How Levaquin Tried to Kill Me, but I Fought Back

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img_5379I 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.
    • I found CoQ10 helped with my energy levels. I splurged on two months of MitoQ and felt a big difference. Because it’s expensive, though, I switched to Jarrow’s brand QH+ PQQ. I also found it effective.
  • 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.
    • 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.
  • Acupuncture
    • 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.

6a0ff12746a60b5ec15ab5d692ad4d8e.jpgI’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.

img_5786I’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