*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.
Laura posted her story on Facebook. It can also be found on the Facebook Fluoroquinolone Wall of Pain.
After reading Joe King’s post I feel I must post my 7 year status a bit early. I think it will give some of you some hope about feeling better down the line, although it may take some time. But, the good news is that today, at age 63, I feel healthy, vibrant and am enjoying life, with few lingering symptoms. According to a chart that I saw years ago I would have been classified as having a moderate reaction.
This is long!
Laura Age 56 when floxed
September 1, 2006 completed 5 days of 500mg Levaquin
On day 5 of my Levaquin I began having intense shin pain. I called my doctor (not the doc who had prescribed it at Urgent Care) and she said to stop it immediately. The shin pain continued through September. Other than a strange rash, and headaches, the rest of the symptoms did not appear until January, four months later. In January and February I had a CT Scan (as my rheumatologist thought I had cancer), MRI (as my Neurologist wanted to rule out MS) and nerve tests in my legs. All negative except the peripheral nerve testing showed that I had damage. The following is a list of the symptoms I had. The only lasting symptoms are the muscle twitching in my legs (occasionally) and burning on the bottoms of my feet (occasionally). I am currently in a mild cycle after 6 months of NO symptoms, but I only have those two symptoms.
These are the symptoms I had beginning January 2007:
1. Muscle twitching in legs
2. Muscle cramping in toes and ball of right foot – and when this happens I also simultaneously have muscle pain/twitching in jaw/face area or sometimes hands/fingers as well as palpitations.
3. Pain in toes and feet (like arthritis)
4. Palpitations when I have certain muscle spasms (toe/face/chest)
5. Rash on arms in September/October – non-itchy, raised red, sporadic
6. ‘Bulls Eye’ rash 1-2 times; easily bruised
7. Tendonitis in Achilles, hip, shoulder, neck – tendon/muscle pain in various parts of body; never had a tear.
8. Shoulder pain (almost gone) since September 2006 – just below rotator cup
9. Hip sciatica (diagnosed by Rheumatologist) (pain in both hips when walking); I occasionally still get this but it doesn’t last long.
10. severe neck and spine pain for about 4 months; could not lift my arms up or turn my head to the side.
11. Inner anxiety – often coincided with heart palpitations; I could not
12. Headaches in Sep-Dec 2006
13. Restlessness: whole body feels like it is ‘electrified’ ; I could not relax at all. Would just walk around the house, get up and down. Ativan helped the most for me.
14. panic attacks (Neurologist called them ‘neurological attacks’
15. Vibrations – felt slight vibrations all over my body
16. Discomfort in lower jaw, face area
17. Discomfort/burning in esophageal/chest area
18. Undefinable sensations (dysthesias) throughout body, but mainly in legs, arms, head – feels like the tingling sensation when you are driving and you suddenly go down a hill or how your skin/body feels when you have a fever or flu. (this once came on suddenly from the waist down with lightheadedness – it was a very strange and scary sensation). Sometimes these feelings are overwhelming and I can’t sit or lie down. These feeling in my head were extremely frightening.
19. Lightheaded feeling, especially if I change position to sitting up or putting my legs up. Putting legs up increases muscle twitches, discomfort.
20. Esophageol discomfort – slight burning; feel like I can’t swallow
21. Feeling I can’t get enough air into my lungs; can’t take a full breath
22. Head pressure, like my ears need to pop.
23. Appetite ranges from nausea to starving – sometimes together – sometimes changing within an hour or nausea lasting several hours/all day.
24. weight loss of 17 pounds from January –May 2007. Have gained 12 pounds back and am now at a normal weight
25. Dizziness with nausea – waves, fluctuates.
26. Chills – very cold with cold hands and feet
27. varicose veins around ankles
28. itchy over many areas of body
29. At night – feeling like I am going to die when I wake up with sudden, strange muscle twitches or body sensations; electrical jolts and sudden sitting up with difficulty breathing.
30. Off balance and dizzy
31. Mood changes (much less now) – beginning Feb 2007 – 1 day I am VERY happy and the next sad (feel like crying).
32. Crying jags (3) for no apparent reason. Feel better after.
33. Lots of energy most days with intense anxiety and a need to be active. Could not relax for the first two years. Had to use Ativan to relax/sleep.
35. Intense brain fog and short-term memory loss; at one point I was forgetting everything within a couple minutes of it being told to me.
36. soreness in my knees, Achilles, shoulders, hips; popping of joints.
37. Shooting pains (feet, knees)
38. Patches of skin very sensitive to touch.
39. Burning soles of feet
40. Anxiety – overwhelming feelings
41. Tender areas on scalp
42. 3 months of daily intense heart arrythmias in May-July 2008 – 2 to 5 hours per day every day. Did an event monitor which showed the events, but just benign Premature Ventricular Contractions, Atrial Tachycardia and Ventricular Tarchycardia. Only had Premature Ventricular Contractions prior to Levaquin. I was referred to an electrical cardiologist who wanted to do ablation surgery but the problem was too close to the heart’s pace maker. So, I didn’t do the surgery, thank goodness as all the palpitations just stopped; they have reoccurred periodically but never at the same intensity. I rarely feel them anymore; most likely back to pre-Levaquin.
Mg = 600 mg
Ca = 1200 mg
Multiple vitamin/mineral supplement
Fish oil or omega 3 (alternate days) (switched to flax seed oil due to the possibility of antibiotics in the oil)
L-Carnitine with Alpha Lipoic Acid
Ativan as needed at night to sleep – .5mg December – 1 mg beginning Jan 2007 through November 2007. Occasional use only after November 2007. Ativan has helped the most of anything. I can feel my symptoms (all of them) ‘wash’ out of my body after I take the Ativan.
Acupuncture – ??? I think it helped, but I would always feel worse for a day or two, then a bit better. My neurologist thought it would be helpful.
Massage – helped, but only gentle massage
YOGA – helped a lot! Began March 2007
What has helped the most?
2. good diet – mainly vegetarian now except when I trust sources of beef – no more chicken or turkey for me. I eat tuna, organic eggs, yogurt, milk, cheese with no problem.
I know that food with antibiotics will cause symptoms (used to think it might just be in my head). I was on a cruise a couple years ago and I was told that all the fish was wild caught. I ate a fish dinner and that night I had the muscle twitches in my legs and the burning feet and anxiety. I thought it was just the trip. The next day the Food Service Manager came to find me to let me know that all of the fish was farmed.
I am currently on a no sugar, gluten free, alcohol free, dairy free diet as a cleanse; I do this every once in awhile.
3. yoga (when I was ready)
4. exercise – walking and elyptical at the gym
At two years out I felt I was at about 75% recovered. I could do most everything I did before I was floxed. Cycles usually lasted 1-3 weeks with unknown cause. At four years out I felt I was 90% recovered and now at 7 years out I feel that I am 95% recovered. In fact, I had about 6 months with no symptoms whatsoever, except lingering shoulder tendonitis. But then, about a month ago I started a cycle of burning feet and tingling in my legs; it’s not that bad so I just ignore it. About 1 month ago had success doing light upper body weight again. I had tried several times during the past few years but always ended up with tendonitis.
I am hopeful that each of you will find some sort of recovery, and that many of you will find substantial recovery. It does take time. Don’t give up hope!
** 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.