Positive Broth - Infection Noticeable in Blood?

[futurehope]

I was reading some threads on the antibiotic forum and learned about the broth culture done by United Medical in Mclean VA. They do a longer/different culture than other labs and tend to find bacteria in the urine that other labs don't.

Why doesn't a supposed long-standing infection in our body show up on a CBC as elevated white blood cells (the hallmark of infection?)

Is that true also of a bladder infection or lyme disease? Do they also NOT affect the white blood cell count even though they are infections?

I truly believe that this lab in VA is culturing something, but I'm a bit skeptical as to the origin of the bacteria they are culturing. In other words, maybe bits of bacteria are picked up inadvertantly in any portion of the testing protocol, and the test comes up positive?!

Any opinions, ideas? Thanks.

Any insight on this?

[soccermom32]

There is a board somewhere on here that discusses the broth culture, I think its "alternative treatment" or " antibiotic therapy ".

I have mixed feelings about it. I think if it was the answer to IC, I think ALOT more places would be doing it, not just 1 place in the US!!!!! I think doctors would demand it. I also question the validity simply b/c the urine has to be mailed if you don't live there. You would also think if you had such a HIGH level of bacteria to make your body feel miserable, it would be detectable on a normal culture or bloodwork.

My confusion is this: I've been on 1000mg of Ceftin for 10 days and I have NO IC symptoms. This happens EVERYTIME I go on antibiotics. What's up with that if IC isn't bacterial????

[futurehope]

Soccermom

Same with me. Antibiotics, according to members on this forum, do have anti-inflammatory properties. For me, the antibiotics are terrific, but sometimes the burning comes back. So, maybe, the anti-inflammatory property lasts only so long, and my normal "abnormal" process then returns?

I sure wish I could just go on the antibiotics and get the burning to stop - which it does. But I have to remind myself that the effect does not last. Not to mention, staying on antibiotics for longer than necessary could create resistant superbugs.

[jen74]

I have done alot of research on IC and also rea about the broth culture being able to pick up bacteria that a ordinary culture wont.
I think that IC may be bacteria related. I mean, why else would the bladder react this way. I could be wrong though. I mean it could also be somewhat autoimmune related also.
As far as why not many doctors will do the broth culture or look into it, I dont think they want to find a cure. Think about it, how will they make money. They wont be able to push these instilations which a VERY costly. I just cant believe they cannot come up with something for this disease after this many years.
I also found that I felt better while taking macrobid. My pain was somewhat less. I do think there could be a connection between bacteria being a possible cause for IC. I remember someone replying to me that she gets the chills and fever because of her IC. That tells me that likely there may be a hidden bacteria that is causing all this. Anything is possible.
Jen

[futurehope]

Jen74

Wow. I can tell you do not trust some doctors' motives.

Just keep in mind that if someone does exhibit a fever and chills, those symptoms sometimes accompany an infection and the person exhibiting them should be checked for one. That seems obvious.

As to doctors wanting to make money. I would say that anyone who spends time at any kind of job wants to make money and I do not blame them at all for that. Keep in mind that doctors take the Hippocratic oath stating they are to help patients, not harm them. If they harm patients deliberately, they can be reported and stripped of their medical licenses.

Also, keep in mind, there are currently doctors at the U. of Maryland hospital here in Baltimore who are researching IC. Why would they have funding for their research if they already knew that antibiotics would help? What a waste of time and money;their entire career would be a sham.

That being said, I understand your frustration. I, too, wish I could just stay on abx and be fine. One of my uros let me stay on a low dose for a while. It helped some, but then lost its effectiveness.

[ICNDonna]

I do have some concern about sending a urine culture in the mail to another state, largely because normal healthy urine can contain small amounts of bacteria, which is almost never a problem. Plus the urine must travel down the urethra into a container (more potential for bacteria), then travel via the mail system, where controlled temperatures are not the usual. There are some people who feel just as strongly that they are accurate, so I will say this is absolutely my own opinion and is not backed by taking cultures.

And yes, antibiotics do have anti-inflammatory qualities. I'm thankful for that since if I have an infection it's very nice to feel better fairly quickly. I have developed allergies to some antibiotics so I'm cautious about taking them unless I have a verified infection.

Lastly,

The individual who actually started the ICA and has done a great deal for all of us with IC, is a doctor --- who developed IC while she was either in Medical School or in her residency. If doctors were purposely not curing IC, there certainly wouldn't be doctors (or members of their families) with IC.

Donna

[jen74]

Hi.
I was the one who said that doctors dont want to cure IC. I guess I stated that wrong. What I meant was, that it seems like so many doctors dont seem to care about the pain we are in and dont seem to be interested in finding a cure. I had one doctor actually tell me I should be happy that I have IC and not cancer. I mean dont get me wrong, I am thankful I do not have cancer, but living with IC is not easy at all. Some of these doctors should try living in our shoes for a while.

Jen

[ICLori]

Jen, I totally understand your sense of frustration. And, some doctors really don't seem to care about us, you are right. I've run into a doctor or two like that, and I've heard stories of others.

But I've noticed a lot of my doctors seem just as frustrated and feel just as helpless as I do. They are eager to find out new research, and they hope that it will help their IC patients.

The big problem has been that in the past, prior to the mid 1980's, the medical science establishment as a whole took a wrong turn when they pronounced IC a psychosomatic disease. One psychologist researcher submitted a paper theorizing one case study where he said he thought IC was a way to express unconscious hatreds. So because of that one study published in the 1950's, for thirty years doctors ignored IC and researchers ignored IC and women got sent to psychiatrists instead of there being funding for research.

So now, especially since about 1990 largely due to the efforts of Dr. Ratner (Donna talked about her, the founder of ICA who has IC herself) the medical establishment is saying IC is a real disease, and money has just been pouring in for research. Unbelievable amounts of money, we are talking well over 100 million dollars here! Sometimes I look up articles on medscape etc. and I'm floored by how many new articles there are compared to when I was first diagnosed with the disease in 2000. So I've seen some real progress being made. The discovery of the APF (antiproliferative factor) was especially exciting and I hope it might hold the key to a good effective remedy for IC.

The hard part is, we don't have a cure just yet, and the remedies we have at present don't work 100% of the time for everyone. So it can be extremely frustrating for doctors and of course even more so for patients. I think a lot of the doctors actually feel like failures because they can't "fix" us. I think sometimes they get angry at us but it's really just because they are angry at being helpless against the disease.

I had an appointment today with a new doctor and he said that IC was the least fun disease out there to treat because it was so frustrating, and doctors hate diseases where they feel they can't help their patients.

I guess it would be kind of like as if we had a job, and we had to keep doing this job even though it was set up so that we failed every time. We'd be feeling pretty down by the end of the day with a job like that, we humans don't like losing very much.

I do agree it's extremely frustrating, and many times doctors don't seem to understand how hard it is to live with this disease because they have never felt cystitis before. But I do think there are researchers now trying very hard to help us, trying to make up for lost time, so please don't give up hope. I think things will get better, I think an amazing new remedy or maybe someday a cure will be just around the corner.

Blessings,
Lori

[PickPink]

Unfortunitely, IC baffles many people in the medical field. I know that many people who have been DXed with IC are baffled by it. Every person seems to feel something different, and there isn't a single treatment out there that has helped treat every patient of IC. Antibotics may make some people feel better, but that is definitely not wide spread. You have to keep in mind also, that only 20 years ago or so was IC finally recognized as an actual disease. And research doesn't take years to develop and test and confirm, it takes decades. I do wish that more doctors were educated about IC and all the different treatments available, and I'm sure that one day they will be, but for now we just have to search around for a doctor who will treat us fairly and with respect. I know that one day there will be a medicine or treatment available to (hopefully) cure IC altogether.. or at least treat the symptoms in their entirey. In the mean time, it's great to know that we can come here and vent to our fellow ICers about how terrible ours IC days are, and support each other through the daily struggles. X 20!!

[kelly24]

but what about antibiotics...

Going back to the first post in this thread, I have felt in my gut (quite literally) ever since the beginning of this horrible disease, that it is bacterial in origin. I am not saying that for everyone with IC, but for myself I have felt that by nature it has to be an infection that someone can't pinpoint.

I too am skeptical of sending a urine culture to another state etc...but I am also incredibly frustrated with only being treated for my symptoms, as opposed to the root cause of the disease. There has to be a root cause, even if it is different for everyone...

[MarthaF]

IC as a bacterial infection

Many of you know that I am a proponent of the theory that chronic bladder symptoms diagnosed as IC are due to a bacterial infection that has not been found. I was found to have Enterococcus and was successfully treated with the right antibiotic. I have sponsored research into this connection since apparently the mainstream has ruled this out as a cause. The one study done to test this approach was done at the U of MD and published in the Journal of Urology in June, 2000. They recruited 50 patients and treated half with antibiotics (6 different ones for 3 weeks each) and half with a placebo. They found 48% of the treatment group improved and 24% of the placebo group and they did not think that represented a major advance in IC treatment. As we know in the case of Elmiron, the newest drug to be approved, testing showed 19-38% improve. In comparison 48% sounds pretty good, and those of us who are familiar with antibiotic treatment know you must use the right antibiotic for the pathogen and use it for several months to see significant improvement. We believe the bacteria are either intracellular or in a biofilm which makes it hard to find and and hard to treat.

Some species of bacteria are very difficult to grow and the broth uses a nutrient to encourage the growth. Also the culture is allowed to grow for a week whereas the typical lab culture using an agar plate only allows 24-48 hours. The agar plate has been in use for over 50 years and it is time for newer, better testing. UCLA has developed a high tech testing method that can find many different species:

http://jcm.asm.org/cgi/content/abstract/44/2/561

They realize the present testing does not find all pathogens. The level of testing is less than satisfactory for many pathogens, not just the UTI type. Lyme Disease testing is not adequate and neither is the testing to find such urogenital pathogens as Chlamydia trachomatis and Chalmydia pneumoniae, Ureaplasma and Mycoplasma. Patients are traveling all over the world in order to find answers and better testing. I know of at least 6 scientists, labs or researchers who have found bacteria in the case of chronic bladder patients using either the broth culture or PCR (molecular) testing, but so far United is the only lab that is providing broth cultures for patients. Dr. Attila Toth in NYC is a gynecologist/pathologist who does culturing in his own lab and has found bacteria other labs have not, but it is quite expensive. If you do not want to use the broth culture you could ask you doctor to request that the lab allow the agar plate to grow for a week since some pathogens might appear. And there does not have to be a large number of colonies since even small amounts of some can cause symptoms.

We don't know why some of us are susceptible and there are probably different reasons for different people. Some can tolerate the bacteria while others cannot. We can speculate that it is due to a weakening of the bladder wall, the immune system, a change in hormones, trauma to the pelvic area, a previous UTI, genetics, or the pathogenicity of the certain strains. There is much more research to be done, but it would be a huge help if the mainstream would go back and look at bacteria. Our researcher submitted a proposal to the NIH and it was turned down. It is hard to get funding if you are the new kid on the block. But they have granted millions of dollars to some researchers and we still do not have any explanation as to a cause. No one likes to take antibiotics for long periods but if the testing were better and an infection was diagnosed right away the treatment might be considerably shorter.

Martha F

[lan]

Martha,
Thank you for the information. I have already done some research on the broth culture. It is very hard for me to give up on antibiotics since my symptoms started very suddenly (in Dec 2006) with urgency, freq, and blood in my urine. My uro treated me for a UTI even though my numerous cultures never showed bacterial growth. I tried bactrim for 4 days (got much worse), Macrobid for 7 days (got much better - but still had symptoms), Levaquin for 14 days (got worse). Levaquiun was followed by an "in office" cystoscopy which showed mild inflamation around the urethra so my uro put me on low dose Keflex for 11 days (didn't improve) and then low dose Cipro for 10 days (got worse). Then, as a last resort, he gave me Azithromycin for 5 days, but at the same time he started the Elavil and had me make an appointment with an IC specialist. I was willing to try all of the antibiotics because I wanted to be cured. The specialist said I have IC and he does not support the broth culture. The Elavil makes me feel a little better but how I dream of being my old (pre-Dec06) self again
I get the impression, from what I have read, that even people that are successfully treated with long term antibiotic approach (such as yourself) still have symptoms. You are not cured you just feel a bit better. Is that correct? If people are being cured by this treatment then I just might want to give it a try. Thanks and healing energy to all...lan

[Moonheart]

I think it's really important to realize that the bacteria you are talking about being "found" by the broth cultures are just normal, ever-present bacteria. Everyone has some level of enteroccocus as well as many other bacteria. Enterococcus is a bowel bacteria and so if it is found in your urinary tract, all it usually means is that there has been some level of cross-contamination.

Broth cultures are no more accurate or good at bringing out bacteria they just take longer and so slower growing bacteria that don't show up on a 24-48hr Agar plate tend to show up in the broth.

If something is present in such small numbers or is so difficult to culture that it takes extroardinary measures to culture it, then it most likely is not anything malignant enough to cause any problems.

All bladders and all urine contains some level of bacteria, and sometimes high level of bacteria. It doesn't mean there is an infection. If this is indeed the case, which it is, then it is only logical to deduce that the problem with IC indeed lies with a deficiency in the lining of the bladder itself. Not the bacteria present.

[MarthaF]

Bacteria

You are right that most of us have bacteria - urine is not sterile as many say. But they are finding more and more bacteria in biofilms (Scott Hultgren at WAshington U found them in mice composed of E.coli) which hide from detection but re-emerge to cause another UTI. I have had 5 different kinds of bacteria found via broth and one by agar plate. All responded to the right antibiotic. The antibiotic depends on the species. Most patients in our testing have Enterococcus, a form of Strep, and for most the best AB is Augmentin or Amoxicillin. The uros do not typically use these to treat what they think might be a UTI. The Gram negative bugs like E. coli, Klebsiella and Pseudomonas responded to Cipro in my case, but a sensitivity test will show the right ones. The test I mentioned in the above post being developed at UCLA is designed to find the pathogen in minutes and that would help the uros decide right away which antibiotic.

We don't know whether the bladder wall has been damaged ealier so these bugs are opportunistic and have been there but do not cause a problem until something happens. The researchers are trying to decide whether the bacteria then invade the tissue and are intracellular or in a biofilm. I found a very interesting article about Japanese research showing they found Enterococcus in hospitalized patients that were in biofilms. And within these biofilms they then found other species of bacteria. If that is the case then other species could emerge and cause later infections as I had. It is hard to penetrate a biofilm with antibiotics.

http://escholarship.lib.okayama-u.ac.jp/cgi/viewcontent.cgi?article=1297&context=amo

This article is fascinating for those who are interested. I wrote the researchers about out theory of IC and Enterococcus and they wrote back that "IC is little known in Japan". But I have not seen any research article showing biofilm formation in humans in the US - Hultgren's work was with mice. The researchers here said they would have to have biopsies to determine whether the bacteria are intracellular or in biofilms but the Japanese describes in detail how they found biofilms in urine specimens.

I know many who have had success with antibiotics but they move on and no longer post. I do because I believe we ought to let patients know there is another way, although the mainstream laughs when we say we think it is bacterial. The mainstream did not believe Dr. Barry Marshall, Nobel prize winner, when he said stomach ulcers are caused by H. pylori. We know that approximately 30% of the population has H. pylori in their stomachs but only 20% of these develop an ulcer but we don't know why. And as you know in the early days "IC" was called Hunner's ucler since some do have ulcers in the bladder.

I hope as many of you as are interested will do some good research on the possibility of bacteria. I wish everyone would contact UCLA and ask when this test will be available - it has been posted for two years. Some doctors intuitively believe that it must be bacterial but if their lab does not find it it is hard to know what they are treating and which antibiotics to use. At least United finds the species and does a sensitivity test. There is a nurse practitioner and former patient, **** ****, who is specializing in treating chronic bladder symptoms patients. She can consult by phone and uses United Lab. Her story, although old, is good to read about how she found Dr. Fugazzotto, the retired microbiologist who pioneered the use of the broth culture. She can consult by phone and her number is 202-714-2415. She is located in Fairfax, VA and has an office in DC.

http://www.moonstar.com/~icickay/articles/RKriz295.pdf

The lab is in McLean, VA. She has over 350 patients and has good success. Meg has posted about her experience using Ruth, under the Antibiotic thread. She was later found to have Lyme disease due to Ruth's suspicion since the bladder is often affected in Lyme disease. Usually there are other symptoms of Lyme also that lead to supecting it. A bladder infection, alone, does not cause the other symptoms but but Lyme affects the conditon of the immune system.

We don't know which comes first - a bacterial infection or a damaged bladder wall that allows opportunistic bacteria to infect. They probably do not know in the case of H.plyori either. But if there are symptoms and no other cause can be found and there are bacteria it is probable that bacteria are playing a part and need to be treated. It is short-sighted for researchers today to just dismiss bacteria. They have good tools to find it. The results of our research will be presented by a microbiologist at the American Society of
Microbiology in May in Toronto. The results are based on PCR (molecular testing) and found Enterococcus in a majority of IC-diagnosed patients. They were not looking for other bacteria due to the way the PCR test was designed but it could be designed to find other species. Still we think this is the most common and maybe our findings will spur others to go back and look. OUr researchers will share the PCR testing protocol. Unforutnately no one has developed or marketed a molecular test yet so that it could be used widely in clinical labs.

Hope this helps. I would welcome more people seriously following the trail of a bacterial connection. Even Hultgren's lab researches Enterococcus but they believe it is only found in hospitalized patients and we know that it is out in the community, it just isn't being cultured due to the poor lab work. I know your hesitancy to send a specimen across country but I was desperate enough to send mine to Dr. Fugazzotto in SD after reading Ruth's story which was in the ICA Newsletter in 1991. I believed her and was willing to give it a try. My uro was willing to give me antibiotics based on the the finding of Enterococcus, but to this day I don't think he really believes Dr. Fugazzotto had the answer.

We know we have to get an article published and the researchers are working on this. This research has taken years because we were working on a shoestring and one researcher donated her time but she is a molecular neurobiologist and knew that if bacteria were there she could develop the PCR to find it and she did. She was willing to think outside the box and many researchers apparently have not. They thought Dr. F. was a quack since he was retired and working in his home. But he wanted to help patients and charged us $15 to do a broth culture. He let it grow 2 weeks sometimes in order to find fastidious pathogens. Staph epidermis is the second most common found.

Martha F

[soccermom32]

I was just on 1000mg of Ceftin for 10 days for an upper respiratory infection. Coincidentally, my IC symptoms disappeared.

I stopped the Ceftin and yesterday had a very stressful day which flares my IC and PFD. I had urinary pain and symptoms all day/night yesterday. Was it my bladder flaring, or, my PFD flaring causing my urinary symptoms?

My doctor is keeping an open mind - although I'm not sure what he will do about it yet. He wants me off the antibiotics for 1 month to see where I"m at. He said if the IC symptoms come back, he will consider there is something with my IC and antibiotics. There are so many other things in play its SO hard to figure out what works. I've been in PT, have been consistent with my meds, avoid my main triggers so who know what helps what or what stirs up what. Its all very confusing!!

I find it odd though that on Ceftin my symptoms vanished.

I should mention all my regular cultures are negative. My IC originated though with a high count staph aerous infection in my bladder. It was sensitive to Cipro and Ceftin but came back right after the antibiotics stopped.


I also am praying that I will return to my "normal" pre-Dec 06 self. I am getting close and believe it will happen. I feel TONS better than I did on March 1st when I got diagnosed!!

Good luck!!