Please let me know. Thanks, Renee'

[DreamChaser]

There are 2 kinds that I have tried. One was called Fiora and the other Culture. You can find it where they sell Monistat. I bought mine at WalMart.

[notmybestday]

I'm considering getting this test done, but I'm confused about their insurance policy. So we have to pay the full price but then we can file an insurance claim? How does this work? I'm sorry -- I'm new to this.

[MarthaF]

I think it would be best if you call and talk to the lab about their insurance policy.
Martha

[boukie]

They found ecoli in my broth culture same w/ my twin sister. we are taking antibiotics for 2 wks.

[boukie]

My twin sister and I both got our results back from the united medical lab, they found e coli in both of our cultures. I am now taking antibiotics for 2 wks, but I am wondering if that is long enough. I'm just afraid the e coli will come back. I felt the same way, there is no way there is not a cure for this. There must be a reason why....I believe it's bacteria that has made a home in the bladder.

[boukie]

I got the results faxed to me personally. I am upset because my Dr. lied to me. I have strep b and my twin has strep D. I asked if we had any strep that showed up and he said no. Lie!!!! I am extremely irate and very upset about this.

[boukie]

I have strep b and ecoi my sister has strep d and ecoli. We are only on antibiotics for 1 wk, which is not long enough. I am thinking about calling Ruth **** for help.

[Emmytoo]

I talked to my doctor and decided I will not do broth culture.

Em

[Pam H]

Hi,
I have delt with IC for over 18 years. I have done alot. I just stumbled on this Broth Culture with Antibiotics. I belive it works and this is why...........

I have been trying to find an answer to what happened to me in 2004.

I had an accident I was in the Hospital for about a week. I had IV Anibotics for 2 days when I got home my Bladder was perfect, I peeed normal I was in tears all the pain was gone, But it only lasted a Month and 1/2.

I had done antibiotics before but the Oral antibiotics always caused a yeast infection or intestnal problems but this time was differant. The IV Antibiotics are much differant then oral I belive :) IV Antibiotics did NOT cause any problems for me. They cured me for a short time. :)


I have a question so I know Oral Antibiotics don't work for me to many problems, so why don't they do IV Antibiotics????

I have went to my Uroligist and the surgen and both say it dosn't make sense, all I say is, it worked for me but was short lived. Since then I have given up because I couldn't find anyone to belive me.
I am hoping someone on this site will help me and know about IV antibiotics.
Thank You
Pam

[boukie]

Antibiotics respond diff. from people to people. It sounds like you had some sort of bacteria and the iv antibiotics did not get rid of the bacteria because you did not take it long enough.

[Pam H]

:hi:
Yes Boukie I belive you are right but tring to get a Doctor to listen to me was like pulling teeth. I tryed everything to get the Doctors to put me back on the IV so I could get completely better. :) :hi:

Thank YOu so muc for your reply

[boukie]

I talked to my doctor and decided I will not do broth culture.

Em

Most Dr. dont know anything about the broth. But I don't think its a coicidence that they found e coli and strep b and in my twin ecol strep d. This is the same old thing from everyone who has gotten a broth done. Don't you think there is a connection here??

[Pam H]

:hi:
You bet I belive there is a connection. :) If they keep finding ecoli and strep. I wish there would be alot more studies done to help IC people.Thye need to be open to the fact of anything could be possible because all of our bodies are differant. :)

I have been looking for answers for a long time. I just happen to stumble on this site...........................

May I ask why EmmyToo decided not to get a Broth Culture done???? I saw that in your answer????

[Pam H]

I am going to be talking to Ruth tommorrow. (Monday) I am going to call her office tommorrow but I wasn't sure if I needed an appointment????

I also have already contacted the Lab last thrusday. I will be sending in all of the cultures tommorrow morning to Va.

Do you have suggestions about sending these cultures to the LAb? Did you use Dry ICe??

I belive that my husband has the Bactria, I will be doing fine then when we are intiminte I tend to get worse??? I don't know but I have always belived we were passing something all these years but all tests were Neg. So we both will be sending in cultures.

[Pam H]

Thank you for your replys

[MarthaF]

I think you are on the right track. Why not investigate the possibility of bacteria since you still have some symptoms.

There needs to be more research on a possible bacterial connection and it helps if more people post about their thoughts on this. I have mentioned before that the NIH-sponsored study at the U of MD called the EPIC study (Events Preceding IC) has shown that over 50% of patients participating said their symptoms started with a UTI. Bacteria are in and around our bodies and it is easy for them to enter the bladders. Something may then trigger an active infection. Only more research will explain why.

[Pam H]

:hi:
Hi Martha,
Thank YOu I agree with you. In all the research I have done an all my expeirance with my own I feel that is true.

Martha I am sending in my urine along with my husbands tommorrow to United Lab in VA.

I am getting the urine and semen tested for everything. Do you have anymore insite anything more ??? :hi: I want to learn more I hate being on this tetter/totter.

[MarthaF]

I think you are taking the right steps. I have sent you my email since I would like to know how things turn out.

[Pam H]

I will let you know as soon as I get the report.
If I send it tommorrow then I am guessing at least 10 days???

[MarthaF]

Yes.

[Babs RN]

Boukie,
I also wanted to mention that Strep B is a normal bacteria in a woman's vagina/reproductive tract. The only time it is of imminent concern is during pregnancy as it may be a risk to the baby during delivery. That is why they do GBS(Group B streptococcus)swabs during late pregnancy so IV antibiotics can be given prophylactically prior to delivery. As I said, the Mom is not affected by this bacteria, it is the baby and potential sepsis that is the risk.

Pam,
Most docs are very conservative with the amount of IV antibiotics they use. The risk of adverse reactions increases, resistant bacteria, and you begin to lose access sites as well. Most docs won't give long term unless there is a direct need for a severe infection such as wounds, pyelonephritis, abcesses, or Lyme disease. Cost is also a factor. Rocephin is really expensive, and ultimately for long term administration, most people need a PICC line or some other long term IV access which then puts you at risk for infection, clots to the device and damage to that vein. While I am not a doc, and don't know the specifics of your case, I am just offering my observations to help you maybe understand from the docs point of view. If you have concerns about your current treatment, you can also ask for second opinion.

I'm just adding my experiences with these meds and bacteria as a nurse who has worked Mother Baby, Special Care Nursery, ER, Med-Surg, Oncology, Recovery, and home health care.

Hugs and healing wishes,
Barb:smile tee

[Pam H]

:hi:

Thank You Babs for the reply. I didn't know it was expensive or the vein could be damaged. I really am thankful for your reply.
I just wanted help :)

I have gotten second & third opinons and finally dropped all Doctors a few years ago, because they didn't help. It seemed like all the stuff they did was Barbaric & made me in worse horrific pain to me. They kept guessing even when I told them that is not helping. I wish Dotors listened more to there patients.
All made me worse till a tragic accident happened and by a weird mistake I was given IV antibiotics which made my bladder better.

anyways I glad you are in the medical perfession, you seem very caring. :hi:
They need more people like you.

[ICNDonna]

I also have to wonder how many who feel they had UTIs before they developed IC actually did not have infections, but had early symptoms of IC. I know of many ICers who were given antibiotics based on symptoms when they didn't have infections. IC can be a real puzzle.

Donna

[Grrrrrr]

I never had a UTI or UTI like symptoms until I actually had a UTI in August of 2004. After that my IC formed, or whatever it is. I have a feeling (this obviously has probably been theorized before me, I am new to the boards) that IC is many different disorders. Maybe some people's IC symptoms are bacteria induced, while others are more like ulcer (Hunner's). I'm sure this is a "Duh" situation, but since Donna mentioned UTI's I thought I'd chime in since that is how this IC disaster formed. They did find the E.coli bacteria in my bladder at that time, and treated me with antibiotics, which killed the infection but left me with IC. I am working with Ruth at this time and hope she can help me achieve a little bit of normalcy ;/ Thanks for reading!

[Pam H]

I am glad you are getting help. I too am seeking help.

The only thing is that I wish I was for warned about the cost :) It is very expensive!! Yes insurance covers some but not alot.
If you don't have insurance I can see it would cost up front at least $2500.00 to start and then from there keeps going.

Just for broth cultures was $1200.00 at the VA Lab, talk to th doc 250.00 for 1st visit, then 50.00 every 15 minutes, then blood at 300.00, then urine for Iodine 50.00, NOw more blood at 250.00 for Lymes. I havn't even started the Antibiotics yet after I am on Antbiotics for a little bit I then test all those over again!!!! All I can say is WOW!!!

I hope this works I have tryed just about everything, I don't have money to throw away. I would do anything to be better.

I do want to be better I have been thorugh alot in 18 years, Just hope all this works.

Grrrr can you PM me so I can ask a couple questions.

[Pam H]

just bumping up

[MarthaF]

I just wanted to mention that a broth culture is $129.00. It is more extensive than the routine culture and is allowed to grow longer. If you added on other tests that could account for the cost you quoted, but the broth culture by itself is $129.

PM me if you have other questions.

Martha F

[Katrina]

:welcome: to ICN GRRRR

[Grrrrrr]

Thank you =)

[DreamChaser]

I've been taking the Santura. It's supposed to help with urgency.

[Melsven]

There working for me so far!

[jen74]

I am thinking about doing a broth culture, but am going to have a urologist take biopsies of the bladder and check for bacteria this way first. I know there is some debate on the whole bacteria causing IC, but anything is possible in my opinion. My urogyne does not think IC has anything to do with bacteria, but again, he cannot say what is causing it, so I think you should never leave a stone unturned.
As far as long term antibitiotics, you have to be very careful. Bacteria are learning to become resistant to these antibiotics, and fast. The last UTI I had was resistant to cipro, levaquin, gentamicin, amocicillin. The doctor said that this is because too many people are taking antibitoics too much. Resistance is a serious growing problem.
I was thinking about going on proplaxis antibitoics becuase I keep getting UTI's, but the doctors are reluctant to do this because of the high incidence of bacteria becoming resistant. They are afraid that one day soon, the antibitoics we have today will be useless against infection, especially UTI since this is where there is the highest bacterial resistance.
It is scary, that is or sure. Just wanted to share with you. Hope what ever you do dedcide to do, I hope you get better.
Jen

[malone]

Hi--I am not sure but it seems like (and if I am wrong please forgive me) some people think the broth culture is kind of a scam. Some think that it always shows some sort of bacteria. I had it done through**** (did the *'s myself!!!!) and it came back negative, zero, zip. I have recently had some regular cultures come back positive. I personally think it is a really reliable test and wish more research was being done on biofilms and the whole theory of infection and IC. Many thanks to all who post here. I think it is really an important avenue to explore. Ginny

[Angeles]

I dind't read this looong thread but I always wondered: If you send a normal urine for broth culture i.e, your roomate's, you cousin's your cat's, whomever, would it also come back with a bacteria result in it??? If I had the money I'd pay for it just to kill my curiosity.

I hope is not a scam and it is actually somehting for the benefit of the patients....I hope I hope.

[amaranthe]

I dind't read this looong thread but I always wondered: If you send a normal urine for broth culture i.e, your roomate's, you cousin's your cat's, whomever, would it also come back with a bacteria result in it??? If I had the money I'd pay for it just to kill my curiosity.

I hope is not a scam and it is actually somehting for the benefit of the patients....I hope I hope.

I havent had it done yet, but plan to at some point. However, I know lots of ppl here that have had it done. Some had bacteria and some didnt. The ones that did that I know, followed up with their own Drs. and were r/xed abx and got better. So, I dont think it is any kind of scam. When I do have one done, I will post the results of mine. If there is anything that requires treatment, I will post the results of that as well. Hopefully, others that do it will do the same.

[Calliegrl03]

Thanks for the info, Martha. I'm in the DC area, so I can get into Mclean easily. I will probably go the center early next week. This may be the answer to my prayers!

HOLLER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!