Tag Archives: appreciation

Fluoroquinolone Toxicity Stories in the Media

It takes a tremendous amount of strength and bravery to publicly tell one’s personal story of chronic illness and iatrogenic injury, and I am so grateful to those who have told their stories of fluoroquinolone toxicity to the media.

There is often shame around chronic and mysterious illness, and that shame and desire to hide what is “wrong,” often leads people to stay silent about their illness. I commend everyone who has overcome shame associated with illness, and who has spoken out about the harm that fluoroquinolones have caused. (And I also commend those who know that there is nothing to be ashamed of, who shout about what happened as loudly as possible.)

I wanted to take this chance, and use this post, to publicly thank all of the brave and wonderful people who have reached out to the media to tell their stories. They deserve thanks. With every story that gets published in the media (whether in a newspaper, on a website, or on television) comes greater awareness of the dangers of fluoroquinolones, and more compassion for those suffering from fluoroquinolone toxicity.

There are more than 150 media stories about fluoroquinolone toxicity published on the Links & Resources page of Floxiehope.com. Each media story features a person (or two, or more) who has been hurt by Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin, or Floxin/ofloxacin. In each media story, a person got vulnerable, and opened him or herself up to risk of derision and rejection from naysayers, so that she or he can speak the truth about the harm that fluoroquinolones cause. Speaking out is not an easy thing to do, and, from the bottom of my heart, I thank everyone who has been featured in a media story.

It would be impossible for me to recognize everyone individually – without a doubt, I would leave someone out – but I want to highlight a few media stories that have been particularly impactful, and the people who made them possible.

Richard Pyne’s story was highlighted in the article “Left paralysed from Fluoroquinolone antibiotic toxicity” that was published on Al Jazeera. “Left paralysed from Fluoroquinolone antibiotic toxicity” notes that:

Richard Pyne’s health reflects a man much older than his 42 years. His world is today little more than the confines of his mother’s house, which he moved to so she could take on the role of his primary carer. Until recently, the Briton lived in his own flat and held down a job, but now, he says, he struggles to walk, to sleep and to live a day-to-day life that doesn’t involve some form of physical distress.

“My health and my life have been destroyed,” said Pyne, speaking to Al Jazeera from his home in Norwich, in England’s East Anglia.

Pyne blames his health crisis, which also includes skin and respiratory complaints, on ciprofloxacin, an antibiotic of the fluoroquinolone drug class. He was prescribed ciprofloxacin – or cipro, for short – to treat prostatitis in January 2016. Far from giving him the new start he wanted, however, the cipro, says Pyne, began to ravage his body within weeks of taking it leaving him effectively housebound.

“I can’t walk properly and haven’t been able to walk properly for over a year,” said Pyne. “My elbows, knees, ankles, pelvic joints, just snap and pop – even my neck.”

Richard’s story makes the article poignant, accessible, and real to the people who read it. The article is impactful because of Richard’s story. Thank you, Richard, for telling your story.

In the PBS Newhour story “Certain Antibiotics Spur Widening Reports of Severe Side Effects” both Jenne Wilcox and John Fratti tell their stories of permanent harm done to them by fluoroquinolone antibiotics:

JENNE WILCOX, patient: I couldn’t even hold my head up. And I was bedridden for over a year. And when I say that, I mean, I couldn’t even get myself out of bed to get into my wheelchair to go use the restroom. I had to be picked up out of bed.

JOHN FRATTI: It caused nerve damage, tendon damage and central nervous system damage. Central nervous system damage is — is brain damage.

JOHN FRATTI: I have lost my job. I have lost over a quarter of a million dollars in lost wages. I have spent about $30,000 out of my own pocket in medical and insurance costs, haven’t received a dime back for this.

Certain Antibiotics Spur Widening Reports of Severe Side Effects” shows both Jenne Wilcox and John Fratti in vulnerable, deeply personal, situations, and it illustrates the pain, disability, and loss that these drugs cause. They are both appreciated for putting themselves out there, in one of the first news stories about fluoroquinolone toxicity (it was aired in 2011).

In the New York Times article, “Popular Antibiotics May Carry Serious Side Effects” the story of Lloyd Balch is featured. It is noted that:

In addition to being unable to walk uphill, climb stairs or see clearly, his symptoms included dry eyes, mouth and skin; ringing in his ears; delayed urination; uncontrollable shaking; burning pain in his eyes and feet; occasional tingling in his hands and feet; heart palpitations; and muscle spasms in his back and around his eyes. Though Mr. Balch’s reaction is unusual, doctors who have studied the side effects of fluoroquinolones say others have suffered similar symptoms.

Three and a half months after he took that second pill, these symptoms persist, and none of the many doctors of different specialties he has consulted has been able to help. Mr. Balch is now working with a physical therapist, but in a phone consultation with Dr. David Flockhart, an expert in fluoroquinolone side effects at the Indiana University School of Medicine, he was told it could take a year for his symptoms to resolve, if they ever do disappear completely.

Thank you, Lloyd, for telling your story! “Popular Antibiotics May Carry Serious Side Effects” was published in 2012, and it has been highly influential.

Roughly 100 local news stories about fluoroquinolone dangers have aired in the last couple years. Each news story features interviews with victims of fluoroquinolones, and everyone who was featured in a local news-story is brave, wonderful, and appreciated! This post would be ridiculously long if I grabbed quotes from each local news story about fluoroquinolone toxicity, and I would undoubtedly forget several people, but I want to give a broad shout-out of thanks to everyone who has been featured on a local news story about fluoroquinolone toxicity. With each of the local news stories came more awareness and compassion, and it led us closer to meaningful change in how fluoroquinolones are perceived and prescribed.

A particularly impactful local news story is “Local woman says popular antibiotic killed her husband” which aired on WSB TV 2 Atlanta. It was shared thousands of times on social media, and I heard that Levaquin prescriptions in Atlanta dropped significantly for months after it aired. You can see “Local woman says popular antibiotic killed her husband” below:

Kathy Dannelly is incredibly brave for sharing her, and Chris’s, story, and her advocacy is appreciated! Jeff Stephens is also brave and his contribution to the news story above is also appreciated!

All the stories of harm done by fluoroquinolones are valuable, important, and poignant. Without people being willing to tell their stories, no one would understand the true nature of fluoroquinolone toxicity – that it is a devastating illness. Because people have been wiling to speak out and tell their stories, more and more people realize the nature of fluoroquinolone toxicity, and many people have been warned and saved from suffering from fluoroquinolone toxicity themselves.

Humans are storytelling creatures. We understand the world through stories. Each and every story of fluoroquinolone toxicity is valuable, and the people who have told their stories to the media so that they could be amplified, are appreciated. Thank you for telling your stories. It’s not easy to do, but it’s valuable, and appreciated.

 

 

 

 

Review of Through the Shadowlands

I just finished reading Through the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand by Julie Rehmeyer. It’s a memoir about the author’s journey through Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). It’s a beautifully written, thoughtful, insightful look at ME/CFS, and how Rehmeyer got through the harrowing illness and regained her health.

Many floxies deal with horrible, intractable fatigue, and suffer from ME/CFS after getting poisoned by Cipro, Levaquin, Avelox, or other fluoroquinolones. I experienced some fatigue while going through fluoroquinolone toxicity, but I never considered myself to be afflicted with ME/CFS (my fatigue episodes passed relatively quickly–thank God). However, the bouts of fatigue I had were frightening, and going through my own “mysterious illness” gave me empathy for others dealing with under-acknowledged diseases. I became facebook friends with several people in the ME/CFS community, and I gained an even greater appreciation for the severity of ME/CFS and the strength it takes to endure it. It truly is a horrific disease, and the horror of it is only compounded by the lack of acknowledgement it receives.

I hope that Rehmeyer’s book brings attention to ME/CFS, and that people recognize how severe and devastating the disease truly is. And I hope that recognition of ME/CFS brings attention to all multi-symptom, chronic, mysterious illnesses that “can’t be reduced to tidy pathologies or a uniform set of symptoms.” These illnesses are real–they are not “just in your head,” and they are less “rare” than people would like to acknowledge. Yet these illnesses are systematically overlooked because they are too complex to form a single hypothesis around. Autoimmune diseases, neurodegenerative diseases, autonomic nervous system diseases, mitochondrial dysfunction diseases, fibromyalgia, ME/CFS, POTS, EDS, and, of course, iatrogenic diseases like fluoroquinolone toxicity, are complex and multifaceted, and they affect every part of the body and every individual differently. They’re difficult to study, but studying them is important. Ignoring them, and pretending that they don’t exist, isn’t helpful to anyone.

Some parts of Through the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand really resonated with me, and reminded me of my experience with fluoroquinolone toxicity. I’m going to point them out here, along with comments, with the hope that they will trigger in you some of the recognition they triggered in me.

In the epilogue, Rehmeyer states:

“Although I’ve certainly worked hard to improve my health as I have, I also want to be clear: I got lucky. I could have done everything I did and still be desperately ill. I think I get some credit for my improvement, but only some. A big part of it is simple good fortune.”

Yup. I’ve been meaning to write a post about the luck aspect of recovery for a while. Why did I recover from fluoroquinolone toxicity when others don’t? Luck. Pure, simple, unfair, ridiculous, stupid luck. I got lucky. I was able to get into a spiral of health. Early in Through the Shadowlands, Rehmeyer says that health and illness are like valleys between hills, and your state of being is like a marble (or boulder–depending on how big your metaphorical valleys are) that is trapped in that valley. It’s easy to stay in the valley–whether that be the health valley or the illness valley. It’s difficult to push yourself up a hill into the other valley. (Hopefully I’m remembering the metaphor roughly correctly–sorry if not.) I was able to get over that hill, into the valley of health, and I was able to do it without near as much suffering as others. Why? Luck. I’m not a better person, nor did I do more things correctly. I was just luckier.

In chapter 19: Moldy Science, Rehmeyer states:

“Learning all this, I felt as if my brain were quietly exploding. A scientific organization put out a statement that was contrary to science, and scientists couldn’t get it removed for 12 years! How could that happen?

And if respected organizations could sow doubt about whether mold is a significant risk factor for asthma–a link that had been observed in the very first textbook on asthma ever written, in 1698–what hope did I have that science would come to understand my weird illness?”

Science is political. You knew that, right? It’s not supposed to be, but it is, so don’t think it’s not.

Just as there have been scientists silenced about the dangers of mold for decades, there are scientists who recognized that topoisomerase interrupting drugs, like fluoroquinolones, are a very bad idea, and are quite harmful to mitochondrial and bacterial DNA. Perhaps messing with our mitochondrial and bacterial DNA and RNA replication enzymes isn’t a particularly good idea. But if a scientist was to say something as brazen as that he or she would be admonished, and maybe even punished.

Throughout Through the Shadowlands, Rehmeyer seems to struggle with her worldview. Is she a scientist who only does treatments that are backed up by placebo controlled trials, or is she a person who is willing to try anything to get better, even if it has a woo-woo component to it? If she tries the alternative treatments, can she still consider herself to be a skeptical scientist? But if science is failing her, and her fellow ME/CFS sufferers, does it deserve the credence and weight she gives it? After a significant struggle, Rehmeyer seems to settle on the approach that depends more on evidence gathered from her personal experience than evidence gathered in labs. She opens herself up to alternative treatments, and reluctantly finds that they help her. She seems to long for evidence of why they help her, and to struggle with the possibility that they are just placebos. At the end of the book, it seems that Rehmeyer stops trying to find identity in the science vs. alternative medicine paradigm, and she settles into a worldview that identifies her as a person with ME/CFS, who has overcome the disease, and who is now part of that tribe. The scientist and woo-woo tribes are less significant, what is significant is her tribe of fellow sufferers (and her family and other loved ones).

In chapter 11: An Unlikely Hypothesis, Rehmeyer writes about the facebook community of fellow ME/CFS sufferers. She states:

“My attitude toward my fellow patients had already started to soften as I had been exploring the forum more, and on Facebook, I found them endearing, and even inspiring. I saw how they turned to one another not just for advice as on the forum, but for a community and support and a social life after they’d been abandoned by so much of the world.”

I find the floxie community, largely found on facebook, to be incredibly inspiring. They are brave, thoughtful, generous, wonderful people, and I am honored to be among them. I also appreciate the other chronic illness communities, including the ME/CFS community, the POTS community, the floxie community, the other pharma-injured community, the fibromyalgia community, etc. All of these communities of people with chronic, poorly understood diseases are wonderfully supportive and strong, and they are appreciated.

Much of Through the Shadowlands felt familiar. I knew who many of the people were that Rehmeyer wrote about, even when she didn’t refer to them by name. I felt as if I was reading about the journey of a friend (or, at least a friend of a friend), and in some ways, I was. The community of people affected by mysterious, chronic, under-recognized illnesses is small, and we have many fights in common. We’re in this together–fighting for recognition, and cures. If Through the Shadowlands helps those suffering with ME/CFS to gain recognition and acknowledgement, perhaps it will hep floxies and others living with mysterious illnesses too.

I recommend that you read Through the Shadowlands. It’s a good book. It’s a well-written, insightful, thoughtful memoir, and I suspect that it will resonate with anyone suffering from a mysterious illness.

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