Anybody else out there know that antibiotics can have serious side effects?
I didn’t. I thought they were fine. The more powerful, the better.
That’s what I thought.
Eight months ago, my son, Jonah, at the age of 24, found out the hard way how wrong I was.
He got “floxed” after going to a local seven-day clinic and getting prescribed a strong antibiotic, levofloxacin, for a bad sinus infection.
What followed was months of pain and anxiety like he’d never known before.
“Words cannot describe the anxiety it set off,” he told me. “The fear that you’re going to die, the major anxiety about what’s going to happen to you.”
‘The nuclear bomb of antibiotics’
As it turns out, anxiety is one of the serious side effects of levofloxacin, according to the U.S. Food and Drug Administration. But there are worse side effects that Jonah managed to avoid: He didn’t go blind. He didn’t end up bedridden. He didn’t rupture a tendon. Unlike the thousands of other people who have shared their stories, desperate for help, on websites and Facebook pages after taking levofloxacin.
There’s a whole community of people online who report being floxed, as they call it. The fluoroquinolones toxicity group on Facebook has over 10,000 members, and the Floxie Hope website offers recovery stories, advice for the newly floxed, and tips on finding help.
It’s alarming and demoralizing to read posts from people who are in chronic pain, permanently disabled or blind from being floxed, especially when it first happens to you and you don’t know how bad it’s going to get (it takes nine months to a year to find out) so Jonah tries to focus on the success stories, and to encourage others himself.
He’s learned that some people suffer for years before they figure out what’s wrong with them. They think they have fibromyalgia, lupus, ALS, osteoarthritis or Lyme disease, only to find out later that the treatment they received for those diseases may have made their floxed condition worse.
They are among the millions of people (22 million Americans in 2014, according to the FDA) who took Levaquin or other antibiotics in a class called fluoroquinolones, which include ciprofloxacin (Cipro), norfloxacin, (Noroxin), ofloxacin (Floxin), trovafloxacin (Trovan), lomefloxacin (Maxaquin), gatifloxacin (Tequin), and moxifloxacin (Avelox).
“It’s like the nuclear bomb of antibiotics,” Jonah says. “The FDA claims less than 1% of people who have taken fluoroquinolones suffer from adverse side effects. But the level of people who have been misdiagnosed after taking fluoroquinolones is unknown. I think that 1% is extremely inaccurate … So many people don’t know about it and don’t get diagnosed by a doctor.”
Floxed by a vending machine
Like many doctors, the physician working that Sunday in the local clinic apparently didn’t know that the Food and Drug Administration had three years earlier issued a “black box warning” specifically against prescribing levofloxacin for a sinus infection — except as a last-ditch effort when less powerful antibiotics failed. Otherwise, the FDA says, the risks outweigh the benefits.
Jonah got his 10-day levofloxacin prescription out of a vending machine at that clinic, 10 minutes after it was prescribed. He says the doctor didn’t mention anything about potential side effects, and there was no pharmacist there to warn him.
“I started having symptoms on the second night,” he recalls. “I was revved up, I was anxious, I was energetic. My body was trembling, my fingertips and hands started going numb. My heart rate was so amped up. That’s when I knew something was wrong.”
He says one of the (many) frustrating things about being floxed is that no two people are impacted the same way, and what makes one person better may make another person worse. That’s because floxing can affect one or all of these body systems, according to the FDA: Musculoskeletal, peripheral nervous system, neuropsychiatric, senses, cardiovascular and skin.
FDA finds chronic pain and ruined lives
After receiving enough complaints about serious and lasting fluoroquinolone side effects, the FDA evaluated patients who had been seriously floxed. Three-quarters of them were 30 to 59 years old.
“Many patients described how seriously the disability impacted their lives, including job loss and the resulting lack of health insurance, large medical bills, financial problems, and family tension or dissolution,” the FDA said in a report on its website.
The average patient in the study had been dealing with serious side effects for 14 months. The longest for nine years. Long-term pain was the most common symptom, with 97% of all cases reporting pain in their musculoskeletal system.
Jonah came to know that pain well. It occurred in stages, but the first 4½ months were the worst.
“It was like a ripping pain through my calves, legs, tendens, like they were ripping off the bone,” he says. “Your body feels fragile, like paper mache.”
Ice packs became his best friends, as the pain hit in one area one day, then would move to another place the next, mostly in his lower body.
The first two months, “I couldn’t drive, eat, sleep, travel — I had to crawl up the stairs or walk around the (outside of the) house,” he says. The pain in his legs was “like having a cramp that wouldn’t go away. Every tendon under my waist felt like it was being shredded. I walked with a walking stick. It was terrible.”
Insomnia, panic attacks and paranoia
One of the more insidious side effects of being floxed is the way it can affect the central nervous system, leading to insomnia, anxiety, paranoia, nervousness, agitation, even seizures.
“My nervous system was affected immediately,” Jonah told me. “From the moment I felt that tingling in my fingertips, I didn’t sleep the whole time. I felt extreme paranoia, panic attacks, I couldn’t sleep.”
We put him on a mattress on the living room floor, and my wife, Terri, slept on a couch next to him, but Jonah was either tossing on the mattress or up pacing all night.
“I probably went about a week without sleep,” he says.
For the first month, his sleep was short and troubled, with terrible nightmares. His anxiety was so visible, and so alarming, that a doctor fast-routed him to a mental health counselor. Those sessions were helpful during the worst of it, not least because a medical professional affirmed what he was feeling, Jonah says. One of the frustrating things about being floxed is people don’t believe you, and medical professionals don’t seem to take you seriously.
Fortunately, Jonah has left the nervous system issues behind, no longer sees the counselor, and now deals strictly with the physical pain.
More than 20,000 people a year go to the emergency room after taking fluoroquinolones, according to the National Center for Health Research. And a CDC study found that even the safer fluoroquinolones resulted in high rates of hospitalization “due to psychiatric and neurologic adverse events.” Even worse, patients have developed hallucinations and suicidal thoughts shortly after taking these antibiotics, or severe liver and kidney problems.
These antibiotics are nothing to play around with. Yet the National Center for Health Research reports that one in three patients, like Jonah, receive them unnecessarily.
Black box warning is too often ignored
How can that be? The FDA issued a black box warning in 2016, the most serious warning it puts out. But a lot of doctors apparently didn’t get the word: Two studies referenced in an online article in Contagion Live conclude that “the 2016 FDA boxed warning did not significantly decrease the rate of fluoroquinolone prescribing (in) family medicine practice clinics.”
As painful and debilitating as this experience has been for Jonah, he���s been lucky. He found out almost right away, by doing his own research on the Internet, that he had been floxed. He saw a doctor who immediately stopped the one-pill-per-day treatment after four doses and put him on Amoxicillin, a much less powerful antibiotic, which cleared up his sinus infection.
Unfortunately, most of his visits with medical doctors after being floxed left him frustrated and troubled. The doctors didn’t seem to be listening to him — or me, I usually went with him — and they didn’t seem to believe that fluoroquinolone side effects were behind his sudden health problems.
“I’m not trying to bash on doctors, but the regular doctors were not real helpful,” he says, adding that there doesn’t seem to be much that regular medicine can do to treat fluoroquinolone side effects, anyway.
Turning to alternative medicine
After 2½ weeks, Jonah went to see a naturopathic doctor, Joan Waters, who practices in Detroit Lakes. She hadn’t treated anyone with fluoroquinolone toxicity before, but listened to him, strongly supported him, researched it, and has helped get him to where he is now — close to fully functional, and feeling the best he has in eight months.
“I don’t realize how far I’ve come until I look back on it,” he says.
Along the way, he also did everything he could to help himself.
He didn’t take corticosteroids, Gabapenten, or other medications often prescribed for flox-type symptoms, which his research showed could make his condition worse. He won’t take any prescription or over-the-counter medications, not even Tylenol, and has done a 180-degree turn on his eating habits, embracing a gluten-free, dairy-free, extremely low sugar diet and eating only farm-raised meat from animals never given antibiotics.
He cooks most meals himself, shopping often at Manna Food Co-op and at Amish farms, and Roasted is one of the few local restaurants he eats at, because of its locally sourced food. He has to be careful: The wrong food will cause a flareup of his symptoms and days of pain.
Because of the way medications can interact with his condition, he thought hard before agreeing to take a Novocaine-type painkiller for the removal of an impacted wisdom tooth in late summer. He paid for that pain relief with “one huge, astounding, terrible (three-week) flare-up,” he says.
From the start, Jonah has researched his condition online and experimented with different dietary supplements, from Vitamin C to collagen — at first on his own and later with the help of Waters. He admits he went about it the wrong way. Not sure what was helping and what wasn’t, he has stopped taking them all, and after a month will test them one at a time to see if they help.
On the upswing
In general, Jonah said things are looking up.
“November was wonderful,” he says. “It’s gotten better and better.”
A musician in the reggae band Rootz Within, Jonah is now able to travel, play guitar and sing again.
“It’s a lot of two steps forward and one step back, but normal life stuff is starting to come back to me,” he says.
He can ride to the Twin Cities without stopping, and play a set without having to sit down for it. On his first trip to the Cities, shortly after getting floxed, he said he had to stop maybe 15 times to try to walk off deeply painful leg cramps.
“The biggest part is just accepting what happened to you. People will go years and years without accepting it because no doctor will diagnose it,” Jonah says. “My life will never be the same again, but I can lead a life that’s more and more pain-free. The good days outweigh the bad.”
Fast facts on floxing
In 2014, 22 million Americans took antibiotics in a class called fluoroquinolones, which are known to cause serious side effects in some patients. They include levofloxacin (Levaquin), ciprofloxacin (Cipro), norfloxacin (Noroxin), ofloxacin (Floxin), trovafloxacin (Trovan), lomefloxacin (Maxaquin), gatifloxacin (Tequin), and moxifloxacin (Avelox).
Floxing can affect one or all of these body systems: Musculoskeletal, peripheral nervous system, neuropsychiatric, senses, cardiovascular and skin.
More than 20,000 people a year go to the emergency room after taking fluoroquinolones. One study found that even the safer fluoroquinolones resulted in high rates of hospitalization “due to psychiatric and neurologic adverse events.” Patients have developed hallucinations and suicidal thoughts shortly after taking the antibiotics, or severe liver and kidney problems.
In an FDA study, the average floxing patient had been dealing with serious side effects for 14 months. The longest for nine years. Long-term pain was the most common symptom, with 97% of all cases reporting pain in their musculoskeletal system.
The FDA issued a “black box warning” about fluoroquinolones in 2016, the most serious warning it puts out.
The National Center for Health Research reports that one in three patients receive fluoroquinolones unnecessarily.
Sources: U.S. Food and Drug Administration, National Center for Health Research, Centers for Disease Control and Prevention, U.S. Food and Drug Administration
Editor's Note: This story originally appeared in the Detroit Lakes Tribune's Winter 2020 Health Beat magazine. Read more local, health-related stories like this one HERE, or pick up a free copy of Health Beat on area newsstands.