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Had to stop long-term antibiotic therapy (2nd time around)

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  • Had to stop long-term antibiotic therapy (2nd time around)

    Hi Everyone,

    I've had IC for 15 years and have done long-term antibiotic therapy twice. The first time was for about a year on Doxycycline, 1 per day for about a year. It worked great for pain control (and to stave off UTI/Kidney infections) but simply quit working eventually. Doxycycline treatment was about 13 years ago.

    This last round was generic Keflex (Cephalexin), 2000 mg per day for 8 months. A very high dose, but it worked.

    I had ZERO side effects from this one, and it greatly helped my pain/inflammation. I'd had a Kidney infection for several months that they could not get under control, until I was on this med. They kept me on it for both pain control/inflammation and to keep infections at bay.

    One day out of nowhere (2 weeks ago), I developed diarrhea. The doctors had me stop it immediately. The doctors had told me many times there's an infection called Clostridium Difficile ("C-Diff" for short) that can be brought on by antibiotics. This infection is what my doctors call A Very Bad Thing. It can be fatal even in mild cases.

    Luckily it doesn't appear that I have C-Diff, but it's a very real risk. At the time, I had become bed-ridden for almost a year, so we had to weigh risks vs quality of life.

    I've replaced antibiotic therapy with 1 tsp DMannose powder every 2-3 waking hours, and seem to be none worse for the wear. It's actually a relief to be off the antibiotics, because such long-term use did worry me, in the back of my mind.

    I am 200% in support of it for severe, refractory IC pain and especially chronic bladder/kidney infections. But it must be used with caution and under the close supervision of a doctor.

    Antibiotics help IC pain so much because antibiotics can GREATLY reduce inflammation. It really doesn't mean there's some "hidden" infection. My doctors told me...alot of people don't realize how much antibiotics reduce inflammation because they're usually taking them for an infection, not for pain.

    I'm hoping to not have to use them as a tool for pain again in the future. C Diff has treatments but can be very dangerous.

    Just my 2 cents, for anyone who's pondered this treatment option.
    "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!!

  • #2
    Re: Had to stop long-term antibiotic therapy (2nd time around)

    Thank you for sharing your experience. Yes, at least some antibiotics can help with inflammation, even if there's no infection present --- that's why we can feel so much better after a short time taking them.

    I hope D-Mannose will help you to avoid any infection invasions.

    Stay safe

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