Jayne’s Recovery Story – Levaquin Toxicity

Recovery from Levaquin Side Effects

Jayne’s story, written by Jayne:

In January 2011, I’d suffered a series of stressful events, culminating in a failed real estate deal that left me crying and surrounded by moving boxes. I knew I’d pushed my body and spirit beyond where I should, but I had no idea how badly both would soon break down. I wanted to go to my favorite spa and lie in a hammock for a week, but decided to go to Disneyworld instead.

Please know that I’m a runner at heart. I was running about 15 miles a week at that point—not a ton and not terribly fast, but running was a spiritual and mental practice for me, a huge part of who I was. The last run I took before I got on the plane was followed by a dark chill that swept over me. I had a strange feeling that I might never run again. I shook it off, because who gets premonitions other than women named Rebecca in gothic novels, right?

Either food poisoning or a GI virus hit me hard in the magical kingdom. Let’s just say the restroom wasn’t the happiest place on earth when I was done with it. I went to the ER, thinking they would just hydrate me so I wouldn’t pass out (which has happened to me with prior GI illnesses). The doc was a second away from injecting Levaquin into my IV. I stopped him, saying my brother had ruptured his Achilles after Levaquin. He said Cipro was less likely to cause that. I thought it was a rare thing that of course wouldn’t happen to me, and my brother is a big athlete who played softball and football. I was just a runner and a hiker, and I didn’t know what tendinopathy was. So I agreed to take Cipro and Flagyl.

I felt weird and spacey on both drugs but tried to stay on them. I ended up back in the ER because I was scared to fly home feeling so off. While in the ER, I developed akathesia—uncontrollable urges to move my body. The ER docs were too busy or clueless to figure out what was wrong. I think they gave me Benadryl and Valium and told me I was fine. Um, yeah.

When I got back home, I forgot to take the antibiotics one day and felt suddenly tremendously better. I stopped taking both drugs completely. Later that night, I felt like someone had beaten my calves with a baseball bat. That’s when I knew something was really wrong.

A week or two later, the tendinopathy started (severe in both Achilles, milder in the tib and other tendons, moderate in my knees.) I’ve always been a terrible sleeper, but this got way worse. I’d lie awake as pain spread through my tendons and joints, or I’d wake myself up with my joints popping every time I moved. Then came the wailing wall—crying, depression, anxiety, fear: CNS side effects. I was limping everywhere. I couldn’t walk ¼ mile, couldn’t walk through the grocery store without feeling like I’d fall over, could not make it through a day at work because my Achilles would swell and hurt and get weak. I had to work at home for a couple of months—a career-buster for sure. But I had no choice. I wasn’t getting better—I was getting worse.

I thought at times I would lose my mind. I thought at times I HAD lost my mind. I cried a lot. The pain was unreal at times. One night, it felt literally like someone was carving the tendon of my left forearm. I think I tried to deny it, but being floxed was really that terrifying and painful.

It’s now August 2013. This summer, I hiked 7 miles up Mt. Rainier. I now intersperse my walks with runs. I don’t run as far or as fast as I used to, but I can feel my calves getting stronger. My cardio has tremendously improved. I lift weights for my upper body, do core strengthening, and hike regularly.
I still don’t sleep well, but then, I haven’t since I was a baby. I still have some pain in my Achilles and knees when I push myself, but I push anyway, knowing I need to make them stronger. I get weird shooting pains, but maybe I had those before—I don’t remember. I consider myself 85% recovered. And I am tremendously grateful to be able to do the little things, like take walks with my guy and the dog, walk to the store to get a soda, or run to catch the bus.

My unsolicited advice to floxies as you heal, delivered with compassion and love and understanding:

1. Do not identify with your illness. Do not adopt a persecution complex about how the medical industry done you wrong. This will feed your symptoms. Do you want to get better, or do you want to be a victim?

2. Do not read stories about suffering fellow floxies. This will only make you worry. Your anxiety is likely already bad enough. DO read stories of healing, like this one.

3. DO invest in your life as much as you possibly can. (We took a trip down the Oregon coast when I was still hurting and limping badly. I couldn’t yet run or even walk on the beach, but I could smell the air and watch the waves. It helped more than I can even say.) Stay engaged with what brings you joy: friends, family, hobbies, whatever exercise you can manage. It’s OK if you do those things a little differently. Go to a museum but sit regularly on the benches and stay just an hour. Go to a baseball game but park in the handicapped spots close by and take the elevator. Modify but don’t abandon your life.

4. Don’t present yourself to the world, especially the medical world, as a medical-phobic weirdo who thinks that Big Pharma is poisoning you. ALL my doctors, physical therapists, and pretty much everyone else believed that Cipro caused my injuries. Present yourself as a rational being who needs help, as I did. Tell your doc if he doesn’t believe that FQs caused your symptoms that you disagree, but will he help you get better anyway? And if people don’t believe you are sick or that FQs caused it, brush them off. You know your body.

What worked for me:

1. Physical therapy. I had to start over a couple of times and I did have setbacks. But I kept going. Ultrasound therapy was the closest thing to a miracle for me. I could feel the difference in my tendons immediately.

2. REST. REST. REST. I hated hearing this. I was a runner. We don’t rest. But rest helped tremendously, just as it does when we have the flu. Sleep as much as you can and need to.

3. Custom orthotics and night braces from the podiatrist. Expensive but worth it. I still need insane amounts of arch support. I’m sorry that flats are popular now, because wearing them even to the mailbox would hurt. I still have to wear hiking or running shoes with lots of support much of the time. Cute shoes are generally not possible for me, though I do still wear my boots on occasion.

4. Whey protein and vegetarianism. I am now terrified of antibiotics and other crap in meat. I drank Muscle Milk after PT sessions, which seemed to help. Remember that even “organic” meat is inflammatory and hard on your kidneys.

5. Avoiding supplements. They did not work and often brought on their own symptoms. Fish oil made me terribly nauseous and sick. Glucosamine made me bruise easily. EGCG seemed to do little or nothing. Epsom salt baths made me hot and itchy. Fruits, veggies, whey protein, green tea, and lots of water seemed to help a little. Supplements are largely snake oil for the desperate. Don’t waste your money.

6. Patience. I have virtually no patience and am legendary for this character flaw. But I was forced to be patient because I had no choice. Once the FQ stops telling your body to create weak tendons, you have to build those tendons back as strong ones. It takes . . . .

7. Time. You’ll hear this over and over and want to smack people who say it. But recovering from some injuries and illnesses really does take time. I’m not sure if this is harder or easier for those of us on the athletic side of things. But the waiting and struggling is hard for everyone. It’s not unusual for tendon injuries to take a year or two to get better.

8. Expecting setbacks. Yes, expect them, because they will happen. They are normal. The body and spirit don’t heal on a linear basis. Healing is jagged and unevenly paced. Maybe the cycles are telling us to chill the heck out.

9. Refusing to give up. Some floxies have recovered after years of being injured or sick.

10. See #9. Don’t give up. Rest, but keep fighting.

** 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 their stories, 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.

14 thoughts on “Jayne’s Recovery Story – Levaquin Toxicity

  1. shortsweetcook August 26, 2013 at 11:33 am Reply

    Can you tell me how long the akathesia lasted? I didn’t know what it was called until you just named it, but that is the only symptom I have except of course insomnia! Because who can sleep when they want to move their body all night.

  2. Jayne August 26, 2013 at 2:17 pm Reply

    Hi shortsweetcook, the akathesia lasted just a couple hours in the ER. It’s possible the Benadryl or even the Valium eased that, but I don’t know.

    • jb April 30, 2014 at 4:48 pm Reply

      hi jayne, i hope you are doing well and hiking more and more. I’m wondering if you ever had problems with your hip that made it difficult to walk or caused you pain at night or even prevented you from sleeping on your side. I’m told i have “fluid on my hip” and have wondered if it’s from not walking much or walking awkwardly since i try not to put pressure on my knees, or if it’s just damage done by the drug. I would love to know if you also had hip problems that possibly cleared up in time? thanks. jb

  3. Anna Zolotnitskaya, MD August 27, 2013 at 11:11 am Reply

    T
    hank you for your story. I am so hungry for these kind of stories. This morning I had to drag myself to see patients. It is incredibily hard but your story is giving me hope… I was a runner as well.
    Anna

  4. Brooke Keefer August 27, 2013 at 12:24 pm Reply

    Thank you, Jayne. I am relying on these stories of hope to get me through this. You are right, some of the Internet stories can be anxiety-producing. I try to limit viewing to sharing what helps me to other sufferers. We need not ever forget where we were and continue to always help each other. Thank you especially for accurately describing the tendon pain you had as that is exactly how mine felt/feels. I tried describing it to the doctors and family and they always looked at me perplexed. I am nearly 11 months out and have seen some improvement from symptoms. At least I can go in the sun now, shop, go on the elliptical for about a mile, and keep up with my 2 year old. I still have chronic pain, but have noticed my nerve and tendon pain are exacerbated by foods. I literally can feel a floxing reaction while eating. High histamine foods, DAO blocking beverages/foods, and histamine liberators are the worst offenders. I am trying a low histamine diet, taking antihistamines and zantac, which, surprisingly, is a histamine blocker. I am feeling “baby steps” relief and hope this continues to help me. Thank you and hugs!

  5. Nick September 15, 2013 at 10:07 pm Reply

    Thanks for the encouraging story. I was slightly alarmed by your endorsement of Muscle Milk, though. If I’m not mistaken it’s one of the very many protein drinks that are sweetened with acesulfame potassium, which has been strongly linked to cancer, especially breast cancer. There’s plenty of info on the WWW about this, so I won’t try to repeat it. Just a suggestion that you watch out for that. There are other protein mixes you can get that are sweetened with stevia, which seems to be much safer.

  6. Crystal December 26, 2013 at 10:33 pm Reply

    Hi Jayne,

    I was wondering if the popping of your joints resolved? If not, did it ever progress to pain? My main complaint is popping now, I haven’t heard much about it resolving.

    • hicham February 23, 2014 at 1:29 pm Reply

      I would like to know that too. it’s getting worse for me.

  7. Carolyn S March 23, 2014 at 2:30 pm Reply

    Thank you for sharing your story. I was floxed in 2008. Having over 30 side effects, many of which you’ve mentioned here, I have made a full recovery. I am healthier and stronger than I have ever been. I have to disagree with your statement that most supplements are snake oil. There are companies like Metagenics (EC Matrixx is amazing) and Amazon Herb ( their Camu Camu is a proven almost cure-all for neurological problems, herpes, cancer etc.) I took both of these and saw an immediate improvement that increased over time. My advice to anyone suffering injury from Quinolones, is get yourself a good homeopathic doctor and tell him/her to prescribe nerve salts and nerve remedies according to your constitution (which they will determine in one visit if they are the real deal). I wish you all the best.

    • Lisa Bloomquist March 23, 2014 at 6:50 pm Reply

      Hi Carolyn,

      If you are interested in writing up your recovery story for me to post here on Floxie Hope, I would love, love, love to hear it and to share it with fellow floxies. If you’re interested, please email it to me at floxiehope@gmail.com. Thanks and congratulations on your healing!

      Lisa

  8. Ruth Young April 10, 2014 at 3:31 pm Reply

    I used to work as a PTA before getting floxed. I had a home ultrasound machine before this happened. It gets a lot of us now. I agree with you– the ultrasound is just a miracle. It’s nice that I can do it before I go to work in the morning, or whenever I feel tightness starting somewhere.

  9. Jayne May 16, 2014 at 1:48 pm Reply

    JB, I did have pain in my hips off and on, but I don’t particularly notice it any more. No significant persistent damage seems to have been done. I had a lot of widespread pain back then, but it’s eased probably 95%. I have done some more intense hiking and did not feel a darn thing in my Achilles last month.

    Crystal and hicham, yes, the joint popping got much better. It did not lead to pain. I’d say it took a few months to resolve. Popping doesn’t mean something is dramatically or seriously wrong with the joint—popping is just popping. Though during a floxing attack, because your tendons and ligaments might be weak, I think it’s probably good to protect the joint from harm (bracing, being gentle, not doing extreme yoga, etc.) At least until you can re-strengthen them.

    The frustrating part is that many of us seem to get worse before we get better. I sure did. The FQ needs to be done with your body before you can rebuild it.

    I remain firmly cautious and skeptical about the use of herbs, which are not proven and dangerous at worst. Homeopathy violates the laws of physics, and as such, is a complete waste of money, unless you believe in magic water. Please don’t give people false hope.

  10. Liz July 13, 2014 at 8:13 pm Reply

    Hi Jayne,

    Thank you for your positive message! As a former ~15 mile a week runner myself it is very good to hear. When did your tendon issues begin to resolve? I’ve been having major issues with my peroneal tendons, posterior tibial tendons, anterior tibial tendons…pretty much every tendon in my ankle! The worst is probably the posterior tibial tendon and I have to wear arch supports all the time. Did you have those issues as well? Thank you!

  11. Jimmy July 16, 2014 at 11:06 am Reply

    Hi Jayne, I often read your story over again for hope. Once again I really appreciate it. You mentioned that you seem to get worse before you got better… I’m now almost 14 months out and feel like some of my problems have diminished or completely resolved but I have many more new ones. In fact I was walking great just seven months ago and then in January I had a bit of a relapse and now I have pain in my gluteus medius and minimus. In fact my orthopedic doctor just didn’t ultrasound and I have tendinosis in those two tendons. On a positive note, the fluid on my hip that was there seven months ago and also the micro tears in my groin tendons have disappeared or healed. But right now, I can only walk a few hundred yards each day. And the CNS symptoms seem to have hit me hard in the past week really for the first time since the first and second month. I have a little bit of dizziness occasionally, and also when I read it feels like my head is vibrating. This is lasted over a day now. I’m just wondering if any of this sounds familiar? And did you have some pretty severe CNS symptoms even a year or more after being Floxed? And can I ask what brand of whey protein powder you took? I’ve had great success with a plant-based protein powder but might want to also try a whey powder and alternate? Thanks so much! Jim

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