fluoroquinolone toxicity

Adverse Drug Reactions Are Like Earthquakes

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adverse drug reactions are like earthquakes

I often compare adverse drug reactions to earthquakes. People die in earthquakes. More people die from taking pharmaceuticals. Per Ethicist, Dr. Donald W. Light, “Every week, about 53,000 excess hospitalizations and about 2,400 excess deaths occur in the United States among people taking properly prescribed drugs to be healthier. One in every five drugs approved ends up causing serious harm, while one in ten provide substantial benefit compared to existing, established drugs.”

Earthquakes destroy lives, homes, towns, bridges, cities, etc. Likewise, pharmaceuticals can destroy muscles and nerves, induce peripheral neuropathy and mental illness, lead to a variety of multi-symptom chronic diseases, etc.

Earthquakes happen suddenly and without warning. Systemic illness brought on by pharmaceuticals often also happens suddenly and without warning. A myriad of symptoms can afflict a victim of pharmaceuticals in a matter of weeks or months – essentially simultaneously. It is as if every cell in the body of the victim has been shaken and damaged – leaving chronic illness and pain where health, wellness and vitality once stood.

There is ongoing damage after an earthquake. Aftershocks occur. For those suffering from chronic illness brought on by a pharmaceutical, relapses can occur. A new insult to the system, even one that would be benign to someone who was not already knocked down, can throw a person suffering from an adverse drug reaction into a tailspin of pain and suffering.

There is collateral damage after an earthquake when deaths occur not from the shaking of the earth itself, but from the damage done by the earthquake. When a person is hit by a pharmaceutical induced illness, there is also collateral damage. Not only does the health of the victim suffer, but other areas of life do too. Their relationships are burdened. Jobs are often lost. Homes are often lost. Money is lost.

Infrastructure is damaged when an earthquake hits a city. Systemic, chronic pharmaceutical induced illnesses (as opposed to allergic reactions or transient, easy to treat “side-effects”) damage multiple systems of infrastructure within a victim’s body. Systems upon which all aspects of health are built – the microbiome, the endocrine system, mitochondria, cellular homeostasis, etc. – are shaken and damaged by pharmaceuticals.

Earthquakes are terrifying to live through. So are adverse drug reactions.

Earthquakes vary in intensity. So do adverse drug reactions.

Some cities recover from the earthquake that knocked them down. Others are so devastated, so destroyed, that they will, sadly, never recover. The same is true for victims of adverse drug reactions.

The metaphor is apt but it is not complete (no metaphors ever are). There is one huge way that adverse drug reactions are nothing like earthquakes.

Earthquakes are natural disasters. Adverse reactions to pharmaceuticals are man-made disasters.

No one is held responsible for the earthquake, because no one caused the earthquake. It is a natural event and we are all at nature’s mercy. Pharmaceutical induced illnesses are not something that happens in nature or something that happens because of fate; they are something that occurs because of the negligence of companies and the humans that operate those companies. The makers of pharmaceuticals should be held responsible for the damage that their products do. There should be justice for the victims of pharmaceuticals.

If you’re hurt by a drug, you can sue, right? After all, the United States is the most litigious country in the world. People sue for all sorts of things all the time, surely those who are legitimately hurt by pharmaceuticals have legal recourse, right? And the legal system must be keeping pharmaceutical companies from hurting people, right?

Unfortunately for both the victims of pharmaceuticals, justice for victims is rare. Victims are unable to gain justice for multiple reasons, one of which being – if the “side-effect” of a drug that you suffer from is listed on the warning label for the drug, you can’t sue the drug companies for failure to warn. For example, if you suffer from repeated tendon ruptures that lead to pain and disability after taking Avelox/moxifloxacin, a fluoroquinolone antibiotic, you can’t sue the manufacturer (Bayer) because the warning label states that Avelox and other fluoroquinolones “are associated with an increased risk of tendinitis and tendon rupture in all ages.” Never mind that the warning label says nowhere that the structure of every tendon in your body can be altered permanently by the drug – lawyers won’t take the case because patients were “warned” by the label.

The Supreme Court did victims of pharmaceuticals no favor when they ruled on June 24, 2013, that generic drug manufacturers could not be held liable for the effects of the pharmaceuticals that they manufacture. A New York Times piece pointed out that, “The decision is a significant victory for the generic drug industry, but further narrows the recourse for people who are injured by such drugs.” People who have been hurt by a drug manufactured by a generic drug company have no recourse now – no chance for justice – regardless of how horribly they are harmed by a drug. Lawyers aren’t even looking at cases for people hurt by generic drugs.

Justice isn’t easy to come by. It rarely happens for victims of pharmaceuticals.

Pharmaceutical induced illnesses are just like earthquakes. No one is held responsible for the damage done. There is no justice for the victims. They are left to pick up the rubble of their lives on their own.

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.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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This article was originally published on June 23,  2014.

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Celebrating a Diagnosis of Chronic Illness? You Bet.

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celebrate diagnosis

I’m Celebrating Today, but not for the Reason You Would Think

Today is a day of celebration for me! However, my celebration is probably not one that someone would consider a reason to celebrate. You see I have spent years and years being ill, matter of fact looking back to my childhood, I can honestly say that I was never a healthy person. I was always suffering with one painful area after another. Then when I hit my early twenties my health began to spiral out of control. At first it was a slow progression, but with each passing decade the destructive progression of whatever this was began to speed up. I continued to fight like hell to push through whatever this was that was happening to my body. I spent countless hours crying in pain and more trips to the ER for help then I can even count. The doctors would run one test after another on me and find nothing other than inflammation of unknown origin.

As the years went by, I would find myself traveling the country searching out one specialist after another. Many would take a guess as to what was happening to my body and then some would tell me that it was all in my head and show me the door, while others would then label me with one autoimmune disease after another. Each autoimmune disease was based on whatever area of my body was inflamed at the moment. If my skin was inflamed they would label me with psoriasis. If the joints were inflamed I would get labeled with some form of arthritis like Lupus or RA. If it was my stomach or colon I would get labeled with Crohn’s disease and on and on it would go. By the time I hit my forties, I had truly become the queen diseases, yet no one really knew with any certainty what was wrong with me. During these years I would try one drug after another to help quell the progression and ease my suffering but most did very little and many caused more problems.

The First Clue: Ehlers Danlos Syndrome

A breakthrough would come in 2007 when I would be genetically diagnosed with several forms of EDS (Ehlers Danlos Syndrome). This would lead to several answers for many of my problems, such as Dysautonomia, Mast Cell Activation Syndrome, Myalgic Encephalomyelitis, etc.. However, it still did not account for the systemic inflammation, the deterioration that was now being seen in imaging or through other testing. It also did not account for the level of suffering and pain I was dealing with. On top of this there really wasn’t any treatment for EDS or the sub-illnesses it had caused. It would be at this point that my doctors and I would turn to just trying to treat my symptoms as they arose. This included pain pills, anti-seizure meds, stomach meds, etc.. Most of these treatments did very little other than to lessen the pain, but because the inflammation was still raging in my body like an all-out war, I continued to experience further disabilities due to destruction of joints and organs. My life had become a living hell to say the least!

Fluoroquinolone Toxicity Syndrome and Lyme: A Wonderful Combination

By 2011, after another bout with diarrhea, I was once again given another dose of Cipro, only this time combined with my prednisone. This would set off a severe reaction within my body known as Fluoroquinolone Toxicity syndrome. This reaction coupled with my EDS (which is a collagen depleting syndrome), would leave me bedridden for years. I would once again try like hell to fight my way back to some kind of normalcy. I finally had reached a point of being able to get up and take care of myself and began to be able to walk again. Now this is not to say that all my previous problems, pain and disabilities had also gotten better because they had not. As a matter of fact, they had continued to progress. However, I tried to adapt to my abilities, body and life and in celebration of being up and out again. We decided to take a trip to Tennessee. It would be this trip that would once again, throw my life into a turmoil. You see I had been bitten by a tick; one that was carrying a whole host of infections, which it so kindly infected me with.

For the next 8 years, I would aggressively attack all the tick infections I had been positively diagnosed with. It was a long arduous battle that kept me very ill and quite often bedridden again. Then just as it seemed that I was turning a corner with beating these infections, I would go into another “flare”, sending me reeling and back to my bed once again. My abilities and life had forever changed and not to the betterment either. Many nights, as I lied in my bed crying softly to myself, I would wonder if I would ever know a moments peace again. During some of those nights I would literally fantasize about dying and think how glorious it would be to be out of pain once and for all, but not having lived my life to the fullest yet, I would pull myself back from the brink of swallowing a whole bottle of pain killers.

The tick infections would go on for so long that I had lost the sense of who I was and who I once was. I had reached this point in my mind of thinking that if I could just get back to when I was younger, my life would be so much easier, because after all I had been healthy back then, right?! This somehow had become a false fantasy that I had placed in my mind, maybe because my health had become so bad that looking back on my youth made it seem as though I had been truly healthy, but in truth that was not the case. It would take going into cognitive behavioral therapy for me to look back on who I was and how unhealthy I really had been. This would be the dawning moment for me!

Ill Since Childhood

Once I had realized that my health had been going downhill literally from the moment I took my first breathe of life, I quickly realized that everything I was going through and had been through since taking that fatal dose of Cipro was not the end all to my health problems. This included the love kiss I also received from that fateful tick in Tennessee. No, my health problems dated far back into my earlier years and even after the diagnosis of EDS, there was still a sense of something more sinister still taking place within my body. It was something that no doctors had yet been able to place their fingers on, but it was something that was eating my body one cell at a time and leaving me in total and utter grief.

It would be then that I would begin to wake up and question the tick infections as still being viable within my body. I mean after all I had spent seven of the eight years saturating every cell and nook and cranny of my body with every kind of antibiotic, anti-fungal and anti-parasitic drug out there and this was not to mention the numerous alternative therapies. How could these infections still be so alive within me? How?! At this point I would sit down with my doctors one by one and go through my life, chapter by chapter, from one illness and label to another. I would question them on everything they knew and then some. In the end, they too would come to the same conclusion as me, this could no longer just be Lyme and company. No, there had to still be some sinister force lurking within my body; the same damn one that had showed up days after I took my first breathe of air and one that was continuing its ugly assault on my body, with no mercy!

The quest began, I was determined to find this beast and put a name to it. I made a promise to myself that I would not die without first being able to look this beast in the face and name it. I was going to find him within me and level this playing field once and for all! So, I began pouring through every medical book and journal out there. I was so intent on finding the answer that I literally kept a journal of every disease that had any possibility of being my monster. I came close to fitting hundreds of different diseases, but with the help of my doctors we were able to narrow it down to just a few. Once we had settled on a few, we began looking for any kind of definitive testing available for them. Thank God science has been moving at the speed of lightening over the past decade because they made our quest for diagnosing many of these diseases as easy as a DNA blood test. I would drag my ailing body into my doctor’s office week after week, throwing down one more disease to test for, but as each came back negative my hope for an answer slowly, but surely, diminished. It was as if someone had slowly let the air out of my birthday balloon and it left me as deflated as that balloon on the floor. Thank God my doctors were as curious as I was for an answer because they kept giving me encouraging words and propping me up when I thought the quest for the Holy Grail was over.

The last test, the very last test that we thought I might have was done and when it came back negative too, I collapsed on the floor, sobbing as if someone had stolen my new puppy. I cried for days on end, setting off my mast cell so bad that my face had swollen to a nearly unrecognizable state. I had been beaten and defeated and as I laid in my bed envying the people in the obituary columns. I began to think maybe this was still Lyme. What would it hurt to go back and try antibiotics once again? So, I set up an appointment with a new Lyme doctor and set off to see him. This doctor sat there listening to the story of my journey with wide eyes open and as my story continued I could see his facial expression go from “I think I can help you” to “I’m not going to be able to help you”. As I finished my story, this kind man sat back and explained to me that I still may have Lyme, but that there was something more at play here, maybe it was the EDS and all the sub-illnesses it causes, or maybe it was the floxing from the Cipro, or maybe it was this dark lurking beast that no one could pin down, but in any case, he was not sure that more antibiotics were going to bring me any further than I had already come. However, he was more than willing to administer them, but warned me that they would make me very ill again, worse then what I already was, and once I recovered, I would more than likely be right back to my baseline; the same baseline I was at sitting in front of him that day. Now, I thought for sure that I was going to fall on the floor and begin balling like a baby, but after a moment of thought, I realized this man just gave me the vindication that this more than likely was no longer Lyme and company, so there still had to be some sinister force lurking within me. So, I told the doctor to please run every Lyme and company test on me again, and while I waited for the results, I would go home and think about re-entering the world of antibiotics and Lyme.

Time to Regroup

I went home that night not as upset as I thought I would be and called my regular team of doctors. I told them what the new Lyme doctor had said and explained the route we were going to take with the tests and my thinking about treatment again, although my mind was already pretty much leaning toward not going down this road again. My team of doctors were thankfully on the same page as me and were quite supportive in whatever my decision was to be and in helping out in any way they could. Over the next few days, I would sit in complete silence going over every chapter of my life, page by needless page. I would recount every conversation with every doctor I had seen and mull over every test that had ever been done on me. Then it was as if a light bulb had gone off in my head. No, actually it was more like the finale to a great fireworks show on the fourth of July that burst from my brain! I quickly grabbed my notes and poured through them, I knew what was going on for the first time, it was all coming to light, the beast was being exposed and I had him cornered!

You see, I vaguely remembered a rheumatology appointment that I had had shortly after being diagnosed with IBD. The rheumatologist who I had been working with for over a decade had brought up this disease, but because he had given me so many labels of autoimmune diseases over the years, all of which I would now find out went along with this illness, that I took what he had said with a grain of salt and then threw it out like the baby with the bath water. Instead, I went back to my GI doctor who had just diagnosed me with IBD and felt this is where I needed to focus my attention and just maybe if we conquered this illness the rest would just fall into place. I never did go back to the rheumatologist and soon after that appointment, I would also be diagnosed with Lyme disease, a disease that could account for all my inflammation. This then quickly put the rheumatologist’s theory of a new diagnosis out of mind. I thought between the IBD diagnosis and the Lyme disease that I had finally found my holy grail and all would be well soon. Unfortunately, at that point in time it never dawned on me that my long standing systemic inflammation had started long before the tick bite and even the IBD diagnosis. Now, I don’t know if I just wanted it to be this easy (not that treating either of these illnesses was an easy walk through the park, but compared to what I had been through already it seemed like this was going to go smoothly from here on out) or if I just wanted to live in a state of denial and pray like hell that this was all there was. If I had only had a crystal ball way back when, so as to see that nearly a decade later I would still be suffering terribly, dealing with more body wide destruction and once again searching out the horrible beast that would still be lurking inside me. Maybe then I would not have thrown the baby out with the bath water, but instead took each new finding as being one step closer on my journey to meeting the beast face to face.

Eureka Moment

So, coupled with this vague memory and some new found information, I set out to look up the diagnostic criteria for the disease that I was sure this time was it. I sat there reading it line by line checking off each criteria I had met, and by the time I had reached the last point of criteria I realized that I had checked off every box! I looked up from my computer, while sitting there on my bed and felt as though the heavens had opened up and the sun’s rays came shining down on  me, all I needed now was a chorus of angelic singers to fill the room, like you see in some religious kind of movie where God opens the heavens down on to you and delivers the miracle you had so desperately prayed for!

Now as elated as I was, I knew I had to get my ducks in a row before once again bringing another disease to my doctors. So, I looked up the overview of the disease along with the symptomology, as well as any other testing needed to determine if someone had this illness. There was my choir of angelic singers, every note on the page poured out my life’s story of existence. Starting from the very early days of symptoms to the progression of the illness throughout my young adult life, to where I was at now. Not only could I see myself within these symptoms but also other family members, many who like me were in search for the mysterious beast lurking within themselves too. I would go on to see the sub-illnesses often associated with this disease and again like pages in the novel of my life there was each disease one after the other laid out in the succession I had so exhaustedly exhibited. Finally, the diagnostic criteria used in determining this illness would go on to show the systemic body wide destruction this beast would cause over a life time, the same destruction imaged and seen so often in my own health records. With all this knowledge now in hand you would think I would run off to the phone to call my team of doctors, but before releasing the congratulatory balloons, there was one more thing for me to check. I needed to know if and how this disease was related to EDS. So, I looked it up and there in plain sight was my answer, it was one of several sub-illnesses often seen alongside of EDS. Once again it was stated that people with EDS often suffer with this illness and as of yet like so many of the other sub-illnesses associated with EDS, there was no known reason or verifiable scientific connection as to why. Well, I had all I needed now, so it was time to let the team in on this one.

The Diagnosis: Ankylosing Spondylitis

I tried to stay calm as I called and messaged each doctor. I went through each bullet point I had made in my notes and then brought up the prior raising of this illness many, many years ago now. I laid out my case, like an eager new lawyer, I presented all the evidentiary evidence that had been collected over thirty years of living with this illness. I was precise and on point, I was ready for any of their questions, yeah I was in this to fight like a lawyer who was trying to save their client from the electric chair! When I finished pleading my case, I sat there in silence as each of my doctors took the information in and then there it was, those glorious words “OMG! You hit the nail on the head” They had never thought of this diagnosis and were unaware that a rheumatologist so many years ago had hit on this disease. Each of them had some vague knowledge of the disease and some had even treated other patients with it, but none had thought about applying it to me, mostly because I came to them without the diagnosis and my symptoms seemed to manifest over decades, leaving everyone bewildered. Once they had heard me plead my case point by point right down to this last flare which once again encompassed a part of my spine they knew I had hit the right diagnosis. I would then go in and get formally diagnosed. A week later the choir was singing my praises as the heavens opened to shine down on me. I was officially diagnosed with this disease. Okay it was time to tell the family and throw the celebratory party, you know the one that screams with pure joy “That I have a progressive inflammatory disease and it has a name, it’s called Ankylosing Spondylitis!!!!”

I had found the beast, I had finally seen his face and from here on out we were going to be on an equal playing field. I know to most people finding out that you have an awful progressive disease that is going to limit your abilities and turn your world, your hopes and dreams upside down and inside out, would be devastating to say the least, but for someone who has been chronically ill for years on end, it came as a sweet relief. You see chronically ill people live somewhere in between getting sick and death. What I mean by this is that we are all taught from an early age that if you get sick you just simply go to the doctor, who then runs his tests and diagnosis’s you. You then get a prescription which you take and within a few days to a week you are back up and rejoining the living world. Or we are taught that you get sick and you go to the doctor who then runs his tests and with sadness in his voice he explains to you that you have some awful deadly disease, which in turn you go home to prepare for your death. However, there is this place in between that getting sick and death and that place is known as chronic illness. It is a place where you go when your illness decides to never leave. It is place of fear, isolation, and loss of job, finances and quite often even family. It is also a place where patients often find themselves being abused at the hands of the very people who are supposed to be helping them find their way back to health: the doctors!

You see for most doctors, they are taught that if you cannot see the beast within the blood work or on imaging, then the beast does not exist. In cases like this, the doctors then turn on their patients and quite often blame the victim for their own suffering. The worst part is that in 2019 we know enough about autoimmune diseases and genetic defects to know that many if not most diseases can often take years to decades to fully present themselves and in the meantime, the patient can go on to suffer the low level of inflammation that is still not able to be detected through our archaic testing. Yet instead of working with the patient, however long that may take, most doctors show the patient the door and blame them for their own suffering. The world of chronic illness is like the black hole where frightened ill people get sucked into against their will, to never be seen as human beings and a part of society again.

Being Chronically Ill

The unfortunate fallacy propagated by the healthy and even some doctors is that the chronically ill are lazy, they just don’t want to work or they like the attention and so on and so on. Well, I can tell you that anyone who is chronically ill works harder on a daily basis then even the hardest working healthy people. You see we work hard at “faking it” for the healthy so they will believe us and not leave us. We work hard at trying to manage our finances so as to be able to afford our multiple doctor appointments and medications. We work hard at searching for that one doctor, the one who will finally draw the beast out of us and name it and work even harder at convincing a doctor that we truly are sick and in pain. We work hard at doing daily necessities like showering and shopping, things most people do without a second thought, but for us it can leave us wiped out only to pay for days on end. We work hard to keep hope, so that one day we will find the answer and slay the beast, because if we didn’t work hard at this we would have ended our life after the first doctor showed us the door! We spend countless hours with doctor Google, praying we get lucky and hit the mystery medical jack pot! On top of all this many must still care for their children, while facing family ridicule for not getting well. We live through guilt and shame and fear and ostracization from society as a whole. Many are accused of being mentally ill and for many of us, myself included, spend countless hours questioning our own sanity. We are accused by doctors, family and friends alike of being attention seeking, malingering, or suffering from somatization disorder, or worse yet drug seekers! Yet none of this could be farther from the truth. We, just like anyone else, want nothing more than to get better and return to our healthy lives or at the very least have the beast named so we can set out a plan of attack to assault the beast who has raged this war within our bodies. We don’t want to spend one more minute in pain, we don’t want to see one more crass rude doctor and God knows we do not want to swallow one more pill or supplement that leaves us with awful side effects, no we want to be like you, healthy and full of hope and joy for the future, only this time with a new found compassion for those who are fighting a silent beast within!

So, yes after years of being ill, after years of being tormented by our bodies, our doctors, our family and friends and after years of losing everything we have come to cherish in life, when that elusive miracle of facing the beast actually happens and we have found our Holy Grail, we rise to our feet and do the happy dance, we shout from the roof tops that we are “really” ill and no matter what the diagnosis is or what the prognosis of the disease is we are ready to celebrate and celebrate hard! For no matter what the diagnosis brings in the future, it surely cannot be as bad as the journey itself was to finding the beast. We once again find a new kind of strength, only this time we are not fighting ourselves, the doctors or the ones around us, but instead we are finally fighting the beast and we do it with a glorious smile on our faces and little spunk in our steps! So, today I am celebrating my disease, Ankylosing Spondylitis, matter of fact I think I will even get some balloons and a cake, do you think they can write on the cake “Congratulations on your progressive disease!” LOL!

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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Allergic Reactions or Iatrogenic Illness?

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Iatrogenic-illness

Allergic Reactions versus Toxicity Syndromes

When I was twenty, I had an allergic reaction to a sulfa antibiotic. I broke out in itchy hives while I was taking the sulfa, but the hives went away as soon as I stopped taking it. I had no other symptoms nor lasting effects. I don’t recall whether or not I took Benadryl to help me recover, but I imagine that it would have helped if I had. It was clear at the time that I was having an allergic reaction to the sulfa antibiotic, but if I needed it to be verified, there are tests that could verify and validate that I am allergic to sulfa drugs.

Twelve years later, I had an adverse-reaction to ciprofloxacin, a fluoroquinolone antibiotic. For more than a year after I took the ciprofloxacin, I experienced muscle weakness and pain; autonomic nervous system dysfunction including loss of balance, inability to sweat, digestive dysmotility, dry mouth, and dry eyes; central nervous system dysfunction including memory loss, inability to concentrate, loss of reading comprehension, anxiety, and brain fog; a loss of energy (I went from doing crossfit to barely being able to walk through a shopping center); and changes in my personality. My symptoms ebbed and flowed, with some lasting for years. All my symptoms arose after I stopped taking the ciprofloxacin, and many increased in intensity long after the ciprofloxacin “should” have been out of my system. Neither Benadryl nor any other pharmaceutical I tried did anything to alleviate my symptoms. There are no tests that verify adverse reactions to fluoroquinolones, and no doctors seemed to have any clue how to treat my symptoms.

Do you see the difference in my two experiences? You should. One was a couple of hives and an itchy weekend, the other was a life-altering experience that changed my physical abilities, my thoughts, and even my way of interacting in the world.

My reaction to the sulfa antibiotic was an allergic reaction. My reaction to the ciprofloxacin was something different, and to categorize it as an “allergy” is a mistake. I am allergic to sulfa drugs. My reaction to fluoroquinolones (cipro/ciprofloxacin, levaquin/levofloxacin, avelox/moxifloxacin, floxin/ofloxacin) was worse, and another exposure to a fluoroquinolone will likely lead to my permanent disability or death.

Fluoroquinolone adverse-reactions are categorically different from allergic reactions, rather, fluoroquinolone toxicity is a syndrome of multi-symptom, chronic illness that does not go away when administration of the drug has stopped. Fluoroquinolone adverse-reactions are similar in symptoms and scope to autoimmune diseases, fibromyalgia, ME/CFS, POTS, psychiatric illnesses, neurodegenerative diseases (like ALS and Parkinson’s), and other chronic, multi-symptom, illnesses that involve multiple bodily symptoms. Like many of those diseases, fluoroquinolones adversely affect gut health, mitochondrial health, liver health, neurotransmitter balance, mineral homeostasis, hormones, and more. Fluoroquinolone toxicity is a multi-symptom, chronic, syndrome, that, for many, is incurable. You can’t take a Benadryl to get rid of it. Some people recover (just like some people recover from autoimmune diseases), but there is no single path to recovery. 

Medically Induced Chronic Illness

Few people recognize that pharmaceuticals can cause multi-symptom, chronic illness SYNDROMES. They should though, because not only are millions of prescriptions for fluoroquinolones written each year (while rates of multi-symptom, chronic, mysterious illnesses go up, not entirely coincidentally), but fluoroquinolones are not the only drugs that cause multi-symptom, chronic, syndromes.

Benzodiazepine Withdrawal Syndrome

Benzodiazepines, and withdrawal from benzodiazepines, cause long-term illness that adversely affects the brain, and all aspects of the body. According to the Wikipedia entry for Benzodiazepine Withdrawal Syndrome,

“Benzodiazepine withdrawal is characterized by sleep disturbance, irritability, increased tension and anxiety, panic attacks, hand tremor, sweating, difficulty with concentration, confusion and cognitive difficulty, memory problems, dry retching and nausea, weight loss, palpitations, headache, muscular pain and stiffness, a host of perceptual changes, hallucinations, seizures, psychosis,[1] and suicide[2].”

There are many sources for additional information about the multi-symptom, chronic, illness of benzodiazepine withdrawal syndrome throughout the internet.

Post Finasteride Syndrome (PFS)

Finasteride/Propecia can cause a constellation of symptoms known as post finasteride syndrome (PFS). The Post-Finasteride Syndrome Foundation describes PFS as, “Often life-altering, PFS is characterized by devastating sexual, neurological, and physical side effects that persist in men who have taken the 5-alpha reductase type II enzyme inhibitor finasteride.” Men suffering from PFS experience symptoms long after administration of the drug has stopped. It’s not an allergy, it’s a syndrome. 

Lupron Syndrome

After taking Lupron, many women reported experiencing the following effects: loss of libido, muscle and joint pain, gastrointestinal disturbances, bone loss, hair loss, dry and cracked skin, blood-sugar abnormalities, cardiovascular and respiratory problems, brain and nervous system problems, etc. Lupron use led to a multi-symptom, chronic illness–a syndrome. 

Essure Syndrome

There is a Facebook group with more than 31,000 members for victims of Essure, a coil that is implanted into fallopian tubes to serve as permanent birth control. Many of the women who are victims of Essure have multiple, autoimmune-disease-like symptoms. For many of them, the Essure causes a syndrome of chronic illness and pain.

Singular Syndrome

Montelukast/Singulair, the asthma medication, has been linked with Churg Strauss Syndrome, an autoimmune condition that leads to inflammation of the blood vessels in the lungs. Churg Strauss Syndrome is a serious, incurable, autoimmune disease. It’s not an “allergy” to Singulair, it’s worse–it’s the triggering of a serious disease.

Other Medication Induced Syndromes

Lariam/mefloquine can cause ongoing, severe psychiatric problems. SSRIs, hormonal birth control, statins, and other drugs, can also cause multi-symptom illnesses. In addition to fluoroquinolones, other antibiotics can cause long-lasting syndromes. There are cases of thousands of young men and women who are suffering from the severe adverse-effects of the HPV vaccine. Even over-the-counter drugs can have long-term, multi-faceted “side-effects.”

Iatrogenic Illness Is Neither Rare nor Allergic

These iatrogenic illnesses are not rare, and it should not be a foreign notion that pharmaceuticals can cause chronic illnesses–there are thousands of patient reports noting that various pharmaceuticals have led to complex and long-lasting illnesses, and many chronic illness symptoms are listed on drug warning labels. Yet, I still receive messages like this one:

“I saw the head allergist at the hospital and still here. He said no such thing as being allergic to Levaquin. No test to prove it.”

By that doctor’s reasoning, the only adverse drug reactions that exist are the immediate allergic reactions that can be tested for and cured with antihistamines or epinephrine. Unfortunately, that simply isn’t true. There are many adverse drug reactions that look more like multi-symptom, chronic, mysterious, incurable illnesses than allergic reactions. It’s time for a paradigm shift among patients and medical providers alike to recognize not only that many pharmaceuticals can cause syndromes of illness, and that many of the recognized multi-symptom, chronic illnesses can be linked to (caused by) pharmaceutical use.

Patients who are suffering from pharmaceutical caused syndromes deserve recognition. The people who have recognized illnesses that can be linked to pharmaceutical use deserve to know that those links exist. Just because a reaction doesn’t fit into the “allergy” model, that doesn’t mean that it doesn’t exist. Pharmaceutical-caused syndromes exist, and they are just as devastating, and often worse, than recognized allergic reactions.

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This article was published originally on November 22, 2016.

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From Fluoroquinolone Reaction to Glabrata Infection, and Now, Lyme Disease: A Medical Nightmare

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This post is meant to inform and educate all my friends but, more specifically, the Floxies (individuals who suffer from reactions to fluoroquinolone antibiotics) about my recent health issues. This post will explain what is happening to me, but also, hopefully make others aware of this new illness and its relationship with fluoroquinolone reactions.

Recall that over the last several years I have suffered a number of conditions, exacerbated and/or induced by a reaction to fluoroquinolone antibiotics. In addition to the fluoroquinolone reactions that I experienced, last year I battled a deadly fungal infection called glabrata. Glabrata infections have become increasingly common with the use fluoroquinolones and other bactericidal antibiotics. Though I survived, I am now battling another infection; one that was likely present all along and misdiagnosed.

Lyme Disease

I recently found out that I do not have Crohn’s disease, spondyloarapathy or ME as previously suspected. A tick bite to my head left me with encephalitis (swelling of the brain) and meningitis (swelling of the spine). The symptoms emerged one week after the tick bite. I was hospitalized with amnesia, hallucinations (both visual and auditory), unable to put two thoughts together to make a sentence, and had to search for words to try and tell someone what I wanted. My speech also took on a stutter that to this day can be activated by fatigue or emotions.

I had and continue to have seizures that do not respond to usual drug treatments. The seizures would leave me for hours not knowing who I was or even able to recognize my own family. I would be treated with high doses of IV steroids in an attempt to bring the swelling down. It temporarily worked, but it was a double-edged sword because, as it was bringing down the swelling, it was also unleashing a slew of infections throughout my body.

Shortly after this event, I was diagnosed with Borrelia, Bartonella, Ehrlichia, mycoplasma, chlamydia pneumonia and Babesia. For those not familiar with tick borne infections let me let you know that Borrelia is Lyme disease and Bartonella, Ehrlichia, mycoplasma and chlamydia pneumonia are just a couple of the over thirty co-infections that the tick bacteria carry. Babesia, which is the worst of them all, is a Protozoa parasite from the family of malaria. Yes, that’s right, it’s a form of malaria!

Unfortunately, I would quickly learn that a tick bite I had four years ago and that gave me the typical bullseye rash, seen in up to 70% of cases, was my first exposure to several of these infections. Why is this so important? Well, if you do not treat these infections within the first six weeks they become chronic; meaning there is no way to eradicate them from the human body. Unfortunately, the medical profession is quite ignorant about these diseases and many do not even follow the CDC guidelines. My doctor four years ago, saw the rash. I told him about the tick bite and instead, of starting treatment immediately, he decided to test me for the illness first. As many know, the CDC testing for these illnesses is extremely unreliable with very high false negative rate. My tests came back negative, and so, I was not treated. At the time, I didn’t know about the pitfalls with these diseases or that a bullseye rash was a positive all by itself.

Within months of the first bite, I would start to have all kinds of weird things happen to me from ME symptoms, to spondyloarapathy symptoms, to dysautonomia, to MCAD to trigeminal neuralgia, to vasculitis, to Crohn’s like symptoms. As time went on, the problems would only mount, as infections slowly spread from one system to another, causing inflammation, destruction, pain and weird events that even my doctors were confounded by. I lived each day in terrible pain and spent weeks upon weeks in the hospital fighting one serious problem after the next. If I had not lived through it myself, I would not have believed that one person could suffer with so many symptoms throughout their body.

Lyme Disease and Fluoroquinolone Reactions

So, let me quickly step back here for a minute, shortly after the first tick bite, I was given Cipro for a suspected small intestine infection. It was three days into the Cipro treatments that I began experiencing fluoroquinolone toxicity. Since tick infections are neurotoxic too, it is difficult to determine whether my symptoms were tick-related, fluoroquinolone-related or both.

Apparently, when the bacteria from the tick dies, it releases a neurotoxic substance into the bloodstream causing severe toxic body-wide damage. This is known as herxing. Unfortunately, herxing and fluoroquinolone toxicity look exactly alike, so it is hard to say if I was herxing or floxed or even both. Making matters more difficult, many people with Bartonella are treated with the fluoroquinolones and they then go on to get floxed as well.

It is also important to know that the symptoms of Lyme disease and many of its co-infections look and act exactly like fluoroquinolone toxicity. This is because both cause mitochondrial, connective tissue, multi-organ symptoms. So these two illnesses act as one and the same and both are deadly in time. This is why this post is more for the Floxies. However, please know that ticks carrying these infections are located in every state, city, suburb and community throughout the world.

Ticks come in several sizes from the nymph that is no bigger than a period (.) to the size of a small raisin. They live in Chicago, Phoenix, and every other state and city throughout this country. No ONE is safe from them no matter where you live and over 60% of people will never even know they were bitten by a tick because they will not find it in the seven days that it is latched on. Just imagine something as small as a period attaching itself behind your ear, in your hair, in your groin or between your toes. You would never find it! And only 50% of folks with Lyme disease recall having a rash, so many may never know until they start getting sick. For those like me that do get tested, your chances of the test being positive or accurate is very low.

Lyme Disease Stats

This illness has become this century’s greatest plague as the numbers of people infected continue to grow by unbelievable rates. The CDC estimates 300,000 people are infected a year, but the ILADS which keeps better logs estimates the number to be closer to one million a year.

The death rate is in the thousands to hundreds of thousands a year. And those numbers do not reflect those who die from Alzheimer’s, ALS, MS, Parkinson’s, and several other diseases that are now being looked at by Harvard and Duke Universities as being symptomatic diseases of Lyme.

Lyme Disease and Neurodegenerative Disease

It has long been speculated that Lyme mimicked neurodegenerative disease processes, along with over 310 other diseases, but recent studies done on the brains of those deceased by these illnesses has shown a stunning revelation. Autopsy studies have found that a very large percentage (sometimes 100% ) of ALS, Parkinson’s and Alzheimer’s  have borrelia in the brain. (These finding were discussed in the movie: Under our Skin. Other good videos to watch on the topic include those by Dr. Richard Horowitz ). Because of these findings, many individual studies have since been done on these groups, by treating Alzheimer’s, MS and ALS patients for Lyme and co-infections. The studies were mind blowing. All groups responded immediately to the drugs, better than they did to any of the standard treatment drugs used to treat those conditions.

Unfortunately, they will never be cured because there is no medicine available today that is able to eradicate these infections from the body. Nevertheless, the progression of their diseases and their symptoms were reduced and that potentially bought them years more with better quality of life. This has been such an amazing discovery that Duke University just built and opened the first building totally dedicated to studying these infections, with the hopes of finding better testing, vaccines, and effective treatments. Seriously though, we are decades away from answers. So for now, those who are not infected must take all precautions with their animals and children, even in your own backyard. Those that are infected must get early diagnosis and better treatment. This means our government MUST look at all the studies and stop following the bought for IDSA guidelines, so that we can educate our doctors everywhere on how to spot it and how to treat tick born infections.

Calls for More Lyme Disease Research

Recently, there were marches across the country that very few news media chose to cover. There were big time athletes, actors, and rock stars that have had their lives nearly wiped out by this illness. Several are still fighting for their own lives, but are also taking up fight for this disease. Some of the more well-known people with Lyme Disease include: Yolanda Foster (the Beverly Hills Housewives), Ashley Olsen (actress from Full House), Avril Lavign (Pop rocker) and the list goes on. Many of these people are also facing the fact that their children are also infected because they were either bitten or it was passed during birth. Yes, that’s right these infections can be passed through the womb, as well as, through breast milk and blood. The CDC is just now beginning to address the nation’s blood supply, because 40% of those infected with Babesia were infected after a blood transfusion. This is a serious plague that is infecting our nation and our human existence. According to the CDC there are more people being diagnosed yearly with these infections than HIV and breast cancer combined!!! And as the global warming keeps ramping up the numbers are growing exponentially each year.

The Cost of Treating Lyme Infections

So, what is the average cost of treating Lyme and its co-infections? Well,  it estimated to be around $1.3 billion per year. This situation is being likened to the AIDS epidemic and those of us that are sick and fighting for our lives have to somehow find ways to speak out so that our government changes its attitudes and people lives can be saved.

My Health

I am fighting a losing battle at this time. What makes it worse, is that I had underlying conditions that have only complicated the illness and weakened my body. I will never be able to eradicate the Lyme infections from my body. Our hope is to slow them down and buy me some more time, but so far I have been losing the battle. The malaria symptoms appear to be overtaking me at this point.

My only blessing is that I have doctors that are working diligently to find a way to slow them down and keep me going. God bless Dr. Delacruz who even takes time on Sunday to call me and check in and let me know that he is praying every day for me. Unfortunately, every day is an unGodly struggle with pain, and I have been bed ridden now since June of this year.

My entire GI system has now gone into failure and my vascular system is quickly following. The malaria is to blame for this at this point. We are going start, yet another round of treatments, but as this infection grows stronger, the higher the risk of death is from the treatment. So far, the treatment has left me fighting fungal infections and SIBO as well as the herxing. We are forced to do everything by IV at this point, including my feedings. This is going to be a rough week, as we once again start a new regime of drugs. Since I literally just got out of the hospital a few days ago, I’m not looking forward to this. Now you know the fight I’m in and what I’m up against.

Unfortunately, I’m not in this fight alone my husband is also infected, as is my daughter, sons and granddaughter. My youngest brother who was diagnoses with MS almost twenty years ago and who has not responded well to treatments, has now also been alerted to this. He is now looking into finding treatment for Lyme. These infections have swallowed up my family and most who are infected are struggling with trying to get and afford treatment for their children and loved ones. To see what we go through with meds and to understand the cost of these infections, I posted some of the pics of my oral drugs. This is typical for Lyme Disease patients and this does not include the numerous IV drugs that we take daily. There truly are so many drugs that they didn’t all fit on the table. Many need multiple pill carriers to remind them if they took each one. You can see picks like this posted by Avril Lavign and many other Lyme patients. This is common to anyone who gets any of these infections and unfortunately, this is life long and daily, and most, like me, will still remain very ill and go on to lose their life. We need a cure and we can’t wait neither can our infected children wait.

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This story was published originally on November 12, 2015. 

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Two of the most commonly asked questions I face as someone with Lyme disease is “when were you bitten by

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. 

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The Fluoroquinolone Time Bomb – Answers in the Mitochondria

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Two of the more perplexing features of Fluoroquinolone Toxicity (an adverse reaction to a fluoroquinolone antibiotic – Cipro/Ciprofloxacin, Levaquin/Levofloxacin, Avelox/Moxifloxacin or Floxin/Ofloxacin) are delayed reactions and tolerance thresholds. Both of these features of Fluoroquinolone Toxicity can be explained by noting that fluoroquinolones have been shown to damage mitochondria and cause oxidative stress, and that delayed onset of a disease state, as well as tolerance thresholds, are features of illnesses brought on by pharmaceutical induced mitochondrial damage and oxidative stress.

Delayed Reactions and Tolerance Thresholds with Fluoroquinolone Reactions

By “delayed reactions” I mean that adverse reactions to fluoroquinolones can occur weeks, months or even years after administration of the fluoroquinolone has stopped.  For the lawsuit filed by Public Citizen on behalf of patients who tore or ruptured tendons after taking a fluoroquinolone, (a suit that prompted the addition of the black box warning on all orally and IV administered fluoroquinolones) notes that “Fluoroquinolones, including CIPRO®, are associated with an increased risk of tendinitis and tendon rupture in all ages. This risk is further increased in older patients usually over 60 years of age, in patients taking corticosteroid drugs, and in patients with kidney, heart or lung transplants”. Tendon tears and ruptures that occurred within one year of the patient taking the fluoroquinolone were accepted as being related to the patient’s fluoroquinolone use. Patient reports have noted that new adverse symptoms of fluoroquinolone toxicity have occurred years after administration of the fluoroquinolone has ceased.

Many patients also experience a tolerance threshold for fluoroquinolone use.  A patient can tolerate fluoroquinolones well, experiencing few or no side-effects, until his or her threshold is reached.  After the patient’s tolerance threshold is reached, multisymptom systemic illness ensues. This patient’s story, found on the Fluoroquinolone Wall of Pain, illustrates the issue of tolerance thresholds:

On April 15, 2013 I was prescribed Avelox. I had been on this drug many times for chronic sinus infections. This time was different. Within 10 minutes of the first dose I went into anaphylaxis. I stopped breathing, had numerous convulsions and two grand Mal seizures. Since that day I have suffered with seizures, convulsions, tremors, debilitating fatigue, muscle weakness, vision loss, severe neuropathic pain, vomiting, nausea, lack of appetite, tendon, and vein problems.

This patient tolerated Avelox (moxifloxacin – a fluoroquinolone) well until her tolerance threshold was reached. Once her tolerance threshold was reached, she experienced multi-symptom systemic illness.

I personally experienced both a delayed reaction to Cipro/Ciprofloxacin (also a fluoroquinolone) and a tolerance threshold for it. I took 7 500-milligram pills of Cipro in 2009 without notable incident. I was even able to hike the entire 500-mile Colorado Trail in 2010 (no peripheral neuropathy or weakness were present at that time). When I took 7 more 500-milligram pills in 2011 I experienced a severe adverse reaction that began two full weeks after I was done taking the pills. I experienced multiple musculoskeletal (I couldn’t walk more than a block) and nervous system symptoms (I lost my memory and reading comprehension), and I would describe the reaction as feeling like a bomb had gone off in my body.

Fluoroquinolone Time Bomb: It’s All About the Mitochondria

My experience of a delayed onset of systemic health issues after having previously tolerated Cipro/Ciprofloxacin well, is typical of diseases that are brought on by a pharmaceutical causing mitochondrial dysfunction. (Multiple journal articles have noted that fluoroquinolones cause mitochondrial damage and oxidative stress.)

In “Mechanisms of Pathogenesis in Drug Hepatotoxicity Putting the Stress on Mitochondria” it is noted that:

…damage to mitochondria often reflects successive chemical insults, such that no immediate cause for functional changes or pathological alterations can be established. There is indeed experimental evidence that prolonged injury to mitochondria, such as that which typifies oxidative injury to mitochondrial DNA or to components of the electron transport chain (ETC), has to cross a certain threshold (or a number of thresholds) before cell damage or cell death becomes manifest.

Each time mitochondria is injured, the patient gets closer to his or her personal tolerance threshold for mitochondrial damage. Once the threshold is crossed, cell damage and apoptosis occur – which manifest themselves in various states of illness.

It is further explained in “Mechanisms of Pathogenesis” that:

…approximately 60% of mitochondrial DNA must be deleted from the mouse genome before complex IV activity is compromised and serum levels of lactate are elevated. This non-linear response can be explained upon consideration that the molecules that subserve mitochondrial function (e.g., mitochondrial DNA, mRNA, and ETC proteins) are present in excess of amounts required for normal cell function. This reserve (or buffering) capacity acts as a protective mechanism; however, at a certain stage of damage, the supply of biomolecules needed to support wild-type mitochondrial function becomes compromised.

The lay person’s summary of the above excerpts is that we have excess mitochondrial DNA and that excess mitochondrial DNA keeps each of us from developing a systemic multi-symptom illness whenever mitochondrial DNA is adversely affected (many pharmaceuticals and environmental toxins adversely affect mitochondrial DNA). However, when mitochondrial DNA is depleted sufficiently, cellular dysfunction, oxidative stress and cell death, ensue.

Multiple studies have noted that fluoroquinolones deplete mitochondrial DNA (here, here and here).  When enough mitochondrial DNA are depleted, adverse reactions that are systemic and include multiple symptoms simultaneously, occur.

Multi-Symptom Reaction: Look to Mitochondrial Damage

It is often difficult for the patient who is experiencing a systemic multi-symptom illness to connect his or her illness to the mitochondria damaging drug or toxin that hurt him or her because of the time delay between the cause (mitochondria damaging chemical) and the effect (bomb going off in body and mind). Though the delayed onset of fluoroquinolone toxicity and mitochondrial dysfunction symptoms are noted in many articles (here, here), the reason for the delayed onset of symptoms is not known.  In “Mechanisms of Pathogenesis” it is hypothesized that “an initial adaptive response was followed by a toxic response” when cells are exposed to a mitochondria damaging chemical. Perhaps the delay in adverse reaction onset is due to a toxic response taking time to develop.

Many pharmaceuticals damage mitochondria. Bactericidal antibiotics (including fluoroquinolones), Statins, acetaminophen, some chemotherapy drugs, vaccines, and many others, cause mitochondrial dysfunction, oxidative stress and cell death. Mitochondrial dysfunction and oxidative stress are connected to a variety of ailments, from chronic fatigue syndrome to Alzheimer’s disease and obesity. However, the FDA and other drug regulatory agencies have systematically ignored damage to mitochondria caused by pharmaceuticals and “mitochondrial toxicity testing is not required by the US FDA for drug approval.”

The recognition of delayed adverse reactions and tolerance thresholds for mitochondrial damaging drugs and vaccines will go far in helping both doctors and patients to recognize mitochondrial damage related adverse drug reactions (and adverse vaccine reactions). Once the reactions are recognized, perhaps some pressure can be put on the FDA and/or the pharmaceutical companies to test how drugs affect mitochondria before they are released onto the market. After all, mitochondrial damage and oxidative stress are causally related to almost every chronic illness.  It would be nice if doctors, those in the pharmaceutical industry, the FDA regulators, and others, recognized the harm that drugs do to mitochondria, and the symptoms of iatrogenic mitochondrial dysfunction.

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.

Share Your Story

If you have suffered from a fluoroquinolone or any other medication reaction, please consider sharing it on Hormones Matter.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter.

Image was created using Canva AI.

This story was published originally on Hormones Matter in March 2014.

 

 

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Don’t Take Cipro, Levaquin or Avelox If….

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Lisa Bloomquist flouroquinolone antibiotics

There is a huge range in how people react to fluoroquinolone antibiotics (Cipro/Ciprofloxacin, Levaquin/Levofloxacin, Avelox/Moxifloxacin and Floxin/Ofloxacin). Some people take fluoroquinolones repeatedly and never experience an adverse reaction. Some people are left bed-bound after one pill, or one prescription. Some people take a full fluoroquinolone prescription without incident at one time in their life, then, when they take a second (or third, or fourth) prescription, their body goes hay-wire. Some people have a sudden and severe adverse reaction, where they are unable to move or think after previously being fine, and other people have a gradual onset of symptoms where they damage tendons or develop neuropathy slowly, over time.

What determines how a person reacts to fluoroquinolones? The black box warning label on fluoroquinolones states that, “risk (of tendinitis) is further increased in older patients usually over 60 years of age, in patients taking corticosteroid drugs, and in patients with kidney, heart or lung transplants.” But people who fit into those categories aren’t the only people who are hurt by fluoroquinolones. I didn’t fit into any of those categories. I was 32, athletic, strong, not on any medications, etc. when I was sickened by Cipro. I was healthy. But fourteen 500 milligram pills of Cipro (half taken in 2009 without incident and half taken in 2011 with a sudden severe adverse reaction) were enough to cause my body and mind significant harm.

I must have had risk factors that made me susceptible to fluoroquinolone toxicity though, because Cipro made me quite sick. I’m honestly not sure what those factors are (no one knows – or at least they aren’t publishing papers about it if they do). Perhaps those who are hurt by fluoroquinolones have depleted liver enzymes and therefore they aren’t able to metabolize drugs like people who have more robust supplies of drug metabolizing enzymes. Perhaps people who suffer from fluoroquinolone toxicity are depleted of cellular magnesium, as magnesium has been shown to have protective effects on cells that are exposed to fluoroquinolones. Perhaps the microbiome of those who are hurt by fluoroquinolones is depleted of good bacteria and an overwhelming number of bad bacteria in the gut leads to many of the symptoms of fluoroquinolone toxicity. Perhaps there are some people who are genetically predisposed toward having an adverse reaction to fluoroquinolones. As with everything, there is a mix of genetics and environment that goes into how the body reacts when faced with a chemical onslaught. Human bodies are unbelievably complex and multifaceted; once individual differences are considered, the complexity becomes mind-boggling.

Customizing medicine is difficult. The entire human genome, though sequenced, has not yet been mapped out. We are not at a point yet where we can easily and inexpensively test genes and interpret the results of genomic tests.

Genes aren’t the only things that determine how a person reacts to a drug. The microbiome also plays an important role in determining drug metabolism. Per an article entitled, Role of Intestinal Microflora in Xenobiotic-induced Toxicity, “individual differences in the intestinal microflora may result in individualized xenobiotic (a chemical or substance that is foreign to an organism or biological system) toxicities.” The differences in the bacteria in our gut make a difference in how drugs are metabolized. As the microbiome is changed, through drugs – especially antibiotics, the reaction of the individual patient to formerly well tolerated drugs, can change.

Until customizing medicine to the individual becomes feasible, what are doctors supposed to do to prevent their patients from having a dangerous adverse reaction to a drug? Drugs with potentially devastating adverse effects could be avoided entirely unless they are necessary to save a life. This is the policy that I would like to see applied to fluoroquinolones. (The cellular damage that fluoroquinolones inflict make their use inappropriate for infections that are not life-threatening.) Unfortunately, prudence in regards to prescribing fluoroquinolones is not the current trend. In 2011, 23.1 million prescriptions for fluoroquinolones were written in the U.S., and despite the 43 page warning label that comes with Cipro/Ciprofloxacin, fluoroquinolone toxicity is denied by many physicians. As much as I would like to cut the number of fluoroquinolone prescriptions by 90%, the entire medical establishment is not yet listening to me and others who are screaming about the pain and suffering caused by fluoroquinolones. To reduce the number of people hurt, either a study or news story must induce a paradigm shift enabling all doctors to see that fluoroquinolones are vastly more dangerous than penicillin, or patients (especially those in the risk categories listed below) must ask their doctors to not prescribe them.

Though the true risk factors for fluoroquinolone toxicity (genetic, enzyme and microbiome markers) are not yet established, there are some groups of people who are at higher risk of an adverse reaction than others. They should never be given fluoroquinolones. Those groups are:

  1. People who have had an adverse reaction to a fluoroquinolone in the past. Despite the fact that all of the warning labels for fluoroquinolones state that they should not be given to people with a history of hypersensitivity to fluoroquinolones, the recommendation that they be avoided is often ignored. This is the case because people often don’t realize that they are having a mild adverse reaction to a fluoroquinolone. Who would think that muscle twitches, insomnia, urgency when urinating or loss of endurance would be related to the administration of an antibiotic? The connection is so bizarre that it is often not recognized. A list of warning signs that your body has reached its threshold for fluoroquinolones can be found here: Warning Signs of Fluoroquinolone Toxicity.
  2. Athletes. It is well documented and known that fluoroquinolones degrade the structure of tendons. They “exert a toxic effect not only on tendons but also on cartilage, bone, and muscle,” per a Mayo Clinic affiliated article entitled Musculoskeletal Complications of Fluoroquinolones: Guidelines and Precautions for Usage in the Athletic Population. Further information about why the Mayo Clinic researchers note that, “Athletes should avoid all use of fluoroquinolone antibiotics unless no alternative is available” can be found here: Deciphering the Pathogenesis of Tendonopathies: A Three Stage Process.
  3. People on steroids. Steroids are contraindicated with fluoroquinolones. As is noted in the Cipro/Ciprofloxacin warning label, people who are on corticosteroids are at an increased risk of tendonitis when administered fluoroquinolones. In addition to the increased risk of tendon damage, the combination of steroids and fluoroquinolones can increase the risk of development of a deadly glabrata fungal infection.
  4. People who need to take NSAIDs regularly. NSAIDs, and other drugs that contain a carboxylic acid molecule, are contraindicated with fluoroquinolone toxicity. Patients suffering from fluoroquinolone toxicity have reported adverse reactions to NSAIDs even weeks or months after they have stopped taking fluoroquinolones. The adverse interaction between fluoroquinolones / fluoroquinolone toxicity and NSAIDs is likely because of the formation of poisonous acyl glucuronides. Articles describing this process can be found on Fluoroquinolone Links and Resources.
  5. Immunocompromised individuals. Fluoroquinolones, and other broad spectrum antibiotics, kill good bacteria along with harmful bacteria. When the good bacteria in the gut are wiped out, they can no longer keep the bad bacteria, or fungal infections, in check. Fungal infections can take over a person’s body and they can be deadly. This can happen with people who have healthy immune systems. For people with already compromised immune systems, vulnerability to fungal infections may be increased. Per an article in Life Extension Magazine, “Anyone can acquire a fungal infection, but the elderly, critically ill, and individuals with weakened immunity, due to diseases such as HIV/AIDS or use of immunosuppressive medications (such as corticosteroids), have a higher risk.”
  6. People with mitochondrial dysfunction. Per an article entitled Mitochondrial Reactive Oxygen Species Control T Cell Activation by Regulating IL-2 and IL-4 Expression: Mechanism of Ciprofloxacin-Mediated Immunosuppression, “ciprofloxacin was also shown to deplete the mitochondrial DNA (mtDNA) content, thus leading to mitochondrial dysfunction and retarded cellular growth.” Ciprofloxacin and other fluoroquinolones damage mitochondria. Those with preexisting mitochondrial dysfunction will suffer more as their mitochondria are further damaged.
  7. Children. Fluoroquinolones have been shown to degrade cartilage in juvenile animals and, for this reason, are generally considered to be contraindicated in the juvenile population. Unfortunately, children are still prescribed fluoroquinolones by pediatricians who are unaware of the severity of adverse reactions to fluoroquinolones.

Until medicine is more individualized and every factor that makes a person more or less susceptible to experiencing an adverse reaction to a drug can be tested before that drug is administered, everyone who takes a fluoroquinolone is at risk of experiencing an adverse reaction. The best way to protect oneself from fluoroquinolone toxicity is to not take a fluoroquinolone. Though there are some risk factors that make some groups of people more susceptible to experiencing a severe adverse reaction to fluoroquinolones than others, there is no guarantee that not fitting into one of those groups will ensure your safety. With that noted, the people who fit into any of the seven categories listed above should avoid fluoroquinolones whenever possible.

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.

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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.

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This post was published previously on Hormones Matter in January 2014.

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

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glabrata

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 fungicides. Caspofungen 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.

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