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  • Re: Mycoplasma, Antibiotics and IC

    Thanks to both of you for the posts. I'm glad I copied down information before anything gets deleted. I'm an information hoard. Doesn't mean I'm going to try everything I read, but I at least like to investigate it. Thanks.
    Last edited by ICNDonna; 11-14-2014, 06:03 AM.
    Diagnosed Nov 2012 after birth of my daughter. I feel like IVF hormone injections triggered my debilitating IC symptoms, but that I had it mildly even before that and didn't realize it.

    Currently taking daily: probiotics, licorice root, vitex, vitaminB12, thyraxis, D3, Calcium/Magnesium, permeability factors, digestive enzymes. Nightly castor oil packs on my abdomen. I follow the IC diet, anti-inflammatory diet, gluten and dairy-free (most of the time), with as much organic, local food as possible.

    My approach is to try to get to the root of the problem, which according to everything I've read, is probably centered in the gut (read, chronic constipation my whole adult life). I have a list of things to try and keep checking things off my list. My inspiration has been Wendy Cohan's Better Bladder Book.

    Comment


    • Re: Mycoplasma, Antibiotics and IC

      I hope these posts stay up. There is a lot of life and money behind the findings posted. The snark and drama was unnecessary so that should probably go for forum standards but the rest is very hard won info meant to be shared.
      Last edited by ICNDonna; 11-14-2014, 06:04 AM.

      Comment


      • Re: Mycoplasma, Antibiotics and IC

        I would like to share what I have learned that lead me to try the Flagyl. I am going to give a post one more try. Because it is important to me to help anyone that I can so if per chance they have what I did, they don't have to live in misery as long as I did. I hope that my choice of words is eloquent and fitting for everyones tastes. I have spent four years reading everyones stories of pain, trials & errors, tears, frustration, triumphs, backslides, and felt it along with each and every one of you along the way. I know that you all are very and exhaustively reasearched to the point of tears as I was. Sorry if anyone took my wording wrong in my last post I did not mean that no one is doing their research I meant don't just take what the doctors say and live with it, look elsewhere constantly.
        Sorry this is long but here were my symptoms and what new info I had found that lead me to try Flagyl.I had the vaginal burning, urethral burning, trigone burning, got worse with every menstruation. I could not have sex. I lived in the bathroom. Every 15 to 45 minutes I had to pee. I could literally feel the urine draining from my ureters into my inflamed bladder. I had to strain to get the pee out. My bowel would always inflame when I had a "flare". I always responded to antibiotics (doxycycline) although they never found any bacteria. The antibiotics helped but never completely eradicated it. It always came back, and was getting progressively worse despite that i was doing everything right. Flagyl eradicated it.I don't know what it was to this day, but but after researching extensively on aerobic and anaerobic bacteria and parasites, and amoebas, that is when I started to think outside the box and try it. My hypothesis is, "rarely UTI's are caused by anaerobic bacteria", but it still happens. Anaerobic bacteria do not survive in oxygen, when we pee in a cup they die. The only way to effectively pull a sample of urine to be tested is supra pubic meaning catheter so the sample doesn't hit the air. Also the normal testing does not test for anaerobic bacteria. it is expensive and since they don't think it causes the majority of uti's they don't bother. anaerobic bacteria is elusive so even if they do a suprapubic aspiration of the sample, if it is not grown and cultured right in the right amount of time and environment, they won't find it. I wish my urologists had not been less focused on that IC diagnoses and more focused on making me better. I had to make myself better. i am feeling so grateful but also so sad and tearful that I had to live in so much pain for so long. And I wonder how many other thousands of women and men have the same thing being diagnosed with "IC". I am going to go back and educate my urologist. I am still and probably will always be on the IC diet and I still drink a ton of spring water. I imagine after four years of a sinister being in my bladder there will be a healing period. But now that the offender is gone, it will finally have that chance to heal properly. I just want my bladder to rest and heal. God bless my poor bladder for hanging in there and my strong spirit for never giving up. I am still retraining myself because I now have a pee habit that I have to break. And I am focusing on letting my bladder floor get back to normal after the four years of excruciating pain. You could say we are in rehab.
        As a side note the first couple of days of flagyl was hell. I emptied everything in my colon and my bladder was spasming it felt like period cramps, waking me up in the night, but I rode it out and I am glad that I did. May God bless you and your bladder and never give up! Our journeys are all so different so I am not saying this will work for everyone, but it did for me.
        Last edited by ICNDonna; 11-14-2014, 06:04 AM.

        Comment


        • Re: Mycoplasma, Antibiotics and IC

          Originally posted by Bad Cat Beta View Post
          I hope these posts stay up. There is a lot of life and money behind the findings posted. The snark and drama was unnecessary so that should probably go for forum standards but the rest is very hard won info meant to be shared.
          This thread started several years ago --- not sure why you are concerned about deletion.

          ????
          Donna
          Last edited by ICNDonna; 11-14-2014, 06:05 AM.
          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


          • Re: Mycoplasma, Antibiotics and IC

            Originally posted by Isabelle S View Post
            I would like to share what I have learned that lead me to try the Flagyl. I am going to give a post one more try. Because it is important to me to help anyone that I can so if per chance they have what I did, they don't have to live in misery as long as I did. I hope that my choice of words is eloquent and fitting for everyones tastes. I have spent four years reading everyones stories of pain, trials & errors, tears, frustration, triumphs, backslides, and felt it along with each and every one of you along the way. I know that you all are very and exhaustively reasearched to the point of tears as I was. Sorry if anyone took my wording wrong in my last post I did not mean that no one is doing their research I meant don't just take what the doctors say and live with it, look elsewhere constantly.
            Sorry this is long but here were my symptoms and what new info I had found that lead me to try Flagyl.I had the vaginal burning, urethral burning, trigone burning, got worse with every menstruation. I could not have sex. I lived in the bathroom. Every 15 to 45 minutes I had to pee. I could literally feel the urine draining from my ureters into my inflamed bladder. I had to strain to get the pee out. My bowel would always inflame when I had a "flare". I always responded to antibiotics (doxycycline) although they never found any bacteria. The antibiotics helped but never completely eradicated it. It always came back, and was getting progressively worse despite that i was doing everything right. Flagyl eradicated it.I don't know what it was to this day, but but after researching extensively on aerobic and anaerobic bacteria and parasites, and amoebas, that is when I started to think outside the box and try it. My hypothesis is, "rarely UTI's are caused by anaerobic bacteria", but it still happens. Anaerobic bacteria do not survive in oxygen, when we pee in a cup they die. The only way to effectively pull a sample of urine to be tested is supra pubic meaning catheter so the sample doesn't hit the air. Also the normal testing does not test for anaerobic bacteria. it is expensive and since they don't think it causes the majority of uti's they don't bother. anaerobic bacteria is elusive so even if they do a suprapubic aspiration of the sample, if it is not grown and cultured right in the right amount of time and environment, they won't find it. I wish my urologists had not been less focused on that IC diagnoses and more focused on making me better. I had to make myself better. i am feeling so grateful but also so sad and tearful that I had to live in so much pain for so long. And I wonder how many other thousands of women and men have the same thing being diagnosed with "IC". I am going to go back and educate my urologist. I am still and probably will always be on the IC diet and I still drink a ton of spring water. I imagine after four years of a sinister being in my bladder there will be a healing period. But now that the offender is gone, it will finally have that chance to heal properly. I just want my bladder to rest and heal. God bless my poor bladder for hanging in there and my strong spirit for never giving up. I am still retraining myself because I now have a pee habit that I have to break. And I am focusing on letting my bladder floor get back to normal after the four years of excruciating pain. You could say we are in rehab.
            As a side note the first couple of days of flagyl was hell. I emptied everything in my colon and my bladder was spasming it felt like period cramps, waking me up in the night, but I rode it out and I am glad that I did. May God bless you and your bladder and never give up! Our journeys are all so different so I am not saying this will work for everyone, but it did for me.
            God bless your bladder and you sweet spirit Isabelle! I'm so excited for you! Thank you for sharing your story! Blessings my friend!
            Last edited by ICNDonna; 11-14-2014, 06:06 AM.

            Comment


            • Re: Mycoplasma, Antibiotics and IC

              Isabelle, there is some good info on here but I hope you can re post under something like "Flagyl, Anaerobic Bacteria, I.C. Misdiagnosis" I could personally care less about your intro sentence except that it seems to negate the info here and would confuse a "newbie" because it is off topic. I suffered hard and long from going along with doctor's orders too. I can say very easily that you would not want to switch places with me. It's horrible, I wouldn't wish I second of on anybody (expect maybe for an obstinate doctor).

              That said, information you posted has little and ironically much to do with the thread.

              The mold/biotoxin/Lyme discoverers having to with innate immunity (25% of the general population is susceptible) has much to do with some of your basic discoveries and covers most (understatement) of the coexisting conditions you will see on this site. The immune system's reaction is inflammation causes hypoxia and capillary hypofusion (anaerobes love this environment) + lactic acid build up stored in the interstitial layers of the body). The correlations have been identified. Urinary practitioners have just started to pop up to address this and I.C. although it's been long identified in other communities (like autism) where this disposition is more prevalent.

              I'm glad it seems you are not dealing with the ulcers associated the definition of I.C. on this site (diagnosed by a hydrodistention test) and you found something to deal with what seems to be an acute, anaerobic infection. What is described in this thread is a genetically perpetuating cycle (that effects a strikingly large part of the population if exposed) that takes different means to stop. It's not a "find and kill type thing" but a body condition that makes for some of the pathogens that you were able to help with Flagyl. The problems is, when the conditions are there, The organisms will reappear because they have a good home. A chronic cycle of prescribed antibiotics and antifungals begins from miseducated docs and it worsens IBS, immune function etc.

              I'm very glad for your discovery and even more glad for your relief.

              Yes, I agree that Flagyl can help with anaerobic infections. I have several cats that can even attest to that. They were bleeding from their rectums and would try escape from their bottoms by running after going the litter box. It was horrible.

              Nobody here doubts your suffering any everybody sympathizes. All these years have pummeling and diminished ability to spend time on the computer have made my reporting a little clinical.

              Have a good weekend with your bladder out the way!
              Last edited by ICNDonna; 11-14-2014, 06:06 AM.

              Comment


              • Re: Mycoplasma, Antibiotics and IC

                Hey, Donna

                It's because one the members posted a reply in caps for the Admins to take her posts down. I don't see this now. So I'm glad. I have a good weekend
                Last edited by ICNDonna; 11-14-2014, 06:07 AM.

                Comment


                • Re: Mycoplasma, Antibiotics and IC

                  Actually this thread started back in 2006 and this is the thread and subject that I have been on topic with. Someone changed it from Mycoplasma, Antibiotics and I.C. and added the IC MOLD/Biotoxin illness and attempted to change the subject. If you go back to page one of the eight page thread it shows the original topic and these are the people that I wanted to see my post. But if you feel that my post belongs somewhere else, than maybe you can ask Donna to put it somewhere else for you because I don't know how to start a new thread. Thank you for your kind words. They are much appreciated.
                  Last edited by ICNDonna; 11-14-2014, 06:09 AM.

                  Comment


                  • Re: Mycoplasma, Antibiotics and IC

                    Originally posted by Bad Cat Beta View Post
                    I hope this spreads around.

                    Mycoplasma pneumonia was the key to discover mold/biotoxin illness as what's looking to be the underlying immune/inflammatory cause and these offenders produce MYCOTOXINS. BTW. I was hit with every antibiotic under the sun for a good part of decade w/ no infection infections except for Mycoplasma and Klebisellia pneumonia.

                    You can through all the antibiotics you want at it by it's more than probable show up again while helping make the environment more suitable for it in the future. One of the molds (Ochratoxin is known to cause kidney damage). Lyme and mold also go hand in hand as they can trigger latent susceptibility to each other, BTW.

                    There is a stunningly high correlation of I.C. and all the coexisting conditions you see with it in mold/biotoxin illness. 1/4 of the public has been identified susceptible through genomic extrapolation with with very subsets of susceptibility.

                    Anyone wishing to follow this trail can Google: CIRS, Mold, Biotoxin illness, innate immunity, Paradigm Change Mold or Dr. Richie Shoemaker. I recommend seeing a Shoemaker-cetified MD who also has a naturopathic orientation for getting proper info on this.

                    Too many docs are going of old/inaccurate information and saving their research time for golf.

                    Good luck to all.
                    Yes, my dr. Does suspect mycotoxins. How did you get them under control?
                    I'm to get a couple of nasal sprays one being Nystatin.
                    Thank you for posting this.
                    Last edited by ICNDonna; 11-14-2014, 06:07 AM.

                    Comment


                    • Re: Mycoplasma, Antibiotics and IC

                      This thread began with a subject of Mycoplasma, Antibiotics and IC --- somehow the subject was changed. I have edited the posts to the original intent. If anyone wishes to change the discussion, please start a new thread so the subject will be the same throughout the thread. It's an interesting discussion and I think it will be easier for everyone to find the information they are looking for.

                      Thank you!
                      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

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