Emily's Story

     I'm an RN...My first experience with Levaquin was in 1998 for a sinus infection. No other medications were tried first. Although for sinus infections in the past I had taken Amoxicillin...with resulting yeast infections. I was told that Levaquin had relatively few side effects and was a more suitable drug for me. I don't remember having an adverse reaction with that first RX...or rather I had no symptoms that I would ever attribute to an antibiotic!

     In 1999 I was again treated with Levaquin for sinus infections. I was in the midst of the 10 days prescribed when I slipped and fell while running in the rain to catch my dog. I went to the ER the next day with weakness, pain in my upper back, shoulders and neck. I was given pain meds, a C-collar and sent on my way. A short time later I started having increasing pain in my left shoulder, down my arm into my fingertips. So much so that I returned to the ER for an EKG etc. to rule out cardiac involvement. My EKG was fine. I was told it was probably a result of the fall and would heal over time.

     Over the next year and a half I know that I refilled the Levaquin at least 2 more times. I was told at some point by my MD if the sinus infections continued I'd need surgical intervention. I also continued with the left shoulder/arm pain and neuro symptoms. I was tried on a 10 day course of high dose Prednisone and had to take myself out of work for a couple of weeks. I was having the weirdest sensations, I became so forgetful, I had trouble completing a sentence or thought, and I thought I was loosing my mind. I recovered after I was tapered from the prednisone.

     I made the rounds to all of the specialists, ruled out for MS as I was also having intermittent weakness in my legs. And had developed a new neuro symptom in my left leg, whenever this area was touched it would send shockwaves into my toes...much like my left arm, only to a lesser degree. All of the referral Physicians I saw were left scratching their heads...some sort of mononeuritis multiplex, collagen or vascular disorder. The first EMG showed significant nerve injury in my left arm. At last, proof that I wasn't a med seeking nut case!

     Through all of this I continued to work as an Orthopedic RN. I believe it's the most strenuous type of nursing there is. I had some personal tragedies, deaths of my Father and Niece, and divorce after 20 years of marriage. One of our issues was that my Ex-husband had difficulty with my illness. (I also have Ulcerative colitis, currently in remission) Well, work became very difficult for me. I took several months off; I remarried and added 3 more children to my household. I found an IV RN position where I could basically work from home via computer, driving to see 4-5 patients daily. I was doing better! I was taking Ibuprofen and applying heat nightly for the pain and I had a pretty good year and a half.

     Then I developed another sinus infection...I saw my MD on June 28, 2004. I work for my I get a discount on medications. My RX was for Levaquin or equivalent. Because of cost considerations I went with Tequin (400mg) daily. I took a tablet that afternoon, and another the next morning, I was also taking Ibuprofen 600mg every 6 hours. That evening I was still laying low with sinus issues. Lying on my couch...heating my left arm with the heating pad...(A normal evening). All of sudden, I realized that both of my shoulders and arms were burning, like when you bump your funny bone combined with falling asleep. Both of my feet, up to my shins were also asleep. As the pain continued, it seemed to only increase in my left arm. It frightened me beyond words. I thought about going to the ER...then thought again, it was very late...what would they be able to do to help me?

     That was a sentinel moment for me... In the past I had searched the Internet for answers (never thinking it was an antibiotic issue) and had found none. That evening, after taking only 2 doses of Tequin, I went to my computer. I Googled: “tequin adverse reactions”. I just sat there stunned, as I read the information. I'd finally found the answers, after years of searching. I didn't sleep that night. The next morning, the terrible pain still there on the left, abating on the right, completely resolved in my feet. I was excited; I now understood and shared the news with family and friends. Hallelujah!

     I didn’t take any more of the Tequin and saw my MD that day June 30, 2004. I felt he was a bit reserved about my findings. Stating he'd never heard of these side effects associated with Tequin or Levaquin. He changed my abx to Zithromax. Over the next several weeks I had progressively increasing pain, in my left arm, from my shoulder to fingertips. Bilaterally my shoulders were painful to the touch, so much so that I had difficulty wearing a bra, or a seatbelt (I wore both when I had too anyway). I was also suffering from tinnitus intermittently, like a switch would flip in my ears. I was having trouble hearing certain tones and couldn’t use my cell phone without an ear piece to hear.

      I had a block of scheduled time off, so I laid low, resting as much as possible. I found that just about anything I did would exacerbate the symptoms. Just walking, lifting, washing my hair, folding laundry would make it intolerable. I had difficulty falling asleep, and would awaken in pain when I’d reposition.

     August 3, 2004, I had my second EMG of my left arm, which actually showed a slight improvement from 2 years earlier. I question those results as the symptoms are at times worse depending on my level of activity, and by now I know to use caution, even with the simplest movements of that arm.

     August 16, 2004 I had an MRI of my cervical spine ordered by the pain clinic physician. The plan initially was for a scalene block that would interrupt the nerve impulse and possibly correct its hyper activity. However the MRI showed a slight bulge to the left at C5-6, which houses the nerves for my left arm. So instead of the block I had 2 epidural injections of Depo-Medrol, 2 wks apart. This only exacerbated the pain down my arm and has left me with muscle spasms across my upper back. Valium, heat and laying flat help that.

     Shortly after the MRI my Mom passed away at 80 years old. Her cause of death was listed as “complications from a Lupus like condition”. It makes me wonder, she’d been symptomatic since shortly after my birth in 1961. Back then they called it Lupus, telling her she was terminal. Since then blood tests contradicted that diagnosis.

     Sept. 17, 2004 I saw a spine specialist (tops in his field, and a professor) who reviewed my MRI and saw no nerve involvement with the bulge and felt that my MRI was actually within normal limits…It was the first time I actually broke down in an MD’s office. You see, with the findings of a physical abnormality the Ortho nurse in me was thinking…hey, this can be an easy fix…maybe it wasn’t the Quinolones after all. The term disappointment just begins to describe my feelings. Throwing caution to the wind (I usually get a quizzical look from MD’s when I bring up Quinolones and adverse reactions). I began to blubber on about my journey of pain and search for relief after taking these antibiotics. The resident (His title was Fellow, not sure what that means) that was in the room with my MD had actually heard about it! He said that it’s been on an exam for the last 5 years. So at least the doctors coming up are getting some information! Though no one seems to know how to treat it. I seem to just get sent on to the next specialist.

     My next steps are to see a Chiropractor, and an MD specializing in acupuncture. I’m also considering an herbalist to treat the tendon pain homeopathically. I have been on medical leave since August 22, 2004. I miss my job, my coworkers and my patients. I miss the sense of pride I feel when I’m out there making a difference in people’s lives.

     We had planned on purchasing our first home around the first of the year. I need to get back to work in order to qualify for a mortgage. I have had to dip into our savings to cover some of my bills. My fellow employees have donated some of their paid time off hours, and have sent over food for my family. I cannot say enough for the appreciation I feel toward all of them. I am also extremely fortunate to have a very understanding family. I’m blessed with the most supportive husband you could ever imagine.

     Reading your stories here, I realize that my adverse reaction is relatively mild compared to others. In a way I should feel fortunate, with the knowledge that it could be far worse.

     I’ve run the gamut of emotions, revisiting many. I now feel the need to educate, and do so every chance I get. I give copies of the most recent articles to each of the MD’s I see. I hope that new, larger, more encompassing studies are being developed. 

     I recently saw in the news that Vioxx was being recalled. Vioxx, an anti-inflammatory.  It amazes me how quickly a decision was made, and that Merck voluntarily re-called it. I wonder what if the Quinolones adverse effects were made better known and recognized. What if true numbers were reported? What if Quinolones weren’t the magic bullet for bio-terrorist induced anthrax infection? It’s all so very frustrating, I feel my voice just isn’t loud enough.

Last Updated 10/10/04