*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.
I was first given LEVAQUIN at age 26 when I had endoscopic surgery of my sinus. After that, my ENT doctor would prescribe me LEVAQUIN every time I had a sinus infection for the next six and half years. Everything went hay wire the last time I took it at age 32. During the six and a half years I took it, it had not affected me like it did when I took it at age 32, in March of 2011. At age 32 I came down with a very strong sinus infection and would not go away so I took LEVAQUIN and I became very ill. I woke up one morning and the back of my head felt numb. I panicked and as I proceeded to my living room I felt tingling all over my head as if someone were pouring water inside my brain. I was blacking out and so I called EMS with my cell phone and my family with my house phone and sat on the couch. I immediately thought I could possibly be having an aneurism. Once EMS arrived my blood pressure was elevated and I was shaking. Once I got to the hospital they ran many tests and did not find anything. The only concern was that my liver count was a little elevated and was advised to continue to taking LEVAQUIN. (In the past I had read on the possible tendon tears and told myself not to use again, but I did because I trusted my doctor), so I continued taking it despite the fact that from my knees down it was very difficult to walk and felt very heavy. I began to have a lot of anxiety and my doctor prescribed Xanax to me. So many strange things were happening and EMS took me again to the hospital weeks later. Again, they did not find anything and sent me home. I woke up one morning and my entire body – from head to toe – felt very numb. I could walk but it was very difficult. I could barely shower so I went to my doctor and immediately they took me to a Neurologist and ran an MRI of my brain. For the next two weeks they ran many tests and I had to go on Medical Leave. All of my tests came back normal. The neurologist said my brain was/is perfectly intact. The only deficiency I had was in vitamin D (count was 19). So basically the neurologist told me I had experienced some toxicity in my body and there was nothing to do about that but that the body would resolve itself. My family at this time feared I might have MS or a very serious condition but that was not the case. All of this was very difficult because I felt like I was jumping out of my own skin, it was a very horrible feeling. Everything seemed different. My general doctor told me no medicine what so ever for a while. I only took B12, Vitamin D, and melatonin to try and sleep a little bit. I had a constant feeling as if I were dying.
After six weeks I began to make small progress and returned to work and was off for the summer. During the summer of 2011 I attended physical therapy but it was very hard for me to do much. My body was very stiff. For an entire year I took Vitamin D and some B12. I began to eat very healthy and live life very simply. I was not able to sing any more or be as active as I was before.
Then, my second year of recovery I did not take any more supplements. I reacted to everything. My stomach kept getting worse with vitamin D. At exactly two years, I had a very bad relapse but came out faster than the first time. My vitamin D level was low again (17). I had another MRI of brain, neck, and spinal cord. Everything came back normal. Again I had to go on medical leave and in six weeks I returned to work and then I had the summer again to keep getting better. I was put on vitamin D supplements again for another year and after a full year I began hurting so much. So I stopped. All this time I kept thinking it was just perhaps stress and low vitamin D.
Then I finally researched what my gut was telling me and I went back to the basics of LEVAQUIN went to my ENT and told her, I know what happened to me, I had an adverse reaction to LEVAQUIN!!! She said, yes I always had a suspicion that is what happened to you and it is just going to take time to recover. I told her I just want to get better. She cried and hugged me and told me she was sorry. I told her, just help me get better. By this time I had come across FloxieHope.com and was communicating with Lisa. I presented my doctor with all kinds of research and she seemed very nervous. I told her I’m not mad, I told her she was human just like everyone else. So ever since this moment I realized LEVAQUIN is what went wrong in my body. I must have taken over 60+ pills. So I can imagine that my recovery will be longer than most. This all happened in October of 2013 -This is when I realized that LEVAQUIN went wrong in my body and not a result of vitamin D deficiency. This is when I began to be very aggressive with my recovery. I began acupuncture and improved my diet. My job as a teacher helps me so much!!! It has been very hard to work these past 3 years but I have been able to! I praise God for His strength and I’m blessed to have my parents help me very much. I have been one of the best teachers in these past three years. We are now in March of 2014 and I have begun to use Doterra oils and I have seen some results but it is still early to tell their full benefits. (One thing I forgot to mention before is that during my first year of recovery, I had to get tubes in my ears since I couldn’t take medication for ear infection).
Symptoms I Had:
- Abdominal and stomach pain which started at two years of use but didn’t see the connection
- Agitation
- Feeling that others can hear my thoughts
- Fever
- Pain, Inflammation, Legs hurt a lot, Calves hurt, Feet hurt
- Redness around neck area and swelling for about 3 years—now I know why
- Sensation of burning on the skin
- Itching
- Blurred Vision
- Tired and burning eyes, as well as red
- Difficulty chewing, talking, and swallowing
- Drooping eyes
- Fast heartbeat
- Hoarseness
- Joint and Muscle Pain
- Muscle Spasms, Pain, and stiffness—Weak hands could barely lift anything
- Dizzy
- Tired
- Exhausted all the time
- Tightness in chest
- Unsteadiness or awkwardness feeling
- Feeling faint
- Loss of the ability to sweat
- Peripheral Neuropathy
- Numbness
- Nausea
- Lightheadedness
- A little elevated BP
- Insomnia—Worse the first year, with little improvement the second year
- Feel very heavy from knee down
- Brainfog- Hard to read the first year
- Weak voice
- Anxiety
- Loss of sensation in eyes—freaked me out at first
Symptoms still present
- Peripheral Neuropathy
- Pressure in Head and Numbness
- Tightness in head and calves
- Shoulders, legs, neck, and feet hurt or bothersome
- My neck is weak
- Can’t tolerate medicine or supplements
- Trouble Sleeping but not as much as before
- Weak Muscles—I walk normal but I feel I walk strange inside
- Some stiffness
- Very little twitching
Things that have helped
- Healthy eating. I have eliminated caffeine, excess sugar, chocolate L only eat it once in a while, treat myself to dessert sometimes. I only drink water all the time.
- My faith in God.
- My career
- My family
- Sunshine
- Shopping Therapy :p
- Cherry Tart Juice
- Lots of herbs—Ginger and Lemon, Peppermint, Arnica, Chamomile
- Lavender oils—Doterra, DZ
- Acupuncture
- FloxieHope.com
- My doctors validating that LEVAQUIN did this to me
- MUSIC—I am a singer—lots of music
- Daydreaming that I will sing again and pursue a promotion as a school principal one day!
- Believe with all my heart all this will pass and I will be whole again! When? I don’t know but it will happen!!!
- Stay calm and not stress
- Simple living
- Walks to the mailbox
- Walks around the neighborhood and treadmill
- Watch lots of chick flicks because I know God will bless me with a beautiful wife and kids one day!
- Watch all the music shows! The Voice, American Idol, America’s Got Talent, The X Factor.
- Be as social as I possibly clan
- Get Up, Dress Up, and Show Up no matter how I feel
- REST, REST, REST as much as I can
- Read inspirational books
- Wrote grants for my classroom which I got and made me feel good
- Baking when I have good days
- Stay FOCUSED on my recovery!!!
Life Now:
Well it has been three years since I became ill with the LEVAQUIN blues! I can do a lot of things, but I still can’t do a lot of things. I am much better than before. I feel about 65-70% recovered. I have much more power in my voice and can sing a little bit. The first two years my parents would stay with me a lot but now I stay by myself and do all my house chores and work successfully as a first grade bilingual teacher. I eat a very healthy diet and try to eat a little bit of everything. I eat dessert sometimes and chocolate very little. I’m not afraid of dying anymore and I get in my car and go shopping. I go to the grocery store and buy lots of organic food. I still have very bothersome symptoms and don’t quite feel like my old self, but I can laugh and smile more. I now believe I can reach 100% recovery!
Before being floxed I was in a hurry to live life. I was always over-committed, an overachiever, in a hurry, did not take time to just sit and relax. (I was on my way to getting my Doctrate degree— I don’t want one any more)! My mission was to become a school principal and keep moving up the ladder. Now I am so grateful to just teach, I know I will become a school principal one day, but I am not in a rush to get there right now. I know it will happen when it needs to happen. No matter what I get up, get dressed, and show up! I still have a ways but I will get there, I know I will.
I am most concerned about being able to sing strong tenor notes again and be a part of my church choir and music ministry. For a time a felt like I was going to end up in a wheel chair but I know now my legs need more time to heal. I don’t stress about comparing my recovery to other floxies. My recovery is mine and mine only and it will take me as long as it will take me. My neurologist who at first thought I was crazy is on my side now and helps me every way he can and told me it would potentially take me 5-6 years to fully recover and told me that a day would come where all the symptoms would just go away. CNS, tissue, tendons, ligaments, etc… are extremely slow to heal. He said I’m healthy and young enough to recover. I do a lot of nice things for people, makes me feel good! I’m very positive and an encourager. I live life as best as I can and try to do as much as I can. My suggestion to you all is to keep on keeping on. One day everything will pass! When? I don’t know, but it will. I’m right here with ya!!! It’s a process, it’s a journey! I know I will never take things for granted anymore! I know God has a very special plan for me and He has a special plan for you too! I always wake up every day saying, “one day closer to my full recovery!”
** 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, effect 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.
Diego, your words have make me feel so good. Thanks. I was floxed with Cipro and Avelox. I hope I can soon have my story ready for Lisa. She has helped me so much as well. The thing that caught the most attention to me it is how you describe “I felt like I was jumping out of my own skin, it was a very horrible feeling” I try to explain this to my wife so many times and I couldn’t. I tall her I feel like if some one push my soul out, like if some shake me once hard but from the inside out. God is with us,
El Pollito Delgado that is exactly the feeling. Tu hablas espanol?
Love your story and your positive attitude. The other day I was describing my feelings initially and up to this day, and said “it was as if the life force in my chest was taken out of me…what internal organ is that?” It’s good to hear what your neurologist said that the healing takes time. I especially like #24…hard to do sometimes, though. Thank you for sharing!
I’m Lisa’s mom (Floxiehope) and am so glad you’ve reached out to her. She is very empathetic and has lots of great suggestions for you. Hugs.
What an amazing story Diego!! I also teach school! Thank you for the inspiration!
What a wonderfully positive person you are! This is exactly the thing I needed to read today. I have been finding it hard to be positive lately. So Thank You so much! God Bless You, you have renewed my Faith!
THE ONLY DREAM I HAVE IS TO HAVE MY VENGEANCE ON THE OTHER SIDE. GOD WILL SURELY PUNISH THESE EVIL PEOPLE.
Good for you man. I’m happy to hear some docs gave you recognition, courageous move on their part.
Can you elaborate on your ear surgery post being floxed? Did you get general anesthesia? If yes, did you have to request a certain type, or be sure to avoid a certain type? I had an adverse reaction to cipro in March 2014 that lasted about a month and still has some mild symptoms (fluttering in lower legs, but does not hurt anymore) — and I am scheduled for needed but not urgent surgery next week. I am not finding much about the wisdom of getting general anesthesia after having been floxed. At its worst my cipro symptoms included fasiculations in lower legs; tingling/not really pain but obvious sensation fluttering throughout lower-thight to ankle; extreme anxiety; zero appetite -lost 10 pounds in 3 weeks; wildly fluctuating blood pressure and heart rate, even while sleeping; mild but obvious cramping in my calves.
Any other sites or anything you are aware of about the anesthesia question would be much appreciated. Thank you.
I didn’t have ear surgery! I only had tubes put in my ears to drain! All my ent doctor used was hydrogen peroxide. I have not used any type of anesthesia post flox.
Diego,
I have been wanting to respond to your inspiring story for awhile, but lately typing on the computer flares my symptoms. Today I felt I would write to you anyway.
I teach K4-8th grade music at a small parochial school, so we have much in common. I worried at first that my voice had been affected. But maybe the laryngitis was just from the sinus infection for which I took the Cipro. It eventually went away and my voice is back. I find singing and playing the flute help with my anxiety symptoms– it’s the deep diaphragm breathing, I think. Deep, chest expanding breaths activate the parasympathetic nervous system. My sympathetic nervous system is still going a bit crazy from the Cipro, but it’s getting better.
You have so much courage and I hope that you continue to get well.
I taught my students a song called “Nothing Can Keep Us” which is all about how nothing can keep us from the love of God. It was an amazing comfort to me, hearing their little voices singing it. I got if from the book Lift Little Voices by Carol Greene and Deborah Carter. It’s published by Concordia Publishing House. It says it’s for Pre-K through Grade 2 on the cover, but I have used a lot of the songs with my older students also. There are some good Easter ones in there, very suitable for older kids. You might want to look into it for your music ministry. The songs are so good, you might just enjoy it for yourself. I sing “Nothing Can Keep Us” when I need that reminder: “Dangers at home and dangers far away, We know that we are going to be ok. Nothing can keep us from the love of God.” (It’s got a nice syncopated little melody to it, very catchy.)
Ruth
Ruth Young, it is so good to hear that you are doing better also. My students keep me going. I sill haven’t gone back to singing but when I’m better and stronger I will sing again. My voice too continues to improve. I’m hopeful I will be able to continue being a tenor! God Bless You!
Diego, I have a question for you regarding about the TB shot that is required for teachers. I teach and I am worried about the TB shot causing more problems. Did you have this shot and did you have any reaction to it? I am glad you are doing well. Your story is very inspirational.
I had the TB shot years ago. Before I got really sick with Levaquin. I had taken levaquin for about six years every time I had a sinus infection. It was during these years I took the TB shot.
Laura, no my school district does not require the TB shot.
Diego, Glad to hear you have some recovery. Sounds like me. I too also took about 70 pills in a short duration (4 weeks) for prostate infection. I noticed you were trying the Doterra oils. How did that work out?
Your symptoms are so similar to mine except I have neurally mediated hypotension as well. The first five months I was sick, I couldn’t get off the couch without almost passing out and had s horrible “fog” in my head. So scary. It’s been a year for me and I am slightly better. I don’t believe any of my doctors want to admit this is what happened to me but currently counting on my acupuncture treatments for help. Thank you for sharing! Take care and hang in there!!
Diego, I am inspired by your story and can’t believe how much you endured. I took levaquin as well about 7 weeks ago. I started out w a severe psychological reaction, that subsided . Now I have a lot of leg, feet pain which seems to be getting worse. I hear some people have to get worse before they get better, I just don’t know what to expect at this point . I’m thankful I can still work part time and carry on as usual for the most part. Hope you are still doing great 🙂
It was great reading this. I am 5 months Cipro after 10 day use and I have been experiencing bad anxiety and depression.
Hi Diego
I didn’t know you where from San Antonio. I’m here to. Can I ask what doctors you see. I just listened to you’re podcast. I use military doctors but they don’t believe me so even if I have to pay out of pocket it would be worth it to have somebody believe
My symptoms ate very similar to yours. I think my head is the worst though.
Loved you’re podcast.
I’ll check back here for s reply or you can e mail me at
Melglove@hotmail.com
Thanks Diego