Monthly Archives: April 2018

Fluoroquinolone Toxicity and Intracranial Pressure

Several people suffering from fluoroquinolone toxicity have noted that horrible headaches and pressure in their head has been a symptom of fluoroquinolone toxicity. This comment simply sums up what others have said:

“How do you get rid of the head pressure? I can’t concentrate to read. It’s been 16 months, any tips please.”

Additionally, in the post, “Floxies vs. Normals Part 2” Betsy describes her post-flox headaches (and other painful conditions):

“Migraines before were painful. Migraines after are devastating and debilitating. The one I got while on Cipro was the most intense thing I’ve ever experienced. I’ve never had meningitis but the pressure and pain in my head was so excruciatingly painful that I can only imagine it must be similar. I’ve had infrequent migraines my entire life but the floxed ones truly devastate my body leaving me so weak as to be unable to function at all. There is no comparison.”

Unfortunately, these are not two isolated incidents. While not every “floxed” individual suffers from intense headaches (I didn’t), many do, and head pressure/headaches can be both devastating and under-acknowledged symptoms of fluoroquinolone toxicity.

Fluoroquinolones have been linked, through several studies, to pseudotumor cerebri syndrome (PTCS), which manifests as horrible headaches and head pressure. Chandler Marrs, founder of HormonesMatter.com describes PTCS as follows:

“Pseudotumor cerebri, also called intracranial hypertension, is a serious neurological condition marked by excessive cerebral spinal fluid (CSF) induced pressure in the skull. The increased CSF puts pressure around the brain mimicking symptoms of a stroke or a tumor, including severe headache, vision changes, even vision loss, synchronous pulsatile tinnitus (pulse based ringing in the ears described as a whooshing sound), and nausea. Many women (and men) who experience these symptoms are misdiagnosed with migraines or led to believe that it’s ‘all in their head’ – pun intended. If sufficient intracranial pressure builds up other symptoms  develop including sharp nerve pain in the arms, legs, and back, severe neck stiffness, nausea/vomiting, numbness or tingling in hands, feet, and face, depression, exercise intolerance, and memory difficulties. These symptoms occur absent a tumor, hence the name pseudo or false tumor, and absent other disease processes.” (source)

Sound familiar?

A recent study published in the American Academy of Neurology, “Oral fluoroquinolones and risk of secondary pseudotumor cerebri syndrome: Nested case-control study” found that approximately 2,000 of the 6,000 cases of PTCS are related to fluoroquinolone use. That’s ONE THIRD of the cases of PTCS – a disabling and life-altering painful condition. The researchers found that the relative risk of PTCS is 5.6 times higher in recent recipients of fluoroquinolone antibiotics than in non users.

In Intra-cranial Pressure and “Headaches” on FluoroquinoloneThyroid.com, the author describes her experience with post-fluoroquinolone intracranial pressure:

“I don’t know how to describe it other than “pressure”.  It feels like my head could explode, and I especially feel this in my ears.  It’s as if my ear drums are going to blow out with this too.”

She goes on to note that this fluoroquinolone toxicity symptom appears to be related to thyroid hormone and iodine homeostasis, and describes how differing levels of TH and iodine affected her symptoms. (The post, Fluoroquinolone Antibiotics and Thyroid Problems: Is there a Connection?, gives an overview of the connections between fluoroquinolones and thyroid problems.)

Also linked to in Intra-cranial Pressure and “Headaches” is a horrifying case-study of a 6-month old boy who was given nalidixic acid (the original precursor to the quinolone pharmacore) who suffered from “bulging fontanelle, papilloedema, widening of skull sutures, and vomiting” after being given naladixic acid for treatment of a urinary tract infection. The case-study was published in 1967. Instead of using naladixic acid, we now use fluoroquinolones, which are likely more dangerous than naladixic acid because fluorine was added to them specifically so that the drugs would more deeply penetrate tissues and cells.

Unfortunately, most doctors don’t link head pressure, intense headaches, PTCS, or migraines to fluoroquinolone use more than fifty years after the publishing of the case study noted above. The lack of recognition and connection is disheartening, to say the least. Perhaps with more studies, and more patient-advocates connecting the dots, more physicians will recognize the connections. If headaches, head pressure, migraines, or other related issues are fluoroquinolone toxicity symptoms for you, I suggest that you look at “Oral fluoroquinolones and risk of secondary pseudotumor cerebri syndrome: Nested case-control study” and that you give it to any physicians you’re working with. It is odd, and likely “unheard of” for most physicians and patients alike that fluoroquinolones can increase the risk of PTCS or other head-pressure related illnesses, but the connections are there and documented, and they should be recognized.

Connection – Post-fluoroquinolone headaches may be a result of cerebrospinal fluid leaks. Please see the post, Do Fluoroquinolones Cause Cerebrospinal Fluid Leaks?, for more information on the possible connections between fluoroquinolone toxicity and CFS leaks. Thank you.

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Quinolones in our Environment

Why do some people have relapses of their fluoroquinolone toxicity symptoms? Why is fluoroquinolone toxicity an ongoing illness–a syndrome–and not a one-time event that ends once the drug is metabolized? Why do people seem sensitized after suffering from fluoroquinolone toxicity–with exposures to things that would be benign to healthy people throwing them into a relapse? Why does fluoroquinolone toxicity seem more like an autoimmune or neuroimmune disease than a drug allergy? What does fluoroquinolone toxicity have in common with autoimmune or neuro-immune diseases?

These are all perplexing questions about FQT/FQAD that currently we have no answers for. On the
website http://fluoroquinolonethyroid.com/ many ideas about possible mechanisms regarding some
of these questions are explored (here, here, and here). I found the most recent of these posts,
entitled Nature’s Quinolones: The 4Qs, to offer additional thought-provoking and insightful new
ideas to consider when thinking about questions like these.

This post is a summary of Nature’s Quinolones: The 4Qs, to share the information in it with the
Floxiehope.com audience. There is information in the original article that I won’t be covering in this
post, and I hope this summary inspires you to read more about the details in the original article. I
also hope that any researchers reading this will check out the original article, as it provides a more
comprehensive explanation, along with numerous references, that may be of use in your thought
processes about this topic.

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There is a bacteria that is ubiquitous in our environment called Pseudomonas aeruginosa, or P. aeruginosaP. aeruginosa is everywhere, including, “soil and water, lakes, streams, rivers, other fresh water, potable water, and sources such as sinks, showers, and hot tubs.” People with healthy immune systems deal with P. aeruginosa without incident. However, P. aeruginosa is a pathogen associated with hospital-acquired infections in immune-compromised individuals, and perhaps it may also be possible that some people have immune systems that over-react to to the bacteria, or its byproducts.

Like many other bacteria and some fungi, P. aeruginosa “communicate” with each other via something called Quorum sensing (QS). The P. aeruginosa QS molecules are able to turn bacterial genes on and off, such as instructing the bacteria to form biofilms under certain circumstances. Just as people with normal immune systems interact with P. aeruginosa without incident, people with normal immune systems also interact with the P. aeruginosa QS molecules without incident.

However, one of the possible ideas explored in Nature’s Quinolones: The 4Qs is that people who have been “floxed” may not react to the P. aeruginosa QS molecules without incident. Rather, perhaps they may be sensitized to the P. aeruginosa QS molecules, and their immune-system attacks these molecules, causing a potential autoimmune/neuroimmune reaction.

Why might “floxies” have an immune-system over-reaction to P. aeruginosa QS molecules?

Because one group of QS molecules that P. aeruginosa QS makes are actually quinolones–“nature’s quinolones” (heterocyclic 4-quinolone/quinolines – abbreviated the “4Qs”). These 4Qs produced by P. aeruginosa share the basic 4-quinolone backbone of the commercially synthesized quinolone antibiotics. (More information about this can be found in Nature’s Quinolones: The 4Qs, as well as the articles linked-to in the post, including 4-Quinolones: Smart Phones of the Microbial World.)

I don’t know about you, but this BLEW MY MIND.

The production of natural quinolones may answer the question – why do people have ongoing reactions to fluoroquinolone antibiotics that last long after the drugs “should” be out of their system? Could it be because they are constantly being re-exposed to quinolones in our environment–through a common bacteria producing them to communicate with other bacteria? Could it be that Fluoroquinolone Toxicity is an ongoing syndrome because it is an immune reaction (and/or sensitization) to chemicals that are ubiquitous in our environment?

Again, these are just possible ideas the author of  Nature’s Quinolones: The 4Qs is exploring, but it MAKES SO MUCH SENSE.

QS Qinolones act as “signaling molecules for other bacteria. FQs also act as “signaling molecules” within us. In particular, they seem to target cytokines, which are heavily involved in the signaling and amplification system in our immune systems.” Pharmaceutical fluoroquinolones are given in a large enough doses that perhaps they may signal the immune system to over-react–especially to the presence of other quinolones. Nature’s Quinolones: The 4Qs describes some possible mechanisms through which fluoroquinolones may affect the immune system, providing numerous references in additional links in the article supporting this. Fluoroquinolones (and/or the 4Qs if production in larger amounts due to severe infection such as sepsis, for example) may also trigger epigenetic “switches” to be “flipped” in the immune system, causing a change that leads to a constant over-reaction to quinolone molecules.

The author of Nature’s Quinolones: The 4Qs ponders:

“I wonder if some of my existing natural antibodies were “switched on” in a major way, leading to global or specific hypersensitivities. And based on what I now know about FQs acting as ‘signaling molecules,’ I’m guessing that one or more of my cytokines or receptors were hit especially hard by what my body perceived as a whopping dose of quinolones.”

An over-active immune system that is hyper-sensitive to minute amounts of molecules that are harmless, and even unperceived, to people with normally functioning immune systems, is not unheard-of. Many people with ME/CFS believe they have autoimmune/neuroimmune reactions to tiny molecules of mold, and even minuscule amounts of mold appear to make them severely ill. Common allergies are also a result of an over-sensitized immune system:

“If this seems like an extreme leap to make, consider, for example, two very common allergies: hay fever and peanut allergies. There are microscopic particles of pollen and dust floating around in the air that most of us never see, feel, are aware of, or react to – unless you’re a person with hay fever allergies. There are microscopic proteins and aflatoxins in peanuts that most of us never see, feel, are aware of or react to – unless you’re a person with a peanut allergy. The first allergy typically leaves people with itchy and runny eyes and nose. The second allergy can result in anaphylaxis and even death. The point being, it doesn’t take much of these substances to make a person miserable or even kill them – if they’re hypersensitive.”

Might some people suffering from fluoroquinolone toxicity be sensitive to minute amounts of quinolones in the environment? Might some people who live in more humid and moist environments, for example, have increased exposure to quinolones by P. aeruginosa QS molecules? Additionally, might the fluoroquinolones have made epigenetic changes to the immune systems of those suffering from fluoroquinolone toxicity that make them have autoimmune/neuroimmune-like reactions to quinolones, including the 4Qs? Again, it makes all the sense in the world to me, but it needs to be examined by someone with the capacity to test these ideas.

If fluoroquinolones change the genetic on/off switches in our immune systems, how do we flip those epigenetic “switches” again? That’s a very good question that I don’t know the answer to. Our environment is constantly affecting our genes though, and epigenetics is a burgeoning field of research. I’m hopeful that scientists will find targeted ways to flip gene switches. I’m also hopeful that, in the meantime, changes in your environment (eating healthy foods, reducing stress, supplements, etc.) may help you (the “floxie” reading this) to “switch” your immune system back to where you were pre-flox so that your body is not over-reacting to nature’s quinolones (if that’s occurring). I know that my body is not in a state of constant reactivity, and, as always, I hope that my recovery gives others hope for their recovery.

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The Last Time

Melissa’s Bio – I write from northeast Ohio where I live with my husband who is an attorney and with our two sons, 16 and 21, and our labradoodle, Luna(tic). In 1990 I graduated from Kenyon College with a B.A. in psychology and in 1996 I graduated with an M.A. in Counseling from John Carroll University. I recently survived 8 years of homeschooling with my sense of humor and some brain cells intact. I have been recently published in the 2017 Poet Haven’s Digest, Strange Land and The Poet’s Haven’s Digest, The Distance Between Insanity and Genius. My work also appears in issues 6, 7, 11, 12 and 14 of the Blue Nib Literary Magazine and The November issue of The Write Launch Magazine.

This is a guest post written by Melissa. If you are interested in having a guest post published on www.floxiehope.com, please contact Lisa through THIS LINK

Intro

Sixty to seventy percent of Americans take at least one prescribed drug during a time when new drug approvals have reached a 19-year high. Prescription drugs are the 4th leading cause of death in the USA with conservative estimates showing that 128,000 people die each year from taking prescription medications as prescribed. Properly prescribed drugs cause 1.9 million hospitalizations with another 840,000 patients hospitalized after being given a drug or drugs that cause serious adverse reactions. Here in the USA there is a 1 in 5 chance a drug will cause a serious reaction after approval.

There are 45 pages of side effects for the Fluoroquinolone antibiotic, Ciprofloxacin, on the website, Rx List. That’s 11,442 words describing potentially devastating side effects. Cipro was made in 1981 by Bayer, a German company. In 1987 the drug was approved by the FDA. By 1991 Cipro was available for intravenous therapy. Cipro was meant to treat serious life-threatening conditions. Instead the antibiotic has been overprescribed for simple sinus infections and the suspicion or presence of uncomplicated UTIs. Today it is widely prescribed along with other Fluoroquinolones.

Cipro was Black Box Labeled in July of 2008 because the drug was causing tendonopathy and tendon rupture. In February of 2011 the risk of worsening of symptoms for those with myasthema gravis was added to the Black Box Label. In August of 2013 a mandate was added to update the labels to describe the potential for serious irreversible peripheral neuropathy. In May of 2016 the FDA Advisory Committee advised that Fluoroquinolones should only be reserved for serious life-threatening conditions and only after other antibiotics were no longer an option. This advisory was given specifically to limit potentially permanent disability due to side effects occurring together. This group of side effects is called Fluoroquinolone Associated Disability (FQAD).  Cipro damages not only tendons but connective tissue and cartilage as well causing complications that result in painful disability. There are no accurate numbers on how many people are suffering with permanent disability due to FAD. When the last Black Box label was announced the FDA admitted that it had no intention of disseminating this information to physicians instead they commented that the onus is on doctors to stay abreast of prescribing related issues.

In 2012 I was given Cipro even though I had no infection and despite my objections about being given this antibiotic for purely preventative purposes I was persuaded by the physician who insisted that I take it. When I complained to the nurse explaining that my father in law had suffered a ruptured achilles tendon after just days of taking Cipro I was told that patients do not get to decide about what medications are acceptable and what medications might not be. I took it. About 3 weeks after taking it I started having intense pain in both hips. By late 2012 I was in surgery to repair a tendon rupture and muscle tear in my right hip. By the beginning of 2013 despite 8 months of targeted physical therapy my right leg had become weak and unpredictable in its ability to support me. It had become unresponsive and painful when I was attempting to stand or walk or even turn over in bed. By 2014 every activity in every aspect of my life had become compromised from tendonopathy, muscle weakness, and pain in both legs and hips. The tendons in my wrist hurt to weight bear. I have muscle spasms in my legs and hips. I have nerve pain in my fingers and feet. It’s permanent and disabling.

Like many people harmed in some way and unable to find answers from the medical community available in my area I have spent time meeting folks like me online. There are thousands and thousands of people online in closed groups, including physicians, looking for answers. The information has been valuable for me from those who have survived with FQAD although there are no cures and physicians and pain management doctors, including my own, mostly dismiss patients with various suggestions such as lose weight, eat better, and exercise. It helps to know I was dismissed in the same way others have been. It’s not me.

The interactions online have been devastating as well as helpful to me. When there are no answers, when people are cut off from appropriate pain medication, when people need to self-eject because days and nights are unacceptably horrific it is hard to experience this over and over and over. Losing friends while they lose their lives to FQAD feels like looking into a broken future. It is important for the medical community and pharmaceutical industry to understand that these people are committing suicide because their FQAD diagnosis came on top of other conditions already debilitating and largely untreatable and because there is no way to treat the damage from Fluoroquinolones. These folks have lost their marriages, their jobs, their homes to bankruptcy, their independence, their ability to sleep, their ability to love anything in life because of the pain and the loss. And because no one is listening and right now there is little hope that prescribing guidelines will change there will be more ‘eventualities’ and ‘acceptable casualties’ That is unacceptable.

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The Last Time

The first time I was born I came from Nowhere and Nothingness, undamaged, tended, cradled in the warmth of the inviolable vow of the Keepers of the hands that caught me and kept me and held me. From their places of knowing and despite their own scars their hands were soft and hard and supportive and real in their releases while I was just a Coming, a Going, a Staying, a Leaving, a Resident of a perdurable world which of course was a comfortable lie or miscalculated sentiment or just inexperience on my part. Those who labored for me also labored with me and I was bound up in a hope unfading that the dishonorable or unethical would not touch me or mar me. The foolish and unscrupulous dissected choice into gains and losses without care for consequences I knew but I was undaunted, naïve.

The first time I was born I was asleep in the warmth of the unknown, protected and sheltered, swaddled in my life untouched by the harsh. I was found and believed and defended and immersed in my unknowing. Clean air coursed through my lungs while pure sunlight bathed my retinas and the bitterness of unfixable injustice was only a storyline not any reality that would brush up against my sensibilities. Just an idea that tasted uncomfortable for the duration of a conversation. Just a sensation for consideration. All important things in life seemed changeable, controllable, knowable.

This birth was prolonged and lingering in its yearnful craving for logic or feeling in all things.

The second time I was born I clawed my way through a blanketed web of sticky greyness. My legs heavy and disconnected suddenly seemed so incredibly important in ways that I had never considered before and I experienced a violently urgent longing for every exquisite movement they had ever given me. My leg, when the tendon tear was complete, was useless and unable to carry my weight or the weight of the Last Times that I had no idea were actually Last Times.

A night time of regrets descended. A towering waterfall of Last Times rushed past me icy, impossible to grasp, oblivious of my needful wanting. When was the Last Time I ran? Give me a bucket to scoop up these memories. The Last Time I walked up steps with both legs? Carry me away to places I cannot see now. The Last Time I walked without pain? Give me back the steps taken from me. The Last Time I stood knowing my leg would respond when I told it to? What has been taken from me? Pouring itself into endless miles of new geography unmapped and darkly shadowed my waterfall gushed itself endlessly until it was a trickle of useless dirty water and the landscape around me was flooded with silty, mucky, old woulda beens. Debris from shattered relationships with myself drifted dismembered, mutilated, and lost to the pitch that swallowed the run off.

The Last Time I held what I thought was the manuscript to my life I was, as it turned out, only holding some damn preface. And what had been me, dammed up, wished upon, struggled over, picked apart, surgically carved up, taken down, worked over, out beyond past, in love with, dedicated to, resolutely advocated for in full view of every rough draft of myself, was washed away in a tsunami of wretched despair.

My head was clouded and thick with denial, clogged and dragged down with an anesthesia like kidnapping, congested with a paralyzing realization that resistance was futile but contractually obligatory. The seconds bled over into one another lost and wandering and stumbling as if time and space around me could not bend to this traitorous reality selling cures masquerading as magic in the forms of compromised elixirs one hundred percent legal and available and fillable all on the same day.

The entire place flooded and fortified with loneliness and then left abandoned and untended, desolate in its palpable ending, reeked of permanence. And something else too. Lies. Everywhere the stench of fatalities from lies. Lies believed and nurtured and loved into a bastion of respectability. “These things just happen. No one is to blame.” Lies trained specifically to bring down high value targets like strength and fortitude. “Get up. Your tolerance for pain is turning into shit.” Lies groomed for deception and misdirection. “If you fight hard enough you can leave this place whole again.” Lies meant to ambush and stalk and take hostages. “You should be able to do this. You are weak.” Lies deadly enough to squash up hope and dispense with it immediately. “He will leave you if you are this physically broken.” Lies programmed to go straight for the heart because after all that is where my truth lives. “Strong people tolerate quietly physical things that hurt them.” The truth is a dangerous thing. It is the most treacherous of all treacherous things. It will kill you when you have it and it will kill you when you don’t.

I am fine,” the lies panicked in my head drowning out any chance for rational thought. The intense pain, tore into every corner of me obliterating my barricades set up for safety and security. Dwellings completely my own, private places kept carefully organized were blown wide open, ransacked, my personal stuff raided, strewn far and wide. “You are lost and disbelieved and undefended, but I’ll keep you safe,” the lies crooned oily and certain, “until the situation stabilizes.” My confidence hung shredded like the tendon in my hip with little bits of myself left minced up trailing along behind me in a sad slick of denial. “Keep fighting. Be a warrior. Fight like a girl. Your plan of attack just needs some recon,” the lies encouraged. “You get what you deserve. Don’t surrender.” They led me, these lies, in little vicious, nasty circles of forgeries and falsehoods that started long ago on some researcher’s white board in some lab somewhere with words like ‘eventualities and acceptable causalities’ bantered about. They reached with dishonorable and shortsighted malice into the recesses of my reason and into the core of my psyche interrogating me under scorching lights and torturing me with questions that had no answers until I surrendered, until I gave what they wanted but not without a last sad gasp of hope whispered in desperation, “I’m not the one you are looking for.”

Unprincipled and perverted the lies infected everyone instantly, begging them to believe the untruths they coaxed so easily from their lips. After all this time, I have learned that some were just never meant to handle another person’s truth at all. The truth is loudly persistent and exhaustively complete in its ruthlessness.  Shrinking from the rebellious heat of the siege and the deafening rail of the formidable weaponry that comes with the minute by minute struggle of fighting something horrible in its permanence, something relentless in its ability to execute a flawless attack is normal. “You’ll be okay,” was the refrain always uttered with eyes averted meant with compassion but delivered with the kind of solemnity reserved for times when you really mean to say, “Sorry. There is nothing anyone can do about this.” Pain is always exquisitely, breathtakingly new to the person experiencing it. It so quickly loses its originality to those observing it.

I thought it would take so much more to drag me away from myself but in reality, all it took was a little pill loaded up and rattling hollow in a brown prescription bottle capped and labeled all official like so unassuming in its white purity and so mundane, so familiar to everyone, and raised to such heights of expectation for curative properties that it really almost seems impossible that something meant to save lives can slowly end them too.  What was needed in the end was the method of delivery: overprescribing, ignorance, and an entire industry corroded with the backwash of greed content to offer a whole category of antibiotics via random bullet spray rather than with thoughtful consideration. Weaponized formulas lurk waiting to be dispensed to a public that truly has no way of knowing who will be a casualty and who will escape harm. An industry primed to shape cures into tablets to silence the call of uncertainty, designed to produce capsules to ease the burn of anger, to crank out lozenges to numb the trivia of daily life, to manufacture gelcaps to remedy the longing for the past, to press tinctures to blunt the sting of the truth, to push potions to fill in the gaps of emotional and intellectual weaknesses, and to dispense antibiotics inappropriately to patients  without life threatening infections or any infection at all is an industry profiting off of  our physical and emotional livelihoods.

These antibiotics need to be aimed before they are fired. It is unethical to prescribe Fluoroquinolones with the potential for permanently painful disability to people who do not require them. I have taken any Fluoroquinolone for the Last Time but there are others out there who are targets awaiting a bullet. They will have no idea if their medication is locked and loaded. The truth is I was collateral damage. Dispensable. Just a person caught up in the humongous machine that is our healthcare system currently. Physicians who see patients struggling to live in shadow of FQAD need to know the truth about what it is like to cope with being permanently disabled by something that should never have been prescribed or what life is like living in constant pain from a medication that ruins tendons, connective tissue, and cartilage. It is dark where we are. It is lonely and ever changing as new symptoms emerge. Anger stirs here constantly with no place to go. And for those with few financial, emotional, and familial resources FQAD is fatal very quickly.

Questions abound here echoing off the walls of what is left of ourselves as we canvas for new paths, new ideas, any hope at all. I cannot ask the corporations making these antibiotics if they are aware of the high cost they have exacted on millions of lives but since corporations are people too I would like to. Do you know what you are taking from us? How many Last Times are enough for you? Could you tilt your head up a bit, so I can see your eyes before you answer? I need to see your eyes. The truth is always in the eyes. While I am waiting for answers, I’ll search the internet for new research and articles. I’ll hope for people with the courage to meet my gaze on my worst days because when I leave myself I need other people to understand where I go and how hard it is to make it back.

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