Summary

  • Name: Kathy

  • Email: kat52pug@yahoo.com

  • State or Country of residence: Texas

  • Sex: Female

  • Age: 52

  • Quinolone taken: Cipro for years, then Levaquin

  • Reason for the Quinolone: possible pneumonia (Levaquin)

  • Was a safer antibiotic tried first? : No

  • How long ago did you take the Quinolone?: Tablets 5 months ago, IV 4 months ago

  • How much have you recovered as of now?: 70%

  • How often do you relapse or cycle?: 3-4 times week, but less severe now

  • Does your doctor agree the Quinolone is the cause of your problems?: Yes

  • Do you have a history of seizures or neurological problems?: No

  • Please list anything your doctor did that helped in your recovery:  Told me during second hospitalization that my only problem was that I was THE most depressed person he had ever met, which pissed me off so much that I became determined to live just to fight back & warn others about this drug & the ignorance of our medical personnel!
     

  • What has helped you in your recovery?: Anger, determination, stopping all prescription meds, even those have been taking for years. Vitamins, coral calcium, magnesium, potassium, B-6, B-12, MSM, extra C, garlic, Omega-3, prednisone 20 mg day, amitryptaline 25 mg bedtime, lots of fruit & veggie juices, asking angels for help!


     

 

 

Kathy's Story

Initial symptoms from first Levaquin tablets: fatigue, weight loss, dehydration, irregular heartbeat, dizziness, flu-like symptoms, worsening of allergies & asthma, blurred/double vision, insomnia, severe headaches, progressing over next 3-4 weeks to DEEP depression, panic attacks, thoughts of suicide, trembling in hands, tingling & numbness in lower legs & feet, cold sweats. Ended up in local ER. Elevated BP. Body temp 96.0. Severely dehydrated. Chest X-Ray clear. EKG normal. Severe pain in left shoulder (could barely lift arm), also both ankles. WBC normal. Blood in urine. Was given IV fluids for dehydration, pain shot, & IV antibiotic (found out 2 months later was Levaquin!), released with prescription for Cipro & Vicadin for "possible kidney infection". Realize now that all were classic symptoms of Levaquin ADR's, had no idea at that time, & neither did medical personnel in ER, obviously!

Within hours, everything went to hell. All symptoms became worse, to put it mildly. Add to the mix: Flashing whirling lights exploding in front of my eyes, paranoia, profound sadness, loss of balance, staggering walk, dry mouth, nausea, trouble concentrating, backache, abdominal pain, feelings of fear, pain & tingling in feet & hands, overpowering exhaustion, bruises on legs popping up out of nowhere, sobbing spells, weird dreams during fitful sleep. And then, 48 hours later, the feeling of "whooshing" in & out of my head rapid-fire, like instantaneously being thrown into & out of deep sleep, over & over again, lasting for 20-30 minutes at a time (once when I was driving !). Back to doctor, crying, scared, needed help badly. Since I had pre-existing auto-immune connective tissue disease (scleroderma), he thought that maybe it was a progression of that condition, or possibly a brain or pituitary tumor. Sent me to ER at diagnostic hospital where my Rheumatologist practiced for admission & testing.

Hospitalized 6 days. MRI normal. CAT scan showed kidney stones. EKG normal. BP 150/90, then 90/45, fluctuating up & down. Again severely dehydrated. Drastic weight loss (15 lbs one month). Electrolytes off. EEG abnormal (?). Muscle weakness, atrophy. Consults with Neurologist, Internist, Physical Therapist. Released with prescriptions For Zoloft (depression), Reglan (nausea) & Midrin (headaches), with instructions to eat more, drink more fluids, exercise to re-gain strength & relieve stress. Return in 30 days to repeat EEG. Follow-up EEG was also abnormal, in exactly the same way in the exact same area of brain as before. Diagnosed with idiopathic seizure disorder, & put on Keppra, 1000 md twice a day.

Next 2 months, almost lost job from missing work & being late when I did show up. "Seizures" stopped, still had headaches, joint pains, fatigue, tingling & numb extremities, dizziness, "clumsiness", zoned-out feelings, sense of isolation, constant cough & asthma, itchy feeling skin, memory problems, humming in ears, trouble writing & spelling, forgetting my train of thought in the middle of sentences, incontinance. Body temp dropping to 95.1 at times, foggy out-of touch feeling.

That's when I started searching on internet for a cause; this could not have "just happened" out of the blue! All the drugs I was being given were for symptoms of SOMETHING, & I knew I was not crazy...SOMETHING triggered this. There was no family history of epilepsy, & I felt like I was being poisoned by all these prescription anti-seizure, anti-depressant, anti-nausea, anti-migraine drugs. My body was failing, & I was not strong enough physically to handle them. I was getting weaker by the day, not better. That's how I found this site, by accident, keying in my symptoms, over & over, in different orders. I cried in relief, then in horror, then in sympathy. Then I cried in anger.

A week after my Levaquin education, I had to call 911. I woke up in the middle of the night, coughing so violently that I could not breathe. Felt like my lungs were collapsing & sticking together. Passing out when I tried to stand up. Inhaler didn't help, couldn't inhale. Fever 102, chills, cold sweats, teeth chattering. ER was going to give me Levaquin again. Went crazy on them, but won that argument. Admitted with "possible bronchitis" causing respiratory distress. Diagnosed with severe depression (AGAIN). Doc told my sister to get me off computer, was bad for my mental health, causing me to become obsessed with my own illness. All I needed was stronger anti-depressant & to take better care of myself. Possibly anorexia, causing weight loss (20 lb by this time) & dehydration. Making myself sick. What was wrong with me had nothing to do with a reaction to any known antibiotic!

I'm better now, at least mentally. Still have rolling intermittent side effects, my appetite is back, I'm starting to gain a little weight. Joint pains, tingling & numbness travel throughout my body unannounced & unwelcome. Spider veins all over legs & torso, strange under-skin pale cherry-colored mini leopard print rash on palms of hands & forearms, blotchy bronzish discolorization on lower calves, trouble grasping with hands & fingers, dropping items all the time. Know I will never be the same, & plan on getting tests done to rule out any permanent damage. Hands still tremble. Worry about "serum-sickness" aspect, & wonder how it might have affected my pre-existing autoimmune disorder.

Am determined to fight this, physically, legally, any way I can. If anyone else has any ideas or wants to e-mail me, feel free. I lost almost 5 months of my life, thousands in medical bills, loss of wages, loss of dignity, and much, much more. This didn't have to happen to any of us, we weren't given the chance to give an informed consent, & I feel like a lab rat, expendable for drug company profits.

Last Updated 3/25/05