Another terrible Levaquin tragedy – A child Levaquin victim.

If there is one Levaquin ( Levofloxacin ) story that sticks in my mind the most it is probably this one. Reproduced with permission from FQvictims.org

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. This fact should have been obvious to the radiologist and the ENT if he 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 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-McNeil, 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 Levaquin pill, it was 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 that 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 even 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 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 no doubt in our minds that my sister was not experiencing a mere allergic reaction. Allergic reactions are transient occurances, 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 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 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 bagan 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 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 as 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 soft tissue. He also said the Levaquin had blocked the GABA receptors in her brain, causing 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 a 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 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 teenanger 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.

For weeks and even months at a time, my sister has been unable to perform even the simplest functions, such as carrying schoolbooks or walking to class because of the pain, swelling, and the 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 highschool classes. For the initial 4 months of the adverse reaction to Levaquin, she had to wear black sunglasses to block out all the light because she was so sensitive to light. Her vision returned to normal, but then some months 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 4 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 tendonitis in her peroneal tendons and achilles tendons flar up so badly that she cannot walk. The tendons in her arms,wrists,hands,fingers,and shoulders still flair 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 grammer school. Her work was used by the Roselle police office for its DARE program when she was 11 years old. Her animation has been used by the College of Dupage as a teaching tool since she was 12. She baegan 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 destroyed my sister’s life. It has taken away her health, career, and her ability to have a normal life. In fact, our whole family has been devastated by this sensless 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, flately 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 womean 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 Traingle-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 the other fluoroquinolone victims have had their lives ruined and are forced to live in constant pain.  -Story told on 1/1/05    

Please warn your friends and family about the crippling effects of Levaquin and other quinolones.

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37 Responses to “Another terrible Levaquin tragedy – A child Levaquin victim.”

  1. Marilyn Smith says:

    I am so sorry to hear of your family problems. There is nothing worse than being in chronic pain and being so debilitated. Your sister is fortunate to have a sister like you that really cares. While I was in the hospital having my TAH, I contacted [5] five different Hospital Acquired infections and besides being on Vancomycin IV , the doctor also put me on levaquin po. I refused to take the levaquin because of so many side effects. I guess I was fortunate. But I did suffer 13 dislocations of the hip because the infection became so bad and the joint was not ready for a new hip. I ended up having 4 hip replacements on the right side because of the infections and the dislocations. I am still waiting for an apology from Dr. David Gibson of New haven Ct. This is just a warning, investigate your physician and always have a second opinion if you are not getting any better. ‘Doctors’ have fallen off their pedestils, they are not God.

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  4. Ruin says:

    I think this may be the worst of all the terrible stories. I’m beyond words by now, but if I had any, I’d post them. I just lie on my back, day after day, wondering just when and how it’ll finish me off and hoping it’ll be soon, but at least I’m not a mere child who could have had a whole, brilliant life. Your sister is very brave to have kept going like that.

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  8. Pattyann says:

    I took a 7 day round of Levaquin and I have been in living hell ever since. I have constant ringing in both ears, my heart has been pounding and fluttering so badly that it keeps me awake all night.
    I break out in a boiling sweat and I am shaking so badly on the inside, that I won’ t leave the house. I have become paranoid and very angry. I feel that I will lose control in public.
    My surgery was the 18th of April, and today is the 5th of May.
    How long will this last?

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  10. Boo Radly says:

    I am so sorry for your sister’s suffering – It is now epidemic – PBS has done a special on this FQ drug Fortune, MOJO – why are doctors saying they are clueless? They are not clueless they are twisted and the opposite of HIPAA. These drugs are killing and maiming patients globally – $$$. Our Fed Gov agencies and their contractors(TJC, QIO) refuse to report – one even when so far as to state in writing – Levaquin is NOT black boxed. I arrived at ER with respiratory ailment – without consulting me they hook up LEV IV. I suffered a ruptured shoulder cuff, wasting, burning veins, crippled, unable to walk, CN, PN, long list. Prior to visit – uncrippled, on no meds for anything. It’s crisis in our medical care because they refuse to report. Appalling – shameful. I shudder when I read of children being given this poisonous drug by physicians who say they don’t know – it is their responsibility to know. Do your research for any drug prior to taking – the risks far outweigh any benefit and there are many other antibiotics without these dangerous risks.

  11. ryan says:

    While I am sorry for your family members reaction, I would question the whole situation. If my children have the slightest hint of a reaction.. (and they have to certain meds) I am not only calling, but if I am not getting a response I am returning to A doctor whether it’s the prescribing physician or not.

    As far as the drugs and certain people. I started Levaquin this morning for an upper respiratory infection. NO side effects.. No problems.. And like normally happens with this drug my symptoms have rapidly subsided. I was awake all night puking out blood so this is a very desirable result. As far as my physicians- they asked if there was any allergies and advised as they always do for problems. I understand that people have reactions. Understand you’re putting a foreign chemical into your body. You do this hopefully with enough research to make an educated decision on your own. I’ve been required to take Doxycicline for a 12 month period (mandatory) then another high-powered antibiotic after it to destroy the microorganisms it caused after long-term exposure.

    My point is- many of these drugs despite their side effects are necessary for resistant viruses, persistent illness and other reasons. While it’s bad you all have been affected negatively by it, don’t let your experience hurt someone who might benefit from it. I know we are all the best physicians we know with the help of the internet.. but I think we have to put some faith in the people with years of specific medical training. I’m sorry about the situation with your sister.

  12. Ronda says:

    I too had my life and future ripped away by a fluoroquinolone – Cipro. It was given to me on Thursday, April 15, 2012. I am still in a lot of pain, still having tremors and seizures, and I experience random bouts of weakness. I was doing better after physical therapy until I ate chicken which had antibiotics in it – and the whole course started up again, I could barely move, etc. I’m looking forward to the day these nuclear drugs are ONLY used in extreme cases. I was given it for a bladder infection it turned out I never had. I’ve broken into tears because I can’t lift a small jug of milk or a stack of books without my husband’s help. Before I was floxed, I ran 5 days a week, competed in races, walked *everywhere*, hiked all the time, and considered myself to be extremely strong. Now, I’m lucky if I can walk a mile without being in excruciating pain, much less run.

    It really sucks.

    If I could have a do-over, I’d never have taken the medication. For me, it was just 6 pills that did this to me. I thought the headache was from being sick. It wasn’t until the morning I took the last pill when I couldn’t get out of bed on my own and I was in the worst pain I’ve been in during my entire life (and yes, that includes childbirth) that I realized there was something more wrong – because I *had* read the sheet. We’ve been to many many doctors…next up is neurologist. No one can find it. :-/

  13. rleer says:

    I am so very sorry your daughter has had to go through so much and at such a young age. The drug companies know very well what these drugs cause. Your doctor knows because of the Dear Doctor letters that they all should have received in June or July of 2008. The drug companies are now putting the blame back onto the doctors, so the drug manufacturer’s won’t be held liable.

    I took Levaquin off and on for the entire year of 2010. I already had fibromyalgia and now have experienced both shoulders with massive chronic tendon tears. I also think my ankles and feet are involved as I have plantar facitis and weak ankles and have a terrible time trying to walk now. I don’t know how much damage has been done, but not very many doctors want to deal with Levaquin toxitity or they will tell you it doesn’t exist!!

    I need a doctor that is honest and will check for other problems and treat them accordingly.

    I have heard that there are supplements you can take to help get rid of the toxitity, but I am not sure which ones they are wanting us to take.

    I hope that everyone who has been mamed by these medications will have a voice and be given a monetary amount for all their disabilities caused by these drugs.

  14. rleer says:

    Does anyone know that Levaquin is a chemotheraputic drug!!! It destroys telomeres, which is the protective coating at the end of your chromosomes. It has the ability to change DNA! No other antibiotics have been this strong. You may not have any signs as I didn’t have any signs until it’s too late! These are not your type of drugs your doctor would know anything about!. Want to know what can happen ask a pharmacist. Please be careful when choosing to take these drugs!

  15. Melinda says:

    My friend, Terry, who has been Floxed by more Drs. than any person I know, and lives in chronic pain but somehow finds the time to pass on information in the fight to right this wrong–she sent this to me. As I read the story, it reads the same as mine and many others. They say to not give it to under 18-it should not be given at all. This story is no different than mine which does not lessen it by any means-it is an horror story unscripted by us but scripted by Johnson and Johnson/ and Bayer..they know. I had the same hit-BAM-on the couch-curled up, screaming in pain, no lights on, no noise as even a whisper pierced through me-to this day-4+ years later-I, too, am still in pain every day. I feel for your sister so very much, as NOTHING HURTS more than a young person being hit by this drug and the ignorance of the Doctors treating her life as another number. These Drs. by most part do the same-THEY DID NOTHING TO US and then do not help us…same ole’ story. When will this horror stop. I do know some young people that did get better and I pray the same happens to this young girl as her life has just begun….

  16. james says:

    i will be waiting on other side for all these doctors.

  17. Amanda says:

    I can’t believe what I am reading…well, yes I can. I too am an angry Levaquin sufferer. On October 31, 2012, I was prescribed 750 mg for 5 days (or was it 7) by a physician at a local urgent care facility for a horrible bacterial infection in which my WBC count was over 17,000. Exactly 3 days into treatment, every joint in my body ached so badly I could barely function. Even my fingertips ached. On the 5th day (Monday), I phoned my regular physician’s office to report my entire situation (since I was not seen by him originally). The phone nursed called back, said to discontinue the Levaquin and called in Zithromax. I had already discontinued therapy and never took the zithromax bc I was at the end of treatment. After a week of no joint pain relief (it had actually worsened), I returned to the urgent care clinic as it is very difficult to see my regular doctor and the urgent care doc is who prescribed the Levaquin in the first place. He agreed that it was caused by the Levaquin and assured me that my pain would get better. They gave me 2 shots at that time: Toradol and Noroflex. This began a series of weeks and weeks of going back every week for these 2 shots and often shots of steroid/lidocaine directly into the muscle surrounding the joints in the most pain. In early December, I saw a Rheumatologist who conducted a series of tests only to conclude that I needed to fall into the “Fibromyalgia” category which I believe to be a general diagnosis when they don’t know what the heck is wrong with you. The urgent care physician was also beginning to wonder bc he felt that the symptoms (if indeed related to Levaquin) should have subsided by then. I continued to go weekly for injections at the urgent care clinic until realizing on one particular occasion in January that the nurse had just mistakenly injected me with Rocephin (anti-biotic) and steroid, typically given when one has cold of sinusitis type symptoms. I never went back! To this day, I am in severe joint pain every day of my life. I am 39 years old and have a full-time job, husband and 2 small children. I have yet to find a healthcare professional to confidently agree that it is due to the Levaquin. An otherwise healthy, active woman with no joint pain at all begins the maximum dose of Levaquin and wakes up 3 days into treatment unable to move due to the severity of her joint pain. A coincidence? I think not, what do you think? I welcome any advice anyone has to offer!

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  19. james says:

    everytime I think this poison is going to let me go, it comes roaring back just as bad. I used to think that doctors knew what they were doing. now I know they are IDIOTS. NEVER WILL I TRUST ANOTHER DOCTOR. how can any doctor prescribe something this terribe without checking on these drug side effects. all they want is the money and run you through in 5 minutes and get to the next victim. the F.D.A. is on the pockets of BIG PHARMA and we have no protection at all.

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