What’s On My Mind
I have a very serious story to share. I’ve put off writing it for a number of reasons: fear that writing it down gives it more power or permanence in my life, fear that the story isn’t actually over, shame that I allowed this to happen at all, especially given what happened to my dog Holly. That’s probably the biggest reason I’ve put off sharing this on the blog and on social media: I should know better than to just blindly trust a doctor prescribing medication. That killed my dog. And it could’ve killed me.
On April 20, 2016, my doctor (now former) prescribed a fluoroquinolone antibiotic called Levaquin (actually I took the generic, levafloxacin — more on that later) to treat a sinus infection. The only warning he gave me was to take a probiotic along with it, as it might upset my stomach. I’d been a patient of his for years and had no reason to question his medical advice. While I’d never taken a fluoroquinolone class antibiotic before, I trusted he knew best.
Ah, trust. There’s that word. I guarantee you there are some who will read this post and scorn me for just trusting my doctor and not doing research. I know this will happen because it happened after Holly died and it happened to my face when I told people about what Levaquin did to me. Because it’s easy to put on moral superiority when it’s someone else’s pain. If you’re gearing up to comment about how stupid I was to blindly trust my doctor, do everyone a favor and just don’t. I won’t approve your comment anyway.
The morning of April 23, after taking my fourth dose (of a 14-day course), I ended up in the ER with breathing difficulties, racing heart, vertigo to the point of being unable to stand, and extreme anxiety. Let that sink in for a moment: my first symptoms of an adverse reaction were serious enough to justify a trip to the emergency room.
It took the ER techs four tries to get an IV started. While laying there I developed internal tremors–I don’t know how else to describe them other than to say there were earthquakes going on inside my body. I asked the doctor if this was a reaction to Levaquin. He said no, if it was a reaction, my lips would be swollen or my throat would be closing. He said these symptoms were simply me being dehydrated.
He was grossly misinformed. What I actually was experiencing in that moment was an attack on my central nervous system.
Over the next couple of days my symptoms escalated to include: pain in my hamstrings and hips, roaming anxiety, mental fog and confusion, uncontrollable muscle twitching, dizziness, internal trembling, inability to regulate body temperature, difficulty breathing, middle ear pressure and tinnitus, racing heart, insomnia, myoclonus, peripheral neuropathy.
Any one of those symptoms alone is troubling. Combined, they were terrifying.
Then came the word loss and cognitive dysfunction.
Word loss: I would look at an object, know what the object was and be unable to get the name of the object out of my mouth. Remember, I’m an author. I make a living using words. At this point I figured my writing career was over.
Cognitive dysfunction: I couldn’t process information, especially if I had to process more than one information input at a time. For example, if I was driving (one input) and someone said something to me (second input), I would lose the ability to focus on either.
Some of the most crushing moments in this journey came when my friends laughed at me when they witnessed my cognitive impairment first hand, even though I’d told them I’d been poisoned by Levaquin and was going through severe trauma. They actually laughed at me. In fact, what I found is that for the most part, people don’t want to hear that you’re struggling. It makes them uncomfortable. What they want to hear is that you’re fine, because that way there’s no responsibility on their part. I quickly discerned who truly wanted to hear how I was doing and who just wanted me to tell them I was “fine”. I’m so grateful to those friends who actually listened and cared. (Thank you.)
Overwhelmed with this onslaught of symptoms, I of course made an appointment to go back to my doctor, but wasn’t able to get in to see him until the following week. So I opted to see his assistant at the end of the week, still 3 days away. In the meantime, I took to the internet to research what the hell was happening to me.
What I found scared me to death. Story after story of people crippled by this medication. Some cases were so severe, people took one pill and never walked again. If you think I’m kidding, go look for yourself.
During that search I came across a site called FloxieHope. There I found stories not only of people who’d been adversely affected by Levaquin (as well as Cipro, Avelox and other fluoroquinolone antibiotics), but people who had recovered. I scoured the recovery stories, making a list of the things they’d done to get better. From that list I made a plan of action and got to work.
Later that week, I did see my doctor’s assistant. She ran standard tests to check system function, but (as is the case with most people poisoned by FQs) all my numbers came back normal. In today’s medical world, normal numbers means no problem. While the assistant agreed something was happening to me, because my numbers were normal, she had no way of treating me. When I explained to her and even showed her the research I’d done online for how others have recovered, she literally told me to stop reading the internet.
Let me say this as clearly as I can: researching on the internet saved my life.
At this point my doctor, clueless on how to help me and probably afraid I was going to sue him, started passing me off to different specialists. The only one who was of any help at all was my neurologist. He is the only doctor in this process who knew that fluoroquinolone antibiotics cause memory loss and neuropathy (both which he diagnosed me with).
Based on what I’d read from recovery stories, I sought the advice of a naturopath. I also began acupuncture and therapeutic massage. And I prayed. A LOT.
I cannot begin to describe the anguish I was in at this point. I don’t use that word lightly. My body hurt. Every time I tried to fall asleep, myoclonus would startle me awake. Anxiety attacks hit me out of nowhere. I couldn’t think. I couldn’t eat, either. Not only had the antibiotic wrecked my intestines, it had also caused strange issues with my ability to swallow. I also experienced heartburn, which I never have. My guess is this had something to do with the central nervous system damage and smooth muscle function.
I want to stop here and note a couple of things. First of all, two weeks after I took Levaquin, the FDA updated the safety guidelines to state that doctors should not prescribe fluoroquinolone antibiotics for routine infections. This is something I’d literally argued with my doctor about. I told him this medication was like a nuclear bomb going off in my body. He maintained he’d followed standard protocol according to (flawed) FDA guidelines regarding these drugs. (You can read more about the history of those guidelines here.) I have to say, I can’t help but wonder what my life would be like today had the FDA not dragged their feet and instead updated those guidelines even a couple of months earlier.
I contacted a lawyer a month after the initial reaction. He said if I’d taken the name brand medication, Levaquin, I would have a slam dunk case. But because I took levafloxacin, the generic form, I couldn’t sue the manufacturers, because there is a law in America that consumers cannot sue the manufacturers of generic medication. That’s right: no recourse and no justice for people damaged by generic forms of medication. Keep in mind that many insurance companies require patients take generic forms if they exist. The only action I could take, the lawyer told me, was to contact my representatives and ask them to change the law. Isn’t that great? God bless America. (Needless to say, I’m not a huge fan of Big Pharma or Big Gov.)
Armed with the recovery stories from FloxieHope, my naturopath and I came up with a regimen of supplements to counteract and heal the damage done to my body. It was a bit like throwing spaghetti at the wall and seeing what stuck, but I was desperate to try anything if it would get me my life back.
Here are the things that helped me recover from Levaquin toxicity, as well as additional information for those seeking help. Please note that not everything works for everyone. What helped me might not help you. Because there is no set treatment or protocol for FQ toxicity, you have to try things and see if they help. If they don’t, then don’t use them. That being said, here’s what helped me:
- MagnesiumLevaquin robs your body of magnesium, but having an abundance of magnesium available in your body can help prevent and repair damage
- Magnesium chloride and magnesium threonate are good forms to take
- Add magnesium in liquid form to your drinking water and drink it throughout the day. I used brand called ReMag.
- Natural Calm is a magnesium citrate drink that can help calm anxiety, which is helpful before sleeping, but it can irritate your stomach
- Magnesium threonate crosses the blood-brain barrier and specifically targets brain function, which can help with brain fog
- Epsom salt baths help relax your muscles and rid your joints of pain, but also get magnesium into our system. Very helpful before trying to sleep.
- Magnesium lotion is like a miracle for aching joints. You can find it at health food stores such as Sprouts.
- TurmericTaking turmeric supplements or eating foods rich in turmeric can help fight inflammation
- Bone broth and anti-inflammation diet
- Eating a clean diet that is high in anti-inflammatory foods will help you recover faster
- Avoid sugar and gluten as much as possible, as both impede brain function
- Bone broth can help with immune function, gut health and supply collagen
- ProbioticsTake a good probiotic to help get your gut flora in balance. Studies show your gut health directly affects your brain health and function.
- Fermented foods (sauerkraut, kefir) are also hugely beneficial to gut health
- Active B VitaminsB vitamins are essential for nerve function as well as memory. Taking the active form (often has “methyl” in the name or an L in front of it) makes them more bioavailable to your body
- I like the Jarrow’s B-Right. I could tell a different in energy levels and mental clarity after I started them.
- ALA, NAC, TaurineThese supplements support detoxification and help restore nerve function
- CoQ10, MitoQFluoroquinolones break down cell walls and kill mitochondria. That’s how they work. So even after the drug is out of your system, it leaves a trail of mitochondria damage, which some think is permanent. (That hasn’t been the case for me.) Because mitochondria are your energy centers for your cells, this leads to mental and muscle fatigue, as well as other problems due to poor cellular function.
- Healthy fatsAdding lots of healthy fats to your diet will help boost your brain health and help get neurogenesis (birthing new neurons) get started again.
- Coconut oil, MCT oil, avocados and avocado oil, and grass-fed butter are excellent sources of Omega-3 acids which maintain brain health and even reverse neurological decline (such as Alzheimer’s)
- Tart Cherry JuiceFull of natural melatonin, so very useful before sleeping. I used the concentrate so I could mix my own ratio depending on how much help I needed getting to sleep.
- If insomnia was really bad, or I woke up in the night, I’d take liquid melatonin as well.
- My doc prescribed Xanax to help me sleep, but it gave me extreme paranoia, waking nightmares and hallucinations.
- Thorne Basic Detox NutrientsThis is a multivitamin that has the active B vitamins, but also has phosphatidylcholine, which helps rebuild cell walls and detox the liver.
- I would take this OR active B vitamins, not both at the same time.
- L-theanineI’ve added this recently and find it helps with focus and lifting brain fog
- CollagenLevaquin damages connective tissue, not only in your joints but also in your skin, your teeth, everywhere
- I think collagen quickened my recovery, by helping replace what was being broken down by the drug
- Most powdered forms taste like cow (ugh). The brand I prefer is Bulletproof Collagen Protein. It has hardly any taste. I blend it into my coffee, along with grass-fed butter.
- Eat foods that boost glutathione
- Glutathione is a product made by your liver that helps detox bad stuff. Certain foods boost glutathione production: brussel sprouts, broccoli, parsley, cabbage, cauliflower.
- Keep moving
- Continue to move, even if your joints hurt, but take care to do so carefully so you don’t tax your tendons or risk falling
- Using your muscles will help heal mitochondria, but don’t overdo it. Go slow and work your way up after you start regaining your energy.
- I did qigong in the beginning, going very slow
- Meditate and pray
- Levaquin fries your central nervous system, skewing your autonomic system so that your sympathetic (fight or flight) gets amped up, and your parasympathetic (relaxation) gets suppressed. This is one of the reasons people experience extreme anxiety when on levaquin.
- Cyclical breathing (inhale for a count of 5, exhale for a count of 5) can help realign your autonomic system. The Heart Math Quick Coherence technique is really good for this.
- Listening to healing meditations can also help alleviate anxiety. Personally, I liked listening to The Honest Guys healing meditations on YouTube.
- Every night when I soaked in the epsom salt bath, I’d have a chat with God about how we were going to get through this and this wasn’t how I was going to end. Your mileage may vary as far as your spiritual life goes, but I found this to be immensely helpful, especially in helping calm down the anxiety and fear. I had faith that I’d get better. That’s what our bodies do. They heal. I knew my job was to support my body in doing its job.
- I did a series of whole-body acupuncture sessions, mostly to target neuropathy in my hands and feet. It helped the neuropathy, but also helped calm down my whole body. I don’t know how, but it worked. The first couple of sessions were odd, but after that I actually liked it.
- Drink water
- I drank a gallon a day to help move the drug out of my system
- Therapeutic Massage
- I experienced a lot of tendon and joint pain, and found therapeutic massage helped. I think it also helped move the levaquin out of my tissues and lymphatic system.
Some advice for anyone going through this:
If your doctor won’t listen to you or believe you (and odds are they won’t), trust your gut and find another doctor if possible. It took me three months to get an appointment with a new doctor, but it was worth the wait. I found a new doctor who is willing to work with my naturopath and doesn’t mind that I do alternative treatments such as acupuncture. She also didn’t question if this had really happened to me, but rather ordered additional tests that my original doctor didn’t order, to rule out other kinds of damage and risks.
I’ve found that my mindset made a huge difference in this journey. A week after that initial ER visit, I had this overwhelming compulsion to get a massage, despite being in terrible pain. I called some places near my home, but they were booked all weekend. This was at noon on a Saturday. I called another place a little farther away, and they had an opening at 1pm. I raced over there. Chatting with the therapist a bit beforehand to explain what was happening, we came to realize we both were believers. During the massage, the therapist prayed over me. Now, your mileage may vary, but for me, that was pretty amazing. At the end of the session, he said he’d wondered what was up with that opening in his schedule on a Saturday, since he’s usually booked solid. He said clearly God knew I needed that slot. To me, that was a sign that I wasn’t in this alone, and that I was going to get better. I told myself Levaquin poisoning was part of my story, but it wasn’t the end of my story. This wasn’t the end of me. Reminding me of this every day kept me going. I rejected letting this poisoning settle and become who I am. I didn’t and won’t let this define me.
One of the parting shots of Levaquin toxicity is hair loss. Mine started shedding two months after I took the medication. It came out in handfuls. It’s like Levaquin’s one last way of giving you the finger. It’s bad enough that you hurt and you can’t think. Then your hair thins out. Mine got to the point where I didn’t want to leave the house. It was really awful. Again, with the help of internet resources and my naturopath, I did some things to kick-start the regrowth process: Wellness Mama’s Hair Growth Serum, castor oil, essential oils, liquid biotin drops, collagen, and zinc supplements. It’s now five months after the shedding began and a lot of it has regrown. I cut it back to a pixie cut so the difference in lengths isn’t as obvious. It’s definitely growing in.
I’m now almost seven months out from taking that first dose of Levaquin. I’d say I’m about 98% better. I’m writing again, thank God. When people ask when my next book is coming out, I feel a sense of shame. This medication robbed me of most of this year, and that is time I’ll never get back. Still, I have so much to be grateful for. Everyday I’m grateful I haven’t suffered an aortic aneurysm or snapped an Achilles tendon. I still experience some joint and ligament pain depending on what I eat and how I exercise. And while I can tell my cognitive function isn’t 100% yet, I’m going to get there. I’m going to come back from this better than I was before.
This is not the end of me. This has only shown me how strong I am.
If you’ve taken Levaquin, Cipro, Avelox or any other form of fluoroquinolone antibiotic and think you’ve suffered adverse affects, please visit FloxieHope. The stories and information on that site saved my life. Please also feel free to leave a comment or share your story below. My post about Holly and Deramaxx has proven informative and useful to others. My hope is this post will be helpful as well. That being said, I reserve the right to delete any disparaging remarks. If you have nothing beneficial to add to the conversation, go elsewhere. And if you know someone going through chronic illness or health crisis, please show them compassion, patience and understanding. For the love of God, don’t laugh at them.
TL:DR – Taking Levaquin can seriously damage your health. Proceed with caution.
UPDATE December 2018: Thank you to everyone who has read and shared this post. Thank you to everyone who has reached out to me with encouragement and with their own stories about fluoroquinolone antibiotics. My hope has always been that by sharing my story I might help others either in their own recovery journey or in warning them of the dangers of these medications. Knowing that my story is helping others makes my having gone through it somehow meaningful. It wasn’t in vain. So thank you for reaching out to me and letting me know my story has helped you. I’ve put everything in here, all the information I have to share. I receive a lot of requests from people asking for help, and while I understand what you’re going through, I cannot offer more than what I’ve written here. My tendency is to wrap my arms around the entire world, to help the whole world. I am one person, though, and I can’t carry the world. Please understand if I am unable to respond personally to your messages. Please know that my heart goes out to you, and I freely offer my story here to you in hopes it may help you as you find healing. Above all I wish you wholeness and joy. Thank you. -Amy
I’m in the kitchen icing a cake.
This happens, like, never. I’m a notoriously bad cook. When my kids see me making dinner they cry and run away. Baking is better, but I do it so infrequently no one ever really remembers I can, including myself.
So I’m icing this cake. It’s a zucchini blueberry cake with lemon buttercream frosting. (Kinda weird, right? But also maybe yum.) My hair is a mess. So is my face. Not to mention the kitchen. In fifteen minutes a group of friends will show up at my door for book club (aka, wine club). The knife slides along the surface of the cake, forming tiny wakes of buttercream, when suddenly a voice says, “Most of the time I feel miserable and alone.”
The knife stops mid-swipe and I listen. Not with my ears, though, because the voice is in my head.
The call is coming from inside the house.
I don’t know who this character is talking to me (yet), but in my mind I can see her walking through a crowded high school hallway and in my chest I can feel what she’s feeling. It’s like I’m some kind of medium for fictional people.
I put down the knife, pick up a pen and start writing her down. The cake can wait. So can my hair and my face and the clock and my friends showing up at my door with wine. There’s a voice in my head with a story to tell.
And that’s how this writing thing works.
For me, at least.
We recently took a trip into the mountains in Colorado to see the fall colors. Here are some photos I took along the way. Enjoy!
This post is dedicated to a couple of young people I know who struggle with the idea of having to get things right the first time.
I’ve been taking a ceramics class for fun and to explore another creative outlet. For the last few weeks, we’ve been hand building different kinds of vessels and forms. But on Monday, we switched to throwing on a pottery wheel. My instructor made it look so easy, demonstrating how to center the clay and pull the sides up into a cylinder.
Then it was our turn.
We sat at our wheels and tried to coax cylinders out of our own lumps of clay.
And we tried.
To be fair, a couple of people did quite well. But most of us…well, it took several attempts before we got anything not wobbly, let alone cylindrical.
It was frustrating. Humbling. More than once I thought, There’s no way I’m going to be able to do this.
But each time my walls grew too thin or my cylinder lost its center, I crumpled the clay back into a lump, scraped the excess from the wheel and started again.
It took a few tries, but finally, working slowly, I threw a cylinder.
Will I be able to do it again next time? I don’t know. But I’m willing to keep trying until I learn.
That’s what it’s like for starting any project. Writing a first draft of a story. Starting a new painting. Sculpting clay by hand or on the wheel.
You don’t have to get it right the first time. Few people do. The magic happens in the revisions and later attempts.
So go easy on yourself. Give yourself the freedom to try and grace when you fail.
And never, ever stop learning.