Tag Archives: Recovery

Why All Recovered Floxies Are Only 99% Better

Every Friday Michelle Polacinski, a Floxie as well as the Director and Producer of ‘Floxed,’ sends out a newsletter to those who have subscribed to the ‘Floxed’ newsletter. The Floxed Friday updates are always interesting and thoughtful, and Michelle has given me permission to share them here. 
 
If you would like to receive the Floxed Friday updates directly from Michelle, please subscribe to the Floxed Documentary email list. You can subscribe through THIS LINK. Subscribing also helps Michelle to gain funding for the Floxed Documentary, and she doesn’t send out spam. 
 
The following was written by Michelle: 

It’s hard to bounce back from Fluoroquinolone Toxicity Syndrome. In fact, many people never do. For those who do, you may ask, How do you feel? Are you back to normal? Are you at 100%?

I don’t know a single floxie comfortable with saying they are 100% better. I never have. I also don’t think it’s possible to be “back to normal” or to who you were previously when something like this happens to you.

It’s traumatic. It changes your perspectives on life, on the medical system, on what the heck an antibiotic is, on what you put in your body, and the significance of everyday things. How can you ever be back to who you were, especially when you come back from a horrifying disability?

And no, rarely anyone can say they are 100% better because flare ups happen. Some symptoms never go away. Even if you feel good for years, one day you wake up with the worst chest pain in your life and you wonder, “Is this an aortic aneurysm?”

EBV and Nerve Damage:

I felt this way more recently with the onset of Epstein-Barr virus, which affects approximately 90% of the population, commonly known as mononucleosis or “mono,” and going back to a lot of the same supplements I took every day for years when I was at my worst.

I’ve been dealing with numbness in my hands again and it’s horribly frustrating. This came up after taking cacao, a neurostimulant, and it made me wonder, Are my hands getting better or worse?

A thing we floxies say is that “healing comes in waves.” Really. You’ll feel a symptom and it may come and go over the matter of a few days or weeks or months before you start to feel it get better. Maybe my long-time nerve damage in my hands is going through a healing process again thanks to the cacao or maybe it’s getting worse. I’ll never know and there is probably no PhD, no expert on Planet Earth, who has the answer to that question, so I just have to wait it out like everything else.

So for now, my pee is bright yellow all thanks to high levels of b-vitamins in my system, you know, to stimulate nerve healing, mitochondria healing, and all that stuff. Amy Moser mentioned in our interview that it takes about a month for one inch of nerve to heal and that her nerves are forever damaged after 8 years, so she believes.

Who knows?

What’s next for the Floxed Team:

We have awesome news to share.
We’re finally all meeting in Los Angeles to shoot some of our bigger interviews (shh) with some big researchers and medical professionals in the field next month.

I’m very excited since LA was my home when I was floxed and I can’t wait to meet some of these people I’ve only spoken to online or over the phone. I’ll be meeting even more friends/floxie family while we’re out there and this is my first time back home since getting floxed.

We’re also applying to more grants and we feel very positive about them, especially one that particularly focuses on female filmmakers making films about disability awareness (heck yeah we are).

***Wish us luck and please cross all your fingers and toes that we can get some of these grants. It would push the process along much faster***

Have a great weekend!

Best,

Michelle Polacinski
Floxie, Director, and Producer of ‘Floxed’

 

Floxie Hope Podcast Episode 24 – PJ

PJ shared his journey through fluoroquinolone toxicity on Episode 24 of The Floxie Hope Podcast. Check it out!

http://www.floxiehopepodcast.com/episode-024-pj/

or

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

PJ was given IV levofloxacin/levaquin and flagyl in the hospital, and afterward he suffered from multiple severe side-effects including debilitating fatigue, peripheral neuropathy, body-wide numbness, pain, inflammation in all his joints, and more.

He has come a long way, and he is 80% recovered.

PJ is wonderfully insightful and inspirational. Please listen to, review, and share, this episode of The Floxie Hope Podcast. Thanks!!

 

 

 

 

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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August catch-up

I haven’t written a post for Floxie Hope in a while, and I apologize for that!

A lot has taken place in both my personal life and in “floxie” news since I last posted on this site. My thoughts on all matters personal and professional are a bit jumbled at the moment, so this post is just going to be a bit of a hodgepodge.

First and foremost, the FDA announced the warning label changes for fluoroquinolones. Please see “FDA Drug Safety Communication: FDA updates warnings for oral and injectable fluoroquinolone antibiotics due to disabling side effects” for more information about this. The CBS News article, “Class of antibiotics gets stronger warning due to dangerous side effects” is a succinct article to show your loved ones too. I will write more about this important update shortly–just as soon as my life calms down. If you want my quick opinion–I think it’s a huge step in the right direction and I hope that it will keep many others from getting hurt by fluoroquinolones.

I haven’t written more extensively about the warning label changes because I’ve been busy in my personal life. The main thing I’ve been busy with is…

I got married!

Wedding Lisa Mark

The wedding was beautiful and perfect and I couldn’t be happier! 🙂

When I first got floxed I was scared that I wouldn’t ever be able to find love and acceptance. Those fears faded with time and healing, and this past weekend I was able to marry the love of my life, Mark. It was an incredible day and I look forward to years of happiness with my amazing husband!

In marrying Mark, I not only gained a wonderful husband, I also gained many new family members, including three amazing step-kids. Mark’s kids live in Michigan with their mom most of the time, but they have been staying with us in Colorado for the last several weeks. They’re wonderful kids, and I enjoy them immensely! I’m not sure if it makes me a good or bad step-mom to note this next thing, but, man, keeping up with kids is difficult! I’m semi-exhausted most of the time – and that’s with healthy, happy, good kids, and a fully recovered (from FQ toxicity) body and mind. People who parent while sick (with FQ toxicity or any other illness), or who parent sick kiddos, have my undying admiration and respect. I don’t know how you do it, but you do, and you deserve props and recognition for the effort involved.

Even though I’m semi-exhausted from wedding planning and execution, as well as from keeping up with the kids, I think that it’s a normal level of exhaustion for a 36-year-old doing what I’m doing. I have all the “spoons” I think I would have if I had never taken ciprofloxacin. I was more exhausted more frequently when I was going through the depths of fluoroquinolone toxicity. Over time (and I think that supplementing iron helped me immensely – though I don’t supplement it regularly any longer), my energy levels have returned to normal. I hope that my noting of getting my energy back helps others to have hope that their energy can return too.

Thank you to all in the floxie community who wished me well on my nuptials on facebook! It is great to have your support and well-wishes! I consider many in the floxie community to be friends, and each of you are appreciated!

If anyone reading this feels inclined, it would be wonderful to read a post about how fluoroquinolone toxicity has stolen your energy and/or ability to parent. If you want to write about that, Hormones Matter is always looking for new writers, and it’s a good site to tell personal health stories/journeys. Here’s info on how to write for Hormones Matter –  https://www.hormonesmatter.com/write-for-hormones-matter/. If you have another topic that you’d like to write about for Hormones Matter, feel free to reach out about anything health-related that is on your mind.

I have been referring people to this post – https://floxiehope.com/2015/10/12/im-floxed-now-what/ and this site – http://fluoroquinolonethyroid.com/ – often lately. Please check both out!

Those are my updates for the moment. Sorry for this being such a random and disjointed post! I hope that you all are finding help, hope, information, and recovery!

Hugs,

Lisa

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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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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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Fluoroquinolones and Autoimmune Diseases – Unwanted Connections

I’m struggling to get through The Wahls Protocol: A Radical New Way to Treat all Chronic Autoimmune Conditions Using Paleo Principles (if you purchase the book through the Amazon links in this post, a portion of the proceeds will go to the QVF). It’s an excellent book that I highly recommend, and I will undoubtedly be writing posts about it in the near future with multiple reasons why you should purchase and read it yourself.

But I’m struggling to read it because it scares me.

The Wahls Protocol frightens me because of how similar multiple sclerosis (MS) is to fluoroquinolone toxicity.  Dr. Wahls goes over how mitochondrial damage is linked to autoimmune diseases, especially MS.  Fluoroquinolones profoundly damage mitochondria.  Fluoroquinolone toxicity looks and feels a whole lot like multiple autoimmune diseases including rheumatoid arthritis, lupus and MS.  Some people have proposed that fluoroquinolone toxicity is its own autoimmune disease, just the auto-antibodies have not yet been identified and thus it is not treated as an independent autoimmune disease.  In some people, fluoroquinolones have triggered a recognized autoimmune disease, as you can read about in Michelle’s Story of fluoroquinolone induced lupus, and I have another friend with fluoroquinolone induced MS.

There is nothing more frightening to me than an autoimmune disease.  Having my body attack itself sounds absolutely horrible.  I hate the thought.  I turn off, get nauseous, and resist every time I hear the suggestion that fluoroquinolone toxicity is an autoimmune disease.

MS causes brain lesions, weakness and paralysis, and typically requires drug treatments that are almost as horrible as the disease itself.  MS is terrifying.  I HATE the thought that fluoroquinolone toxicity might be unrecognized MS with different antibodies.

I tell myself, “I don’t have MS, I got poisoned.  I know my poison – Cipro.  It kicked me but I got back up.  My body isn’t attacking itself for no reason.  I got poisoned.”  It makes me feel a little bit better.

But there’s a big part of me that believes that the root of all autoimmune diseases is cellular (especially mitochondrial) poisoning.  I suspect that everyone with MS got poisoned by mitochondria damaging chemicals, their poisoning was just less sudden and obvious than mine was.  (Read “Digging Deeper Into Mitochondrial Dysfunction” for more information on this line of thinking.  Also note that mitochondria are damaged by multiple pharmaceutical and environmental toxins, that damage to mitochondria is cumulative, and that a tolerance threshold for mitochondrial damage must be crossed before a disease state sets in.)

Even though The Wahls Protocol is a hopeful book, with lots of lifestyle change suggestions that have reversed the course of autoimmune diseases in many people, and the diet and suggestions that Dr. Wahls makes will almost certainly help floxies (including me), I’m still struggling with it.  It’s really difficult for me to face the notion that my reaction to Cipro may have been an autoimmune reaction.  I don’t like that thought at all.

I realize that it may seem otherwise, but I really don’t like being able to connect fluoroquinolone toxicity to autoimmune or neurodegenerative diseases.  Unfortunately, mitochondrial damage and oxidative stress are hallmarks of both.

fluoroquinolone-lawsuit-banner-trulaw

As I read The Wahls Protocol, I wonder if I got hit with fluoroquinolone toxicity because I have a genetic predisposition toward malfunctioning cells.  Maybe my cells don’t detoxify xenobiotics as well as the cells of other people.  Perhaps the mechanisms that protect my mitochondria aren’t as robust as they need to be to survive in this environment, and my cells are likely to react in a way that involves making me sick when I am exposed to pharmaceutical and environmental poisons in the future.

I hate that thought.  It makes me feel weak and as if there is something wrong with me.

I tell people all the time, “You’re sick, you’re not broken, and you’ll get better.”  I mean it.  I believe it’s true.

I got better.  I recovered from fluoroquinolone toxicity.  But I wonder if my cells are a bit broken, or at least breakable.

I don’t like acknowledging my weaknesses any more than anyone else.  I hate it.

But in acknowledging that I am susceptible to getting poisoned, maybe I can gain power.  Maybe that knowledge can save me hardship and suffering down the road.  Maybe that knowledge can help me to avoid mitochondrial poisons in the future.

Guidelines and methods for how to both avoid future damage and how to put my cells back together are available in The Wahls Protocol. If I can calm my nerves enough to get through it, I’m sure I’ll gain a lot from the book.

Renee recovered from fluoroquinolone toxicity through using the methods described in The Wahls Protocol.  Dr. Wahls’ TED talk (below) about her journey through MS and recovery is both beautiful and inspirational.  There is a road to recovery from autoimmune diseases.  Maybe I shouldn’t feel so scared of them.

 

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