Tag Archives: Adverse effect

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 Fluoroquinolone Toxicity Rare?

I’ve come to hate the word rare. As in, “your reaction is rare,” or “those side-effects are rare,” or “it’s rare for someone to suffer from adverse effects from fluoroquinolones.” It’s such a dismissive thing to say. As if it’s okay for this to happen as long as it’s “rare.” As if it’s okay for a certain number of people to be collateral damage as long as the devastation that they experience is “rare.” As if it’s okay for there not to be any research or resources or justice or answers to questions because the problem is “rare.” As long as what you experience is labeled as “rare,” it doesn’t matter. Your experiences, your pain, your health, stops mattering. You become statistically insignificant.

It’s not a very nice thing to say to people. People who are trying to tell their stories. People who are trying to be heard. People who are trying to get answers, justice and cures. People who have been attacked and who need their pain and suffering to be acknowledged. Telling them that they are insignificant, rare, is just mean.

And is it true? Are adverse effects of fluoroquinolones really rare? How, I wonder, would anyone have a clue? Seeing as there is no recognized diagnosis of (name for) Fluoroquinolone Toxicity Syndrome / Floxing, most people who suffer from it are misdiagnosed. They are either told, as I was, that there is nothing detectable wrong. There was definitely something wrong with me, but “I don’t know” is the most benign wrong answer possible, so I’m thankful for it. Other people who have doctors who are less willing to admit that they don’t know are diagnosed with fibromyalgia, arthritis, chronic lyme disease, leaky gut syndrome, chronic fatigue syndrome, bipolar disorder, depression, anxiety, rheumatoid arthritis, M.S., lupus, sjogren’s disease, or, in children (shudder), autism or autism-like symptoms.  Plenty of people who are floxed end up with one of the diseases listed, and fluoroquinolones may (um did, but that’s a bold assertion when I have no proof) have even caused those diseases to emerge.  (All of the diseases listed are complex diseases with multiple causes – fluoroquinolones are NOT the only cause of them and they are not the only cause of symptoms like those of the diseases listed above.  I’m just saying that sometimes, possibly often, people who are suffering from Fluoroquinolone Toxicity Syndrome are misdiagnosed with those diseases, and for some of the autoimmune diseases, fluoroquinolones may contribute to them.)  So people who should have at least a partial diagnosis of Fluoroquinolone Toxicity Syndrome / Floxing / whatever it ends up being called, end up being put into a different disease category and everyone gets to remain willfully ignorant, thinking that adverse effects from Cipro, Levaquin and Avelox are “rare.”

The fact that adverse effects of fluoroquinolones are often delayed makes the connection between the cause (fluoroquinolone antibiotics) and effect (bomb in body and mind) difficult to see. Patients and doctors alike are failing to make the connection between fluoroquinolones and the symptoms that are the manifestation of an adverse reaction to them.

As far as I know, there has never been a study of fluoroquinolones that takes into account the delayed adverse reaction to them that many people experience. Another thing that I have never seen taken into consideration is the fact that there seems to be a threshold for fluoroquinolone tolerance. Some people react negatively to their first pill, but most people tolerate fluoroquinolones for a while (some people can take 5 pills, some can take 500 pills) then, once their threshold is reached, they have a severe adverse reaction. If neither delayed reactions nor thresholds (nor cumulative effects) are being studied, how in the world would anyone have a clue how often adverse reactions truly occur?

The less noticeable adverse effects of fluoroquinolones, effects like mild insomnia, memory loss, urgency of urination, painless muscle spasms, etc. (a list can be found here – https://floxiehope.com/2013/07/10/warning-signs/ ) can even be mis-attributed to aging, dehydration, etc. Though these effects are mild and nothing compared to the triggering of an autoimmune disease-like reaction like full-on floxing is, they’re still adverse effects and they’re still damage done to people by fluoroquinolones. I doubt that these effects are rare. They probably happen to most people who take fluoroquinolones. But they are rarely reported and rarely connected to fluoroquinolones, and thus, everyone gets to continue to think that adverse reactions are rare.

No one really knows how frequent adverse effects of fluoroquinolones are because no one is looking at the full picture and no one is asking the right questions.

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Of course, I’m a bit biased, but I see adverse effects of fluoroquinolones everywhere. I don’t have a large number of friends – I’m certainly not a “connector” – yet I have 4 friends (not including facebook friends) who have been adversely effected by a fluoroquionlone. I also went out on a date with a guy the other day who was telling me that he had a rash, an irregularly high heartbeat, loss of endurance, an anxiety attack and leaky gut syndrome after taking an antibiotic. I bet you a buck he was floxed.  He didn’t know, his doctor didn’t know, the FDA didn’t know and the pharmaceutical companies didn’t know, so everyone gets to go on thinking that his reaction didn’t happen, and the number of reported adverse reactions remains lower than the number of actual reactions.  A lot of people have been adversely effected by these drugs. Most of them recover, thank God. But suffering from any adverse effects from a drug when there are safe alternatives that will get rid of the infection, is wrong. And it isn’t RARE.

 

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Ciprodex – Poison Marketed to Children

Ciprodex Ear Drops

Ciprodex is an ear drop that is used in children, especially children under the age of 3, the main people who get ear infections, that contains Cipro, a fluoroquinolone antibiotic, and Dexamethasone, a steroid. Let me list the ways in which this is HORRIFYING:

  1. Fluoroquinolones are dangerous drugs. Their adverse effects include DESTRUCTION of all connective tissue throughout the body. This includes tendons, ligaments, fascia and cartilage. Destroying the connective tissue of a growing child is a REALLY BAD IDEA. Fluoroquinolones also adversely effect the nervous systems – central, peripheral, and autonomic nervous systems. Destroying a child’s central nervous system, its BRAIN, is also a REALLY BAD IDEA. A child’s brain is not fully developed and to damage it with chemicals is unconscionable. Fluoroquinolones are so dangerous that many have been removed from the market due to serious adverse reactions and safety concerns. The fluoroquinolones that have been removed from the market include gatifloxacin, repafloxacin, temafloxacin,trovafloxacin and afloxacin. Cipro (ciprofloxacin) may be formulated in a way that makes it slightly less strong, or, if you’re feeling cynical, it may be formulated in a way that adverse effects tend to be delayed, and thus it is not perceived as being as dangerous as other, recalled, fluoroquinolones, but it’s still REALLY DANGEROUS. Hell, it messed me up pretty severely, and I was a strong and healthy 32 year old. I can only imagine what it would do to a child. I shudder at the thought.
  2. Fluoroquinolones should NEVER be co-administered with a steroid. They are contraindicated with steriods. Yet Bayer, in all its glory and brilliance, decided that it would be a good idea to combine a fluoroquinolone and a steroid in a single medication then market it to children. Awesome. Steroids weaken tendons, fluoroquinolones weaken tendons, putting them together is a toxic cocktail. Steroids also intensify the toxicity syndrome that is “Floxing.”
  3. Because Ciprodex is an ear drop, it doesn’t carry the same warnings as orally administered Cipro. I’m sure that a drug that goes into the digestive tract is metabolized differently than a drug that goes into the body via the ear. However, I am also sure that people can be floxed by ear and eye drops because I’ve talked to people who have been poisoned that way. To take the warning labels off of ear and eye drops is absurd. The drugs are still going into the body. Eyes and ears aren’t disconnected from the rest of the body just because they’re not directly connected to the digestive tract. I’m not asking anyone to believe in homeopathy or to go to a holistic physician, but I am saying that it is crazy to think that drugs that go into the ear and/or the eye don’t go into the body. Ears and eyes actually are part of the body, not separate floating entities completely disconnected from the rest of the being. Yet the FDA treats them this way and doesn’t demand the same warning labels on ear and eye drops. So parents are completely uninformed of the dangers of Ciprodex when they administer it to their children.
  4. Again Ciprodex is specifically marketed to children – what is wrong with these people? And what is wrong with the FDA? Children, the most inherently vulnerable people in our society, the people who are depending completely on others to take care of them, are being endangered at the least and permanently damaged at the worst, by pharmaceutical companies and a medical system that isn’t looking out for them. This is disgusting.

Here is the package insert for Ciprodex – http://dailymed.nlm.nih.gov/dailymed/lookup.cfm?setid=0ed518de-4ae1-43d1-84ff-26872d9e6a0f . Some things to note in the insert are:

  1. The amount of Cipro in it is low. This is good. Seriously, thank God.
  2. It is approved for use in patients 6 months of age and older. This is appalling.
  3. CIPRODEX® Otic is contraindicated in patients with a history of hypersensitivity to ciprofloxacin, to other quinolones, or to any of the components in this medication.” So, if your baby starts having seizures, you may want to discontinue use of this drug because it turns out that your child now has a history of hypersensitivity to Cipro. Too bad they don’t mention that an adverse reaction isn’t reversible. And how, other than poisoning their children, are parents supposed to know whether or not their child has a history of hypersensitivity to these drugs?
  4. Serious acute hypersensitivity reactions may require immediate emergency treatment.” This implies that there is a treatment. There isn’t. If your child has an adverse reaction to this drug and you take him or her to the emergency room, he or she will likely be pumped full of steroids which will make him or her worse. Then the child will have connective tissue and nervous system issues for a while, possibly for the rest of his or her life. But sure, tell your doctor immediately if your child experiences a hypersensitive reaction. They won’t be able to do anything about it, but they may realize that they poisoned your child and may avoid doing it again in the future.
  5. If the infection is not improved after one week of treatment, cultures should be obtained to guide further treatment.” Cultures should be obtained before the administration of any antibiotic, period. Fluoroquinolones should not be used as a first line of defense against verified bacteria, period.
  6. The systemic administration of quinolones, including ciprofloxacin at doses much higher than given or absorbed by the otic route, has led to lesions or erosions of the cartilage in weight-bearing joints and other signs of arthropathy in immature animals of various species.” Yup. And I wouldn’t trust that the amount absorbed by the otic route is too small, especially seeing as everyone’s tolerance for fluoroquinolones seems to be different. Some people die after 2 pills, others take 90 before they have a reaction. Besides, the people who are testing these drugs are the ones selling them. Don’t trust the bastards.
  7. Guinea pigs dosed in the middle ear with CIPRODEX® Otic for one month exhibited no drug-related structural or functional changes of the cochlear hair cells and no lesions in the ossicles.” Well, it’s nice to know that their ears looked okay. Could they run though? Could they still find their way through a puzzle (or do whatever cognitive things guinea pigs can do?) How did their brains look? How did their tendons look? You don’t know because you weren’t looking? Oh…. I see.
  8. It is very important to use the ear drops for as long as the doctor has instructed, even if the symptoms improve.” It is very important to stop using fluoroquinolones as soon as possible after you start having an adverse reaction. Even after stopping administration of them, the adverse reaction can continue. Since we’re talking about children, it’s really important that you stop giving your children drugs that are poisoning them. Discontinue use immediately.
  9. Specific drug interaction studies have not been conducted with CIPRODEX® Otic.” I’ll tell you that NSAIDs and steroids trigger adverse reactions.
  10. Ciprofloxacin and corticosteroids, as a class, appear in (breast) milk following oral administration.” This is bad.
  11. No clinically relevant changes in hearing function were observed in 69 pediatric patients (age 4 to 12 years) treated with CIPRODEX® Otic and tested for audiometric parameters.” Your child will still be able to hear. That’s good. He or she may even be able to hear constant ringing (tinnitus), a common effect of fluoroquinolone toxicity. That’s bad.
  12. All of the adverse events listed are things involving the ear. Of course, adverse effects on the ear should be noted when studying ear drops, but the rest of the subject should also be noted. Of the 937 babies poisoned by Ciprodex, how many suffered from subsequent tendon pain? How many had cartilage, tendons, ligaments or fascia that were mal-formed? How many of these children subsequently read at a normal level? How many of these children displayed symptoms of autism? Could they run? Could the jump? Could they think? Could they concentrate? Did they have GI problems? ALL of these things are problems associated with fluoroquinolone toxicity, and if none of these questions were asked, then the researchers were LOOKING AT THE WRONG THINGS. THEY WERE ASKING THE WRONG QUESTIONS AND THE SAFETY AND EFFICACY OF THIS DRUG HAS NOT BEEN ESTABLISHED PROPERLY.

Even if all of the 937 children who were part of this study (side-note – don’t put your children in drug studies, just don’t) were fine, (and I doubt that is the case), effects of fluoroquinolones appear to be cumulative. So, even if these children didn’t react to these drugs the first time they were administered, they may react horribly to them when they get a fluoroquinolone in the future. A ticking time-bomb in their little body has been triggered, and it may get set off by future fluoroquinolone use, steroid use, NSAID use, or maybe even vaccines. (I’m not trying to vilify vaccines any more than I’m trying to vilify ibuprofen, the culprit is the fluoroquinolone, not the triggering toxin.)

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Ciprodex and plain Cipro ear drops are given to children constantly. A very good friend of mine brought her then 9-month old daughter to an emergency services clinic with a suspected ear infection. The doctor never cultured the bacteria in her ear, he simply prescribed her some Cipro ear drops. Thankfully I was with my friend when she went to pick up the drops and she never filled the prescription (because I flipped out). The infection went away on its own.

The following was recently posted in a Facebook group that I belong to – “My 20 month old grandson is visiting from GA. He had a follow-up appointment at Vanderbilt for his ear tubes. The physician prescribed Ciprodex Otic Suspension for an ear infection. This is a combination of Cipro and corticosterod given via the ear. The insert does not disclose all the potential side effects. The insert states there are other potential risk and if you have concerns get additional information from your health care provider (which we know how that goes). After watching my wife go from a normal life to a life with disabilities…..I am concerned. In my personal research, children are at high risk of floxing. Does anyone know of floxing via the ear drop forms of quinolone antibiotics?”

Children are being given this poison every day. A child has probably been given a dose of Ciprodex in the amount of time that it took you to read this post. I hope and pray that they are okay.  

 

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Warning Signs of Fluoroquinolone Toxicity

Almost every time I mention how Cipro messed me up, I get the response, “Oh yeah, I’ve taken that – it doesn’t affect me.”  To which I respond, “I took it several times before I reacted to it too. My body went completely hay-wire the second time I took Cipro. Don’t take it again.”

Adverse reactions to fluoroquinolones aren’t allergic reactions, they’re something else. The pathology of adverse reactions to fluoroquinolones is unknown – to anyone (or, if someone knows, they’re not publishing research papers about it). My guesses to the pathology can be found at https://floxiehope.com/2013/06/20/what-is-fluoroquinolone-toxicity/.

Unlike allergic reactions, adverse reactions to fluoroquinolones often occur long after the fluoroquinolone use has stopped. Antihistamines do nothing to stop an adverse reaction to a fluoroquinolone (though they may be able to help with some of the inflammation symptoms and they don’t seem to hurt most Floxies).

Though some people react to their first dose of a fluoroquinolone, many don’t, which leads them to falsely believe that these drugs are safe and that they won’t react to them in the future. Unfortunately, an adverse reaction to a fluoroquinolone can occur even if (maybe especially if – because there is (anecdotal) evidence that fluoroquinolones accumulate in the body and that there is a “tipping point” at which the body overloads) they have been taken with no adverse reaction in the past.

Looking back, I had some of these warning signs after I took Cipro the first time, in 2010. My eyelid twitched and I developed strange, but passing, abdominal cramping.  I experienced a “weak bladder” that I attributed to genetics and age. I had itchy legs at times and just thought it was dry skin. I didn’t connect any of these things to the prescription antibiotics that I took to treat a urinary tract infection.

If I had connected those symptoms to the fluoroquinolones, I may have been able to avoid taking Cipro again, and I may have avoided the pain and suffering that I went through starting in December, 2011.  (https://floxiehope.com/lisas-story/). I hope that this list of minor symptoms serves as a warning to you.  Please don’t take any fluoroquinolone antibiotics no matter what, but especially if you are experiencing any of the following, heed your body’s warnings and stay away from these drugs!

What FQ can do (HINTS AND CLUES THAT MIGHT SAVE YOUR LIFE)

Perhaps you have taken quinolones in the past and you think that they worked well and that you did not react negatively to them. Check the following subtle symptoms of the beginning stages of a quinolone intoxication from an earlier treatment and the normal interpretations that people make of them.

* You had a strange bout of tendinitis, for instance in the outer tip of the hip, normally diagnosed as trochanteric bursitis caused by tight belts or resting on you side at night. The same applies to other areas of the body, like the elbow (epicondylitis) diagnosed as an overuse of your tennis racquet or gardening practices, but you remember that you had never had it before.

* It takes you longer to recover after exercise. It is not alarming and you have not paid much attention to it.

* You sleep worse than before; it seems normal as you have a lot of pressure at work.

* From time to time you have some small throbbing pains in different parts of the body. They last only for a few seconds, so there is nothing to worry about it.

* It is strange- but you have occasional twitching in an eyelid, or any other part of the body. It is not painful.

* Some nights you feel some mild itching migrating along your body. One brief itch here, and another there. It is more intense in the scrotum or groin. Instead of identifying it as a peripheral neuropathy, you conclude that your clothes, your perspiration or the new brand of soap that is more irritating must be causing it.

* You feel some stiffness, and your range of movement is not as full as before, especially in one or both legs, but it is normal because you are getting older.

* You do not tolerate coffee as well as before. Now you have to reduce the amount of coffee that you used to drink.

* Your memory is not as good as it used to be. The cause may be too many things to think about and too much stress. And you are no longer a young person.

* There is an urge to urinate when the bladder is partially full. When you feel the need to urinate you have to rush for the toilet. Most urologists think that it is due to a dysfunction associated with a benign enlarged prostate but in reality it is a neurological deficit caused by the prescriptions of quinolones that they gave you.

* You cannot flex fully, or strongly, your big toe (one or both), or sustain the flexion for more than a few seconds. This is an indication that your large nerves (anterior tibialis) have started to fail due to the toxicity. This sign is a strong warning that your body will not tolerate more quinolones.

* Sometimes, you have nightmares while falling asleep that scare you. How strange you think. They are toxic panic attacks that reflect toxic damage to your brain.

If you have experienced some of these symptoms since you took your first quinolone, perhaps you have reached your first threshold of tolerance, that -once surpassed- can result in the destruction of your life soon thereafter if you take more quinolones.