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  • DNA program and antibiotic flares

    Hello friends,
    I have been working with my doctor and Microgen to do the DNA therapy and break up biofilms to target trapped bacteria in the bladder wall behind the biofilm. I am on round 7. Along the way much has been revealed as we go layer by layer. It is hard sometimes when it looks like we are getting to the "end" and six more show up. It is a lot of antibiotic therapy and some of the antibiotics CAUSE FLARES!
    Has this happened to you?? I think I was in so much pain that I hardly noticed this flaring before, but as I get slowly better - PLUS going on a no gluten AND anti-inflammatory diet (AMAZING DIFFERENCE) I can REALLY feel the flare now.
    Round 7 revealed 4 more bacteria and targeted treatment includes Sulfa and Clindamyacin. I started with the Sulfa yesterday and I was in a horrible flare in 45 minutes. It is just calming down now. I was feeling so good with the diet, almost pain free. I wonder if IV treatment would bypass this flare since it bypasses the digestive system?
    I am waiting to hear from my doctor, who is on vacation, to see what the alternatives might be.
    I cannot take the sulfa. I will try the clindamyacin in a few days. If I flare, I need an alternative. Or just stop treatment, at least for awhile.
    Thoughts? And especially can antibiotics cause flares? Which ones?
    Thank You!

  • #2
    Hi there!
    I Know your post is from back in September, but I am super curious as to how things are going for you? I had a DNA sequence test done through Microgen as well and my doctor put me on 10 days of 2 antibiotics based on my results. He is very unfamiliar with the DNA testing, but was good enough to try a round of antibiotics. I don't think they did anything because I don't feel any different. I'm wondering how long your doctor put you on each round of antibiotics before you had to get retested? My urologist really doesn't know the protocol. It's such a new technology and they don't have a lab here in Canada. I have to send the sample to the US.
    Thanks!

    Comment


    • #3
      Hello! Things are going well. Slow, but well. If your doctor does not know the protocol it will likely not go anywhere. MOST doctors have NO IDEA about any of this. The GURU is **** ****, MSN, APRN. I am working with her through my Urogynocologist Doctor (Dr Echols) and CNRP. (Andrea Martin) at Jefferson in Philadelphia. I don't actually know where Ruth is located but I am working with her through my CNRP. The protocol is very individualized for each person including lengths of time on antibiotics, which antibiotics to take in what order, which Biofilm Busters to use and when to take them (without Biofilm Busters none of this will work). I am going to try to paste a little YouTube video here of Ruth. If it doesn't work you can just google her. Also I think through TeleHealth visits you might be able to work with my docs, or maybe Ruth directly. BTW, I have suffered IC for 20 years. I am now on Round 9 (a year from starting) and I am about 80% pain free. We are not done yet though. The last round revealed a few more critter that came out from under the Biofilms. Apparently my body builds very strong Biofilms. I can tell you more about how all this works. The thing is you have to be patient because everytime you bust a Biofilm layer, more bacteria can emerge. So you may think you are almost done on round 3, and then a whole bunch more show up in round 4!
      Last edited by ICNDonna; 05-27-2021, 01:28 PM.

      Comment


      • #4
        Darvana- I just read your earlier posts. So what happened? This type of treatment is so controversial. I just wonder why so many urologists don't buy into the theory, but I guess they know of the dangers of overdoing antibiotics and without concrete evidence are unwilling to go down that path. Do we really know that the biofilm is so layered and that it is an actual biofilm that is releasing so many different pathagens? DNA I think can exist from a bacteria that is not active anymore and perhaps appear from contamination of the urine another way? I'm just asking questions here. I know who was treating you and there is a lack of transparancy about her results when I last searched awhile ago. But being everyone is so different, we cannot be critical of anyone seeking answers to such a complicated and mysterious condition as IC. I hope you have healed and can share more of your journey. Thank you and take care.
        I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.

        Comment


        • #5
          Hello...This is what I understand and is true for me, and in the results I continue to see. Biofilms are real. The body builds them to try to protect itself. Not just in the bladder. Bacteria (sometimes of different families) get underneath, they colonize. They are alive and well under there. Undetectable in a culture, untreatable by antibiotics. If a person has had UTI's for many years, layers do build up. Some people's bodies build stronger Biofilms than others. Mine builds very strong Biofilms. I have had IC for 20 years. I have gone through 10 rounds (with the DNA company and my doctors). Targeting specific bacteria exactly and using Biofilm busters along the way to break up the layers. More and more was revealed. Yes, it is long term antibiotic therapy. I am very close to pain free. Miracle. Every other thing I tried (which was everything available) failed. The person I am working with is an MD who works with The person you mention. Since this type of therapy is new and controversial, I am sure there is a lack of transparency. I was willing to try it. And it has changed my life. Thank you science for DNA therapy!

          Comment


          • #6
            I am a74 year old male. I have had ic for over 30 years. The only remission I have ever was had using a biofilm protocol, I was on long term antibiotics twice. The last time, about 10 years ago , my prescribing doctor died and I was left with incomplete treatment. Things were manageable, if you call needing a bathroom every hour during the day management. now I’ve got another flare. I am in Canada and it is beyond hard getting a doctor to think outside the box. The nurse practitioner some refer to sounds like she has elevated the protocol. I will have to search and search for a doctor up here.
            the only alternative, and I’m now being very strict diet wise, is installations, which are experimental and I’m too old to be a guinea pig and have a flare on top of a flare. I used to get by using zoplicone, which has always treated me well for sleep and amytriptoline. But the amy is now causing retention. Most painkillers do. I have a lot to live for in all areas of my life. But I’m just getting worn out. Mostly by the nights. I’m next going to try to get a script for ldn. Check it out for pain. Lot of material in it.

            Comment


            • #7
              Hi lildavid...See if you can find an Integrative/Functional Medicine Doctor. I am a 56 year old woman and I found Uro/Gynocologist after I was told to look for this type of Integrative/Functional Medicine Doctor. See if you can find an Integrative Urologist. Or even a person to speak to who works in an Integrative practice/environment. I googled it right now and a bunch of names came up in Canada. This person will very likely work with you, take a look at the DNA protocol. The DNA company my doctor uses is international. My doctor works with the Nurse Practioner (who is in another state from me). Together we have gone through 10 rounds of treatment. (Mine is long, I have very strong biofilms). She also put me on very powerful probiotics as we were working with the particular antibiotics and biofilm busters, each to be taken at very specific times. Some nights I sleep all the way through the night. If I wake up it is once. I have done instillations. They work, but only for a short time. The DNA treatment is a cure, not symptomatic relief. I hope you can find a doctor who will work with the NP. I bet they will if you explain it to them. Most doctors do not know about it...but many Integrative/Functional Medicine Doctors do. Let me know if you need any help!

              Comment


              • #8
                Dear Dirvana
                Thank you so much for your reply. I will march on until I find a doctor who is truly patient patient centered. You have inspired me. Love, David

                Comment


                • #9
                  lildavid--do not give up! there is a solution! I hardly have any pain now. I still have to watch certain foods...and for me-keeping the pelvic floor not tight (pelvic floor therapy)

                  Comment


                  • #10
                    Originally posted by lildavid View Post
                    I am a74 year old male. I have had ic for over 30 years. The only remission I have ever was had using a biofilm protocol, I was on long term antibiotics twice. The last time, about 10 years ago , my prescribing doctor died and I was left with incomplete treatment. Things were manageable, if you call needing a bathroom every hour during the day management. now I’ve got another flare. I am in Canada and it is beyond hard getting a doctor to think outside the box. The nurse practitioner some refer to sounds like she has elevated the protocol. I will have to search and search for a doctor up here.
                    the only alternative, and I’m now being very strict diet wise, is installations, which are experimental and I’m too old to be a guinea pig and have a flare on top of a flare. I used to get by using zoplicone, which has always treated me well for sleep and amytriptoline. But the amy is now causing retention. Most painkillers do. I have a lot to live for in all areas of my life. But I’m just getting worn out. Mostly by the nights. I’m next going to try to get a script for ldn. Check it out for pain. Lot of material in it.
                    My IC was diagnosed in 1975 --- it seems like I've had it forever, but I do well most of the time.

                    What dose of amytriptonine are you taking? If you're taking more than 10 mg, you might want to ask your doctor about reducing your dose to see if it will help without retention. You might also want to keep a detailed diary to see if you can identify triggers that effect your symptoms --- not a permanent thing, but even a few weeks might give you some answers. Write down everything that goes in your mouth, activities, urinary frequency, clothing, personal and laundry soaps, pain levels, along with time of day. Then you can review the diary and maybe come up with some things that have an effect on how you're feeling.

                    I hope you're able to find a urologist who will work with you, on cooperation with your primary care physician --- that can be very important.

                    Sending healing wishes,
                    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
                      I am doing very strict diet. And I’m fine with it. My retention has eased. Upped my liquid intake to 11 glasses a day. This creates its own issues, but retention is the worst. I feel like I’m going control of symptoms.

                      next job is getting to the core of this thing. In the past all my “remissions” were preceded by long term antibiotics. But both docs died before completion of treatment. So I’m now going after a doc who will work by nurse practitioner, nurse r k.

                      it’s definitely worth another shot. All previous docs believed in the bio mass theory and she appears to have mastered it. We shall see.

                      thanks for the love, Donna.

                      Comment


                      • #12
                        As for amy. I hate the drug. I was on 5 mgs before flare. I’m looking to get off it. But I think a need a pain killer like it but otc meds either flare me or do not work. I’m trying medical mj tinctures. I used them before but they are also anticholinergic. But not nearly as bad as amy, in moderation. I’m looking at low dose naltrexone, very few if any side effects. It appears to work for many with fibromyalgia, a nerve pain issue, like IC. It’s a shot. After that there are other substitutes, maybe gabbapentin. But it to is a “side effect “ drug. I guess I’ll find some omething. After flare settles down, and before that, I’ll experiment and come up with something.. about 12 years ago , after a mega flare, my doc put me in 125 mgs amy. Now that was a bummer of a trip but it helped I got it down to 5mgs, but even that was highly retentive. Yuck but that’s life.

                        Comment


                        • #13
                          I am just starting long term antibiotics for an infection that started way back in the beginning of 2021. I've been on 5 different antibiotics for different lengths of time and have finally just realized the Uro I'm seeing has no clue. He won't acknowledge I have IC. Insisted I take cranberry tablets which like a fool I did questioning my own sanity. Horrible flare. I am on Keflex now and they are still waiting for the lab report to come back on my urine sample. It always shows E-Coli and I am getting very depressed. This is the first I'm reading about biofilms. I had kidney stone removal too a few months ago and still have stones in my other kidney. I have no idea if my infection is being caused by the other stones. My doctor said he doesn't think so! I'm at a loss.

                          Comment


                          • #14
                            Originally posted by Dakota View Post
                            I am just starting long term antibiotics for an infection that started way back in the beginning of 2021. I've been on 5 different antibiotics for different lengths of time and have finally just realized the Uro I'm seeing has no clue. He won't acknowledge I have IC. Insisted I take cranberry tablets which like a fool I did questioning my own sanity. Horrible flare. I am on Keflex now and they are still waiting for the lab report to come back on my urine sample. It always shows E-Coli and I am getting very depressed. This is the first I'm reading about biofilms. I had kidney stone removal too a few months ago and still have stones in my other kidney. I have no idea if my infection is being caused by the other stones. My doctor said he doesn't think so! I'm at a loss.
                            It sounds like you are having doubts about what you are being told. Have you considered seeing a different doctor, in a different office practice, for a second opinion. No ethical physician will have s problem with this and test results, etc., will be shared if you request it.

                            Sending warm healing thoughts,
                            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


                            • #15
                              I got a lecture from the nurse in my urologists office how biofilms are not just layer upon layer but more like a community of bacteria meaning you just don't strip away layers. I'm sure if there were layers of such a biospy might reveal that. I'm pretty sure if IC were as simple as a layers of bacteria, somehow we would know by now. I'm not saying that some people's IC is not aggravated by bacteria or fungi or even viruses because it's my opinion we are just susceptible to whatever bacteria or whatever that comes our way and it just gets in there even at a low level and causes a flare. So maybe some people are feeling better on long term antibiotics because they keep killing whatever shows up, but the idea that they are hidden in layer upon layer I'm not totolly convinced. But I started researching and apprently there is a marker for biofilm in UTI in some people's urine! Why aren't doctors testing for this? Please if you are into the biofilm protocol with your doctor ask if they have ever heard of this and report back! https://www.nature.com/articles/s41522-018-0069-y
                              I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.

                              Comment

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