Sending My Culture To Dr. F. - Interstitial Cystitis Network Support Forum

Portia17 · 04-25-2005, 09:39 AM

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 · 04-25-2005, 10:44 AM

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

***Katrina*** · 04-25-2005, 10:56 AM

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!!!!!!

Portia17 · 04-25-2005, 11:18 AM

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 · 04-25-2005, 11:19 AM

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 · 04-25-2005, 11:22 AM

Sending it to United

What was your outcome after your test?

Thanks

yorkiemom · 04-25-2005, 11:28 AM

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 · 04-25-2005, 11:35 AM

Yorkiemom

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

tJANKS

yorkiemom · 04-25-2005, 11:56 AM

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 · 04-25-2005, 12:02 PM

hi yorkiemom

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

yorkiemom · 04-25-2005, 12:10 PM

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 · 04-26-2005, 03:33 AM

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 · 04-26-2005, 08:25 AM

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

PamIvanicki · 04-26-2005, 10:35 AM

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

Portia17 · 04-26-2005, 11:08 AM

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