Tag Archives: recovery from fluoroquinolone toxicity

Hope Heals and Unites

Over the past 3.5 years, this site has morphed and changed, and it has accumulated a lot of valuable information. It started out as a place to tell stories of recovery from fluoroquinolone toxicity. Over time, it became a repository for hundreds of articles about fluoroquinolones, and I started to write posts that focused on research. Fluoroquinolone toxicity became a puzzle that I wanted to solve, and many of the posts on this site are about that detective-work. I went to Washington D.C. in order to advocate for change in how fluoroquinolones are prescribed, and I wrote about those experiences. With that, this site became an advocacy site, and changes to medical and pharmaceutical policies were put forth. This site has become a supportive community, and I am grateful beyond words for the hundreds of people who have contributed more than 15,000 comments to Floxie Hope. It has grown, it has morphed, it has become more substantial and more effective with each post, article, and comment. I’m proud of this little site.

Though all its forms and purposes add to its value, I think that the most important and useful thing about Floxie Hope is it’s core and original purpose–to be a place where people can share stories of healing, resilience, recovery, and, most importantly, HOPE.

Fluoroquinolone toxicity is different for each individual who experiences it. Some people have absolutely devastating reactions, while others get off more lightly. Everyone’s symptoms are different, everyone’s timeline is different, and what helps and hurts each person is different. Also, we all have different backgrounds, personalities, characters, and approaches to life and illness. No matter the severity of an individual’s illness, or personality, or approach to life (both optimists and pessimists, religious people and non-religious people, rich and poor, etc.), we all need, and benefit from, HOPE.

Hope is healing, and it is necessary for healing. It’s not the only factor in healing, and I don’t think that we should try to hope fluoroquinolone toxicity away without doing anything else, but it is a valuable component none the less.

I hope for recovery for all those who suffer from fluoroquinolone toxicity. I hope for change in how fluoroquinolones are prescribed. I hope for acknowledgement of the devastation that fluoroquinolones inflict on the lives of their victims. I hope for less suffering and more healing.

Can we all agree on that? Can we all agree that healing and recovery are valuable, and that they should be hoped for? Can we agree that too many people are getting hurt by fluoroquinolones, and that we should hope for change? I think that we can agree on those things. Hope unites.

There are differences in what changes people think should be made. Some people think that all fluoroquinolones should be taken off the market, others think that they should remain available but that their use should be restricted. Some people think that the pharmaceutical companies can and will discover a cure for fluoroquinolone toxicity (and all the other “rare” diseases and adverse drug reactions out there), while others see the pharmaceutical companies as the problem, not the solution. Some people think that the FDA should be abolished for not adequately protecting people from the harm that prescription drugs do, while others think that working with the FDA is the best way to enact meaningful change. Some people fight, some people forgive, some people do a combination of the two–they’re not mutually exclusive. Some people question all aspects of the pharmaceutical industry (including vaccines), others think that fluoroquinolones are a particular bad apple, but other drugs and vaccines are good and helpful. Some people warn against throwing the baby out with the bath-water, others want to burn the whole system down.

I have been many places on the continuum of opinions above. I can see the perspective of anyone who argues for any of those things. Though I try to err on the side of hope (and continuity–I’m not really a “burn the mother****** down” person, no matter how much I want change), I can even see the perspective of those who are angry, and who want to destroy the entire system that hurt them. Anger can even be seen as hopeful–hoping for change on a visceral, emotional level. The experience of getting floxed, and taking the time to really process my thoughts and emotions about all steps in the journey, has led me to be a more compassionate, open, understanding, and empathetic person. I see perspectives that I didn’t see before, and I understand and value them even when I don’t agree with them.

The floxie community is diverse, and we could focus on our differences. I don’t think we should though. I think we should focus on the things that unite us. Hope unites us. Healing and recovery unite us–no matter what form they take. We’re all trying to do our best to recover, and to make it through this crazy world we live in. We want our health and safety, and the health and safety of our loved ones, first and foremost. Acknowledgement and paradigm shifts are nice too. If we focus on our common goals and strengths, we can get further than we can if we focus on our differences. Hope unites and it heals. We all need hope.

May this site give you hope. May it bring people together. May it be a resource and a community. May you heal. May we all heal.

 

 

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A Full Recovery

Several of the recovery stories on floxiehope.com describe people who are mostly, but not fully, recovered. A lot of the recovery stories are from people who can see the light at the end of the fluoroquinolone toxicity tunnel, but they’re not completely out of the tunnel yet. Even though these recovery stories are not of complete recoveries, I think that they’re still valuable. The show that life can go on through and after fluoroquinolone toxicity, and they describe the physical, emotional, mental, and spiritual journey while it is still vivid and raw. Many of the people with partial recovery stories on floxiehope.com continue to improve. Life goes on–sometimes with bumps in the road/setbacks–but often toward continued recovery.

Some people who have read these partial recovery stories have asked, quite reasonably, if there are any people who FULLY recover, and return to their pre-flox capabilities. To this, I answer, “YES, I have fully recovered.” Me – Lisa – the author of the majority of the posts on this site. I have fully recovered.

When I wrote my recovery story in 2013 I was 90-something-percent recovered. I still had some autonomic nervous system issues and the fear and anger that came with getting poisoned by ciprofloxacin lingered. I wrote an update in 2014 that noted some features of my continued recovery.

Since 2014, I have continued to improve. I was physically completely healed in 2014, but the emotional journey has continued. I have worked through a lot of fear and anger since 2014. Both the fear, and most of the anger, have largely gone away.

I have healed.

I write this not to brag, or to diminish the experiences of those who don’t recover (there are some people who don’t recover, and they deserve our sympathy and support), but, as always, to give others hope. A full recovery is possible. I have fully recovered. I hope for the same for all who read this.

I recently (I got home day before yesterday at the time of writing this) visited Australia on vacation and was able to do all the things that I wanted to with ease. I went on a tour of Tasmania with a bunch of 20-something year olds and was able to keep up with them. We hiked to waterfalls and jumped off sand-dunes. It was fun! My feet didn’t hurt and I had plenty of energy to keep up with them. I was able to eat whatever I wanted. I slept decently–even on couches and in hostels. It was a good vacation. It was exactly what it would have been if I had never gotten floxed. I have recovered.

I hope that my recovery, and these pics of my vacation, give you hope that recovery, and a life that is full of activity and adventure, are possible. I posted these pictures, and others, on my facebook wall as I was touring Sydney, Melbourne and Tasmania. Several people thanked me for sharing the photos because they gave them hope that this type of travel is possible post-flox. It is possible. I had a fantastic time, and I hope that you are each able to take a similar journey, or whatever else you desire that indicates a full recovery.

All aspects of my journey through fluoroquinolone toxicity took time. I encourage you all to be patient with yourselves. I couldn’t have traveled through Australia like I did earlier this month when I was first floxed. I can do it now though, and that feels really, really, really good.

Cradle Mountain Tasmania Harbor Bridge Sydney Melbourne Montezuma Falls Tasmaia Sand Dunes Tasmania

 

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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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Taking Career Opportunities

People who read and follow Floxie Hope are often surprised to hear that I have a day job.  Yes, I spend a lot of time on Fluoroquinolone Toxicity advocacy.  No, it does not pay the bills.  So, I have one of those job things.

Today, May 27, 2015, is my last day at the job I’ve had since March 1, 2011.  I’m moving on to a similar organization (I’m leaving the names of both my current and future employer out of this… just ‘cause) where I’ll be doing the same line of work, but the new job will give me more responsibility, opportunities, and money.  It’s a step up in my career and I’m excited for the future.

All change is bitter-sweet though….. and a little scary.

I got floxed in December, 2011 and there was a time when I thought that I wouldn’t be able to do my current job, much less move on to a job that required more of me – more work, more intellect, more problem-solving, more travel, more energy, etc.  My reading comprehension, concentration, memory and ability to relate to others were horrible after I got floxed.  I didn’t feel capable of doing my job for months after the flox-bomb went off in me.  Things that I did with ease before I got floxed suddenly became difficult.  I had trouble doing the most basic tasks.  I was scared that I no longer had the mental capacity to do the tasks that were required for the job, and that I was going to get fired.

My fears were largely unfounded, because my employer was incredibly patient with me.  My boss and co-workers saw me go from being strong and athletic to barely being able to walk a block, and they were concerned.  They let me take time off of work to go to appointments as necessary.  They saw that my mobility was hindered and did thoughtful things for me – like getting my print-outs from the copier and bringing them to me.  They believed me, and told their loved ones to stay away from the drugs that hurt me.  I am forever grateful to them for their support, sympathy and kindness.  They are wonderful people and it’s a good organization.

Around one year post-flox I had an annual performance review with my boss.  I thanked him profusely for putting up with my loss of mental capacity.  He seemed perplexed by my assertion that my brain had been fried for the last year.  As far as he was concerned, I was doing fine.  I’m glad that my memory loss and other cognitive deficits weren’t as apparent to him as they were to me.  (Floxie friends – know that you may perceive your cognitive issues to be worse than others see them.  I know what it’s like to feel stupid, but you’re not stupid, and other people will be more forgiving of any mental lapses that you have than you will be toward yourself – so try to be kind to yourself.)

I will always feel grateful for my employer for standing by me while I was sick.  They may not see it as a big burden, but I see it as a great blessing that I am thankful for.

It is time for me to move on from a very good organization though.  I have opportunities to pursue, and I’m hopeful that my new employer will be as good to me as my last employer.

There was a long period of time – years – when I truly didn’t think that I would be capable of furthering my career and taking a job that required more of me.  I was grateful for my position, but I was trying my hardest not to lose what I had, and moving onward and upward weren’t possibilities that I could even consider.  Now those possibilities are a reality, and I have the capacity to take new opportunities.  It’s nice, and I’m thankful for the support in my past that has allowed me to get to these opportunities to better my future.

I hope that all my Floxie friends recover.  May you all be blessed with opportunities and improving health.  Both happened for me, and I am hopeful that they will happen for you too!  Hang in there – it gets better.

Hugs,

Lisa

 

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Lisa’s Vacation to Costa Rica

CR Flower

 

Last week, my boyfriend and I went to Costa Rica for a little vacation.  It was a lot of fun!  🙂

I am mentioning my trip for two reasons.  First, if I didn’t respond to an email last week, it’s not because I’ve checked out and given up on the cause, it’s because I was on vacation.  Second, I think that people appreciate posts hearing about people living normally post-flox and post-recovery.

I was able to do all of the things in Costa Rica that I would have done on a similar vacation before getting floxed.  I did a zip-line tour of the jungle canopy.  I rode a horse.  I went on hikes.  I went swimming.  I drove all over creation.  I ate whatever food was in front of me (including Pringles – I was REALLY hungry, they were horrible and I don’t recommend them – but I ate them and was fine).  I drank pina coladas on the beach.  I walked across a hanging bridge that was 100 feet above a raging river and blowing in the wind – it was terrifying but it wasn’t any more terrifying than it would have been had I never gotten floxed.  I did the things that a non-floxed, not sick person would do on a week-long vacation in Costa Rica.  It was a good vacation.  It was a fun vacation.

I have fully returned to the level of health that I was before I got sick.  I hope that this post, and other posts like it, give you hope that you too can get back to a place of health post-flox.  I know that my story is not your story, and that everyone is different, but I hope that you too will someday be able to do adventure sports in the tropics – if that’s what you’re into.

There was a time when I wasn’t able to do the things that I did last week.  There was a time when I didn’t think that I would ever be able to do the things that I did last week.  But the memories of those fears have faded, and my capacity for movement and adventure has returned.

I’m lucky.  I know that I’m lucky and I don’t take it for granted at all.  I also know that some people aren’t as lucky as me and my heart aches for them.

When I was feeling lousy it was really nice to hear about people who were living well after recovering from FQ toxicity.  It felt good to read about people doing extraordinary, yet normal, things – getting married, having kids, getting a new job, going on a vacation, etc.  My ordinary/extraordinary adventure was a trip to Costa Rica.  Here are some pics:

CR Zipline

CR Tree

CR LB Beach

CR Beach

CR Hiking

CR Crocs

 

Random closing thought – my boyfriend and I forgot to change some Costa Rican money to US dollars before we got home.  Now we have about $30 worth of Costa Rican cash that is useless to us.  If anyone who is reading this is going to Costa Rica and can use it, I’ll send it to you – it’s not doing me any good and you’re welcome to it if you make it easy for me to get it to you.  🙂

Best,

Lisa

Photo Credit – Mark Palmer Photography

Happiness Sprinkling

Happiness Sprinkling

I learned about The Happiness Sprinkling Project in church yesterday.  The Happiness Sprinkling Project involves people spreading happiness to others through conveying positive, affirming, beautiful messages to anyone who can see them – often strangers.  The messages are communicated with people holding signs on street corners, saying things like:

You Are Loved

You Are Beautiful

Why Not?

You Are Enough

Live Your Dreams

It’s Going To Be Okay

Trust Yourself

Breathe

Life Is Good

The minister told the congregation about how one woman approached a group of happiness sprinklers and asked them what they were doing.  When they explained that they were spreading happiness she asked if she could join them.  They welcomed her.  She held up a sign that said, “It’s Going To Be Okay.”  As she was holding the sign, tears were running down her face, as if she was telling herself as much as anyone that it was, indeed, going to be okay.

I found it to be really touching.

I think that we all need to hear it sometimes.

IT IS GOING TO BE OKAY

It is.  I don’t know when you’re going to feel better.  I don’t know exactly how you are going to find healing or what your timeline is, but I do know that it helps to believe, deep down in your soul, that you are going to be okay.

Tell yourself, every day if necessary, that you are going to be okay, that you are going to beat this, that you are stronger than these stupid drugs, and that tomorrow will be better.

Words are powerful.  They shape our perceptions.  They may not make your feet feel any better, but they can make you think and feel differently about the pain in your feet.  That shift in perception, from fear and anxiety, to hope and optimism, can help.  The most powerful message for combatting fear and anxiety (IMO) is the sign that read:

YOU ARE LOVED

Believe it, as it is always true.

Fighting the fear and anxiety that FQ toxicity evokes is key.  And the best tool for fighting them is love.  The best tool is always love.

Here’s a little video about The Happiness Sprinkling Project:

IT’S GOING TO BE OKAY

YOU ARE LOVED

Repeat until thoroughly believed.

 

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The Trail

Lisa 2010 CT Finish Molas Pass

Lisa Bloomquist – 2010 – Molas Pass

My boyfriend and I went camping over Labor Day weekend (2014). We went to a pass in southwestern Colorado called Molas Pass. It’s between Silverton and Durango in the beautiful San Juan mountains. Molas Pass holds a special place in my heart, not just because it’s spectacularly beautiful, but also because it’s where I finished hiking the 500 mile Colorado Trail in 2010. (The Colorado Trail goes from Denver to Durango and I had completed the Molas Pass to Durango section before I completed the section that ended at Molas Pass – so my last miles were to the top of Molas Pass, not into Durango.)

I was so strong, and so fit, when I completed The Colorado Trail in 2010. I could hike 15 to 20 miles in a day, with a 45 pound backpack on, without trouble. My legs were like rocks. My arms and core were pretty solid too.

Completing The Colorado Trail was an accomplishment. It was on my bucket list and I did it. I walked every step of the 500 mile trail in one summer. I spent more nights in a tent that summer than I did under a roof. There were times that my body hurt while I was hiking. Of course my back and feet hurt at times – that’s what happens when you carry a backpack up and down mountains for hundreds of miles. But it wasn’t really that hard for me. It took effort – for sure. But I was strong, fit, prepared, lucky and I had the right equipment, so it wasn’t hard necessarily. It was putting one foot in front of the other and I knew that I could do that.

I had taken seven 500 milligram Cipro pills before I hiked the Colorado Trail. I was under my tolerance threshold for fluoroquinolones. I had no idea that a fuse had been lit inside of me and that a bomb would go off a year and a half later. My tendons were fine at that time. So was my cartilage. Neuropathy wasn’t a word that I had heard, much less one that I thought would ever apply to me. I was never so pompous to think that I was indestructible, but I knew that I was strong – very, very strong. I had no idea that I had already been exposed to something that would knock me down and make me feel very, very weak for a while. I had no clue – none.

I spent several days hiking with a guy who had a horrible disease that was causing him to dissolve from the inside out. His bones were disintegrating and so were parts of his brain. Despite the pain that he was in from his disease, he also hiked the entire Colorado Trail in 2010. It must have been hundreds of times more difficult for him than it was for me. The amount of perseverance, strength and tenacity that he had is beyond admirable. I hope that he gained what he wanted from hiking the CT – strength, a sense of accomplishment, the knowledge that he could do it, etc. He certainly gained the admiration and respect of everyone that he encountered. He is a braver person than most – certainly braver than me.

Recently, my uncle suggested that I hike The Colorado Trail again. To prove to myself that I could do it post-flox. To show myself that I had recovered. To demonstrate that I still am strong. I don’t know that I need to prove my strength to anyone else. But maybe I need to prove it to myself.

I know that my tendons, cartilage, muscles and nerves have recovered to the point that I can live normally. For all intents and purposes, I am fine. I am healthy and active. I am not sick.

But I’m not sure that I can hike 500 miles. I’m not sure that my body can hold up to that kind of stress now that the flox-bomb has gone off in me. I’m not sure that my tendons are strong enough, or that my knees can hold up.

My own doubt (and not being sure that I want to do it – to tell you the truth) is probably holding me back more than anything else. Hiking the CT again would also require giving up my job and things like that. Giving up health insurance is something that I don’t take as lightly as I used to. Excuses, excuses.

I should do it. I should put strong back in present tense when describing myself. It would be an accomplishment to hike the trail again. I’m not sure that I can do it post-flox. That doubt makes doing it more meaningful. I would feel as if I had not only done something difficult, but overcome something even more difficult in order to do it.

If a guy whose bones are dissolving could do it, a recovered floxie can too.

It’s on the bucket list. Again.

DSCN2870

2010

Thank you for reading Floxie Hope!  I hope that all who read Floxie Hope gain insight, support, understanding and, most of all, HOPE.  If you would like to support Floxie Hope, all contributions will be greatly appreciated!  Click HERE to contribute to Floxie Hope.  Thank you!

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