Tag Archives: Antibacterial

The Silence Around Fluoroquinolone Toxicity

I posted this – http://www.hormonesmatter.com/epidemic-silence-adverse-drug-reactions/ on Hormones Matter on October 17, 2013.  It was originally similar to the post below but I changed and edited it until it became what I submitted to Hormones Matter.  I still like the earlier draft and since it’s more Flox focused, I thought I’d share it on here.  As always, thanks for reading!

The Silence Around Fluoroquinolone Toxicity

One of the more bothersome feedback loops that keeps the dangers of fluoroquinolones from being recognized is that people stay silent about their pain and suffering, and therefore their pain and suffering is not recognized or appreciated, and everyone in the medical field gets to continue to think that these drugs are safe and that adverse reactions are rare. Seeing is believing and they don’t see it, in part because people aren’t screaming. Of course, there are people who are screaming at the top of their lungs about the pain and suffering caused by fluoroquinolone antibiotics who are systematically disregarded, and that’s a problem that has bothersome consequences and feedback loops as well, but it’s a topic for another post. This post is about people suffering in silence about the pain that Cipro, Levoquin, Avelox or Floxin has caused them.

People stay silent for a variety of reasons. There is a lot of shame associated with getting sick. People feel bad about what they can no longer do. They feel responsible for the role that they played in taking those pills, or insisting on them from their doctor, or administering them to their child, and they hide in shame. Also, a lot of the adverse effects of fluoroquinolones are CNS related, meaning that they can adversely effect many areas of mental health. People are notoriously ashamed and silent about mental health issues. It is easier to deal with anxiety, memory loss, depression, panic, etc. alone, in silence, than it is to speak up about what happened. After all, if you speak out about experiencing mental health issues, you run the risk of being labeled as crazy. Additionally, Fluoroquinolone toxicity takes its toll on every system in the body and therefore it is difficult to describe what is going wrong. How does one explain, to anyone, that EVERYTHING is going wrong? It’s too difficult and people sound and feel crazy, so they stay silent. When people ask their doctor about the possibility that the drug that they took caused the myriad of symptoms that they now experience, and the doctor denies that it’s possible that the drug that they prescribed could do what it has done, people assume that their doctor is right, or that they at least aren’t entitled to question their doctor’s expertise. After all, their doctor went to school for a long time and knows what they’re talking about… right? So people assume that they are wrong, their doctor is right, and they stay silent. There are a variety of other reasons why people stay silent about the travesty that is Fluoroquinolone Toxicity. All of them feed into the real risks of these drugs being under-recognized. The silence is, sadly, as much of an epidemic as the pain.

A friend of mine went to a Psychologist to help her to get through the mental and emotional trauma of being Floxed and she told me that, as she was telling the Psychologist her story, the Psychologist started to cry because a few years ago her (the Psychologist) knee swelled up and she experienced over-all tendon inflammation after taking Levoquin. When she asked her Doctor about it, her Doctor told her that the Levoquin couldn’t possibly be the cause of her pain. She knew differently but didn’t say anything. She recovered and didn’t think much of the period that she went through with painful, inflamed tendons much again. My friend’s experience and story validated the Psychologist’s pain, suffering and notion that Levoquin was the cause of her tendinitis, and it freed her to be able to acknowledge that she too was a victim of fluoroquinolone antibiotics. Before my friend visited her, the Psychologist thought that she was wrong, or the only one, or that her Doctor must know better, or that her story didn’t matter enough to scream about it – after all, she did recover – and she suffered in silence. She didn’t get the support that she deserved. She didn’t get the acknowledgment that she deserved. No one saw her pain and suffering because no one, including her, acknowledged that it existed.

I went out on a date a few months ago with a guy who was clearly Floxed but he didn’t know it until I told him my story. He had been treated with multiple types of antibiotics for a “chest infection” that was really acid reflux that was making him cough incessantly. He kept going back to his doctor for more and more powerful antibiotics because the mild antibiotics that he was given didn’t get rid of his cough – of course, because it wasn’t from an infection. His doctor eventually prescribed him Cipro and he had an adverse reaction to it. Most of his adverse reaction was mental (but he also lost his endurance and had an increased heart rate that he struggled to get down). He had a severe anxiety/panic attack and he thought that he was about to die. His sister flew to the U.S. from Sweden to be at his side because he thought he was dying. He lost his memory. He lost his composure and was barely able to do his job in software sales. He was clearly sick. But he stayed silent because he was ashamed of having mental issues. He never connected his sudden onset of mental health issues and the antibiotics that he took, and thus his doctor got to continue to think that he was a healthier than average person and that Cipro was a perfectly safe drug.

I have always talked about what was going on in my body and mind. Silence is not something that I have ever been afflicted with. I have always felt the need to be understood, to be recognized and for my pain to be acknowledged. I am lucky enough to have friends and family members who listen to me. Despite being a talker, I still felt like I lost my voice for a while. I felt like I couldn’t really explain what was going on. I felt like there was a wall between myself and those that I was trying to talk to. I think that feeling socially isolated is a symptom of being Floxed and that it’s really difficult to explain something like Floxing to people. It is ABSURD that a prescription antibiotic that is used all the time could cause my body and mind to explode like it did. I knew that what I was saying sounded absurd, and that people didn’t understand what was going on, so there was that barrier to my voice being heard. It didn’t stop me from yapping though. 🙂

I hope that all of you who are afflicted with silence start screaming about your reaction soon. It’s not okay that you were hurt by a prescription antibiotic. It’s not okay for these drugs to take away your ability to walk, your ability to think, your ability to speak, etc. I hope that you all gain your voice back, that we are all heard, and that this absurd situation starts to change.

 

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Is Our Meat Floxed?

My favorite theory about the pathology/cause of floxing (of course, fluoroquinolone use is the CAUSE of floxing, but not all people who use fluoroquinolones get floxed – something goes horribly wrong in the bodies of the people who do), is that a neurotoxin is produced by the damaged bacteria within the body and that neurotoxin is the actual cause of the health problems that Floxies experience. More information on this theory can be found on https://floxiehope.com/2013/06/20/test-post/ and at the bottom of this page.

This theory, that neurotoxins are produced when fluoroquinolones mess up the bacteria, makes me think about a lot of things. One of these things is our meat.

Fluoroquinolones are used rampantly in agriculture, even though there has been some regulation limiting their use. If fluoroquinolones cause the production of neurotoxins, could it be possible that these neurotoxins are in the flesh of the animals that are exposed to fluoroquinolones – the meat that we eat? If so, what are the health consequences of this to the humans who eat that meat?

I believe that meat is tested for antibiotics and other agriculturally utilized pharmaceuticals before it goes to market, but if the meat is actually contaminated with a neurotoxic byproduct of the pharmaceutical, as opposed to the pharmaceutical itself, then maybe the wrong thing is being tested for. Is our meat contaminated with neurotoxic byproducts of fluorquinolone antibiotics? I don’t know, but it’s something that is definitely worth looking into.

Admittedly, this line of thinking involves a lot of unproven jumps and assumptions, but I don’t think that I’m being completely unreasonable. The theories described below seem more than reasonable, they seem right, and I think that looking into the health consequences of eating meat that is from animals that have been floxed is something that we should do. Question everything. It’ll keep you safer and make you smarter.

There are many good reasons not to use fluoroquinolone antibiotics on livestock animals. Antibiotic resistance is becoming a bigger and bigger problem and the thought that we may be breeding antibiotic resistant bacteria in our feedlots is appalling. This problem, though not without controversy, is generally acknowledged and some regulation is being put into place to try to prevent an atrocity from happening. However, humans are slow to change the status quo unless there is an emergency and I doubt that real, meaningful regulation will come about until an antibiotic resistant bacteria is bred in feedlots and that bacteria infects people. Antibiotic use in livestock also enables ranchers to keep their animals in dirty, unsanitary, inhumane conditions – something that is also appalling. Even though I haven’t done a whole lot of research into the topic, I think that with the research that has been done, we can add potential contamination with neurotoxic byproducts to the list of reasons that antibiotics generally, and fluoroquinolones specifically, should not be used in livestock.

I like meat and I eat it, but I’ve tried to exclusively consume organic meat since I got floxed. I’m going to try harder now. I suggest that you do the same.

From https://floxiehope.com/2013/06/20/test-post/

Is a neurotoxin produced by the damaged/bad bacteria after exposure to fluoroquinolones (or the die-off of the “good” bacteria that keep the bad ones in check)?  There are several interesting things noted in Beyond Antibiotics by Michael Schmidt.  Dr. Schmidt points out that both tartaric acid and tricarbalyte are noxious compounds produced by bad gut bacteria when good gut bacteria in the gut are not available to keep them in check.  Tartaric acid “is a known poison of the energy system of mitochondria,” and tricarbalyte “binds to magnesium and may reduce the availability of dietary magnesium.”  (pages 28-29) Dr. Schmidt also says that antibiotics cause the production of clostridiam which is a known neurotoxin producing organism (p. 44). And, on page 47 he says, “Whever a CPY enzyme is blocked or slowed, its ability to detoxify other drugs can be impaired.”  My thought on this is that the fluoroquinolones slowed our CPY enzymes then the NSAIDs, steroids, other toxins in our system, did other damage – and maybe that’s why each of us have so many different symptoms.

Also, John Travis reported in Science News (July 2003;164) that research performed by John F. Prescott found that certain antibiotics, such as the fluoroquinolones, the class of antibiotics that includes the name-brands and generic brands of Levaquin[R], Cipro[R], Tequin[R], and Avelox[R], actually are known to trigger a type of virus called bacteriophages (viruses that can infect bacteria) to change the genetic sequencing of the bacteria, causing the bacterium they have infected to start producing toxins. These viruses can act as genetic delivery vans, invading bacteria, such as spirochetes, often lying dormant, until activated by a change in the host (your body’s) environment. Once activated, these viruses insert their toxin-generating genes into the bacterial chromosomes. These viruses can turn basically harmless bacterium into killers through this genetic sequencing of toxins (Travis 2003).  Not only are these toxins released through bacteria die-off and not only can antibiotics actually increase the production of the toxins, but these viruses can cause the bacteria to rupture, spilling their toxins into the body (Waldor 2004).  http://www.benbrew.com/lb/lyme5.pdf

* I haven’t had the time to do a whole lot of research into this theory, so if anyone has any articles about it, please forward them on to me.

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Fixing Fluoroquinolone Toxicity is IMPORTANT!

Your health is important.  Fight for it.  Because it matters.

Your voice is important.  Scream for justice.  Because it matters.

Your life is important.  Live life like it’s important.  Because it is.

Showing others that their life matters is important.  Because it does.

Doing something, anything, and I’m honestly not sure what direction to go, about the problems associated with fluoroquinolones, is IMPORTANT.  It’s not okay that any of us were hurt by a prescription antibiotic.  There is nothing okay about that.  We are not collateral damage, we are not small numbers (of people) (of people is in parentheses because it barely matters to some – we’re numbers ) who are adversely effected by an otherwise good drug – we’re PEOPLE whose lives matter.  And it’s important that we scream and let the people and the system that is disregarding us know that WE MATTER!  It’s important for us to change the medical (and maybe the American, and maybe the world) culture that views it as okay to treat people as if they don’t matter, as if they’re collateral damage.  It’s really important.

There are children, even babies, who are given fluoroquinolones – typically in the form of ear and eye drops to treat ear infections and pink-eye.  It is our biological and moral imperative to protect our children.  And by our children, I don’t just mean our biological children, I mean all children.  IT IS REALLY IMPORTANT THAT WE PROTECT CHILDREN FROM THESE DRUGS!  The knowledge that fluoroquinolones are contraindicated in the pediatric population is as easy to access as a Wikipedia article, yet kids, innocent babies that are depending on us to protect them, are being given these drugs because their doctors are not heeding the warnings.  We MUST protect the children.  We must.  Because it’s really, really, really IMPORTANT.

In prescribing a fluoroquinolone in a situation that was not life threatening, and where other, safer drug alternatives were available, our doctors disregarded their Hippocratic Oath.  THE HIPPOCRATIC OATH IS IMPORTANT.  We need to scream at our doctors, nurses, pharmacists, etc. until they start following their Hippocratic Oath again.  It’s the moral basis of our medical system, or at least it should be, and it’s really, really important.

Another basis of our medical system that has been lost is INFORMED CONSENT.  It’s also quite important.  When drugs have dangerous, and sometimes permanent, side effects, as is the case with fluoroquinolones, it’s really, really important that informed consent be obtained before the drug is prescribed.  This rarely happens.  Patients are prescribed what they assume is a benign antibiotic.  They probably don’t even think about the side effects.  It’s an antibiotic, people take antibiotics all the time.  How could an antibiotic be harmful?  The sheet listing the side effects is included in the baggie when the prescription is filled, but the pharmacist doesn’t take the time to go over the side effects.  No one ever says, “This can damage your CENTRAL NERVOUS SYSTEM” or “This may permanently weaken all of the connective tissues in your body to the point where you become bed-ridden” or any number of warnings that can describe the horror of fluoroquinolone toxicity.  It is really important that a protocol be established when prescribing and filling prescriptions for fluoroquinolones.  All gatekeepers, at all steps in the process, should be informing patients of the possible consequences of taking these drugs.  To not obtain real informed consent is WRONG.

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It is important for side effects to be relevant.  It is important that doctors, nurses, pharmacists and especially patients know the RISKS associated with every drug.  Everyone involved in the system, including the patients, are guilty of disregarding warnings of side-effects.  Warnings are disregarded because they’re seen as arbitrary and unimportant.  They’re seen as arbitrary and unimportant because the FDA puts one-size-fits-all rules around what is said on drug packaging instead of adequately communicating REAL RISKS of each and every drug to doctors and patients alike.  If warnings are seen as arbitrary, if they’re not seen as real, they will not be heeded and people will get hurt.  It’s important that proper information be given to patients and that they know the risks associated with every drug that we put into our body.

The system let us down.  It’s important that we try to fix it so that it doesn’t let other people down.

Sometimes I wonder if fighting Bayer and Johnson & Johnson is possible.  I know that it is the right thing for me to do, but I get tired.  Fear takes over.  I wonder if I’m getting stuck in the past and stuck in a time in my life when I was sick, when I’m largely recovered, and that’s not a healthy thing to do.  Winning is borderline unimaginable.  Bayer and Johnson & Johnson are huge, powerful and have resources beyond my comprehension.  But then I think, who am I not to fight?  Not that many people see that there are some REALLY BIG PROBLEMS in the medical system, but I do, because of what I’ve been through, so I should take this (unwanted) gift of insight and use it – to scream.  Injustice is being done, people are being hurt and the system needs to be fixed.  So I will scream.  I will find a way to scream.  This blog is a start (maybe it’ll go viral – you never know (yes, that means share this post)), but bigger, better, louder ways of screaming are possible and I will do my best to find them.  BECAUSE BABIES ARE BEING POISONED.  Until they stop giving Cipro ear drops to 1-year-olds, I will scream – because it’s IMPORTANT to keep babies from being poisoned.  The fact that that needs to be said means that we live in a crazy world.  Let’s try to make it a little more sane.

 

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