Comment from Kate King

AnonymousSupportIndividual
Summary: The commenter, a patient who suffered severe, long-term disabilities after taking the antibiotic Cipro, supports the proposed action to regulate fluoroquinolone dispensing. She argues that physicians need mandatory retraining and that informed consent should be required for patients before these drugs are prescribed.
I was prescribed Cipro, a fluoroquinolone antibiotic, to treat diverticulitis in 2017. After taking just four pills, I knew something was very wrong. I called my clinic's after-hours nurse line, and explained that Cipro was making me feel worse than the diverticulitis symptoms it was supposedly treating. I was told to either keep taking Cipro orally or come to the ER and get it by IV. I "obeyed" and took my 5th pill. The next thing I knew my entire body felt like it had been electrocuted, and I wound up in the ER anyway. Thankfully, the ER doctor didn't give me more by IV, but he did send me home with another fluoroquinolone, Avelox. I never took it. I googled fluoroquinolones and realized I was probably already experiencing the horrific side effects this antibiotic class is known for. Why didn't either the nurse I spoke with or the ER physician I saw recognize this? Fast forward to a year later. That entire year, I was bedridden. I lost my ability to walk. I could barely make it across my bedroom to an adjacent bathroom without a walker. I needed a wheel chair to go anywhere else. We live in a two-story home, and I could no longer use the stairs. I had unrelenting insomnia (and still do). I had psychiatric effects. The doctors I was seeing wrote me off as a mental health case and refused to believe Cipro or fluoroquinolone toxicity were in any way connected to my symptoms. I had horrible nerve pain, and I would cover my body in ice packs to try and lessen this excruciating pain. I literally spent well over a year in bed. My husband took an early retirement to care for me, years earlier than planned. We took a huge hit, financially. The hardest part of this experience was that nearly all the doctors I saw--internal medicine, neurology, gastroenterology--refused to believe me or believe that Cipro could cause my symptoms. I eventually found a functional medicine doctor and a new primary care doctor (who took the time to read up on Cipro and placed a personal call to Beatrice Golomb, MD, at UC San Diego). Dr. Golomb was Investigating Fluoroquinolone-Associated Disability (FQAD) and Gulf War illness, focusing on oxidative stress and cell energy impairment. I spent money I didn't have just to see the functional medicine doctor. She, along with my new primary care doctor, utilized the expertise they gained from Dr. Golomb to try and treat my oxidative stress and mitochondrial dysfunction. I am one of the lucky ones: After about 14 months, I began improving, albeit very, very slowly. I regained my ability to walk, my nerve pain lessened, and I regained perhaps 80% of my former energy level. I still suffer from fatigue, brain fog, memory loss, hair loss, and disabling insomnia. My husband and I lost years of his salary with his unplanned retirement because, at my worst, I required 24/7 care. I strongly encourage (demand!) that physicians be retrained on the risks fluoroquinolones can pose, that physicians be required to sign an informed consent before prescribing fluoroquinolones, and that patients be required to sign an informed consent acknowledging that their physicians have explained the risks of these drugs before taking them. I still wonder: When I initially called my clinic's after-hours line, what if I had been told (as I should have been) to STOP taking Cipro? One pill later, and I had the sensation so many patients who develop fluoroquinolone toxicity describe: A bomb going off in my body. And what if I hadn't been prescribed Cipro in the first place? My diverticulitis was MILD. Watchful waiting was the only "medicine" I required. It's time to educate our health professionals and regulate the dispensing of these disabling antibiotics. Fluoroquinolone toxicity can result in fluoroquinolone-associated disability, which for far too many patients, is PERMANENT. And because up until October of 2025 there was no diagnostic code to even track how many patients developed fluoroqinolone toxicity, so it is probably far more common than anyone realizes. How many of us were written off as mentally ill or told we were suffering from depression, fibromyalgia, or chronic fatigue syndrome? Fluoroquinolones destroy lives, unnecessarily. Please act now! Thank you very much for your help.

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