Tag Archives: Cipro side effects

Floxie Hope Podcast Episode 18 – Clara

I had the pleasure of interviewing Clara for episode 18 of The Floxie Hope Podcast.

Please check it out!

http://www.floxiehopepodcast.com/episode-018-clara/

https://itunes.apple.com/us/podcast/floxie-hope-podcast/id945226010

You can download all episodes of The Floxie Hope Podcast through any podcatcher app that connects to iTunes.

In this episode of The Floxie Hope Podcast Clara goes over her fluoroquinolone toxicity symptoms, as well as some things that have helped her. She gives wonderful insight and advice!

After taking Cipro, Clara’s toxicity symptoms included:

  • Nausea
  • Loss of appetite
  • Insomnia
  • Loose teeth
  • Bleeding gums
  • Getting sick easily / suppressed immune system
  • Anxiety
  • Depression
  • Fatigue
  • Brain fog
  • And more

Clara has improved greatly with the assistance of a naturopathic doctor who focuses on balancing her hormones. She has also benefitted from an anti-candida diet, and several supplements. Please listen to the podcast for more information about her journey.

Thank you so much for being on the podcast, Clara! Your journey is inspirational and valuable!

 

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Letter from Bayer to Doctors Regarding Cipro and Avelox

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The above letter, from Bayer to health care professionals reads:

August 22, 2016

IMPORTANT DRUG WARNING

Subject: Important Changes in the Avelox (moxifloxacin hydrochloride) and Cipro (ciprofloxacin) Complete Prescribing Information – New Limitations of Use and Safety Information for Fluoroquinolones

Dear Health Care Professional:

Bayer HealthCare Inc. and Merck & Co., Inc. would like to inform you of imprtant changes to the prescribing information for fluoroquinolone antibiotics for systemic use in the United States, including Avelox (moxifloxacin hydrochloride) and Cipro (ciprofloxacin).

Limitation of Use and Safety Information for Fluoroquinolone Drugs

To communicate important safety information for fluoroquinolone antibiotics, the U.S. Food and Drug Administration (FDA) has requested that all license holders of these products, including Bayer for Avelox and Cipro, implement a class label change.

These labeling changes provide for revisions to the Indications and Usage section of the package insert to include a new limitation of use statement for acute bacterial sinusitis, uncomplicated urinary tract infections, acute uncomplicated cystitis, and acute bacterial exacerbation of chronic bronchitis, to reserve systemic fluoroquinolones for treatment in patients who have no alternative treatment options. In addition to the Boxed Warning, Warnings and Precautions, and Information for Patients sections of the package insert and the Medication Guide have been revised to include information regarding the risk of disabling and potentially irreversible serious adverse reactions of tendinitis and tendon rupture, peripheral neuropathy, and central nervous system effects that can occur together in the same patient.

The labels of fluoroquinolones already had a Boxed Warning for tendinitis, tendon rupture, and worsening myasthenia gravis. The labels also included warnings about the risks of peripheral neuropathy and central nervous system effects. Other serious risks associated with fluoroquinolones are described in the labels, such as cardiac, dermatologic, and hypersensitivity adverse reactions. This information about the risk of disabling and potentially irreversible serious adverse reactions is based on the FDA’s review of postmarketing adverse event reports from the FDA Adverse Event Reporting System (FAERS). This safety information was discussed at a November 5, 2015 joint meeting of the Antimicrobial Drugs Advisory Committee and the Drug Safety and Risk Management Advisory Committee.

Prescriber Action:

Health care professionals should not prescribe systemic fluoroquinolones to patients who have other treatment options for acute bacterial sinusitis, acute bacterial exacerbation of chronic bronchitis, acute uncomplicated cystitis, and uncomplicated urinary tract infections. Health care professionals should encourage patients to read the Medication Guide that describes the safety issues associated with fluoroquinolones. The Medication Guide is required to be given to the patient with each fluoroquinolone prescription. Stop fluoroquinolone treatment immediately if a patient reports serious side effects, and switch to a non-fluoroquinolone antibacterial drug to complete the patient’s treatment course.

Reporting Adverse Events:

Health care professionals are encouraged to report adverse events to FDA’s MedWatch reporting system by visiting www.fda.gov/medwatch or calling 1-800-FDA-1088.

If you wish to request further information for AVELOX, please contact Merck National Service Center at 1-800-526-4099. If you wish to request further information for CIPRO, please contact Bayer Service Center at 1-888-842-2937.

Please refer to the accompanying Important Information about AVELOX and CIPRO for complete indication and other important risks. Please also see the enclosed Prescribing Information, including BOXED WARNINGS and Medication guide for AVELOX and CIPRO.

Bayer HealthCare is the license holder for AVELOX and CIPRO. Under terms of a marketing agreement, Merck markets AVELOX in the United States.

Sincerely,

Dario F. Mirski, M.D.

Senior Vice President and Head Medical Affairs Americas

Bayer HealthCare Pharmaceuticals, Inc.

Enclosures: AVELOX and CIPRO Full Prescribing Information

 

The Avelox and Cipro prescribing information can be found HERE and HERE.

 

I’m honestly feeling speechless right now–I have no idea how to respond to this. The letter speaks for itself. I never thought I would see the words, “Health care professionals should not prescribe systemic fluoroquinolones to patients who have other treatment options for acute bacterial sinusitis, acute bacterial exacerbation of chronic bronchitis, acute uncomplicated cystitis, and uncomplicated urinary tract infections,” or that doctors and patients alike should be warned of “disabling and potentially irreversible serious adverse reactions” of fluoroquinolones, or that, “the risk of disabling and potentially irreversible serious adverse reactions of tendinitis and tendon rupture, peripheral neuropathy, and central nervous system effects that can occur together in the same patient,” from Bayer. But, there it is, on Bayer letterhead–a letter to health care professionals regarding the real, serious, often permanent risks of fluoroquinolones.

I hope that this letter is being distributed far and wide, and that it reaches every doctor, P.A., nurse, and other medical provider in the country.

I hope that Johnson & Johnson sends out a similar letter regarding Levaquin (levofloxacin).

I hope that doctors heed these warnings, and stop prescribing fluoroquinolones outside of life-threatening situations.

I hope that these letters do something other than mitigate the risks and losses that Bayer anticipates from lawsuits having to do with the updated Cipro and Avelox warning labels.

I hope that some of the motivation for this letter is Bayer wanting to do the right thing and warn patients and health care providers alike about the dangerous side-effects of their drugs.

I hope that we in the “floxie” community can celebrate this. I see this letter as a very big deal. When I started this site in 2013, I didn’t think that I would ever see a letter like this. It, along with the warning label changes that prompted it, should be celebrated.

 

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Meditation Retreat

I spent last weekend at the Shambhala Mountain Center doing a meditation retreat. It was a lovely get-away and I recommend it to anyone who is interested in that sort of thing.

As those who have read my story know, meditation was a key part of my healing process. Meditation helped me to heal from both the mental and physical aspects of fluoroquinolone toxicity. It helped to relieve my anxiety, and stopping the cycle of anxiety was necessary for me to heal. When I meditate my digestion is better, and I can even feel my GI tract operate more efficiently. (Maybe that’s just a feeling and not objective reality, but it is possible that meditation is helping to tone my vagus nerve and support my autonomic nervous system, and thus actually improving my digestion.) I sleep better when I meditate. My concentration and creativity improve when I meditate. Meditation also helped me to emotionally and spiritually come to terms with getting sick. It helped me recognize my strength and resilience so that I could get through the fluoroquinolone toxicity journey.

Meditation is simultaneously simple and difficult. On the surface, it’s just sitting and being. But when you do it, it’s actually quite difficult. It’s difficult to just BE, without the distractions that are constantly bombarding us.

The retreat that I just returned from focused on loving kindness. We all need loving kindness in our lives. Floxies are especially in need of loving kindness as many things that they value–health, relationships, a pain-free life, sleep, money, etc.–are stolen from them by fluoroquinolone toxicity. When those things disappear (or seem to disappear), it is easy to let shame, fear, anger and meanness build up. Meditation helps to dissipate shame, fear, anger and meanness–and focuses energy back on patience, love, kindness, forgiveness, etc.

My favorite advice from the retreat included:

  • If gentleness and loving kindness don’t work, try more gentleness and loving kindness.
  • Try not to be too focused on / attached to outcomes.
  • There is grace in every moment–even the horrible ones.

They’re important, and valuable, things to remember.

For those who aren’t able to do a retreat away from home, The Urban Monk is offering a free 7-day Reboot Program.

UrbanMonk7DayReboot

According to The Urban Monk, Pedram Shojai,

Over the next 7 days you will:

  • Get more energy from your food and burn fat all day…
  • Generate 10X more power in your body…
  • Create a ‘force field’ shielding you from stress…
  • Learn to stop time and drink from infinity…
  • Detox your body and soothe away anxiety with high quality sleep…
  • Tap into an unlimited source of hidden energy available to each one of us…
  • Gain extra clarity, focus and powerful intention…

Hopefully it can help you to heal physically, mentally, emotionally and spiritually from aspects of fluoroquinolone toxicity too.

I recommend meditation to all my Floxie friends. If you can go on a retreat, please do. If you can do the 7-day Reboot, it’s a great place to start too.

I can’t guarantee healing from meditation, but it’s certainly a good thing to try.

 

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Happy Holidays 2015

Happy Holidays, friends!

For those who celebrate Chanukkah, HAPPY CHANUKKAH!

For those who celebrate Christmas, MERRY CHRISTMAS!

And for those who just want to celebrate the solstice, HAPPY SOLSTICE!

I hope that each of you has a lovely holiday season, filled with love and joy! I hope that any pain you’re experiencing because of FQ toxicity is lessened by the warmth and love of family and friends.

Though I sincerely hope that your holidays are filled with joy and love, I know that the holidays can be difficult for many people–especially those dealing with mysterious, chronic illness (like fluoroquinolone toxicity).

It’s difficult enough to feel like your body is falling apart–it’s even rougher when you’re expected to decorate the house.

It’s difficult enough to have a mysterious illness that most medical professionals don’t understand–it’s even rougher when family members don’t understand.

It’s difficult enough to have lost your job and income because of your illness–it’s even rougher when you feel guilty about not being able to afford presents for your loved ones.

It’s difficult enough to deal with horrible food sensitivities–it’s even rougher when everyone thinks that your food sensitivities are made up and that you should just have a cookie.

It’s difficult enough to deal with fatigue and exhaustion–it’s even rougher when kids need your time, attention and energy.

The holidays can, without a doubt, be a time of struggle for those dealing with multi-symptom, mysterious illnesses like fluoroquinolone toxicity.

I hope that those who are dealing with pain, exhaustion, lack of acknowledgement, financial troubles, grief, loneliness, etc. this holiday season are able to find support, love and healing. If those aren’t possible, I hope that you just are able to get through the season not too terribly scathed.

I hope that the traditions of the season give you comfort and joy. I hope that sitting by a fire warms your bones, and that hot apple cider warms your tummy. I hope that you get and give presents that show you and your loved ones that you are, indeed, loved. I hope that you enjoy some delicious food. I hope that you feel loved and appreciated and that both lessen the pain that you’re experiencing. I hope that you feel grateful for the gifts that remain in your life, because cultivating a feeling of gratitude is healing and good for the soul. I hope that this is a time of healing for your body, mind and spirit.

I truly wish you Happy Holidays, friends!

Huge hugs,

Lisa

Post Script – Tragically, several people have lost their battles with fluoroquinolone toxicity recently. My heart aches for their loved ones. I’m sure that this holiday season will be especially difficult for them, and I am so, so, so sorry for their losses! I hope that they are able to find some hope and healing even though the holidays will, undoubtedly, be difficult. Huge hugs to each of you!

 

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I’m Floxed. Now What?

When I got floxed in 2011 there was less than 1/10th the information about fluoroquinolone toxicity available that there is now. The information available about fluoroquinolone toxicity has increased exponentially over the last few years–and with increasing information comes greater acknowledgement of the problem, empowerment of those going through fluoroquinolone toxicity, and more. I am grateful to everyone (both the scientists and doctors, whose acknowledgment is necessary for change, and also those citizen-scientists and hackers—who are trying to figure out what happened in their bodies) who have contributed their time, expertise, and sleuthing abilities, to gather and synthesize information about fluoroquinolone toxicity to share with others! We truly have come a long way.

The amount of information available about fluoroquinolone toxicity is getting to a point where it is somewhat overwhelming. People are now asking, “Where do I start?” because a starting point isn’t evident.

Here are my suggestions for where to start:

First, read through the recovery stories on www.floxiehope.com. Every healing story is different. The journey through fluoroquinolone toxicity has not been the same for any two people. Even though each story is different, each story has some valuable wisdom and guidance in it. As you’re reading through the stories, I suggest that you write down the healing tips and steps that resonate with you. Try those things one-by-one and see if they work as well for you as they do for the person who recovered from fluoroquinolone toxicity and wrote the story.

Second, the ebook, The Fluoroquinolone Toxicity Solution*, has helped many people through fluoroquinolone toxicity, including Ruth, Cindy, Lizzy and Daniel. It gives particularly good guidance for those looking for supplements to help them to heal from fluoroquinolone toxicity.

You can find support, guidance and advice through many web sites and social-media groups. Comments on the home page of floxiehope.com are typically responded to quickly and there is a wealth of information in the past comments. The Fluoroquinolone Toxicity Group on Facebook is also an excellent resource for support and information that also has years of helpful posts stored on it. (Try not to get overwhelmed by these sites, and if you do get overwhelmed by them, I recommend that you step away from them until you are emotionally able to handle being on them.)

The Floxie Food Guide: Guidelines for Recovery from Fluoroquinolone Toxicity contains information about diets that have helped people through fluoroquinolone toxicity. (Renee was helped immensely by The Wahls Protocol by Dr. Terry Wahls). It also contains guidance for foods to eat to help your mitochondria to heal, your gut microbiome to heal, and also foods that are full of minerals that fluoroquinolones deplete. (Note – You now get The Floxie Food Guide along with the purchase of The Fluoroquinolone Toxicity Solution. Yay! Please click on the link below to get both. Thanks!)

I wrote the following posts to give people basic information about fluoroquinolone toxicity:

Additionally, the post, Articles About Fluoroquinolone Toxicity to Give to Your Doctor, links to several articles about fluoroquinolone toxicity that give a good overview of the condition. More articles can also be found on the Links & Resources page of floxiehope.com (but there are literally hundreds of articles linked to on that page, and the amount of information there can be overwhelming).

There are doctors who have helped people through fluoroquinolone toxicity. If you find a good doctor who you trust to be your guide, he or she can be incredibly valuable. many floxies have been helped by naturopaths and functional medicine doctors. You can find a functional medicine doctor in your area through The Institute for Functional Medicine.

Those are the initial steps I recommend for gathering information on how to recover from fluoroquinolone toxicity. I wish that there were a single cure, or method, or procedure, that helped everyone to recover from fluoroquinolone toxicity. It would be nice if we could say, “take ___ milligrams of ____ per day for ___ days and you will recover,” or “eat _____ and _____ for breakfast and you will recover,” or, “Do _____ exercises and you will recover,” but we can’t say those things because there is no one single cure for fluoroquinolone toxicity. There is, however, recovery from fluoroquinolone toxicity for many people—and there is information that is helpful for your recovery journey throughout this site and other places on the internet.

I hope this post gives you some help with direction.

Please let me know if you need assistance. Hang in there.

 

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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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The Floxie Hope Podcast Episode 8 – Josh Arnold

Josh Arnold Floxie Hope Podcast

For Episode 8 of The Floxie Hope Podcast I had the opportunity to interview Josh Arnold.  Josh is insightful and wise and the lessons he learned from getting floxed are lessons that everyone should hear (they’re in the last quarter of the podcast).

Josh was only 25 when he got floxed by Cipro.  He had taken Levaquin without problems prior to getting floxed.  Two pills of Cipro pushed him over the edge of his tolerance threshold.  Josh went from being athletic and active to barely able to walk his dog after taking Cipro.  He has since battled his way back to health.  He describes his journey in the podcast.

You can listen to Josh’s story through these links:

http://www.floxiehopepodcast.com/episode-008-josh-arnold/

https://itunes.apple.com/us/podcast/floxie-hope-podcast/id945226010

Please subscribe to The Floxie Hope Podcast and leave a review on iTunes if you enjoy the episode.  Thank you!

 

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Fluoroquinolone Antibiotic Dangers: Why Didn’t They Tell Me??

GABA receptors and fluoroquinolones

Copyright 2009 Pharmacology Weekly, Inc. Printed with Permission.

There are hundreds of peer-reviewed research articles about how harmful fluoroquinolones are.

The harm done by these dangerous drugs hasn’t been communicated to patients or medical professionals though.

Here are a few things your doctor should have told you about fluoroquinolones before she or he prescribed them to you:

FLUOROQUINOLONE ANTIBIOTIC DANGERS: WHY DIDN’T THEY TELL ME?

Thank you for reading and sharing!

 

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Lessons from Entrepreneurs

One of my favorite podcasts is Entrepreneur on Fire with John Lee Dumas. It’s a fun and interesting podcast that fits just about perfectly into my commute. In it, John Lee Dumas interviews business owners about their entrepreneurship journey.

Because I relate everything in my life back to fluoroquinolone (FQ) toxicity, some things brought up on Entrepreneur on Fire often made me think about flox-related issues.

One thing that is brought up regularly on Entrepreneur on Fire is the power of networking. It seems that every time I talk with someone about FQ toxicity they say, “that happened to me,” or, “that happened to my husband, wife, sister, brother, mom, dad, uncle, aunt, child, neighbor, etc.” However, it also seems that no one outside of the “floxie” community really knows about FQ toxicity. It’s a strange combination of common and unheard of. It’s as if everyone thinks that they’re a rare case, or they internalize the lack of recognition of FQ toxicity in the medical community, or they assume that there must be other factors at play because antibiotics “don’t do that,” or they get better and don’t think about it any more.

I’m honestly not sure where the dissonance lies, and I am certainly biased in thinking that I see FQ toxicity everywhere, but I wonder if there just aren’t enough people talking about it. I wonder if, like in business, what is necessary for getting the word out about FQ toxicity is a whole lot of chatting about FQ toxicity and a whole lot of networking. If all of us who know about FQ toxicity shared something on our social media sites about FQ toxicity on a regular basis (daily, weekly, monthly – whatever you feel comfortable with), maybe more people would connect the dots and start talking about FQ toxicity. If people see articles or blog posts about FQ toxicity, maybe they’ll realize that they’re not alone in their suffering, or maybe people will start to believe that their loved one who is sick after taking a FQ isn’t just “being difficult,” or maybe people will think twice before taking a FQ themselves, or giving a FQ to a loved one. Maybe, if people hear about FQ toxicity enough, they’ll see that it’s a problem, and that something needs to be done about it.

I think that there is a lot of value in in-person networking and discussion of FQ toxicity as well as social media networking. Conversations can be initiated, and a lot of people can learn about the dangers of Cipro, Levaquin, Avelox and the other fluoroquinolones if, when we are asked, “What do you do?” those who know about FQ toxicity answer, “I’m a ____, and I also advocate for fluoroquinolone toxicity awareness,” or something like that. I understand that it’s not entirely healthy to base your identity in your sickness, but, in my case it’s an accurate description of my life. I spend more time and energy working on FQ toxicity advocacy than I do on my “real” job. If we all opened up the door to talk about FQ toxicity when networking, maybe we could not only make people more aware of FQ toxicity, maybe we could chat with the “right” person to advance our cause. You never know who someone is connected to. Maybe the next person that you chat with at a networking event is connected to a powerful doctor, or someone influential in the media, or whatever.

The book, “The Tipping Point” by Malcolm Gladwell, was brought up on Entrepreneur on Fire the other day. According to the back of the book, “The tipping point is that magic moment when an idea, trend or social behavior crosses a threshold, tips, and spreads like wildfire.” One day, FQ toxicity is going to reach a tipping point where it “spreads like wildfire,” and people know that fluoroquinolones are dangerous drugs that cause multi-symptom illness. One day, everyone will know how foolish it is to disrupt the DNA and RNA replication process of bacteria and mitochondria with chemo drugs masquerading as antibiotics. One day, it will be seen as a crime against humanity that these drugs were given out to children with ear infections. We’ll get to that tipping point where everyone realizes the dangers of fluoroquinolones, as us “floxies” do. Talking about FQ toxicity incessantly, and networking and sharing information, insights and stories is how we will reach the FQ toxicity awareness “tipping point.” And once the tipping point is reached, change will occur.

As Margaret Mead said, “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” We change the world, and we reach the tipping point, one person at a time. We contact people, we take opportunities that are in front of us, and we create change – through networking, sharing and talking. It will behoove us to take tips from successful entrepreneurs – network, talk, spread ideas and knowledge, sell our world-view, etc. until the tipping point is reached.

 

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We must take time to grieve

These beautiful words were written by Catherine Zimmerman:

Grief and loss are a part of living with fluoroquinolone injuries. While living with this post drug-induced reality, we must take time to grieve. Whether you are the survivor or supporter of the floxed, part of recovery includes tending to grief. 

My adult son was floxed in October. I took a leave of absence from my job to support him and his family during the early days of complete disability. His profound loss of health, the many unknowns about the extent and trajectory of his injuries and the uncertain pathway to healing create a context for a complex grief process. Yet little has been written about the need to acknowledge our grief, and the important work of mourning. Grief occurs as the result of how profoundly fluorquinolones change lives, thrusting individuals and families into a state of disequilibrium caused by illness.

There are many potential losses associated with fluoroquinolone injuries including the loss of health and all the small daily activities and certainties that health affords. Roles such as family breadwinner or athlete may also be altered, and the many small roles that make up the simple pleasures of daily life – may also be beyond reach. A person who has been floxed loses the certainty of health. Changes may occur in terms of how life is centered… now time, energy and money are consumed by managing symptoms and how to survive and heal the body. An image of oneself as strong and capable may be replaced by an acceptance of the how fragile we really are, if one little pill can so totally alter our lives.

Each perceived loss is felt and therefore must be grieved. It is necessary to mourn our losses… even as family members, caregivers and supporters. If those we love have been floxed, their lives and ours have been altered. As a mental health professional, I recommend acknowledging these losses through a conscious grief journey. Be willing to learn about grief and mourning. Find the courage to talk about your grief. Surround yourself with those who will listen. You are not crazy and you are not alone.

Thank you, Catherine, for so beautifully articulating how many fluoroquinolone victims and loved ones feel.

 

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The Floxie Hope Podcast Eposode 2 – Nick Luciano

Nick Luciano joined me for the second episode of The Floxie Hope Podcast.  In it, Nick describes his journey through fluoroquinolone toxicity induced by Cipro.  Nick went from being a law enforcement officer who worked out daily to being close to bed-bound.  He was unable to work for more than three months after taking Cipro.  He has since recovered most of his health.  His story of healing can be found here – https://floxiehope.com/nicks-story-recovery-from-cipro/

You can listen to Nick tell his story on the podcast through iTunes –

https://itunes.apple.com/us/podcast/floxie-hope-podcast/id945226010

Please subscribe via iTunes too, and you will automatically get The Floxie Hope Podcast downloaded to your phone or computer every time an episode comes out.

If you like this episode, please leave an iTunes review.  All reviews are appreciated!

You can also download this episode of The Floxie Hope Podcast through www.floxiehopepodcast.com

http://www.floxiehopepodcast.com/floxie-hope-podcast-episode-002-nick-luciano/

Thanks for listening, sharing, and spreading the word about fluoroquinolones!

 

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Why NSAIDs Suck for Floxies (and Probably Everyone Else Too)

After fluoroquinolone toxicity, many people have trouble handling NSAIDs.  By “have trouble handling” I mean that NSAIDs lead to an explosion of fluoroquinolone toxicity related symptoms for many (but not all) people.  I know that the last time I took a NSAID corresponded with the flox-bomb going off in my body – my hands and feet swelled and were painful, I had hives all over my body, my energy was gone, my tendons were weakened, my memory and concentration were shot, I had a massive amount of anxiety and many other symptoms.  I intend to avoid NSAIDs for the rest of my life because of this, and other people’s similar experiences.

That’s nice anecdotal evidence, Lisa, but it’s anecdotal and therefore not very convincing. 

From the warning label for Cipro/ciprofloxacin

“NSAIDs – Non-steroidal anti-inflammatory drugs (but not acetyl salicylic acid) in combination of very high doses of quinolones have been shown to provoke convulsions in pre-clinical studies.”

Also, from Pharmacology Weekly, “convulsive seizures have been reported in patients taking fluoroquinolones, especially if they are also taking nonsteroidal antiinflammatory drugs (NSAIDs).”

Well, that sucks, but I’m not taking NSAIDs concurrently with fluoroquinolones and I haven’t had seizures.  The question remains – Why shouldn’t I have NSAIDs after fluoroquinolone toxicity?

Nasty Carboxylic Acid Molecule

The answers, I think, come from the fact that both fluoroquinolones and NSAIDs have a carboxylic acid molecule in them.

When not metabolized properly, carboxylic acid molecule containing substances can form poisonous acyl-glucuronides and acyl-CoA thioesters.  Poisonous metabolities.  And, unfortunately, “When such metabolites react with critical proteins, cellular functionality may be disturbed or an immune response may be induced, eliciting adverse effects that in serious cases can be fatal” (from the article, Metabolic activation of carboxylic acids – all quotes in this post are from that article, unless otherwise specified).

Carboxylic acid molecules are found in various xenobiotics (a chemical or substance that is foreign to an organism or biological system), including fluoroquinolones and NSAIDs, as well as in biological systems “such as fatty acids, keto-acids, bile acids, messenger molecules and breakdown products from hormones and other endogenous molecules.”  The existence of carboxylic acids in our natural environment and processes has led us to be able to metabolize carboxylic acid molecules well.  Usually.  Until we aren’t able to metabolize them well any longer.  The conversion of carboxylic acid molecules into poisonous metabolites that react with proteins has to do with the following:

“It was also recognized early on that the isomers of acyl glucuronides (formed as a result of intramolecular acyl migration) can be equally or even more potent electrophilic species than the parent acyl glucuronide, and that these iso-glucuronides covalently bind to proteins via another mechanism [4]. Furthermore, acyl glucuronides are not only able to directly acylate cellular proteins, but they can also transacylate the cysteine thiol of glutathione (GSH), leading to drug-Sacyl- GSH, which in turn is a highly reactive species [5]. However, we still know very little about the overall toxicological significance of acyl glucuronides or their derivatives. A discussion about the causal role of acyl glucuronides in drug toxicity must not only consider the differential reactivity of the drug acyl glucuronides (e.g., type of substitution at the alpha carbon, half life [6-8]) but also the nature of the nucleophilic targets”  from Editorial [Hot Topic:Acyl Glucuronides: Mechanistic Role in Drug Toxicity? (Guest Editor: Urs A. Boelsterli)] by Urs A. Boelsterli (213-214).

Got that?  Don’t worry, most people don’t.  Even the author of that quote, Urs A. Boelsterli, goes on to say that, “Like for other signaling paradigms, it seems that the complex balance between bioactivating and protective pathways may ultimately determine the outcome in vivo, rather than one single factor (reactivity of an acyl glucuronide) alone. Thus, the exact role of acyl glucuronides in drug safety assessment is simply not known and cannot be generalized.”  Basically, it’s not known why carboxylic acid containing drugs sometimes turn into poisonous metabolites that form covalent adducts with critical protiens.  They don’t always.  But sometimes they do.  And when they do, a whole load of bad health outcomes occur.

Removal of carboxylic acid containing drugs from the market

Many carboxylic acid containing drugs, including NSAIDs, have been removed from the market because of safety issues.  “Many of the carboxylic acid containing drugs that have been associated with toxicity – idiosyncratic or otherwise – belong to the therapeutic class of NSAIDs.” And “Of 29 drugs withdrawn from the market in the UK, Spain or USA between 1974 and 1993, nine were carboxylic acid-containing drugs, making this compound class the most frequently involved in drug discontinuations in this period.”

Several fluoroquinolones have been removed from the market.  Omniflox/temafloxacin, Raxar/grepafloxacin, Trovan/trovafloxacin, Zagam/sparfloxacin, and Tequin/gatifloxacin have all been taken off the market in the U.S.

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Interactions between carboxylic acid containing drugs and mitochondria

Diclofenac is a NSAID that is still on the market despite its association with immune-mediated toxicity and hepatic failure.  “studies have shown that diclofenac inhibits mitochondrial function, minimising ATP production and mitochondrial permeability transition [85,86] . Uncoupling of oxidative phosphorylation may be a class characteristic of NSAIDs and other carboxylic acid drugs; they act as proton ionophores.”

There is quite a bit of evidence that fluoroquinolones interfere with mitochondrial function “Bactericidal Antibiotics Induce Mitochondrial Dysfunction and Oxidative Damage in Mammalian Cells” and “Delayed cytotoxicity and cleavage of mitochondrial DNA in ciprofloxacin-treated mammalian cells” are two of my favorite articles.  Also, the FDA admits that mitochondrial damage is the likely mechanism through which fluoroquinolones cause peripheral neuropathy.

Acyl-CoA thioester formation is one of the metabolic pathways through which carboxylic acid molecule containing substances can form “chemically reactive metabolites that are capable of participating in nucleophilic-type reactions leading to the formation of covalently bound protein adducts.”  Acyl-CoA formation is “an integral part of mitochondrial energy metabolism.”

Delayed reactions and tolerance thresholds

A couple explanations for the delayed adverse reactions that people experience from fluoroquinolones come from the metabolites formed by the carboxylic acid molecules in FQs and NSAIDs, and also from their reaction with mitochondria.  Urs Boelsterli notes that, “On the other hand, although glucuronidation of carboxylic acid-containing drugs may cause delayed toxicity due to reactive acyl glucuronide intermediates, this process may at the same time protect from the acute toxicity of the aglycone or its oxidative metabolite(s).”  (Uhhhh…. Thanks for the delayed reaction that made this whole ordeal deniable for doctors?  Well, it’s better than acute death, so there’s that.)

In “Mechanisms of Pathogenesis in Drug Hepatotoxicity Putting the Stress on Mitochondria” it is noted (by Urs Boelsterli and others) 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.”

To put this section in more simple terms, delayed reactions and tolerance thresholds are real and there are several hypotheses for why people experience delayed adverse reactions to fluoroquinolones, NSAIDs, and other carboxylic acid containing, mitochondria damaging drugs.

Staying in the Lipids

Another possible explanation for delayed reactions and relapses is that fluoroquinolones and NSAIDs stay in the body.  I’ve always been skeptical about that possibility, but maybe they stay in the lipids.  “For example, several studies have shown the ability of xenobiotic carboxylic acids to be incorporated into complex lipids (e.g., formation of ‘hybrid’ tri-acyl glycerols by ibuprofen or fenbufen [90-92] ), thus prolonging the time the drug stays in the body, or potentially causing adverse effects through inhibition of lipid-metabolizing enzymes etc. [93] . The toxicological effect of such hybrid lipids is not known at present.”

Fluoroquinolones thoroughly mess up lipids.  The article “Comparison of the Effects of Subinhibitory Concentrations of Ciprofloxacin and Colistin on the Morphology of Cardiolipin Domains in Escherichia Coli Membranes” goes over how ciprofloxacin adversely affects cardiolipin, “an important component of the inner mitochondrial membrane, where it constitutes about 20% of the total lipid composition” (wiki).  “Characterization of the Interactions between Fluoroquinolone Antibiotics and Lipids: a Multitechnique Approach” is also an informative article.

Something to note is that the tests for autoimmune diseases aren’t testing the activity of the immune system, as one might assume, they are testing for cellular damage antibodies.  Antibodies to phospholipids are a category of tests for lupus, and the one of the tests in that category is that for a cardiolipin antibody.

Autoimmune Diseases and reactions

Some of the things said in “Metabolic activation of carboxylic acids” made me think that carboxylic acid containing drugs may be (causally) related to autoimmune diseases.

“high intra-cellular or plasma concentrations of acyl glucuronides may lead to the nonspecific formation of haptenated proteins that are able to invoke an immune response in susceptible individuals.”

“When such metabolites react with critical proteins, cellular functionality may be disturbed or an immune response may be induced, eliciting adverse effects that in serious cases can be fatal”

I’m honestly not sure whether or not the “immune response” noted is the same as an autoimmune disease.

It makes me wonder though – What is the relationship between carboxylic acid molecules and autoimmune diseases?  The fact that both NSAIDs and hormones contain carboxylic acid molecules makes me wonder whether carboxylic acid metabolites are the reason that women have more problems with autoimmune diseases than men.  (Women have a lovely monthly cycle of hormonal fluctuations that typically cause pain that is often treated with NSAIDs.)

The flox bomb went off in me 2 weeks after I finished my course of cipro, while I was taking NSAIDs (ibuprofen) because I was starting my period.  Triple whammy.  And it most definitely felt like my body was being attacked from the inside.

GABA issues

I honestly have no idea how GABA receptor issues relate to mitochondrial issues or carboxylic acid metabolism.  I do know that messing with GABA-A receptors is another reason to avoid both fluoroquinolones and NSAIDs, and especially to avoid them together.  From Pharmacology Weekly:

What role do NSAIDs have in the predisposition for developing seizures while also taking a fluoroquinolone antibiotic?

Interestingly, the presence of an NSAID or NSAID metabolite can significantly augment this effect and result in an even greater inhibition of GABA-A receptor activity.  It is, however, important to note that majority of this effect is related to an NSAID that is only available outside of the United States called fenbufen (Afiancen®, Bifene®, Cincopal®, Cinopal®, Lederfen®, Reugast®).9-11,14  It appears that the metabolite of fenbufen, 4-biphenylacetic acid (BPAA), augments the ability of the fluoroquinolone to inhibit GABA binding to the GABA-A receptor.9-11,14  It is important to note that BPPA itself does not inhibit GABA binding to the GABA-A receptor, but rather when BPAA and the fluoroquinolone come in close proximity they interact in such a way that it results in the ability of the fluoroquinolone antibiotic to inhibit GABA binding to a greater degree than by itself.  It is possible that the interaction between a fluoroquinolone antibiotic and BPAA causes some other biologic effect that influences the activity of the GABA-A receptor.  In fact, there is some evidence that some fluoroquinolones (mainly enoxacin and norfloxacin) can increase the activity of nuclear activator protein 1 (AP-1) DNA- and cyclic AMP responsive elements (CRE)-binding activities in both the hippocampus and cerebral cortex.14  It has been suggested that increased activity of AP-1 mediated gene expression is important for activity-dependent plasticity in these regions of the brain and thus contribute to the increased risk for seizures.14  Even though fenbufen has been the main NSAID implicated in this adverse drug reaction, other NSAIDs such as indomethacin, ketoprofen, naproxen, ibuprofen have also been shown to augment fluoroquinolone induced GABA-A receptor inhibition in animal studies.9

While the data most strongly implicate certain fluoroquinolone antibiotics and NSAIDs, CNS side effects and seizures have been reported with many of the fluoroquinolones, including the ones currently on the market.1-5  This is the reason that the product package inserts for the fluoroquinolone antibiotics not only list the above as potential side effects, but also describe the drug interaction with NSAIDs.1-5  As such, until further evidence suggests otherwise, it would be prudent, especially from a medical legal perspective, for healthcare providers to avoid the use of fluoroquinolones with or without NSAIDs in patients who are at greater risk for seizures (e.g., history of epilepsy, severe cerebral arteriosclerosis) or those with a lower seizure threshold (e.g., patients on medications known to do this, renal dysfunction).

Heart Disease

Even if one has never taken a fluoroquinolone, NSAIDs should be used with caution.  The number of NSAIDs removed from the market because they were too dangerous is high.  Vioxx, ibufenac, benoxaprofen have all been removed from the market because of severe toxicity issues.  Vioxx is thought to have directly caused hundreds of thousands of heart attacks.

The Reuters article, “High doses of common painkillers increase heart attack risks” notes that, “Long-term high-dose use of painkillers such as ibuprofen or diclofenac is ‘equally hazardous’ in terms of heart attack risk as use of the drug Vioxx, which was withdrawn due to its potential dangers, researchers said on Thursday.”

Concluding thoughts

Before I got floxed, I would pop ibuprofen like it was candy.  I would take it to ease menstrual cramps, whenever I felt even a little bit achy, and even to help me sleep.  I never had any sort of adverse reaction to it.  I thought of it as “vitamin I.”

It was only after my second exposure to cipro that I could no longer handle ibuprofen.  As I mentioned, the explosion that occurred in my body after taking cipro corresponded with taking ibuprofen for menstrual cramps.  I have not taken an NSAID since and I intend to avoid them, along with every other carboxylic acid containing drug, indefinitely.

Maybe my frequent use of ibuprofen set me up for getting floxed later.

Maybe the horrible reaction that I had to the triple whammy of carboxylic acid molecule containing substances – cipro, ibuprofen and hormones – saved me from future long-term consequences of regular NSAID use.  I don’t know.  I do know that they’re nasty drugs.  Shoot, NSAIDs can cause Stevens-Johnson Syndrome – aka, the worst thing ever, so I’m glad I stay away from them now.

Got it, no NSAIDs.  Problem – I’M STILL IN PAIN!  Any suggestions?

A paragraph at the end of an already-too-long post isn’t the place to fully address this, but I will acknowledge that the lack of safe painkillers is a serious problem.  Here are some options that I have heard good things about (I’m not a doctor, this isn’t medical advice, yadayada) –

  • Tumeric
  • Tart Cherry Juice
  • Vitamin D3
  • Cannabis / Marijuana
  • Opiates (a crappy option in many ways)
  • Acetaminophen / Tylenol (it’s hard on your liver, but it’s not a NSAID)

Here’s an article from Dr. Mercola that lists some additional alternative to pharmaceutical painkillers – http://articles.mercola.com/sites/articles/archive/2014/10/02/narcotic-overdose-deaths.aspx

 

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Repeated Use Doesn’t Make Fluoroquinolones Safe

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I posted “REPEATED USE DOESN’T MAKE FLUOROQUINOLONES SAFE” on www.hormonesmatter.com on 10/1/2014.  Please check it out and share it – thanks!!!

When doctors say things like, “I’ve prescribed fluoroquinolone antibiotics to hundreds of patients and I’ve never seen problems like yours. It’s a good drug with an excellent safety record.” it really irks me.  It irks me for the nine reasons listed, but the one that irks me most is that it’s so illogical.  Doing things wrong repeatedly does not make them right.  Thousands of prescriptions for Vioxx, Thalidomide and DES were written before they were taken off the market or restricted. I’m sure that the doctors who wrote those prescriptions thought that the drugs that they were prescribing were perfectly safe. They weren’t. Fluoroquinolones are not safe either. Lack of recognition of the severe adverse effects does not make them safe – it just means that doctors are as biased and blinded as anyone else. Look at the studies. Look at what Cipro, Levaquin and Avelox do to cells. Cellular destruction results in multi-symptom, chronic illness – in case that fyi is needed.

 

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Dear Doctors: There is valuable information in “Permanent Peripheral Neuropathy: A Case Report on a Rare but Serious Debilitating Side-Effect of Fluoroquinolone Administration“

I’ve been struggling to write a “Dear Doctors” post for a while.  Everything that I’ve tried to write has been too bitter, or too manic, or too scolding, and nothing has yet been published.

I recently stumbled across a great article though, and I now have a “Dear Doctors” letter.  Here it is:

Dear Doctors,

Read this:

Journal of Investigative Medicine HIGH IMPACT CASE REPORTS, “Permanent Peripheral Neuropathy: A Case Report on a Rare but Serious Debilitating Side-Effect of Fluoroquinolone Administration

And please change how you prescribe fluoroquinolones accordingly.

Thank you,

Lisa Bloomquist

The article is great and I highly recommend that everyone read it.  Following is my breakdown of it.  Everything that is italicized is a direct quote from “Permanent Peripheral Neuropathy, A Case Report on a Rare but Serious Debilitating Side-Effect of Fluoroquinolone Administration” by Dr. Jacquelyn K. Francis and Dr. Elizabeth Higgins.  (Everything that is not italicized is my commentary.)  The article was published in the Journal of Investigative Medicine High Impact Case Reports and was published on July 27, 2014.

INTRO

While there has been success in recent years in decreasing the numbers of unnecessary antibiotic administrations, still rampant in medical practice is the inappropriate use of antibiotics. Fluoroquinolones administration is no different.

Indeed – fluoroquinolones are being prescribed inappropriately.  Not many people are arguing that fluoroquinolone antibiotics should be banned.  Most of us are arguing that fluoroquinolone antibiotics are used INAPPROPRIATELY, and in being used inappropriately they are causing unnecessary harm.

These bactericidal agents are capable of central nervous system (CNS) penetration, with an impressive treatment profile that includes an enhanced spectrum of activity, high oral bioavailability, high serum drug concentration that parallels that of intravenous drug administration, and rapid mechanism of action. It is for this reason that physicians favor these drugs for treatment of simple infections, which range from uncomplicated urinary tract infections (UTIs) and gastrointestinal infections to lower respiratory infections and pneumonias.

Unfortunately, they’re not APPROPRIATE for use in treating simple infections.  Fluoroquinolones are strong drugs.  They are chemotherapy drugs masquerading as antibiotics.  But doctors reach for them for simple infections because, well, these two quotes illustrate the problem well:

In The New York Times article, “Popular Antibiotics May Carry Serious Side-Effects” it was noted that, “In an interview, Mahyar Etminan, a pharmacological epidemiologist at the University of British Columbia, said the drugs were overused ‘by lazy doctors who are trying to kill a fly with an automatic weapon.’”

In “Your Doctor’s Knee-Jerk Reflex: How Not to Get Kicked” by Dr. David Katz, M.D., published in the Huffington Post, it was noted that, “Often, the easiest way for a busy clinician to be sure to ‘cover the bases’  with an antibiotic is to go after a fly with an elephant gun. The collateral damage can, predictably, be considerable; a consequence of knee-jerk prescribing.”

According to established guidelines, however, these antibiotics are recommended as drugs of last resort and for treatment of cases refractory to other safer antibiotic alternatives.

When it is uncovered that the increase in rates of fibromyalgia, autism, autoimmune diseases, diabetes, chronic fatigue syndrome / M.E., ALS, Alzheimer’s Disease, Lymphoma and other diseases since 1990 is due to fluoroquinolones, doctors will cry to the FDA and AMA about how they weren’t warned.  But they were warned.  FDA and AMA guidelines state that fluoroquinolones should only be used as a last resort and that magnesium levels should be checked prior to administration of fluoroquinolones.  Too many doctors just ignored those recommendations.

Reports in recent years of the adverse drug events of these drugs are on the rise, with not only an overrepresentation of common antibiotic complaints, including diarrhea, nausea, and headache that occur at rates higher than most other antimicrobials on the market, but there is also mounting evidence suggesting the potential for long-term adverse peripheral nervous system (PNS) effects from fluoroquinolone usage. The need for physicians to be judicious when prescribing these drugs is therefore paramount.

Patients are crossing their tolerance thresholds for fluoroquinolones.  There is only so much damage that their cells can withstand, and people are developing fluoroquinolone toxicity syndrome after crossing their cellular damage threshold.

Yes, physicians need to be judicious when prescribing these drugs.  That would be lovely.

CASE PRESENTATION

A 57-year-old Caucasian female presented to outpatient clinic with complaints of dysuria, polyuria, and urinary urgency. Urinalysis showed 2+ leukocytes and trace blood. Based on her clinical presentation, she was treated for UTI with a ciprofloxacin regimen of 250 mg twice a day for 5 days. Subsequent urine culture showed no evidence of organism, and against advice for reevaluation, she was lost to follow-up. She presented 2 months later reporting whole body burning and alopecia. The burning, she claimed, started 2 or 3 days after completion of the prescribed course of ciprofloxacin. The burning lasted 3 weeks and resolved only to recur, unrelentingly, 3 weeks later. She had been unable to adorn clothing during this time, for she said this triggered whole body burning. At the point wherein she was finally able to wear clothing, she presented to the clinic. Hydration and Epsom salt soaks provided no relief. She reported pain of 10/10.

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Note that the patient DIDN’T EVEN HAVE AN INFECTION.  She was poisoned with ciprofloxacin when there wasn’t even an infection.  Talk about INAPPROPRIATE!  Criminal is more like it!

Her peripheral neuropathy pain was so bad that she was “unable to adorn clothing during this time, for she said this triggered whole body burning.”  THAT. IS. HORRIBLE!  A pain level of 10/10 is what she experienced.  That is a SEVERE adverse reaction and even the possibility of a reaction like that should dissuade doctors from prescribing fluoroquinolones frivolously.

She didn’t even have an infection.  It boggles my mind.

Her past medical history is significant for trigeminal neuralgia, in remission for 12 years. The patient was on no medications at the time of her visit. She has no specific medication allergies, but does get gastrointestinal symptoms with opioids, namely, fentanyl. Physical examination was unremarkable. Vitals at the time that she was seen included the following: blood pressure 132/78 mm Hg, temperature of 97°F, heart rate of 60 beats per minute, respirations of 18. Her body mass index was 17.94, down from 20.3 two months earlier. On detailed neurologic examination, cranial nerves II through XII were intact bilaterally. There was no pronator drift of outstretched arms. There was some muscle wasting in biceps; however, overall tone was normal. Strength was full bilaterally. Reflexes were 2+ and symmetric at the biceps, triceps, knees, and ankles. Plantar responses were flexor. Light touch and pinprick produced pain and paresthesias diffusely in the upper and lower extremities; however, position sense and vibration sense were intact in fingers and toes. Rapid alternating movements and fine finger movements were intact. There was no dysmetria on finger-to-nose and heel-knee-shin. There were no abnormal or extraneous movements. Romberg was absent. The patient’s posture was normal. Gait was steady with normal, though tentative, steps, base, arm swing, and turning. Heel and toe walking were normal. Tandem gait was normal. She had no discernable rash or skin lesions.

Subsequent complete blood work analysis to check for an electrolyte abnormality basis of her complaints was unremarkable. Her complete blood count was normal with a hematocrit of 41%. Her vitamin B12 level was 258 pg/mL, with a normal range of 200 to 900 pg/mL. Her thyroid stimulating hormone level was 2.05, with a normal range of 0.4 to 6.0. Her immunoglobulin levels were normal. Her vitamin D level was 13 nmol/L (optimal >30 nmol/L). Copper level was 98 mg (normal 50-80 mg). Vitamin E was normal at 12.7 µg/mL (normal range = 5.5-17 µg/mL). Vitamin B1 was normal at 5.4 µg/dL (normal range = 2.5-7.5 µg/dL).

Her blood work and further questioning could provide no new medical etiology for her symptoms, and so the patient was subsequently sent for complete neurological workup. Workup included heavy metal toxicity screening to assess for possible heavy metal exposure to lead, mercury, cadmium, and zinc. Electrophysiological studies were also done to assess neuromuscular nerve action potential transmission, a test that could discern a neuromuscular disorder etiology. Three-millimeter skin punch biopsy to assess for small fiber density and possible neurologic process were also done. These tests were all negative. Neurological workup could not determine a unique cause of her symptoms. It was concluded that if her symptoms were neurologic-based, it was, in fact, a multifocal process.

Fluoroquinolone toxicity syndrome has been unrecognized for so long for many reasons.  One of the biggest reasons is that the tests all come out “normal.”  This simply means that the tests are wrong.  If a patient has pain levels that are a 10/10, there’s something wrong with her and if the tests don’t show it, the tests aren’t sufficient.

Two years after the initial onset of symptoms, the patient continues to suffer from polyneuropathies chronologically related to ciprofloxacin use. At her most recent visit, she describes constant pain of 7/10 and is unable, she states, to ambulate for more than 2 minutes, without intense shooting pains up and down her lower extremities. She describes “pins and needles” up and down her legs and thighs radiating to her buttocks and feet. She claims that her upper body and abdomen have now been spared of such feelings. She describes severe alopecia and ambulates now with a broad-based gait. She describes being on permanent disability because of her condition. The rest of her physical examination remains unchanged. There are no gross neurological deficits discernible on neurologic examination. The patient remains on amitriptyline 20 mg daily for control of her pain symptoms.

This patient’s life has been ruined.  My heart goes out to her.  Two years later, she still suffers from chronic pain and is now disabled.  THIS IS NOT OKAY.

DISCUSSION

Fluoroquinolones are fluorinated quinolones, the only bactericidal agent in the antibiotic class capable of directly inhibiting DNA synthesis.

Fluoroquinlones may not be the only antibiotics that damage mitochondria, but they are the only antibiotic class that inhibits DNA synthesis.  And who, exactly, thought it would be a good idea to give people drugs that inhibit DNA synthesis?

The harm that fluoroquinolones do to DNA shouldn’t come as a surprise.  It was noted in “Quinolone binding to DNA is mediated by magnesium ions” in 1992 that, “Even if reconsidered in terms of affinity, the interaction with DNA is still of great concern because of the possible long-term genotoxicity of quinolone compounds, which are increasingly adopted as first-choice antibiotics for the treatment of many infections, and because it addresses the real mechanism of action for this class of molecules.”

Caution was warranted.  It was not used.

They do this by promoting cleavage of bacterial DNA in the DNA–enzyme complexes of DNA gyrase and topoisomerase IV.  Generally, gram-negative antibacterial activity correlates with inhibition of DNA gyrase, and gram-positive antibacterial activity corresponds with inhibition of DNA type IV topoisomerase.  With the introduction of these drugs in the 1960s, physicians were able, for the first time, to treat severe gram-negative infections orally. The first successful fluorination of part of the quinolone drug in 1986, in the form of norfloxacin, brought with it the capability of crossing the blood–brain barrier and achieving CNS penetration.

Fluoroquinolones have the capacity to cross the blood-brain barrier and achieve CNS penetration.  NOT GOOD.

This and the already great treatment profile in the form of enhanced spectrum of activity, high oral bioavailability, high serum drug concentration comparable to intravenous infusion, and rapid mechanism of action added to the popularity of these drugs ultimately resulting in the indiscriminate use of these drugs. The enhanced treatment profile of these drugs came at a price however, with adverse effects so severe that use of many fluoroquinolones since then being restricted or the drugs withdrawn from the market entirely.

These drugs have been used indiscriminately at a huge price.  If, as I suggested above, the increase in chronic, debilitating, mysterious diseases that has come about since 1990 is, indeed, due to fluoroquinolones, the “price” of these drugs is even greater than what the study’s authors have noted.

One of the challenges of diagnosing a patient with fluoroquinolone-associated peripheral neuropathy is the diffuse, confusing, and delayed array of symptoms that can occur. A 1996 study first brought these adverse effects to light.

I could cry.  Delayed adverse reactions are noted in a journal article.  The fact that symptoms are diffuse, confusing, and difficult to diagnose is acknowledged in a journal article.  E-hugs to Dr. Francis and Dr. Higgins.

While patients on the fluorinated drugs exhibited less side effects than those associated with first-generation quinolone predecessors, such as nausea and gastrointestinal disturbances, 0.9% to 1.6% experienced adverse reactions relating to the peripheral and central nervous system, including headache, dizziness, drowsiness, agitation, psychosis, and convulsions, as well as peripheral sensory disturbances, symptoms that had never been complained of prior, at least not on any significant scale.

It is not okay to induce possibly permanent nervous system damage in .9 to 1.6% of those who take fluoroquinolones – especially when the nervous system damage can be permanent.  26.9 million prescriptions for fluoroquinolones were written in 2011 alone.  .9% of 26.9 million is 242,100 and 1.6% of 26.9 million is 430,400 – PEOPLE.  Between 242,100 and 430,400 people had adverse central and/or peripheral nervous system side-effects.

Note that peripheral nervous system damage from fluoroquinolones could easily be mistaken/misdiagnosed as fibromyalgia, and central nervous system damage can lead to depression, anxiety and other psychiatric illnesses.

Of these patients, 81% had symptoms occurring within 1 week of drug administration, with paresthesia being the mainly reported symptom. Five years later, a 2001 study found that contrary to previous reports suggesting that fluoroquinolone-associated PNS events are mild and short term, 80% of study participants reported severe events that typically involved multiple organ systems, especially the PNS, with symptom onset as early as 24 hours within initiation of treatment. 58% of these cases had symptoms lasting greater than 1 year.

Indeed.  My thanks to the authors of this paper for noting that peripheral nervous system adverse reactions to fluoroquinolones are neither mild nor short term.  Compared to other floxies, my reaction was moderate – and I still had pain for more than a year.

Another 2001 formal study that sought to assess the prevalence of fluoroquinolone-induced PNS adverse side effects highlighted the severity of these effects. The study concluded that there was a high association between fluoroquinolone antibiotics and severe, long-term adverse PNS and multiple organ system effects that included PNS sensory symptoms (91%), peripheral neuropathy motor symptoms (55%), and CNS effects (75%). Over 80% of the patients surveyed had sequalae stemming from fluoroquinolone use that lasted for greater than 1 year.  A subset of these patients and their adverse drug events are included in Table 1.

Risk is a function of frequency and severity of adverse reactions.  Adverse reactions to fluoroquinolones are severe.  I don’t think that they’re rare (https://floxiehope.com/2013/08/09/is-fluoroquinolone-toxicity-rare/).  Fluoroquinolones are far too risky to be used as they are currently being used.

Despite these seemingly significant numbers and overwhelming reports from patients, physicians continue to prescribe fluoroquinolone antibiotics unsystematically, against US Food and Drug Administration recommendations. The pressures of health care facilities and patients alike to increase patient turnaround and quickly alleviate symptoms may compound this problem. 

Dear doctors – please, please, please listen.  Please listen to your patients, listen to the AMA and the FDA, and listen to your colleagues who wrote this case-study.  We see that fluoroquinolones are dangerous drugs and we are trying to tell you about them.

As highlighted in the aforementioned case, the peripheral neuropathy reported with fluoroquinolone administration can be severe, debilitating, and permanent. It is for this reason that physicians need to practice due diligence when prescribing not only antibiotics, but any drug.

THANK YOU Dr. Francis and Dr. Higgins!

Physicians also need to practice vigilance in the event of an adverse reaction. They can do this with careful follow-up of patients and ensure that patients are aware of all the side effects that may be associated with their prescribed drug. Patients need to know what to look for and where to go in the event that one of these symptoms become manifest. It is our hope that the updated FDA warning and presentation of this case will encourage physicians to be more conscientious of their treatment selections.

Yes, we need recognition and an appropriate treatment protocol for everyone suffering from fluoroquinolone toxicity.  Thank you for saying it so well, Drs. Francis and Higgins!

TAKE HOME POINTS

  • The FDA recommends that fluoroquinolones be used as a drug of last resort and for treatment of cases refractory to other safer antibiotic alternatives.
  • The FDA updated their black box warnings on all fluoroquinolones to stress the rapidity of onset and permanence of peripheral neuropathy associated with their use.
  • Physicians should be aware of the risks and side effects associated with the drugs that are prescribed and be able to inform patients of the risks associated with the use of these drugs.
  • Physicians should always aim to administer the least broad spectrum antibiotic possible based on known sensitivities and regional resistance PATTERNS.

I know that I’m incredibly biased, but I think that the tide is shifting.  I think that the severity of adverse reactions to fluoroquinolones are being recognized.  With recognition will come change in their behavior.

I hope for change.

 

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I HOPE for Change

This site was started to give hope for healing to those suffering from fluoroquinolone toxicity. Stories of healing and recovery are shared on www.floxiehope.com so that the people who are going through the destruction done by fluoroquinolones that we refer to as “floxing” (as one Floxie noted, it’s cuter than calling it disability brought on by a chemotherapeutic drugs masquerading as antibiotics) can see that others have recovered – and so that they can learn lessons from those who have gone through fluoroquinolone toxicity and healed.

More than the lessons and techniques used for recovery though, I think that the important thing that the stories convey is hope – hope that recovery is possible. Recovery happened for the people who have shared their stories on floxie hope – so there is reason to hope that you will recover too. Sarah, Bill, Crystal, Ruth, Sharon, Brian, Keri and all of the other people who have shared their stories on floxiehope have recovered. If they can do it, so can you. There is hope in knowing that other people have emerged from this horrible toxicity syndrome. And HOPE, I believe, is healing. It helps to believe that there is a light at the end of this tunnel. It helps to know that it’s possible for the spiral of ill-health, and new, scary symptoms, to come to an end; and that recovery and a return to health is possible.

None of the effects of fluoroquinolones on the body or brain are “in your head” or a choice, but, with that said, the mind is a powerful thing. Having hope, and faith that this will pass, and that your health will improve, is important and powerful. HOPE is healing.

In many of the posts on this site, and articles linked to through this site, I have strayed from a message of hope for healing/recovery. I have posted essays that are angry, fearful, questioning and/or accusing, not hopeful. Some of these posts/essays have scared many of you. Some of them have probably pissed you off. Some of them have probably made you feel less hopeful about the prospects for your future health.

Understandably, I have gotten push-back from people in response to those posts. People have said, “I thought this site was supposed to be about HOPE, not ____” (fill in the blank with any scary, intimidating fluoroquinolone related topic). I’ve been thinking about the sentiment that they have expressed a lot lately, and these are my thoughts:

First, I’m sorry. I’m sorry for inducing fear and/or pissing you off. The fact that fluoroquinolones do really horrible things to cells, and that I am really angry at Bayer, J&J, the FDA, doctors, pharmacists and everyone else responsible for this mess, does not detract in any way from the fact that people can, and do, recover from fluoroquinolone toxicity. If it’s helpful, please skip my downer posts and just read the stories on this site. The stories are reason for optimism and hope. They are stories of perseverance, strength, optimism through adversity and healing. They are meant to convey HOPE for healing.

Second – I’m going to defend myself a bit – I think that the scary and/or intimidating topics are hopeful – they’re just hopeful in a different way. They’re not about hope for healing or recovery, but they are about hope for other things – like information, justice, answers, and stopping this insane system that allows mineral chelating, mitochondria destroying, multi-symptom chronic illness inducing chemicals to be given to people to treat urinary tract infections.

The way that things are now is not okay. Systems are broken and people are getting hurt by those broken systems.

I HOPE that the absurdity of people needlessly being hurt by fluoroquinolones is realized – by everyone.

I HOPE that doctors start realizing that the people who come into their offices with multi-symptom, chronic, mysterious ailments after a course of fluoroquinolone antibiotics are suffering from fluoroquinolone toxicity. I HOPE that they realize that these reactions are not as rare as they have been led to believe. I HOPE that they think twice about prescribing fluoroquinolones again after they recognize fluoroquinolone toxicity in their patients. I HOPE that the information on this, and other FQ toxicity related sites, gives them the information that they need to see that fluoroquinolones are dangerous drugs.

I HOPE that people gain information from this site with which they can become empowered. I HOPE that the articles and posts on here give you the information that you need to understand what is going on in your body. I HOPE that you are able to take the information that you gather from this site and share it with your doctors, friends, family, etc. I HOPE that they are able to gain understanding of what you are going through from reading about fluoroquinolone toxicity.

I HOPE that the FDA quits being inept and more tightly regulates fluoroquinolones and other dangerous drugs.

I HOPE that we all gain answers to the question of, What in the world is going on in my floxed body??? I HOPE that I (or other people) am able to gather up the articles and information that is necessary to answer that question. And, with that information, I HOPE that a protocol is established that helps people to heal from fluoroquinolone toxicity.

I HOPE that we all gain justice. I HOPE that Baron & Budd, or any other law firm that brings a suit against Bayer and Johnson & Johnson for the damage that their drugs have done to people, wins and that all victims of fluoroquinolones are adequately compensated for their pain and suffering. I HOPE that the lawyers generally stop pussy-footing around with lawsuits for individual symptoms and start bringing lawsuits against FQ producing corporations for inducing multi-symptom, chronic illness in victims. Because that’s the truth – it’s what’s happening. I HOPE that the top executives and scientists at the corrupt pharmaceutical and big-ag companies that are poisoining us all are charged with, and found guilty of, crimes against humanity. I HOPE that justice is served – in every way possible.

I HOPE that all of the people and institutions that are supposed to be keeping the pharmaceutical industry in check (the FDA, the media, the justice system, conscientious doctors, etc.) – who are currently failing – start DOING THEIR JOBS.

And of course, still, I HOPE for your healing. I HOPE for your recovery. And I HOPE for the continued wellness of those who have healed.

This site is about HOPE. It’s about HOPE for change in just about every area to do with fluoroquinolone toxicity. It’s about HOPE for individual change – mainly the healing kind. And it’s about HOPE for institutional change. I HOPE it comes soon – because too many people are getting hurt by cipro/ciprofloxacin, levaquin/levofloxacin, avelox/moxifloxacin and floxin/ofloxacin. It’s not okay. It needs to change. I HOPE it changes.

 

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“Side Effects” or collateral damage? Is there a difference?

The mantra of “all drugs have side-effects” has been so ingrained in us that we seem to have forgotten that these “side-effects” are deadly or devastating assaults on the health of those who suffer from them.  It is seen as a necessary evil that the medical/pharmaceutical industry has collateral damage and, rather than working to minimize the number of casualties that it has, we have accepted that they must happen and we look the other way.

When did this become okay?  When did it become okay for PEOPLE – sons, daughters, mothers, fathers, sisters, brothers, loved human beings – to become collateral damage in the quest for big pharma’s profits?  Even if you’re not feeling cynical enough to agree with the last sentence, we should still ask, when did it become okay for people to become collateral damage in the quest for minimizing disease and infection?

It is assumed that a certain amount of collateral damage (“side-effects” sounds nicer, but the truth is that some people are sacrificed) is necessary.  But is that assumption true?  It may be true sometimes.  The benefits of a dangerous drug may outweigh the risk of adverse effects in some cases.  But for dangerous drugs, where severe damage to the people who take them is a possibility, collateral damage should be minimized.  Policies should be put in place to minimize the number of people who are exposed to dangerous drugs.  Protocols should be established to ensure that patients are aware that the drugs that they’re taking are dangerous so that true informed consent can be established prior to administration of a drug that has severe adverse effects.

This is common sense.  So why isn’t it being done?  We could all go down the path of conspiracy theories about pharmaceutical companies creating customers instead of providing tools that will actually help and heal people, but, well, I don’t want this article to get lost down that rabbit hole.  But it is still shameful, and a collective tragedy for humanity, that the real dangers of drugs are not realized and recognized and that proper policies and protocols are not in place to minimize the damage caused by them.

I’m guessing that most of you agree in theory, but to really see that it’s a problem, you need an example.

Fluoroquinolone antibiotics, Cipro, Levaquin, Avelox, etc. are DANGEROUS drugs.  These popular antibiotics, 26.9 million prescriptions for fluoroquinolones were written in 2011 (per the FDA), can cause damage to connective tissue (tendons, ligaments, cartilage, fascia, etc.) throughout the body, damage to the nervous systems (central, peripheral and autonomic), and more.  They disrupt and damage mtDNA, cause mitochondrial malfunction and increase oxidative stress throughout the body.  They cause a massive decrease in important antioxidants like glutatione and superoxide dismutase (SOD) and increase production of lipid peroxide and reactive oxygen species (ROS) that result in cell death.  CELL DEATH.  There is no known cure or treatment for those who are suffering from the adverse effects of these drugs.

When someone does have an adverse reaction to a fluoroquinolone antibiotic (again, Cipro, Levaquin, Avelox, etc.) it can be devastating.  In 2001 Dr. Jay S. Cohen did a study on those who are suffering from severe Fluoroquinolone Toxicity Syndrome and he noted that:

“It is difficult to describe the severity of these reactions. They are devastating. Many of the people in my study were healthy before their reactions. Some were high intensity athletes. Suddenly they were disabled, in terrible pain, unable to work, walk, or sleep.”

On my 32nd birthday I took Cipro to treat a urinary tract infection.  It damaged me.  I experienced peripheral neuropathy (an effect that the FDA just acknowledged on August 15, 2013 – http://www.fda.gov/Drugs/DrugSafety/ucm365050.htm) that made it painful to walk for months, my tendons were weakened and inflamed for a year, I lost my memory, concentration and reading comprehension, I suffered from anxiety and depression, I have heart palpitations and my heart rate has increased.

I was lucky.

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Greg wasn’t as lucky as me.  3 years after taking Cipro for the third time (his reaction was minimal the first two times) he is still unable to walk more than a couple hundred yards because his tendons have disintegrated and torn.  For years after having an adverse reaction to Cipro, he used an electric scooter to get around (a traditional wheelchair isn’t an option when the tendons in your arms are torn too.)  He has had to leave his profession as a professor.  He continues to struggle with his health on a daily basis.

25 year old Zachary says of his condition after taking Cipro, “My tendons, cartilage and nervous system have been chemically torn apart from the inside out. The pain that this causes me 24 hours a day, 7 days a week is excruciating beyond words and I have suffered through it without reprieve, alone, for almost half a year now. I have gone from being nearly 190 lbs, a martial arts teacher and body builder to under 160 lbs, crippled, unable to exercise at all and barely able to walk most of the time; all because I was given a drug that I never needed, that no one really needs, for a suspected infection.”

Though these three examples are of the damage done by Cipro, the other fluoroquinolone antibiotics, Levaquin, Avelox and a few less commonly used ones, are just as devastating.

One woman posted in one of the fluoroquinolone toxicity support groups that if she were an animal, she would get put down.  Think about that for a second.  She is a person, a daughter, maybe a mother and a wife, who thinks that the most humane thing to do is to put her down.  That’s how tortured she feels.  Of course, we don’t put down people and I’m not advocating that we do, I just think that it illustrates the point of how damaging and cruel these drugs are to their victims.

Zach’s words are illustrative of the inhumane torture that people feel when they are suffering from an acute adverse reaction to a fluoroquinolone, “The pain that this causes me 24 hours a day, 7 days a week is excruciating beyond words and I have suffered through it without reprieve.”  That is torture.  It’s cruel and it’s wrong.  We know that torture is wrong when it comes to prisoners of war, yet when Bayer and Johnson & Johnson chemically torture people we call it “side-effects” and look the other way.  It’s not okay though.  There is nothing that is okay about innocent people having system-wide breakdowns that are torturous, cruel and unnecessary.

You may be thinking, out of 26.9 million prescriptions, only a handful of people have been disabled by it, that’s okay.  But think about it, is it really okay?  Even if the number of people who are severely adversely affected by these drugs is small, and I would argue that it’s not, is it really okay for an ANTIBIOTIC to cause people to be disabled and to suffer?  The people who have been hurt by these drugs have lost so much of themselves – their ability to move, their ability to think, their ability to relate to other people, their livelihood, etc.  They lost these things when there were other, safer, drugs available that could have gotten rid of their infection.  No other class of antibiotics even has the potential for this much harm.  Penicillins, tetracyclines, cephalosporins – they’re not perfect, but they won’t cause a long-lasting, severe syndrome that tears apart connective tissue (tendons, ligaments, fascia, etc.) and damages the nervous systems (central, peripheral, autonomic).

Greg, Zachary and I are collateral damage, but we didn’t need to be.  The damage done to us could have been prevented.  A safer alternative drug could have, and should have, been given to us.  We could have been properly warned of the dangers of these drugs before they were administered.  A protocol could have been established to determine whether or not these drugs were absolutely necessary before the prescription was written.  Suffering could have been diminished with the use of a safer alternative drug.

It is a tragedy that people are needlessly suffering from preventable adverse reactions to unnecessarily strong and dangerous drugs.  Please be compassionate toward those who are hurt.  Please shift your thinking from, “all drugs have side-effects” to “side-effects should be minimized in every way possible because they are unacceptable.”  Just as importantly, please don’t become a victim yourself.  Don’t take Cipro, Levaquin or Avelox.  There are safe alternatives in almost every situation.

In closing, here are some wonderfully scathing words of Zachary’s on the topic of fluoroquinolones:

“Fluoroquinolone antibiotics have no place in the practice of medicine unless you agree that experimenting on human beings by irreversibly altering their DNA with purposefully unpredictable results and thus indefinitely crippling them unwittingly is something that falls under the definition of “health.” I’m thinking more in terms of “nauseatingly inhumane,” but that’s just me.”

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Lisa’s Update

One Year Update Pic

I wrote my recovery story about a year ago. A lot changes in a year, so I thought I’d write an update.

I was pretty well recovered when I wrote my story. In most areas, I was about 95% of my pre-flox capacity. I could do most of the physical and mental things that I needed and wanted to do to with relative ease. I could walk, hike, do pilates, swim, dance, work, have good conversations with my friends, maintain relationships, etc. I was healthy enough and life was good. I would have felt fine about staying in the condition that I was a year ago indefinitely.

It has been a nice surprise that I have continued to get better. Little things have improved/gone back to how they were pre-flox.

I started sweating again. I was kind of enjoying not sweating, but it’s good to have that part of my autonomic nervous system working normally again.

I stopped being cold all the time. I had a hard time feeling warm for a long time after taking cipro. Sometime in the last year my body has gone back to its normal – being “hot blooded” (I’m Swedish).

I feel like I felt pre-flox when drinking coffee and alcohol. It’s difficult for me to describe how I felt different after having caffeine or alcohol while I was sick – but it just felt different – and now it feels normal again.

I went through a period of nausea in the last year. For a couple of months, I couldn’t eat without feeling nauseous. I’m not sure if the nausea was because of a break-up that I went through right before it started (lots of people don’t eat for a while after a break-up), if it was a floxing symptom, or if it was a combination – my digestive tract shuts down now when I go through a period of stress. Whatever the source, it went away when I started supplementing hydrochloric acid (HCL – stomach acid).

I also had some issues with feeling a tightness in my chest that went away when I started supplementing HCL.

My mental capacity is as good as it was before I got floxed. It may even be better than it was pre-flox. I had no interest in biochem before I started researching how fluoroquinolones work – now I read biochem articles for fun, and they’re making me smarter. Also, my writing has gotten better – which is nice.

My energy, endurance, flexibility and strength have continued to improve. It’s difficult to tell if I am capable of as much physical activity now as I was before I got floxed for a couple of reasons. First, I am a bit out of shape. I have an office job so I sit for 8 hours a day. That’s not good for anyone’s physical fitness. Getting floxed certainly didn’t help, as it left me completely sedentary for a while and semi-sedentary for a while after that. Second, I was in really excellent physical condition before I got floxed. I’m not sure how fair it is to compare myself to how I was 2.5-3.5 years ago because I was really fit at that point in my life. Anyhow, those are details. My point is that I’m doing well physically. I can keep up with my boyfriend (who has never touched a fluoroquinolone) while hiking, swimming, etc.

I still struggle a bit with my motivation. I felt like cipro stole my “give a damn.” I’m very passionate about exposing the dangers of fluoroquinolones, and about helping people through fluoroquinolone toxicity, but I still struggle to “give a damn” about other areas of my life. It’s getting better though.

My level of fearfulness has subsided over the last year. (It had actually improved tremendously a year ago when I wrote my story – it was horrible when I first got floxed – I was terrified.) It has taken a long time for me to convince myself that this isn’t going to kill me. I can’t say that the fear about the consequences of the cellular damage done is completely gone. But I can say that I feel good right now. It’s not going to kill me today. Today, I’m doing well.

Diet – I am not on any specific diet. I avoid junk food but other than that, I eat whatever. Food does affect how I feel, but I don’t think that it affects how I feel any more than it did before I got floxed.

Supplements – I’ve switched out my supplements a bit. I still take iron (Pur Absorb 5 mg/day) and I still think that it helps me a lot. I also think that magnesium (250 mgs. Chelated mag/day) helps me. Lecithin helped to clear my brain fog. Hydrochloric acid (HCL) helped to get rid of my nausea and heartburn. I also take a fish-oil supplement, chlorella, glucosamine, vitamin D3, vitamin K2, coenzyme Q10 and a probiotic.

Food Supplements – These supplements are actually food, so I’m putting them into a different category from the supplements. I think that all of them have helped me a lot. Brewer’s yeast – it’s full of B vitamins, amino acids, trace minerals and has things like uridine and iodine in it that are helpful. I think that brewer’s yeast has helped me a lot. Cod liver oil – full of good fats. Raw crushed garlic – for the thiamine and other nutrients. Beets – they make me feel better (nitric oxide??) – do NOT get scared when you pee/poo purple after eating beets.

Exercise – I still find pilates, swimming and walking to be very therapeutic. I haven’t been as diligent in sticking with them this year as I was the year before.

Meditation – I still think that meditation is a wonderful thing for everyone to do. I have gotten horribly lazy about doing it myself.

Acupuncture – I go to my acupuncturist about once a quarter now. I was going at least once a month previously.

Staying off the internet – I’ll give myself a big fat F- on this one. Being involved in floxie stuff over the internet doesn’t induce anxiety for me any more though – so I don’t think that it’s unhealthy for me that I concentrate on it too much.

Having a positive attitude – I think that I’m still doing pretty well with this one. It has been wonderful and touching to have a group of positive people commenting on this site – letting their fellow floxies know what they know – and everyone encouraging each other and having faith in the notion that this too shall pass. I thank everyone who has supported a floxie through their time of need with a positive attitude and/or words of wisdom.

As I have gotten healthier and healthier, I have become less diligent about doing the things that helped me to get to a place of health. It would probably be better for my continued health if I was more diligent about sticking with them. Oh well. I think that it’s relatively normal to get lazy about doing the things that you did to get healthy once you have reached a point where you feel healthy enough.

I consider myself to be 99-100% recovered.

I am very, very, very lucky.

I wish luck, healing and recovery for all of you! I know that a complete recovery is not possible for everyone, and, well, read this about partial recoveries – https://floxiehope.com/2014/03/05/redefining-recovery/. I like the quote at the end of it, “Healing doesn’t mean the damage never existed. It means the damage no longer controls our lives.” If a full recovery isn’t possible, I wish you a recovery in which the damage no longer controls your life.

I am incredibly grateful for everything that I have gained in the last year. This site has reached more people, and touched more lives, than I could have possibly imagined a year ago. More people have read, and cared about, my healing story than I ever could have imagined. I hope that it has helped you. I hope that this follow-up, letting you know that the improvements have continued for me, give you even more hope for your own healing.

Xoxo

-Lisa

 

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Six Word Essays about Fluoroquinolone Toxicity

Following are 6-word essays about fluoroquinolone toxicity – an adverse reaction to Cipro, Levaquin, Avelox or other fluoroquinolone antibiotic – written by people affected by fluoroquinolone toxicity.  Having only six words with which to communicate a message forces people to be succinct.  These essays are succinct and they are poignant.  They express the pain, frustration and devastation that comes with getting poisoned by a fluoroquinolone.

I don’t tweet, but apparently the hashtag #sixwords is a popular one.  If anyone who reads this who is into tweeting can please tweet any of the 6-word essays that resonate with them to both #sixwords and #fqtoxicity, your help will be greatly appreciated!  (Or, if you want to, please feel free to tweet this whole post.)  Thank you!

Six Word Essays About Fluoroquinolone Toxicity

Roses are Red, Fluoroquinolones are Poison

Ciprofloxacin:  Another way of saying death.

My doctor said Cipro would help.

My medical necklace says “NO Fluoroquinolones!”

I didn’t consent to this shit!

Climb the Rockies? Can’t take Cipro.

Before Cipro, my career was great.

Discover disability income by taking Cipro.

Cipro did not heal, it harmed.

All antibiotics are not the same

Cipro: my living nightmare through hell.

Cipro: best cure for loving life!

Bayer with me, I’ve been floxed.

Took Levaquin, now I can’t walk.

Fluoroquinolones – chemo drugs masquerading as antibiotics

Took Avelox, now I can’t think.

Bayer is corrupt. Bastards poisoned me.

LIE: Levaquin hurts only the elderly

Kevorkian got life. Bayer got money.

Just one pill can unleash hell!

Need a change? Take Cipro twice.

Fluoroquinolones ruined my career and life

Cipro a life of living HELL

Torn tendons.  Going blind.  NOT fine.

With generic Fluoroquinolones you can’t sue

Fluoroquinolones= Life altered never the same

Five Levaquin= healthy life nearly destroyed.

Time brings recovery and dreams rebuilt

Fluoroquinolones, designed antibacterial drug, kills people.

No one knows how fluoroquinolones work

Anthrax would have been much quicker.

Fluoroquinolones, the drugs that keep taking.

This is what poisoning looks like

Cipro attacks bacteria and your life.

One-stop shopping body damage, take Cipro.

Is this medicine in the Chemo?

No FQ prescription without infection Please

My feet hurt.  I can’t think.

The tests say it’s not real

Life taken away by Antibiotic Levaquin!

Doctors can poison you.  Stay away.

Levaquin tarnished Golden years beyond repair!

Mystery illness?  Look at your antibiotics.

Doctors  – STOP DOING THIS TO PEOPLE!

Fluoroquinolones are all huge mind blowers.

Fluoroquinolone toxicity – this is not okay!

This situation is ridiculously fucking stupid

Forevermore climbing out of my coffin

Please stop poisoning the American people.

Cipro destroys all connective tissues, disabled.

Life before Cipro J  life after Cipro L

Age 36 feel 100 thanks Cipro

I fucking hate the poison LEVAQUIN

Fluoroquinolines woke me up, Big Pharma

Southern Belle caught in Levaquin Hell

Fluoroquinolones have to be FDA retested

Keep fluoroquinolones for yourselves, Big Pharma

For your safety say No Fluoroquinolones

Levaquin cripples/disables young healthy athletes.

Levaquin is a portal to hell.

levaquin: How could doctor prescribe poison?

Taking fluroquinolones is playing Russian roulette.

Visit doctor get levaquin; the END.

My doctor quit using them. Yay!

Fiendish floxie fortune found friends forever!

Ten days Levofloxacin, five months bedridden.

Cipro levaquin Avelox Danger Danger Danger

Cipro Levaquin Avelox Top Chemical Reactors

One little pill ruined his life

Levaquin hits market; mystery ailments rise.

My wasted Toxic Body By Levaquin!

Levaquin: perfect poison masquerades as antibiotic

Got mitochondria? Kill them with levaquin!

Levaquin changed my fucking language ha!

Levaquin/Cipro: Big Pharma’s stealth bombs

Fluoroquinolones : population control in little pills

FDA lets levaquin mutate your DNA!

Levaquin has taken away my strength.

Fluoroquinolones: Head to Toe Super Toxicity

Need Skull and Crossbones? That’s Fluoroquinolones

Bayer profiting over your dead body!

Selling Levaquin because illness equals profits

Levaquin Restyled My Body, Head, Hair

Cipro / Levaquin destroyed my health forever

Want fibromyalgia? Take levaquin and watch!

Look at the mitochondria you fools!

Cipro! Because Bayer wants sick people!

Recovering ever so slowly thank God

Levaquin: your pill to rapid ageing!

SLUT here, Southern Lady utterly toxic!

Crippled overnight? Did you take Levaquin?

The Fluoroquinolone Train Destination: PURE HELL

Thank you, Levaquin, for the Disaster!

I will recover – just watch me

My doctor mutated me with Levaquin!

I didn’t consent to genetic modification!

Levaquin forced Bugs Bunny to retire.

Humpty Dumpty got poisoned by Cipro

Cipro didn’t kill me.  I’m alive.

Big Pharma is careless with chemo

Fluoroquinolone Antibiotics damage tendons, nerves, DNA

Crimes against Humanity continue; seemingly unstoppable!

Levaquin: watch your life fade away!

Levaquin mutant seeks healthcare, doctor runs.

Levaquin flushes Hippocratic oath down drain!

Criminals get free pass. Thanks FDA!

Doctor poisons patients. Calls patients crazy.

FDA grants Bayer permit to poison!

Floxies win war against criminal corporations!

Cipro, Levaquin, Avelox FQ you up!

I will never be the same!

Life’s a bitch, then you die.

Cipro, a CHEMO drug, ….disabled me!

Levaquin, the beginning of the end.

Body blowing mind altering antibiotic lie!

Know what meds not to mix

Fluoroquinolones – stealth weapons of mass destruction

Fluoroquinolones – poison comes in many disguises

Big Pharma is not your friend

Floxie friends work together through adversity

Fluoroquinolones – the biggest medical travesty ever

Never give up, never give in

 

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Posts Written by Floxed Friends

Many of my floxed friends have blogs.  Links to their blogs can be found on the “Links and Resources” page of this site.  I thank them very much for telling their story and for their words of wisdom!  All of you are very much appreciated!

Some of my floxie friends have also submitted posts to web sites that are not devoted to fluoroquinolone issues.  I wanted to keep track of them, so I’m putting them in this post.  This post will be updated as posts are added.  If you want anything to be listed on here, please let me know through the “Contact” link.  Thanks!

Emily Dodson-Murphy, “How Many Doctors Does it Take to Fix a Shower?  A Tale of Fluoroquinolone Injury” on Hormones Matter

Emily Dodson-Murphy, “Becoming the Person I Hoped I was” on Hormones Matter

Debra Anderson, “Glabrata – A Deadly Post Fluoroquinolone Risk You’ve Never Heard About” on Hormones Matter

Patti Ireland, “The Doctor Said Not to Worry About Levaquin Warnings” on Hormones Matter

Bobbi Jo Stellato, “A Fragmented Balance: Life Post Cipro” on Hormones Matter

Janet Murray, “Fluoroquinolone Neuropathy Feels Like Acid Burning and Electricution” on Hormones Matter

Destini Bates, “A Long and Complicated History Topped by Levaquin: Please Help” on Hormones Matter 

Floxed, “Cipro Ain’t Sexy: Fluoroquinolones Tanked my Sex Drive” on Hormones Matter

Erin Wilson, “Fluoroquinolone Recovery Brought to you by Nature” on Natural News 

Erin Wilson, “Levaquin, Cipro, Fibromyalgia and Leaky Gut – The Missing Link” on Natural News 

Erin Wilson, “Levaquin and Cipro’s ‘Dirty Little Secret’ Sexual Dysfunction” on Natural News 

Erin Wilson, “Levaquin and Cipro – The Descent into Madness” on Natural News 

Erin Wilson, “NEW FDA WARNING for Cipro, Levaquin, Avelox – Permanent Peripheral Neuropathy – Mixed Emotions” on Natural News

Erin Wilson, “The Reality of Fluoroquinolones – Or, How I Became Disabled Over Night” on Natural News 

Erin Wilson, “Fluoroquinolone Toxicity for Dummies” on Natural News

Andrea, “Did I Get Floxed?” on MTHFR Living

Ruth Young, “In the Valley of the Shadow of Death” on Pictures of Cats

Sarah E. Flynn, Ph.D., “Postpartum Fluoroquinolone Toxicity” on Hormones Matter

I have many posts on Collective Evolution and Hormones Matter as well.  I thank Hormones Matter, Collective Evolution and Natural News for highlighting the dangers of fluoroquinolones!

Please let me know what needs to be added to this post.  Thanks!

 

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Cipro Stole my Libido

Hormones Matter Logo

Also known as, “Post Fluoroquinolone Sex and Libido.”

Here is the link – http://www.hormonesmatter.com/post-fluoroquinolone-sex-libido/

Loss of libido, and other sexual side-effects, are common for floxies.  Just one more thing these nasty drugs take away.  It’s not okay.

 

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Keep Going

A friend wrote this to me –

Dear Lisa,

I don’t believe I am going to get better, and I don’t know what to do anymore. This feels like a nightmare from which I cannot wake up. I know people say to stay positive, but I don’t know how, especially when, every day, I read comments in the group with people who are several years out, and have not improved. I know people say everyone is different, but after more than a year, I have a feeling I am one of the unfortunate few that never recover. What should I do?

Here is my response –

Dearest friend,

I think that you should just keep going. That’s all that is really required of you, or anyone else – just not giving up. In not giving up you are being hopeful. Eventually, it will become easier to not give up. Eventually, it will be effortless. At least that’s what I hope for you.

I recently got an email from someone who recovered after 8 years. 8 years is frightening, for sure. But she recovered. It did happen.

I encourage you to find something that makes you feel just a little bit better. Maybe that’s sunshine, or funny movies, or acupuncture, or magnesium, or whatever – and do that thing every day until the little incremental improvements add up.

And just don’t give up.

Try to believe that it will get better. It’s okay to not always believe that you will improve. But as long as you’re not giving up, things will change. Maybe they will change for the better. I hope that for you!

That’s what I think you should do. I hope that what I said doesn’t seem to trivialize your situation in any way. I know that it’s scary and I know that fear that it won’t end is normal. I think that just continuing on is difficult sometimes. That’s what I suggest you do though.

Love,

Lisa

Post Script To All:

I wish you all healing, love, happiness, recovery and everything else that your heart desires.  I’m sorry that this whole ordeal happened to you.  I’m sorry for the pain.  I’m sorry for the suffering.  I’m sorry for the fear and the hopelessness.  I hope that it all passes.  I hope that you find your way back to health and happiness.

I know that sometimes it feels like it won’t pass, like you’re stuck in a hole and will never be able to crawl out of it.  It will pass though.  I can’t promise that you will recover completely, or that you’ll get your former abilities, or yourself, back.  But I can promise you that this difficult moment will pass.  It will change.  Eventually you will stop falling down the hole, and you will start to improve; to emerge.

When you emerge, you’ll have all sorts of gifts that you didn’t ever want.  Empathy and compassion for those with chronic, mysterious diseases, patience for yourself, faith in your resilience, etc.  Those things are possible.  They’re down that hole – look around and you’ll find them.

I am inclined to write trite sayings about this, and I’m not sure if they help or hurt.  Hang in there.  It will pass.  Breathe.  And just keep going.  That is my advice.

And know, in every part of your being, in every breath you take, that you are loved.

It helps.  I swear, it does.

Love,

Lisa

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The Quinolone Vigilance Foundation (QVF)

QVF_logo_high_res

There is a non-profit, charitable foundation devoted to funding research and raising awareness about the dangers of fluoroquinolones and fluoroquinolone toxixity.  It is called The Quinolone Vigilance Foundation (the QVF) –  www.saferpills.org.

Following is some information about the QVF:

History and Purpose

The QVF was founded by 4 floxies in 2009. Their goals were to review the existing scientific literature that addressed adverse reactions to fluoroquinolones, recruit and network medical researchers, and stimulate new research into fluoroquinolone toxicity.  It became apparent that a national non-profit was necessary to establish the professional credibility of the QVF and so that the QVF could act as a vehicle to raise the funds needed to drive scientific research.  The QVF exists to stimulate and fund university-level peer-reviewed research that will inform the medical community about severe adverse reactions to quinolones/fluoroquinolones.

Since April, 2012, the QVF has been registered as a charitable organization, it has received its EIN from the IRS, registered with the State of New Jersey (where the QVF is headquartered), registered with the proper federal agencies, and written up and filed Articles of Incorporation.  In April 2013, the QVF filed for 501(c)(3) status with the Internal Revenue Service, where its status as of 01/29/14 is pending.  The QVF can operate as a non-profit while its 501(c)(3) status is pending.   It is anticipated that receipt of the QVF’s 501(c)(3) status will be received in 2014.

While the QVF does do advocacy, the main focus of the foundation is research.  When research contracts are entered into by the QVF, the QVF officers sign confidentiality agreements, which note that the research cannot be discussed publically.  For this reason, much of what the QVF does is behind closed doors.  The officers of the QVF ask for understanding among floxies in realizing that even though much of what goes on in the QVF cannot be public, much is going on.  Per Rachel Brummert, Executive Director for the QVF:

“My day includes talking to the medical community, soliciting other major universities to do studies, reaching out to other agencies, making phone calls and doing e-mails.  We give up our weekends, evenings, holidays, etc. to do our jobs, and we do not get paid for what we do.  In everything we do, we keep in mind that the floxie community relies on us, and we are passionate about what we do for that very reason.  We understand that it is frustrating that we cannot share more about what we do. We share that frustration, however, we do it to protect the community and the people we work closely with. Unfortunately, research is slow, and expensive. We are fully committed to doing what is necessary to fully fund the studies we initiate so that we can answer the questions of “why did this happen” and “how can we fix it”. The floxie community deserves those answers.”

As a research organization, QVF’s mission is to:

•    Network medical professionals and researchers regarding adverse reactions to quinolone antibiotics.

•    Foster, initiate, and direct fundamental research to discover underlying toxicity mechanisms.

•    Fund research that will produce the most promising results.

•    Translate new discoveries into effective medical practices and therapies to help alleviate individual suffering.

•    Develop and apply discovered knowledge to educate the medical community and inform best practices for public health.

 

Information about some of the research that the QVF is involved in can be found through the following links:

Rochester Study: http://www.saferpills.org/analysis-of-fluoroquinolone-toxicity-in-the-central-nervous-system-cns/

Dr. Mark Noble site: http://www.urmc.rochester.edu/people/23095977-mark-david-noble

UCSD Study: http://www.fqstudy.info/Fluoroquinolone_Effects_Study/Welcome.html

Dr. Beatrice A. Golomb’s C.V.: http://www.fqstudy.info/Fluoroquinolone_Effects_Study/About_Dr._Golomb.html

 

Advocacy and Outreach

Though the QVF is primarily focused on research, some advocacy and outreach activities have been conducted.

In November, 2012, the QVF partnered with another foundation to do a 5k walk/run, where awareness materials such as rack cards, wrist bands, awareness cards, etc. were distributed.

In November, 2013, Matt Sorrell, husband of QVF Treasurer Christina Mathos-Sorrell, ran the NYC marathon on behalf of the QVF.  Matt was able to raise money for the QVF and increase awareness about fluoroquinolone toxicity through running the marathon and collecting donations.

In December, 2013, The QVF did an online auction, put together by Executive Director Rachel Brummert and QVF fundraising director Michelle Fewer.

The QVF plans to hold the events listed above annually, and discussions are being conducted about other ways to raise funds.

TheQVF also sells merchandise.  The QVF store can be found at www.cafepress.com/quinvigil.

 

QVF Staff/Volunteers

The founders of QVF reached out to fellow victims of fluoroquinolone toxicity to establish a presence in the online community. The board of directors was created, and ambassadors/advocates from all over the world began volunteering to help. Currently, the QVF is an international organization represented in six countries: the United States, Canada, Ireland, the United Kingdom, Belgium, and Australia.

The current volunteer staff positions are as follows:

Board

Rachel Brummert – Executive Director and President of QVF

Matthew Arnold – Vice President

Alice Broussard – Corporate Secretary

Christina Manthos -Sorrell- Treasurer

Michelle Fewer – Fundraising Director

Dr. Deanna Minkler – General Board Member

 

Non-board

Donna Schutz- Ambassador Coordinator

Lisa Bloomquist – Communications Director

Lori Boz- Consultant

 

More information about the QVF can be found on www.saferpills.org.

 

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Farewell my Friend. May Peace and Love be With You.

Creek

A Floxie friend called me last week to say goodbye. She had received a terminal prognosis from a couple of doctors and she was going into hospice care for her last hours/days/weeks/months on earth. She is in her early 50s. She has been dealing with fluoroquinolone toxicity, and some compounding issues that stemmed from being simultaneously administered Cipro with steroids, for about 13 months. She has become so weak, so poisoned, and so overwhelmed physically by her illness, that she can’t fight back any more. She will not last much longer.

I don’t know what to say. I don’t know what is appropriate in this situation. I wish her peace. I hope that she and her loved ones get the opportunities to say what they need to say to each other. I hope that she feels loved. I hope that she isn’t in pain.

I really, really, really wish that none of the physical and mental deterioration that she has experienced over the last 13 months had happened. There is nothing that is okay about her dying from a fluoroquinolone shutting down her body. It’s tragic. Absolutely tragic.

She was healthy, happy and beautiful 13 months ago.

Now she is going into hospice care.

It is just so, so sad.

I don’t think that anyone ever knows the right thing to say when faced with death. Concentrating on peace, love and coming to terms with the situation seems like the best, and right, thing to do. But, in our conversation, she did mention that she wished that she had the strength to tell her story, to speak out against those who poisoned her, and to warn others about the deadly combination of fluoroquinolones and steroids. She doesn’t have the strength to do so. But I do. She, and all of the other people who are hit hard by fluoroquinolone toxicity, are the reason that I do what I do. I write for them. It’s not about Lisa not being able to dance in heels for a while. It’s about those who lose their health, those who are in chronic pain, those who are too weak to fight back, and those who die as a result of fluoroquinolones. I write to scream about their pain and their losses. There is nothing that is okay about their pain (or my pain, as trivial as it is in comparison). There is nothing that is okay about body-wide shut-down and death being the result of taking an antibiotic.

I also write on Floxie Hope to let people know that their path is not necessarily one of terminal illness. Many people make a full recovery. I hope that everyone reading this recovers. But it would be false and disingenuous to pretend like everyone recovers. Not everyone does. Some people die from fluoroquinolone toxicity. It is tragic and it is wrong.

I hope that this little tribute to my friend brings her some peace and happiness. I acknowledge her struggle, her pain and her sickness. I don’t know what I can do to stop the horrible tragedy of people being hurt, and dying, from fluoroquinolone toxicity. But speaking out is a step. It is something that I am capable of doing and I hope that it helps.

May she be at peace. May she know, really truly know, that she is loved.

 

 

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Gulf War Illness Tied to Cipro

The connection between Gulf War Illness and Fluoroquinolone Toxicity is well accepted among “Floxies,” but the connection hasn’t been made for most of the general population, or even most of the Gulf War Veteran population.  I wrote this post with the hope that the issue would be pushed in both the general and the Veteran populations.

http://www.collective-evolution.com/2014/01/06/gulf-war-illness-tied-to-cipro-antibiotics/

http://www.activistpost.com/2014/01/gulf-war-illness-tied-to-cipro.html

http://naturalwellnessreview.com/2014/01/gulf-war-illness-tied-to-cipro-antibiotics/

http://beforeitsnews.com/alternative/2014/01/gulf-war-illness-tied-to-cipro-antibiotics-2867166.html

http://banoosh.com/blog/2014/01/07/gulf-war-illness-tied-cipro-antibiotics/

http://polishgazette.com/?p=96735

http://thenwo.net/health-and-science/gulf-war-illness-tied-to-cipro-antibiotics/

There are definitely multiple factors at work in leading to the sickening of Gulf War Veterans. Many of the factors probably compound each other. I hope that the complexity of GWI isn’t used as an excuse to not get to the bottom of it. The Vets deserve answers. I wish that those who have officially been investigating GWI ($340 million invested into determining a cause and no resolution for the Vets) would look at Cipro. I don’t know why it hasn’t even made the list of compounding factors yet. I trust that it will soon.

 

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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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How I Lost my Faith in Scientists

Hormones Matter Logo

I just want scientists to step up and scream about what they know.  Some of them, maybe many of them, fully realize that fluoroquinolones are dangerous.  Where is the outrage?  Where is the change?  I am deeply saddened by this list.  Thank you for reading the post!

http://www.hormonesmatter.com/lost-faith-scientists/

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Doctor Referral List

Several people have asked me for referrals to doctors who specialize in Fluoroquinolone Toxicity.  Unfortunately, there are very few doctors who claim any expertise in Fluoroquinolone Toxicity (I say claim because even the most in-depth medical journals say that the mechanisms through which fluoroquinolones work, and sometimes don’t work, are unknown at this time).  But there are doctors who have read-up on fluoroquinolone toxicity, who are familiar with the issues of Floxies, who are willing and able to listen and to help, when possible.  Here is a list of the doctors who have been identified thus far –

 

https://docs.google.com/spreadsheets/d/10HdvKMTV1YGPyubf9KCYivtG8i2jo8w1kZjBDjNdt38/edit#gid=7

 

If you find a good doctor that you like who you would like to refer other Floxies to, please add the doctor, or other medical professional that helps you, to the referral list –

 

https://docs.google.com/forms/d/e/1FAIpQLSeSLS4uxb4P8g05Jo7MomnuLle9qGaIPValUL22v-AKwuXy6Q/viewform

 

I did not create these google documents.  I want to thank the person who did (I’m not sure who that person is, sorry).  Thank you for putting this together!

 

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QVF Auction 2013

Starting on Monday December 2, 2013, the Quinolone Vigilance Foundation (QVF) is holding an online auction to help raise money for research into why Fluoroquinolone Toxicity happens, and how to help treat and cure it. More information about FQ Toxicity, and the research that is being conducted can be found at www.saferpills.org.

The online auction will be held on Facebook. Please join the auction through this link – https://www.facebook.com/events/405080019624946/?ref_dashboard_filter=upcoming&source=1 If that doesn’t work, please search for “Quinolone Vigilance Foundation Auction 2013” on Facebook. If that doesn’t work, please send me a message and I’ll invite you (my email address is lisa.bloomquist@yahoo.com but I prefer to receive messages through facebook.)

Items such as handmade jewelry, non-handmade jewelry, designer Coach bags, antique books, regular books, a handmade scarf, tee-shirts that were sent from Australia, posters, flower arrangements, etc. will be auctioned off.

To bid on the items, please follow these steps:

  1. Join the auction’s facebook site
  2. Write in an amount that you want to bid on an item – in the comments section below the item (auction items will be posted on the event site starting on Monday December 2, 2013. Each item will remain up for approximately 48 hours.)
  3. Pay for your items. You can pay either through the QVF web site – http://www.saferpills.org/donate-2/ or through paypal to Donations@saferpills.org.
  4. Someone from the QVF will contact you to get your address and your items will be sent to you shortly thereafter.

Please share this event with your friends and family. The QVF has a great assortment of contributions that will be auctioned off. With Christmas/Hanukkah/Festivus coming, this is a great way to support an important cause while shopping for your loved ones.

Thank you very much!  

 

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How Pharmaceuticals Came to be the 4th Leading Cause of Death in America

Collective Evolution Logo

Post on Collective-Evolution –

http://www.collective-evolution.com/2013/11/20/how-pharmaceuticals-came-to-be-the-4th-leading-cause-of-death-in-america/

Real Farmacy published it as well –

http://www.realfarmacy.com/how-pharmaceuticals-came-to-be-the-4th-leading-cause-of-death-in-america/

Don’t go down the path described.  It’s not a pretty picture.

 

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Please Take These Surveys

ANYONE who has taken a fluoroquinolone (Cipro, Levaquin, Avelox, Floxin, etc.), please take the time to complete these surveys:

http://www.hormonesmatter.com/fluoroquinolone-antibiotic-side-effects-survey/

and

http://www.fqstudy.info/Fluoroquinolone_Effects_Study/Welcome.html

Data is important.  It is important for getting the symptoms of Fluoroquinolone Toxicity recognized.  It is important for making connections between fluoroquinolones and the variety of ailments that are brought on by fluoroquinolones.  It is important for assessing the real risks and dangers of these drugs.

When you have data, you have numbers instead of stories or anecdotes.  Stories and anecdotes are important, but they are not appreciated or paid attention to like numbers.  Anyone who is part of the “Floxie” community knows that, for example, losing the ability to sweat is part of floxing, but we don’t know how many people lose their ability to sweat, or feel anxious, or suffer from insomnia or experience an increased heart rate, etc., so we need numbers  – we need data to tell us that information.  These surveys will give us some data.  Your help in completing them, and passing them on to fellow Floxies, will be GREATLY appreciated.

THANK YOU to any of you who take the time to complete these surveys.

In order to draw any statistically significant conclusions from the Lucine Health Sciences survey, a minimum of 500 people need to complete the survey.  The survey being conducted by UCSD is seeking 10,000 respondents.  We all know that there are thousands of people who have been adversely affected by fluoroquinolones.  However, getting them connected with these surveys may not be easy.  I would like to ask for your help.  Please forward these surveys to as many people as you know who have taken a fluoroquinolone – ESPECIALLY those who are not involved in the Facebook Floxie groups (because facebook is the primary way that I am advertising the existence of these surveys so it is likely that those in the Fluoroquinolone Toxicity facebook groups already know about this survey).

A huge amount of thanks and appreciation should go to Chandler Marrs, Founder of Lucine Health Sciences, Inc. and www.hormonesmatter.com.  She created the Lucine Health Sciences survey.  She has spent hours creating this survey and she will spend hours sorting through the data and drawing statistical conclusions from it.  If you have any questions or concerns regarding the survey, please don’t hesitate to contact her at info@hormonesmatter.com.  If you would like to donate to Lucine Health Sciences / Hormones Matter as a sign of your appreciation for Dr. Marrs’ hard work, donations will be greatly appreciated.  You can donate via credit card or paypal using this link – http://www.hormonesmatter.com/crowdfund-hormones-matter-buy-unsubscription-now/

This post will answer some frequently asked questions about the Lucine Health Sciences survey – http://www.hormonesmatter.com/fluoroquinolone-antibiotic-side-effects-survey/

A huge amount of thanks and appreciation should go to Dr. Beatrice A. Golomb and her colleagues at the University of California – San Diego for their efforts as well.  They would also appreciate donations.  Instructions on how to donate to their efforts can be found here – http://www.fqstudy.info/Fluoroquinolone_Effects_Study/Contribute.html

Everyone – MY SINCEREST THANKS!

🙂

Lisa

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Surviving Fluoroquinolone Toxicity

One of my first symptoms of Fluoroquinolone Toxicity was that my hands and feet swelled up and were incredibly painful.  My feet hurt more than my hands.  I could type without pain, but walking was agony for a while.  I wore Crocs everywhere for about 9 months because they were the only shoes that didn’t make my feet scream in pain.  Because painful feet were the worst physical symptom that I had, I told myself that if I could ever dance in high-heels again, I would consider myself to be healed.  About 18 months after I got Floxed, I could dance in high-heels again.  After that, I wrote my recovery story and started Floxie Hope.  I considered myself to be 99% of my pre-sickness capacity.

I still had some lingering symptoms though.  My memory and reading comprehension were still diminished.  My heart rate was increased.  I didn’t have much endurance.  My bladder control left a bit to be desired.  I could deal with each of these things though.  They weren’t that big of a deal.  Lots of people who consider themselves healthy deal with feeling worse than I did.  I certainly wasn’t sick any more.

But the fact that my heart rate was increased, and I suspected that my cardiovascular system was adversely affected, scared the crap out of me.  I knew that my autonomic nervous system had been adversely affected, hence the heart rate and bladder issues, and the notion that the FQ damage to my autonomic nervous system may have damaged me fatally was stuck in my head.  I couldn’t seem to shake the notion that the damage that Cipro did was eventually going to lead to my death.  How could it not lead to my death?  Cipro damaged my AUTONOMIC NERVOUS SYSTEM.

However, I suspected that being convinced that Fluoroquinolone related issues were going to kill me was part of the process, part of getting sick and even part of getting better.  I considered the notion of my impending death from FQ toxicity to be a symptom, just one more thing to get over, and that once I no longer thought that I was going to have a heart attack from it, that I would consider myself to be 100% better.

I think I’m there.  I think that I’ve finally disabused myself of the notion that this is going to kill me.  I think that I may actually live just as long as I would have if I had never taken Cipro.  It’s possible.  Of course, it’s also possible that I will indeed have a heart attack in my 40s that is a direct result of the damage that Cipro did to my cardiovascular system.  But I’m leaning significantly more toward the possibility that I will live a long and full life.  As they always say, you (I) could get hit by a bus tomorrow.  None of us ever has any idea what the future may hold.  But it’s really nice to have finally let go of the notion that this is going to kill me.  It was my last remaining symptom.  Now I can say that I’m 100% recovered.  The last 664 days (12/2/11 through 9/26/13) were rough, but I think that I made it to 100%.  Cheers to that.

 

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