Cipro - Page 2

Becoming the Person I Hoped I Was

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When life changes its mind about the size of the mountain you’re climbing, you will suddenly find that you have some decisions to make.  My husband got sick.  He was hit, badly, with long term side effects stemming from a short course of Ciprofloxacin (Cipro), a fluoroquinolone antibiotic. The side effects from Cipro can be a horrific and long term, but are often invisible. Blood tests come back normal, neurological exams reveal nothing of note, the sufferer often looks fine, and worst of all, most doctors are completely unfamiliar with these adverse reactions. This of course means that most people are completely unfamiliar.  We certainly were.  But without a doubt my husband was sick, and I had some decisions to make. The biggest decision I at first didn’t know I was making (daily, even minute by minute) continues to be this: what kind of person am I going to be?

I have unknowingly been faced with this decision before. Two years ago, James, the husband of a coworker got sick. Really sick. He had stage four esophageal cancer, and it was very unlikely that he would survive long after the “last hope” surgery.  His wife was not in a position to stay home and take care of him and she had to continue working full time. They also had two elementary age girls. Not much could be worse.

After his surgery, James had trouble getting enough calories. I like to bake so I made him some cookies, and a couple of chocolate cakes. Actually, what I really did was make cookies and cakes for my future husband and for parties, but I made sure to double the batches so I could give some to James. This was the extent of my support. James and his wife expressed their gratitude far beyond the reality of the gesture. This attention embarrassed me a little, but mostly made me feel rather pleased with myself. Yes! I am one of those people who bake when my acquaintances are ill!  What an amazing, empathetic, wonderful person I am. I did not go so far as to credit myself with James’s survival and subsequent return to health, but I allowed for how the chocolate probably helped.

I had made the decision to act on my compassion. A little. Well, not so very much actually. Almost literally the crumbs from my kitchen. Yet I now understand the level of gratitude around a few cookies. Today similar small gestures from the people around me stun me with appreciation of my own. I understand it now. My friend makes enough extra soup so that I can have lunch for three days. My coworker orders the annual holiday craft for my students without bothering me with the details. Another friend texts to see if I need anything at Trader Joes. “I’m going later, what can I get you?”  These moments stick.

Cipro toxicity isn’t like cancer. It isn’t something that people already understand to be a struggle. Like many chronic conditions, it can become invisible to those not suffering. It is easy to ignore something (or someone) who disappears from daily life, without any official medical diagnosis. So easy in fact that this is many people’s natural inclination. To ignore or minimize. This was my inclination.

On the best days the gratitude I now feel for small acts of kindness can seem a fair trade for the unawareness that formerly accompanied our good health.  The rarity of these acts makes them more powerful. Many people who know our story ask my husband how he is, but more often people don’t. Ever. I suspect these people do care (or at least I am deciding to believe they do). So what is the disconnect?

From my own experience, reaching out to help anyone in need takes an ability to look beyond, briefly, the ever present squawk from the needs of your own life. That was me.  Since my husband has been sick I have heard from many people about their own struggles. How did I not notice my sister has been fighting through horrible digestive issues? How did I miss my friend having constant headaches for four months (after taking Cipro, by the way!)? How did I miss my coworker’s father passing away?

When I did used to look beyond my life, I would often be immobilized by anxiety. There is a real courage involved in moving past the fear and discomfort of saying something wrong. In the past I lacked that courage. I justified with thoughts that generally began, “I don’t want to remind her of….”  Really? Did I think there was a moment that she had forgotten that her father had died, her husband had cancer, her head was pounding, whatever? No. It may hide for a moment but she always knows it’s there. What she does not know is that I remembered it’s there. And that I cared. It is the rare person who can push past these obstacles and offer something anyway.  It is the rare moment when they do.

I am also grateful because I believe acts of compassion, small as they may be, give me a glimpse into the very best selves of those around me. My father and sister could not be more supportive. My aunt has been lovely. Our closest friends have rallied throughout. Although I already knew this information about my family, many of the friends I have chosen in my life are turning out to have a depth to them that has not been apparent to me before. Perhaps this was always true and I just never had occasion to see it. Or perhaps this is something that my friends are deciding about themselves, in the same way that I am deciding about myself. Maybe with every decision we make there is an associated change in ourselves. I don’t know. I do know that the way this has deepened my feelings for these people is as if, from the mountain, I thought I was looking at the edge of a lake in the distance. But now after climbing a little higher, it turns out it is the beach of an ocean. What a dazzling view.

Since my husband’s illness began 6 months ago, every person in my life has been presenting me with an unintended gift the moment I started paying attention. The gift of example. Everyone has and is modeling the kind of person I want (and don’t want) to be.  Who do I want to be when the people around me are in need?  Do I want to be the person who texts from the grocery store?  The person who takes over chores without being asked? Or the person who is so unsure of what to say that she says nothing at all? (How many times have I been that person? Too many to count.)  It’s an obvious decision once you’re aware of it. It’s a choice that I did not even know I was making before this experience. Non-action is a decision. Generally it’s the worst decision.

I have come to believe more and more that it is our actions that define us, not our thoughts, our intentions, or even our feelings. Still, I wish I could go back in time two years and smack the feelings right out of myself. The silent self-satisfaction over a chocolate cake… how very shameful. There is no way to go back and offer to babysit, or cook a meal, or shop, or just ask (frequently) how things are going, and what can I do for you today to help? Or better, just do something that needs to be done, without asking. I can’t go backward and do that. Most disgraceful for me is that cancer is a very “visible” disease and I did my best to not see it. There is only one way to atone. Open my eyes for the rest of my life, and act on what I see, and even what cannot be seen. It is not a coincidence that every time I see James, he asks if there is anything he can do for us. My husband is sick and I am here now. Life is full of decisions. Today I am deciding to be grateful for the chance to have a do over. From now on I get to decide to be the kind of person I always hoped I was.

 

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This post was originally published in December of 2013. 

Glabrata – A Deadly Post Fluoroquinolone Risk You’ve Never Heard About

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I would like to share information on a little known, rare infection that all too often is overlooked or misdiagnosed, by the medical profession. It is an infection that shows no mercy to its victims and is deadly  in 67 to 90% of the cases, depending upon the severity of the infection. It is called Candida Glabrata (C.Glabrata), and I, like thousands of other victims, have had to learn the harsh realities of what this infection is capable of. I have also learned that it is an infection that our medical profession knows little about and our scientific community knows even less about how to beat it. In 2007, it was listed as the fourth leading cause of bloodstream infection in United States hospitals. The fact that the medical professionals know so little about how one contracts C. Glabrata, who gets it and when to look for it, persuaded me to speak out about this, so others do not suffer as I am.

What is C. Glabrata?

First C. Glabrata is a fungus from the Candidias family, which is the same family of candidias albican  (the yeast infection that most people are familiar with), however, there are several other forms in the Candidias family. These other forms are actually known as non-albicans and they are much more serious types of fungi. There are approximately five different species in this category with Glabrata being the most serious form.

What makes Glabrata so serious is the fact that it is only one of a few fungi that do not have hyphae, which are like the tenticles. Without hyphae, it is very difficult to culture, biopsy or see under a microscope. Due to the fact that it cannot be easily diagnosed, it is usually is not discovered in a person until they are very sick and by then it is a race against time to save the individual. The other problem with fungi without hyphae is that they are able to morph and adapt for survival. This means they have the ability to live in both alkaline and acidic environments. This is the part that makes them so deadly, because we only know how to kill fungus by changing the PH balance of the environment to basically make the living conditions unconducive to their life cycle. So, when you have a fungus like C. Glabrata that cannot be easily detected, diagnosed and then treated, you have what is known by the CDC as a deadly fungal infection.

The History of Glabrata

The fortunate thing about Glabrata is that it is a very rare form of fungus that is almost never seen in the general population. It was discovered during the 80’s when the AIDs population came to awareness. Prior to that, it had never been found in humans. Once the HIV population became infected, the fungi were impregnated in hospitals all over the country. Through the 90’s, the only people identified with this infection were the critically ill and immune compromised population, end stage HIV or end stage cancer patients in ICU units. With compromised immune systems these patients had no resistance to the fungus, and unfortunately, the mortality rate was 100%.

By the early 2000’s a new population of people were beginning to show up with C. Glabrata, only now it had moved beyond the immune comprised HIV and end-stage cancer patients. A study in 2010, found that 73% of C. Glabrata cases occurred in patients previously given fluoroquinolones. This new, previously healthy group of people falling ill to Glabrata had all been treated with a broad spectrum fluoroquinolone antibiotic often in conjunction with a steroid. Steroid treatment alone is a risk factor for the C. Glabrata infection. According to my current physicians, when fluoroquinolones are combined with steroids, the risk for contracting C. Glabrata increases significantly.

Research shows that the fluoroquinolones wipe out all gut flora (good and bad). When combined with immunosuppressive steroids, the patient’s ability to fight bad bacteria and fungus is compromised. When all the gut flora are killed, the first flora to grow back are those that are the strongest and most resilient. Much like weeds in your garden, fungus and bad bacteria grow at a faster rate and are stronger mutants than the good bacteria. If the patient was also prescribed steroids, their own immune system can no longer come in to fight off the bad gut flora. This leaves the gut vulnerable to serious infections especially fungal ones like Glabrata. Fluoroquinolones are one of the most potent gut flora destroyers on the market. There is no other class of antibiotics that so totally annihilate gut flora to the level that the fluoroquinolones do. Combining fluoroquinolones with steroids is a recipe for disaster.

In sum, there are only four ways to develop a C. Glabrata infection, end stage HIV, end stage cancer, patients with neutropenia – a genetic or chemo-induced condition that limits white blood cells needed to protect the body from fungal invasion – or by using a broad spectrum antibiotic, like the fluoroquinolones combined with a steroid.

Diagnosing Glabrata – Why So Many Victims of Glabrata Die

Glabrata is very difficult to diagnose, leaving the infection to take hold before it is recognized. The Glabrata fungus does not have hyphae and does not present like all other forms of candidias. This fungus does not produce a white cheesy like curd discharge from the gut / stool, vagina or penis. Instead, it produces a milky white to grayish thin discharge, often seen with bacterial infections. It also produces minor to severe swelling of the tissues and erythema (redness). The infection causes horrific burning (often described as grinding glass into the tissues and then pouring acid on them) with very little itching.

In the early stages, before a doctor thinks to look for C. Glabrata, the infection is frequently misdiagnosed as a bacterial infection. The patient is put on antibiotics; often the same antibiotics that created the susceptibility to the infection to begin with. When these fail again and again, the doctors are often at a loss as to what is going on, especially if the person was a young, healthy individual prior to being given antibiotics with steroids. Since most physicians have been trained to only look for Glabrata with HIV or seriously ill cancer patients, they never think to look for it. It usually takes until the person becomes critically ill with the infection before they realize that it is a fungal infection, at which point the doctor will order specific tests looking for a non albican fungus. In more than half of all cases of Glabrata it is not realized until autopsy. These are not like other fungal tests because they have to be grown in special agar (petry dishes) and then stained with special stains and then looked at under high powered microscopes. The final drawback is that this fungus needs 6 to 8 weeks to grow out, which costs precious time that most patients do not have.

Treating Glabrata

Once Glabrata is diagnosed the next hurdle is how to treat. Currently, there are only a few drugs that have any potential to kill it: Diflucan (fluconazole), Caspofungen and Amphotericin B. Each is problematic. Diflucan has to be used at ten times the normal level for months on end, to kill C. Glabrata. Most people are unable to tolerate this course of treatment and in 99% of cases it fails and in many cases, the fluconazole induces resistance to it and other azole fungicidesCaspofungen or microfungen, are additional options. They can cause serious liver and kidney problems, leading to failure of one or both organs. These drugs work in about 70% of all cases, but again must be used for months on end and many patients are unable to tolerate the treatment.

The last drug known to kill C. Glabrata is Amphotericin B. This drug is only used when the person is on their death bed because it is so toxic that it causes acidosis within minutes of being administered. Over 90% of patients go into multi-organ failure and die within three hours of infusion (discussions with my doctors). This drug too must be used for months on end to kill it.  Amphotericin B has a 90% success rate if the patient can survive the drug itself.

In very serious and resistant cases, Flucytosine is combined with the Amphotericin B. Flucytosine is thought to open the cell walls and lets the Amphotericin B in to kill. Flucytosine is an old chemo drug that is quite potent drug. When combined Amphotericin B, the results can be deadly. These are the only drugs known to treat this fungus.

Glabrata Becomes Resistant

As if Glabrata isn’t difficult enough to diagnose and treat, the fungus is very adaptive. If the patient survives the drugs, the fungus can, and often does, become resistant to the drug that it is being treated with, leaving the person with no options to kill it. This means that you get ONE shot with a medicine because it will become resistant the second time around. Glabrata has to be killed totally. If not and it returns, there is no treatment.

But as a fungus, Glabrata does not die on contact with the medicine. Let me explain this in an easier way. Look at it like this a bacteria is like a spider or bug, when you spray it with Raid it stops dead in its tracks and dies right there where you sprayed it. With fungus it is like a weed in your yard, when you spray it with weed killer the first day it begins to droop the next day it turns brown and by the third day it falls to the ground. If you then then pull the weed up and if you did not get the roots too within a week you will have a new weed back again. Fungi work in the same way, which is why it must be treated for months on end. Fungal infections are notoriously hard to treat and some of the most deadly infections to have. This is why Glabrata is fatal in 90% of all cases.

I Have a Glabrata Infection

I have a Glabrata infection and am fighting for my life. How did I contract this deadly fungal infection? I was prescribed Cipro plus a steroid for a misdiagnosed and assumed GI infection. I had a stomach bug, likely the flu, but since I have a diagnosis of IBS and the doctor was unable to see me for four days, she suspected I had a small intestine bacterial overgrowth (SIBO). I was prescribed an antibiotic, Cipro, plus steroids. That is, I was prescribed these meds on the assumption that I had a bacterial infection. I did not.

Three days after starting Cipro, I fell ill to Cipro toxicity. My gut flora were wiped out, I just didn’t know it yet and neither did my doctors. A week later, I found out that I never had an infection and didn’t need Cipro to begin with, but it was already too late for me. In the coming months, the GI bleeds began and other GI issues that would be misdiagnosed as Crohn’s Disease and bacterial infections ensued. It was not until last month that my doctors determined that all my problems were due to a deep seeded or disseminated infection with Glabrata.

We tried the Diflucan, which failed miserably. My WBC count and neutraphil count rose and I was now in serious trouble. We put a central line in and started the microfungen. After the first seven days, my counts dropped drastically, but by day nine, I began to step backwards. The fungus was morphing to survive and was becoming resistant to the drug. We are now looking at Amphotericin B. We will give it two more weeks and then make that call but it is not looking good right now. My symptoms have begun to ramp up again. I know the odds are against me with less than a 10% cure rate, I am fighting an uphill battle but I need to win this one for my life!

Why I Am Telling My Story

Patients must understand the dangers of this class of drugs especially when combined with steroids, because many doctors do not! Fluoroquinolones are the most commonly prescribed antibiotic in the US and combining them with steroids seems to happen frequently.

Also know that 78% of the time Glabrata starts in the gut. Other times it starts in PIC and central lines. In either case, one initiated, it infiltrates the prostrate for men and the vagina for women. It has been known to seed itself any organ throughout the body. If you are suffering with an infection in any of these areas that does not respond to antibiotics and you are also suffering with GI issues, you need to ask your doctor about checking you for a fungal infection, especially if you have used a fluoroquinolone antibiotic with a steroid prior to the onset.

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Featured image: GMS stained skin punch biopsy demonstrating fungal spores of C. glabrata, eScholarship, University of California.

This story was published originally in December 2013.

Fluoroquinolone Poisoning: A Tale from the Twilight Zone

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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.

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What Else Can I Do To Help?

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Fluoroquinolones 101 – Antibiotics to Avoid

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Fluoroquinolone antibiotics, Cipro, Levaquin, Avelox, etc. are broad-spectrum antibiotics used to treat a variety of infections, from urinary tract infections to anthrax and everything in between.  The first quinolone created was Nalidixic Acid which was discovered by George Lesher in 1962.  (Nalidixic Acid was added to the OEHHA prop 65 list of carcinogens in 1998.) Cipro (ciprofloxacin) is a second generation fluoroquinolone patented in 1983 by Bayer, Levaquin (levofloxacin) is a third generation fluroquinolone  patented in 1987 by Ortho-McNeil-Janssen (a division of Johnson & Johnson), and Avelox (moxifloxacin) is a fourth generation fluoroquinolone patented in 1991 by Bayer.

Fluoroquinolone Antibiotics – Still on the Market

Of the 30 quinolones that have made it to market since the 1980s, all but 6 have either been removed from the US market or have severely restricted use.

The fluoroquinolone antibiotics that are still on the market are some of the most commonly prescribed antibiotics. Per the FDA, “Approximately 23.1 million unique patients received a dispensed prescription for an oral fluoroquinolone product from outpatient retail pharmacies during 2011,” and “Within the hospital setting, there were approximately 3.8 million unique patients billed for an injectable fluoroquinolone product during 2011.”

When used properly, such as in cases of life-threatening hospital acquired pneumonia, fluroquinolone antibiotics can save lives.

Fluoroquinolone Antibiotic Side-Effects and Adverse Reactions

When used improperly, fluoroquinolone antibiotics can needlessly cause devastating side-effects.  Devastating side-effects can also occur when fluoroquinolone antibiotics are used properly, but the devastation can be justified by weighing it against the alternative – death.  In 2001, Dr. Jay S. Cohen published an article on the severe and often disabling reactions some people sustained  as a result of taking a fluoroquinolone antibiotic.  Dr. Cohen says,

“It is difficult to describe the severity of these reactions. They are devastating. Many of the people in my study were healthy before their reactions. Some were high intensity athletes. Suddenly they were disabled, in terrible pain, unable to work, walk, or sleep.”

Dr. Cohen’s study of 45 subjects suffering from Fluoroquinolone Toxicity Syndrome, a name that I’m pushing for, (without an official name, it is difficult get the word out) showed that they had the following symptoms:

  • Peripheral Nervous System: Tingling, numbness, prickling, burning pain, pins/needles sensation, electrical or shooting pain, skin crawling, sensation, hyperesthesia, hypoesthesia, allodynia (sensitivity to touch) numbness, weakness, twitching, tremors, spasms.
  • Central Nervous System: Dizziness, malaise, weakness, impaired coordination, nightmares, insomnia, headaches, agitation, anxiety, panic attacks, disorientation, impaired concentration or memory, confusion, depersonalization, hallucinations, psychoses.
  • Musculoskeletal: Muscle pain, weakness, soreness, joint swelling, pain, tendon pain, ruptures.
  • Special Senses: Diminished or altered visual, olfactory, auditory functioning, tinnitus (ringing in the ears).
  • Cardiovascular: Tachycardia, shortness of breath, hypertension, palpitations, chest pain.
  • Skin: Rash, swelling, hair loss, sweating, intolerance to heat and\or cold.
  • Gastrointestinal: Nausea, vomiting, diarrhea, abdominal pain.

When a fluoroquinolone antibiotic triggers a toxic reaction in a person, multiple symptoms are often experienced. I experienced all of the symptoms that are italicized.

Fluoroquinolone Antibiotic Damage – Technical Aspects

Fluoroquinolones are eukaryotic DNA gyrase and topoisomerase inhibitors very similar to many antineoplastic agents (source).  What this means in plain English is that these drugs work the same way as chemotherapeutic drugs; they disrupt DNA and lead to destruction of cells.  A recent (2013) study conducted by a team of scientists at the Wyss Institute for Biologically Inspired Engineering at Harvard University Studies showed that Ciprofloxacin, along with a couple of other non-fluoroquinolone antibiotics, causes oxidative stress and mitochondrial malfunction. A 2011 study published in the Journal of Young Pharmacists found that, “There is significant and gradual elevation of lipid peroxide levels in patients on ciprofloxacin and levofloxacin.”  They also found that “There was substantial depletion in both SOD (superoxide dismutase, “a free radical scavenging enzyme”) and glutathione levels” and that “On the 5th day of treatment, plasma antioxidant status decreased by 77.6%, 50.5% (and) 7.56% for ciprofloxacin, levofloxacin and gatifloxacin respectively.” The study also notes that administration of fluoroquinolones leads to a marked increase in the formation of Reactive Oxygen Species (ROS) and that “reactive free radicals overwhelms the antioxidant defence, lipid peroxidation of the cell membrane occurs. This causes disturbances in cell integrity leading to cell damage/death.”

How Many People are at Risk?

The exact rate of adverse reactions to fluoroquinolones is difficult to determine.  Studies of adverse reactions to fluoroquinolones have noted that, “During clinical trials, the overall frequencies of adverse effects associated with (fluoroquinolones) to vary between 4.4 and 20%.”  Just the fact that the spread is so large, a 15.6% spread in frequency of adverse reactions is a HUGE difference, implies that the actual occurrence of adverse reactions is difficult to establish or unknown.

With the FDA figures above noting that 26.9 million unique patients were given fluoroquinolones in 2011, if you just take the conservative adverse reaction figure of 4.4%, you’ll get a horrifying number of people with adverse reactions in 2011 alone – 1,183,600 people.  20% of 26.9 million is 5,380,000 people adversely effected.  That is scary.  Those numbers are truly frightening given the severity of the adverse effects described above.

Fluoroquinolone Toxicity Syndrome

I see fluoroquinolone toxicity everywhere, and even I think that those numbers are high for severe, disabling reactions like mine where multiple symptoms develop simultaneously.  Not everyone who has an adverse reaction to a fluoroquinolone has a reaction like mine, or even develops Fluoroquinolone Toxicity Syndrome – thank God.  Many people have milder reactions.  Milder symptoms include any one of the symptoms listed above as well as  diarrhea, vomiting, mild tendonitis, decreased energy, painless muscle twitches, memory loss, urgency of urination, or any number of reactions that the body may have to a massive depletion of antioxidants and increases in lipid peroxide levels and reactive oxygen species production.

Even though severe adverse reactions to fluoroquinolones antibiotics can be painful and disabling for years, many (possibly most, but certainly not all) people recover from Fluoroquinolone Toxicity Syndrome with time.  I anticipate that I will be fully recovered 2 years after my reaction started. Sadly, there are some people who don’t recover.  They suffer from chronic pain, disability, impaired cognitive abilities, etc. permanently.

It is absurd, to say the least, that an acute problem, an infection, that can easily be taken care of with administration of an antibiotic that is not a fluoroquinolone, is converted into a chronic problem, a  syndrome that can disable a person for years, by a prescription ANTIBIOTIC, used as prescribed. In my case, a urinary tract infection that could have likely been taken care of with macrobid or even cranberry juice and d-mannos, was treated with Cipro which left me unable to do many physical and mental tasks that I had previously been able to do with ease. It’s a crazy, absurd situation.  It’s absurd and it’s wrong.

Some Antibiotics are More Dangerous than Others

The bottom line is that these popularly prescribed antibiotics are dangerous drugs that have caused thousands of people to suffer with a myriad of maladies. Undeniably, they have their place, in treating life-threatening infections.  Unfortunately, they are not being reserved for use in life-threatening situations and people are being hurt after taking them for simple sinus, urinary tract, bronchial and prostate infections. A strict and rigorous protocol needs to be established to limit the damage that they cause; because it’s not right to maim and disable people to treat their sinus infections.

Information about Fluoroquinolone Toxicity

Information about the author, and adverse reactions to fluoroquinolone antibiotics (Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin and Floxin/ofloxacin) can be found on Lisa Bloomquist’s site, www.floxiehope.com.

This article was published previously in August 2013 and is being re-posted in light of the recent press coverage warning of fluoroquinolone dangers.

Fluoroquinolone Antibiotic Dangers: Why Didn’t They Tell Me?

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Hundreds of articles about the harmful effects of fluoroquinolone antibiotics (Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin and Floxin/ofloxacin) have been published in medical and scientific journals, yet most of the articles have been ignored by the medical community and downplayed by the FDA. I can only surmise that the ignorance around the dangers of fluoroquinolones is because they are used as antibiotics and antibiotics are “supposed” to be safe and only damage bacteria, while leaving human cells unscathed. Or maybe it is because of the constant repetition of the baseless statement that fluoroquinolones have an “excellent record of safety and tolerance;” a statement that is only true if delayed reactions, tolerance thresholds and epigenetic effects are not taken into consideration.

Regardless of the motivations of those who are ignoring how destructive fluoroquinolones are, valuable information about the safety (or rather, the dangers) of fluoroquinolones as a class of drugs, have been ignored. Warnings about the toxicity of fluoroquinolones have been noted in journal article after journal article, yet they are still some of the most popular antibiotics prescribed.

Caution, prudence and thoughtfulness should be exercised when prescribing drugs that are as dangerous and destructive as fluoroquinolones. Fluoroquinolones are chemo drugs that are being mis-prescribed as antibiotics. Before filling a prescription for a fluoroquinolone to treat a sinus infection, or to use prophylactically for traveler’s diarrhea, or putting in your child’s ear to treat an ear infection, I encourage you to note the cellular destruction done by fluoroquinolones. Neither the FDA nor the average doctor is properly warning patients about the dangers of fluoroquinolones. Unfortunately, it is up to patients to inform themselves and gain proper warnings about the consequences of these dangerous drugs.

Fluoroquinolones Damage DNA

Back in 1992, when fluoroquinolones were first gaining popularity, Scientists raised concerns about their safety in an article published by the Proceedings of the National Academy of Sciences of the United States:

“the interaction (of fluoroquinolones) with DNA is still of great concern because of the possible long-term genotoxicity of quinolone compounds, which are increasingly adopted as first-choice antibiotics for the treatment of many infections, and because it addresses the real mechanism of action of this class of molecules.”

Fluoroquinolones are topoisomerase interrupters, meaning that their mechanism of action is described as, “The bactericidal action of ciprofloxacin results from inhibition of the enzymes topoisomerase II (DNA gyrase) and topoisomerase IV (both Type II topoisomerases), which are required for bacterial DNA replication, transcription, repair, and recombination.” (Cipro warning label).

Very little, if any, concern over the possible genotoxic effects of fluoroquinolones were expressed to the public as they gained popularity and uses were expanded in the early 1990s. The warnings and concerns expressed by the scientists quoted were ignored.

It is noted in Molecular Pharmacology, “Delayed Cytotocicity and Cleavage of Mitochondrial DNA in Ciprofloxacin Treated Mammalian Cells” that fluoroquinolones “cause a selective loss of mitochondrial DNA (mtDNA)” and “The loss in mtDNA was associated with a delayed loss in mitochondrial function.” Additionally, it is stated that “ciprofloxacin induces reversible double-stranded breaks in nuclear DNA.” Studies have shown that both mitochondrial and nuclear DNA is adversely affected by fluoroquinolones, yet those studies have not gained traction in the medical community and have effectively been ignored.

The intergenerational effects of depleting DNA with fluoroquinolones is unknown at this time (I surmise that this is because these studies have been ignored, intergenerational studies are difficult to do, and funding for them is hard to come by). However, it is known that, “a number of human mitochondrial genetic diseases that are clinically discreet are being diagnosed at unexpected rates” (source). Additionally, in an article published in Nature in 2013 entitled, “Topoisomerases facilitate transcription of long genes linked to autism” it was noted that, “Our data suggest that chemicals or genetic mutations that impair topoisomerases, and possibly other components of the transcription elongation machinery that interface with topoisomerases, have the potential to profoundly affect the expression of long ASD (autism spectrum disorder) candidate genes.” Fluoroquinolones are topoisomerase interrupting chemicals.

Thus far, neither the increase in mitochondrial genetic diseases nor the link between topoisomerase interrupting drugs and autism have been acknowledged by the medical community, the FDA or the general public.

Fluoroquinolones Damage Mitochondria

The deleterious effects of fluoroquinolones on mitochondria have been noted repeatedly in journal articles, and even by the FDA.

In Science Translational Medicine, “Bactericidal Antibiotics Induce Mitochondrial Dysfunction and Oxidative Damage in Mammalian Cells,” it is noted that bactericidal antibiotics, including ciprofloxacin, a fluoroquinolone, “damage mammalian tissues by triggering mitochondrial release of reactive oxygen species (ROS).” Even the FDA acknowledges that fluoroquinolones cause mitochondrial damage. In their April 27, 2013 Pharmacovigilance Review, “Disabling Peripheral Neuropathy Associated with Systemic Fluoroquinolone Exposure,” the FDA notes that the mechanism for action through which fluoroquinolones induce peripheral neuropathy is mitochondrial toxicity. The report says:

“Ciprofloxacin has been found to affect mammalian topoisomerase II, especially in mitochondria. In vitro studies in drug-treated mammalian cells found that nalidixic acid and ciprofloxacin cause a loss of mitochondrial DNA (mtDNA), resulting in a decrease of mitochondrial respiration and an arrest in cell growth. Further analysis found protein-linked double-stranded DNA breaks in the mtDNA from ciprofloxacin-treated cells, suggesting that ciprofloxacin was targeting topoisomerase II activity in the mitochondria.”

Fluoroquinolones are very, very bad for mitochondria. As the engines of our cells, healthy mitochondria are very necessary for healthy cells. Mitochondrial dysfunction is connected with many chronic diseases, including autismCFS/MEfibromyalgiaAlzheimer’s DiseaseParkinson’s Disease,multiple sclerosis, etc.

Fluoroquinolones Alter Neurons

Fluoroquinolones downgrade GABA-A receptors and can lead to a variety of CNS related symptoms of fluoroquinolone toxicity such as “dizziness, confusion, tremors, hallucinations, depression, and, rarely, psychotic reactions have progressed to suicidal ideations/thoughts and self-injurious behavior such as attempted or completed suicide,” as well as “nervousness, agitation, insomnia, anxiety, nightmares or paranoia” (Cipro warning label).

It was concluded in an article in The Journal of Neurophysiology in 1991 that, “in the presence of an anti-inflammatory agent, the quinolone antibiotics decrease the affinity of GABAA receptors, the result being induction of epileptogenic neurotoxicities.”

GABA receptors
Copyright 2009 Pharmacy Weekly, Inc. Printed with permission.

An article in Pharmacology Weekly that was published in 2009 notes that fluoroquinolones “modulate the activity of the gamma-aminobutyric acid (GABA)-A receptor” leading to the CNS side-effects of fluoroquinolones that include “tremors, restlessness, anxiety, confusion, paranoia, insomnia, etc.” and that “the presence of an NSAID or NSAID metabolite can significantly augment this effect and result in an even greater inhibition of GABA-A receptor activity” and lead to seizures, in addition to the other CNS effects listed. But, in 2015, people still are not systematically warned about the possibility of fluoroquinolone induced “nervousness, agitation, insomnia, anxiety, nightmares or paranoia” and NSAIDs are still prescribed concurrently with fluoroquinolones, despite documentation that the combination of fluoroquinolones and NSAIDs downgrade important neurotransmitters.

Though the symptoms that arise when GABA-A receptors are downgraded are noted on the warning labels for fluoroquinolones, nowhere on the warning label does it say that these effects can be long-lasting, or even permanent.

Generally, the effects of fluoroquinolones on neurotransmitters are ignored, and ensuing anxiety, insomnia and psychiatric illnesses are assumed to have nothing to do with the antibiotics that were prescribed for a sinus or urinary tract infection. The research and the warnings, have been ignored.

Fluoroquinolones Damage Cells

In The Journal of Medical Microbiology it was noted that:

Dougherty & Saukkonen (1985) showed that inhibition of DNA synthesis by nalidixic acid, a DNA gyrase inhibitor, results in morphological changes consistent with a loss of membrane integrity and leakage of intracellular components. Similar results were presented by Wickens et al. (2000), who noticed a decrease of both membrane integrity and membrane potential after exposure of E. coli to CIP. One of the proposed explanations of this finding is that, as a result of processes induced by inhibition of DNA replication, cells lose their capacity to synthesize necessary components and to maintain the proper membrane structure (Dougherty & Saukkonen, 1985).”

Naladixic acid is the root component of all fluoroquinolones.

In case it needs to be said, cellular membrane integrity and keeping intracellular components inside cells, are important. It is important for cells as a whole, and for organelles within cells such as mitochondria. As the importance of the microbiome is being uncovered, the importance of the bacteria in our guts maintaining cellular integrity is slowly being realized as well.

Fluoroquinolones are Dangerous Drugs

The FDA warning label for Cipro/ciprofloxacin is 43 pages long. The serious and severe adverse effects listed on the warning label are due to the cellular destruction done by Cipro. Other fluoroquinolones (Levaquin and Avelox are popular) have similar safety/danger profiles.

Though no antibiotics are without consequence, the cellular destruction done by fluoroquinolones makes them far more dangerous than other antibiotics. Fluoroquinolones should be categorized as chemo drugs along with all other topoisomerase interrupters. Please be wary and cautious with fluoroquinolones, and don’t use them unless it is absolutely necessary.

Information about Fluoroquinolone Toxicity

Information about the author, and adverse reactions to fluoroquinolone antibiotics (Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin and Floxin/ofloxacin) can be found on Lisa Bloomquist’s site, www.floxiehope.com.

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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Side Effects and Unintended Consequences of Popular Pharmaceuticals

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After experiencing an adverse reaction to a popular antibiotic, ciprofloxacin, that involved destruction of my tendons, muscles, and cartilage, as well as my centralperipheral and autonomic nervous systems, I was left with questions that no one seemed to be able to answer – What did ciprofloxacin do to my body?  What happened that made it feel as if a bomb had gone off in me?  Why was I fine after taking ciprofloxacin once, but was far from fine after taking it a second time?  Why can some people tolerate ciprofloxacin and other fluoroquinolone antibiotics with no ill effects, but others can’t and are destroyed by a single prescription?  And the most important question of all – How could I put my body and mind back together again?

I scoured research journals for answers to these questions. The answers that I found were daunting.  I found that ciprofloxacin and other fluoroquinolone antibiotics are topoisomerase interrupters – meaning that they disrupt the enzymatic process of bacterial DNA replication (and mitochondrial DNA replication).  I found that fluoroquinolones deplete intracellular magnesium.  Depletion of intracellular magnesium has multiple health consequences including disruption of more than 300 enzymatic processes.  I realized that both enzyme depletion and magnesium depletion lead to mitochondrial dysfunction.  I found that mitochondrial dysfunction leads to high levels of oxidative stress and that oxidative stress wreaks havoc on multiple areas of health.  I discovered that the carboxylic acid molecule in fluoroquinolones can be metabolized into poisonous metabolites in the liver. I learned how feedback loops between multiple biological systems work together and those compensatory feedback loops make repairing damage difficult.

The more I learned about the complex interactions occurring in my body, the more I realized that the number of unknown factors is far greater than the number of known factors. I realized that, as much as I wanted easy answers and quick solutions, there were none available. Because of the complexity of the human body, as well as individual differences in both genetics and environment, I doubt that easy answers will ever be available. Any one of the many complex systems within the human body can be studied for a lifetime without knowing everything about it. The multiple systems within our bodies are interconnected, difficult to comprehend, poorly understood and truly amazing. Human life is astoundingly, beautifully, mind-bogglingly complex.

Mind Blowing Complexity 

This chart of metabolic pathways shows just one level of biochemical complexity in the human body. Click and take a look. Amazing, isn’t it?  I find the pathways to be both incredibly daunting and beautiful at the same time. As complex as that chart is, it doesn’t include everything. There are additional layers on top of it – genetics, epigenetics, equally complex charts about the microbiome, endocrine system, bioenergetics, etc.

Even though the metabolic pathways in the chart above are known (if they weren’t, they wouldn’t be in the chart), I suspect that the interactions between the metabolic pathways, and the connections between them and other complex systems, are not adequately considered in healthcare. How could they be? These pathways are so mind-blowingly complex, and so interconnected with layer upon layer of feedback and feedforward loops amplifying any disruption and miscalculation, that if we were to properly consider the ramifications of pharmaceutical alterations, no one would dare take most medications. We would recognize the limits of our abilities to predict and treat the inevitable unintended consequences of disturbing the balance within and among these systems. Since pharmaceuticals are a trillion dollar industry, it is safe to say that all of the potential effects of pharmaceuticals on these pathways are not fully considered.

Pharmaceuticals Disrupt Biochemical Pathways

Every pharmaceutical has an effect on those pathways. When the drug interacts with the metabolic pathways as expected, all parties involved are pleased. When the drug interacts in unexpected or unwanted ways, we say that there are “side-effects.” I wonder though, are there really side-effects, or is that just a more palatable expression about the limits of our understanding (and attention)? One could argue that if we paid more attention to the broader biological systems involved in human health, those “side-effects” would be entirely predictable. But we don’t. Instead we focus our medication efforts on narrowly defined targets, destroying a particular pathogen or amplifying or diminishing a specific cell cycle function, all the while ignoring that those processes are conserved systemically. Perturbations in one organism or one function, necessarily affects the entire system. Nothing happens in isolation.

If we were to consider the potential for drugs to initiate systemic reactions, and if the effects of drugs on metabolic pathways were properly regarded, fluoroquinolones and many other drugs and vaccines would not be on the market. But we don’t. Instead, we choose to believe that side-effects are rare and won’t happen to us. Those beliefs are bolstered by decades of marketing to physicians and patients, promoting the safety and efficacy of each drug, often long after science and the legal system have disputed those claims.

Fluoroquinolones, the drugs I know most about, deplete intracellular magnesium (note how many times you see Mg in the chart) and disrupt vital enzymatic processes (which are kind of important). Can you even imagine there not being unintended consequences to depleting vital minerals from a system that is as complex and interconnected as cellular biochemistry and metabolic pathways that determine human health?  I cannot imagine it, because after learning about how fluoroquinolones react in the body, I know too much to believe the marketing propaganda about any drug. Before my adverse reaction, however, I never gave the safety of antibiotics a second thought. It appears neither did my doctor, nor the millions of other physicians who have made the fluoroquinolone class of antibiotics the most prescribed and profitable antibiotics ever.

I know that there are some very smart scientists out there; people who are far more intelligent than I, who have a much better grasp of biochemistry – so why aren’t the dangers of fluoroquinolones more well-known? Why aren’t the side-effects entirely predictable? Why did I have to figure out all of this on my own, without help from the physician who prescribed the medication or the physicians I saw post reaction? Sadly, I have come to believe that most physicians and patients alike don’t want to recognize the complexity of human health; preferring instead to believe in our own intellectual supremacy. And as much as I appreciate the scientists who are doing the work on which I have based my assertions, I don’t think that there is anyone who understands the complex biochemical feedback loops sufficiently to guarantee that there won’t be unintended consequences when disrupting part of the system with a pharmaceutical.

Unintended Consequences

How can one avoid the unintended consequences that come with disruption of the biochemical interactions described in this chart?  Individualized medicine that takes into consideration genetic predispositions is one place to start, but it requires that we recognize the complexity of interacting systems and abandon our silver bullet approach to medicine. From where I sit, this is a long way off. Individualized medicine based on genetic predispositions barely exists. If we consider the complexity of a lifetime of environmental exposures, predicting how a particular drug will react in given individual is complex, if not impossible. For me, the most feasible way to avoid unintended disruptions and feedback loops is to avoiding pharmaceuticals (or at least use them very sparingly). Each medication has side-effects and unintended consequences. All drugs disrupt the very biochemical feedback loops necessary for keeping us healthy.

Avoid the Cause in Order to Avoid the Effect

Perhaps, I am the medical equivalent of a Luddite. Perhaps, I over-emphasize the harm done by pharmaceuticals and underestimate the good done by them because I was hurt by a drug. I see the unintended consequences of disrupting the delicate balance of biochemical pathways everywhere. All of the diseases of modernity can be traced to a disruption on the chart above (or maybe a disruption on the endocrine system chart, or the microbiome chart, or the epigenetics chart). People are sick; not cells in a petri dish – people. They are sick and they are suffering because of disruptions in their biochemistry.

These systems are complex. The feedback loops between systems amplify the complexity and make mistakes and miscalculations difficult (impossible) to correct.

Disruptions in our biochemistry result in disease.

We live in a world of unintended consequences. Does anyone else see it?

Information about Fluoroquinolone Toxicity

Information about the author, and adverse reactions to fluoroquinolone antibiotics (Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin and Floxin/ofloxacin) can be found on Lisa Bloomquist’s site, www.floxiehope.com.

Open Letter to Pharmacists Prescribing Fluoroquinolones – You Know!

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Dear Pharmacists,

You know about the dangers of fluoroquinolone antibiotics. You know that Cipro, Levaquin, Avelox and the other fluoroquinolones can cause central nervous system damage that can show up as anxiety, depression, memory loss, depersonalization, loss of intellect and social connectedness, suicidal ideation, etc. You know that fluoroquinolones can cause permanent destruction of all the connective tissue in a person’s body, their tendons, ligaments, fascia and cartilage. You know that adverse reactions to fluoroquinolones can be delayed and that stopping the medication will do nothing to stop its path of destruction.  You know that fluoroquinolones are contraindicated with NSAIDs and steroids. You know that they should NEVER be prescribed or administered to anyone under the age of 18.

You are pharmacists. Your expertise is in pharmaceuticals.  You have studied the chemical structure of fluoroquinolones and you know their effects, both good and bad.  You know that they are dangerous drugs that should only be used in life-or-death situations.  You know that they are over-prescribed. You know that they can have DEVASTATING adverse effects.  YOU KNOW.

Yet you continue to hand them out.  You continue to fill prescriptions with no more warning to the patient than a slip of paper in the bag that contains the poison that may shake their world.  You tell them that their infection will go away when they take the Cipro, Levaquin or Avelox.  The infection will go away but you FAIL to warn them that it may be replaced with chronic conditions that mirror autoimmune diseases, that their mental health may never be the same again, that they may never be the athletic, healthy person that they used to be.

You know that fluoroquinolones should NEVER be given to children. Yet you fill prescriptions for eye and ear drops containing fluoroquinolones for children, even BABIES.  You hand poison over to a mother with a crying 11 month-old child with an ear infection, knowing that the Cipro ear drops will get rid of that child’s infection, but that it may fry their little brain. You know. And you don’t protect the children.

You say that it’s the doctor’s job to know what he or she is prescribing, but you know that they have no clue about the dangers of fluoroquinolones. They disregard the warnings of side-effects on the drug labels, thinking that all drugs have side-effects and that they all should be disregarded because the side-effects listed are arbitrary.  There is nothing arbitrary about the litany of side-effects included with prescriptions of Cipro, Levaquin or Avelox.  You know this to be true, but the doctors don’t.  Their crime is one of willful ignorance and arrogance. They refuse to listen to anyone outside of their ranks, including you (and that’s another problem). They are ignorant, possibly through their own fault.  But you are not ignorant. You know about the dangers of fluoroquinolones. You know.

Doctors may not listen to you, but you can still do something about this moral atrocity.  Please, please, please STOP giving out these drugs. You are the gate-keepers. You can keep patients from poisoning themselves, or worse, poisoning their children. You can refuse to fill those prescriptions. You can tell doctors that they MUST follow their Hippocratic Oath and prescribe a safer antibiotic in non-life-threatening situations. You can ensure that all patients who walk away from your counter with a prescription for a fluoroquinolone have real INFORMED CONSENT. The Hippocratic Oath and Informed Consent are indescribably important. They are the moral bedrocks of the medical system, yet they are being disregarded. You can reinstate them in their appropriate place, at the top of the consciousness of every patient who deals with the medical system. You can and you should, yet you don’t.

You, as an individual, have the power to stop filling these prescriptions. You have the power to talk to the doctors that you work with, to inform them that fluoroquinolones are dangerous drugs. You have the power to talk to your patients and ensure that they have the information that they need to make a decision with true informed consent.  You have that power. Please use it to make the world a better place.

You, as a group, have the power to change the way that all drugs are viewed. You can make sure that a protocol of careful examination and active warnings to patients for all drugs that are truly dangerous is followed when prescribing and filling prescriptions of drugs with serious side-effects. You can pressure the FDA into making sure that the side-effects listed on a drug insert are real and not arbitrary so that they are actually paid attention to.

Please be moral. Do the right thing. Please be ethical. Know that your actions have consequences. They matter. Your decision about whether or not to fill a prescription of Cipro, Levaquin or Avelox can make a difference in a person’s life.

I know that the tone of this letter is scolding. Please know that my intention is not to make you feel like a horrible person, my intention is to ask you to be a better, more empowered, more ethical person.  If that is not possible, I ask you, I beg of you, please just STOP filling prescriptions of fluoroquinolones for children. They need your protection. They will thank you by living a full life without the chronic illness that plagues people who have been adversely effected by fluoroquinolones. Please, do what you can. Please do what’s right.

Thank you,

Lisa Bloomquist

Survivor

P.S. – If you’re pleading ignorance, let me ask you this question – Would you give your child a fluoroquinolone?  If your answer is no, YOU KNOW.

Information about Fluoroquinolone Toxicity

Information about the author, and adverse reactions to fluoroquinolone antibiotics (Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin and Floxin/ofloxacin) can be found on Lisa Bloomquist’s site, www.floxiehope.com.

When Did it Become Okay to Disregard Patient Pain?

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Fibromyalgia, Chronic Fatigue Syndrome / M.E., Gluten Intolerance / Celiac Disease (or other dietary intolerances), Lyme Disease, depression, anxiety and every disease that is brought on by an adverse reaction to a drug or vaccine, is very difficult to diagnose and treat. Individuals with these diseases are often disregarded and treated as if they are making up their symptoms, or choosing to be sick, or as if they are crazy, which leads me to the question – When did it become okay to disregard patient pain and suffering?

I was at a dinner party recently where a gentleman was expressing an incredulous attitude about gluten intolerance. He stated that bread has been around for thousands of years and that people have been dealing with it just fine for all that time. He didn’t see how people could suddenly start having trouble digesting gluten. This simplistic attitude fails to take into account the facts that both our bread, through GMO wheat, pesticides and processing, is different now, and that our digestive systems, because of rampant use of antibiotics, are also different now. Regardless of the causes of gluten intolerance, it is not something that you can believe in or not. People have experiences of feeling ill when they eat foods that contain gluten. To disregard their experience and to tell them that what they feel is not valid, is inexcusably arrogant and rude. Sadly, that is exactly what happens too often in healthcare today. Symptoms that are not easily understandable, recognizable by modern diagnostic tools or treatable by the medications currently available, are disregarded, and worse yet, attributed to the patient’s own mental health weakness.

The Myth of Modern Diagnostics

Perhaps disregard and disbelief emanates from the notion that if a disease isn’t detectable and it isn’t treatable, then it doesn’t exist. When pain, a disease, physical or mental dysfunction of one sort or another, is felt intensely by the patient but its source is undetectable using the methods of modern medicine, it easier to deny that the problem exists than search for solutions. Rather than question the detection methods, the diagnostics, or say “I don’t know,” many doctors, family and friends deny that there is a problem at all. The mysterious, difficult to treat illnesses is attributed to a mental health flaw or personal weakness.  It’s “all in their head,” is a common refrain; as if what is in your head is a choice or isn’t important.

It Gets Worse

For those of us with illness caused by a drug or vaccine, having our pain and suffering acknowledged is difficult at best.  Our symptoms are typically invisible and mysterious, and when we tell people about the cause of our illness we are often treated with hostility. It is as if in telling our stories about how we were hurt by a pharmaceutical, we are trying to dismantle the entire modern medical system and get rid of the good with the bad. I have experienced this repeatedly since my adverse reaction and subsequent injury from Cipro. My experience is not uncommon. Read any of the patient stories of post-Gardasil, post-Lupron or post-fluoroquinolone injury – we all suffer, and we are often treated poorly.

When one speaks out against a travesty in the medical system, he or she is often accused of being a conspiracy theorist, anti-vaccine or anti-science, even though medication interactions, errors and adverse events are the 4th leading cause of death in the U.S. There are few shades of grey. One is either pro-medicine, science, vaccine or drug, or on the lunatic fringe. This characterization is unfair, as many victims of adverse reactions to prescription drugs or vaccines thoroughly believe in the efficacy of the Scientific Method, we just dislike being an experiment gone awry.

For those who have not been harmed by a medication or vaccine, it is difficult to imagine. How could a drug that is prescribed all the time, a drug that also does some good (or it wouldn’t be prescribed), have caused such harm? How could a drug or vaccine lead to such chronic pain or illness? It is difficult to conceive. It is difficult to reconcile. Egos get involved and shackles get raised. How dare a patient, a victim, a normal person, accuse a doctor, an expert, of doing harm? What doctors don’t recognize is that we are not meaning to accuse, we are seeking help, compassion and understanding.

When Did It Become Okay to Disregard Patient Pain and Suffering?

I suspect it happened during the debate over whether or not vaccines contribute to Autism. Somewhere during that debate, which is yet on-going, it became okay to tell people that it was impossible for drugs or vaccines to cause the horrifying plethora of side-effects that they do indeed cause. It became okay to believe, despite the long list of adverse effects that accompany each pharmaceutical, that medicines and vaccines where somehow entirely safe; that because they didn’t cause ill-effects in all patients, they couldn’t cause them in some.

It’s not okay.

Drug and Vaccine Side-Effects Happen

They are serious and they should not be ignored.  Please have some compassion for the victims of adverse reactions to drugs and vaccines. Please listen to their stories and realize that they know their bodies and conditions better than anyone else. Please treat them with kindness, respect and love. They deserve no less. Most importantly, do the research necessary to find out how and why these adverse event occurred and then develop the appropriate solutions to heal these patients. Better yet, invest in safer, more personalized vaccines and medications that are only given to those who will benefit from them.

Information about Fluoroquinolone Toxicity

Information about the author, and adverse reactions to fluoroquinolone antibiotics (Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin and Floxin/ofloxacin) can be found on Lisa Bloomquist’s site, www.floxiehope.com.