Tag Archives: healing from fluoroquinolone toxicity

Floxie Hope Podcast Episode 15 – Richard

Richard Floxie Hope Podcast

I had the pleasure of interviewing Richard for episode 15 of The Floxie Hope Podcast. Please check it out –

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

http://www.floxiehopepodcast.com/episode-015-richard/

At the age of 23, Richard was “floxed” by a single pill of Avelox (while he was also on NSAIDs). For the following 4 months he was acutely ill, and for ten months following that he was slowly recovering. Richard goes over his journey through fluoroquinolone toxicity in the interview – what helped, what hurt, and what he learned along the way. He has excellent advice to share with all of you.

Thank you very much for listening!

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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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Healing is a Journey

One day I was doing Crossfit and the next I could barely walk.  The flox bomb went off in me quickly.  I had a slightly delayed reaction – my body exploded 2 weeks after I finished taking ciprofloxacin (when I started taking ibuprofen and when I got my period – both the contraindicated NSAID and the hormonal shifts probably played a role) – but once the fuse was lit, the bomb detonated quickly.  Suddenly I was unable to do the things I used to do with ease.  I was barely able to walk, much less hike up a mountain.  I was barely able to think, much less go to school while working full-time.  

In some ways I’m grateful that I didn’t fall apart gradually.  If my health had declined slowly I may have thought that I was just getting old, or I may have thought that I was coming down with one of the named mysterious diseases like fibromyalgia or CFS/ME.  I did think I had an autoimmune disease, not knowing whether or not they could strike a person suddenly.  All of the tests for autoimmune diseases came back negative though, and it wasn’t long before I realized that my symptoms were those of fluoroquinolone toxicity.  Because I went from well to sick so suddenly, it was not only plausible, it was clear that I was poisoned.  

But having my health suddenly stolen from me was terrifying, traumatic and, frankly, it felt unfair.  I had worked out regularly.  I had always eaten decently.  I was only 32.  I was healthy and strong.  How could I get poisoned?

The thing that felt most unfair about the situation was that there was no magic pill to put me back together again.  A pill could mess me up, but there wasn’t a pill to heal me.  I could suddenly be sickened, but I couldn’t suddenly get well.  Doctors could prescribe pills that could tear apart my cells, but they didn’t seem to have any advice for how to put my cells back together.  

It sucked.  

It sucks, and is unfair, that there isn’t a pill (whether it be a pharmaceutical or a supplement) that can reverse the damage done by fluoroquinolones.  It sucks, and is unfair, that the damage can be done suddenly, but the repair – the healing – takes time.  

As unfair and sucky as it is, the process of healing is not instantaneous – it takes time.  Healing is a process that requires patience, compassion, forgiveness, surrender, hard work, luck, nutrition, movement, tenacity, support, and love, among other things.  Perhaps the time healing takes is an opportunity to gain those things.  We all need more patience, compassion, forgiveness, surrender, hard work, luck, nutrition, movement, tenacity, support, and love in our lives.  Getting poisoned is a lousy way to come by those things.  But while you’re going through the trenches of fluoroquinolone toxicity, I encourage you to look around for those silver linings.

It took me a long time to get over anger about my health being stolen from me by Bayer/Cipro.  I’m still not completely over it and maybe I never will be.  But finding some appreciation for the journey has been helpful.  It has been healing.  

Healing is a journey, and the journey is healing.  They go hand in hand.  

I have learned that lesson.  Perhaps it’s what the storm is about.

“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in. That’s what this storm’s all about.” -Haruki Murakami

 

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Meditation and Mindfulness to get through FQ Toxicity

Meditation and mindfulness were incredibly helpful in my journey through fluoroquinolone toxicity.

The benefits of mindfulness and meditation are often downplayed in recovery stories–and supplements, diet and exercise are focused on instead.  Supplements, diet and exercise certainly helped me, and many others, to get through fluoroquinolone toxicity.  But meditation helped me too, and I think that the roles of spiritual and emotional health in physical health and healing are under-recognized in our society; and that is reflected in many of the recovery stories.  Or… maybe I’m projecting and meditation and spirituality were important to me but they aren’t to everyone… that’s totally possible.  Still, I want to focus this post on the role that meditation and mindfulness played in getting me through fluoroquinolone toxicity because they were important parts of my journey.

Early in my floxing I took a class called Mindfulness Based Stress Reduction through my health insurer, Kaiser Permanente.  Kaiser Permanente wouldn’t offer a class like this unless it had health benefits, and meditation and mindfulness have been found to have amazing, unexpected, physical health benefits (including increased immunity – isn’t that crazy/interesting?).

The things that mindfulness and meditation helped me with were:

  1. It helped to get my anxiety under control. I can’t begin to tell you how important this was.  Anxiety can make everything worse and it’s easy to get into a destructive anxiety/stress/tension spiral when a bomb has just gone off in your body.
  2. Meditation helped me to be more kind and patient toward myself.
  3. Meditation helped me to forgive myself for what I was going through. I felt guilt and shame over being sick.  Neither guilt nor shame are useful in the least, and meditation/mindfulness helped me to get rid of both.
  4. Meditating brought home the point that everything passes. Even thoughts and emotions pass.  Pain passes.  Nothing is permanent.
  5. It helped with dysautonomia. My sympathetic/parasympathetic nervous systems were out of balance after I got floxed.  Meditating helped to get my cortisol levels down and my sympathetic nervous system back in line.
  6. I found courage, bravery and strength, which I badly needed, through meditation.
  7. I could see beauty and good in the world when I meditated. I felt like beauty and good in the world were stolen from me when I got floxed – meditation/mindfulness helped me to get them back.

I recently listened to a wonderful talk by Pema Chodron in which she was going over ways to overcome fear.  She noted that being mindful about fear was a way to get past it.  She advised that we examine and look at the things that make us uncomfortable–like fear, pain, and other “negative” feelings.  Even though all of us want to get away from pain, fear, discomfort, distress, etc., running from those things doesn’t seem to be near as effective as facing them, for getting over, through and past them.  In a mindfulness or meditation practice, you can sit with your fears and pain and face them.  Pema Chodron advises that you be kind and patient toward your fear and pain, and that its power will dissipate with the more loving kindness you give it.

It’s a bit hippy-dippy, and even counter-intuitive, I know.  But I love this stuff and it truly helped me immensely.

In her talk, Pema Chodron told a story of when she was going through a tough time and she approached her teacher, Chögyam Trungpa Rinpoche, for advice.  Chögyam Trungpa Rinpoche said that her life/problems were like she was standing in the ocean, and a big wave came by and knocked her in the sand.  After some struggling, the wave went back out and she was able to stand again.  Then, another wave came and knocked her down again.  But, the second time, she know that the wave will go back out and that she would be able to stand again.  It keeps happening like that.  Life is a series of waves that will knock your face into the sand.  BUT, after a while, the waves appear to be getting much smaller.

The waves of life–fear, uncertainty, pain, suffering, illness and everything else–will be much easier to overcome if you look at them.  If you face the waves you can decide if you’re going to jump over them, dive under them, plan for a place to land when they push you down, or some other plan of action.  Or, you can just know that waves will hit you and knock you around at times, but they will recede and you’ll be able to stand again.  Just having that realization/mindset is helpful.

I was playing around in a pretty wave-less bay when I got knocked down by Cipro.  I had no idea what hit me.  My face was in the sand and I was convinced that I was choking to death on the sea-water.  Meditating and mindfulness helped me to face the waves, and when I faced them, I could see ways to overcome them.  And, as Chögyam Trungpa Rinpoche said they would, the waves got smaller.

I truly think that the shifts in perception that I went through, largely as a result of mindfulness and meditation practices (with some other spiritual and religious things too), helped me to get through fluoroquinolone toxicity as much as anything.

It’s interesting that sitting still, observing your breath and attempting to overcome your ego, can be a tool for wellness.  It’s been a tool for health and wellness for centuries, but it doesn’t fit well within the Western Medicine paradigm for health or healing.  It is helpful though.  It’s a great and powerful tool that helped me immensely.  I hope that it works well for you too!

I took meditation and mindfulness classes which cost a little money, but were worth every penny.  You don’t have to take meditation or mindfulness classes though.  Meditating is FREE.

If you want some guidance, here are some links to guided meditations:

http://beyondmeds.com/2014/10/03/mindfulness-meditation/

http://www.samharris.org/blog/item/mindfulness-meditation

And here is Jon Kabat-Zinn discussing mindfulness:

 

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The Floxie Hope Podcast Episode 11 – Diego

Diego Floxie Hope Podcast

I had the pleasure of interviewing Diego Vasquez for Episode 11 of The Floxie Hope Podcast.

Diego is thoughtful and wise.  His perspective on his floxing journey is poignant and beautiful.  I very much enjoyed speaking to Diego and he even brought me to tears during the interview.  I encourage all of you to listen to this podcast and share it with friends.  Diego has an amazing, uplifting, inspirational spirit.  You will be sure to be touched by this interview.

You can read about Diego’s Journey here – https://floxiehope.com/diegos-story-levaquin-side-effects/

You can listen to Diego’s Journey through these links –

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

http://www.floxiehopepodcast.com/episode-011-diego/

Diego mentions that he is being treated for peripheral neuropathy by The San Antonio Neuropathy Center.  You can learn about the Center from this video –

 

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Breathing Exercises for Health

Breathing exercises are an easy, free, thing to do to improve your health post-flox.

According to the post, “18 benefits of deep breathing and how to breathe deeply,” the benefits of breathing exercises include:

  1. Breathing detoxifies and releases toxins
  2. Breathing releases tension
  3. Breathing relaxes the mind/body and brings clarity
  4. Breathing relieves emotional problems
  5. Breathing relieves pain
  6. Breathing massages your organs
  7. Breathing increases muscle
  8. Breathing strengthens the immune system
  9. Breathing improves posture
  10. Breathing improves quality of the blood
  11. Breathing increases digestion and assimilation of food
  12. Breathing improves the nervous system
  13. Breathing strengthens the lungs
  14. Breathing makes the heart stronger
  15. Breathing assists in weight control
  16. Breathing boosts energy levels and stamina
  17. Breathing improves cellular regeneration
  18. Breathing elevates moods

The claims in the article weren’t backed up by peer-reviewed sources, but it all seems reasonable enough. We have to breathe. It’s free. We may as well do it in a way that improves our health and well-being.

Bill notes in his fluoroquinolone toxicity recovery story that:

Since I had no explanation why ozone was working, I wondered if maybe all I needed was more oxygen.  When the ozone gas is mixed in with the blood, the blood turns from dull rust brown to bright red, as hemoglobin is supposed to do in the presence of oxygen.  I certainly wasn’t getting any exercise…  Could just breathing more be at least part of the answer?

I think it might just be.  I was able to leave off the cane completely within two days of when I started deep breathing.  The pain, balance problems, and mind fog didn’t go away completely at that point, but the change was nonetheless pretty dramatic.  I took the technique from a cheesy old Tony Robbins tape.  I don’t know how much of what Tony says on the tape is pseudoscience and wishful thinking, but I followed it anyway.

The procedure is pretty simple.  Breathe in, via nose, for a slow count of some number.  There’s no magic to this, just as much as you can hold.  I count to seven heartbeats before I’m full.  Apparently Tony counts to ten, but he’s also roughly the size and shape of Frankenstein’s monster.

Hold your breath for a count of four times how long it took to breathe in.  I count to twenty eight heartbeats, and Tony counts to forty, the freak.  Tony claims that this is the optimum amount of time for maximum oxygen absorption.

Then, slowly exhale COMPLETELY through your mouth, for a count of two times the amount of time it took you to inhale.  I can’t quite manage a count of fourteen, usually making it only to twelve or thirteen.  I have no clue how Tony makes it to twenty except to speculate about an extra lung, perhaps in his chin.  He claims that this maximum exhale stimulates the lymphatic system to flush wastes out of cells and eventually out of the body.

Do this between ten to thirty times per day.  I like to do it while driving.  The way I think about it, even if this has nothing to do with recovering from quins, it can’t hurt to try.

Here are the Tony Robbins Breathing exercises that Bill wrote about:

Some possible techniques are those breathing techniques developed by Dr. Konstantin Pavlovich Buteyko known as Buteyko breathing. Buteyko breathing is described in this video:

Here is some more good information on the background and benefits of Buteyko breathing:

I didn’t specifically do breathing exercises during my recovery, but I did find swimming to be immensely helpful. When you swim, you are forced to do breathing exercises.

I was recently chatting with Ruth, and she mentioned that her functional medicine doctor, Dr. Whitcomb, told her to play the flute often to encourage her to breathe deeply and properly, and to encourage healing. She said that playing the flute helps her to feel more calm and generally better.

Breathing exercises are safe, easy, free and can be helpful for floxies. I highly recommend doing some of the breathing exercises shown in the videos in this post, or swimming, or playing a wind instrument.

 

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Forgetting the Pain of Floxing

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

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

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

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

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

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

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

fluoroquinolone-lawsuit-banner-trulaw

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

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

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

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

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

 

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