Announcement

Collapse
No announcement yet.

Check this out!!!!!!!!

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Check this out!!!!!!!!

    Hello
    Last week I decided to call BOTH of my urologists and demand a "broth culture" test. One of them is supposedly an expert in the IC field. The expert told me that ALL bacteria shows up on a regular urine culture if bacteria is present. He completely dismissed the broth culture and sent me for a regular urine culture which I have done a million times before. The results were negative, of course. I then called my other urologist that I have been seeing for my kidney stones. He order a urine culture and specifically asked for "gram-positive bacteria" testing. This also came back negative. I urged him to give me a order to have a "broth culture". He finally agreed and guess what? It was positive. I have no idea if I should be happy or worried. I have read a lot about bacteria colonizing and I'm worried. Does anyone know how long it takes for bacteria to colonize? I have had frequency, urgency and urethral sensitive for 2 1/2 years. although never being officially diagnosed with IC. How do I have my doctor check for colonization? He is not fimialr with IC but is the only doctor that I have found that is willing to work with me and willing to do the "broth culture". Most importantly, what is colonization? I am worried about starting long term antibiotic therapy but I don't want my symptoms to get worse. Has anyone done antibiotics therapy?
    What were the results? Any information would be helpful.
    DO NOT GIVE UP! Just because an expert tells you that it is not bacteria related does not mean that you have to take their word for it. Find a doctor that is willing to work with you. If I listened to the IC expert I would have never persuade the "broth culture" and maybe my symptoms would have become worse. Doctors are not GOD. They only practice what they know. If they have not been taught something they won't practice it. I am not sure if bacteria is causing my symptoms but it is strange that two regular cultures came back negative and the broth came back positive, all in the same week.



    :woohoo:

  • #2
    Gspot,

    Congrats on pushing your doctors & finally getting something done! When you say the 2nd doctor "ordered" a broth culture -- did he order a hospital to do it? Or did he send your urine to United Medical in Virginia? What bacteria did it find?

    I don't know anything about colonization but would also be interested in how long it takes also. I started long-term antibiotics about 6 months after my first recurrent UTIs & IC symptoms. The antibiotics seem to be working for me, but it takes a long time & I'm still not totally cured.

    Aline


    Originally posted by Gspot View Post
    Hello
    Last week I decided to call BOTH of my urologists and demand a "broth culture" test. One of them is supposedly an expert in the IC field. The expert told me that ALL bacteria shows up on a regular urine culture if bacteria is present. He completely dismissed the broth culture and sent me for a regular urine culture which I have done a million times before. The results were negative, of course. I then called my other urologist that I have been seeing for my kidney stones. He order a urine culture and specifically asked for "gram-positive bacteria" testing. This also came back negative. I urged him to give me a order to have a "broth culture". He finally agreed and guess what? It was positive. I have no idea if I should be happy or worried. I have read a lot about bacteria colonizing and I'm worried. Does anyone know how long it takes for bacteria to colonize? I have had frequency, urgency and urethral sensitive for 2 1/2 years. although never being officially diagnosed with IC. How do I have my doctor check for colonization? He is not fimialr with IC but is the only doctor that I have found that is willing to work with me and willing to do the "broth culture". Most importantly, what is colonization? I am worried about starting long term antibiotic therapy but I don't want my symptoms to get worse. Has anyone done antibiotics therapy?
    What were the results? Any information would be helpful.
    DO NOT GIVE UP! Just because an expert tells you that it is not bacteria related does not mean that you have to take their word for it. Find a doctor that is willing to work with you. If I listened to the IC expert I would have never persuade the "broth culture" and maybe my symptoms would have become worse. Doctors are not GOD. They only practice what they know. If they have not been taught something they won't practice it. I am not sure if bacteria is causing my symptoms but it is strange that two regular cultures came back negative and the broth came back positive, all in the same week.



    :woohoo:
    History:
    * Recurrent UTIs (sexually related) beginning April 2006.
    * Diagnosed with HPV & mild cervical dysplasia, Aug 2006.
    * Diagnosed with possible IC, urethral polyps & possible Hunners ulcer in Jan 2007.
    * Had broth culture done at United Medical Labs, Feb 2007, Group D Strept (enterococcus) found in regular agar culture & broth culture. Second broth culture Oct 07 (agar culture negative but entero in broth).
    *Vulvar vestibulitis symptoms while on Augmentin (disappeared after I stopped taking it)

    Prescriptions:
    Amox & Augmentin for 4 months.
    Nitrofurantoin for 4 months.
    Diflucan or Nystatin if needed.
    Nordette 30

    Non-prescriptions:
    Femdophilus, acidophilus, Vitamin A, vit E, folic acid, vit D3, selenium, oregamax, panax ginseng, shiitake/maitake, coleus forskholi, cystex if needed, calendula gel for vulvar fissures (this stuff is great!)
    .

    Comment


    • #3
      culture

      Ok i have read a bit about the broth culture and other "stronger" cultures. Can anyone say that they have been positive for infection by one of these and went on to treat it and feel better?
      Daily Meds:

      IC-Meds
      Ditropan XL 5 BID, Elavil 50 QD, Elmiron 200 BID, Hydroxine 50 BID. As Needed: Bacofen 20, Prosed DS, Hydrocodone/Apap.

      Other Meds
      Adderal 10 QD, Remmeron 37 QD (I take 1 1/2 of 25 mg)

      With the help of my doctor moving my meds around a bit by increasing this and decreasing that I have found a good combination of meds (for now and I pray a long time from now).

      Comment


      • #4
        Carol,

        I had a urine culture done at United Medical Labs in Virginia in Feb 2007. They did both a broth culture and an agar culture looking for both gram positive & gram negative bacteria - both found found Streptococcus D (enterococcus). (Many doctors claim enterococcus is a contaminant, but the medical literature says enterococcus is one of the primary causes of complicated bladder infections).

        I started taking amoxicillin & augmentin In March 07. After 4 months I switched to Nitrofurantoin & have been on that for 2 months. I also stayed away from acidic foods & beverages to help heal my bladder. I still have very minor symptoms maybe once a week or right before my period. Its just a little minor urgency that doesn't last long. Overall, I would say the antibiotics have saved my life. If I had done nothing or listened to the doctors I had, I would be completely incapacitated & probably would have lost my job. I would say I'm about 85% cured after 6 months of antibiotics, & I can tell my bladder is continuing to improve.

        Hope that helps,
        Aline
        History:
        * Recurrent UTIs (sexually related) beginning April 2006.
        * Diagnosed with HPV & mild cervical dysplasia, Aug 2006.
        * Diagnosed with possible IC, urethral polyps & possible Hunners ulcer in Jan 2007.
        * Had broth culture done at United Medical Labs, Feb 2007, Group D Strept (enterococcus) found in regular agar culture & broth culture. Second broth culture Oct 07 (agar culture negative but entero in broth).
        *Vulvar vestibulitis symptoms while on Augmentin (disappeared after I stopped taking it)

        Prescriptions:
        Amox & Augmentin for 4 months.
        Nitrofurantoin for 4 months.
        Diflucan or Nystatin if needed.
        Nordette 30

        Non-prescriptions:
        Femdophilus, acidophilus, Vitamin A, vit E, folic acid, vit D3, selenium, oregamax, panax ginseng, shiitake/maitake, coleus forskholi, cystex if needed, calendula gel for vulvar fissures (this stuff is great!)
        .

        Comment


        • #5
          I am thinking about having a broth cluture done, but I am alittle skeptical and dont want to be on antibitoics for any length of time. I am also allergic to most all of them as it is( pennicillin, erythromycin, cipro,you name it). I also know that taking anti-B's for any length of time can cause severe issues with your system. I know first hand. I was sick with a bad throat infection a few years back and had to be on amoxicllin and augmentin at the time and it screwed my digestive tract up so bad, that now I have a motility disorder and can only eat like a few things and no gluten at all. It caused me alot of misery and still does. Tread lightly when thinking about staying on anti-B's for any length of time, and make sure you are taking a strong high potent probitoic along with it.
          If I knew for sure that an antibitoic would cure my IC, I would find a way to take it, but I do know women who have also went that route and are worse for the wear. This disease is so frustrating.
          Jen

          Comment


          • #6
            Jen,

            I'm sorry you're allergic to so many antibiotics, & they have caused you problems. That makes things horrible if you have an infection.

            I've been fortunate that I'm not allergic to anything, so I've been able to do long-term antibiotic therapy. Augmentin does cause me problems like yeast & vulvodynia, so I can't take it for long. If I was unable to take antibiotics, I would have gone to a Chinese medical doctor/herbalist I know of.

            Unfortunately when women are not tested properly in the first place, even a simple infection with a drug-resistant bacteria can lead to bladder damage & the bacteria will just grow & colonize. Maybe others get IC with no bacteria, but I believe for some it is an infection that could have been cured if found early enough & treated properly. (well, that's just my own theory).... Its a chicken & egg question -- Did the bladder get damaged first & then the bacteria or did the bacteria cause the damage?

            Aline
            History:
            * Recurrent UTIs (sexually related) beginning April 2006.
            * Diagnosed with HPV & mild cervical dysplasia, Aug 2006.
            * Diagnosed with possible IC, urethral polyps & possible Hunners ulcer in Jan 2007.
            * Had broth culture done at United Medical Labs, Feb 2007, Group D Strept (enterococcus) found in regular agar culture & broth culture. Second broth culture Oct 07 (agar culture negative but entero in broth).
            *Vulvar vestibulitis symptoms while on Augmentin (disappeared after I stopped taking it)

            Prescriptions:
            Amox & Augmentin for 4 months.
            Nitrofurantoin for 4 months.
            Diflucan or Nystatin if needed.
            Nordette 30

            Non-prescriptions:
            Femdophilus, acidophilus, Vitamin A, vit E, folic acid, vit D3, selenium, oregamax, panax ginseng, shiitake/maitake, coleus forskholi, cystex if needed, calendula gel for vulvar fissures (this stuff is great!)
            .

            Comment


            • #7
              Hi Aline.
              I do also believe that IC may be bacteria related as well. I believe the problem is mainly caused by too many antibitoics to begin with. In the last years doctors have been giving out antibitoics like candy for everything, even for a slightest sneeze and the bacteria that were normally easy to irradicate have become much stronger and resistent to the antibitoics we have available. That is what I think.
              It is scary that I am allergic to so many antibitoics, it really concerns me. I mean I dont know what I will do if I even get a Bad UTI. I mean there are meds they can give through an IV, but who knows, I could be just as allergic to them. I have even heard that the more antibitoics a persone takes, it makes you more prone to getting the infections. I dont know. It is like a catch22 I guess.
              I am not sure what caused my IC. I think that even if bacteria are the cause, I think we had a defect in our immune systems or bladders to begin with, otherwise I think all women would be walking around with IC. I think most people are able to irradicate the bacterias, where we cannot. There is just not enough info and research on IC yet to really know. Not even the smartest urologist knows what causes IC. I dont think they even want to find a cause or a cure to be honest. I know this sounds bad, but think about it, for example, look at the AIDS virus. They hardly put any money into finding a cure for it, but yet put billions of dollars into making drugs to help maybe prolong a persons life. It is all about the almighty buck if you ask me as sad is that is true.
              Anyhow, my heart goes out to all of us here who deal with this awful disease. I do pray they will eventually come up with a cure, but that would mean they have to come up with a cause first I guess.
              Jen

              Comment


              • #8
                I've been on antibiotics for 4 yrs. I know my cultures are accurate and my uro is thorough, but it's not a good situation to be in. I don't know how long it takes bacteria to colonize, but that's what happened to me. My uro says it's not uncommon to see bacteria such as enterococcus and staph UTIs. He says he has no problem getting rid of them in healthy women. He also admits that they don't really know where bacteria fits into the IC picture. 10 yrs. ago he said bacteria wasn't an issue in IC. I wish more research would be done on the resistant strains of bacteria and IC. It's still a problem for those of us who are dealing with it, rather it causes IC or not. It's no fun to have a painful bladder, yeast, GI problems from the antibiotics, plus IC. Even the Infectious Disease drs. don't seem to know how to handle it out of the hospital environment. They seem to think that life-time antibiotics are a solution--that's all they have to offer. I know there's something wrong with my immune system because of the other problems I have and worry about being on antibiotics because they weaken the immune system more. You can't ignore infections, so I don't know what the answer is--except frustration. Jen, you said it best, overuse of antibiotics has created stronger, more resistant bacteria and now we're paying the price. I know amoxicillin used to be the antibiotic of choice for enterococcus, but I've read lots of research articles that say amoxicillin alone is not strong enough to kill enterococcus--it just suppresses it while you're taking it. Based on my experience, I would say be careful with the length of time you're willing to take antibiotics. I feel better on antibiotics, but once I stop them, I'm reinfected in 2 wks.--so that's not great.
                Aline, how long will you take antibiotics? It's a good sign that you've been able to switch to Nitrofurantoin. I hope you will able to come off antibiotics and stay infection-free.
                Debbie

                Comment


                • #9
                  Hi Debbie.
                  Wow, that is a long time to be on antibitoics. I am sorry you are dealing with all this with the constant infections. Did they say why you keep having these infections or what keeps the bacteria in your bladder? Which bacteria are in your bladder that they are finding? Do your cultures always have high counts of bacteria if you are not on antibiotics?
                  I pray to God that I never run into having to take anti-B's for any length of time, especially since I am allergic to most all of them, especially the ones that treat UTI's. I have no clue what I would do. I asked my urogyne's nurse once what they do for people who are allergic to all anti-B's and they get UTI's. She said they just leave it go and the bacteria will just colonize there, and they wont treat unless it gets serious. I did not agree with her on this. ALso I know you can get IV anti-B's, but I cannot afford to stay in a hospital for days on end just to take anti-B's, I would be living in ther streets then as our health insurance deductible is outrageous($2,500) then they cover 80% after that only.
                  Have you tried natural things to help keep the bacteria at bay like uva ursi, and goldenseal , colodial silver, etc...?
                  I always thought that Staph was a uncommon thing to see in the bladder. I was told that e-coli and strep are the most common. There has got to be a reason when a person keeps getting infections in the bladder. Maybe you are right, it has to do with the immune system. Also, I try and be very diligent about being extra clean, and after I have a BM I make sure I wash real well with soap and water since they say this is where the bacteria come from to begin with.
                  Which antibitoic are you on? I am allergic to pennicllin family,erythromycin, flagyl, also had a weird reaction to cipro and bactrim, I got pins and needles feelings all over and itchy feelings, so I think I now allergic to those as well. I have taken macrodantin before, but last time it messed my bowels up so bad, I could not have a BM for days, almost like it shut my system down. I had to take miralax to get me going again, but then after ten days on the miralax, I got hives and so I am allergic to miralax as well now which is polyethelene glycol, and I just discovered that they put polyethelene glycol in almost all antibiotics as a inactive ingrediant. That sucks.
                  Anyhow, I sure hope you get to feeling better and they can come up with a solution to all this and you do not have to stay on the antibitoics forever. Wouldn't you eventually become immune to the anti-B after awhile where it will no longer be effective?
                  Jen

                  Comment


                  • #10
                    Jen,

                    I appreciate your response. 4 yrs. is too long to be on antibiotics!!! The most consistent bacteria that I have are enterococcus faecalis and methillin-resistant staph. I've had others but these two have been persistent, esp. the enterococcus faecalis. The staph colony is in my right kidney and the e.faecalis is in my bladder. Every research article I read says that if you have chronic complicated UTIs, then it's either structural abnormalities or underlying immune disease or something like diabetes. My dr. has been in and out of my bladder and kidney, he's done MRIs, CTs, you name it--there are no physical problems. My frustration is that he continues to send me to Infectious Disease drs. and their answer is to take antibiotics forever. They've told me that some people are colonized and don't have symptoms. Maybe IC sets up a different situation. I don't think anyone really knows. My uro knows all the risks involved with antibiotic resistance, but he doesn't know what to do. If I'm not on antibiotics, then I end up with fever and blood--so that tells both of us that it's a true infection, not just bacteria irritating the bladder. If you're having frequent cultures, you can see the pattern of resistance--one year the enterococcus was resistant to everything in the Cipro family and a year later Cipro is the best antibiotic for it. My dr. is opposed to IV antibiotics--you don't have to be in the hospital--they can do it on an out-patient basis, but he says there's no need. He tried instilling gentimicin and vancomyacin in the bladder, but that didn't work either. I'm trying to pursue the immune stuff on my own. I have a motility disorder also. I take VSL#3, Culterelle GG and Femdophilus trying to help the natural gut flora. I've never heard that if you don't treat a UTI that it will colonize. My uro is always concerned about a kidney infection. I'm just finishing up Rifampin for the MRSE. There's not much that works against methillin-resistant staph. I'm sorry that you are allergic to so many antibiotics--that would be rough if you needed to take one. Like you said, until they find the cause, they won't find a cure. It's frustrating!!

                    Debbie

                    Comment


                    • #11
                      Hi Debbie.
                      Wow, how frustrating it must be for you. I wonder what is causing the bacteria to stay in you. There has got to be a reason. I wonder if the bacteria are coming from else where in your body and because your Kidneys are the bodies filtering system, maybe it keeps picking it up, I dont know though, that is just an idea.
                      I really would not want to do antibiotics through an IV either personally, but I dont think there is a choice when you are allergic to all them, at least I dont think there is. I did not know you can have IV antibitoics on an outpatient basis. My one doctor said you have to be hospitalized. I thought to myself, that is stupid, and expensive to have to be in the hospital just to take anti-B's, I mean it is not like they have you taking them through the IV all day long.
                      Does your infectious disease doc think that IC is caused my bacteria?
                      I hope you can lick this MRSA infection. I hear those are a B**** to get rid of. My husband is a teacher and one of his students had a staph infection( not of the the bladder, but from a cut), and he was on IV anti-B's for over two months just to get rid of it.
                      I wonder what they would do for a person who is allergic to most all antibitoics if they come down with a infection like this.
                      I hope they find an answer to this and some treatment. It looks like they need to come up with more potent antibitoics. I think it is viscious cycle. The more antibitoics we use, the stronger the bugs get and the bugs are quicker at adapting than our pharaceutical companies are at coming up with new and stronger meds.
                      I hope they can figure this out for you and for the rest of us who deal with this. It is so hard to live with. Hope you are feelinf better today.

                      Jen

                      Comment


                      • #12
                        Jen,

                        I get the impression that bacterial-related problems in IC patients is uncharted territory for drs, esp. with these resistant strains of bacteria. I haven't had the best experiences with Infectious Disease drs. To be honest, they haven't been that interested. I've been sent to our 2 local ones, and then out-of-town to 2 university med. ctrs. The first question is always "have you been tested for AIDS"? All of them have had minimal knowledge about IC. Lots of cranberry juice is not good advice for a patient with IC. My urologist has told me that other uros don't even believe that this could happen to IC patients. After reading the posts on this board, it's apparent that it's happened to more than one of us. I've never had any dr. tell me bacteria is the cause of IC, but I notice that alot of people who post here had bladder infections for a trigger event. But that doesn't really explain why it can run in families or why some of us get so many other conditions besides IC. IC reminds me of lupus--I know someone who has lupus and it only affects her joints, but I know others who have severe problems. It seems like IC is like that--it varies from person to person.
                        I was really surprised that your dr. told you IV antibiotics could only be done in a hospital. My sister-in-law got bronchitis caused by MRSA. They put the pic line in and she had to go to outpatient and have a bag of antibiotics for 2 wks.and then go to oral antibiotics. Not fun, but better than being in the hospital. I don't know what they do if you're allergic to the antibiotic you need. I have an appt. with my allergist tomorrow--I'll ask her what they do in cases like that.
                        Martha posted about Femdophilus and that made me start researching probiotics. There are quite a few microbiologists who are experimenting with probiotics and bacteria. It makes sense when 70% of our immune system is in the gut and antibiotics mess up our GI flora. I can understand why Macrodantin messed you up--I can tolerate Cipro, but that's about it. This is my last day of Rifampin --keeping my fingers crossed.
                        I just hope my daughter never has to deal with this. Wish none of us did.

                        Debbie

                        Comment


                        • #13
                          Interesting about the question of AIDS, because I was found to have cyclic neutropenia, which probably contributed to my IC. Long term antibiotics worked for me (although I usually have hives with most of them and need steriods to get rid of that), but didn't have any problems with the amoxicillin during the 3-4 months I was on it. I will continue to have broth cultures because of my low neutrophils (the white blood cells responsible for fighting UTIs and sinus infections), but I'm all healed now!
                          Holly
                          1/19/2006 diagnosed with PBS/possible IC
                          2/1/2006 Elmiron & Elavil 50mg
                          3/2006 began PN symptoms
                          7/18/2006 broth culture sent (found Strep D) stopped Elmiron & Elavil and began long-term amoxicillin - IC symptoms relieved at last!
                          09/29/2006 PNMLT found pudendal nerve damage on rt side (nerve block to be done Oct 4)
                          10/20/2006 - lyrica for PN pain (didn't last)
                          11/20/2006 - cymbalta for PN (didn't last)
                          12/2006 - stopped all meds and started Dr. Moldwin's therapy of valium and PT for PFD, which is still working for me
                          UPDATE 7/1/2008 - weaning off the valium...taking 2mg nightly about 5 days a week, so doing great. No more pudendal nerve pain, although I'm careful about how I sit at work and try to exercise to stay relaxed to minimize PFD. A powerplate workout machine helps massage those inner PF muscles, and I take MSM and glucosamine (in MonaVie) religiously, which are both natural antiinflammatories. I feel GREAT!
                          UPDATE 2/16/2010 - completely pain free!

                          Looks like the "IC" pain caused my PFD, which pinched and damaged my pudendal nerve, which in turn sends out misguided signals to my PF muscles....battling this pain cycle, but at least I have been pain-free bladder-wise for 2 years now!

                          JMHO - I don't believe that antibiotic therapy should be considered controversial....the theory that "IC" is a disease should be controversial. I believe that we all must find out what causes the damage to our bladder linings, stop that, and then let it heal. In only 9 short months, I added EVERYTHING back to my diet and have been "IC"-free for 2 years and counting.

                          Comment


                          • #14
                            Hi Holly.
                            Interesting. Where did you get your broth culture done at? I want to do one, but I will likely have to send my urine out by mail, and they say if you leave urine out any amount of time, it will grow bacteria on it's own, At least that is what I was told. I also think IC is caused by a bacteria as well. I am very interested in doing the broth culture. The only bad thing is, I am allergic to most anti-B's so I dont know how I would even be treated if they found a bacteria. I am from Chicago IL, and I do not think they even perform the broth culture here. If you could tell me where you had yours done, I would appreciate it. Who prescribed to you the antibitoics and how long have you had to take them for?
                            Jen

                            Comment


                            • #15
                              Wow, I just read about cyclic neutropenia on their support site. I'm so glad that someone caught that early and antibiotics worked for you. I can see why you will need to be monitored for infections for the rest of your life.
                              I'm glad you're able to get on with your life.

                              Debbie

                              Comment

                              Working...
                              X