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  • New To IC

    I was being treated for what I thought was UTI's for almost 3 years until my doctor told me I had IC in Nov. 2006. Prior to November, I was getting flare ups and even though my urine cultures always came back negative, I was treated with a percription of antibiotics. Looking back, I'm confused as to why the antibiotics actually relieved all my "IC" symtoms considering the fact that I never really had a UTI.
    Last edited by Shirl; 03-25-2007, 10:17 AM.

  • #2
    HI! Welcome!
    When I have flare ups I still take Cipro 500mg for a few days to get over it. I go to an IC specialist and he told me that some people respond to antibiotics for flares and some don't. I guess I'm one of the lucky ones.....if it helps you I'd say you are a lucky one also!
    I'm sorry that you have IC but at least now you know. Have you tried the IC diet? It really helps. Are you on any bladder meds yet? Elmiron, Elavil, Azo??
    Write if you need to chat with someone.......we're all here often. Roxie

    Double Spinal Cord Stimulator surgery 8/09
    Unsuccessful MiniArc sling surgery 12/07
    Dx'd Hypothyroid
    Dx'd Chronic Axonal Neuropathy & Myopathy
    June 2007
    Dx'd IC May 2006 (after suffering for 25+ yrs!)
    First Cysto 1979
    First Hydro 1981 (Many treatments since then!)
    Collagin"Durasphere" injections for urethra
    Gall bladder surgery Aug. 2004
    Gastric Bypass Dec. 2004
    Dx'd: Barrett's Esphogus July 2004
    Dx'd: Vaginal Atrophy 2005
    Bladder surgery 2000
    Dx'd: IBS 2000
    Hysterectomy (fibroids) 1999
    Laminectomy 1989
    Dx'd: Degerative Disk Disorder 1989

    For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
    I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra's amazing stuff!!:woohoo:


    • #3
      Thanks so much! I have been on Elmiron since Nov. (3x's a day), I was taking Cipro & Macro prior to the Elmiron and had very positive results with both. I've had a flare up for the last 4 days, not sure why. This is only my second one since November 2006. I've eliminated all the "most common" foods/drinks that are linked to IC.


      • #4
        Hello and

        The IC patient handbook has alot of good info in it..
        Heres the link

        If you need anything just ask

        ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!

        Link to Patient Handbook:

        Diet Reference Sheet:

        Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

        Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

        Meds I have Tried:
        Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
        Lexapro< Bad reaction to this med!
        Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

        Dx With IC in Nov 2006 with Hydro/Cysto
        Hydro/Cysto Caused Bladder to Rupture.

        Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.

        ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.


        • #5
          to the ICN I went through many years with the diagnosis of reacurring UTI's prior my IC diagnosis...I didn't know what a culture was at the time so I have no idea if I ever had bacteria or not but I do think that antibiotics can have an anti inflammatory affect...that is what we use them for in Ulcerative Colitis.

          Anyway, while I had the reacurrent infections diagnosis I told my urologist at that time that I felt cranberries were making me worse...he told me not possible...yet that should have been sign that I actually had IC. Regardless...reacurring infections can also do some dammage to the bladder and may be why you now have IC. Hard to know if you had actual bacteria before without records. Just want you to know that you are not the only one that saught treatment...had a urologist, and was given the diagnosis of reacurring UTI's when there was more going on.

 antibiotic overview this link is about using antibiotics with IC patients and gives a broud overview that may answer some questions better
          Faith, Hope, and Love,

          I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back!

          IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
          or find me on facebook
          Be the Miracle! & Pay it Forward!

          [email protected] please contact me...I am here to help!