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Topic: My Levaquin Experience... (Read 2,336 times)

shanesouthwood
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My Levaquin Experience...
« Thread Started on Nov 13, 2006, 5:23pm »

This is my 6-month progress report from another Fluoroquinolone site. It was written Sept. 22, 2006.

Tomorrow will be a day that I am glad to see finally arrive. For those of you that don't know by now or are reading posts for the first time:

For those of you who don't know me at all, I turned 30 in January 2006 and I felt like I was 18. I considered myself to be beginning my career as a software engineer (something I have done since childhood as a hobby) and leaving the field of IT as a veteran. I am/was to be married October 7th of this year to my fiance, whom I have known since high-school. I did have sinus issues from a badly-deviated septum due to a rough youth and past girlfriends that are good at breaking noses unintentionally (once broken, you need only breathe on it to re-fracture even years later).

I also have mild sciatica that only acts up when the weather changes or when I actually 'believe' that I am 18 and do something stupid in my right leg. I compressed two disks lifting a heavy object several years ago and it is more of a nag than a life-changing thing for me now that I work at a desk. It did not interfere with my level of physical activity.

Starting March 21st 2006 I took 750mg Levaquin for 3 days (out of 5). On the first morning, I had symptoms of tendinitis, insomnia, and developing anxiety. By the third dose (2:00PM on the Friday, the 23rd) I had full-blown acute symptoms including:
1. ) Tinnitus in both ears, louder in the right.
2. ) Tendinitis (now diagnosed as FQ-induced by rheumy)
3. ) Muscle tension in calves
4. ) Plantar fascitis
5. ) Symptoms of carpal and tarsal tunnel syndrome (very, very bad)
6. ) Unilateral headaches
7. ) Eye pain (never really bad)
8. ) Numbness and tingling in the extremities
9. ) Partial erectile dysfunction (numbness and tingling)
10.) Feeling of urgency of urination on partially-full bladder
11.) Diarrhea since the first pill
12.) Full-on brain fog and confusion
13.) Long-lasting bouts of depersonalization (hours)
14.) Feelings of extreme pressure in the head and back of neck
15.) Pain in the general area of my liver
16.) Fever (low-grade 99-100)
17.) Inability to perform plantar flexion (stand on toes)
18.) Complete insomnia (no sleep, for weeks)
19.) Non-abating anxiety, it was like I was always "ON"
20.) Vivid, psychotic dreams and spastic jerking of head, extremities, and even trunk of body during decreasing amounts of sleep until insomnia was completely in charge.
21.) Racing heart rates for no reason whatsoever.
22.) The beginnings of what would weeks later become horrible, but temporary, palpitations.
23.) A feeling of not being mentally right; I cannot explain it except to say that I thought I was going to fall apart.
24.) Visual distortions (crawling walls, seeing stars, etc)
25.) Sensitivity of eyes to light (couldn't drive during day or night because of sun and bright headlights)
26.) Decreased transit time of foods in stomach; probably causing diarrhea. If you are having this, don't eat salad!
27.) Rapid weight loss (30 lbs in 7 days, documented by GP)
28.) Weakness and feeling of detachment of nearly all extremities
29.) Feeling of detachment mentally, like you are a passenger in your own brain.
30.) Inability to focus on anything, even your current state.
31.) Clumsiness, lack of coordination, dropping things.
32.) Constantly cold hands and feet.
33.) Immediate feeling of muscle cramping along with soreness and stiffness.
34.) Actual cramps in fingers, hands, jaw, tongue, toes, etc.
35.) Sciatica-like myalgias in all extremities
36.) Inflammation-like lumbar back pain
37.) Dizziness and light-headedness

After several weeks, I began to develop the following
37.) Pins and needles and numbness turned into strong feelings of vibrating in hands and feet.
38.) Anxiety and insomnia levels that hight doses of benzodiazepines couldn't control.
39.) Fatigue and decreased energy levels
40.) Extremely dry eyes
41.) Extremely dry sinus (started from first pill)
42.) Extremely dry ears
43.) Dry, noisy (grinding) leg/neck/wrist joints that I can hear in my ears
44.) Floaters, they are huge and eventually became nearly opaque
45.) Shaky eyes
46.) Feelings of electric shock nearly anywhere
47.) Fasciculations and crawling skin nearly anywhere
48.) Horrendous night sweats even though hands/feet freezing.
49.) Explosion of huge varicose veins and rashes on ankles and feet.
50.) Shakiness, muscle tremors, intention tremors
51.) Lasting muscle spasms
52.) Difficulty having blood draws due to constricted, collapsed, and slow/low volume blood vessels that stop bleeding (starting in second week). I tried for 3 weeks to get a lipid panel drawn 2x per day, twice per week, 5-8 various sticks per visit. Eventually, a month later the blood was successfully drawn and things started to improve slowly.

These symptoms are not in order of rank or appearance, more here to give somebody an idea of what they can expect with the initial symptoms. Nothing, by itself, was so bad that I wanted to die (with the exception of mental issues and the tinnitus), but everything together was more than any individual is designed to be able to endure.

This was my SECOND reaction to a fluoroquinolone; I took Tequin in early June 2000 and had a month of increasing then decreasing insomnia and a delayed photosensitive reaction that turned into something resembling Stephen's Johnson's Syndrome approximately (guessing at this point) 5-6 weeks post-discontinuation. I was tan by then and back out in the sun and laying by the pool; the reaction happened after 5-30 minutes exposure to the sun while on vacation at HHI, SC in mid-July 2000. It happened after I covered myself in sunscreen and the reaction caused blistering and peeling in my mouth and other places that have never seen the sun. Other than a small melanoma, I had no lasting effects and returned to my normal life.

Now, 6 months out from my second (and last) FQ reaction, I am at close to 65-70% mentally on average and about 70-80% physically despite continuing tendon, joint, and bursitis issues. This is all due to cycling. My biggest mental improvement came after starting smoking again out of desperation from the anxiety. None of my physicians seemed to think that I needed more than benzos for anxiety although I pleaded for Paxil, Prozac, or anything else. Since starting smoking, I sleep about 75% of the time that I used to but still have vivid and sometimes violently-psychotic dreams.

I have dozens of blood tests that reflect inflammation and tendinitis immediately as well as liver enzymes that are 4x higher than they should be. I would suspect defective liver enzymes for the reaction, based on the swelling and pain and the fact that I have had generalized upper right quadrant pain for years (indicating fatty-liver disease). I was diagnosed with a fatty liver after the lipid panel and an ultrasound and referred to a gasto-ent but I never went because I was afraid of the bursitis/arthritis from cholesterol-lowering drugs at that point.

Now, I still wouldn't consider it, but only because the arthritis and dryness and neuropathies all seem to be linked and go through basically the same progression when I cycle. The symptoms can be just as acute (or worse) than my initial experience, but within days I go back to normal.

I have learned that drinking bottled de-ionized water doesn't help but tastes better, NSAIDS (Naproxen) are your best friends after 3-4 months of pain, Soy (literally all soy products) and grapefruit juice trigger mini-cycles and hinder recovery, and organic food seems to have no effect either way (could be a regional thing, though). The combination of Vitamin C and Selenium does something to help. Melatonin works, absolutely. Benzodiazepines (Restoril for me) can help over the short-term with complete insomnia. B-Complexes seem to lower the severity of tinnitus.

Things that help the pain are stretching exercises, light exercise, massage, etc. Most of this stuff works on the mental and anxiety aspects too. Nothing helps the psychotic dreams.

I have done a lot of experimenting with vitamins, etc. Valerian root is effective and didn't kill me with benzos. Dryness seems to be the source of many of the conditions that I have; possibly even tinnitus. I am going back to a Rheumy that I saw in March, a week after the second pill, to see if we can look at treatments for general dryness disorders as a potential approach to relieving some of the pain and discomfort.

I was not an avid athlete before this, but I did run often for exercise (less than 15 miles a week and probably more like 10). I did spend a lot of time on a bicycle, working in the yard, etc. I literally lived to be outside, even in the freezing cold. I've never had any problems with dryness at all in my life, a bottle of lotion would last me years before.

« Last Edit: Nov 13, 2006, 5:33pm by shanesouthwood »

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