Tag Archives: Adverse effects of fluoroquinolones

Is Fluoroquinolone Toxicity “Real?”

What is required for fluoroquinolone toxicity to be “real?”

Most of the symptoms of fluoroquinolone toxicity are listed on the warning labels.

Tendinitis? Yup, listed on the warning label. Muscle weakness? Yup, that’s there too. Cardiovascular collapse, loss of consciousness, tingling, pharyngeal or facial edema, dyspnea, urticaria, and itching? They’re right there on the warning label. Liver failure is there too – that’s what “hepatic failure” means. “Convulsions, increased intracranial pressure (including pseudotumor cerebri), and toxic psychosis have been reported in patients receiving fluoroquinolones, including ciprofloxacin.” Serious central nervous system effects like, “dizziness, confusion, tremors, hallucinations, depression, and, rarely, psychotic reactions have progressed to suicidal ideations/thoughts and self-injurious behavior such as attempted or completed suicide” are also listed on the warning labels. Permanent peripheral neuropathy is listed too. So are musculoskeletal disorders—though the warning label only notes that those happen in pediatric patients—kids. Prolongation of the QT interval, renal impairment, phototoxicity and diarrhea are also listed.

Do the warning labels leave some symptoms of fluoroquinolone toxicity out? Sure. Even the FDA acknowledges that, “While most of the individual AEs (adverse effects) that exist within FQAD (fluoroquinolone associated disability) are currently described in fluoroquinolone labeling, the particular constellation of symptoms across organ systems is not.” The warning labels are a good place to start though.

If someone takes a drug, then develops side-effects that are listed on the drug warning label, it’s pretty reasonable to think that what they’re experiencing is an effect of the drug. It’s not only reasonable, it’s probable.

If thousands of people experience similar adverse effects after taking a drug, those adverse effects are likely caused by the drug.

Thousands of anecdotes certainly help to build a case, but they are still anecdotes, so scientific experimentation is needed to show that a drug is as damaging and dangerous as people claim it to be.

There are more than 200 peer-reviewed journal articles about fluoroquinolones in the Research section of the Links & Resources page on this site. There is PLENTY of evidence that fluoroquinolones do a massive amount of damage to the human body.

There is PLENTY of evidence that fluoroquinolones damage mitochondria, increase ROS, deplete antioxidants, deplete iron, deplete magnesium, damage the microbiome, downgrade GABA, are endocrine disrupters, cause lysosomal disorders, form poisonous metabolites in the liver, activate mast cells and release histamine, AND MORE.

Can any one of those things cause a multi-symptom illness? Yes, of course they can. And fluoroquinolones DO cause multi-symptom, often chronic, illness.

Despite all that, there is not a diagnostic code for fluoroquinolone toxicity, and fluoroquinolone toxicity is not taught in medical school. Many doctors do not recognize fluoroquinolone toxicity when they have a patient who is dealing with it. (Though that is changing—more and more doctors are recognizing fluoroquinolone toxicity, and that is a very good thing.) And, despite all the damage that fluoroquinolones do to cells, there is no test that shows fluoroquinolone toxicity.

A diagnostic code and a test will likely be required for some people to believe that fluoroquinolone toxicity is real. We should fight for those things, because they’re important in getting the problem recognized and the solution sought.

Even without the diagnostic code or adequate test, fluoroquinolone toxicity IS REAL. It is acknowledged in FDA documents and backed up by hundreds of peer-reviewed articles. If someone chooses to ignore that evidence, well, they’re operating on faith in their notions of infallible doctors, not the real, scientific evidence that shows the damage that fluoroquinolones do to cells.

Regardless of what anyone thinks, your pain and your experience are real. I know that it hurts when people assert that your pain isn’t real, or that you’re imagining what you know to be true. It sucks, to say the least. But you know your body, and you know what happened to you. Your truth, and your experience, matter. Other people’s beliefs about your condition don’t.

 

 

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Progress Gained in Fluoroquinolone Toxicity Awareness

A lot of awareness of fluoroquinolone toxicity has been gained in the last few years.  In 2011, when I got floxed, the biggest facebook support group for “floxies” had about 600 members, news stories about fluoroquinolone toxicity were few and far between, and people seemed to be reluctant to share information about fluoroquinolones on their social media accounts. Today, the biggest facebook support group for floxies has almost 4,000 members (and many people have come and gone, so there have been more than 3,400 people who are aware enough of fluoroquinolone toxicity to join the group), news reports about the dangers of fluoroquinolones seem to come out on a weekly basis, and people are screaming about the dangers of fluoroquinolones in every way they can – through their social media accounts, telling their personal stories on web sites, commenting on news stories, and through talking to their families, friends, doctors and anyone else who will listen to them.

We’re making progress. We’re getting louder and stronger.

Even the FDA, the slow-moving behemoth that it is, has made some movement toward acknowledging the dangers of fluoroquinolones. In 2013 the warning label for fluoroquinolones was updated to note that PERMANENT peripheral neuropathy is a possible adverse effect of fluoroquinolones. The FDA stated that this change to the warning label was because of a review of AERS (Adverse Event Reporting System) data that found that many people were reporting disabling peripheral neuropathy as an effect of fluoroquinolones. AERS reports are patient reports. The FDA is listening to our screams.

The warning label change prompted a slew of lawsuits against Bayer (the maker of Cipro and Avelox) and Johnson & Johnson (maker of Levaquin), that hopefully will give some people justice and compensation for the harm that fluoroquinolones have done to them. Just having the door opened for justice is a step in the right direction – it’s progress.

In September, 2014 Dr. Charles Bennett filed two Citizen’s Petitions with the FDA asking them to change the fluoroquinolone warning labels to note “mitochondrial toxicity” and “psychiatric adverse effects.” The FDA’s response to those petitions is still pending, but the petitions themselves are valuable, both in that they are communications with the FDA, and that they give victims of fluoroquinolones credibility.

More than 60 news stories about the dangers of fluoroquinolones have aired in the last year. Each of these news stories was made possible by people reaching out to the news media. They wouldn’t have happened without people advocating for themselves and speaking up. With each news story, the word spreads about the dangers of fluoroquinolones, and the more people are aware of fluoroquinolone toxicity. With awareness of the dangers of fluoroquinolones comes avoidance of them, and that’s certainly progress.

One of the most influential news-stories about fluoroquinolones was “Local woman says popular antibiotic killed her husband” which aired on WSB-TV Atlanta. It had more than 135,000 social media shares, and Levaquin prescriptions in the Atlanta area dropped dramatically after it aired. It not only successfully spread the word about the devastating effects of fluoroquinolones, it changed prescription rates for fluoroquinolones. That’s huge! (Though, of course, it is horrible that Chris Dannelly lost his life. My eternal condolences to his family.)

A lot of progress in awareness of fluoroquinolone toxicity has been made through social media. When I first got floxed, people didn’t mention fluoroquinolone toxicity on their social media pages. There seemed to be a lot of silence, and even shame, around it. Now there are people who share information about the dangers of fluoroquinolones on their social media accounts regularly. With every “share” or “like” people are reached and progress toward awareness is made. Every little step rolls the ball in the right direction and gives us momentum. A huge THANK YOU to everyone who shares information about fluoroquinolone toxicity with their social network!

While it is sad to see the devastation that fluoroquinolones bring to every floxed individual, it is nice to see that the awareness of fluoroquinolone toxicity is reaching people, and that they are reaching out for support on facebook. The community of floxies helping and supporting each other in The Fluoroquinolone Toxicity Group has grown significantly. Each person who connects their health problems to fluoroquinolones is a step toward general awareness of fluoroquinolone toxicity. Everyone who joins The Fluoroquinolone Toxicity Group realizes the dangers of fluoroquinolones for themselves and their loved ones. Of course, I hate to hear of people getting hurt by fluoroquinolones, but with each new member to the group, awareness and support are gained.

Even this site has gained a lot of momentum. When it launched in 2013, Floxie Hope was getting about 5,000 visitors per month (which I was THRILLED with). Now 30,000+ visitors per month view Floxie Hope. I’m proud to be part of the movement toward awareness of the devastation that fluoroquinolones bring, and I hope to be part of movements to study fluoroquinolones and limit their use.

All of us who are telling our stories, supporting each other, and sharing information about fluoroquinolone toxicity are making progress. Thank you to all of you!

Admittedly, we have a long way to go before paradigms about the safety of fluoroquinolones shift in the general population.  There are still some doctors who are giving FQs out like candy.  There are still people who deny adverse effects of fluoroquinolones that are listed on the warning labels.  There is still a lot of research that needs to be done.  But progress has been made in the last year, and this post is to celebrate that progress.  Good job, friends!  Keep going!

 

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Off Label FQ Use – WTF are they thinking???

It has come to my attention that (some) doctors are prescribing Cipro to patients who are having adverse reactions to other drugs.

I am so flabbergasted by this that I’m close to speechless.

WHY would anyone think that it is appropriate to give a fluoroquinolone to someone who is experiencing an adverse reaction to a drug?!  NOWHERE in the literature for fluoroquinolones does it say that they should be used to treat adverse drug reactions.  It makes no sense.

I thoroughly disagree with fluoroquinolones being used as antibiotics in cases where there are other, safer, remedies that can be used.  They are too dangerous and it is a violation of the oath to “do no harm” to prescribe fluoroquinolones when there are safer antibiotics available.   But at least fluoroquinolones do kill bacteria.  Most doctors aren’t aware of how dangerous fluoroquinolones are, and they use them for the purposes for which they are indicated – urinary tract infections, prostatitis, sinusitis, typhoid, anthrax, and other bacterial infections.  There are even some articles that indicates that fluoroquinolones can be used as chemotherapeutic agents to kill cancer cells.  But there is NO REASON to think that they should be given to people who are experiencing adverse drug reactions.  It’s insane and it’s dangerous.  What in the world are these doctors thinking?!

Why would any doctor who has taken the Hippocratic Oath prescribe a drug that has a 43 PAGE warning label and a black box warning, for purposes other than those for which it is proven to be effective?  Why would a doctor who has taken a pharmacology class think that it is okay to give a topoisomerase interrupter to someone who doesn’t even have an infection (or cancer – topoisomerase interrupters are really only appropriate for use to treat cancer)?  Why are they ignoring the serious and severe adverse effects that are listed on the warning label?  Why are they handing out Cipro like it is candy?  Why are they giving drugs that deplete liver detoxification enzymes to people who are having an adverse reaction to another drug?  WHY?

Here is a video from a guy (a Veteran) who was given a prescription for Cipro after he went to the VA doctor’s office with an adverse reaction to Finasteride:

Another case is illustrated in this comment, which, frankly, broke my heart:

“The baby reacted badly to each vaccination, screaming throughout the night each time, and the doctor prescribed her cipro drops after each one. She can’t taste, and has many delays in speech, reading, learning, and physical development, even though she started off being very advanced in certain ways.”

WHY?

Why would a child (A CHILD) be given Cipro after she has had an adverse reaction to a vaccine?  To completely shut down her liver?  To shut down her kidneys?  To destroy her mitochondria?  To obliterate her microbiome?  To make sure that the microbial protection that her microbiome should give her blood-brain barrier is completely destroyed and the aluminum in the vaccines gets deep in there? (See post-script for sources.)

What kind of masochistic doctor does that to a child?

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There seems to be a strange and disturbing trend to give people Cipro for no justifiable reason – just ‘cause.  Bayer donated (aren’t they sweet?) 3.7 million Euros worth of Cipro to the countries of West Africa to help them deal with Ebola.  Ummm….. Ebola is a VIRUS.  In case it needs to be said, antibiotics do NOTHING to treat viral infections.  In fact, they can make viral infections worse by killing off the good bacteria in the microbiome that are fighting the virus.  If the doctors in West Africa are giving the people who are fighting Ebola Cipro, they are doing them no good.  Cipro can do plenty of harm too.  The warnings on the 43 page warning label aren’t a joke, and they’re not temporary.

The Western Medicine doctors in West Africa wonder why people don’t trust them and would rather go to a local Shaman.  Shoot, I’d rather go to a Shaman than be needlessly pumped full of Cipro.  The Cipro would definitely kill me, at least I’d have a chance of survival with the Shaman.

We’re in this bizarro world of Orwellian notions of drug safety.  The most dangerous drugs, like fluoroquinolones, are pushed as having “an excellent record of safety and efficacy.”  Just ignore the permanent peripheral neuropathy, severe psychiatric disturbances, mitochondrial dysfunction, cellular mineral chelation, antioxidant depletion, microbiome obliteration, etc. that they cause.  Those symptoms can happen weeks, months, or even years after administration of the drug, so it is pushed that fluoroquinolones are “safe” and that the multi-symptom, chronic illnesses that result from them are a “coincidence.”

Doctors are throwing Cipro at people who they don’t know how to deal with.  If you or your boyfriend/father/son is having bizarre psychiatric problems after taking Finasteride, or your child is reacting badly to a vaccine, they’ll be given Cipro.

Why?

I cannot for the life of me understand why.

Post Script – 

The findings published in Science Translational Medicine in the 2014 article, “The gut microbiota influences blood-brain barrier permeability in mice,” are fascinating and likely quite consequential.  The scientists/researchers found that gut microbiota influences blood brain barrier permeability.  Mice with a compromised (or nonexistent) microbiome showed more permeability in their blood brain barrier than mice with normal/healthy microbiomes.  Blood brain barrier permeability means that unwanted molecules and cells from the bloodstream can enter the brain.  Disturbing our microbiome with antibiotics, especially powerful chemotherapeutic antibiotics like fluoroquinolones, is quite consequential to the brain.

Here are some articles about the study:

Science Translational Medicine, “The gut microbiota influences blood-brain barrier permeability in mice

Translational Microbiome Research Forum, “Gut Microbiota Influences Blood Brain Barrier Permeability

NeuroScienceNews.com, “Gut Microbiota Influences Blood Brain Barrier Permeability

The Scientist, “Mother’s Microbes Protect Baby’s Brain: Bacteria in the gut of a pregnant mouse strengthen the blood-brain barrier of her developing fetus.

Karolinska Institute, “Gut microbiota influences blood-brain barrier permeability

 

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Don’t take Cipro, Levaquin or Avelox if….

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Post on Hormones Matter –

http://www.hormonesmatter.com/dont-take-cipro-levaquin-avelox-fluoroquinolone-toxicity/

In an ideal world, fluoroquinolones would be reserved for use in life-or-death situations. Until then, and until medicine can be completely customized and individualized, these groups of people should avoid fluoroquinolones:

1.  People who have reacted badly to a fluoroquinolone in the past.

2.  Athletes.

3.  People on steroids (corticosteroids).

4.  People who need to take NSAIDs regularly.

5.  Immunocompromised Individuals.

6.  People with Mitochondrial Dysfunction.

7.  Children.

 

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Forgetting the Pain of Floxing

Getting floxed was the most difficult thing that I have ever gone through.  Getting sick, and all of the struggles that went along with it, was difficult physically, mentally, emotionally and spiritually.  To have my body suddenly fall apart was scary.  To have my mind fall apart along with my body, was terrifying.  Getting floxed tore down parts of me that I thought were solid.  It took what I thought were my greatest strengths, my physical and mental capabilities, and made them my weaknesses.  I had to find strength in a part of myself that I previously didn’t know existed, my spirit, in order to make it through.  Through trial and error, perseverance, dumb luck, support and probably some other factors, I made it.  I have recovered.

Getting floxed was also the most traumatizing thing that I have ever experienced.  It took me longer to get through the PTSD and shock of getting sick/poisoned than it took me to get through the physical or mental deficiencies.  The emotional turmoil involved in getting poisoned by a perfectly legal, prescription antibiotic was, well, traumatizing.  But I think that I have recovered from the trauma as well.

As life has gone on, as it has returned to normal, as I have gained my capabilities back and gotten over the pain and shock, I have started to forget what it was like to be sick.  I have forgotten the pain.  I have forgotten the desperation.  I am forgetting the fear.  Even the anger is leaving me.

It’s odd to forget.  It’s odd to not remember a big chunk of my life (from December, 2011 through August-ish, 2013).  It’s odd that something that defined my life is leaving my consciousness.  It’s odd that I am forgetting what helped me and what hurt me.  It’s odd that I am even forgetting the trauma, because it isn’t traumatic for me anymore.  I have recovered and it’s just… gone.

It went away.  All of it.  Even the memories.

It’s perplexing to lose the memories of my floxing.  I feel like I need those memories in order to do what I do – write about fluoroquinolone toxicity, advocate for change in how fluoroquinolones are thought about and administered, empathize and offer advice to those who are struggling, etc.  But the memories are fading.  They’re leaving.

It’s healthy to forget, I’m sure.  I’m sure that it’s best for my mind, spirit and even body to forget the pain, suffering and fear.  It’s best to let it go.

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But it is odd to lose my memories.  Of course I don’t miss the pain, fear or anger.  But I’m a little worried that in losing my memories I will lose my passion, my drive and my purpose.  Advocating for change in the policies surrounding fluoroquinolones is important, and I intend to keep doing it.  As time goes on and my memories fade, I fear that I will lose focus and that I will forget my passion.

I wish you all healing.  I wish you all hope.  I wish you all forgetting.  May you forget the pain.  May you forget the sickness.  May you forget the fear.   May you forget the anger.

But I encourage you to not forget the fight.  It’s a good and worthy fight.  Though I may forget how it felt to go through getting floxed myself, I’ll try to remember that there is nothing that is okay about other people going through it.  I will keep in mind that people are suffering needlessly – and that’s wrong.  I will keep in mind that these drugs are being given to innocent children and that they are being hurt.  It’s horrifying and it needs to stop.  I’ll keep fighting.  And I’ll keep reminding myself about why I fight through listening to your stories.

As you recover, when you see that light at the end of the tunnel and you know that a full recovery is on the horizon, please write down your story and, if you want to share it, send it to me to publish on Floxie Hope.  If you don’t write it down, you will forget it.  That’s not an altogether bad thing, but other people can benefit from your wisdom if you write down your story while it’s still fresh in your mind.

Forgetting the pain and sickness is healthy.  May you get well enough to let your floxing be a distant, faded memory.  The fight is different from the sickness.  You can forget about the sickness while still remaining in the fight.  IMO – it’s excellent to do both.

 

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Bring on 2014 – Happy New Year!

NYE 2013-2014.

HAPPY NEW YEAR!

Congratulations!  You made it through 2013!  For those of you who were sick in 2013, there were probably moments that you didn’t think you’d make it through.  You made it though.  You made it to 2014.  Congratulations and may there be many more years for you to look forward to!

I wish you all hope and healing in the new year!  I have no idea how long your road will be, or if 2014 will be better or worse than 2013 for you, but I sincerely hope that it is better in every possible way.  I hope that it is a year of healing for you.  I hope that your pain subsides.  I hope that you get the support you deserve.  I hope that you either gain back what you have lost due to your illness, or that you come to appreciate what you still have.  I hope that you are able to access the people, methods or techniques that help you to move on from your illness.  I hope that you find peace, healing, love, happiness, patience, hope, etc.

For myself, I haven’t thought of any specific New Year’s resolutions quite yet, but I hope that this picture sums up my 2014:

Always wondered

2013 was an empowering year for me.  I started writing about FQ toxicity in June of 2013.  I truly had no clue that anyone would want to read the things that I wrote, but it turns out that people like what I have to say.  I don’t think that they like what I have to say because it’s pretty or because I’m anyone special (I’m not).  I think that they like what I have to say because what I write about is important.  It’s important that the word get out about the dangers of fluoroquinolones.  It’s important that people stop being hurt by the frivolous and foolish over-use of DNA damaging chemotherapy drugs that are being pushed as “safe” antibiotics.  It’s important that people make the connections between many of the mysterious modern diseases that plague us and fluoroquinolones.  Fibromyalgia, Chronic Fatigue Syndrome, all autoimmune diseases, anxiety, depression, dietary intolerances, autonomic nervous system dysfunction, mitochondrial dysfunction, diabetes, Gulf War Syndrome and even autism can be tied to fluoroquinolones.  These are not little problems.  They are serious concerns and it’s important that they be addressed and fixed.  In bringing attention to the role that fluoroquinolones play in each of these diseases, I’m bringing attention to something important.

It’s quite empowering and, though I’m sure that what I just said sounds egotistical, I am humbled by it.  The over-use of fluoroquinolones is a big problem that leads to multiple levels of other serious problems.  The problems are systemic and difficult to bring attention to, much less solve.   Paradigm shifts and systemic changes are needed in order for meaningful change to come about.

It’s a big task, but someone has to do it.  That someone may as well be me.  It may as well be you too.  Even better, it should be all of us together.

We can do this.  We can make change happen.  We can stop people from getting hurt by fluoroquinolones.  We may not be able to save everyone today or even tomorrow, but we can try.  And in trying, we are doing something.  We are making the world a safer and more just place.

“Trying” can be something little or something big.  It can be handing out cards warning people about FQ toxicity, it can be attending the FQ Awareness Rally in Washington D.C., it can be starting a blog, it can be talking to your friends about what happened to you, it can be filing a lawsuit, it can be enacting legislation, etc., etc.

In 2014, I resolve to DO SOMETHING about fluoroquinolone toxicity.  I hope that change comes about.  But if it doesn’t, well, I have my 2015 resolution set, and I’ll keep trying until people know about the causal links between fluoroquinolones and chronic diseases, until the frivolous over-use of fluoroquinolones is stopped, and until they stop giving these poisonous drugs to children.

If you feel inclined, I hope that you feel empowered enough to do something about fluoroquinolone toxicity in 2014 too.  It will take all of us to bring about change.  We can do it though.  We have to be able to.  No one else will and it’s important.  So, bring on 2014.  Let’s get ‘er done.

 

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Truth Seeker or Conspiracy Theorist? You Decide.

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The disbelief that we face when telling people about our reaction to FQs is frustrating beyond belief. People assume that we’re wrong, or lying, or crazy conspiracy theorists when we tell them that an antibiotic caused our body to go completely hay-wire. We’re not wrong, crazy, lying, etc. The human body is just exceedingly complex and, unfortunately, poorly understood, and the effects of fluoroquinolones on our body are devastating. Here is an essay that I wrote about the topic of being thought of as a conspiracy theorist for shouting about the dangers of FQs. As always, shares are greatly appreciated. Thanks so much for reading it!

Truth Seeker or Conspiracy Theorist, You Decide

 

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