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  • #16
    Re: Dr Fugazzotto?

    Hi I was thinking of doing the same thing but not sure where to start. Can you please give me more info! Thanks!

    Comment


    • #17
      Re: Dr Fugazzotto?

      Sure. Google United Medical Labs -http://www.unitedmedicallab.com/ you can find them located in VA. Find the form for the Broth Culture and instructions. You generally must be off all "drugs" for a certain amount of time. Snag a sterile urine cup (dr's office) and follow the instructions to ship with dry ice or with an ice pack. The cost is $249 plus shipping. *include your email address
      and they will email you the lab report.

      Also, FYI - there is an entire community that believes that IC is an Occult Biofilm Bladder Infection. Email me - [email protected] - if you
      would like more information.

      Comment


      • #18
        Re: Dr Fugazzotto?

        I agree that IC probably is caused by some pathogen of some sort. However, I also believe there is A whole lot more to it and it will take more than just taking some antibiotics to get rid of IC. I was on long term low dose antibiotics and it did definitely make my bladder 95% better! I did great for 4 years while on the antibiotics. Sadly, the antibiotic stopped working( resistance). Now my IC pain is horrible again. Everyone has pathogenic bacteria in them, everyone. The key here is getting the immune system to handle it. People with IC have immune deficiencies of some sort which hold the immune system back from doing it's job at killing and keeping these bad bugs at bay. I am pretty sure everyone that has IC also had Gut dysbiosis. Most of the immune system is located in the gut. If the gut is not healthy( leaky gut issues), then the other parts of the body will begin to suffer. IC is very complex and there is no easy answer. Believe me, my bladder felt SOOO much better when I was on the antibiotics. They do work, but only while your on them. When you get off of them, the problem will be back, trust me. You have to fix the whole body in order to fix the bladder. It is not easy and I am still trying to learn as I go. One thing I know is that we all have bacteria in us, our bodies are mostly made up of just that, Bacteria and H2o. I think some of us have overgrowths of pathogenic bacteria in our bodies( gut and bladder) which are causing damage to these organs. People who have Gut dysbiosis have leaky gut issues. This means that free radicals( bacteria) that are in the intestines/gut leak through the intestinal wall and out into the blood stream. This in turn sets off the immune system and causes inflammation in the body and comes out in the form of different diseases ( IC, Crohn's, MS, etc..). I am still trying to learn about things as I go. I have been dealing with IC for 10 years now. I have been chronically ill since 2003. It has been nothing short of a battle for me. I have learned a whole lot along the way and educated myself and continue to do so. Long term antibiotics are really not the answer. As much as I would love to just take antibiotics forever, I know that is not the answer. Antibiotics can actually make things worse. It will deplete your body of beneficial bacteria you need in order to get your gut back to health. Sometimes antibiotics are necessary. When they are, make sure you are taking a High dose potent probiotic with many strains of bacteria to help maintain your gut while taking the antibiotic. You can send your urine to the lab and it may find bacteria. You can take the antibiotic, but you will Not kill all of the bacteria. Some will remain. In the normal healthy individual, the immune system would be able to pick up and clear the rest of the bacteria or keep it at bay. But we are not normal healthy individuals because we would not have IC if we were. The problem will just come back. I know from personal experience.

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        • #19
          Re: Dr Fugazzotto?

          Here is one problem I am seeing about the antibiotic discussion.
          *I agree - low dose, long term antibiotics do NOT work!

          (1) low dose, long term antibiotics are NOT recommended.
          (2) proponents of the bacterial theory of IC believe in: (a) High dose, (b) Long term (2 - 9 months), of (c) the right antibiotics. Low dose antibiotics are a bad idea because the body will become resistant
          to the antibiotics.

          I believe in HIGH DOSE of antibiotics for a sufficient amount of time (2 - 9 mths) in order to kill a specifically identified bacteria. This makes sense if you think of IC as a biofilm bacterial infection.

          Okay - think of the scientific method- ask yourself - do you believe that IC really has (1) no known cause, and (2) no known cure? Do you believe in the medical field 100% - remember in the 1950's three researchers claimed that IC was an emotional/mental ailment and sent women with it to the insane asylum. We could all be in a psychiatric ward if we lived during the 1950's.

          IC supposedly flares and gets better, and flares and gets better . . . for no reason?
          Hmm . . . that is how a biofilm infection works. The biofilm releases bacteria = flare, body fights
          it - feels a little bit better.

          Also - has your doctor ever even heard of the broth culture method? My doctor had never heard of it.
          The final statement - (1) the trial and error medical treatments are always there - (1) bladder
          instillations, (2) lifelong prescription drug use - elmiron, elavil.

          All of us with IC have little to lose and much to gain by pursuing the bacterial theory of IC and attempting
          to cure ourselves with a HIGH dose, long term use of antibiotics combined with anti-inflammatory supplements and probiotics.

          If the arguments against it are . . . it doesn't work for everyone - look at elmiron - it only works for 30% of patients (has to be taken continuously - most patients take it with 2 other drugs). Elavil blocks nerve pain.

          Comment


          • #20
            Re: Dr Fugazzotto?

            I agree that IC is very complex and unique to each individual. This reminds me a lot of the debate about Lymes disease treatment that I'm seeing a lot of now too. How there are some who believe in chronic Lymes and believe that long term antibiotics are the way to cure it and others who believe that a course of 2-4 weeks of antibiotics will get rid of it but that unfortunately there are some who have "post treatment Lyme disease syndrome" (roughly 20% of people who contract Lymes suffer permanent long term effects but no longer have Lymes disease just damage caused by the disease). Sorry if this is repetitive if you already are aware of this controversy. I kind of wonder if IC is the same. The way my doctor explained it to me is it is an autoimmune disorder that is on "attack mode" and hypersensitive kind of like you were saying Jen74.
            I guess it comes down to what you decide makes the most sense to you and what treatment you think will work best. I find it all very interesting. I was watching this show called "Diagnose Me" and there are simply things doctors just don't know about yet. Specifically saying, maybe there is a bacteria they haven't discovered yet so they don't even have an antibiotic for it. I have never done a broth culture. Maybe someday I will. Unfortunately right now I'm to broke lol. My question I guess is with long term antibiotics whether high or low dosage can you build an immunity to it? That would make me apprehensive but I understand what you're saying chelseau that if you are really in pain it may be worth a try. Best of luck to everyone on this journey. I just keep praying doctors will figure it out.
            Diagnosed via cysto/hydro 2/6/2015
            Symptoms: frequency, urgency. uretha discomfort, mild bladder pain (a raw sore type feeling.)
            CURRENT TREATMENTS:
            IC Diet (2/15) , Elmiron 100-300mg (3/15-5/16) insurance issues switched to PPS-DR (5/16-present) 2 150mg capsules daily (pentosan polysulfate sodium same formulation in Elmiron) DH Aloe 3-6 capsules daily (3/15), Schiff Digestive Advantage probiotics 1 pill daily (3/15), Amitriptyline 25mg- (5/15-8/16)attempting to wean down due to suspected weight gain side effect. Hydroxydine 25-50mg as needed at bedtime (5/15) Quercetin 2 pills daily to help immune system and body inflammation. Cystoprotek 4 capsules daily (8/15). Prelief as needed.
            USE DURING FLARES: Heating pad, ice packs for PFD, Vaginal Valium 10-20mg, Uribel, Pelvic floor stretches.
            PAST TREATMENTS: PFD physical therapy (6/15-10/15) & Counseling for stress mgt (9/15-12/15) both very helpful. GNC brand progesterone cream (not sure if this made a difference). Too many different diets and herbs to list.
            TRIGGERS: STRESS STRESS STRESS. BCP. Hormonal fluctuance (ovulation/period). Coffee, artificial preservatives and dyes.

            Comment


            • #21
              Re: Dr Fugazzotto?

              I was on long term high dose antibiotics for awhile and then went down to low dose. I did really well for that period of time. A very close friend of mine who also has IC did the broth culture several times and was on IV antibiotics for 6 months ( 3 different ones that were high dose broad spectrum). She then went on oral ones for about another year. Her IC did go away for about 18 months. Then it came back ten fold! I agree with you that there is definitely some sort of pathogen wrecking havoc on our bladders, but I can guarantee you IC is not just a disease of the bladder. There is much more to it than that. Antibiotics high dose for months on end is likely going to cause worsening of leaky gut which in turn will cause inflammatory issues all throughout the body and the development of even more pathogenic bacteria. It is like a vicious cycle.

              I was diagnosed with probable Lyme disease 8 years ago. I know so many people who have chronic Lyme disease that are on high dose pulsed antibiotics that do well while they are on them. When they stop taking them, all the symptoms eventually return. A lot of them also have developed awful gastrointestinal issues due to the antibiotics. I know when I was on the antibiotics ( and mind you, I was taking High doses of very potent probiotics) It messed up my gut. I am sure it would have been worse had I not been taking super high doses of probiotics. It is very complex. I believe IC is very similar to Lyme like Rshell84 was saying. In fact some people that have IC may even have Chronic Lyme disease and not be aware of it.

              I do not have much faith is Western medicine when it comes to treating any kind of chronic illness. They do not know anything about it. Urologists only treat the bladder, gastroenterologists only treat the gut, etc.. IC and a lot of these chronic illnesses are far deeper than just involving one organ. It is a whole immune system dysfunction/deficiency. This is why antibiotics alone will Not get rid of IC. Believe me I have been dealing with this for 10 years. I have seen many many specialists ( allopathic as well as holistic practitioners). The holistic ones seem to be more on track as they do try and treat the whole body versus just the organ, but even some of them are stumped.

              There is a reason our bladder lining is permeable. I believe it all starts with some kind of dysbiosis of the gut which in turn causes inflammation and damage all throughout the body. I am sure pathogenic bacteria are playing a role as well as parasites and viral infections. Again, this is due to gut dysbiosis as well as immune deficiency/malfunction. I am sure genetics plays a role as well. There is a myriad of reasons IC develops in a person. I wish it were as easy as just taking an antibiotic or a pill and getting cured, but unfortunately it is not.














              Originally posted by chelseau View Post
              Here is one problem I am seeing about the antibiotic discussion.
              *I agree - low dose, long term antibiotics do NOT work!

              (1) low dose, long term antibiotics are NOT recommended.
              (2) proponents of the bacterial theory of IC believe in: (a) High dose, (b) Long term (2 - 9 months), of (c) the right antibiotics. Low dose antibiotics are a bad idea because the body will become resistant
              to the antibiotics.

              I believe in HIGH DOSE of antibiotics for a sufficient amount of time (2 - 9 mths) in order to kill a specifically identified bacteria. This makes sense if you think of IC as a biofilm bacterial infection.

              Okay - think of the scientific method- ask yourself - do you believe that IC really has (1) no known cause, and (2) no known cure? Do you believe in the medical field 100% - remember in the 1950's three researchers claimed that IC was an emotional/mental ailment and sent women with it to the insane asylum. We could all be in a psychiatric ward if we lived during the 1950's.

              IC supposedly flares and gets better, and flares and gets better . . . for no reason?
              Hmm . . . that is how a biofilm infection works. The biofilm releases bacteria = flare, body fights
              it - feels a little bit better.

              Also - has your doctor ever even heard of the broth culture method? My doctor had never heard of it.
              The final statement - (1) the trial and error medical treatments are always there - (1) bladder
              instillations, (2) lifelong prescription drug use - elmiron, elavil.

              All of us with IC have little to lose and much to gain by pursuing the bacterial theory of IC and attempting
              to cure ourselves with a HIGH dose, long term use of antibiotics combined with anti-inflammatory supplements and probiotics.

              If the arguments against it are . . . it doesn't work for everyone - look at elmiron - it only works for 30% of patients (has to be taken continuously - most patients take it with 2 other drugs). Elavil blocks nerve pain.

              Comment


              • #22
                Re: Dr Fugazzotto?

                There is another test that you can have done at PathoGenius Labs in Lubbock, TX. Phone 806-771-1134.
                Ask for L1 and L2 - this is the test for interstitial cystitis bacteria. It is $300. http://www.pathogenius.com/
                Call and they will send you a free test shipment kit complete with a test tube and a box. Your doctor will need
                to sign off on this.

                Comment


                • #23
                  Re: Dr Fugazzotto?

                  So my update - diagnosed with IC in May. I had the broth culture test done end of June - 1. pseudomonas, and 2. staph. Tried Cipro for (5th week). I have 5 weeks left. I haven't had 24/7 pain in 3 weeks. I am taking biofilm dissolvers - Kirkman Biofilm Defense, etc. I am also taking 2 tsp xylitol and 2 lactoferrin (500 mg) twice daily. I take several anti-inflammatories - 1. wobenzym, 2. Quercetin, 3. Oil of Oregano (extra strength). I feel that I am getting my life back.

                  Comment


                  • #24
                    Re: Dr Fugazzotto?

                    What ever happened after it came back. were you able to go into remission again?

                    "I was on long term high dose antibiotics for awhile and then went down to low dose. I did really well for that period of time. A very close friend of mine who also has IC did the broth culture several times and was on IV antibiotics for 6 months ( 3 different ones that were high dose broad spectrum). She then went on oral ones for about another year. Her IC did go away for about 18 months. Then it came back ten fold! "
                    Last edited by Florida flower; 07-25-2016, 04:06 AM. Reason: wanted to add quote

                    Comment


                    • #25
                      Re: Dr Fugazzotto?

                      I was wondering exactly what you tried and what dosage. I believe my IC began after a 4 hour surgery and 4 days in hospital with indwelling catheter. JUST read this article today on Dailymail.com by reporter Martyn Halle dated august 20, 2016 and one woman ( i think) left a comment at the end of piece that she has cystitis for 20 years, lots of idiot rude doctors lots of tests and then moved to France and it was diagnosed asap and treated with high dose antibiotics. ...they give detail. it's a REALLY good article with an interview you can watch with an American researcher who says his work has shown the the bacteria that causes 80% of UTI's can embed very deeply and he's proved it in the lab....many docs still refute this. tried to leave a comment there to ask her but couldn't figure out how to do it,
                      So DOES ANYONE KNOW HOW EUROPEAN/FRENCH DOCS TREAT IC ?????

                      Comment

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