FQ toxicity

Adverse Drug Reactions (ADRs): We’re ALL at Risk

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adverse drug reactions

I’m lying in my bed, with my arms and legs straight out. I figured out pretty fast that any stress whatsoever on the tendons, makes things worse for days, weeks even. “Stress” includes not only trying to walk or use my arms or legs for any reason at all, but also simply bending my arms, or my knees, or my fingers, in one position for too long. What’s “too long”?  Maybe 3-5 minutes or so. I can’t use crutches or a wheelchair, because both of those involve use of my arms and shoulders and hands, which are also out of commission. I can’t type or use the computer, because every tendon in my fingers, hands, wrists, and arms are affected and severely painful. I can’t hold up a book to read, because the weight of the book is too much and I can’t bend my arms, without increasing the tendon pain. The weight of the sheets on my toes causes severe pain in the tendons there. There must be tendons around the eye muscles too, because it hurts simply to move my eyes. So I lay there in my bed, with my arms and legs flat out, with my head still and my eyes closed, waiting. Waiting for what, I’m not sure. It’s hard to believe that I went jogging and bike riding and swimming only a few days ago. I’m also in shock. How in the world could a simple antibiotic that I took for a simple UTI do this to me?

My Journey into the Frustrating World of ADR’s Begins

In March 2010 I took the antibiotic Ciprofloxacin for a simple UTI, and within days became one of the millions of people in this country who experience an Adverse Drug Reaction (ADR) every year to a pharmaceutical drug that is deemed “safe” for use. My adverse reaction, as extreme as it was, unfortunately is not as “rare” as the public is led to believe. It turns out there were tens of thousands of other people, and possibly many times more that, also suffering from the same and similar reactions as I was as a result of this class of very popular antibiotics. There were no “Black Box Warnings” on my drug insert, and the warnings that were listed on the insert didn’t even remotely accurately describe what I was going through then, and continue to go through today.

I’ve been disabled ever since, often times going months without leaving the house, or even getting out of bed, as a result of those few pills. As I lay there waiting, I didn’t know if I was waiting to die or to live. With no known treatment, cure, or detox, or even any idea of why this happens in the first place to some of us, there was nothing left to do but wait.  Whatever was known about these reactions came from the victims themselves, observations painstakingly accumulated over time, sharing information that was now available on the internet. Pharma, the FDA, and the medical and pharmacy professions were noticeably and conveniently absent in having any knowledge, concern, clue, or curiosity about these reactions and why this happens in some people, or what to do about it. Their role in all this apparently ended the minute I took the drug.

I’ve had plenty of time to lay around and think about things in the past five years, given that I can’t do much else.  And understandably, I’m not too happy about this situation. It didn’t take me too long to figure out that my life, or what was left of it, was simply going to be a nameless, faceless, long lost forgotten statistic when it came to my ADR. There was no help on the way for me from the medical profession, the FDA, or Pharma to help me with my ADR, and as far as I could tell, absolutely no interest in learning anything from it by any of these parties either. And if there was one thing that became quite clear, it’s that everything was skewed in everyone else’s favor but mine when it came to my ADR. My physicians, pharmacists, the FDA, and of course Pharma, didn’t want to even acknowledge my ADR due to culpability and liability issues – which meant none of the numerous physicians I saw even bothered to report my ADR to anyone anywhere or the FDA. Without this acknowledgement, insurance companies didn’t want to pay for any “excessive testing” outside of the basic “Top 40 Diagnoses” screening tests for a non-existent problem. With “nothing wrong” on paper, I was denied any form of disability payments and probably considered to be a hypochondriac and/or malingerer trying to commit disability fraud. Even the legal profession, as hungry as they are for business, wasn’t interested in me once they found out I took the generic, since there is no legal recourse available with generic drugs. Everyone else in this chain of events walked away from my ADR unscathed, except, of course, me. I’m the one stuck living with it every minute of every day, with no assistance, and no end in sight. I’m the one scouring the internet, reading everything I can about my symptoms, reviewing the available research, paying for my own medical testing, looking for something, anything that will give a clue as to what this drug did to me and how to fix it.

The only other thing I can say about this scenario is that I’m actually not alone in my frustration and anger about this. There are millions of people out there who have been harmed by a pharmaceutical drug, vaccine, or medical device, in the same boat I am. Most of us have felt this same sense of abandonment by “the system”. Each one of us does the best we can, trying to figure out how to pick up the pieces of a life destroyed by a pharmaceutical prescribed to us by the medical profession, and deemed “safe” for use by Pharma and the FDA.

We’re All Sitting Ducks, Sacrificial Lambs, and Play Russian Roulette When it Comes to ADR’s

Several issues have become quite clear to me since I got hit with my ADR. First, is that for the most part, everyone, from Pharma to physicians and pharmacists, to end consumers like you and me, accept that ADR’s are a part of the deal. A lot of rules and regulations are in place in a supposed effort to ensure that a pharmaceutical is safe for “most” of the population. And therein lies the unspoken fact. At the end of the day, no matter how much effort has been put into safety, it’s accepted that there will always be some people that will react negatively to a drug. There’s an implicit acceptance, regardless of how unpalatable it might be, that “some always have to be sacrificed for the greater good”. We just hope that sacrificial lamb won’t be us or those we love.

Secondly, is that pharmaceutical use, and their ADR’s, are here to stay. In the US, nearly 70% of the population is on one prescription drug, more than 50% are on two, and 20% are actually on five or more prescription medications.  Between 1990 and 2008, U.S. spending on prescription drugs increased from $40 billion to $234 billion. And this doesn’t even include all the over the counter meds. As a society, “Just Say No” has never worked for any drug, and that includes legal pharmaceuticals. Increasing right along with this pharmaceutical epidemic, are the “serious and fatal event” ADR’s, which have quadrupled in the past decade, even by the woefully inaccurate and under reported FDA records. Every single person reading this is at risk for experiencing one or more ADR’s in their lifetime. These ADR’s may be mild and transient, or severe, disabling, and long term or lifelong. They might even be those “fatal events” the fast talking monologues on the drug commercials always warn you about. The point is, no one reading this is safe or exempt from them.  Even people who are very “anti-Pharma” may find themselves on the operating table in the ER someday, being given any number of pharmaceuticals without the opportunity for “informed consent”. We are all at risk, and basically sitting ducks when it comes to ADR’s. I rarely took any medications or supplements, and had only taken antibiotics a few times in the first 50 years of my life. Despite that, I let my guard down once — it only took a few pills, and there was no going back from that mistake. I read the drug insert carefully, which talked about how a little transient mild nausea or GI upset might be the worst ADR, and further on down, mentioned “if you develop a pain in your Achilles tendon, call your doctor”. There was no hint in these warnings that these symptoms could be so extreme, permanent, disabling, and that “my doctor” had never heard of it and had no clue what to do about it either.

Third, is that pharmaceutical companies of course want to minimize, downplay, and outright deny ADR’s because they don’t want to open themselves up to culpability and liability issues and lose profits. From the limited “safety studies” that Pharma does on a drug pre-market, to “publishing bias” of only publishing research studies with data in their favor, to minimizing and hiding the adverse effects as they sell their products to the medical profession and us, Pharma does all they can to get a drug to market and profit from it. Once the drug gets to market, the big experiment occurs, as the drug is unleashed en masse on the general population. For those taking the drug, it’s essentially a game of Russian Roulette, no matter how “informed” you are. At that point in time, if things go wrong, it usually takes tens of thousands, hundreds of thousands, or millions of people suffering severe ADR’s before any action, if any, is taken (think Thalidomide, DES, and more recently, Vioxx). YOUR life may be wrecked, but it’s no big deal to Pharma, the FDA, or even your doctors. If you experience a severe ADR, their lives will continue on, while your life becomes just another long lost statistic, simply considered the “cost of doing business”.

Pharma: The Untouchable Behemoth

It can seem pretty hopeless at times. Physicians and pharmacists get their extremely biased information on the drugs they prescribe directly from Pharma via Pharmaceutical Sales Representatives. These reps get more training in marketing and selling, than in knowing anything about the products they’re selling. If the more curious and ethical physicians actually do take the time to look up the research, they will see biased research studies funded by Pharma, all minimizing the risks while highlighting the benefits. The FDA, who relies on Pharma to do the research studies and present the findings on safety and efficacy of drugs, as well as relies on Pharma as a large source of funding for their own organization, is equally in the dark and basically impotent, as they now see Pharma as their main client to serve, and not the public. And we, the people?  We’re the sacrificial lambs, the sitting ducks, and the true massive post surveillant “research study” when we play Russian Roulette with safety and efficacy of any drug Pharma puts out. The icing on the cake for Pharma is that they can laugh all the way to the bank, no matter how many people are harmed, in the meantime. If, despite Pharma’s best attempts, a drug indeed is found to be unsafe, their main goal is to sell the hell out of it to keep bringing in profits until they are absolutely and overwhelmingly forced to remove it from the market.

This is nothing really new. If you live long enough, or read history, you will see the same old story over and over again, whether in the pharmaceutical industry or any other industry. And if you think your doctor or the medical profession is any smarter than the rest of us, think again. As I discussed here, in another writing:

“My own mother was “prescribed” cigarettes – yes, that’s right – as part of her “prenatal care”, she was told to start smoking by her doctor while pregnant with my younger sister “to prevent hemorrhoids”.  We can laugh, or be aghast now at such a notion, but an entire generation, including the medical profession at the time, was repeatedly brainwashed by the corporations manufacturing these products, and they would leave no stone unturned in promoting the “health and safety” of their products for the sole interest of their own profits.”  (See:  here, and here.  And for anyone wondering, the ‘science’ behind this is that nicotine constricts blood vessels.  And yes, this is exactly how my mother started smoking at age 32).

I provide this example simply to highlight the fact that medical professionals are subject to the same corporate and cultural forces that we all are.  Drugs that would never be blithely and indiscriminately prescribed today, such as Thalidomide, DES, Vioxx, and many others were routinely prescribed by physicians in the not too distant past, and this apparently includes “cigarettes” as well. The point being, is the drug your doctor prescribing you today the result of a judicious, prudent, and well thought out approach deemed absolutely necessary for your health?  Or is it simply the latest fad promoted by Pharma, the next big blockbuster drug for their coffers, being offered you even when safer, less expensive, or better alternatives may exist?

“Your doctor” is subject to the same forces everyone else is, and they happen to be a very important target for Pharma in particular.  Most physicians are honorable, trying to do the best they can with the information they have, but the fact is, they might not know any more than you do if what they’re selling (prescribing) you is a necessary and lifesaving drug, or a ‘cigarette’ of a drug. It turns out, when it came to my particular ADR, plenty of medical professionals have been hit and suffer from the same ADR’s. I sure wish I had known that before I took the drug, because now I’m one of them.

The odds are overwhelmingly in Pharma’s favor and against us.  And despite everything I’ve written, I’m not really “anti-pharmaceutical”.  I’m well aware pharmaceuticals and modern medicine have helped and saved many lives. I happen to love both science and medicine, and I’m a big believer in using the fruits of ethical, curiosity-driven science and medicine in its truest, most honorable and noble form — to improve the health and welfare of individuals and society as a whole. The problem is, that’s not a description of current day Pharma. Phrases more apt to come to mind with the word “Pharma” now include:  Corporate Greed, Profits at All Costs, America’s legal Drug Cartel, White Collar Drug Dealers, and  “Pharmageddon”. The medical profession is allowing themselves to be reduced to Pharma’s “drug pushers”, pushing pills for everything and everybody even if they’re not necessary or downright dangerous, with drugs as the first and sole option offered even when other options such as healthy lifestyle changes can help.

Given these odds, is there anything we can do to protect ourselves? Is there anything we can do to demand change?

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This article was first published on June 8, 2015.

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Musings of a Heretic Patient: Floxed and Fed Up

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fluoroquinolone toxicity

After mulling it over for quite some time, I wanted to comment on something we all encounter much too frequently in our floxed lives. That is, specifically, the negative experiences we are often forced to endure with our doctors. As patients, harmed by a widely over prescribed drug, we are often dismissed whenever we propose a connection between fluoroquinolones and the adverse side effects we experience as their patients.

I cannot even begin to quantify the level of frustration and anger I feel whenever I’ve been confronted with this in my doctors visits. It’s demeaning and demoralizing to be treated as if I am a complete moron for broaching the subject whenever they come up empty on their diagnosis.

At first I chalked it up to ego because after all, THEY are the “experts” and I am just one of the great uneducated with the audacity to question their expertise and search for answers beyond their own. I know what it feels like to be sneeringly, denigrated for my research. To be called a GOOGLE doctor for simply not accepting their non-diagnosis as a diagnosis.

Oh, the times I felt like screaming and pulling my hair out in my doctor’s office. The times I became so frustrated I wanted to overturn the tables and rip those stupid charts from the walls are just too innumerable to count on my flox journey.

Laying the blame on ego alone was the simplistic answer but something always niggled at me every time I left the office, depressed and defeated.

Why was I always making excuses for what was so obviously a rude and demeaning attitude towards my quest for answers? Why were all my doctors so hostile to my input and so dismissive of my efforts at educating myself? What lay beneath this dismissal of my pain and the destruction of my body that even they could not deny?

Today it happened again and it sparked me into writing this post.

The Heresy of Questioning a Doctor

I have come to learn that a few of the common tactics used by doctors can be identified. Many of them are being used to work against us when confronting a doctor’s assessment of our specific issues.

The first one is utilizing our lack of a formal medical education to minimize our efforts. It’s the most obvious use of the power dynamic they conjure to silence us. Questioning a doctor is an anarchistic act. It challenges the authority of the empirical medical model, the one we’ve been programmed from childhood to believe has all the answers. The one domain that is so sacrosanct in our society that questioning it is bordering on the heretical and places you squarely outside the acceptable behavior circle.

I have come to accept that I am now a heretic and so is anyone who steps outside the medical status quo in their search for answers. Like any heretic, I need to be prepared for the onslaught of disapproval and derision I might receive for questioning the medical gods. I need to remember to arm myself psychically and mentally for every visit. The fact that I must do this saddens me. It illustrates just how meaningless and hollow the Hippocratic Oath has become to our modern medicine men.

“Nor shall any man’s entreaty prevail upon me to administer poison to anyone; neither will I counsel any man to do so.”

Plausible Deniability in Medicine

Another tactic used by physicians to dismiss patient concerns is plausible deniability. Physicians now rely on plausible deniability to explain away their non actions or worse. It is the deliberate and destructive act they use against the very people they have sworn to heal. It’s also known as covering their asses. Knowing this and accepting that this is the norm rather than the exception has been a bitter pill for me to swallow but imperative to retaining my sanity.

And Then There is Gaslighting

Another thing I’ve come to recognize as a tactic is what I call medical gaslighting. Gaslighting is a very effective but abusive form of diversion. In this case, a physician utilizes an established (though questionable) psychological diagnosis as a convenient way of absolving their non actions in your case. It also serves to stopgap any further digging into causal links and diverts attention away from the physicians own culpability. How many times have I been told that my symptoms are all in my head? Too many times to count. And since my symptoms don’t fit any known disease model, I must be suffering from a psychological malady.

This has now become a part of the DSM-5 lexicon of psychiatric diagnosis and poses further harm to people like myself and anyone whose symptoms cannot be easily pinpointed to any one specific disease. If anyone, who like myself has been previously diagnosed with a mental illness (depression, PTSD) these diagnoses further serve to de-legitimize the patient’s experience.

We need to be aware that even when we have the hard evidence of medical research to back up our claims, we will be challenged and possibly labeled. If we refuse to accept this knee jerk assessment or the drugs they will inevitably prescribe to treat our “real” issues we might find ourselves tagged with the non-compliant stamp.

I write this as a warning to everyone who finds themselves on this page. You might hit some very daunting, brick walls along this journey but know that you are not alone. One day we will be vindicated, this crime will be exposed, and Big Pharma and all colluding physicians and corrupt governmental agencies will be brought low.

For those who have been blessed with that one special physician who listens and learns, I am grateful to see that ethics still exist. It’s heartening to know that there are doctors out there who can put ego and material gain aside and remain open to their patient’s body awareness and desire for healing. Sadly, those doctors risk becoming medical heretics too, banned and derided by the more conventional experts, the same experts that employ the tactics listed above.

In the end, I know we will win and a big part of that victory comes from the massive amount of support and experience we find on our support pages. Thank you to all my fellow floxies. You are the vanguards of this battle and close to my heart.

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This post was published originally on Hormones Matter on October, 2015.

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Fluoroquinolone Poisoning: A Tale from the Twilight Zone

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Kristin Weber

Imagine the following scenario: you’re sick with an ailment that prompts you to visit your doctor. During the exam you’re found to have a bacterial infection, so you’re prescribed a course of antibiotics. You take your medication and experience very minimal side effects. Your infection clears up, and you return to normal life. We’ve all been there many times, I’m sure.

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
  • Achiness
  • Muscle weakness
  • Tendon rupture
  • Tendonitis
  • Central nervous system events
  • Nervousness
  • Agitation
  • Insomnia
  • Anxiety
  • 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.

To sign up for our newsletter and receive weekly updates on the latest research news, click here.

What Else Can I Do To Help?

Hormones MatterTM is completely unfunded at this juncture and we rely entirely on crowdsourcing and volunteers to conduct the research and produce quality health education materials for the public. If you’d like help us improve healthcare with better data, get involved. Become an advocate, spread the word about our site, our research and our mission. Suggest a study. Share a study. Join our team. Write for us. Partner with us. Help us grow.

To support Hormones Matter and our research projects – Crowdfund Us.

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Postpartum Fluoroquinolone Toxicity

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Sarah Flynn

In March of 2011, two months after the birth of my daughter, I experienced a bout of acute illnesses. My birth experience had been difficult, delivering five weeks early via emergency C-section after my water broke at 35 weeks gestation. My recovery was complicated by the need for an appendectomy just six weeks later. As if two abdominal surgeries weren’t enough, all of the trauma apparently dislodged two kidney stones in my right kidney. I woke up one morning with blinding pain in my stomach that migrated to my back and my side. I had passed a kidney stone once before, so I immediately knew what was causing the pain. Many who have experienced a kidney stone compare it to the pain of childbirth; I would argue that the pain is actually much worse. Unable to manage the pain on my own, I was taken to the emergency room for treatment. In the ER I was given IV pain medication and sent home with a short-term prescription for hydrocodone. I was also sent home with a prescription for a seven day course of the antibiotic Cipro. This medication was given to me as a preventative measure in case the stone ripped through my ureter.

Initial Symptoms of an Impending Cipro Reaction

About 48 hours after beginning the Cipro, I noticed an unusual feeling of nervousness. I was also having trouble regulating my internal body temperature. I would either be sweating profusely or so bone-chill cold that the only relief I could get was standing in a hot shower. I attributed these symptoms to being overwhelmed by the beating my body had taken in the last two months all while trying to care for my two month old preemie daughter. The anxiety was met with severe insomnia, and after a few days of almost complete sleeplessness (on top of the getting up with a newborn every few hours), I saw a general practitioner at a local walk-in clinic to get some advice and hopefully some relief. The doctor agreed that I was likely overwhelmed by all that had happened on top of adjusting to caring for a newborn. However, she also mentioned that I should stop taking the Cipro, and that “Cipro can do funny things” to some people. I took her advice and stopped the Cipro. Within a few days I started to feel more normal, and I shrugged off the experience. Little did I know my nightmare was just beginning.

Neurocognitive Deficits and Cipro

Two weeks later I returned to work. I was staring at the computer screen working on a research project when I noticed that my vision had become blurry. I went to the bathroom and put saline drops in my eyes when I discovered that my pupils were enormous. My eyes looked completely black instead of the normal light greenish-blue hue. I decided to leave work and go home early, and I had to squint and blink furiously just to keep my car on the road. When I returned home, my husband noticed my eyes and told me to lie down. I was exhausted, yet sleep would not come.

Cipro and the Central Nervous System

In the next few months I deteriorated rapidly, suffering from extreme anxiety, muscle twitches, myoclonus jerks, sweating, chills, weakness, tendonitis in my wrists, confusion, PVC heart arrhythmia, among roughly 30 other terrifying and painful symptoms. The worst of them, by far, was the completely intractable insomnia. I would go days at a time without being able to sleep even for one minute, finally crashing for two or three broken hours, and then the cycle would repeat itself. I sought out several doctors who ran tests after test and found nothing. I was finally steered toward psychiatry, where I was diagnosed with “anxiety” and given a slew of prescription psychiatric medications. Luckily, I declined to take most of them.

Continued Deterioration and Delayed Reactions to Fluoroquinolones

Weeks went on and my symptoms did not abate. I decided to leave my job and stay at home to take care of my precious baby daughter, the only thing giving me hope or the will to keep moving forward at that point. I was simply too sick to work, and my work environment was extremely stressful during that time. I was still very confused as to what had befallen me. After months of suffering, I remembered the doctor who had advised me to stop the Cipro. One simple Google search of “Cipro side effects” opened literally thousands of pages of information, with stories exactly like mine, of delayed reactions and unexplainable, debilitating symptoms. Because the severe symptoms were delayed for weeks after I stopped the Cipro, I never attributed my symptoms to this medication. I was unfortunately unaware that close proximity of the effect was not a necessary condition for causation when it came to pharmaceutical side effects.  However, as I began to research this class of antibiotics, called fluoroquinolones, I became aware that the most severe reactions are often delayed.

Fluoroquinolone Toxicity

I saw the top expert in the medical field on fluoroquinolone adverse reactions, and he diagnosed me with fluoroquinolone toxicity syndrome after a careful assessment. Almost a year after my first symptoms appeared, I finally had a name for my suffering. It took me almost two and a half years to recover ninety percent. My recovery focused on nutrition, stress management, and the power of positive thinking. Instead of taking medications, I found a sleep psychologist and underwent CBT for insomnia, and it helped dramatically. I still have symptoms, including the PVC arrhythmia, transient insomnia and peripheral neuropathy, but I consider myself very lucky. Many individuals with fluoroquinolone toxicity are disabled for life. You can read more about fluoroquinolone (FQ) toxicity here.

The pharmaceutical companies will lead you to believe that these side effects are rare, and therefore insignificant compared to the population of people that the drugs help. However, the truth is that most medication side effects are never reported, if they are even attributed to the drug at all. In actuality, doctors are generally uninformed about the complex array of side effects that these drugs can cause and are often unwilling to attribute patients’ symptoms back to the medications that they themselves prescribe. It is unlikely that we have an accurate picture of the side effect profiles of many prescription drugs, not just fluoroquinolones. In fact, many have speculated that a variety of idiopathic illnesses such as fibromyalgia are not organic illnesses but are all manifestations of fluoroquinolone toxicity or other adverse medication reactions. Each individual tends to have a unique threshold for toxicity, so it is entirely possible to have taken these antibiotics before without trouble only to experience a severe adverse reaction the next time they are taken. Since my diagnosis, it has become my mission to educate my friends, family and the world on FQ toxicity. Knowledge is power, and sometimes it can even be life-saving.

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.

To sign up for our newsletter and receive weekly updates on the latest research news, click here.

What Else Can I Do To Help?

Hormones MatterTM is completely unfunded at this juncture and we rely entirely on crowdsourcing and volunteers to conduct the research and produce quality health education materials for the public. If you’d like help us improve healthcare with better data, get involved. Become an advocate, spread the word about our site, our research and our mission. Suggest a study. Share a study. Join our team. Write for us. Partner with us. Help us grow. For more information contact us at: info@hormonesmatter.com.

To support Hormones Matter and our research projects – Crowdfund Us – Buy an Unsubscription.

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