This personal story was originally posted to the Quinolone Adverse Reaction Forum. If you are a victim of a quinolone antibiotic and need support or advice then please visit the Quinolone Adverse Reaction Forum (http://groups.yahoo.com/group/quinolones/).
 

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Levaquin
Posted on 7 December 2002
All:

This is my story and it may or may not benefit anyone. But, I believe some of my experiences might possibly help others that are newer to the forum. I hope I don't offend any of the long timers that have seen little or no recovery. But, I will try to spread a relatively positive story (I still have a way to go) that is not tied to any supplements or miracle cures. Also, I am not trying to sound brave by telling my story as honestly as possible. I was scared to death about the ADR's and still find myself worried about the long term implications of the ADR's. Here it goes, I hope it's not too boring.

In july 2001, I was floxed after taking 28 days of levaquin for suspected prostatitis. I am a 40 year old male that was a very active father of two young kids and I was a very athletic, runner, golfer, skier, tennis player, softball, etc. I was always on the go and had as much energy as when I was 25.

During the course of my treatment, I developed dizziness, tendon pain in achilles and shoulders, adn some fatigue but was not smart enough to stop taking the drug until the 28th day. After stopping the drug, the real fun began as the symptoms got progressively worse for about one month. Vision problems, tinnitus, full body muscle twitching, tingling and numbness in extremities, drenching night sweats, unbearable fatigue, depression, horrible pain on the bottoms of the feet, insomnia, and weakness comprised the majority of my symptoms. After about a month or a month and a half, I thought things were beginning to improve. Then the the muscular skeletal problems began to spread. First, both elbows and forearms began to hurt and burn. Next the gluts and hamstrings began to burn when sitting down. Then came the hips, knees and ankles. All of this happened during the first 4 to 5 months. I was falling asleep at work, going to bed at 8:30 with the kids, crying for no reason whatsoever, living with constant pain in virtually every part of my body, limping everywhere, sitting at parties rather than standing, etc. You all know the story so I won't belabor the extent of my problems. I was in pretty bad shape, but not as bad as some others on the forum (I don't appear to have any organ damage or ruptured tendons).

I went to all kinds of docs (even the Mayo clinic) and had a whole host of tests done. Never found any major problems--to them I was a picture of health. My urinary cortisol was elevated but no Cushings. Other hormones looked a bit screwy for a 40 year old male, but they were always within the normal ranges. Docs thought I was crazy just like most of your docs. My doc early on prescribed steroids and vioxx--I turned him down. Other docs prescribed various antidepressants--I turned them down. Never even took advil, Quite frankly, I was scared to put anything else in my body. I finally found a couple of good docs that understand these reactions and had seen them before. Unfortunately, they all said there is no cure and that time should heal me--but, that it could take a long time.

From day one, I refused to give up. I went to Disney with my family the week after stopping the drug. It was murder on my feet and legs, and I was very fatigued and scared as the symptoms continued to multiply (and due to the unknown nature of the problems I was facing). But, I was not going to let Ortho or levaquin beat me down to a pulp. I also resolved that I would continue to exercise to tolerance. Running, golf, tennis, and all other high impact/high stress sports have been out of the question since day one. However, I hit the recumbent bike from the very beginning. Even when the fatigue was overwhelming, I would force myself to do some form of exercise. Most weeks, I try to ride the bike 3 to 5 times for 25 to 30 minutes. I also walk occasionally, ride a my bike outdoors when I am having a relatively good period, roller blade with the kids occasionally, toss the baseball gently with my young kids, do short hikes in the woods, etc. Anything to make me feel like I'm getting some exercise. I tried weights in the beginning but it was too much for me (I couldn't even carry a three pound briefcase to the car from my office due to the pain in my arms). However, over the last 4 or 5 months, I am in the gym again and getting progressively stronger. I tried bowling with the kids at the 10 month mark--NO WAY. But, at the 14 month mark, I was able to handle one game (using a very light ball) with only a little pain. When any of these activities caused excessive pain, I laid off for a while. This happened all too often in the beginning. But, I continued to press my body with these low impact activities to see how far it could go. The exercise has helped me tremendously from a mental perspective. I know other say to refrain from exercise, but it seems to be doing good things for me.

I always ate a relatively healthy diet, but since being floxed, I have gotten even better. No more junk food, fries, sweets, etc. Cut out coffee. Eating primarily organic veggies, fruits, dairy products and meats at home (I will eat non organic beef and pork occasionally when we dine out). I do take one magnesium pill per day, one RDA level vitamin B tablet, 400 mg of E and 500 mg of C. I have also been going for acupuncture every 3 weeks since May 2002. But, I can't say any of these have really helped.

So--how have my symptoms progressed? I got progressively worse for the first six months or so. Then had many ups and downs, but for the most part, stabilized feeling basically horrible every day for the next four months or so. During months 11 and 12, I really felt like I was beginning to make real progress. Strength improved, fatigue lessened, brain fog improved, aches and pains greatly diminished, etc. Then, got hit pretty hard with a relapse in month 13 and part of 14. Set me back a ways but was not nearly as bad as during the first 6 months. For the past month and a half, I have been on the upswing again. In terms of where I am versus my prequinolone state, I would say that I am about 75% of my former self. Many of the PNS/CNS problems are gone or much improved. The muscular skeletal problems are my most limiting problem today. I am much improved in terms of the constant pain, but my body is not yet ready for vigorous sports. A comprehensive summary and current status of my symptoms is as follows:

Symptom Current Status

Achilles-stabbing pain Much improved
Shoulders-stabbing pain Somewhat better
Feet-sharp pains debilitating pain comes and goes
Aches in ankles and knees Minor pain comes and goes
Hips--burning and achy pain Right hip fine, left improving
Burning pain in gluts/hams Gone
Burning pain in forearms Gone
Elbows-burning/achy Much improved
Hands-pain in joints Only minor aches occasionally
Twitching in muscles Gone except for in calves
Major fatigue Mostly gone--minor occurrences
Depression Gone
Depersonalization Gone
Numbness/tingling Gone
Vision problems Rt pupil acts up occasionally
tinnitus Minor buzzing from time to time
Drenching night sweats Gone
Dry eyes Rt eye dry occasionally
dry/blotchy skin still dry/blotchy, esp in winter
insomnia Much improved
Anxiety Gone
Sun sensitivity Gone
Brain fog Improving
greatly decreased libido Improving
So, for those of you that are new to the forum. There is hope of some or total recovery. But, it does take a long time and I don't believe there is a magic bullet (ie:supplement, alternative therapy, etc.). I still have a way to go to get back to my pre FQ state, but I am much improved. In addition, I have talked to others that have seen similar improvement, or even better, over time. It seems that 18 to 24 months is a good time horizon to look at for decent recovery.

Again, I don't want to offend any of you that have seen no improvement or only minor improvement over time. I simply want those that are currently feeling overwhelmed or out of hope to know that there is hope. You are not alone, you are not crazy, you can recover, and you can fight this. DON'T GIVE UP. Take care of your body, take care of your families, keep a positive attitude, don't let any doc convince you are crazy, don't take any more meds unless absolutely necessary, try to exercise even if it's only walking for 5 minutes a day (but watch closely for tendon rupture). Pray and have faith.

Good luck all. I hope someone finds this helpful. CBS

Originally posted on the Quinolone Adverse Reaction Forum at http://groups.yahoo.com/group/quinolones/message/11213