These are the abstracts from the post marketing reports posted on www.fqvictims.org

Recent Additions for March 2005

Recent Additions for February 2005

Summary
Name: Susan L.
State or Country of residence: SC, USA
Sex: Female
Age: 55
Quinolone taken: Levaquin
Reason for the Quinolone: Severe Sinus Infection
Was a safer antibiotic tried first? : No
How long did you take the Quinolone for? : 6 pills
How long ago did you take the Quinolone?: December 29, 2004
How much have you recovered as of now?: 90%
How often do you relapse or cycle?: Once or twice a week
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: Advised me to take 2 Aleve once a day. I did not take it, however
What has helped you in your recovery?: Rest and patience

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Susan L.'s Story

I took Levaquin for a sinus infection at the end of December 2004. After the 4th pill I noticed severe muscle and joint pain that I had never experienced before. I took 2 more pills then called the doctor because I could not lift my legs or walk or move without pain. I couldn't pick up a coffee cup! My doctor was out of town but an associate told me to stop the Levaquin and to start Amoxicillin. The pain and stiffness did not ease up so I called my doctor a week later and was told to take 2 Aleve per day and to see him if not better in a week.

I refused to take the Aleve because of questions on its side effects, so I stayed in bed for over a week. Even after the rest period I would cry if I had to go buy groceries because of the pain in my muscles and joints. It has been more than a month since stopping the Levaquin and I am 90% better but still have aches and pains I never had before.


Name: Scott
Email: scott_thorpe2002@yahoo.com
State or Country of residence: Colorado
Sex: Male
Age: 30
Quinolone taken: Avelox
Reason for the Quinolone: Diagnosed with Colitis
Was a safer antibiotic tried first? : No
How long did you take the Quinolone for? : 1 Pill for Two Days
How long ago did you take the Quinolone?: Two weeks
How much have you recovered as of now?: Less than 10%
Does your doctor agree the Quinolone is the cause of your problems?: No
Do you have a history of seizures or neurological problems?: No
Please list anything your doctor did that helped in your recovery: Splint, prednisone, blood work, MRI
What has helped you in your recovery?: Icing ankle

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Scott's Story

I had developed Colitis from taking Augmentin over a weeks period. When I returned to my doctor to ask about it, he prescribed Avelox for 5 days.
After the first pill, I felt a bit dizzy and woke up the next morning feeling as though I had rolled my ankle. I was able to work through the pain and go through my usual routine. The second night, I took the medicine again. When I woke the next morning I couldn't walk on my ankle and it has been that way for two weeks since.

I've been to an orthopedic specialist who did blood work with several counts that were high - including white cell counts. My orthopedic told me to get it out of my mind that it's a drug reaction, but I'm not ready to do that. I went from perfectly healthy to confined to my bed in two days with no better explanation.


Name: Greg
Email: greg_hagerman@hotmail.com
State or Country of residence: Texas
Sex: Male
Age: 32
Quinolone taken: Cipro, March '98; Levaquin, Feb '03
Reason for the Quinolone: Cipro for diarrhea, Levaquin for sinus infection
Was a safer antibiotic tried first? : No
How long did you take the Quinolone for? : Cipro - 10 days, Levaquin - 4 days
How long ago did you take the Quinolone?: Cipro - March '98, Levaquin - Feb '03
How much have you recovered as of now?: 20%
Does your doctor agree the Quinolone is the cause of your problems?: No
Do you have a history of seizures or neurological problems?: Yes
Please list anything your doctor did that helped in your recovery: I've seen many doctors; it varies from person to person whether they even believe the 'floxings' are true. Even those who tend to believe it, they admit they wouldn't know how to treat it
What has helped you in your recovery?: Just trying to keep stress levels to a minimum, but half of my Quinolone problems are heightened anxiety, depression and insomnia, so it's a catch-22

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Greg's Story

Jan-98, I came down with a bout of diarrhea seemingly triggered by eating at a local pizza place. 2-3 weeks later I went to my GP who prescribed Cipro (250mg 2xday) for ten days. 12 hours into taking it I was very nervous (already had a nervous disposition). A few days later I realized the Cipro was aggravating me this way. A call to the doctor just ended up having the nurse recommend I stay with the course of meds until they are finished. Upon finishing the med, most of the nervousness went away but the diarrhea continued (later would find out some food allergies needed addressing). However my immune system showed signs of weakness in the following weeks. 13 weeks after the Cipro was finished i woke up with what felt like a stroke. I woke up literally feeling sort of drunk, all my skin had lost some of its sensation and my mind was slow, so concentration and memory problems were bad. It lightened up somewhat over the next few months and nothing was done to address it as one GP chalked it up to viral or maybe mononucleosis.

A year went by and I only recovered maybe 40% from the neuro difficulties, which in sum leave me feeling like I have alcohol in my system. Since I see stars almost constantly, and in conjunction with a theory from a doctor from Emory Univ and a MRI/MRA readings, I most likely have some inflammation in the brain and/or blood vessels to the brain, causing me to seem kinda out of it 24/7.

Clinical evidence to date has chronic eosonophils high in the CBC. ANA level of 1280:1 or 640:1, depending on the lab. For years my symptoms got neither worse nor better but coping became difficult around 2001 and I was put on Paxil. The physicians tried to push the issue that everything was stress caused but none of their meds worked and even some beneficial therapy didn't undo all these symptoms so they quit pushing the stress theory as much.

Feb '03 I had a month long cold and another GP prescribed Levaquin as a preventative measure for a sinus infection. Within hours I noticed an increase in anxiety but for some reason I didn't put the two together until the 4th day (was taking them just once a day). By the 4th day I was near hysterical. Previously a half dose of Paxil kept me stable as far as anxiety/mental state. Now it didn't work in the least and benzodiazapines were enlisted just so I could sleep and not spiral down into a panic attack/breakdown. Also, the Levaquin re-inflamed a joint in my toe. Before the Levaquin I stubbed a toe pretty bad and it was red for a week or so but got back to normal. Levaquin re-inflamed this joint for weeks. My visit to the Rheumatologist proved informative in that many of his patients who have Lupus or a form of arthritis get aggravations from Quinolones.

All in all, for 6 1/2 years I've had this 'brain fog', which may be too vague a term. It's not some benign form of depression driven malaise. It's like Oxygen deprivation, as I see stars and feel partially intoxicated all the time. My mind doesn't work as efficiently so memory and concentration are not optimal. My surroundings seem distant, a copy of a copy so enjoyment from the everyday things or even the not-so everyday things is difficult since coherency is affected. So far I haven't found anything to help it. Exercising doesn't seem to help or invigorate me, although I did work my way up to jogging a 9:30 mile/5k last year. My strength, and stamina levels are affected as well. Diarrhea continues each day to a certain extent but I've had to cut out wheat an a host of other foods just to partially control it. The past two years, since the Levaquin experience (2nd of 2 floxings), I've had to depend on Klonopin or something similar to sleep. Evidently my sensitivity to meds increased after Levaquin and most of the normal SSRI's and such are too much for my body and usually just aggravate my anxiety and insomnia.

Name: Bulldoglover
Email: buddy3707@peoplepc.com
State or Country of residence: TN
Sex: Male
Age: 34
Quinolone taken: Cipro and Levaquin
Reason for the Quinolone: Urological reasons
Was a safer antibiotic tried first? : Yes
How long did you take the Quinolone for? : Off and on up to 6 months
How long ago did you take the Quinolone?: 7 Years
How much have you recovered as of now?: 100%
Does your doctor agree the Quinolone is the cause of your problems?: No
Do you have a history of seizures or neurological problems?: No
Please list anything your doctor did that helped in your recovery: Nothing
What has helped you in your recovery?: Nothing

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Bulldoglover's Story

Yeah, I will tell you what Levaquin did to me. It nearly drove me crazy. I was taking it for urological reasons.
After taking 2-3 rounds of it, back in 1998, 1999, I found myself having hallucinations, vivid dreams, voices telling me that I wanted to kill someone, voices telling me to "just do it" "you will feel better" "you know you want to do it" "be afraid of knives"

The next thing I knew, I was sitting in front of a psychiatrist telling all of my inner thoughts and crying for help..... I have always been a strong person and never a weak minded individual.. but I will tell you one thing. Levaquin will destroy your LIFE!

I also did a lot of running away. I took trips to get away from the ones I loved, so that I KNEW I wouldn't hurt them. I spent dollar after dollar trying to get away and get better. I spent many restless nights of listening to voices.... the devil, hell whoever it was..... telling me over and over do it, do it, do it, do it, do it........ yeah, you will feel better......

After I finally wizened up and stopped taking the drug, it was kind of funny all of the obsessive compulsive thoughts and hallucinations, and dreams just suddenly stopped..... out of the blue.....

The damned psychiatrist was trying to get me to take Prozac, I can only imagine how I would be if I had went that route.

Now, on to Cipro... This drug has no value whatsoever......... take it and see what happens.......... God be with you if you are a male.... Cipro, Levaquin cause many problems. My little fact that all doctors STILL DENY, is that Cipro, causes PROSTATE SWELLING, SEVERE PROSTATE SWELLING. Take a Cipro pill, wait 45 minutes and start to notice the prostate swell....... Kind of funny the swelling goes away after about 4 hours and then as soon as you take another Cipro pill, 45 minutes later, the swelling comes back...... When you Stop taking Cipro, the prostate will not swell....

Cipro will also wreak havoc on your bowels. I could not have a bowel movement for 5 days... Man, the pressure was unbearable. After stopping the drug, I finally was able to go and I sat on the toilet for 3.5 hours having bowel movement after bowel movement.... over 3 hours...... Also, Cipro will cause you to be allergic to things you might not normally be allergic to. Anyway, another nice drug MINOCYCLINE, will also cause problems...... I took it and guess what????? The left side of my face began to draw mimicking a stroke and also this may offend some of you people, but how would you like to be laying in bed one night and have an orgasm from no sex play. it just happened.. out of the blue, ejaculation and all.... Doctors said it was due to the high Zinc content of minocycline......??? go figure...

Anyway, the stroke symptoms were enough to tell me to never take this drug again..... Anyway, I have fully recovered after stopping the drugs. This was all about 7 years ago..... The only thing I have to say, PHARMACEUTICAL COMPANIES, get your shit straight........I don't like being a guinea pig....

Name: Harry
Sex: Male
Age: 42
Quinolone taken: Cipro and Floxin
Reason for the Quinolone: Suspected but never confirmed prostatitis
Was a safer antibiotic tried first? : No
How long did you take the Quinolone for? : Weeks
How long ago did you take the Quinolone?: 7 Years ago
How much have you recovered as of now?: 35%
Does your doctor agree the Quinolone is the cause of your problems?: No
Do you have a history of seizures or neurological problems?: No

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Harry's Story

Seven years ago On Dec 13, 1997, when I was 35 years old and in excellent health, I went to the doctor for minor urinary tract discomfort that started to occur after making love with my wife, so I made an appointment with a doctor. I went to the doctor expecting him to perform testing to see if I had an infection, but instead he said “we don’t test in these circumstances anymore, we just prescribe a broad-spectrum antibiotic that kills a wide variety of pathogens.” After 10 minutes in his office, I was whisked out the door and on my way to the pharmacy. After starting the antibiotic he prescribed called Cipro I began feeling anxious and edgy. After a few days on the drug I began to experiencing hallucinations and a higher rate of anxiety where I was euphoric one minute and then crying the next. I called my doctor and he assured me it was the infection causing my symptoms and to keep taking the antibiotic. Then I started experiencing muscle pain in my legs, lower back and pelvis region along with a massive headache. Plus I still had the anxiety which started turning into panic attacks that left me feeling like I was having a stroke. I called both my doc and my pharmacist and they all told me to keep taking the antibiotic because the drug would not cause my symptoms. So I listened to them and kept taking the drug. I then remembered the 1/3 page computer printout I received at the pharmacy when I had the Cipro prescription filled that listed two minor side effects that could occur. They were upset stomach and diarrhea. It also said not to take antacids or zinc and magnesium containing foods within 2 hours before or after taking the antibiotic. That is all it said. Nothing about any other side effects or reactions were written anywhere on the page. Scared and not knowing what to do, I stopped the antibiotic and then went back to the doctor. The doc pointed out how I shouldn’t have stopped the antibiotic half-way thru the course. He said he would prescribe a different antibiotic after I questioned if the drugs could be causing my symptoms. He prescribed another antibiotic called Floxin. After taking it I was still experiencing the panic attacks and severe unbearable chronic pain in my muscles and joints. Because I was on a so-called “different” antibiotic, I figured it wasn’t the antibiotics causing my symptoms because the doc had put me on a different antibiotic and the symptoms where still present so it must be from an infection. I did not know at the time that Floxin was in the same class as Cipro, only it was a stronger version. By now I was in constant severe chronic pain and still having anxiety reactions and panic attacks. I had blood in my urine, my sugar was out of whack and my blood pressure was very low. On numerous occasions I passed out from low blood sugar where after going to the ER was given orange juice and sent home. Continually, I kept either passing out or felt like I was going to pass out. I didn’t know if it was from the panic attacks or the hypoglycemia. It took almost 2 years of going back and forth to emergency rooms and doctor offices before finally figuring out it was my heart that was damaged and I that I needed to have a pacemaker installed. I was rushed in and out of the emergency room too many times to count.

I have been admitted into ICU, CCU and 2 mental institutions because of the diagnosis of it being “all in my head”. Then because I was taking narcotic pain relievers for severe chronic pain I was diagnosed as a “drug addict” and someone just trying to get narcotics. As a result, I was sent to a detox center twice, each time for a month, despite the fact that I never had a positive tox screen for any illegal drugs during all those ER visits prior to being admitted to the detox centers. Both times in the detox centers it became obvious that I suffered with severe chronic pain as I attempted to go completely off of the pain medication. The pain was so bad I could not sit still, lie down or do anything. I looked like a fish out of water, squirming in pain and rolling back and forth on the floor in agony. It was quite obvious to the doctors I suffered from chronic pain and so I was released into pain management. I progressively got worse and for over two years I could not even get out of bed except to go to a doctor visit or hospital. Because the doctors didn’t believe my symptoms were from an antibiotic during those first few years (now they do), they referred me to a psychiatrist. My family also assumed the same thing as the doctors, that I was crazy. In addition, from all that was going on in my life, I found myself now going thru a divorce. I then attempted suicide. That was about my lowest point. I thank God everyday now that I survived. Now, the doctors do believe that the antibiotics, called fluoroquinolones (FQ) caused my injuries, however, there are no cures available as of yet.

I have been diagnosed with irreversible nerve damage, muscle damage, heart damage requiring the installation of a pacemaker as well as fatigue and muscle weakness and severe, never-ending chronic pain in my legs, arms, back and neck. The anxiety reactions and panic attacks that I suffered during the first four years of the reaction were actually diagnosed as tiny seizures but they have resolved after I started an alternative therapy which I believe helped cure my anxiety. I have other secondary problems as a result of the nerve damage I won’t mention here. I cannot stand up for more than 15 minutes.

Just prior to my adverse drug reaction to Cipro and Floxin, I was taking over the family business. My wife had finished her doctorate degree and joined a medical practice and I had a B.S. degree in Environmental Science and then completed the Master Plumber’s program and received my Master Plumber’s License. For the first time in our lives, we both started making good money and we were in the process of buying our first house. We were living the American Dream until those tiny pills turned that dream into an American nightmare.

Since that day I lost everything. I am now divorced, have lost my business, my house, trucks, equipment and everything else I owned and loved. I have lost the ability to work and support myself and most of all will probably never have a family at this point. A cannot live any kind of normal life other than being confined to my parents house in a 12 x 8 room where most of the time I lay in bed.

I have been living with my parents for 3 years now. They want to sell their house and move to Florida and they do not want me coming with them. Because I am financially ruined with lawyers constantly trying to collect money from me and take me to court for bills I cannot pay, I may end up on the street, homeless. I had to liquidate my 401 k to pay for medical treatments that didn’t work. All I have now is an income of $700 a month from SSI of which roughly $400 goes to medical expenses where I am left with $300 a month to pay for rent, food, utilities, transportation and all the rest of my expenses.

Although I live in severe chronic pain everyday and my financial situation is dire, I believe God will protect me and I believe that I will somehow get thru this and things will be all right. What keeps me going is the belief that I have a job to do warning others about the crippling dangers associated with these drugs and stopping this nightmare from happening to others. There is something very wrong with this class of drugs and also with the fact that nothing has been done about this by the FDA or the pharmaceutical companies. There is no reason why these drugs should be used as first-line agents when other much safer, cheaper and just as effective non-fluoroquinolone antibiotics are available and warranted. These FQ drugs were originally used as last-line of defense antibiotics to be used only when nothing else was available but have been being used as first line agents because of the huge profit margins that “patented” drugs bring in as opposed to the generic versions of other older antibiotics. These FQ’s were always banned in the use of children and no one under the age of 18 was to be prescribed an FQ except on a compassionate use basis available only to certain kids with cystic fibrosis or one of the few other indications where FQ use was warranted. However, this past year, FDA approved the use of Cipro to be used in all ages from newborn on up for various indications and other FQ drugs are also being approved for pediatric use. These FQ’s will most-likely be used in children on a first-line basis.

There has never been a Dear Doctor letter sent to physicians warning them of any of the serious, crippling and permanently disabling reactions that can occur with FQ use at doses as low as one pill, despite a petition by Public Citizen for FDA to do so as well as citizen complaints, letters and phone calls. The bottom line is that Physicians are still not being warned of the irreversible, crippling ADR’s associated with the use of Fluoroquinolone drugs and new victims are turning up everyday.


Name: Joel
State or Country of residence: Georgia
Sex: Male
Age: 48
Quinolone taken: Cipro
Reason for the Quinolone: Suspected UTI
Was a safer antibiotic tried first? : No
How long did you take the Quinolone for? : 5 days
How long ago did you take the Quinolone?: First week of January, 2005
How much have you recovered as of now?: 70%
How often do you relapse or cycle?: Ongoing
Does your doctor agree the Quinolone is the cause of your problems?: No
Do you have a history of seizures or neurological problems?: No
Please list anything your doctor did that helped in your recovery: Nothing
What has helped you in your recovery?: Relaxation, OTC inflammatories

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Joel's Story

I took Cipro for 5 days for a suspected UTI (later found out I did not have an infection at all).
On the day I took the last one I was hit with tendon pain all over my body, especially the front of both knees and in both hips.

Knees and hips are better (not completely back to normal but better) but still feel aches in my shoulders, feet, ankles, back, chest.

It has been 6 weeks and am hoping to continue to improve over time.


Name: Mark
Email: mnawara@aol.com
State or Country of residence: AZ / USA
Sex: Male
Age: 42
Quinolone taken: Avelox
Reason for the Quinolone: Sinus Infection
Was a safer antibiotic tried first? : No
How long ago did you take the Quinolone?: 6 Months
How much have you recovered as of now?: 60%
How often do you relapse or cycle?: Every few weeks
Does your doctor agree the Quinolone is the cause of your problems?: No
Do you have a history of seizures or neurological problems?: No
Please list anything your doctor did that helped in your recovery: Nothing
What has helped you in your recovery?: Exercise, drinking water
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Mark's Story

It all started when I had a sinus infection back in September of 2004.
My doctor gave me Avelox.

I started to get a strange taste in my mouth which followed by seeing a ton of floaters in my vision. Next I started to get muscle twitching through out my body. Went back to the Doctor and had a brain MRI, which was normal and blood work that was also normal.

During this time I had major insomnia and I felt that I could not sit still. I felt very stressed out. In November, I started getting a burning pain in my upper back and a weak painful feeling in my hands. The feeling in my hands is now gone, but I still have the muscle twitches and very sore burning pain in my shoulders and upper back. I'm hoping this will go away as the on edge feeling has now gone away. I have not felt like myself since taking this drug. Stay away!!



Name: Alice
State or Country of residence: Indiana
Sex: Female
Age: 54
Quinolone taken: Levaquin
Reason for the Quinolone: UTI
Was a safer antibiotic tried first? : No
How long did you take the Quinolone for? : The second time for 4 days
How long ago did you take the Quinolone?: November 2004 and for 4 days December 2004
How much have you recovered as of now?: 50%
How often do you relapse or cycle?: Every 2 weeks
Does your doctor agree the Quinolone is the cause of your problems?: No
Do you have a history of seizures or neurological problems?: No
Please list anything your doctor did that helped in your recovery: Sent me to others doctors, tests, but hasn't really helped, just ruled out a few things

What has helped you in your recovery?: Deep breathing, positive attitude, prayer

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Alice's Story

In November 2004 had a UTI (first one ever) and was given Levaquin by my primary care doctor. Although the UTI was getting better, some symptoms like heart racing, teeth chattering, leg and arm tingling persisted then subsided until December 2004. At that time I thought I was having another UTI and I was snowed in so called the on-call doc and got another Rx of Levaquin and took it for 4 days then stopped because I felt awful. Since December I have been to the emergency room once because I thought I was having a heart attack (chest pain and left arm numbness - odd sensation in jaw) but no cardiac problem was found. The following week I went to my doctor with abdominal pain and pulse in abdomen and was sent to hospital for CT of abdomen and then MRI of head and neck (was also having neck pain). Have seen gastroentologist (for the ab pain and had a colonoscopy and all ok there) -- went to a neurologist, but he has not looked at my MRI, only the radiologists report and I don't get to see him again until March 9th. I've had NUMEROUS blood work all normal --

Some days I feel good - no symptoms, then out of the blue I feel very nauseated and my left leg feels heavy and weak -- sometimes arm tingling or icy feeling in arms -- teeth chattering sometimes at night with heart racing (that feeling like you've drank too much coffee). I have not taken ANY medication for over two months now -- not even aspirin or Tylenol -- Have hot flashes and night sweats (or whatever they are) all the time -- my blood pressure used to be low (122/50) and now it goes between 155-168 over 90 --

when I told my doctor that I had been looking on the internet about possible reaction to Levaquin he said 'oh I doubt it' -- I am frustrated, especially today 2/21/05, because I went to bed feeling nauseated, had those teeth chattering or jittery feelings and leg pain and still have all those symptoms this morning. When I am feeling 'normal' I tend to forget about it and hope that it has all passed. However, in reading these stories I know I have a ways to go. I am going to ask my doctor about the connection to Levaquin tomorrow when I see her and still plan to keep my 3/9 appointment with the neurologist. I have called the neurologist several times, but they don't call me back except to tell me last week that they wanted to send me to a rheumatologist!

I have felt like many of you who feel you are going crazy, but know that there is something going on here and I plan to tell everyone I know and care about to not ever take Levaquin or any of the other drugs in that family!!


Name: Jouj
Email: la_ratte@hotmail.com
Sex: Female
Age: 32
Quinolone taken: Tavanic (Levofloxin)
Reason for the Quinolone: OTIT
Was a safer antibiotic tried first? : No
How long did you take the Quinolone for? : 10 Days
How long ago did you take the Quinolone?: 6 Weeks
How much have you recovered as of now?: Less than 10%
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: Nothing
What has helped you in your recovery?: Nothing
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Jouj's Story

Well after a month from taking Tavanic, from 10 days my ankle start to act funny, I wasn't able to walk, my ankle hurts it's swollen the doctors said that it's from Tavanic, I don't know what to do I have a lot of pain and swelling, the doctor is thinking of an immobilization of my leg. I am 32 and have a very active life I do a lot of sports but now I can't do anything.



Name: Christine
Email: mmoncrief@rogers.com
State or Country of residence: Ontario, Canada
Sex: Female
Age: 22
Quinolone taken: Naladixic Acid, Noroxin, Ciprofloxacin
Reason for the Quinolone: Urinary Tract Prevention due to Reflux condition
Was a safer antibiotic tried first? : Yes
How long did you take the Quinolone for? : 1988 to 1993 and 2000 to 2004
How long ago did you take the Quinolone?:
How much have you recovered as of now?: 20%
How often do you relapse or cycle?: About every 4 weeks
Does your doctor agree the Quinolone is the cause of your problems?: No
Do you have a history of seizures or neurological problems?: No
Please list anything your doctor did that helped in your recovery: Massage Therapy, Psychiatric referral
What has helped you in your recovery?: In 1993 - Lactobacillus Acidophilus, Today - same plus Omega 3, Vitamin B and Ecinachea

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Christine's Story

NOTE TO THE READER: This story is written in the first person but it is being written by Christine's mother as she relates things to me. She currently does not want to deal with this forum, she just wants to concentrate on getting better. I am writing her story, in case in helps someone else.

The course of medication started as a result of a diagnosis of vesicoureteral reflux on the left side. I had a severe allergic reaction to Bactrim in March 1988 and the doctor prescribed Naladixic Acid on a maintenance course. I was six years old at the time.
I was finally taken off the drug due to side effects such as skin peeling off my fingers, severe ankle pain and gastrointestinal problems (loss of bowel and bladder control).

Was then given Noroxin for 10 days and gastro problems continued. Was taken off that and given Macrodantin and ended up with symptoms of asthma and bloody mucus and lung irritation. After five years of transferring back and forth between Naladixic Acid and Macrodantin, and two positive ANA tests as well as a Dientamoeba parasite, my mother called a halt to all drugs.

She started me on a course of Lactobacillus Acidophilus and I started to recover. From 1993 to 2000 I was not on drugs and had No Problems. I was extremely successful in life, school, etc - won the Principal's prize award - top student in High School - Ontario Scholar, etc, etc, Headed off to University to study music.

Late in 2000 (First year of University) I developed a Urinary Tract Infection and visited the University Clinic, they RX'd Ciprofloxacin.

About two weeks after finishing a five day course, I started to feel like all the muscles in my body hurt, I couldn't concentrate properly, I was so tired all the time. I thought the UTI had developed into a Kidney Infection and returned to the clinic. They prescribed more Cipro. This pattern continued until I asked to see a specialist. He did all kinds of kidney function tests and told me there was really no problems with my kidneys - she suggested I go for massage therapy, which I did. She also prescribed more Cipro - an open ended prescription which I could fill any time I thought a UTI was occurring. This pattern continued until last November when I felt terrible and assumed I must have a major Kidney infection and started back on Cipro - only this time I took it for a full 10 days - to make sure the infection was really gone!

I finished the medication and could not believe what was happening to me. I could not get out of bed, I was so exhausted. Every muscle in my body hurt and then the "voices" started. Every sound in the room was amplified. I could 'hear' the electricity running through the wires! I could hear my parents discussing me, even though they lived 2 hours away! I called my parents because I thought they were trying to communicate with me telepathically. The pressure in my head was so severe, the pressure in my chest was terrible. My level of anxiety was incredible. I couldn't handle University and terminated my courses. I couldn't handle my part-time job and quit that. I came home and tried to explain how I felt to my parents, I felt so disconnected from reality. They immediately took me to our GP - he sent me to a psychiatrist. He told me, he believed, I had toxic levels of drugs in my body causing the psychotic episodes.

I have been at home with my parents now since December 1, 2004 and have not had any more Cipro since late November. I still feel very scared, have had two relapses with voices, supersensitive hearing, still have muscle aches and still have periods of extreme fatigue and no motivation to do anything.

My mother has been trying to figure this thing out and she discovered your web site. Now, at least, I know I wasn't going crazy. I started taking lactobacillus again and thanks to this site, started on Omega 3, vitamin B and Echinacea. The last few weeks, I found a job - factory work. It's OK, I like it and I feel like I am at least, being productive.

I am still scared and still afraid to assume any role involving a stressful environment. I am going to continue what I am doing for a while and hope that I can get past this.

I haven't gone back to my GP or the Psychiatrist. I don't believe they can do anything positive for me. I believe I have to get this drug out of my system and deal with any residual damage it has done. I am angry that my life has been devastated but I am more interested in getting myself back. February 20, 2005

Name: Dorothy
State or Country of residence: Pennsylvania
Sex: Female
Age: 61
Quinolone taken: Levaquin and Cipro
Reason for the Quinolone: For an ear infection and diverticulitis
Was a safer antibiotic tried first? : Yes
How long did you take the Quinolone for? : 3 doses, 7 doses
How long ago did you take the Quinolone?: First time March 2004 Second May 24th 2004
How much have you recovered as of now?: 60%
Does your doctor agree the Quinolone is the cause of your problems?: No
Do you have a history of seizures or neurological problems?: No
Please list anything your doctor did that helped in your recovery: Nothing
What has helped you in your recovery?: magnesium postassium aspartate for aching teeth; physical therapy for dizziness; MSM and diet to detoxify; electromagnetic and UV light therapy for radiculopathy (burning pain in pelvic region); adrenal extract for chronic fatigue; a rice bag (6" x 9" filled with 1 cup rice) heated in the microwave for 40 seconds on high under my pelvis enables me to sleep on my back for an hour or more

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Dorothy's Story

In 2/2004, Levaquin gave me unstable angina after three doses. In June, I had two TIAs, which may not have been related, but I experienced dizziness and blurred vision from then on.
When a different Dr. insisted I take Cipro in December, I was unaware of the relationship.

After seven doses I had terrible burning pain that moved from the left side of my lower back to the center, then up my spine. It stopped between my shoulder blades. Then at 3:00 a.m., I woke feeling as if I'd been kicked by a horse. I found this website (PTL) and stopped the Rx. Gastroenterologist said, "I don't think Cipro would cause back pain." !!! I'm so thankful not to be worse.

The detox diet is a challenge: eating every two hours, alternating carbs and protein, making everything from scratch. The chronic fatigue and mood swings were very upsetting. I am retired, so the only financial impact has been gas for trips for therapy. Insurance should pay for most of the visits. However, I can't sit for more than a short time, even with a thick pillow. Thanks so much for this website. It was a life saver.

Name: Bonnie
Email: bmbeliever@aol.com
State or Country of residence: MA
Sex: Female
Age: 57
Quinolone taken: Cipro x2 & Levaquin x2 1 for 30 days
Reason for the Quinolone: Upper respiratory and sinus
Was a safer antibiotic tried first? : No
How much have you recovered as of now?: Less than 10%
How often do you relapse or cycle?: Not sure just found out what has been wrong
Does your doctor agree the Quinolone is the cause of your problems?: No
Do you have a history of seizures or neurological problems?: No
Please list anything your doctor did that helped in your recovery: Nothing
What has helped you in your recovery?: Started chelated magnesium
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Bonnie's Story

Feb 12 took last Levaquin had severe shoulder pain. Since I started I got worse when I took the last pill by 12pm it was all over my body with severe pain and for 5 min I could not see, I began getting heart cramps for a better word, which I have been experiencing over the last 10 months with many tests showing nothing.
This is too painful to complete all that has gone on I could do over the phone better. Will give # if a # is supplied for me to call.

 

Recent Additions for January 2005

Summary
Name: Steve
Email: jefeche@yahoo.com
State or Country of residence: Canada-Toronto
Sex: Male
Age: 33
Quinolone taken: Cipro
Reason for the Quinolone: Prostatitis
Was a safer antibiotic tried first? : No
How long did you take the Quinolone for? : Two Weeks
How long ago did you take the Quinolone?: Sometime before 2003
How much have you recovered as of now?: Less than 10%
How often do you relapse or cycle?: Constant: No relief has of yet
Does your doctor agree the Quinolone is the cause of your problems?: No
Do you have a history of seizures or neurological problems?: No
Please list anything your doctor did that helped in your recovery: Doctor prescribed Paxil saying he thinks it is depression.
Was referred to Psychiatrist for possible Somatitization Disorder. Now thinks I may have Fibromyalgia. I refuse to see him anymore and Doctor shop until I find someone who will believe me.
What has helped you in your recovery?: Did not really make the connection it was related to Quinolone drug reaction until last year. In 2003 I researched Neurological pain and found that so many of the symptoms I have are related to the intake of this drug. I don't really know what to do but believe I need to change my diet and take supplements. I would welcome anyone to give me advice that I desperately need.

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Steve's Story

This had changed my life very much. I am now not able to work and am losing my apartment. I will put on the street from this. I lost the women I love because of this. I basically try and stay alive and drink to calm the pain down. For some reason alcohol seems to be the only think that takes the pain away. I have burning sensations all over my body. Pain in all areas of my body. Leg pain Arm pain chest pain. Heart beats irregularly and flutters constantly where I feel I am dying. Spine feels like it will snap in half. feel like things are crawling under my skin. Leg muscles feel like they are tearing. Heat flashes, cold spells. Lack of sleep, can not sleep at all wake up every hour like clockwork. Constantly tired all the time. I wonder what it will be like to live on the street when I get evicted with this illness. Winter time now and that will be fun in a cardboard box. Hopefully I can manage to find vitamins or have people buy them for me so i can try and treat myself.

Fear I will have a stroke or heart attack, because of chest pain.

Still have my memory in tack and concentration, but I feel like I am fried or continually frying in the brain due to this drug.

I guess if I die at least I will know what it was from now - what a great thought, but I suppose sometimes I just don't care, no one else does.

Guess I will stop typing now since I feel someone is driving a nail into head and am having shocks all over.

I wish no one this pain and suffering.


Name: Name Withheld
State or Country of residence: United States
Sex: Female
Age: 16
Quinolone taken: Levaquin
Reason for the Quinolone: Wisdom Teeth (mistake - there was NEVER an INFECTION)
Was a safer antibiotic tried first? : No
How long did you take the Quinolone for? : 5 Pills
How long ago did you take the Quinolone?: March 2000
How much have you recovered as of now?: Still in very bad shape
How often do you relapse or cycle?: Ongoing symptoms
Does your doctor agree the Quinolone is the cause of your problems?: Yes
Do you have a history of seizures or neurological problems?: No

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A 16 Year Old's Story as written by her sister

The Story of A Child Levaquin Victim
In March of 2000, my little sister, who was 16 years old, developed difficulty hearing in her right ear. Her ear, nose, and throat specialist ordered a CAT scan. The radiologist told her ENT doctor that she had a sinus infection. Apparently the ENT specialist didn’t bother to read the CAT scan and he concurred with the radiologist. We later found out after consultation with another doctor that a wisdom tooth had punctured the large right sinus cavity--and she never had an infection, and this fact should have been obvious to the radiologist and the ENT if he had actually read the CAT scan.

Despite the misdiagnosis, this would not have been a problem if the ENT had prescribed a safe antibiotic for my sister. Instead, he prescribed 500 mg of Levaquin (levofloxacin, a fluoroquinolone antibacterial) once a day. He did this despite the numerous pediatric warnings that are clearly stated in bold and large font in the Physician’s Desk Reference. According to Ortho-MacNeil, the maker of Levaquin, Levaquin is not supposed to be prescribed to anyone under the age of eighteen. The prescription was filled at a local Walgreens pharmacy, which provides Medi-Spam Corporation’s package inserts for patients. For some reason, Medi-Spam did not put the pediatric warning on their profiles even though the company that Osco uses does. Consequently, my family was not told by my sister’s doctors or the pharmacy that this medication was dangerous to children.

After my sister took the fifth pill, it was as if a bomb went off in her body. She collapsed at school and had to be half carried out of the building to my mother and me. She said every joint in her body ached; she was dizzy and her skin was raw with a rash. Her right wrist was red and swollen. My mother called the doctor. He refused to talk to her, but instead had the nurse tell my mother that my sister was having a “little allergic reaction” to the Levaquin and to give her a lot of water and Benadryl--which we did. The next day, my sister could not get out of bed. All of her joints ached and she was in so much pain she was curled up in the fetal position. She cried out when we opened the shade in her bedroom. She could not tolerate any light because she said it seemed as if someone was shining a high-powered spotlight in her face every time she opened her eyes. She had a terrible headache, the rash persisted, she was sick to her stomach and her hands shook so much that it was difficult for her to hold a glass of water. My mother kept calling the doctor and he refused to talk to her. After several calls, his nurse hollered at my mother and said: “I told you the doctor said it would take a couple of days for the medication to get out of her body.” The nurse then called in a prescription for Biaxin, which my mother had told the ENT my sister could take safely. But it was too late.

Since the doctor was refusing to help, I turned to the Internet to see if anyone else had reported the same symptoms as my sister. As it turned out, it is not just children who have experienced the strange mix of symptoms that my sister experienced. We were shocked to find out that Levaquin (and indeed, all fluoroquinolones) has a questionable safety record for people of all ages. Seven fluoroquinolones have been pulled off the market in the United States because of severe adverse drug reactions like my sister’s, and many more have been pulled from worldwide markets, or their use has been restricted to life-or-death situations because of severe adverse drug reactions, including death due to heart and renal failure. Levaquin has not yet been pulled from the market, but because of my sister’s symptoms and the experiences of the other tens of thousands of people who I found out experienced the same symptoms, I believe it should be.

There was now no doubt in our minds that my sister was not experiencing a mere allergic reaction. Allergic reactions are transient occurrences, but her symptoms showed no signs of clearing up, and in fact, they were worsening by the day. Within days of her initial symptoms, her Achilles tendons and rotator cuffs were at the point of rupturing. We had to rush her to the emergency room. The emergency room doctor looked at her chart and said: “who and the hell is the moron who prescribed this medication? It is never supposed to be given to anyone under the age of 18.” The doctor went on to say that anytime someone of any age came to the emergency room with an unexplained tendon problem, she always asked if they had been prescribed a fluoroquinolone antibacterial, and she found that quite often, they had been.

My sister was now in a boot cast and a sling in a desperate attempt to stabilize her tendons by immobilizing them. She could not tolerate natural or artificial light. She began to experience other nervous system symptoms, such as anxiety, hallucinogenic dreams, and, most frighteningly, a sudden, unexplained compulsion to commit suicide. Please know that my sister had never experienced any psychiatric or psychological disturbances in her life, but that fluoroquinolones are known to induce psychological side effects, and suicide is now finally listed as a possible side effect of fluoroquinolone use. In the weeks that followed, my family took my sister to a series of doctors who ruled out arthritis, lupus, MS and a host of other diseases. It always came back to the fact that she was fine before she took the Levaquin.

When we realized that no doctor in Illinois could help her we took her to Georgetown University to see a man named Dr. David Flockhart. He said she had had a severe adverse drug reaction to Levaquin and that it should never be prescribed to anyone under the age of 18, although he had seen many adult patients who experienced the same thing my sister did. He said there is no cure for her condition--that the medication had penetrated her bones, her tendons, her muscles and her nerves. Levaquin is a negatively-charged particle that tends to bind to positively-charged calcium and magnesium found in the bones and other soft tissues. He also said the Levaquin had blocked the GABA receptors in her brain, causing the vision disturbances, tremors, rashes, and psychological effects. He said it would take five to six years for this medication to “grow” out of her body and then she would be left with the damage it had done to her bones, nerves, and soft tissues.

We began to deal with the fact that our lives were going to be changed forever. My sister went from being a healthy, active, extremely artistic 16-year-old whose talent has helped her community and whose artwork has won awards to a teenager who couldn’t even lift a gallon of milk because of the pain in her hands and shoulders and the threat of rotator cuff rupture. She went from being a proficient martial artist who was one step away from a black belt in Tae Kwon Do to a teenager forced to use a wheelchair because her knees and ankles hurt so badly because the cartilage and tendons could spontaneously rupture at any moment. She went from being a happy-go-lucky teenager with fourteen years of experience playing the piano to a world-weary young adult who learned all too well the challenges faced by people with disabilities.

Those who have experienced even mild adverse drug reactions to fluoroquinolones often attest that they experience periods of lesser symptoms followed by periods of more severe symptoms. This cycling has occurred in my sister, as well. For weeks and even months at a time, she has been unable to perform even the simplest functions, such as carrying schoolbooks or walking to class because of pain, swelling, and threat of tendon rupture in her limbs. She has experienced spontaneous tearing of the cartilage in her ribcage, including an unprovoked rupture while in her wheelchair on the way to one of her high school classes. For the initial four months of the adverse drug reaction, she had to wear black sunglasses to block out all light because she was so sensitive to light. Her vision returned to normal, but then some time later, she lost her peripheral vision. It returned a few months later. Sometimes her symptoms are localized to areas of her body like her arms or feet, and sometimes they affect her entire body.

It has been four years now. My sister has been in 29 orthopedic casts for her arms and legs in order to prevent tendon ruptures. Her hands still shake. Periodically her vision is affected. Pain is now a daily factor in her life--as she says, it’s not a question of when she is in pain, it is a question of how much pain she’s in every day. Typically, changes in the barometric pressure influence how much pain she’s in. She is our “walking weather person” because the pain becomes horrible for her when the weather changes. Periodically the tendinitis in her peroneal tendons and Achilles tendons flare up so badly that she cannot walk. The tendons in her arms, wrists, hands, fingers and shoulders still flare up, limiting her ability to do common, daily tasks such as writing and typing. There are still days when the pain is so great she cannot get out of bed.

She has to use a wheelchair scooter on her college campus because she cannot walk long distances. She cannot open doors for herself and can only attend classes in buildings that are accessible not only in that they have elevators and ramps but buttons to open doors as well. During her freshman year, the plantar facia in her right foot ruptured while she was sleeping. The cartilage in her right knee began to flake off, which causes immense pain. She was my maid of honor in my wedding last year, but we were afraid up until the last minute that she would not be able to attend because her doctor raised the possibility of needing emergency surgery. As it was, she had to wear a full-leg cast on her leg under her dress and had surgery not long after my wedding.

What is most devastating, however, is that my sister is and has always been a talented artist. When she was a small child, she figured out how to draw three-dimensional objects on her own. Her artwork has won awards both in and out of school since she was in grammar school. Her work was used by the Roselle police office for its DARE program when she was eleven years old. Her animation has been used by the College of DuPage as a teaching tool since she was twelve. She began designing logos and artwork for area companies and schools in junior high and continues even today, as much as she is able to. She has consistently been described by every art teacher she has ever had as being a creative genius. Levaquin has stolen away her ability to use her God-given talents in career and volunteer activities. She can only draw for a few minutes or an hour a day, and even then she experiences pain when she does so. She had planned to be an animation artist since she saw her first Disney cartoon. Now, her dreams have been shattered. Her artwork is no less brilliant, but she simply cannot use her gifts to the extent that she otherwise would have been able to.

As you can tell, Levaquin has devastated my sister’s life. It has taken away her health, her career, and her ability to have a normal life. In fact, our whole family has been devastated by this senseless tragedy. My family was never warned that Levaquin could do this. Indeed, most doctors are not aware of the devastating, permanent adverse drug reactions caused by Levaquin and other fluoroquinolones, or if they know, they do not understand the seriousness of the situation. Some, like my sister’s ENT, flatly refuse to acknowledge the possibility of adverse drug reactions at all, despite overwhelming evidence to the contrary. The fact that the warnings required by the Food and Drug Administration are not adequate and do not acknowledge the severity and permanence of the adverse drug reactions does not help.

My mother has talked to the FDA numerous times. The last time, a woman in Sally Singer’s office said to my mother: “there are so many angry people out there because of Levaquin. Some day we are going to have to do something about this drug.” When my mother asked when, she refused to answer my mother. The British have given Levaquin the Black Triangle--the equivalent of saying that a drug is under investigation to possibly be pulled from the market because of the severity of adverse drug reactions. Why has the FDA not placed Levaquin and other fluoroquinolones under such scrutiny?

On behalf of my sister, my mother is one of the tens of thousands who have filed adverse drug reaction reports with the FDA, yet she has never once received a phone call or email to follow up with her. No one at the FDA seems to be concerned that a child has had the rest of her life ruined because of a few pills.

The FDA and the drug companies feel that side effects like my sister’s are not considered “serious” because she is not dead. It doesn’t matter that my sister and all of the other fluoroquinolone victims have had their lives ruined and are forced to live in constant pain.


Name: Kevin
Email: oldchina@fastmail.fm
State or Country of residence: Ontario, Canada
Sex: Male
Age: 48
Quinolone taken: Cipro
Reason for the Quinolone: Prostatitis
Was a safer antibiotic tried first? : No
How long did you take the Quinolone for? :
How long ago did you take the Quinolone?: The last time was 11 months ago
How much have you recovered as of now?: 70%
How often do you relapse or cycle?: 1 or 2 times per month
Does your doctor agree the Quinolone is the cause of your problems?: No
Do you have a history of seizures or neurological problems?: No
Please list anything your doctor did that helped in your recovery: Every test imaginable - all negative. Offered anti-depressants that I did not take. He did give me sleeping pills. He also suggested a shrink!
What has helped you in your recovery?: I went to a Naturopath and began taking Probiotics and digestive enzymes with every meal as well as vitamins and herbal tea. Drink lots of water

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Kevin's Story
I first took Cipro in early 2001 as my urologist prescribed it for suspected prostatitis. I had blood showing in my urine on and off for some time and they did many tests including a very unpleasant cystoscopy (up my spout). Also an IVP showing that kidneys and bladder were OK. He did say that my prostate felt suspect.
I took the Cipro that time for about 6 weeks. I had noticed that my joints began bothering me but just thought is was age and my work. I had been a renovation contractor for almost 15 years at that time. I had x-rays etc and of course everything was fine (for my age and type of work). When ever I had flair ups of the bleeding I took more of the stuff - 2 500mg per day usually for a 2 week period. Then last year in Feb. I passed a kidney stone and the bleeding stopped.

However after taking Naproxen and Cipro, things really began to get bad. I thought that now that I had passed a stone I would be great. I began to get panic/anxiety attacks, some in the middle of the night. I could fall asleep but never stayed asleep for more than a hour at a time. When I awoke my heart would be pounding, I would be chilled to the bone and panicking. Twice I went to emergency with my wife because I thought I was about to die. I lost 10% of my body weight in 2 weeks. I lost my appetite. I began to have alternating diarrhea and constipation. I had a pain in my side and one of the worst things was the incessant ringing in my ears which can keep me awake at night sometimes. As I am self employed I wasn't fired but I can no longer do the same work. The work I do now allows me to do a lot at home. My wife has been very understanding without really knowing what has been going on. I was even convinced that I had a tape worm and took stuff for it. I am convinced now that the drug so thoroughly eradicates the normal bowel flora that the body can no longer break food down and extract the vitamins and minerals it needs. As of today I am feeling much better - seldom any anxiety attacks. I have knee pain in both knees, hip painthat radiates to the groin area both noticeable going up and down stairs or getting in and out of the car. My ears still ring but not quite as bad. My sleep is still not what it used to be but much better. I have put most of my weight back on.

I will not touch another antibiotic of any kind unless I am on deaths door and there are no other options. To all you people out there the only advice I can give is to try and hang on, take Probiotics, hi fiber diet with plenty of vegetables and fruit, water without chlorine and try to do some regular exercise. Get off all the drugs you can. The body is able to heal in time - it may take at least a year if not some years.



Name: Dave
Email: daveshep01@juno.com
State or Country of residence: KY
Sex: Male
Age: 36
Quinolone taken: Levaquin
Reason for the Quinolone: MRSA in an infected cyst on my leg
Was a safer antibiotic tried first? : No
How long did you take the Quinolone for? : Started Jan.3rd thru Jan. 13
How long ago did you take the Quinolone?: Started Jan.3rd thru Jan. 13
How much have you recovered as of now?: 10%
How often do you relapse or cycle?: Less than 10%
Does your doctor agree the Quinolone is the cause of your problems?: No
Do you have a history of seizures or neurological problems?: No
Please list anything your doctor did that helped in your recovery: Gave me anti-inflammatory drugs and non-habit forming muscle relaxers both of which don't work
What has helped you in your recovery?: Move around and take pain killers
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Dave's Story

I had a "cyst" or "boil" on my leg that tested positive for MRSA and was put on Levaquin for 10 days.
On the 9th day of therapy I got up and went to work only to come home with extreme muscle throbbing and weakness. It hit me very quickly and I had to go back to the doctor.

He said I had the flu and gave me Tamiflu to take.

I have been off of work since that day and have been to my PCP many times and get a different diagnosis every time that I go. He has never taken blood or performed any tests. I am looking for a different doctor now.

I have muscle weakness and pain in both thighs down to my ankles. My arms ache when I use them like a normal day of work. My biceps ache to my wrists and even my fingers ache. My neck throbs and my hips are starting to get sore. I have tried to do light exercises in an effort to relieve the symptoms but it doesn't help. I have many accumulated "sick" days and have to keep taking off in an effort to find out what is going on. They will run out eventually so I am in a rush to get answers.


Name: Helen
Email: acenzi@frontiernet.net
State or Country of residence: New York
Sex: Female
Age: 60
Quinolone taken: Levaquin 500 mg /day for 10 days
Reason for the Quinolone: Pneumonia
Was a safer antibiotic tried first? : Yes
How long did you take the Quinolone for? : 10 Days
How long ago did you take the Quinolone?: 3 Months
How much have you recovered as of now?: 40%
How often do you relapse or cycle?: Every 2 days
Does your doctor agree the Quinolone is the cause of your problems?: No
Do you have a history of seizures or neurological problems?: No
Please list anything your doctor did that helped in your recovery: told me to stay off the computer and take Sudafed for the tinnitus
What has helped you in your recovery?: Nothing

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Helen's Story

I was a healthy and young 60 yr. old grandmother. I smoked and I quit when I got pneumonia. I blamed much of what I was feeling on withdrawal of nicotine. No one warned me about this drug. I cry everyday, the ringing in my head is maddening. I have started getting things in order because I feel like I'm dying. It's been three months since being poisoned by this drug and I think that I'm just getting used to some of the feelings, not really getting better

Name: Mark
State or Country of residence: Ohio
Sex: Male
Age: 40
Quinolone taken: Cipro
Reason for the Quinolone: Prostatitis
Was a safer antibiotic tried first? : No
How long did you take the Quinolone for? : Couple of days
How long ago did you take the Quinolone?: 3 Weeks
How much have you recovered as of now?: Less than 10%
How often do you relapse or cycle?: This is all new to me
Does your doctor agree the Quinolone is the cause of your problems?: No
Do you have a history of seizures or neurological problems?: No
Please list anything your doctor did that helped in your recovery: Nothing yet. I see him tomorrow
What has helped you in your recovery?: Swimming for exercise instead of weight-bearing exercise

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Mark's Story

I began taking Cipro 3 weeks ago. A couple of days after taking it, I began experiencing extreme joint pain and patella tendonitis. The aches wouldn't go away. Ibuprofen helped a little. I thought I just had the flu, at first. It has gotten worse, and I also have acute heart pain (like a pin-point burning that comes and goes). I have shortness of breath sometimes and moderate anxiety, too.


Name: Jackie
Email: dwreese@msn.com
State or Country of residence: Florida, USA
Sex: Female
Age: 41
Quinolone taken: Floxin
Reason for the Quinolone: UTI
Was a safer antibiotic tried first? : No
How long did you take the Quinolone for? : One half of one pill - One time
How long ago did you take the Quinolone?: December, 2003
How much have you recovered as of now?: 30%
How often do you relapse or cycle?: I have the problem on going
Does your doctor agree the Quinolone is the cause of your problems?: No
Do you have a history of seizures or neurological problems?: No
Please list anything your doctor did that helped in your recovery: Nothing
What has helped you in your recovery?: Magnesium and juicing greens

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Jackie's Story

In December 2003 I was told that I had a UTI.
I was given the drug Floxin which I only took 1/2 of the pill since I do not take drugs and I am a small framed woman and decided to take a small amount the first time just in case I had a reaction it might not be as bad.

Boy... was I wrong... About 4 hours after I took the drug I started to shake all over.. My right leg went numb and started to tingle.. Looking back on that day I was in shock and didn't know what to do. I noticed that my neck was retaining water and I had this pressure behind the left side of my neck.... It was then like a snow ball effect.. I started to develop so many strange side effects muscle twitches, burning throughout my whole body, sweats ,numbness, eye pressure, tingling all over my body, joint pain, my spine hurt so bad it felt like someone hit me with an iron rod, my stomach started to bulge out, the tendons inside of my body started to stick out all over. I looked 6 months pregnant.

My calf muscles began to twitch and move to the front of my leg. The tendons in my feet hurt so bad that I could not walk on my feet. I could not sleep, I cried all day, I had awful nightmares that even when I woke up I could still see and hear the sounds of my dream. I see spots, black, white and blue. I walk like I have been drinking, I have pressure in my head and ears most all the time. Foggy brain... At times I feel as though my thoughts are delayed. Its almost like an out of body experience... My body jumps, jerks twitches so bad it is hard to sleep. It was 9 months before I had my first sound sleep. I paced and paced for months.( Walking on the heels of my feet) I could place my foot flat on the ground for months.


I am still in Physical Therapy to help build up the strength in my legs and feet. I lost body muscle in my legs . I could go on and on......

Its been 13 months now for me.... Date today.... Jan 2005


I haven't found anything to help me. I just pray that God will give my the strength to help me through this and pray that it will go away... Feel free to e-mail me.... We all need all the support that we can get....We all need to hang in there......Jackie from Miami

 

Recent Additions for December 2004

Summary
Name: Suhas
Email: ssyerra@yahoo.com
State or Country of residence: MA
Sex: Male
Age: 34
Quinolone taken: Cipro
Reason for the Quinolone: Suspected UTI, Culture was negative
Was a safer antibiotic tried first? : No
How long did you take the Quinolone for? : 7 Days
How long ago did you take the Quinolone?: 2 Months
How much have you recovered as of now?: 30%
How often do you relapse or cycle?: I has not passed. Some days are worse than others
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: Nothing... asked to exercise regularly
What has helped you in your recovery?: Started Magnesium and Calcium Supplements and a vegetarian diet. No sugars or fats...

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Suhas's Story

Was given Cipro (500mg) for 7 days to treat a suspected UTI.
Experienced numbness of hands, Gout, dry mouth, eyes, neck, jaw and joint pains across the body, numb lower lip. Did not think it was related to the drug since neither the Doc or the Pharmacist mentioned anything. On the seventh day I called the Doc and he asked me to stop it right away. It was too late.

About 3 weeks after completing the dose I experienced severe fatigue and all the above symptoms again. Since then I still experience eye pain, neck pain, joint pains, muscle twitching and numbness that comes and goes around my knee, and hands/shoulders. Doctor says it is Fibromyalgia but acknowledges I may be allergic to Cipro. He says give a couple more months so that the toxicity in my body adjusts back to pre Cipro levels. Waiting for blood tests to rule everything else out...


Name: Carly
State or Country of residence: Texas
Sex: Female
Age: 49
Quinolone taken: Levaquin, Cipro
Reason for the Quinolone: Sinus infection, UTI infection, staph infection
Was a safer antibiotic tried first? : No
How long did you take the Quinolone for? : Multiple times throughout the years
How long ago did you take the Quinolone?: Starting in 2000
How much have you recovered as of now?: Less than 10%
How often do you relapse or cycle?: Did not know about the effects, just got off it
Does your doctor agree the Quinolone is the cause of your problems?: No
Do you have a history of seizures or neurological problems?: No
Please list anything your doctor did that helped in your recovery: Haven't gone back yet, just found out about the effects
What has helped you in your recovery?: Nothing at the moment
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Carly's Story

I was given Cipro after gall bladder surgery in 2000 and Levaquin over the next few years for several different issues.
I was diagnosed with arthritis in my spine and hip, and bursitis of the hip 2 years ago. I had no idea that it could have been caused by the medication until recently. All I know is that physical therapy hasn't worked and neither does medication other than a temporary measure.

I have severe pain down the left thigh, supposedly from the bursitis. My hip is always painful and my lower spine as well. I can no longer stand very long or walk very far without pain. I just took the last dose of Levaquin 2 weeks ago and have had chest pain, tingling in my hands and fingers, eye floaters, head and neck aches, and the bursitis has become acute.

I plan to see my doctor this week. She wants to put me on long term antibiotic therapy for a recurring staph infection...which I never had in my life until this year. I am going to tell her about my suspicions and will refuse anymore quinolone treatment. I wish I had known and I never would have let them treat me with it. I went from being relatively active to basically crippled.


Name: Gregg
Email: Greggcain@hotmail.com
State or Country of residence: LONDON UK
Sex: Male
Age: 26
Quinolone taken: Cipro
Reason for the Quinolone: Suspected infection (no tests)
Was a safer antibiotic tried first? : No
How long did you take the Quinolone for? : 2 Weeks - Six Month Update
How long ago did you take the Quinolone?: 3 months
How much have you recovered as of now?: Less than 10%, 80% at 6 months
How often do you relapse or cycle?: When drink alcohol, walk to far, chicken, caffeine
Does your doctor agree the Quinolone is the cause of your problems?: No
Do you have a history of seizures or neurological problems?: No
Please list anything your doctor did that helped in your recovery: MRI shows build up brain tissue
What has helped you in your recovery?: Take no drugs ever again. drink water to flush body, Try not to strain my body, On and off vitamins,
Try not to read too much on net, gets depressing

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Gregg's Story

Cipro, 2 weeks , 500mg, twice a day, no big deal I thought. Oh yeah, and voltarol 100mg for 2 weeks, which I now find out is lethal combination. All from a top notch urological surgeon who claimed I had tender prostrate, which I certainly feel I didn't.
so what happened.

my life has been absolutely killed, destroyed. I have lost sanity, work, girlfriend, family the lot. I was a bloody happy 26 year old fitness fanatic, accountant, sociable. Now my life is over.

While taking had severe depression, suicidal thoughts, confusion, tremors, sweats, spasms, psychosis, but hey, was so confused finished treatment. 3 months on, and just out of psycho hospital ,things are bad.

This fucking drug must be stopped and I would not give it to my worst enemy. Please mail me greggcain@hotmail.com with advice. I need help, these drugs are too lethal. Oh yeah, had MRI, build up of tissue on brain, could bleed at any time. It has sent me nuts.


Anyone, if u read this, stop stop stop those pills. They ruin lives and if I can help 1 person, it would be great. I feel so hard done by, its untrue. Will this go away or am I destined for a life of hell after taking some poxy pills????? Help!!!!!!!!!!!!!!! Gregg

6 month update from Gregg - Posted 12/07/04

This an update from about 6 months ago I guess.


Well, as u read, I ended up in a right state, really ill! No one would know unless u r posting on here! I am much better, mainly because the psychotic like symptoms have gone, I know where I am, don't think of suicide etc, it was too scary for words.

I sometimes feel shitty still, like when I had too much champagne at a party, I felt ill for about a week. I avoid chicken like the plague, but really find it hard to know what to stay clear of. What I must say is I find that this site is great, but don't go mad looking at the net, there are a lot of stories out there which might depress you.

I am certainly not the gym fanatic I was, I cant run, dance, etc yet, but i live very normal life, and hope to beat this once and for all, even if it takes years. Sometimes my body aches a lot, and I still get little tremors, but hey, its bearable. The head pressure bothers me, but i hope it will fly away soon. What I want is for these drugs to be put in the spotlight. They have embarrassed me, made me look like a mentally ill person, and of course people think u r making it up or something. I respect everyone one here, and truly believe the symptoms will disappear, in time. Love to all, feel free to mail me at greggcain@hotmail.com Gregg :-)



Name: Jeri
Email: jcbreality@sbcglobal.net
State or Country of residence: California
Sex: Female
Age: 46
Quinolone taken: Levaquin
Reason for the Quinolone: Over the years Bronchitis/Sinusitis
Was a safer antibiotic tried first? : Yes
How long did you take the Quinolone for? : Off/On for time it's been on market
How much have you recovered as of now?: 10%
How often do you relapse or cycle?: Did not realize my muscle pain from this until 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: ok...I am allergic to penicillin! was given Levaquin sometime back as the drug to take...I have had bed ridden crippling muscle pain...debilitating...have gone everyone...this reduced my life's joy so much...doctors said Fibromyalgia as nobody could pin-point!!!! last week was so sick with sinusitis...and I had Levaquin doctor said take it...after 3 I was doubly tortured...had a masseuse therapist come over...but now my knees ache...and knee bones crackle pop...side/buttocks....my doc said stop taking it..if you take one more it my own risk.....well after I read all the sites...I know that Levaquin screwed my life years ago...and I am afraid I will never be the same! I had to alter my real estate career...can't walk far...my joy is gone! I want to know if there is a class action on this damn company or whomever is at fault...I WANT TO BE PART OF IT
What has helped you in your recovery?: Every over the counter pain medicine...every ointment...therapy...tried Lexapro...could not tolerate.....NOTHING works

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Jeri's Story

AS YOU SEE ABOVE IT HAS AFFECTED ME DRAMATICALLY..AND I TRULY BELIEVE IF THIS PAIN INCREASES...ESPECIALLY MY HANDS AND ARMS MY CAREER WILL BE OVER...AND WHO IS GOING TO PAY ME!!!!! MY FAMILY IS AFFECTED...MY SON SAYS I COMPLAIN ALL THE TIME...I AM SEPARATED AS.. WELL THIS HAS TORN US APART


Name: James
Email: jimghan@aol.com
State or Country of residence: Michigan
Sex: Male
Age: 48
Quinolone taken: Cipro, Levaquin
Reason for the Quinolone: Diverticulitis
Was a safer antibiotic tried first? : No
How long ago did you take the Quinolone?: 2 Years
How much have you recovered as of now?: 30%
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: Nothing, I had to consult with Dr. Cohen and took magnesium to help rid my body of the chemicals
What has helped you in your recovery?: I think Chelated Magnesium and dark beer (also high in magnesium). No kidding.

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James's Story

Peripheral Neuropathy, very severe for over six months. Psychiatric disturbances. Mental fog.


Name: Wes
Email: cwpierce@verizon.net
State or Country of residence: Maryland
Sex: Male
Age: 39
Quinolone taken: Cipro and Levaquin
Reason for the Quinolone: Post Liver Transplant Infections
Was a safer antibiotic tried first? : Yes
How long did you take the Quinolone for? : Levaquin intravenously over a period of days
How long ago did you take the Quinolone?: November 2002
How much have you recovered as of now?: 60%
How often do you relapse or cycle?: Some days are fine, others I can barely walk
Does your doctor agree the Quinolone is the cause of your problems?: No
Do you have a history of seizures or neurological problems?: No
Please list anything your doctor did that helped in your recovery: At this point I am told nothing can be done
What has helped you in your recovery?: Eat healthy and exercise as much as I can tolerate. (This is not much.) Basically, I live with it as best I can

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Wes's Story

In 2001 I was informed that I needed a liver transplant due to a disease called alpha-1 antitrypsin. In November of 2002 I was transplanted and shortly after, (perhaps 12 hours), developed a severe abdominal and chest infection. I was transferred to ICU and put on intravenous Levaquin therapy. Almost immediately I started feeling extremely hot. My right arm started to tingle and get real hot in the area of the wrist joint. A large red raised area developed and began to itch.

None of this seemed to bother the doctors. I was sent home weeks later and put on Cipro while surgical wounds healed. I thought nothing of this. If I had the information this site provides I probably would have refused the Levaquin and asked for another antibiotic.

As time progressed after transplant I began to have severe joint and muscle pain. At this point in my life it is impossible for me to make a clenched fist. Likewise, I cannot fully clench my toes. I have lost several degrees of angle in motion of my joints. My gate has changed. I use to walk normally, now one only has to see me move a few steps to tell something is wrong. I can no longer play the sports I use to enjoy.

My skin has dramatically changed. The skin located around all joints has thickened and become very stiff. This also hinders joint movement and adds to the pain. I am now told I have a disease called scheleromyxedema (spelling may be incorrect). I wonder now if this whole situation was not triggered by the antibiotics as I never had any problems with my skin before the transplant. I have severe itching at times, especially where it has thickened. My skin now has an orange/tan hue to it. It regularly feels as if I am receiving bee stings or needle pricks in the areas of afflicted skin.

I am currently on full disability and probably will be for the rest of my life. The financial impact has been great. I had a great tech job and I had to give it up. I have a great respect now for others whom are disabled. I use to take for granted the ability to traverse stairs or walk up steep inclines. Both activities require an inordinate amount of time and cause a great deal of pain now. Because of joint pain it hurts to even put shoes on my feet.

I acknowledge the fact that I would not be alive today without these drugs but I wonder if other drug therapies might have been just as effective.



Name: Bev
Email: bthejh@yahoo.com
State or Country of residence: Vermont
Sex: Female
Age: 64
Quinolone taken: Levaquin
Reason for the Quinolone: Urinary tract infection
Was a safer antibiotic tried first? : No
How long ago did you take the Quinolone?: First time, 4months, second time, 2 months
How much have you recovered as of now?: Less than 10%
Does your doctor agree the Quinolone is the cause of your problems?: Yes, I would like to change my doctors opinion, he does believe it was the Levaquin. He has been very helpful and understanding.
Do you have a history of seizures or neurological problems?: No
Please list anything your doctor did that helped in your recovery: Gave me Clonazapam to help with nerve endings
What has helped you in your recovery?: Watch diet, take magnesium, calcium acidophilus, lots of spring water, light exercise

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Bev's Story

I have burning pain in my tongue, throat going down to my lungs, tongue feels swollen all the time. My face burns, eyes and sometimes inner ears. Burning in feet and legs, and arms, shoulders, arms and shoulders sensitive to touch. Had extreme genital burning. Have chills and can't be out in the cold. Can't have sunlight on skin or be to warm. Low body temperature. Have fatigue and have lost weight. Depressed. I am retired so no financial impact on my life, have great family support.


Name: Bill R.
Email: bwilliamson11@cox.net
State or Country of residence: Oklahoma/USA
Sex: Male
Age: 49
Quinolone taken: Levaquin
Reason for the Quinolone: Sinus infection
Was a safer antibiotic tried first? : No
How long did you take the Quinolone for? : 10 Pills
How long ago did you take the Quinolone?: Aug 2003
How much have you recovered as of now?: Less than 10%
How often do you relapse or cycle?: I am in constant pain
Does your doctor agree the Quinolone is the cause of your problems?: No
Do you have a history of seizures or neurological problems?: No
Please list anythin