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  • Broth culture question

    I am new to thinking of IC as bacterial, having gone through so many a/bs, yet I have come back to thinking that there may/must be some bugs lurking there to be causing these symptoms.... too tiny to be detected on agar culture.... or maybe I am just getting increasingly desperate....

    I am looking for any info on Broth culture.

    If anyone can help, please do post!

    Can you get it done in the UK, or only in the USA? Has anyone had it done and found bacteria and treated them??

    xx
    I am in my mid thirties and single mum to two beautiful children. Bladder symptoms suddenly appeared November 2012 following severe ill health with cryptosporidium and gastritis.Apparent UTI never cleared up; ten different antibiotics later had rigid cystoscopy with hydrodistention and bladder biopsy. Diagnosed with IC April 2013 following discovery of chronic inflammation and mast cells++.Daily severe pain, frequency, urgency and urinary hesitancy.You can find me at [COLOR="#000080"]http://www.strugglingtosurvive35.blogspot.co.uk - or sometimes .com

    Current meds: just discontinued Elmiron, due to rectal bleed, plus hair loss and total exhaustion. was only on it a month. v upset.Fentanyl 50mg per 3 days pain patches (trying to reduce), Tramadol 150mg emergency top up, Diazepam 5mg if needed. Zolpidem 10mg per night. Past meds: Many a/bs including Ciprofloxacin and Cephalexin. Co-codamol,codeine, other mild painkillers. Cetirizine, Cimetidine, Nortriptyline and Hydroxyzine, all discontinued.

    Self-help: Avoiding dietary triggers, rest, hot baths, hot water bottles, cool packs, trying to reduce stress. writing my blog sometimes helps, playing with my children.
    Alternative therapy: reflexology and massage. Acupuncture limited help.
    Supplements omega 3 (flaxseed), multivit (low acid), aloe vera. Glucosamine and Chondointrin. MSM. L-arginine. NEXT STEP: BROTH CULTURE TO SEE WHAT NASTIES ARE REALLY HIDING IN MY BLADDER

  • #2
    Re: Broth culture question

    so anyone have any thoughts or experience of this?

    I have found a doctor in the UK who will investigate my urine sample more thoroughly, for a fee, and come back with a suggested treatment plan. She's a registered GP who is not happy with the way they do not test urine samples properly and has a special interest in microbiology.

    I figure anything is worth a shot.

    Please let me know if you've gone down this route, whatever your outcome was.... x
    I am in my mid thirties and single mum to two beautiful children. Bladder symptoms suddenly appeared November 2012 following severe ill health with cryptosporidium and gastritis.Apparent UTI never cleared up; ten different antibiotics later had rigid cystoscopy with hydrodistention and bladder biopsy. Diagnosed with IC April 2013 following discovery of chronic inflammation and mast cells++.Daily severe pain, frequency, urgency and urinary hesitancy.You can find me at [COLOR="#000080"]http://www.strugglingtosurvive35.blogspot.co.uk - or sometimes .com

    Current meds: just discontinued Elmiron, due to rectal bleed, plus hair loss and total exhaustion. was only on it a month. v upset.Fentanyl 50mg per 3 days pain patches (trying to reduce), Tramadol 150mg emergency top up, Diazepam 5mg if needed. Zolpidem 10mg per night. Past meds: Many a/bs including Ciprofloxacin and Cephalexin. Co-codamol,codeine, other mild painkillers. Cetirizine, Cimetidine, Nortriptyline and Hydroxyzine, all discontinued.

    Self-help: Avoiding dietary triggers, rest, hot baths, hot water bottles, cool packs, trying to reduce stress. writing my blog sometimes helps, playing with my children.
    Alternative therapy: reflexology and massage. Acupuncture limited help.
    Supplements omega 3 (flaxseed), multivit (low acid), aloe vera. Glucosamine and Chondointrin. MSM. L-arginine. NEXT STEP: BROTH CULTURE TO SEE WHAT NASTIES ARE REALLY HIDING IN MY BLADDER

    Comment


    • #3
      Re: Broth culture question

      Hi there I am also in the UK and would like to find a Doctor who can arrange for me to have a Broth Culture test can you tell me the details of the Dr you mentioned please
      Many thanks Rosie

      Comment


      • #4
        Re: Broth culture question

        I think if you have tried other things and you are still suffering, you should try it.

        Whenever I search for "success stories" online, many of them point to broth cultures and/or long-term antibiotics making them better. I know of two people in real life (my neighbor and my grandmother) who were diagnosed with IC. Both of them did a 3 month course of antibiotics and never had any more IC problems after that.

        While I'm not a fan of long-term antibiotics, it's something I would be willing to try.

        I got a broth culture done, and it showed Strep group D. I don't have a doctor willing to prescribe long-term antibiotics though.

        Comment


        • #5
          Re: Broth culture question

          Hi, i am also curious about the Broth Culture. I live in the US. The only place i know of that does that is in Virginia. I called them last week and found out you have to buy a kit yourself and mail it to them... im still concerned on how accurate it would be.Its in the mail for however long, i wish. There was some place i could go in person to do extinvice urinalasis and cutures..... ive had regular cultures since my uti and sincr the first anitial uti, all my cultures are clear.

          Comment


          • #6
            Re: Broth culture question

            Any success? I just sent away for a broth culture. I talked to a woman who was treated this way and get symptoms went away.

            Comment


            • #7
              Re: Broth culture question

              I suggest you talk with your doctor first. My main concern is the potential for contamination by preparing the sample, mailing and the delay. From working in a major hospital for 25 years, I do know that urine specimens are usually hand carried to the lab for testing or the lab makes regular rounds so there's little delay.

              Donna
              Stay safe


              Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
              Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

              Have you checked the ICN Shop?
              Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

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              • #8
                Re: Broth culture question

                Hi,

                Did you get the results of your broth culture back? I am contemplating doing one, and would send mine away to VA.

                Comment


                • #9
                  Re: Broth culture question

                  Yes, I did. It turned up a bacteria that was normally found on skin. Ironically I was taking a long course of the ab they recommended but for a ureaplasma infection. My symptoms did not go away. I have chatted with people who have had success with the broth cultures, though. I don't regret it, because I probably would've always wondered. Goodluck!

                  Comment


                  • #10
                    Re: Broth culture question

                    thank you! Have you found a way to manage your symptoms, or did they go away?

                    Comment


                    • #11
                      Re: Broth culture question

                      I am finally starting to get better, it's been 4 months since the onset of my symptoms. I have used a lot of supplements- not sure which have actually worked. I also switched to an alkaline diet- mostly veggies, some fruit, nuts and small amounts of fresh fish & chicken. The only med I am taking right now is hydroxyzine at night. It helps me sleep better. I stopped being negative and told myself I would get better.

                      Comment


                      • #12
                        Re: Broth culture question

                        Originally posted by rainbowgirl View Post
                        so anyone have any thoughts or experience of this?

                        I have found a doctor in the UK who will investigate my urine sample more thoroughly, for a fee, and come back with a suggested treatment plan. She's a registered GP who is not happy with the way they do not test urine samples properly and has a special interest in microbiology.

                        I figure anything is worth a shot.

                        Please let me know if you've gone down this route, whatever your outcome was.... x
                        Hi Rainbowgirl

                        I found your post from 2014 and wondered how it has all gone, with your broth culture. I am also in the UK (South East) and considering one with the doctor in Staffordshire. Just wondered if you thought it was worth the money as am also considering another private one through traditional methods but they culture it longer. Best wishes, Sus.

                        Comment


                        • #13
                          Re: Broth culture question

                          I just wanted to check in and give an update. I started having a lot of other health problems and kept getting worse and worse. I had a western blot test and was CDC positive for Lyme disease. I'm seeing an LLMD (Lyme Literate MD). Lyme bacteria is known to affect the bladder (among other things). Because I found out after 3 1/2 years of being infected, it will be difficult to treat. I will be on long-term antibiotics. I don't remember being bit by a tick and didn't get a bulls-eye rash. I don't frequent wooded areas and don't live in an area known for Lyme (I'm on the coast of NC). But yet I have it.

                          Comment


                          • #14
                            Re: Broth culture question

                            Originally posted by Sus View Post
                            Hi Rainbowgirl

                            I found your post from 2014 and wondered how it has all gone, with your broth culture. I am also in the UK (South East) and considering one with the doctor in Staffordshire. Just wondered if you thought it was worth the money as am also considering another private one through traditional methods but they culture it longer. Best wishes, Sus.
                            There is a doctor in London who uses another private lab he's had good results with. you can see him NHS or privately. I haven't asked his view on broth cultures, i did read so many mixed views on it though. but it appears my issue is mast cell, not infection anyway...

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                            • #15
                              Re: Broth culture question

                              Hi all,

                              What was the contact details of the U.K. Doctors you went to please for the broth culture?

                              Comment

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