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  • Mycoplasma, Antibiotics and IC

    "A patient came requesting treatment for chronic interstitial cystitis - she had read that mycoplasma can be a causative agent and could be treated with doxycycline. Is there any evidence to support this?"

    Read the UK Primary Care Question Answering Services response at:

    http://www.clinicalanswers.nhs.uk/in...?question=3615
    Last edited by icnmgrjill; 06-02-2007, 12:57 PM.
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  • #2
    Thank you, Jill, this is very interesting! I had noticed that sometimes my symptoms lessen on antibiotics, but antibiotics never cured my IC...it's interesting to see a report where they used different antibiotics in sequence!

    Blessings,
    Lori

    Comment


    • #3
      Thanks for this posting. I've had constant bladder pain since Feb 2005. Still not formally diagnosed as having IC, but symptoms very similar. Was put on 3 lots of antibiotics in April of 2005 - doxycycline, metronidazole and amoxicillan. I was in very severe pain at the time and my symptoms did improve over a few days before getting worse again.

      I've been looking for info on mycoplasma in relation to painful bladder conditions, but also in relation to fibromyalgia which I have as well and often occurs with bladder conditions such as IC. I can't help wondering if there is some kind of link that is not understood very well yet. Have found stuff on the net suggesting links between mycoplasma and fibromyalgia and mentioned it to my doctor the other day. She said it's interesting but seemed fairly doubtful about it. Still feel like there is some link between all these things. It would be great if connections were found leading to a direct treatment which could be applied to IC and related conditions. Can only hope.

      Comment


      • #4
        Bacteria and antibiotics

        Jill,

        The response you cite from the UK website includes mention of the one study done in 2000 on the treatment of IC symptoms with antibiotics. If you read the whole article in the Journal of Urology detailing the study you see that they were unable to find any bacteria in the patients participating. But they decided to treat with antibiotics, in a scattershot approach, using 6 different ones sequentially for 3 weeks each. The answer on the UK site failed to say that 48% of the patients on antibiotics improved, which is better than the response from Elmiron.

        But as someone who has spent much time investigating antibiotic treatment I want to point out that those of us who have had success know that the key is to find the bacteria possibly causing the problem and treating it with the right antibiotic for the right amount of time which can be several months. If we are dealing with bacteria in a biofilm, which is very possible, they are hard to detect and hard to treat. We know Scott Hultgren has found biofilm formation by E. coli, but other species are capable of protecting themselves via biofilms, too. There is a Japanese study showing Enterococci can form biofilms in human bladders and these can be polymicrobial. The U of MD study was not definitive in dismissing bacterial infection - they just weren't able to find bacteria.

        It is possible for there to be other bacteria and viruses that cause urogenital symptoms, such as Mycoplasma hominis and Ureaplasma and Chlamydia, present. These are even harder to isolate than UTI bacteria, but if a patient does not respond to several months of the right antibiotic for a diagnosed bladder infection it is worth looking into testing for the other bugs. Some patients are being tested for Lyme Disease (Borrelia), especially if they have other symptoms.

        We are finding the presence of UTI bacteria in the case of urogenital symptoms is one big part of the picture, but certainly other pathogens could be involved in addition. Testing is key and good testing is hard to find.

        Martha F

        Comment


        • #5
          Thank you for sharing this, Jill. It's very interesting to know.

          Warm hugs,
          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.

          Patient Help: http://www.ic-network.com/patientlinks.html

          Sub-types https://www.ic-network.com/five-pote...markably-well/

          Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

          AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

          I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
          [3MG]

          Anyone who says something is foolproof hasn't met a determined fool

          Comment


          • #6
            This is very interesting Jill. I do think that it is possible that there may be some kind of bacteria at a very microscopic level that our basic cultures just are not able to pick up that could be responsible for IC.

            The other theory is, lets say there are some different bacteria at a micro level in everyones bladder normally. But take a person who has a slight problem with their immune system, then it becomes a problem. When we have an infection our bodies first response is to attack which is normal. But when our immune system is compromised even slightly, then the body seems to go haywire and starts attacking everything in sight,( even normally harmless bacteria). But our body see's this bacteria as being harmful and will continuosly attack that area trying to irradicate this bacteria which is always normally present in the baldder and usually harmless in the healthy individual without any immune system problems.

            I guess what it boils down to is that right now, urology is still in the beginning stages of trying to learn all about IC and what could be causing it. As my gasrto doc said, Gastroenterologists are 30 years behind the anesthesiologists, and urologists are 30 years behind the gastroenterologists even. I agree with what L. Thomas said in one of the other posts, That they need to work harder on finding out how to calm the fire and then look into what started it. To many women are suffering with this pain day in and day out (myself), and need some kind of relief. And unfortunately, alot of people cannot tolerate alot of the side effects these meds have and it makes it even harder.

            But all in all, I do think the bladder is the innocent bystander here. The doctors need to look at the BIG picture instead of just focusing on the bladder. Much more is involved I believe. That is just my 2 cents whatever it is worth
            Jen

            Comment


            • #7
              ureaplasma urealyticum was discovered in the urine of me and my fiancee this summer. my doc did a special test for this because of the sudden onset of my bladder symptoms after a miscarriage (no surgery/drugs given for it that couldve injured my bladder). I had the first uti of my life (e. coli) about 2 months before my IC began.

              my urologist gave me hydroxyzine in case it gets very painful. a couple of months of antibiotics didn't knock it out. a few months on various types of antibiotics didnt knock it out. voiding symptoms were better but, alas... about to get an antibiotic sensitivity test on it to see where that goes. wish i had done that before taking the antibiotics so long. also need to get a swab to see if it's also present in my vagina and if inflammation is occuring because of it. alcohol bothers my bladder some. I will let you guys know about any interesting progress!

              Comment


              • #8
                I had read about the English study..

                I have to mention that my homeopath does not believe in IC. She believes symptoms are caused my a low grade bladder infection that does not get completly eradicated over a long time. Therefore as time goes on nerve endings get messed up and pain commences. I am still researching and we will see. So far the natural route (ie. change of diet to eradicate my candida overgrowth from being on so many antibiotics) This means no sugar and no wheat in my diet and I have noticed a big improvement. I am still battleing with infections but I take sovereign silver and I have not had to do antibiotics. I eat as alkaline as possible. I was never an alcohol or cofee drinker even though I do miss my chocolate..

                Good luck to everyone...

                Comment


                • #9
                  I had printed out a medical article:
                  "Interstitial Cystitis:
                  Definitions and Confusable Diseases
                  ESSIC Meeting 2005 Baden
                  Joop P van de Merwe and Jørgen Nordling"

                  And brought it to my gyno, because every place I've gone they always retest for bacteria and run the same urinalysis. And they always tell me "yes it covers every type of bacteria". The gyno I talked to said she didn't even know if there were tests for Mycoplasma or where she could get them..she said she might be able to order one to cover one type of it. I ended up having her prescribe me a Zpack just in case. After taking one month of Doxycycline and 3 grams total of Zpack I think it lessened the amount of urine I can hold from half a cup to 1/4th. I'm not 100% certain that maybe its not just a strain that is resistant to Zpack but more than likely I'm thinking I would have been cured with this treatment. Anyways I think it's best to get tested for everything that it could be which includes tests most doctors aren't aware of yet, because it helps to rule out the cause.
                  2&1/2 yrs now from taking Diflucan2x.
                  hydroxyzine hcl mostly during pms
                  heating pad
                  trying to stay on allergy diet & botanical food diet

                  Comment


                  • #10
                    Jeffmax, be extremely cautious with ingesting silver. The side effects can be severe and permanent.
                    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.

                    Patient Help: http://www.ic-network.com/patientlinks.html

                    Sub-types https://www.ic-network.com/five-pote...markably-well/

                    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                    [3MG]

                    Anyone who says something is foolproof hasn't met a determined fool

                    Comment


                    • #11
                      Originally posted by icnmgrjill View Post
                      "A patient came requesting treatment for chronic interstitial cystitis - she had read that mycoplasma can be a causative agent and could be treated with doxycycline. Is there any evidence to support this?"

                      Read the UK Primary Care Question Answering Services response at:

                      http://www.clinicalanswers.nhs.uk/in...?question=3615
                      I find it really, really interesting that mycoplasma infections are associated also with infection with a retrovirus named XMRV, which is being found as the cause of several autoimmune diseases from chronic fatigue syndrome to fibromyalgia to multiple sclerosis. It seems that now ITP is now on this list.

                      Here is a short introduction to the issue of the relation of XMRV to CFS and fibro: http://xmrv.me.uk/


                      I think this our silver bullet. Here are the articles on XMRV, mycoplasma and chronic fatigue/ME and their relation. The main thing XMRV does is infect immune cells and causes them to get confused and attack body tissue instead.

                      Watch this video and tell me what you think- does this sound like your IC symptoms?
                      http://www.youtube.com/watch?v=_TQzl...layer_embedded

                      Now back to XMRV and mycoplasma:

                      There is a correlation between the two. This article addresses this.

                      http://www.guptaprogramme.com/xmrv.asp

                      Here is a quote from the article:
                      There are two broad aspects to the immune system, TH1 and TH2. TH1 involves Natural Killer (NK) cells whose job it is to identify and destroy viruses. The TH2 side of the immune system involves, amongst other things, antibodies which respond to threats. There is evidence in the literature that patients with ME/CFS are “TH2” biased, i.e. the TH2 aspect of the immune system is over-activated, causing suppression of the TH1 side and high levels of inflammatory cytokines; patients have lower Natural Killer (NK) cell immunity. This bias may mean that opportunistic viruses and bacterial infections can no longer be kept at bay effectively by the TH1 side of the system.

                      RNase L conducts a function of holding the virus at bay until NK cells are available to eradicate the pathogen, however even the RNase L’s ability to perform this function can be compromised over time if TH2 dominates for too long. RNase L dysfunction was also reported in the prostate cancer cases of XMRV, although later research has not found a genetic link. In ME/CFS, any suspected Rnase L deficiency many simply be due to chronic TH2 dominance. If TH2 dominates for too long, it can be hypothesised that viruses such as HHV-6, Epstein Barr Virus (EBV), CMV and Parvovirus B19 can flourish, as well as bacterial infections such as mycoplasma and chlamydia pneumonia.
                      A CFS forum discussion of the mycoplasma issue in this disease:
                      http://forums.phoenixrising.me/showt...-Lo-XMRV/page6

                      Personally I'm betting that XMRV infection is the cause of IC too. The behavior of this virus explains nearly all of the symptoms of IC- it has been linked to chronic inflammation, it is responsive to hormones like cortisol and each day it seems they find this pathogen in the blood of more and more autoimmune diseases.

                      This would explain the co-morbidity of these diseases. The crazy thing is that XMRV was found by the Cleveland Clinic to be the cause of prostate cancer through the chronic inflammation created by XMRV.

                      http://my.clevelandclinic.org/urolog...arch/xmrv.aspx

                      What is even stranger is that prostatitis is mentioned by the ICA as being one of the conditions that occurs in tandem with IC:

                      http://www.ichelp.org/Page.aspx?pid=355

                      I posted this thread about my first ideas about a possibility of an IC and XMRV connection:
                      http://www.ic-network.com/forum/showthread.php?t=69293

                      It has been a few weeks and I'm drowning in information but the more I find, the more and more likely the idea there is a correlation makes sense. Of course all that needs to happen is we need some place like the Whittemore Peterson Institute to check the blood samples of IC patients for this virus.

                      Comment


                      • #12
                        I agree with you on this. I think that my IC began after I got a pelvic infection following a hysterectomy. I DO NOT think I would have this today if I had not gotten and infection. Also, most peope with IC seem to have several UTI's before finally getting IC. I do think there is a hidden bacteria or virus that is getting missed. Just like they thought stomach ulcers were from stress - they found otherwise - bacteria.

                        I couldn't open the link Jill posted. I would like to have read that.
                        Teresa

                        We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

                        Comment


                        • #13
                          Originally posted by Snowden1 View Post
                          I agree with you on this. I think that my IC began after I got a pelvic infection following a hysterectomy. I DO NOT think I would have this today if I had not gotten and infection. Also, most peope with IC seem to have several UTI's before finally getting IC. I do think there is a hidden bacteria or virus that is getting missed. Just like they thought stomach ulcers were from stress - they found otherwise - bacteria.

                          I couldn't open the link Jill posted. I would like to have read that.
                          Yes, I agree. Mine started with having my bladder stretched by being left sans bedpan for 10 hours after a rib fracture. Not fun, but right then my symptoms started. I too had mine start out with infections. What I'd wager is that the stretching and or the bacteria started that microscopic poring so common with IC bladders in me.

                          I think then what happened was this created a way for XMRV or something to infect the bladder wall. The fact is that XMRV infects tissue areas in people and what I think is going on is that each autoimmune disorder varies only by where the XMRV virus infects the tissue.

                          They have found a different retrovirus involved with lupus, juvenile rheumatoid arthritis, Sjogrens and Graves disease as well.

                          Here is information about this virus:
                          http://www.autoimmune.com/ADVAIntro.html
                          Autoimmune Disease Virus Assay (ADVA)


                          Researchers at Tulane Medical School have discovered a human retrovirus called the Human Intracisternal A-type Particle, or HIAP. It is the first A-type retrovirus to have been found in humans. Research data strongly suggests that this virus is the cause of four well-known autoimmune disorders. These disorders are lupus (systemic lupus erythematosus), Sjögren's syndrome, Graves' disease, and juvenile rheumatoid arthritis.

                          The Autoimmune Disease Virus Assay (ADVA) detects antibodies against HIAP. These antibodies appear in approximately 95% of patients with one or more of those four disorders but in fewer than 2% of healthy individuals. The Company believes that infection by this virus may produce the differing symptoms of the disorders in different patients because of genetic variations in the immune systems of the patients.

                          The published results of a study of an AIDS drug in Sjögren's patients suggest that anti-retroviral drugs may act against this virus.

                          The ADVA is covered by patents in the U.S. and other countries.

                          For more information about the HIAP-related disorders, see these pages:
                          I know some people here have Sjogrens and I have a friend who has this. I think this research is very important and for me, it explains things which otherwise are completely bizarre about IC. That quirky annoying virus causes its own unique mayhem.

                          It is likely this is the cause and it would be nice to not be beat up for our bodies acting in this way. From what I've read and heard, getting rid of XMRV is easier than getting rid of HIV.

                          Comment


                          • #14
                            Here is a link to the list from the WPI on autoimmune disorders officially linked to the presence of XMRV infection:

                            http://www.wpinstitute.org/xmrv/index.html
                            Overview

                            The spectrum of neuro-immune diseases including: Myalgic Encephalomyelitis (ME/CFS), Atypical MS, Fibromyalgia and Gulf War Syndrome, share common abnormalities in the innate immune response, which result in chronic immune activation and immune deficiency.

                            We have detected the retroviral infection XMRV in greater than 95% of the more than 200 ME/CFS, Fibromylagia, Atypical MS patients tested. The current working hypothesis is that XMRV infection of B, T, NK and other cells of the innate immune response causes chronic inflammation and immune deficiency resulting in an inability to mount an effective immune response to opportunistic infections. (See XMRV paper in Science.)

                            This discovery opens an entirely new avenue of Neuro-Immune Disease related research and our discovery has brought to this field world-renowned immunologists and retrovirologists building our team of collaborators to translate our discoveries into new treatments as soon as possible.

                            Because retroviruses are known to cause inflammatory diseases, neurological disease, immune deficiency and cancer, the discovery of XMRV has far reaching implications for the prevention and treatment of not only lymphoma, one of the potentially devastating complications of ME/CFS, but prostate cancer and perhaps many others.

                            Comment


                            • #15
                              XMRV is now also associated with leukemia, lymphoma and ITP
                              http://niceguidelines.blogspot.com/2...ated-with.html

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