Sending My Culture To Dr. F.

[Portia17]

I will be sending my urine culture to Virginia tomorrow fedex overnight so that the lab where Dr. Fugazzotto works can do the broth test that will be tested for 5 days for bacteria

What a shame our own doctors will not do this for us.

If they find bacteria I will get a copy and start antibiotic treatment.

Then I will see if my symptoms start going away

[liznazz]

I've been curious about this too. Could you please post and let us know what happens? Thanks. liz

[Katrina]

Great to hear Mary! Please tell us how it goes. What it easy to get Dr F to accept a sample? I certainly hope he can help you!!!!!!! God Bless!!!!!!

:grouphug::grouphug:

[Portia17]

Hi

Yes thanks to Martha who is a registered user on these boards. She was reading my posts and recommended this idea.

So, she gave me the number to Virginia and I called. It costs 129.00 but if you send a copy of your insurance card you get reimbursed.

So I am doing my urine sample tomorrow (there are some easy procedures you have to do first) and then off it goes. It will be cultured for 5 days and then I will know after that.

I also hooked up with a nurse over there who will help me if culture comes back positive

I will let you all know

I FORGOT TO MENTION IT IS DR. CHANGE WHO WILL BE DOING IT AS HE FOLLOWS DR. F'S THEORY. DR F IS NOW 92 YEARS OLD AND HE IS STILL AT THE LAB TIME TO TIME

If you want the number to the Virginia Lab just let me know

[yorkiemom]

Where did you send your specimen? Virginia? Do you mean United Lab? Dr. F. who lives in S. Dakota, is in the hospital so he can't do cultures right now. Yes, it's easy to send a specimen yourself to United. I've sent specimens to both Dr. F. and United.

[Portia17]

Sending it to United

What was your outcome after your test?

Thanks

[yorkiemom]

Whoops. Should have read the other thread about broth cultures and Dr. F and United before I posted on this one. Yikes! Both United and Dr. F. found enterococcus as well as gram negative bacteria.

[Portia17]

Yorkiemom

Once they found it, DID THEY GIVE YOU ANTIBIOTICS and DID YOU FEEL BETTER?

tJANKS

[yorkiemom]

It's a long story (isn't everything?). I got the antibiotics from my family doctor and had to try 3 different ones before finding one I could tolerate. I quit taking them after a few months but probably will be trying the antibiotic regiment again in the very near future as I can feel my infection has returned. I probably didn't take them long enough to keep the infection away for good.

[Portia17]

hi yorkiemom

I understand that. After all the antibiotics that you took, was all of your I.C. better then.

[yorkiemom]

No. I probably wasn't on them long enough the first time around which is why I'm considering getting back on them. Am sending you email with more info. Good luck.

[MarthaF]

Thought I would add to the discussion. Unfortunately, Dr. F. (who lives in South Dakota and is not associated with United Medical Lab) is currently in the hospital. We don't know when, if ever, he will be able to work again. However, United Medical Lab in McLean, VA, has been doing broth cultures for 15 years and is very reliable. You can call and get instructions, and the information is on Dr. F.'s website, the Cystitis Research Center. Dr. F. pioneered the use of the broth culture for chronic urinary tract symptoms and was finding pathogenic bacteria in 80% of the patients who sent specimens. Our research here at a university medical college is also finding that result.

Almost all labs today do a 24-hour agar plate test which is not always capable of finding slow-growing species of bacteria. Sometimes it takes 3 days or more to grow and a special culture. Labs do not want to spend that much time and the doctors do not order better cultures. Our challenge today, as chronic patients suffering for years from symptoms that appear to be similar to infection, is to insist that better culturing needs to be done. Our testing was done with a PCR (molecular machine) test and it is not available in community labs today, but it does show that all bacteria is not being isolated in the usual testing done. But a broth culture is certainly a valid test and is available. We hope to get more labs to do this test and convince doctors that they should insist on better tests for chronic sufferers.

As to antibiotic treatment, many have responded and are well. There are many success stories. Although I am not allowed to put the site of the stories on the ICN, you can search on 'IC success' and find it. It is worth of trial of the right antibiotic which the United test report will show (a list of several that the bacteria is sensitive to) and then a practitioner has to prescribe.
Number for United: 703-356-4422

We owe much to Dr. Fugazzotto for pioneering this test and we intend to continue to research why some are susceptible to certain species of bacteria which are in the bladders of many. Something triggers an active infection. We don't know what but it could be hormonal levels, trauma like an operation, childbirth, previous UTIs, immune system, catheters, birth control methods, etc. We now have a Canadian microbiologist working with us to see if the bacteria enter the cells of the epithelium.

Martha Foster, Patient Advocate and Research Sponsor

[diane57]

Martha, thanks so much for posting this information! It's fascinating.

[PamIvanicki]

Is there no place in California that will do these broth tests? I can't believe that!

[Portia17]

Well I live in Florida and I am sending to to Virginia via fedex.

There is a Doctor Toth in California that you can send it to as well. Either way you dont go there u mail your speciman fedex or whatever overnight

Dr. Toth tel number is 925-687-9481

[PamIvanicki]

Thank you. I guess I sounded kinda snotty in my last post. I don't mean to, but this is just so frustrating. I thought I was getting my symptoms under control, and have been having flares off and on for a week for no reason I can think of. Thank God for pyridium. I eat practically the same thing every day. (boring) and take the same meds and supps. I just want to be normal again. My gyno is operating to remove some cysts soon, and I hope that is causing my symptoms. Thanks for the information on Dr. Toth. Sorry if I came off as snotty.

[MarthaF]

Dr. John Toth in Concord was trained by Dr. Fugazzotto and said that he would culture and treat patients. The telephone no. I have is 925-682-5660. Please let me know if that is not correct.

Martha

[Portia17]

Hi

The number I gave on prior post for Dr Toth was off of my caller i.d. on my phone but Martha maybe has a 2nd number as well

[Portia17]

Hi my friend Martha:

I phoned Dr. Toth after I spoke to Dr. Chang in Virginia from United Lab.

Dr. Toth called me back I think it was yesterday and they were going to send me a kit so I could sent my urine sample. I said thank you very much but I had everything prepared for Virginia but I told them if it did not work out I would phone them.

The number on my caller i.d. for Dr. Toth was 925-687-9481

Hope it is okay

[PamIvanicki]

925 687-9481 is the correct number for Dr. Toth. I called yesterday and spoke to a very nice lady who explained the whole procedure. I'm considering doing this. Thank you all for the information.

[Portia17]

Hi Pam

Way to go! Glad you clarifed the number. I just sent mine to Lab in Virginia today so will let you know.

Hope it goes well for you if you decide to do it

Hugs

[PamIvanicki]

Good luck to you too. Thanks for the support. What a great bunch of women I have met on this site!

[Portia17]

Hi Pam

You are welcome and thanks for your help as well.

[massagedoula]

Please let us know what they find...I am thinking about sending my urine off too, but I am hesitant b/c of the cost. Do you know how much Dr. Toth charges?

[Portia17]

massagedoula

Briefly, Dr. Toth told me it was 129.00 for the test. That is the exact same price for the one I mailed to United labs today. United said to give them a copy of my insurance card so I did as there is a good change I will get reimbursed.

Then they said another cost after that for about 95.00 that might be for the treatment but dont quote me on that

I would call them if I were you so u can know what is going on

Good luck

[massagedoula]

I called united labs today. The man who answered the phone had such a strong accent that I seriously couldn't understand a word he said. I tried to ask for the address, and he gave it to me like 3 times and I still don't think I got it. I normally am good with accents (my husband has one) but with this guy it was too hard. Does he always answer the phone?

[Portia17]

massagedoula

I am sending you a private message now with the address and things for you to do

Mary

[PamIvanicki]

Dr. Toth charges $129 to do the culture. Should it come back positive, it's another $95 for him to send treatment recommendations to your doctor.

[Katrina]

Thanks for the info Mary and Pam!

[MarthaF]

Just wanted to clarify some information:

Dr. Fugazzotto has been ill and although he is recovering he will no longer be doing broth cultures. He has served many patients well and now is going to retire.

United Medical Lab in McLean, VA has been doing broth cultures for 15 years. They can be reached at 703-356-4422. They plan to have a website available by the end of May which will help patients get the necessary information. Their address is:
6720 Old McLean Village Drive, McLean, VA 22101

Dr. John Toth of Concord, CA is now doing broth cultures and can treat patients. You can reach his office at this number: 925-687-9447.

There is ongoing research into the connection of bacteria and IC symptoms. We already know that more IC patients have a species of bacteria, Enterococcus, than do controls. This has been confirmed by use of a PCR (molecular machine) test during an approved research study. We know from patient reports that many respond to the right antibiotic. The research will focus on why this particular strain could cause symptoms in order to convince practitioners of the need to treat it.

Hope this helps those interested in a broth culture.

Martha

[Katrina]

Thanks a bunch Martha!

[redizhere]

I sent my culture a few years back to Dr F and he found enterococuss and I did the antibiotics and they made me burn soo much worse so had to stop...it didn't seem to work for me:( xoxo Darlene aka Red

[Katrina]

Really Sorry Darlene, at least you tried and searched for help. Hopefully you find what works for you. Hopefully someday we can at least have a test that sends us in the right direction of what treatments would most likely work for us. ((hugs))

[mela414]

what is the phone number to the lab that dr Fugazzatto belongs to . I would like to send a sample there. It's worth a try.
I hate the thought of long term antibiotics and yeast infections...but can't take this pain anymore.
thanks,

[massagedoula]

Do they always find Enterococcus do do they sometimes find other things? Because if they always found Enterococcus in every sample, which it seems like from the stories, that seems very odd....I tried to send a sample to Dr Toth but the postal service would not take the package, they said that the urine sample should be in a biohazard package, which my doc should give me. I called back Dr. Toth's office and they were kinda rude to me and said that they don't give anything like that out. So I never did it. Maybe I will try FedEX and United Medical if I want to go at it again. But I still am kind of suspicious about the whole Enterococcus thing. Even though I feel strongly like my IC has an infective component to it, it seems odd that they seem to always find the same organism. But manybe I am under a misconception? Please respond if you know anything about this.

[MarthaF]

I understand your concern about the finding of Enterococcus in asymptomatic specimens. I have been sponsoring research here in VA into the bacterial connection. It has been slow since the researcher is working on this on her own time (she is a molecular neurobiologist). I recruited IC-diagnosed patients and controls and they have cultured by broth and the PCR (molecular machine). We are not finished but the PCR which is the most reliable test showed 80% of patients and 40-50% of controls are positive. It is not uncommon in infectious diseases for people to have the bacteria without symptoms. Stomach ulcers are caused by H. pylori, yet 30% of the population has H. pylori in their stomach but only a percentage develops an ulcer. It took years to convince the mainstream that ulcers are caused by bacteria.

We are continuing the study and now a microbiologist is going to examine the patient specimens to see if the bacteria invades the cells. Since many respond to antibiotics it would not hurt to have your urine tested and if positive give them a try. United is very reliable and you can call them for instructions for sending a specimen. They will do a broth culture and send the results with antibiotic sensitivity test results to you and/or your practitioner. (703-356-4422) If you package it well you should be able to send it through the mail.

Martha F

[massagedoula]

I think that your explanation makes sense and I think that it is worth a try. Does United give any treatment recommendations or just the results and then it is up to my doctor? Also, if I am allergic to penicillin, should I let them know in a letter so they can use other antibiotics for the sensitivity test? I called FedEx and they also say that I need special packaging. I have to find out where to get it.
-Emily

[MarthaF]

No, United will not give any treatment recommendations. That is why I recommend talking to Ruth ****, NP, and former patient. She just set up a practice in DC and is beginning to treat many patients. She can advise dosing of antibiotics, other body systems that may need testing, etc. She can prescribe, and has been a patient herself so knows the ins and outs. Has been well for 15 years.

I would tell United about the allergy but they use many antibiotics when doing the testing and usually there are several that can be used.

Martha F

[MakinIT]

Hi all: I used to belong to another IC website. I stopped visiting it because they became fixated on this broth culture approach to curing IC. What I really like about this site is it's diversity and many places to put opinions. (as opposed to where I was) This other site, I joined it shortly after I found out I had IC and I was desperate for SOMETHING b/c it was pretty obvious I had a severe case. Besides the fact that they were really into very strange stuff to eat (and Idon't just mean stuff on the the IC diet) almost everyone had sent in a culture to Dr. F and got a treatment plan back. I was all ready to try this except for a couple of things. 1.) the cost. pretty simple....I was damn broke. 2.) Folks who got their treatment plans and went to their docs were laughed out of the door b/c either the doc wouldn't read it or he/she read it and said there was no scientific basis in prescribing the medication 3.) those that did get their docs to try wound up sick, with burning sensations in thier belly and bladder that didn't go away.

Now, in a year, they may have perfected the technique. I hope so b/c it sounded so great. And, again, I don't want to rain on your parade. I just want you to do some research.

Good Luck....MakinIT

[ICNDonna]

I agree with MakinIT --- there is a down side to long term antibiotic therapy. I have a friend who has developed an antibiotic resistant infectious condition caused by taking antibiotics for a lengthy period.

I know some people feel they have been significantly helped and each of us must make a personal decision, but the risks must also be considered along with the possibility it might help.

Donna

[massagedoula]

I just want to clarify...I don't plan to take long term antibiotic therapy. I just want to find out if I have bacteria in my bladder and if so, what type. I feel that getting rid of that bacteria will stop at least some of my bladder irritation. I beleive that I have a low grade infection that is causing my symptoms to be worse, and if it is gone, than I can go back to my "normal" frequency with no pain like I have had all my life.

I plan to take the results of my broth culture to my naturopathic doctor and find some natural treatments for that type of bacteria, or else do a short term course on antibiotics in conjunction with natural treatments.

And....I am always hoping that maybe they will not find anything after all and I can at least rule out yet another piece of the puzzle as to what caused this IC in me.

[mags]

I just want to clarify...I don't plan to take long term antibiotic therapy. I just want to find out if I have bacteria in my bladder and if so, what type. I feel that getting rid of that bacteria will stop at least some of my bladder irritation. I beleive that I have a low grade infection that is causing my symptoms to be worse, and if it is gone, than I can go back to my "normal" frequency with no pain like I have had all my life.

I plan to take the results of my broth culture to my naturopathic doctor and find some natural treatments for that type of bacteria, or else do a short term course on antibiotics in conjunction with natural treatments.

And....I am always hoping that maybe they will not find anything after all and I can at least rule out yet another piece of the puzzle as to what caused this IC in me.

Didn't you try the D****** word alternative medicine? I didn't want to say the word, it seemed to be too controversial. Did that not help you? If you didn't try this, disregard. i was just thinking that you did, and wondering if it helped.

Mags

[massagedoula]

Yes, I took the D-M a n n o s e (i think that we can say it now).

I did get a big improvement, but here is what I feel about that. I believe that I may have had a low-grade bladder infection for a long time (my feelings, not a documented thing). That may have been what caused my IC, a low amount of bacteria slowly damaging my bladder, but without enough symptoms for me (who had no health insurance for many years) to see the doctor about. Then the IC started and the bacteria that was in my bladder was still too low to be called an infection, but it irritated my bladder still.

I took the D-mannose and my symptoms improved but did not go away. I think that now my bladder just does not have the low-grade infection anymore, but the IC remains. I just had another C/S rrecently and for the first time there was no small amounts of bacteria in it. I take the D-mannose as its maintanence dose (1/2 tsp) every day to prevent the bacteria form coming back. However, it is not a cure for IC, because I sure do still have IC, it is just not compounded by any bacterial component any more!

[mags]

Yes, I took the D-M a n n o s e (i think that we can say it now).

I did get a big improvement, but here is what I feel about that. I believe that I may have had a low-grade bladder infection for a long time (my feelings, not a documented thing). That may have been what caused my IC, a low amount of bacteria slowly damaging my bladder, but without enough symptoms for me (who had no health insurance for many years) to see the doctor about. Then the IC started and the bacteria that was in my bladder was still too low to be called an infection, but it irritated my bladder still.

I took the D-mannose and my symptoms improved but did not go away. I think that now my bladder just does not have the low-grade infection anymore, but the IC remains. I just had another C/S rrecently and for the first time there was no small amounts of bacteria in it. I take the D-mannose as its maintanence dose (1/2 tsp) every day to prevent the bacteria form coming back. However, it is not a cure for IC, because I sure do still have IC, it is just not compounded by any bacterial component any more!

If we could just get rid of the ic huh!! I took it too, but i don't think bacteria is my problem, it didn't help me. i wish someone would come up with something that would help all of us!! Wouldn't that be nice!!

[Vampireness]

I read through all the posts but I did not see one person mentioned Dr.John Toth's address.....

That would really be helpful.

What are the other information that needs to be included in the mail for treatment?
So he charges $98 for treatment plan?

And United Medical Lab, does not give any treatment plan? Where would one go if they needed a treatment? Other than their own doctor....cuz I don't think mine knows how to treat the UTI well.

Oh yeah I'm in Singapore btw.

[Vampireness]

D-Mannose, god I thought this was a miracle formula but blah didn't work for me, antibiotics helped alot more better.

[sami4]

I get a lot of relief from D-Mannose as its a coating and is soothing. As for the bacteria unless it is E-Coli D-Mannose may not work on it. The studies on Mannose were done with E-Coli only.
Sammie

[Vampireness]

I get a lot of relief from D-Mannose as its a coating and is soothing. As for the bacteria unless it is E-Coli D-Mannose may not work on it. The studies on Mannose were done with E-Coli only.
Sammie

That is the reason I got D-Mannose because it worked with E-coli and that's what I keep having. But I guess it's not strong enough to kill the bacteria.

[Katrina]

http://www.remedyfind.com/newsletter_archives/Dec_05_InterstitialCystitis.html I couldn't find his address only his phone number...hope that helps.

[Vampireness]

I'm aware of his phone number but I actually needed the address but it's alright thank you. I'm alittle confused on what to do about the broth culture. When I read Ruth ****'s story, I see that she had done the culture couple of times (saw the part where she said four months later) So I doubt they keep specimen that long. So I see many here that give up sending after one time, so does that mean they should keep trying?

Agar culture is done 3 days or so and what about the broth culture, how long does that take?

[Vampireness]

What do I actually write on the item description? lol

What kinda box should I use etc.

Need help....

[mariadee]

Hello everybody! I just sent a broth culture to Dr. Toth. It takes 5 days for the culture to do it's thing. If they find something I have given them written permission to charge my card for 95 bucks more to give me a list of recommended treatments. I have very mild IC - no history of anything really. Right now I have slight urgency and frequency but my doc says it's IC so I'm suspecting there is a culprit in there messing with my bladder. It's worth a shot. He also does phone consultations and office visits for 95(?) dollars per 15 minutes. I have had my symptoms for only 6 weeks and I am sure glad that there is this forum to turn to.....

[moemullah]

hello mariadee . you said you have mild urgency and frequency. hat is consider mild uregency and frequency. i was told i have mild ic but i have no frequency i go 4 times a day and can hold my urine as much as i want but i always have a constant sense to urinate which is worst after i empty my bladder. is thsi constant sensation considered mild urgency.

[mariadee]

I urinate about 12-14 times a day. it's worse in the morning - meaning if I drink i have to go in about 5 to 15 minutes. During the day it's not as demanding just a slight pressure that I ignore. At night it can get worse or better depending on what I ate during the day. 95% of the time I feel slight pressure or "urgency" to urinate but it's tolerable. Yoga helps tremendously to alleviate the pressure. The doc says I have mild IC and that stress reduction is one of the key elements in keeping it from progressing along with low acidity diet.

[Vampireness]

I urinate about 12-14 times a day. it's worse in the morning - meaning if I drink i have to go in about 5 to 15 minutes. During the day it's not as demanding just a slight pressure that I ignore. At night it can get worse or better depending on what I ate during the day. 95% of the time I feel slight pressure or "urgency" to urinate but it's tolerable. Yoga helps tremendously to alleviate the pressure. The doc says I have mild IC and that stress reduction is one of the key elements in keeping it from progressing along with low acidity diet.

God luck with the culture. Its good that you found the site while your symptoms are not bothering you too much and it just started. I hope you find an answer to this siutation REAL SOON!

I am sending my specimen to United instead and have yet to collect pee LOL. If I hold pee in I get really bad pain...soo...that sucks! And the whole day I pee so much more.

[Vampireness]

hello mariadee . you said you have mild urgency and frequency. hat is consider mild uregency and frequency. i was told i have mild ic but i have no frequency i go 4 times a day and can hold my urine as much as i want but i always have a constant sense to urinate which is worst after i empty my bladder. is thsi constant sensation considered mild urgency.

Well it's mild because you go 4 times a day and can hold it. You don't leak do you? There are others who go ALOTS of time up to 30 - 60 times a day, so thats severe. If you are unable to hold and have to rush to the restroom or you will leak, thats severe urgency. But it's not looked at that way. As in, IC has it's stages but not really the symptoms. Get it? lol

[Vampireness]

Hello everybody! I just sent a broth culture to Dr. Toth. It takes 5 days for the culture to do it's thing. If they find something I have given them written permission to charge my card for 95 bucks more to give me a list of recommended treatments. I have very mild IC - no history of anything really. Right now I have slight urgency and frequency but my doc says it's IC so I'm suspecting there is a culprit in there messing with my bladder. It's worth a shot. He also does phone consultations and office visits for 95(?) dollars per 15 minutes. I have had my symptoms for only 6 weeks and I am sure glad that there is this forum to turn to.....

mariadee - Can you share with us Dr.John Toth's address? Thank you.

[purpleviolet]

I urinate about 12-14 times a day. it's worse in the morning - meaning if I drink i have to go in about 5 to 15 minutes. During the day it's not as demanding just a slight pressure that I ignore. At night it can get worse or better depending on what I ate during the day. 95% of the time I feel slight pressure or "urgency" to urinate but it's tolerable. Yoga helps tremendously to alleviate the pressure. The doc says I have mild IC and that stress reduction is one of the key elements in keeping it from progressing along with low acidity diet.

Mariadee - I'm looking at the part about the yoga relieving the pressure. I think you are doing the right thing sending in a sample, but if it was an infection I bet it would burn more and not be just pressure. However, u do need to eliminate the infection thing. The yoga part sounds like you could really benefit from pelvic floor therapy if an infection doesn't show. PV

[mariadee]

I don't have is address at the moment. I should be getting a report soon from him and when I do I can post his address. It's on Bacon Street in Concord, CA. I remember that much cause I laughed when I saw 'Bacon Street".

[mariadee]

Sorry ya'll if I answer in the wrong order - I'm a first time "forumer". Anyways, I made an appt with a recommended urologist so that I can have some formal testing on my bladder and pelvic floor. He's a gynecologist with a specialty in female urology. Bad news is that I can't get in until September 27th! I said to the recptionist "heck they might find a cure by then!" LOL I want it confirmed that it's IC or PFD (hopefully not both). I have a feeling that it could be PFD but I want some answers ya know! Anyways, I have been investigating and found a great therapist in my area that works on PFD so thanks for your insight!

[Vampireness]

Welcome to foruming LOL.

LMAOOOOOOOOOOOOOOOOOO @ you laughing at Bacon Street LOL I didn't laugh up till you emphasized it LOLOLOL

How did you send your urine off for culturing if you dont know the address?? lol

Ok that would be helpful to those who wanna send to CA if the address is posted, thank you.

September 27th?? Holy ****, thats too far away!!! LMAO@having a cure by then!!!

Maybe you can ask them to let you in sooner, talk to the doctor/nurse or somethin. Or maybe this broth will give you an answer?

Good luck!!!

[boukie]

my broth culture came back w/ e coli same w/ my twin sister. my urologist does'nt believe in a broth culture so he's only giving me a wk .supply of antibiotics. E coli has made a home in my bladder lining, and I feel thats what has caused ic. Did antibiotics work for you?

[ICNDonna]

This is a very old, old thread. I will be closing it.

Donna