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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