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4 UTIs since end of May 2020

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  • #16
    oh yeah i have standing orders at home for culture, The Drs. office actually called me and told me they sent over some kind of one dose powder antibiotic I forgot what it is called . . .starts with an F I have never taken it before. Hopefully it will do the trick it won't be in until tomorrow. If bacteria wrong when culture is done, they will have to think of something else. I don't think it is a flare . . the hard part is now having to wait I would really like to do an instill but not supposed to if it is an active infection. I took 100mg of pyridium and it seems to be helping a little I won't know until I go. Another weird thing is Prydium works IF I have a UTI, if i take it and I don't have a UTI it will make me flare! but only seems like I can take one dose any more and it does flare.
    Diagnosed with IC sept. 2008, treatment then was hydrodistension, heparin instills for about 4 months and IC diet; symptoms lasted until sept 2009. Then only a couple of relapses overworking, stress etc. Then completely in remission until Jan. 2016 now pretty much symptom free as of mid august 2016.

    Symptoms: overall body aches, dryness feeling at vaginal opening, sitting makes it worse, standing makes it worse, stress makes it worse, no frequency or urgency, worse symptom is at night with panging of uretha/bladder.

    - went on diet, started Cysto Renew 3/31/16 and yoga at least twice a week.
    - tried uribel but really not for my symptoms since it seems it is for frequency and painful urination which I don't have
    - Ativan when needed to relax.
    - Elmiron only took for a couple of days; didn't like it
    - took atarax 1/2 10mg atarax pill at night really helped but gave me nightmares
    - tramadol worked great for back aches
    - generic claritin D worked best for me for calming bladder down and my panging
    - still taking cysto renew 4x a day and believe this and diet helped the most.
    - took dosage of cysto renew down to 2x a day and still ok

    Comment


    • #17
      I hope the pyridium helped.

      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


      • #18
        Well it did help the first dose and then the next day I took just 1 pill of 100mg and also took one Trimethoprim to see if could get a jump on the infection and was in flared horribly almost all night.
        The next day I stopped taking everything even Bladder ease. Then yesterday I started Bladder Ease and some aloe vera pills and today it feels like I have nothing wrong with me . Anyway Telemed tomorrow with urogyno to discuss UTIs and possibly pickup the Monural/FOSFOMYCIN. I am also looking into MicroGendx. I will take fosfomycin depending of what the culture says again. And if another or chronic UTI comes again will want to try MicroGenDX. On another forum I have gotten some tips regarding Marshmallow root tea for IC upkeep and Monolaurin to help ward off UTIs. As always keeping fingers crossed.

        P.S. do you know how to change the signature down below, thanks
        Diagnosed with IC sept. 2008, treatment then was hydrodistension, heparin instills for about 4 months and IC diet; symptoms lasted until sept 2009. Then only a couple of relapses overworking, stress etc. Then completely in remission until Jan. 2016 now pretty much symptom free as of mid august 2016.

        Symptoms: overall body aches, dryness feeling at vaginal opening, sitting makes it worse, standing makes it worse, stress makes it worse, no frequency or urgency, worse symptom is at night with panging of uretha/bladder.

        - went on diet, started Cysto Renew 3/31/16 and yoga at least twice a week.
        - tried uribel but really not for my symptoms since it seems it is for frequency and painful urination which I don't have
        - Ativan when needed to relax.
        - Elmiron only took for a couple of days; didn't like it
        - took atarax 1/2 10mg atarax pill at night really helped but gave me nightmares
        - tramadol worked great for back aches
        - generic claritin D worked best for me for calming bladder down and my panging
        - still taking cysto renew 4x a day and believe this and diet helped the most.
        - took dosage of cysto renew down to 2x a day and still ok

        Comment


        • #19
          I'm glad you are feeling better.


          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


          • #20



            There isn't anything controversial here about PFD --- we suggest being evaluated for PFD (pelvic floor dysfunction) by a physical therapist. PFD can be a significant part of IC pain in some IC patients. If anyone is looking for a physical therapist, if you scroll to the top of this page and click on the link to the front page, you will find a link to find specialists, which includes physical therapists.

            I'm glad you are doing well --- thank you for sharing.

            Donna
            Last edited by ICNDonna; 03-25-2021, 07:09 AM.

            Comment


            • #21
              Did I miss something here? I received this answer in my email and brought me to this thread I was going to finish reading it but it is gone . ..I have an appt with PT for PFD on April 20. The FOSFOMYCIN seemed to work for the UTI . . . . and wanted to hear about the Hiprex because I might want to start taking it again and have been reading about the wand, thank you.


              HI there... I had very successful results with hiprex. one year of agony and trying every treatment and medicine under the sun and then was fine in two weeks - combining with pelvic massage with a pelva wand. I was warned by Dr Malone that it might sting a bit at first, and it did. nothing terrible and then
              Diagnosed with IC sept. 2008, treatment then was hydrodistension, heparin instills for about 4 months and IC diet; symptoms lasted until sept 2009. Then only a couple of relapses overworking, stress etc. Then completely in remission until Jan. 2016 now pretty much symptom free as of mid august 2016.

              Symptoms: overall body aches, dryness feeling at vaginal opening, sitting makes it worse, standing makes it worse, stress makes it worse, no frequency or urgency, worse symptom is at night with panging of uretha/bladder.

              - went on diet, started Cysto Renew 3/31/16 and yoga at least twice a week.
              - tried uribel but really not for my symptoms since it seems it is for frequency and painful urination which I don't have
              - Ativan when needed to relax.
              - Elmiron only took for a couple of days; didn't like it
              - took atarax 1/2 10mg atarax pill at night really helped but gave me nightmares
              - tramadol worked great for back aches
              - generic claritin D worked best for me for calming bladder down and my panging
              - still taking cysto renew 4x a day and believe this and diet helped the most.
              - took dosage of cysto renew down to 2x a day and still ok

              Comment


              • #22
                On your question about are there two kinds of E Coli...there are about 2000 different strains of E Coli. Most are harmless, and because they are completely gene-mapped, they are used in research. They are sort of the bacterial equivalent of laboratory white mice. My son is the director of the E Coli Databank at Yale. It has over two thousand strains of gene-mapped E Coli bacteria that he ships all over the world for research. There is your bit of trivia for the day LOL.

                Comment


                • #23
                  well I had my Microgendx test results back and they did not find any other bacteria from my last UTI, I had another one 4/18 and sent them my urine. It came back with e coli just like all my other 10 test results, however they also found Prevotelia bivia and Gardnerella vaginalis (bacterial vaginosis), I have not had this before and don't have any symptoms, no odor itching or discharge and am not sexually active . . .. Not even sure what the symptoms are with those 2 things, although a little inflamed down there and a little burning. My dr. prescribed Flagyl I havent' taken it yet because my stomach is just not right from I don't know what maybe all the antibiotics I have taken over the past year. I have started on Garden of Life 40 bill, 16 strain probiotic and drinking marshmallow root tea and just started peppermint tea. I'll start the Flagyl next week. I am finding this odd.
                  Diagnosed with IC sept. 2008, treatment then was hydrodistension, heparin instills for about 4 months and IC diet; symptoms lasted until sept 2009. Then only a couple of relapses overworking, stress etc. Then completely in remission until Jan. 2016 now pretty much symptom free as of mid august 2016.

                  Symptoms: overall body aches, dryness feeling at vaginal opening, sitting makes it worse, standing makes it worse, stress makes it worse, no frequency or urgency, worse symptom is at night with panging of uretha/bladder.

                  - went on diet, started Cysto Renew 3/31/16 and yoga at least twice a week.
                  - tried uribel but really not for my symptoms since it seems it is for frequency and painful urination which I don't have
                  - Ativan when needed to relax.
                  - Elmiron only took for a couple of days; didn't like it
                  - took atarax 1/2 10mg atarax pill at night really helped but gave me nightmares
                  - tramadol worked great for back aches
                  - generic claritin D worked best for me for calming bladder down and my panging
                  - still taking cysto renew 4x a day and believe this and diet helped the most.
                  - took dosage of cysto renew down to 2x a day and still ok

                  Comment


                  • #24
                    There can also be side effects from over-the-counter remedies. I suggest starting them one at a time, with several days between additions, so if you do have any side effects, you'll know which one is the problem.

                    I have taken Flagyl without problems. For me, it worked fairly quickly --- you might want to consider taking it sooner.

                    Sending well 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


                    • #25
                      I was not trying to say I am taking the probiotics for the Prevotelia bivia and Gardnerella vaginalis (bacterial vaginosis). The probiotics are for my stomach and started 4/23. I have not had any problems. I am waiting until Monday to take flagyl for other reasons. Glad the flagyl will give me some hope.
                      Diagnosed with IC sept. 2008, treatment then was hydrodistension, heparin instills for about 4 months and IC diet; symptoms lasted until sept 2009. Then only a couple of relapses overworking, stress etc. Then completely in remission until Jan. 2016 now pretty much symptom free as of mid august 2016.

                      Symptoms: overall body aches, dryness feeling at vaginal opening, sitting makes it worse, standing makes it worse, stress makes it worse, no frequency or urgency, worse symptom is at night with panging of uretha/bladder.

                      - went on diet, started Cysto Renew 3/31/16 and yoga at least twice a week.
                      - tried uribel but really not for my symptoms since it seems it is for frequency and painful urination which I don't have
                      - Ativan when needed to relax.
                      - Elmiron only took for a couple of days; didn't like it
                      - took atarax 1/2 10mg atarax pill at night really helped but gave me nightmares
                      - tramadol worked great for back aches
                      - generic claritin D worked best for me for calming bladder down and my panging
                      - still taking cysto renew 4x a day and believe this and diet helped the most.
                      - took dosage of cysto renew down to 2x a day and still ok

                      Comment

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