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Positive Broth - Infection Noticeable in Blood?

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  • Brenda01
    replied
    Boukie,
    I would like to e-mail you, I have some infor I received I want to give to you. What are your symptoms? Did you send in your culture from a catheter and overnight it? How long did she say you would need to be on the antib? I'm so tired of the pain! My e-mail is [email protected]. If you e-mail me direct I can get back to you directly. Did Ruth tell you that she had mostly success with her patients? I wish there were some to talk to that she had treated, ya know? Do you live in her vicinity or something?

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  • boukie
    replied
    treatment

    We will start the antibiotics within the next couple of wks. We are getting the cd 57 test, which will determine whether or not we need to do the lyme disease test. Strep B is usually a layered bacteria, which means once you take anit, the first layer will be gone, but yet the next layer usually is strep d. We met w/ Ruth and she is very helpful. I would do the broth culture it wont hurt anything.

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  • boukie
    replied
    broth

    We have not done the antibiotic treatment yet. Yes we both did the broth and thats how we found out we had bacteria. If we have not done the broth we would of never known. Anyways, we meet w/ Ruth on frid. I will let you know how that goes.

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  • Brenda01
    replied
    Boukie,
    I was how you and your twin are feeling now? Did you or are you guys doing the antibiotic treatmen? I am so confused on this and am not sure what to believe since they don't know what causes this. Did you find this by way of the broth culture?
    thanks,
    Brenda

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  • ICNDonna
    replied
    You could ask your urologist to do a repeat culture.

    Donna

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  • boukie
    replied
    Hi Martha,
    My culture came back w/ ecoli and strep B. My twin came back w/ ecoli and strep D. Our urologist lied to us. I'm ****** angry upset and very emotional. I feel like there is no Dr. that wants to help us. My uro doesn't understand that I need a long term antibiotic treatment. Any suggestions from anyone out there.

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  • boukie
    replied
    I'm very upset, my broth came back w/ ecoli, but my urologist says a broth isn't accurate. That's BS! I know ecoli can invade the bladder lining, duh! Why don't dr's give you what you need. A wk. of macrobid will not conquer all of the ecoi. I am looking for a new urologsit in the los angeles area. Any help please!

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  • MarthaF
    replied
    Bacteria isolated by good culturing

    The connection with bacteria to chronic bladder symptoms has long been debated. All of the research I have seen (and sponsored) has shown Enterococcus to be the most common via broth culturing and molecular testing (PCR). Unfortunately the commonly used agar plate does not always find it since it is slower to grow and there are often fewer colonies that don't meet the criteria arbitrarily set to define infection. UTIs are the only infectious disease I know of where a "colony count" is used.

    Yes, many have bacteria without symptoms but that is true in other diseases such as stomach ulcers. I have read as many as 30% of the population has H. pylori in their stomach but one 20% of these develops an ulcer. There are other factors that determine whether an active infection will develop.

    Many say they notice improvement on antibiotics and the one study done testing their use showed 48% improved, and that was without knowing what bacteria might be present. A culture can show definitively what bacteria are there and which antibiotics will be effective.

    Here is the abstract from a study done in Canada. Gregor Reid, PhD, one of the inventors of FemDophilus, is an author of this study. It shows Enterococcus to be the second most prevalent of UTI pathogens isolated in a suburban population studied:
    --------------------------------------------------------------------------

    Department of Microbiology and Immunology, The University of Western Ontario.

    Urinary tract infections (UTI) are a common reason for patient visits to the family physician. The following study was carried out during one month in 1989 and one month in 1996, whereby urine specimens from adult females (living in suburban areas of Toronto, Canada), with presumed signs and symptoms of UTI, were processed. The pool of 20 infecting uropathogenic species was relatively unaltered over the seven years. Most isolates were Gram negative pathogens (72% in 1989; 76% in 1996), with Escherichia coli the most common (56.5% in 1989; 61.9%, in 1996), followed by Enterococcus faecalis (17.4% in 1989; 9.47% in 1996).

    PMID: 12735807 [PubMed - as supplied by publisher]
    --------------------------------------------------------------------------

    I recently found an abstract of new research on "Viable but Non-culturable" bacteria done in Italy. Although the abstract doesn't state this they used an isolate from a patient with a UTI according to the complete article. It turned out to be Enterococcus faecalis. Bacteria are able to go into a state called VBNC when they are stressed or in an unfriendly environment. Inflammation would be one condition that is unfavorable. They are hard to culture in this state, but it is still possible for them to resuscitate and infect. The researchers did find some antibiotics that could prevent resuscitation. There is still much research to be done on bacteria in the urinary tract but slowly but surely the data is mounting.

    For those who are interested here is the site. I purchased the whole article since it is new and exciting research:

    http://www.blackwell-synergy.com/lin...0.2007.01345.x

    I know this scientific jargon isn't for everybody but unfortunately we have to do much of our own reading and searching to find answers. I think the doctors would be happy to have an explanation for symptoms and it is really just a matter of good lab work in order to find hard-to-isolate bacteria.

    Martha

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  • CathyKi
    replied
    Looking for a cause

    I have noticed that most of the people on this site have cats and dogs. Maybe we picked up a microorganism from the cats or one of their flees. We should send our lab work to our local vet and see what he comes up with. Cheaper than the doctors office and they would be looking for different bacterias. I'll pass on the chewy treat though. Just kidding!!
    Cathy

    Itching like mad with a possisble yeast infection or could be something new.

    Leave a comment:


  • soccermom32
    replied
    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!!

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  • MarthaF
    replied
    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...97&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

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  • Moonheart
    replied
    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.

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  • lan
    replied
    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

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  • MarthaF
    replied
    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

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  • kelly24
    replied
    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...
    Last edited by ICNDonna; 04-14-2007, 05:03 AM.

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