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Cu (Austin, Tx) on 06/08/2015
5 out of 5 stars

**Relief from Macrobid yet tests show no infection.

28 years old, diagnosed with Interstitial Cystitis in March 2015. Had horrible pain, frequency, etc. Tried bladder instillations that gave little to no relief, tried a very restrictive IC diet, went to 4 different Urologists, and tested negative for Ureaplasm and for any bacteria. Finally mid-April I couldn't handle the unrelenting pain and frequency (every 15 minutes). I tested positive on two home UTI tests and went to the Minute Clinic. Nurse prescribed Macrobid for 7 days - even though the tests showed no infection. Within 24 hours - I was basically cured - mild pain - ran 12 miles, felt 95% normal - no frequency. Then within 3 days of finishing the Macrobid the pain and symptoms came back. In May called my Urologist begging for more Macrobid. Within 3 days of starting the Macrobid - 100% relief. Then I had a cystoscopy that confirmed IC diagnosis. After taking Macrobid for 10 days, I feel normal - except of the soreness from the cystoscopy/slight hydrodistension.

Macrobid cured me and the hydro helped with my bladder capacity but none of my doctors will listen to me! It has been 3 weeks so far. I have gotten away with eating cheesecake, dried cherries, bananas, etc.

REPLY   5      

Replied By Nic (Boston) on 10/08/2015

You need to do a broth culture, but not any. The one that "brews" for 10 days. There are only a couple of labs in the country that do that. I always used United Medical Laboratories in West Virginia (I believe). Be careful with Macrobid. You likely have one of the bigger guns infections (enterecoccus), and macrobid only makes them stronger.

Look up Dr Paul Fugazzoto, but with interstitial cystitis in the search or you will get some dentist. He died a few years ago, but before that had a chance to help many-many women figure out they had a bacterial infection that simply didn't show up on a regular urine test. He passed on the culture method he used to the lab, but I believe it was actually used at the very beginning of urinanalysis, and then we switched to the simple test that showed no bacteria in your urine.

REPLY   1      

Replied By Jenn K (United States) on 11/11/2017

Same. I've been suffering from this horrible condition since 2012. Occasionally my urine culture comes back positive, but not always. One time I was prescribed Macrobid/Nitrofurantoin for a mild UTI and it made my IC symptoms disappear for a couple of months. It was amazing! A few months later my symptoms came back, but I tested negative for a UTI and a bunch of other stuff. At some point I got so sick of my IC symptoms and asked to try this antibiotic again even though I tested negative for UTI. Within a few days my symptoms were gone! So yeah, this medication definitely works but then the symptoms always seem to come back within 2-6 months, so it doesn't seem to be a long term solution.

Does anyone know why this medication works for IC? Most of the doctors I've seen can't explain it. Some of them were actually pretty surprised when I told them it makes my symptoms go away.

REPLY   2      

Replied By Mama To Many (Tn) on 11/11/2017

Dear Jen,

Just today I was researching Mullein Root Tincture for a friend and noticed that it said it is sometimes used for Interstitial Cystitis. Mullein root is difficult to find. I have bought it from beneficial botanicals and made my own from mullein root in my yard. I have used it for my joints with success.

A dose for Mullein Root Tincture are 5-15 drops.

I also wonder if frankincense essential oil, a quality one (Hopewell oils are my favorite) would help. A drop or two applied to the abdomen has helped me before with a UTI and also with ovarian cysts.

Just a couple of things I would try myself if I were dealing with IC.

~Mama to Many~

REPLY   6