When I filled the prescription, the pharmacist warned me about the tendon issues with Levaquin, especially since I was over 60, and on prednisone. He said I should drink plenty of water and I should be fine. The scrip came with a 7-page patient medication guide. On the first page was “What is the most important thing I need to know about Levaquin?” It included the warning about tendon issues.
I called the doctor back and said I didn’t think I should take the drug.
She said they use it this way all the time and no one ever really has a problem. So I took the first pill and went to bed.
My Levaquin Reaction
I woke up 4 hours after taking the first pill, with tremors, ringing in my ears that sounded like I was in a tent full of cicadas, and audial hallucinations that sounded like the soundtrack to Rosemary/s Baby (the evil Roman chanting). I was also seeing things out of the corner of my eyes. I called the doctor the next day to report the symptoms.
She said, “Oh it can’t be the Levaquin, it must be the prednisone. It can make you jumpy.”
I replied that I have been taking prednisone all my life, and never had anything like this. I took the second pill that night, anyway.
The side effects got worse and I finally read all 7 pages of the patient guide. I realized that I was suffering the CNS and peripheral neuropathy issues, and decided I would quit the Levaquin. I called the doctor the next morning and she wanted to give me another antibiotic.
I said “but I don’t actually have an infection, right?”
She said, “yes.”
I said no more antibiotics.
The Next Few Weeks Post Levaquin Toxicity
The audial and visual hallucinations went away after two days, but the tinnitus and the tremors remain to this day.
Eight days later I left for a long-planned trip to Florida for wildlife photography. I woke up in the middle of the night in a hotel room 1100 miles from home with my whole body on fire, pain in my neck, shoulders, elbows, wrists, hips, knees and ankles feeling like they had hot pokers sticking through. I had burning electrical sensations in my hands and feet, a ring of electricity running around the top of my head. I could barely walk. My thighs felt like I had tried to run a marathon with no warm up and that they were going to collapse under me at any moment. Prior to this, I was used to hiking all day carrying 25 lbs of photo equipment through forests, swamps, etc.
Post Levaquin Insomnia and Sleepwalking
I won’t even try to describe the next 10 days in Florida before I could get home, but needless to say I did not do a lot of wildlife photography that trip. I also developed insomnia. I could not sleep more than 1-2 hours at a time, and I would have very vivid dreams. I found myself sleepwalking, and having nightmares, which continued when I returned home. I would find myself in the kitchen making coffee at 1:30 AM because the dream that the alarm had gone off was so vivid. One night, I woke up on my deck in my underwear and barefoot at 2 AM in below zero weather (with snow on the deck) smoking a cigarette, because I was dreaming I was back in Florida at the non-smoking condo. The side effects of fluoroquinolone antibiotics are worse than the symptoms of the illnesses for which they are prescribed. This is not appropriate.
In the year since my reaction, I have been through neurologists, rheumatologists, physical therapy, and psych/neuro testing for the loss of memory and brain function. I have been diagnosed with essential tremor and fibromyalgia and osteoarthritis, with brain fog, reduced cognitive functioning, insomnia, high blood pressure, to name a few. I also have ongoing stomach issues. Here too, the medications that have been prescribed for the adverse effects of Levaquin – the antidepressants, anti-seizure medications, benzodiazepines and pain killers – have side effects far worse than what I experienced post Levaquin reaction and do nothing to heal my body. They only mask my symptoms and don’t even mask them that well.
Going Forward Post Levaquin Toxicity
I use turmeric extract 3 times a day for pain management. The pain never goes away totally, but the turmeric keeps it down to a dull roar. The hot poker sensation that I once felt, is now less frequent. I always have pain though. The sensation of imminent collapse in my thighs never goes away, even though I am back to walking 3 miles a day. The tremors have actually progressed. The tremors and the brain fog (memory loss, loss of words, losing track of what I am doing, loss of ability to multi-task ) have kept me unable to work since May of 2013. And, I still can’t sleep more than 2 hours at a time or with sleep aids 3-4 hours. Here, in December of 2013, I am still disabled. My GP is also certified in Functional Medicine, and we are working with a course of supplementation based on blood tests for oxidative stress and dietary changes. We are following Dr. David Perlmutter’s Grain Brain Diet to improve neurological issues. We are both researching all of the possibilities we can, and hoping each day for some kind of breakthrough for this incredible illness.
Participate in Research
Hormones MatterTM is conducting research on the side effects and adverse events associated with the fluoroquinolone antibiotics, Cipro, Levaquin, Avelox and others: The Fluoroquinolone Antibiotics Side Effects Study. The study is anonymous, takes 20-30 minutes to complete and is open to anyone who has used a fluoroquinolone antibiotic. Please complete the study and help us understand the scope of fluoroquinolone reactions.
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