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When I am on an antibiotic...my IC symptoms are minimal. I don't want to stop them!!

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  • When I am on an antibiotic...my IC symptoms are minimal. I don't want to stop them!!


    Wow...what a year this has been! I am on my 4th round of antibiotics for BV. I have never had it before in my life until now, and it just keeps coming back!! Anyway, coincidentally my IC symptoms of frequency and pelvic pain are 90% better. Other than some pesky tingling in my vagina and tailbone (which is slowly improving), I feel almost normal. It makes me want to stay on antibiotics forever!! Of course, I know this is not realistic. However, I was wondering if anyone stays on a low dose antibiotic a few days a week to keep their symptoms at bay?? I am going to call my IC doctor to get his opinion as well.

    Hugs to all!!

  • #2
    Re: When I am on an antibiotic...my IC symptoms are minimal. I don't want to stop the

    Antibiotics are helping with inflammation, that is why. Though my case, antibiotics make my bladder much worse.
    Anyhow, I have BV for 3 years now, and antibiotics did zero to fight against it. Trust me, they will not help.

    1. Stop all white bread and sweets
    2. Vaginal lactobacillus!! (+oral). That is practically only way to restore vaginal balance to fight with BV. Also, only wash there with warm water, no soap! And wash every time after toilet, and use soft towel to tap.

    3. In Germany we have vaginal pills called Vulniphan, natural herbal stuff. That was the one that has helped me most next to lactobacillus!

    4. Coconut oil vaginally

    I am sorry to say, it is long long way, it will cost you a lot and you need to be careful to get better. Even after 3 years I am not BV free, it always returns (but not so strong) after period. But for sure antibiotics did not help much. That is why my gyno refused to write them too many times as well. (she did first, but when did not help, we switsched to vaginal pills mentioned before).

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    • #3
      Re: When I am on an antibiotic...my IC symptoms are minimal. I don't want to stop the

      Luckily, she told me mine was not bad. My symptoms from the BV are minimal, but I can tell when it starts back up. I am about to go online to hunt for the vaginal lactobacillus! Did the vaginal lactobacillus flare you?

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      • #4
        Re: When I am on an antibiotic...my IC symptoms are minimal. I don't want to stop the

        No, they did not flare, they have actually made my bladder always better! Just now I found I probably had too much sweets today and added Vulniphan capsule, and bladder automatically feels more relaxed as well.

        Hope it works you same good!

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        • #5
          Re: When I am on an antibiotic...my IC symptoms are minimal. I don't want to stop the

          Thank you so much for all your advice! I hope I can find it on the internet! I really appreciate your help.

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          • #6
            Re: When I am on an antibiotic...my IC symptoms are minimal. I don't want to stop the

            Some antibiotics have anti-inflammatory qualities --- which is why we can feel better so quickly when we have to take them. Sometimes I wish I could take them full time, but it's not practical for me.

            Warm hugs,
            Donna
            Stay safe


            Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
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            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.

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            • #7
              Re: When I am on an antibiotic...my IC symptoms are minimal. I don't want to stop the

              Donna...I wish I could too. I haven't been pain free in over six months until I started the antibiotics. I kept thinking my Elmiron REALLY kicked in all at once, but I am really attributing this mainly to the antibiotics. I will be finished with this round in 7 days. I am curious to see what will happen next. I am praying my bladder will behave!!

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              • #8
                Re: When I am on an antibiotic...my IC symptoms are minimal. I don't want to stop the

                Yes the AB will be acting as an anti inflammatory, and they will be helping the BV so reducing secondary issues there too. There are some people that do stay on AB for a very long time. I was one of them, and it really saved me from going completely batty. I've been off them all now for almost a year and still sorting my gut out from the atomic bomb I hit it with for so long. I unfortunately got clostridium difficile from them and had to start to wean off of them. But that's rare and I hear some girls stay on the milder kinds of AB for years as a prophylactic. Those being trimethoprim and macrodantin, which are quite urinary specific.
                Speak to your doctor and see what you can arrange. There are risks but you also sometimes just need to get through the day, so who is anyone to judge!
                Vaginal lactobacillus is a good idea, I actually put the lactobacillus oral powder into a gelatine capsule and insert that way. I still flare from the oral ones yet am OK to have them inserted. Who knows if it works:-)???
                UTI 3/2015
                IC ,PFD
                prescribed meds: Endep 60mg, Elmiron 400mg, BC. Enablex 7.5mg.

                Supplements: Chitomur peptide, colostrum, Echinacea, liver detox swisse, calcium citrate, glucosamine, Psyllium Husk.

                Daily diet: Breakkie- oats with chia seeds and no fat milk. Post workout-turkey breast with mixed veggies. Lunch-raw green soup with rye roll and handful of peanuts/almonds. Dinner- changes but meat and veg. Dessert-banana and sugar free custard (homemade) or banana and apple bake with almonds cinnamon and honey with a dollop of coconut cream.


                Tried: tramadol, cystoprotek, multi right, diazepam, vesicare, Ditropan, mirabegron, Flomax, lyrica, progesterone.

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                • #9
                  Re: When I am on an antibiotic...my IC symptoms are minimal. I don't want to stop the

                  Aaarrrggghhh,
                  I am definitely going to mention this to my doctor. Also, what brand oral lactobacillus powder do you use? I already have some gelatin capsules I can put them into. I also take 3 Femdophilus a day. And lastly, I have diflucan to take. I don't want a yeast infection on top of this (although my doc did see a tiny bit of yeast under the microscope). She felt like I could easily get that under control.

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                  • #10
                    Re: When I am on an antibiotic...my IC symptoms are minimal. I don't want to stop the

                    They are living well brand. They are low histamine ones which I find the most tolerable on my bladder . Seems to dissolve fairly well so not too messy.
                    UTI 3/2015
                    IC ,PFD
                    prescribed meds: Endep 60mg, Elmiron 400mg, BC. Enablex 7.5mg.

                    Supplements: Chitomur peptide, colostrum, Echinacea, liver detox swisse, calcium citrate, glucosamine, Psyllium Husk.

                    Daily diet: Breakkie- oats with chia seeds and no fat milk. Post workout-turkey breast with mixed veggies. Lunch-raw green soup with rye roll and handful of peanuts/almonds. Dinner- changes but meat and veg. Dessert-banana and sugar free custard (homemade) or banana and apple bake with almonds cinnamon and honey with a dollop of coconut cream.


                    Tried: tramadol, cystoprotek, multi right, diazepam, vesicare, Ditropan, mirabegron, Flomax, lyrica, progesterone.

                    Comment


                    • #11
                      Re: When I am on an antibiotic...my IC symptoms are minimal. I don't want to stop the

                      Thanks friend!!

                      Comment


                      • #12
                        Re: When I am on an antibiotic...my IC symptoms are minimal. I don't want to stop the

                        I wish I could help you but I haven't taken an antibiotic in at least 20 years (way before I had IC and not for a UTI). I sometimes wish I could try taking one during a flare to see if it would help. If it helps the inflammation, and that makes you feel better, it might be nice to have during a flare. I know antibiotics aren't recommended to take, but when you're suffering from an IC flare, you'll do just about anything to feel normal again.

                        I hope you continue to feel better.
                        Jane
                        Diagnosed 1/7/14 via cysto/hydro

                        Current Treatment:
                        10 mg amitriptyline, DH Aloe Vera

                        Used During Flares:
                        Uribel, extra DH Aloe Vera, Klonopin and Tramadol (as needed)

                        Practicing bladder training and stress control (hot baths, pelvic stretching)
                        Recently tried PT, do not appear to have PFD

                        Things that have not helped in the past:
                        Oxybutynin, Vesicare, Pyridium, Myrbetriq, Vagifem

                        Also have migraines and IBS

                        Comment


                        • #13
                          Re: When I am on an antibiotic...my IC symptoms are minimal. I don't want to stop the

                          Jane, antibiotics helped me actually very few in the beginning and now I actually flare from them and get pain! So I try not to take them any more, only when really necessary.

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                          • #14
                            Re: When I am on an antibiotic...my IC symptoms are minimal. I don't want to stop the

                            Hi ladies I had to chime in on this one.

                            I've had severe, refractory IC for 15 years and am now on my 2nd round of Disability. I've been on long-term antibiotics twice in my IC journey and both times they helped my pain greatly. The first time, years ago I took Doxycycline daily for several months. This last year, I became bed-ridden from IC so I've been on long-term steroids for about 2 years (we're now weaning me down and I'm down to 5mg a day...woo hoo!), and daily antibiotics for about 5 months. I take 500-2000 mg (that number is not a typ-o!) of generic Keflex per day, depending on my pain level. I'm just now getting to the point where I can go 2-3 days without any antibiotic and have pain control.

                            Here's the deal...some antibiotics have a MAJOR anti-inflammatory factor and that is why they help some of us with IC pain so well! Of course, they can all have side effects. Weirdly, I've had zero side effects of such high, massive doses of Keflex for so long. I can even take it on an empty stomach. It's weird!

                            Is this an ideal therapy? NO! But, my IC Specialists are handling my treatment as a "quality of life" issue at this point. I was REALLY, REALLY bad and could hardly walk. I live alone and it was/is simply not ok for me to be bed-ridden for so long. I was winding up in the ER constantly from severe pain. I was in so much pain I would sleep in front of my toilet on the bathroom floor. I would then half-asleep sit on the toilet most of the night with frequency and throw up into a small trash can with nausea from such long-term pain. I kept a small 5 gallon camping toilet I ordered from Amazon (lined with a trash bag and kitty litter...yes I was using KITTY LITTER TO PEE LOL!!!) beside my bed for times I was too sick to walk to the bathroom. IT WAS HORRIFIC!!

                            Such a low point in my IC journey.

                            I'm very grateful for the pain control. I was literally going crazy from such long-term severe pain and was no longer even rational. I thank God that my doctors care enough to get that under control FIRST so we can then work on treating my IC!!

                            My IC Specialists call it "antibiotic therapy." They don't know why it helps so much other than it greatly reduces inflammation. They said, it's just one of those "unknowns of IC." I really don't care, it saves my life some days. Since I've tolerated antibiotic therapy well both times, maybe that is why my specialists are ok with it. I don't know...each patient is different so they say!

                            Oh and I also started getting back-to-back UTI's out of nowhere last Fall which was never normal for me with IC. It turned into a Kidney infection. UGH! The generic Keflex keeps that at bay as well...thankfully!!

                            This is just my antibiotic therapy journey. I have this therapy listed in my signature line as one of my treatments, below. Please know it is considered one of the last resorts to get severe inflammation under control.

                            I hope it helps shed some light.
                            Last edited by jeanniebug; 03-23-2017, 03:48 PM.
                            Jeannie
                            "She stood in the storm, and when the wind did not blow her way, she adjusted her sails." -Unkown

                            IBS/Endometriosis/Prolasped Uterus/CFS, ME/Fibromyalgia/Refractory IC/Celiac Disease/Autonomic Nervous System Dysfunction (Immune System issues) B12, Vit D deficiencies

                            Many surgeries over the years, mainly: Total hysterectomy/Gallbladder & Thyroid removed

                            Treatments: Tried all except Interstim, Botox injections and bladder removal. I've never been in remission.

                            Daily-Prednisone steroid down to 3mg long-term, Demerol 50mg, Diazepam 2mg
                            As needed-Home TENS unit, AZO Standard, Marshmallow Root Capsules, D Mannose powder, Prelief. STRICT IC DIET or I'm bed ridden. I'm under the care of a Pain Management Clinic.

                            Was on SS Disability for IC 2004-2006. Back to work 10 years. Annnnd-My bod gave out. Back on Disability as of Aug 2016. WE NEED A CURE!!

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                            • #15
                              Re: When I am on an antibiotic...my IC symptoms are minimal. I don't want to stop the

                              Jeannie,
                              Thank you for sharing your journey and your experience with antibiotics. I know you are more than grateful for your doctor who seems very open-minded and compassionate enough to do what is needed to increase the quality of your life. It really is about that, isn't it? I am so sorry for the horrible hurdles you have had to get over.

                              I was so afraid to take anything when first diagnosed...but I was suffering needlessly. I decided that I have to do what I can to increase the quality of my life. I am not thrilled about having to take Elmiron, antihistamines, Ativan and Elavil, but will continue to do so. It allows me to work and have a somewhat normal life. I am no longer on the antibiotics, but certainly wouldn't hesitate if I needed them. I take a pain pill if needed, but certainly don't abuse them. We have to do what works for us. I pray for all IC patients. We are a tough bunch!! I hope your days get better and better!

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