*The following is an individual’s story of surviving fluoroquinolone toxicity. It is not medical advice. Please see the disclaimer at the bottom of the story. Thank you, and please be cautious with all treatments.
It started with a simple sinus infection in 2006. A doctor prescribed Levaquin. Six days into a ten day prescription, I knew something was very wrong.
I was sitting in an after-school meeting. As the literacy coach in an elementary school, I was reviewing writing samples with the 4th grade teachers. One of the teachers said, “Tammy, why are you crying?” I didn’t even realize it, but tears were pouring down my face. After going through several days with a hyped-up feeling, like one might get after taking a cold medicine, I was suddenly crying. This was only the beginning.
After a scary drive home, I called the on-call doctor who told me to take Benadryl. Back in my physician’s office the next day, she told me to “drink plenty of water.” After a few days, I had improved somewhat but still kept my appointment with a neurologist.
My initial symptoms faded but, within the next few weeks, were replaced with much more painful symptoms including snapping vertebrae, numbness and tingling in my hands, legs, and feet, weakness, fatigue, brain fog, cognitive difficulties, insomnia, anxiety, and a few other symptoms I must be forgetting. Oh, and did I mention my memory wasn’t what one would exactly call sharp?
How I wish I could tell you I found “the” answer to end all my suffering, but anyone reading this probably knows that there is no “magic bullet.” There is some very good news though. There is hope. There is healing.
Over the next two years, I struggled to find relief. Back in 2006, there was no Floxie Hope nor were there any blogs or online resources except a few anecdotal notes about people who had taken fluoroquinolones.
I visited two different neurologists. The first one told me I had a toxic reaction to Levaquin. Ah, someone who will help me! At the very next appointment, he offered me Xanax. Perhaps you now think it’s in my head, Doc?
Onward to Neurologist #2 who ordered MRIs of my brain and spinal cord and also a spinal tap. They all came back normal. Since I had to work, I needed relief. When he offered to prescribe Klonopin and Neurontin, I took them. They did provide relief, but I wasn’t keen on being on medications. First, I weaned myself off Neurontin. Knowing what I know now about benzodiazepines, I wish I’d chosen Klonopin first. Even so, I did eventually taper my Klonopin very slowly and was med-free once again.
Now for the good news.
My life is much, much better after taking Levaquin. That is not a typo. This does not mean that I did not suffer horribly and had many days when I wondered if I would be able to take life in that much pain. The first two years had few ups and many downs.
Many days I had to leave work at half day because my legs were so heavy I could barely walk. I shuffled from classroom to classroom, meeting to meeting, until I wasn’t sure if I would be able to drive home. My husband, the best person I know, had to help me out of bed many mornings. He also rubbed my back and let me cry.
So how could this be better? Being in such pain caused me to have to stop and think. What had my life been like up to this point? Was I living the life I imagined for myself? I had never thought of that before because I was too busy people-pleasing and working my life away. I was somewhat overweight. My diet was crappy, and I was not exercising. In fact, I probably could have taken a few days off and rid myself of the sinus infection, but no. I had to get back to work.
After continuing to work full-time for the next year and a half, I decided to resign my position and open my own tutoring business. I now had time to take walks with my husband. These daily walks, which I continue to this day, led me to discover new things about myself and my marriage. We talked and talked, decided to simplify our lives, and I continued to heal. I grew stronger.
For several years, I remained significantly symptom and pain free.
Between 2007 and 2014, I was able to:
- Obtain my master’s degree
- Build a tutoring business
- Take daily four and five mile walks with my husband
- Improve my diet and lose over 30 pounds
- Enjoy a few drinks now and then
- Hike in Big Bend, Rocky Mountain, Arches, and Canyonlands National Parks
- Co-author a book with my husband
What did not help my healing?
- Drinking too much caffeine or alcohol
What did help my healing?
- Reading self-help books, science books, nonfiction, and novels
- Remaining positive and staying away from negative people
- Taking daily walks and adding in some arm weights as I could tolerate them
- Having a few friends and family members I could talk to (or type 3am emails to), and they wouldn’t think I was crazy
- Always believing I would heal, even when I was scared out of my wits
- My husband, who should be cloned
With my new lease on life, I decided to kick it up a notch in 2014. I was going to be a runner! I started out going a mile, then two. It was a bit difficult, but it was June in Houston and I hadn’t run since playing field hockey in 1988.
I ignored the numb legs I felt nearly every time I ended a run. I didn’t think a thing about the insomnia that started keeping me awake.
I truly thought I was healed from my Levaquin nightmare, so it didn’t hit me that these symptoms could be anything other than a 42 year old woman giving running her best shot. And then one day I couldn’t run at all. My legs felt too heavy to even walk much. I started to have those shooting nerve pains in my arms, and my lower spine started vibrating.
When it hit me that I could be having a relapse, I did what everyone else now does the minute they need to find something. I googled Levaquin symptoms. My searches returned websites and stories and an overwhelming amount of information. But I found something that was better than everything else.
I found Floxie Hope.
I found someone who was going through a relapse just like me. I found others who were suffering and wanted hope.
My relapse lasted nearly four months, but it was nothing like my initial floxing. I was able to continue working without anyone suspecting I was struggling. I stopped running and told myself that I would heal again.
It took three to four months, but I had a husband who understood. My family, who lives far away, was supportive. A few of my very close friends, once again, supported me. And I had new friends here on Floxie Hope who cheered me on. I cheered them on. We swapped “what works” and “what doesn’t work.” I completely cleaned up my diet. The pain went away for eight months.
During that time, I took an 8 week Mindfulness-Based Stress Reduction class. I had experimented with meditation and gentle yoga, and this deepened my practice. It gave me techniques and an approach to use in my daily life, with or without pain.
When my spine started vibrating again and my legs felt weak in October 2015, I thought that perhaps it was time to seek some help. A new neurologist sent me for a brain scan which, once again, came back normal. She tested all my vitamin levels and several had deficiencies. Perhaps supplements would help. She told me it would take time. It did. Four months later, my symptoms had disappeared and my levels were within normal limits. I was on the mend once again.
Now my husband and I are starting another business. I plan on living to 100 and, whatever happens along the way, I will face it head on because life is for living.
You too can heal. Instead of hoping for your “before fluoroquinolone” days, try to stay focused on the present. What can you do today? What can you do this minute? Is it just enough to fix yourself some breakfast and get a load of laundry done? That’s ok, and please don’t beat yourself up for wanting it to be different. We all do that.
But don’t give up.
Find something that you enjoy doing. Do it. Find ways to heal yourself. It’s possible. Don’t live in the past. The present is too beautiful, and the future will be there when you get there.
Much love and healing to you all.
** The story above is truthful, accurate and told to the best of the ability of the writer. It is not intended as medical advice. No person who submits his or her story, nor the people associated with Floxie Hope, diagnoses or treats any illness. The story above should not be substituted for professionally provided medical advice. Please consult your doctor before trying anything that has been mentioned in this story, or in any other story on this site. Please also note that people have varying responses to the treatments mentioned in each story. What helps one person may not help, and may even hurt, another person. It is important that you understand that supplements, IVs, essential oils, and all other treatments, affect people differently depending on the millions of variables that make each of us unique. Please use appropriate caution and prudence, and get professional medical advice.