Tammy R’s Story – Recovery from Levaquin Toxicity

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*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
  • Stress

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.

39 thoughts on “Tammy R’s Story – Recovery from Levaquin Toxicity

  1. L June 14, 2016 at 9:20 am Reply

    Out of all the ineffectual doctors I saw, the neurologist was the worst. And this was in 2015, when he should have known better. He pretty much said it was all in my head, because my many symptoms didn’t fit in to his narrow field of information. You are very lucky to have the kind of support system you have, and also not have treatment constraints from financial devastation.

  2. Tammy R June 14, 2016 at 9:54 am Reply

    L, I am very sorry to hear that you have treatment constraints. I think we all do have treatment constraints to some degree. There are many things others have tried that I did not due to financial concerns. I rely a lot on the less expensive treatments such as food, gentle yoga (downloaded on my laptop) and free guided meditations (Fragrantheart.com). To hear that any doctor says it’s “all in your head” to me indicates that they don’t know how to treat you. Instead of blaming you, I wish they would just admit, “I don’t have an answer,” so you could move on and find someone who does. I appreciate you taking time to share your thoughts.

  3. Abee June 14, 2016 at 10:44 am Reply

    Tammy, thank you for the wonderful post! Have you been able to get back to running? And initially at 1.5 years what was the driving point behind you leaving your full time job? I’m curious as now I’m almost at 1.5 years and am having a serious downtrend, and I’m very concerned. Did your initial turn around happen at 2 years more or less?

  4. tammyrenzi June 14, 2016 at 11:57 am Reply

    Hi Abee, I was working in a job that I felt didn’t help my healing. I felt that, if I were to decrease my hours and level of stress, it might help my healing. I chose 1.5 years because it coincided with the end of the school year when I had to put in my resignation. When I went to part-time, I started my tutoring business and worked part-time in the schools. We missed the money at first, but we downsized and simplified our lives and it worked out.I would say that somewhere between 18 months and two years out was the time when I started feeling better. It was 10 years ago, and I lost my notes from that time when we moved! (Darn it!) I wish I had the exact date for you! I hope this downtrend turns around soon. I haven’t been able to get back to running, but I am walking and love it!

    • LUCERO ROJAS June 15, 2016 at 7:06 am Reply

      Thank you so much Tammy for sharing your story!! It’s very inpirational and healing. God bless!

  5. tammyrenzi June 15, 2016 at 8:09 am Reply

    Thank you, Lucero! All the stories I read here were so helpful to me, and even if my story resonates with one person it is worth it. I hope you’re doing well today!

  6. Lucretia June 15, 2016 at 10:29 am Reply

    Thanks for sharing your story Tammy, it’s inspirational because I am going through a relapse going on 8 weeks and hope to find healing again. I was at 20 months from floxing and thought I was recovered. I started some intense workouts to get back in shape and did some digging in the yard and it set me back. Could you please email me at tadidiin2005@yahoo.com so I can ask you a few personal questions. Thank you.

  7. tammyrenzi June 15, 2016 at 10:36 am Reply

    I sure will, Lucretia!

  8. Lisa Jennings August 2, 2016 at 1:29 pm Reply

    I had CIprofloxin In Late April of this year. A few weeks later my knee was sore and tehn my hips and then my shins. I have been able to sleep only 20 minutes at a time before the pain hits me somewhere and I wake up. I did not know abou t this toxicity syndrome. I think it could be what I have. It could also be Lymes from a tick bite one year ago or the CIpro could have stirred up the Lymes. I am being helped by homeopathy. I would welcome hearing from people. I am now walking without too much pain. Thanks

  9. L August 2, 2016 at 4:09 pm Reply

    Yes Lisa, many of the side effects from FLQs are similar to those of Lyme Disease. When I was getting IVs for Cipro, a good 50% of the patients there were being treated for Lyme, and many of the treatment IVs overlapped, so you may want to look into that

    • Lisa Jennings August 2, 2016 at 11:37 pm Reply

      thanks you so much.
      I do not know which it is , or perhaps the cipro kicked off the Lymes.and i have only homeopathic treatment and what I do for myself as a nutritionist. I would like to know which cats claw if any you think works best? thanks again.

  10. tammyrenzi August 2, 2016 at 7:11 pm Reply

    Hi Lisa, I am sorry to hear you are in pain and feel it may be due to Cipro. You are right, it may be. I am not sure about a connection between Cipro and Lyme – if one can stir up the other, but there are many helpful people on this site that may have some insight.

    My best healer was time, taking walks, and maintaining a positive outlook that I will heal. If you are already feeling that things are improving, that is great.

    Please let me know if there is anything I can do for you!

  11. tammyrenzi August 3, 2016 at 8:02 am Reply

    Hi Lisa, maybe L knows about cat’s claw. I am sorry I don’t!

  12. L August 3, 2016 at 9:32 am Reply

    I have not used cat’s claw so couldn’t say, but the standard IVs that are helpful are high dose vitamin C, Myers, and hydrogen peroxide (or ozone treatment) among others

  13. Lisa Jennings August 3, 2016 at 10:06 am Reply

    thanks so much!!! I will get going on the C at once.

    • L August 3, 2016 at 10:13 am Reply

      That is the only one you will need a blood test for. There is a very small percentage of the population that cannot do the high dose c….(It’s also great for helping rebuild collagen and so many things…I’d be getting more if I had the money)

  14. Chris September 6, 2016 at 10:53 am Reply

    I found your story so encouraging to me, as I’m in the midst of my own relapse after 2 years. I’ve had flare ups but this isn’t clearing up as quickly. I have a very supportive chiropractor who’s helped me through every step. Initially I had seen 4 doctors, had numerous tests, all which were negative. I was looked at as some crazy hypochondriac. With this latest issue I broke down & went to an osteopath. After telling him my while Cipro story, he yelled at me & told me I was doing this to myself with too much exercise! I’m 65. I do yoga, stretch, walk, hike. I know my limitations & don’t overdue. I went away angry & in tears. Then I read your story. I know I’ll get through this but so often I feel so alone, like I’m the only one who is suffering. Thank you Tammy for helping me to not give up.

  15. L September 6, 2016 at 11:16 am Reply

    I get so angry when I hear people report that doctors have told them it is all in their head, they’re crazy, they are somehow bringing on all these side effects. They say these things out of ignorance, because what we go through doesn’t match up with the pro-pharmaceutical agenda they have been given. Next time, tell them to read Dr Cohen’s book “How to Halt the Cipro and Levaquin Catastrophe: The Worst Medication Error in U.S. History.” Dr Cohen has some biting critiques of these dismissive doctors.

  16. tammyrenzi September 6, 2016 at 12:41 pm Reply

    Hi Chris, I’m so glad you are not giving up! Believe me, I have felt the same way but, through the years, I have found lots of ways to heal myself. Good for you for continuing to do what your body will allow and finding what works for you. That is the best medicine!

    Please feel free to email me at any time if you ever want to have a private conversation. I know it sometimes feels like you’re “putting everything out here” on the site, but there are so many wonderful people who have helped me.

    tamrenzi@gmail.com

    Continued healing and happiness to you!
    Tammy

    • Chris September 6, 2016 at 6:11 pm Reply

      Thank you Tammy, I appreciate that & did email you.

  17. L January 10, 2017 at 3:31 pm Reply

    sorry if you already answered this, but what do you think caused the relapse? do you think it was solely the running?

    • tammyrenzi January 10, 2017 at 4:56 pm Reply

      Hi L, it seemed to be the running. I also found out I was deficient in vitamins D, B1, E, and iron. That could have played a role. Now that my vitamin levels are up, I feel much better. I will not run again but I do walk 4 or 5 miles a day.

  18. L January 10, 2017 at 5:13 pm Reply

    I have heard so many relapse stories, I hate wondering if one is around the corner. I was also surprised to see my D levels were low recently, because I had been taking 2,000-4,000 daily. My new integrative dr has me on 10,000 for now.

  19. tammyrenzi January 11, 2017 at 7:40 am Reply

    L, although I can certainly understand why anyone would fear a relapse,the relapses were not like the initial reaction. I have to refuse to live my life in fear. If I do have a relapse, I will heal again. I’m on Rx Vitamin D2. I think getting my levels in the recommended range (under the supervision of my neurologist) has really helped how I feel. We are all so different, but one thing I think that will work for all of us is to keep our anxieties and stresses at a minimum, do what we can with every given day (no matter what that is – from getting dressed and enjoying a favorite beverage to hiking a wooded trail), and find the plan that works for us. I love to hear what others are doing, but I haven’t tried many of the things others have. Time has been the best healer for me.

  20. Lisa Jennings January 11, 2017 at 10:10 am Reply

    Just wanted to check that you are using D2…It should definitely be D 3…NOt D2

  21. tammyrenzi January 11, 2017 at 10:53 am Reply

    Hi Lisa, It is D2. I know that most people use D3. This is under the advice of my neurologist.

  22. L January 11, 2017 at 12:16 pm Reply

    My integrative internist recommends D3 and K2

  23. tammyrenzi January 11, 2017 at 1:36 pm Reply

    Thank you for mentioning that, L!

  24. Lisa Jennings January 11, 2017 at 2:26 pm Reply

    I don’t want to upset andone but it is wrong. Here is one of many studies.. I am sort of an expert in Vit D.
    http://ajcn.nutrition.org/content/84/4/694.full

  25. tammyrenzi January 11, 2017 at 7:38 pm Reply

    Lisa, I really appreciate you sending this. I am going to read it right away. Thank you!

  26. Lisa Jennings January 12, 2017 at 3:23 am Reply

    great .. >it is simple and powerful thing to change. you should have no less that 5000iu a day . But if you will send me your D levels on your blood test with all the attached letters and numbers I will give you the correct dose for you.It is really really improtatn and thanks for writing back. I know pretty much everything there is to know about D and supplements.
    thanks
    LISa

  27. tammyrenzi January 12, 2017 at 7:36 am Reply

    Hi Lisa, would you mind emailing me at tamrenzi@gmail.com ? I can then email you my numbers. Thank you so much!

  28. Deb November 12, 2017 at 6:03 pm Reply

    Tammy,

    I think you recovered using foods and foods to detox. Is that correct and if so what foods did you use to detox? Thanks.

    • Tammy November 12, 2017 at 7:26 pm Reply

      Hi Deb, I didn’t use foods or detox to recover. During my initial “floxing” in 2006, I continued to eat the same. I wasn’t able to tolerate alcohol or caffeine, so I avoided them. When I had a relapse in 2014, I tried a raw food detox for 28 days. I did start to feel better, but I’m not sure if that was just because of time and the fact that my symptoms weren’t as bad as in 2006. Currently I eat a plant-based diet (no meat, dairy, eggs), and I take supplements (my doctor tested me, and I was low in D, E, B1 and Iron), and I am doing well. I am not eating this way because of Levaquin but just for my health in general. It works for me, but I would not say this is a diet that will heal fluoroquinolone reactions or recommend it to others for that reason. If you have any further questions, you can also email me at tamrenzi@gmail.com. Hope you’re feeling better soon!

  29. Deb November 13, 2017 at 7:38 am Reply

    Thanks much Tammy!!

    • Deb November 14, 2017 at 7:06 am Reply

      Hi Tammy,
      What did you do to recover from your initital floxing in 2006? Thanks!

      • Tammy November 14, 2017 at 1:20 pm Reply

        Hi Deb. All that I did to heal is included in my story above. For the most part, and because I didn’t have any resources, I just let time pass and did not overdo it. I did take Klonopin (a benzo and not recommended) and Neurontin to help my nerve pain. I didn’t take supplements at that time (though if I had been tested, I may have been deficient). There was no magic bullet. I just had to let time pass and remain hopeful that I would heal.

        After I healed and during my relapses, I found meditation and MBSR (8 week course) to be very helpful. I learned to tune in (without panic) to what is happening with my body and get back to exercise a little at a time. For me, running will not be an option. I am ok with that. There is plenty I can do to stay fit.

        Hope this helps!!!
        In healing,
        Tammy

        • Deb November 16, 2017 at 5:30 am

          Thanks much Tammy. Glad you recovered!!!

        • tammyrenzi November 16, 2017 at 5:54 am

          Thank you, Deb. I want the same for you too. It’s been a get up close and personal experience with my body I would not wish on anyone. I am here to correspond with if you need to share, vent, or anything else. Healing hugs to you!

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