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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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  • #16
    Re: When I am on an antibiotic...my IC symptoms are minimal. I don't want to stop the

    Thank you for the sweet message! You hit the nail on the head...it literally does come down to quality of life at certain stages. I am sure some might be horrified at my treatments...such as steroids and antibiotics. However, I've seen some of the top IC docs in the U.S. over the years. They have told me, I'm not alone in steroids and antibiotics for worst pain patients. It almost seems like a dirty little secret that few select IC patients are put on steroids and/or antibiotics to control pain.

    I (and my doctors) went into it with very open discussions well aware of the possible severe side effects of such meds. I remember one doctor telling me "listen, you...6 feet under...does nobody any good...we are going to treat your pain." I cried in gratitude many times. They (and I) knew I could not live with such pain much longer. I remember telling that doctor that I felt like I was on a torture rack 24/7...only I was never going to be let off the rack or die, and it was inhumane. Oy, such a low point!!!!!

    The good news is, I seem to be very slowly able to handle some days without antibiotics lately, and am very slowly weaning off the steroid. I as well take a pain med when needed, but am not addicted and take it selectively under the care of a Pain Management Clinic.

    I have no problem laying it all out there on these boards if it helps even one person, or even a doctor who might read it. I'm grateful I could tolerate such treatment, but well aware it could have had/could have serious side effects.

    I did not care at that point. I told my doctors "if you told me I would have one year of no pain on this treatment then die, I will do it. Just give me some tiny glimmer of a life back."

    Pretty dramatic, eh? But hey, it takes what it takes. I think we are ALL very brave and strong women. I hope for better days for you as well, and all of us who suffer from this mysterious illness. Keep your head up. Hope is the key and so important!
    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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    • #17
      Re: When I am on an antibiotic...my IC symptoms are minimal. I don't want to stop the

      I was recently treated with 7 days of Keflex for a tooth implant. My IC which has been flaring for about 6 months, got immediately better. Still feeling good 3 weeks later. In my heart, I really believe there is an infectious component to IC. I follow the IC diet diligently and do whatever I can to avoid triggers. But sometimes, that is not enough. I have been just thrilled with the response to Keflex. I always remember that gastric ulcers were considered to be stress and diet induced until someone finally isolated Helicobacter pylori. Now gastric ulcers are routinely treated with antibiotics. I sincerely hope that researchers keep looking for a microbial factor as well as everything else.

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      • #18
        Re: When I am on an antibiotic...my IC symptoms are minimal. I don't want to stop the

        akcarvill,

        Your point about gastric ulcers is very interesting. I agree with you. I've had IC 15 years & have always felt it's some infection they haven't identified or found yet.

        I especially believe this theory because in my worst IC flares, the lymph nodes in my neck & under my arms swell & ache. My entire body hurts along w/the bladder, I'll be extremely exhausted, & feel flu-like all over. Sometimes I even run a low fever w/nausea. It's awful.

        I had to stop the Keflex therapy about 2 months ago because I suddenly developed diarrhea.

        But for 7 months when I was taking 500 to 2000mg Keflex per day, it helped my bladder, inflammation in general, & bladder spasms a TON.

        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!!

        Comment


        • #19
          Re: When I am on an antibiotic...my IC symptoms are minimal. I don't want to stop the

          Originally posted by akcarvill View Post
          I was recently treated with 7 days of Keflex for a tooth implant. My IC which has been flaring for about 6 months, got immediately better. Still feeling good 3 weeks later. In my heart, I really believe there is an infectious component to IC. I follow the IC diet diligently and do whatever I can to avoid triggers. But sometimes, that is not enough. I have been just thrilled with the response to Keflex. I always remember that gastric ulcers were considered to be stress and diet induced until someone finally isolated Helicobacter pylori. Now gastric ulcers are routinely treated with antibiotics. I sincerely hope that researchers keep looking for a microbial factor as well as everything else.
          1000% agree!!

          Comment


          • #20
            Re: When I am on an antibiotic...my IC symptoms are minimal. I don't want to stop the

            Does anyone know if any IC bladders have ever been donated to science? And if so what they found?

            I sometimes wonder if I donated mine, & they went through it layer by layer, what freaky facts they may discover.
            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!!

            Comment


            • #21
              Re: When I am on an antibiotic...my IC symptoms are minimal. I don't want to stop the

              Originally posted by akcarvill View Post
              I was recently treated with 7 days of Keflex for a tooth implant. My IC which has been flaring for about 6 months, got immediately better. Still feeling good 3 weeks later. In my heart, I really believe there is an infectious component to IC. I follow the IC diet diligently and do whatever I can to avoid triggers. But sometimes, that is not enough. I have been just thrilled with the response to Keflex. I always remember that gastric ulcers were considered to be stress and diet induced until someone finally isolated Helicobacter pylori. Now gastric ulcers are routinely treated with antibiotics. I sincerely hope that researchers keep looking for a microbial factor as well as everything else.
              It can be frustrating and I know we want to belief that because the anti-biotics help there must be an infection. It's been proven that for the large majority this is not the case. The anti-inflammatory properties of anti-biotics are very powerful-so much so they have studied using them soley for inflammation treatment. They are much more powerful than over the counter ibuprofen or Aleve.

              Comment


              • #22
                Re: When I am on an antibiotic...my IC symptoms are minimal. I don't want to stop the

                Originally posted by Martinb View Post
                It can be frustrating and I know we want to belief that because the anti-biotics help there must be an infection. It's been proven that for the large majority this is not the case. The anti-inflammatory properties of anti-biotics are very powerful-so much so they have studied using them soley for inflammation treatment. They are much more powerful than over the counter ibuprofen or Aleve.
                Martinb that's exactly how my doctors have explained antibiotic therapy for IC to me...that the anti-inflammatory properties of antibiotics are very very powerful. It's frustrating when something feels like an infection, and looks like an infection.....but it's not an infection. Fun with IC!
                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!!

                Comment

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