by Rachel Brummert
On October 28, I wrote an article called Stupid Things People Say About Fluoroquinolone Toxicity. I'd like to delve a little deeper into that. While I understand that most people mean well and they are just trying to help, statements such as the ones below are very hurtful and damaging. Some are downright ignorant. These statements are centered around Fluoroquinolone Toxicity, but anyone with a chronic and/or invisible illness have heard these.
“You need to get out more”
Fluoroquinolone Toxicity patients wish we could do that, but the reality of it is that we're in a lot of pain, we are chronically fatigued, our bodies feel like it's on fire and that's not even scratching the surface. Getting out and going to the mall isn't going to help us. We are in tune to our bodies and we know what makes us better and what makes us worse. We are just trying to survive. The fact that you are uncomfortable or feeling helpless when you see us in agony on the couch isn't going to make us any better.
“Are you getting enough sleep?”
Fluoroquinolone Toxicity can cause insomnia. Even if we could sleep, sleep doesn't cure chronic illness.
“You don't look sick”
Ninety-six percent of chronic illness is invisible. The pain is hidden under skin and that doesn't make it any less real. The pain is overwhelming and intense. To use that old adage: Don't judge a book by its cover.
Every Fluoroquinolone Toxicity patient wishes that this was enough, but it's not. It may sometimes help us try to fight this everyday but living with this is exhausting. Thinking positive doesn't take the pain away, it doesn't stop the ringing in our ears, it doesn't repair our tendons, and it doesn't clear away brain fog. Sometimes we need to break down, cry, curse the world, and that's okay. We don't need people telling us to “think positive”. What we need is support. What we need is to be believed.
“My friend was cured by...”
This is a dangerous statement to make to someone with Fluoroquinolone Toxicity. Everyones' makeup is different and people with Fluoroquinolone Toxicity can develop severe food and chemical sensitivities. Not only that...There is no cure for Fluoroquinolone Toxicity. There are people who have recovered from this, but there is no blanket treatment, supplement, or medication that cures this. What helps one person could be dangerous to another.
“Dr Oz says....”
I wasn't even going to dignify this with an answer but since I hear this a lot, I'm going to address it. First of all, you should never substitute medical advice from a television doctor who is more concerned about ratings and being a celebrity over consulting with a doctor who can actually examine you and look over test results. Second of all, Fluoroquinolone Toxicity is a poorly understood condition by both doctors and patients. Part of what we do at Quinolone Vigilance Foundation is educate the medical community. We rely on peer-reviewed, published, unbiased, scientific research, which prove that Fluoroquinolone Toxicity is a documented fact. Third of all, Dr. Oz is a controversial doctor who has been slammed for pushing products that have no basis in scientific fact.
“I wish I didn't have to work”
Many of us, like myself, had careers before we got sick. The fact that we became sick, injured, and disabled is hard enough but the lost income and the medical bills incurred is enough to bankrupt anyone. Many of us can't play with our children, lost our homes and livelihood, can't make ends meet due to lost income. “YEAH, sign me up for THAT”, said no Fluoroquinolone Toxicity patient ever... Even if we could get disability, that's hardly enough to live on.
“It could be worse”.
Of course it could but that shouldn't take away from the fact that this is a very serious illness which is painful, horrible, debilitating, and can kill.
“Are you better yet?”
We'll let you know if or when that happens. We'd make that happen if that was within our power, but it's not. There is no set time that determines when or if someone feels better. Some do. Some live with this indefinitely. Don't let the myth that an antibiotic, which is supposed to help us feel better, can't disable people overpower reason. The fact is, fluoroquinolone antibiotcs like Cipro, Levaquin, and Avelox-- brand name or generic, oral, IV, or topical in ear drops and eye drops-- can and do disable and kill every day.
“You should try this diet”
While it is true that a clean, organic diet does help some people, suggesting a particular diet, fad, trend, etc can be very dangerous for people with Fluoroquinolone Toxicity who are chemical and food sensitive. The damage fluoroquinolones cause goes way down into cellular level. You could potentially harm someone even more by suggesting someone try some diet you heard about.
“It's made up by Big Pharma”
Big Pharma is a billion dollar business concerned about profits. Fluoroquinolones were manufactured for life threatening infections such as anthrax and the plague. Yet these drugs are routinely prescribed off-label for minor infections such as UTIs and sinus infections in which less potent medications would work. Many times, fluoroquinolones are given when there is no infection. Always insist that an infection be cultured before accepting an antibiotic and always demand a safer alternative.
“I haven't heard of that. Is it real?”
Yes, and it affects millions of people around the world. Most times, a patient doesn't even connect their symptoms to a fluoroquinolone because the symptoms can mimic other diseases. It can also affect any part of the body. Many doctors often treat patients symptomatically and don't get a complete picture of how wide-spread the damage is, or what the root cause is.
Now that we got this out in the open, what does help?
- One of the best, and most important, things you can do is-- and I can't stress this enough—BELIEVE THEM. Fluoroquinolone Toxicity is real. There is scientific research behind this, and through Freedom of Information requests, there is documentation from the FDA themselves that clearly state they are aware of how much damage these drugs cause. There are Black Box warnings on these drugs. A Black Box warning is the highest warnings that come from the FDA. Fluoroquinolone Toxicity is not rare by any means, can cause Mitochondrial Toxicity, which can lead to neurodegenerative disorders like Parkinson's, ALS, Alzheimers and more. With so much information and research, you're doing a disservice to your loved one by dismissing them.
2. Ask them what you can do or how you can help. Don't assume that you know because unless you go through this, you can't understand what someone needs.
3. Go to saferpills.org to educate yourself about Fluoroquinolone Toxicity.
Quinolone Vigilance Foundation