Tell Us Your Story
- Andrea MacDonald
“At 51, I was truly living my best life. I was happily married with a wonderful 15 year old son. I was closing in on early retirement, with a celebration trip planned to Portugal.
In the previous year, though, I had developed a nagging cough. A previous antibiotic failed so my doctor prescribed me Moxifloxacin. I had taken it in 2017, so reassured myself I'd be fine, even though my gut was screaming at me not to take it.
Over the next days, fleeting symptoms occured (ringing in ears, tingling fingers, nightmares) but the pharmacist only warned me to watch for Achilles problems. I stopped on day 9 of 14, as my husband noticed a change in my demeanor.
Two days later, I went to stand up & my legs felt weak. I went to bed praying this would be a fleeting symptom as well. That night, it felt like a bomb went off in my body. I now know this to be oxidative stress. Words will never be able to adequately convey how terrifying that night, nor the next 12 months would be.
I watched as seemingly every part of my body and mind self destructed. I suffered fifty plus symptoms, including muscle twitching, body-wide tendonitis, neuropathy, CNS disregulation, weakness, burning skin, weight loss, gut issues, joint popping, crepitus, coccydynia, on & on & on!! I cried every day for a year. At my lowest, I begged for death.
My doctor was at a complete loss on how to help me. You quickly find out there is no magic pill to fix Fluoroquinolone Toxicity and the havoc it causes.
I watched from the couch as everyone else's life moved forward. I felt trapped in a body I no longer knew or trusted, one in constant pain. You lose your sense of identity. The suicidal ideation, from physical pain and loss of self, was so bad, I had to start counseling (this from a woman who, prior to 9 pills, was on top of the world).
You quickly discover who your true family & friends are. Some are staunch supporters, while others think you are exaggerating. Without 4 key people in my life, I truly don't believe I'd still be here.
Here I am, now 14 months in. I am on nerve pain medication, maybe for life. I still experience substantial pain everyday and it appears the toxicity also set off arthritis in me, which I never had before. I can walk farther, though, and for that I am thankful. My dancing, hiking, traveling, etc are all still on hold. Much of my time is spent close to home, with fear of the pain kicking in. I cry less lately, which I also believe shows progress.
Each day is a fight to reclaim more of the life I once knew. I hold on to hope, that with time, more healing will happen. But I've had to face a painful truth: I will never be 100 percent again. That's "a hard pill to swallow", but the past can't be undone.
What I can do is everything in my power to continue to heal. And I will spend the rest of my days warning others about the risks of this devastating drug. I'm sharing my story to prevent another person from going through this suffering. Ask for an alternative antibiotic!!”
- Talia Smith
“My name is Talia Smith. Five months after taking three pills of Ciprofloxacin in 2021 for a simple, uncomplicated UTI, I lost over half my body weight and was admitted to hospice at 60 pounds. It is a miracle that I am still alive to tell my story.
I trusted my Doctor and asked if there was anything I needed to be aware of before I took this medication. I was told, “NO, this medication is safe and effective and we use it all the time for UTIs.” I did not know at the time, that Ciprofloxacin, and all other fluoroquinolone antibiotics, carry 7 Black Box Warnings and the FDA’s guidelines are that they should be used as last resort only, when no other treatment options are available, due to their permanent and disabling side effects. I became aware of one of the Black Box Warnings when I went to the ER, unable to walk, after 3 dosages. And thus, my downward spiral began.
I went from being healthy and only going to the Doctors for my annual check-ups to becoming a frequent flyer in the hospital. I was gaslit by most Doctors, not taken seriously and abandoned with multiple refusals of a feeding tube to help me eat, as I was having reactions to food and trouble swallowing (I was even choking on my own saliva). This is why I was unable to eat or drink for a month before entering Hospice.
To this day, I am totally disabled, on Pallative Care and require 24/7 assistance for my survival. I am bed bound, in a wheelchair and suffer from debilitating pain, muscle wasting peripheral neuropathy, tremors, and many other health ailments.
I lost everything; my health, independence, my career and most importantly, my quality of life.
If I had informed consent, then my Doctor would have had to make me aware of the Black Box Warnings and the disabling side effects. And in that case, I would have never taken the fluoroquinolone antibiotic that permanently disabled me and ruined my life.”
- Karen Faulds
“I was floxed by my respiratory consultant at a large London NHS Trust. I didn’t even have a proven infection, all cultures negative, but a bit of a cough and very slight wheeze. She decided not to explore safer treatment options, but to go straight to Levofloxacin, because as she told me, ’we give them to everyone.’ Even people like me in the high risk group, over 60 and taking steroids for lung inflammation. The doctor didn’t warn me about potential adverse reactions, nor did the pharmacy. I later found out she wasn’t aware of any contraindications, so the MHRA warning wasn’t helpful.
The reaction was very quick, after just 3 days, first one leg, then the other. Over a few weeks the initial very acute reaction improved so I could walk, but not very far or very quickly. Over the next few weeks and months the reaction spread to my shoulders, arms and hands.
Now, 18 months later, the worst effects are in my rotator cuffs, knees, Achilles tendons and my ankles. If I do too much my tendons fizz and burn, and too much is just going upstairs, getting showered and doing my hair, or pushing my grandson on a swing for a couple of minutes. I can’t cook or do the housework, and my dogs haven’t been walked for 18 months.
The Hospital says the prescription was correct, even though I wasn’t warned, and had my right to informed consent taken away. I was slow to realise what had happened to me and felt completely alone until I found the Fluoroquinolone Toxicity support groups, and I am so grateful that they are there, while at the same time so sad that they are needed.”