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  • Bad Pain, Affects Sleep, Appetite, Feel Sick, Neg Culture?

    I am having a difficult time believing what is going on.

    I am on a strict IC diet. I normally feel burning and pain, but my last 2 days include severe burning, even on the azo, affecting my sleep, decreased appetite and generally feeling poorly.

    and get this.... the uro says after a 2-day culture, that it is negative.
    I told the receptionist ,"I don't believe it."

    How could I be so obviously ill, and it not show on my culture? This severe "flare" is something that has occurred to me before and I definitely feel like I need an antibiotic.

    BTW, the uro is giving me an antibiotic because there is no way I could get through this weekend without it. It has helped me through this kind of rough bout in the past.

    I'm going to see Dr. Chai June 24th and I can't wait to ask him all my questions, including "how could I feel so sick and have nothing wrong with me?"

    I always have symptoms, but when I'm this bad off, I KNOW there is something wrong. My entire body is responding to this hidden offender.

    Anyone else on this forum feel this bad, and have a negative culture?
    Diagnoses: Mast Cell Activation Syndrome (2012),Interstitial Cystitis (2003), Postural Orthostatic Tachycardia (2003), GERD (since ?), IBS (since ?), Low Blood Volume (2006), Small Intestine Bacterial Overgrowth (2007)

    Medicines:
    Claritin 10 mg/AM for MCAS and allergies
    Synthroid
    Aciphex 20 mg in PM for GERD
    Zantac 75 mg, one at night for MCAS and GERD
    Singulair 10 mg in AM, for MCAS & allergies
    Zyrtec 5 mg/PM for MCAS and allergies

    Non-Medicinal Helps:
    glucosamine 500mg/MSM 500mg 2 X/day
    I avoid foods that I react to in my esophagus, bowel and bladder, and I react to many things. It is an imperfect method, but it is all that I do at the moment.

    I can do all things through Christ which strengtheneth me. (Phillipians 4:13)

  • #2
    Before I started Elavil I had terrible pain a lot of the time. And then I would flare and it would get even worse but I have only EVER shown a positive culture once in my life and that was when I was in college. All of my other cultures have come back negative.

    I know that some people w/ IC get a lot of infections in addition to their IC but I am not one of them. I never get infections. I will do a culture if the uro's office suggests it if I'm in a bad flare but I know it's just a flare and not an infection and it never is an infection. I don't really want to take antibiotics if it's not an infection showing on a culture because then your body could become resistant to the antibiotics for when you actually do need them. I just ask for pain meds when I have a really bad flare to get through the painful symptoms.

    Hope you feel better soon.
    Christine



    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus

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    • #3
      I am one who gets very frequent infections and lots of positive cultures. I have had bad flares with negative ones. I have also had bad flares(or so I thought)that turned out to be kidney stones.

      Hugs,
      Barb
      (Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)

      [SIZE="1"]Proud mama of a gift named Lindsey who taught me through her autism what is important in life:angel:
      :angel: IC Angel Volunteer Coordinator :angel:
      :) Contact me via PM or e-mail if you would like to help
      I have learned all about life in 3 words: It goes on! :D--Robert Frost
      PCOS 7/85
      RSD 7/94 :headbang:
      Endometriosis 9/98 :toilet:
      Antiphospholipid antibody syndrome 9/99
      Kidney stones--too many to count
      Factor V Leiden mutation 10/02
      IC 6/03 :evilsmile
      Deep Venous Thrombosis and Cellulitis 12/05 :loco: DVT and Greenfield Placed 3/14/08
      "Spirit is an invisible force made visible in all of life"--Maya Angelou
      "Ohana means family--no one gets left behind or forgotten." Stitch[/SIZE][/SIZE][/SIZE]

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      • #4
        BabsRN

        What symptoms did you have in a flare that turned out to be stones?
        Diagnoses: Mast Cell Activation Syndrome (2012),Interstitial Cystitis (2003), Postural Orthostatic Tachycardia (2003), GERD (since ?), IBS (since ?), Low Blood Volume (2006), Small Intestine Bacterial Overgrowth (2007)

        Medicines:
        Claritin 10 mg/AM for MCAS and allergies
        Synthroid
        Aciphex 20 mg in PM for GERD
        Zantac 75 mg, one at night for MCAS and GERD
        Singulair 10 mg in AM, for MCAS & allergies
        Zyrtec 5 mg/PM for MCAS and allergies

        Non-Medicinal Helps:
        glucosamine 500mg/MSM 500mg 2 X/day
        I avoid foods that I react to in my esophagus, bowel and bladder, and I react to many things. It is an imperfect method, but it is all that I do at the moment.

        I can do all things through Christ which strengtheneth me. (Phillipians 4:13)

        Comment


        • #5
          I know people with IC can have very low grade infections that would not normally bother someone without IC, but for us it can really set off a flare. it did happen to me once, where the numbers from the culture weren't considered "significant", but in someone with IC - they were, so my doctor prescribed an antibiotic anyway.
          Kim

          Diagnosed August 2001

          Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


          Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

          I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

          *****************************

          “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

          “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

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