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