In another version of this scenario, perhaps your antibiotic gives you problematic side effects such as headache, nausea, stomachache, or diarrhea. Maybe these ailments are troublesome, but you endure them while finishing your prescription. After all, side effects go away, right? Chances are, most of us have experienced this as well.
Now try to imagine a third scenario. It’s long, but I implore you to read it.
Adverse Reaction: The Fluoroquinolone Nightmare Begins
You visit your doctor for a suspected UTI, and she prescribes Cipro, an antibiotic in the Fluoroquinolone (FQ) family, which you are to take for a week. Three days after finishing, you abruptly experience an explosion of symptoms. You get the worst headache of your life. You become confused and tongue-tied during a simple conversation, but you believe you’re simply tired, so you go to sleep. You wake up the next morning and feel burning, stabbing pains everywhere, and numbness and tingling in your hands, feet, and face. Your muscles twitch. You have widespread body pain, and hear audible crackling of your joints every time you stretch or take a step. You have trouble walking, and your ears ring. Your mind is dulled, and you struggle to follow conversations and recall words. You feel a vibrating sensation from deep in your bones, like your body has been plugged into an electrical outlet.
Imagine that you’ve saved the package insert from your antibiotic, so you read it to see if perhaps your symptoms could be related to the drug. (You remember feeling mild but strange sensations in your arms while taking Cipro the week before, but didn’t think much of it at the time.) You’re shocked to find the following paragraph:
Ciprofloxacin should be discontinued if the patient experiences symptoms of neuropathy including pain, burning, tingling, numbness, and/or weakness, or is found to have deficits in light touch, pain, temperature, position sense, vibratory sensation, and/or motor strength in order to prevent the development of an irreversible condition.
An irreversible condition?
In addition, the following words and phrases stood out:
- Tendon and joint damage
- Joint stiffness
- Muscle weakness
- Tendon rupture
- Central nervous system events
- Adverse reaction
- Contact your doctor
Oh my god. Surely you can’t be having an adverse reaction to a drug, can you?
You open your laptop and type the words “adverse reaction Cipro” into google. You’re shocked to find websites detailing the very symptoms you’re suddenly experiencing. You find YouTube videos warning people of the dangers of Fluoroquinolone antibiotics, and a support group with over 3000 members. They’ve named the condition “Fluoroquinolone Toxicity”. They call their cluster of symptoms being “floxed”, and themselves “floxies”. Someone wrote a book describing what ONE Fluoroquinolone pill did to his wife, prompting extensive research into pharmaceutical industry corruption.
Worse, you learn that no viable treatment exists for this toxicity. People become guinea pigs trying various supplements and healing modalities in a desperate attempt to find relief, because no one else is helping them. No one believes them. Not doctors, sometimes not even friends and family. They are sick and suffering for weeks, months, or years. Some suffer for decades. Some commit suicide.
This can’t be happening.
You call your doctor’s office, relay your symptoms, and inform them of your adverse reaction to Cipro. A nurse calls back and advises you to drink eight glasses of water that day to help flush the medication from your system, and to follow up with your doctor.
The next morning you march into the doctor’s office with your wobbly, burning legs, feeling even worse. You mention the Cipro package insert and the online support group with 3000 people experiencing the same symptoms as you, but your doctor doesn’t believe Cipro caused your problems. She thinks you have Guillain-Barré Syndrome, so she sends you to the ER. The ER doctors don’t believe you, either; they think you have an anxiety disorder.
“The drug left your system days ago; it can’t be causing those symptoms.”
You go home and post a message to the online support group. “My doctor doesn’t believe me even though I showed her the drug insert listing the symptoms of an adverse reaction.” People console and advise you, thus marking the beginning of several friendships with a diverse group of strangers united in their suffering.
After a few days you’ll return to the first doctor, who will switch her focus to either Multiple Sclerosis or Conversion Disorder, a fancy name meaning “yes, you have real symptoms, but they originate in your mind.” She’ll refer you to a neurologist to rule out MS and send you on your way.
You’ll keep returning to doctors seeking help with your issues, or even a simple validation that Cipro wrecked your health. It will never come. You’ll feel poisoned, like you’re on the brink of death with over 40 symptoms, yet all your medical tests will be normal.
“Cipro doesn’t cause this ‘syndrome’,” doctors will say.
They’ll offer Prozac to treat the mental disorder they believe you have.
Now imagine spending three entire years dealing with this, suffering in ways you never imagined possible, every day bringing a new version of misery. Some days you can’t walk without pain. Some days your hands and feet burn all day. Some days a migraine slurs your speech, and makes you feel cross-eyed with distorted limbs, and joints twisted up like a pretzel. Some days you feel electrocuted; other days fatigue leaves you with leaden limbs, a supreme effort required for every move. Some days you’ll experience all of the above, and then some.
Some days you’ll lean on furniture at work – sick, exhausted, and shocked that you haven’t collapsed onto the floor yet. Some days you can’t bring yourself to go to work, so you stay home. But resting does not provide relief. Nothing provides relief.
Because Cipro caused insomnia, you’ll be unable to sleep more than a few hours a night for weeks, months, years. A six hour stretch will become a rare miracle. Some nights, when you do drift off to sleep, you’ll be abruptly awakened by loud zapping noises and sensations in your head. This may happen as many as 20 times before you finally succumb to broken sleep.
Environmental Triggers are Real: Post Fluoroquinolone Reactions
One day you’ll realize that, in addition to the symptoms Cipro caused, you are also reacting to environmental triggers. You’ll remember that your symptoms worsened after dying your hair and moving to a newly-constructed workplace with its fresh carpet, paint, and building materials. You’ll recall the times you arrived at work with your normal Cipro symptoms, but also developed dizziness, nausea, confusion, a stuffy head, burning lungs, and more within half an hour and how those symptoms would ease on the drive home.
You’ll remember the time you felt like you were having a stroke shortly after applying a new lip balm – how you had to steady yourself on your boyfriend’s arm so you wouldn’t fall while walking through the grocery store. You’ll realize you now get a headache every time someone smokes a cigarette nearby, which fades about 20 minutes afterward. In hindsight, you’ll recall several other examples which point to environmental triggers, finally understanding the cause of some of your misery.
The environmental component will also explain why you’ve been unable to tolerate medications to ease your suffering: ever since you took Cipro, your body now reacts to them like foreign invaders, the same way it reacts to other chemicals. Advil now gives you stabbing joint pains and flares your neuropathy. Tylenol makes you drowsy. Both pain medications paradoxically cause headaches. Zantac causes mental confusion and agitation – side effects “typically only seen in severely ill, elderly patients”, according to the package insert. Your days of over-the-counter relief for common ailments will be over.
You’ll post a message to your support group for commiseration, and someone will respond, telling you she developed Multiple Chemical Sensitivity (MCS) after her adverse reaction – that many floxies have become sensitive to foods and chemicals, and must avoid their triggers in order to feel well. You’ve never heard of MCS, but you’ll be relieved to learn of possible tangible ways to finally ease your symptoms. This relief will be short-lived, however, once you consult your doctor.
“I’ve finally figured out the reason for some of these terrible symptoms,” you’ll explain. “Every time I go to work I get a headache, dizziness, and nausea, and my neuropathy flares up. I think I’m reacting to the new paint, carpeting, and drywall materials. Plus, I feel even worse when t-shirts are printed – I think I’m reacting to the chemicals in the fumes.”
Your doctor will stop you and put up his hand. “There’s no such thing as chemical sensitivity,” he’ll say. “If you continue down this road, you’ll be labeled mentally ill.”
You’ll plead with him. “How can that be? I know this is real; I have countless examples from before I even learned what MCS was.”
“You should stay off the internet,” he’ll advise. “There’s a lot of false information out there.”
“But this was happening to me long before I ever connected my symptoms to chemical exposure; reading about it didn’t cause delusions – it confirmed the reason I feel sick all the time.”
You’ll tell him about the day you were working with the outside door open and suddenly developed an instant headache and became very dizzy. You couldn’t understand why, until a few minutes later when a landscaper spraying herbicide walked by.
“How could MCS be all in my head when I was completely unaware a chemical was being sprayed nearby? It’s not as though I smelled it, became anxious, and developed anxiety-related symptoms. The chemical was odorless and I had no idea why I was suddenly ill until I saw the landscaper.”
But your doctor will remain unconvinced. Nothing you say will matter. He will never believe Cipro harmed you, or that you developed MCS. You’ll keep returning to this doctor for months, hoping in vain that one day he’ll believe you, or that he’ll somehow be able to help you. That day will never come.
What will happen, instead, is that you’ll develop PTSD from the trauma of suffering acute, daily illness and having medical professionals – the people in charge of your healthcare, the people you always thought would help in times like these – completely dismiss your suffering as psychological. The post-traumatic stress will become so bad that you won’t be able to make a doctor’s appointment over the phone anymore without shaking and bursting into tears.
You’ll learn to minimize your adverse reaction to Cipro with new doctors, and to never call MCS by name anymore. You’ll say, “I tend to get unpleasant side effects from drugs,” and “Certain foods and strong scents give me migraines.” Because by this time, you’ll have realized that no standard treatment exists for MCS – just like Fluoroquinolone Toxicity. Many people sink tens of thousands of dollars into nutritional therapies from integrative and alternative practitioners without seeing much improvement in their health. Or if they do, they must still practice strict avoidance of chemicals in order to maintain their health.
But you don’t have tens of thousands of dollars, and insurance won’t cover tests and treatments for a health condition they don’t believe exists. You’ll realize with horror that there is nowhere to turn.
Dark Night of the Soul
Your health will worsen in the coming weeks and months. Nothing will provide relief except avoiding triggers, which will be nearly impossible (and never will the relief be 100%). Your favorite foods and drinks will cause unbearable symptoms. Walking by a person wearing perfume will cause an instant migraine. A trip to the grocery store will ruin you for the rest of the day with all the ambient chemicals from within the store, as well as people’s personal care products and the laundry detergent residue lingering on their clothes.
You’ll suffer through colds and other illnesses with no relief whatsoever, because you won’t be able to take medications. Sleeping your misery away won’t even be an option, because you’ll still have insomnia, and Cipro destroyed your ability to nap during the day.
Cipro destroyed everything.
Working will become unbearable because of the constant exposure to chemicals, but you won’t be able to quit because you have a child to care for. You’ll ask your boss to instate a “no perfume” policy for the workplace to help ease your misery, but he won’t. You’ll begin to wear a mask to filter chemicals, which will make people look at you like you’re a crazy germaphobe. But wearing the mask is the only way you can continue working while minimizing the urge to someday drive off the embankment of a highway to your death, because you just can’t handle being sick for another second and you have to make it stop.
You’ll have nightmares about being forced to take Cipro against your will, or forced to breathe Lysol while people tell you it’s safe, and can’t possibly make you ill.
Once night, you’ll dream you’re wandering through a graveyard, desperately looking for a place to sit and relax, but every time you find one you’ll be forced to get up and move somewhere else. This will continue for hours, until you are so weary you can barely move. You’ll awaken, and curse your inability to rest, even during sleep. Then you’ll realize this dream was a metaphor for your new, post-illness life: a never-ending, elusive search for help and comfort within the graveyard of your life. Because there is no outside comfort anymore…and nowhere to turn for help.
Your life, seemingly overnight, will resemble an episode of The Twilight Zone. While you’re suffering you’ll watch the whole world carry on as normal, with people either in outright denial of your plight, or enjoying their lives in blissful ignorance. You’ll hear of people taking fluoroquinolones with no adverse effects, not realizing that people can take several prescriptions before reaching a threshold of tolerance that could render them just as ill as everyone in your support group. Not realizing that FQs can cause delayed reactions – symptoms that don’t show up for days, weeks, or months after the last pill is swallowed. You’ll try to warn people, but they won’t believe you.
Nearly every single day someone in your FQ support group will mention a friend, relative, or stranger they met in public who developed mysterious health ailments doctors couldn’t diagnose, right after taking Cipro, Levaquin, or Avelox. People who didn’t initially connect the onset of their symptoms to antibiotic usage until someone encouraged them to check their medical records.
New people will join your support group every single day telling a similar version of your story, and met with a similar level of disbelief from people in their lives. Everywhere you turn, you will hear (or hear of) the following being said:
- “Cipro doesn’t cause those symptoms.”
- “Prescription drugs can’t do that to people. Something else must be wrong with you.”
- “You’re Googling too much. Stay off the internet.”
- “Your support group members are probably exaggerating.”
- “Your joints hurt? That’s called aging.”
- “The drug is out of your system within a certain amount of hours. There’s no way it can cause damage after that time.”
- “If fluoroquinolones were that bad, they wouldn’t be on the market.”
- “There’s no such thing as chemical sensitivity, or environmental illness.”
You’ll long to shout warnings from the rooftops about what happened to you, and what you see happening in your support groups every day, but you won’t be able to because you’ll still have PTSD, and talking about the health experiences the whole world seems to deny will make you sound like a paranoid, conspiracy theorist. So, you’ll stop talking about it, and suffer mostly in silence, pretending things aren’t so bad.
Except…things are bad. Every day will be torture, physically and mentally. Every day you’ll want to die, but you’ll cling to life instead, weary and miserable, not quite understanding how you manage to endure this level of illness every single day. Not quite understanding how anything could ever be okay again. But you won’t be able to exit this world, because your child needs you – a child who you’ve lost the ability to effectively parent, or enjoy the company of, because of a pharmaceutical-induced illness. A child who sometimes draws angry-looking pictures of you using your laptop and writes, “Mommy is always on the computer”.
“I’m so sorry, honey,” you’ll say. “Mommy is sick and is just trying to figure out how to get better.”
Your small child will grow into a young adult. Much later, you’ll grieve the time you lost with him while in a sickly fog, struggling to work and maintain a semblance of a life. You’ll find yourself making post-death requests to the universe, just in case there is an afterlife, to please let you come back and spend that time with your child. Please let you immerse yourself in those precious, fleeting moments, and enjoy and love him without the weight of illness and misery and constant worry that overshadows any joy life holds.
Every day you’ll miss your former, healthy self. You’ll reread emails you sent people before you got sick, and mourn the person who made quick-witted jokes and used words you cannot recall the meanings of anymore. You’ll think about how the drug altered your once-sharp mind like a chemical lobotomy. You’ll wonder if you’ll ever be okay again.
Post Fluoroquinolone Healing: Unexpected Gifts
One day you’ll decide you can’t endure another second of suffering. You’ll say to yourself, “If I’m going to be sick every last day of my life, I’m going to find some level of happiness again, no matter how minuscule.” So, you’ll begin grasping for anything. One day you might search the internet for humor and laugh a little bit, even though your hands and feet burn and you can’t think straight that day. Or you might notice the color of the trees and the sky on your way to work, and feel struck by their beauty. You’ll enjoy conversations with your child even while you’re sick. You’ll watch funny or uplifting movies.
You’ll begin to learn that happiness can exist alongside your pain, that suffering doesn’t always have to negate your joy. Sometimes, yes, but not always. Because while you hurt, you also live and breathe. You are still alive. You can still notice the beauty in your surroundings, even when your internal world feels unbearable. You can still laugh, even if the next moment leaves you in tears. And you can still love: your family, your friends, kind people in the world…even yourself. Especially yourself. You may feel as though the world has cast you aside, your life in shambles, but you still matter. You are still a person of worth.
Then, a miracle will occur: like a phoenix rising from the ashes, little glimmers of your long-lost self will begin to return. You’ll remember who you are beyond this sickly, lost person. You’ll realize that beyond your suffering lies an untouchable spirit that will always exist. That illness cannot break you. It may seem to at times, but it cannot change who you are at your very core, no matter how much pain or suffering your body is experiencing. This thought will comfort you in inexplicable ways.
You’ll learn that when there is nowhere left to turn, you can always turn within. That no one can take that away from you.
You’ll begin to forgive the people who don’t believe you, doctors and all, for you’ll remember that we all do the best we can with the information we have. You’ll realize that perhaps people can’t face the truth because it will alter the foundation they’ve built their lives upon, or destroy the sense of safety that enables them to continue living in this harsh world of ours. After all, medications are not supposed to cause this level of harm. And when you think about it, MCS does sound like a psychological illness, even though it’s not. But you’ll forgive the people who doubt you, because you may not have believed any of it either, had it not happened to you personally.
One day you’ll realize that gifts have arisen from your struggle – that, ironically, the worst experience of your life allowed you to bear witness to the best.
First, you’ll notice how the people in your support groups exemplify the inherent good of humanity by offering support and friendship, and sometimes even monetary assistance to members in crisis, often persevering through debilitating symptoms to help each other when no one else will. This is a stark contrast to the corruption, greed, and lack of compassion displayed by the pharmaceutical companies who shattered all of your lives. You’ll see how their corruption indirectly bred a deep empathy and compassion among their victims, their darkness transmuted into a light directed toward each other, as well as others who have no idea they could someday fall victim to this level of suffering. To the degree that your ordeal destroyed your faith in humanity, your support group members will renew it.
The second gift will be in recognizing the lessons which surviving hardship brought you – lessons about perseverance, inner strength, self-worth, confidence, humility, compassion, and forgiveness – and realizing you wouldn’t trade the growth born from these lessons, even if it meant reliving your health struggle all over again. (Though you will still long to have learned them less painfully, would that have been an option.) You’ll realize that, paradoxically, your isolating, alienating illnesses indirectly revealed your underlying connection to everyone you share the world with. You’ll know that although you wouldn’t consider illness a friend, it has certainly been one of your most powerful teachers.
Gradually you’ll begin to see better days, and eventually return to an acceptable level of functioning, even though you’ll probably never return to your former state of health. Your experiences will haunt you, though, following you around like storm clouds, threatening to erupt again, sending you back into the depths of hell. But you’ll fervently hope, should that someday occur, that you’ll once again survive.
One day, you’ll even tell your story in spite of the traumas that arise during the telling, knowing that giving voice to your experience may prevent the suffering of others, and add to the chorus of voices fighting to ultimately stop the rampant poisoning of people every day – people who are being hurt and tossed away by chemical and pharmaceutical companies as though their lives are meaningless.
You’ll know that saving even one person from the suffering you endured will be worth the potential disbelief, and even ridicule, that may come your way through the telling of your story. You’ll know that you no longer need anyone else to validate your illnesses, or any of your experiences, for that matter. Because, ultimately, your health ordeal has taught you to stand in your own truth with confidence – no matter what others believe, no matter how they might judge you.
Besides, if you’re strong enough to survive not one, but two invisible, unacknowledged illnesses, you’re strong enough to survive anything.
A Dire Warning
I know…you can’t relate to this third scenario, can you? Unless you’re a member of one of my support groups, you probably can’t. But thousands of us can, and we’re growing in number every day. We each have our own version of the same story. Because we know our stories could someday be yours, we’re fighting tirelessly in a variety of ways to bring awareness to the potentially devastating effects of fluoroquinolone antibiotics.
In fact, since I began writing this, over 40 news reports about fluoroquinolones have sprung up. Word is finally getting out.
My hope in sharing my story is that people research the medications they are prescribed, especially antibiotics, and never take a fluoroquinolone (Cipro, Levaquin, and Avelox) unless all other options have been exhausted. Fluoroquinolones are the atomic bombs of the antibiotic world. None of the other antibiotics on the market can cause permanent peripheral nerve damage and tendon rupture, not to mention the cluster of symptoms I described above. These adverse effects are not as rare as pharmaceutical companies claim. Not only that, but the FDA is not adequately protecting consumers from this multi-billion dollar, profit-driven industry, whose aggressive pursuit of such profits can lead to corruption. Were this not the case, I wouldn’t be telling this story today. Therefore, we need to take more responsibility for our own health and safety instead of blindly trusting the information pharmaceutical companies feed to the FDA and our doctors, because sometimes this information is misleading.
The problems within our modern medical paradigm are complicated and multi-faceted. I wish I knew how to fix them, but I do not. I do know, however, that my individual story is a symptom of major flaws within a system in desperate need of healing. Corporations should not be allowed to destroy people’s health and lives while denying or minimizing it, leaving them to suffer while watching it continue to happen to others over and over again, like a perpetual Twilight Zone episode. A medical system theoretically designed to “first do no harm”, should not dismiss those suffering at the hands of this broken system and label them mentally ill. (Not that there is shame in mental illness; but there IS shame in cavalierly assigning this label while willfully ignoring the truth.) In spite of the incredible, life-saving medical advances in existence today, any system which heals some but destroys others and leaves them to suffer alone is, in fact, broken.
Despite my ordeal, I still believe in the underlying good of humanity. I know we can do better than this.
Speak Up and Speak Out
Collectively, we need to acknowledge that, for all the virtues of modern medicine, there is also a vast dark side. We need to examine the myriad of reasons this dark side exists in the first place, and actively begin to change it.
We also need to change our response to people living with mystery illnesses our medical establishment does not yet acknowledge or understand how to treat, hopefully with more open-mindedness, curiosity, and compassion instead of judgment and dismissive skepticism. Think about this: didn’t most newly discovered illnesses, at one time, begin with a general lack of understanding and acceptance within the medical world? To act as though today’s medical knowledge base is static and impervious to change via new discoveries is misguided and harmful. But every time people – especially doctors – dismiss patients with a condescending disbelief in their illness, clinging tightly to old paradigms, they are effectively halting further scientific understanding for themselves, and potentially the rest of the world as well. They are also denying vital support, empathy, and care to people who suffer.
Please, stop dismissing the people whose lives have been altered by prescription drugs, medical procedures, chemical exposures, or other illnesses which leave them on the fringes of society with little support. Perhaps people with these poorly understood, invisible illnesses are not malingerers after all, or suffering from psychological disorders. Perhaps we’re actually the canaries in the coal mine of our modern world, our plight a warning to all of humanity to please pay attention, and please fix what is broken.
After all, no one is immune. Someday you could find yourself in my shoes, telling a similar story to what feels like thousands of deaf ears, begging the world to listen before it’s too late. And I really, really don’t want that to happen to you.
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.
Hormones MatterTM conducts other crowdsourced surveys on medication reactions. To take one of our other surveys, click here.
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