Sequence of Events, Symptoms and MRI results
And, then I took a pill and my
life changed, forever.
On December 17, 2009, after a 3 month bout with an upper respiratory problem--a "cold" that just would not go away, I was given a prescription for Levaquin (750 mg tablets) which I took for seven days, once a day, as directed.
Levaquin or its generic, Levofloxacin, is an antibiotic belonging to the class of Fluoroquinolones (FQs) or as they are commonly referred to, "quins" and "floxins".
Towards the 7th day and for a week or two thereafter, I found myself rubbing my right forearm which became increasingly sore to the touch. It became so sore, that I could not use it to help grasp, squeeze or even lift a light object, like a cup, without causing pain and swelling in the forearm and elbow.
This was disconcerting as I am right handed and needed to use that hand for typing and just about everything else. My neighbor thought that I might have carpal tunnel syndrome and suggested that I see her orthopedic surgeon.
And, that began a series of many doctor visits (24 so far) and many incidences of humiliation and disgraceful treatment by physicians who looked down on me from their mental thrones, as my symptoms spread and became unbearable, and as my husband and I searched for answers.
During the course of seeking help from the Orthopedic Community, I was given Physical Therapy for undiagnosed tennis elbow including a contraption that released cortisone along with electrical impulses into the affected area. Additionally, the Physical Therapist noticed that my neck muscles seemed very stiff and he suggested some gentle exercises.
After my third PT session, I began to feel electrical sparks in my right forearm, where the "contraption" had released cortisone, severe pain and spasms in my neck and left shoulder, and muscle cramping and neck stiffness. The Therapist asked me to merely try to touch my head to my shoulders. My head could not tilt in either direction more than 1/2 inch. Scary and painful!
Instead of making me feel better, the Physical Therapy absolutely intensified my pain. Both the Therapist and I agreed that this pain was unusual and that I should cease therapy.
More visits with different doctors were arranged. What WAS this that had come on so acutely?
I was given anti-inflammatory medication and muscle relaxers: Toradol, Skelaxin, Motrin (600 mg) and Mobic. Nothing I took had helped. In fact, it made things worse. (I had begun to read that anti- inflammatory medication or N-SAIDS (non-steroidal anti-inflammatory drugs) cause more pain and ill- effects for Fluoroquinolone Victims, and that corticosteroids and cortisone are to be absolutely avoided.) And, although I told my doctors what I had started to read, about N-SAIDs and Cortisone and how they affected Fluoroquinolones, they did not believe me.
In addition to the pain described above, I began to feel severe burning on both the right and left shoulders as if acid had been poured on me, going about midway down both arms and in a horizontal line across the back of my neck. The burning went down into the muscles of my back and sometimes into the veins on either side of my neck. When the neck veins were burning, they became pronounced and very obvious. I was on fire and my sensation was that I was being burned alive!
At this point, I was also experiencing: stinging, aching, soreness, and arm trembling when I stood with my arms hanging down. Why were my arms trembling? I used to be athletic--captain of Intramural Sports in High School, played basket-ball in College, could throw a baseball farther than most guys. Why was I now experiencing numbness and tingling in my arms and certain fingers plus shoulder cramping and spasms ... just by standing in one position?
I couldn't even stand erect for more than a few minutes without my lower back and hips aching and stinging. My balance was definitely OFF. What was happening to my athletically inclined self was now terrifying!
Worse, it felt like I was shaking inside my entire body, especially upon falling to sleep or awakening. As I later found out, these were "Myoclonic Jerks" or little seizures. Many times, I felt my body "jack- knife" and on two occasions, I actually flipped out of bed. Try dozing off into a peaceful sleep with your body seizing. It doesn't work. I never slept for more than an hour or two for four to six months.
I began to break out into drenching sweats during the day or night --even if I had ice-packs covering my entire upper body. My husband decided that I need to "get away". A little vacation would do me good. We went to visit friends who had a condo at the beach. I took my ice packs and health related gear with me. I was in so much pain and distress that I ruined the vacation for everyone, and after 1 or 2 days of soaking through my clothes, their furniture and bed sheets (while packed in ice), I begged to go home, my body burning and trembling all the way back.
It soon became very difficult to hold my head upright without causing pain and muscle cramping. My sensation was that my head was too heavy for my neck and shoulders. I could not bend my head forward or backward without causing intense pain and this motion sometimes caused burning in the shoulders, as well--more "acid and being torched alive" sensations.
I felt that my posture had changed and that my head was more forward now, exposing a bump at the base of the neck that I did not have before.
My eye-sight became worse and blurred. I became extremely light sensitive and wanted to close my eyes--all of the time. Even now, almost two years later, I wear sun-glasses indoors, wherever I have to go.
With all of the horrendous pain,
frightening and bizarre symptoms, at this point, not one doctor believed me nor agreed to
give me any medication for real pain relief. I was in agony 24 hours a day, enclosed in a cocoon
of horrible pain and emotional distress, and it was all I could do to not scream or
freak-out. Around the second week of May, 5 months after my seventh Levaquin pill (the
final dose), I began to hear something in my left ear that sounded like the crackling of
cellophane or tissue paper-wrap. I actually thought I was going insane, but the
"research" part of my training in
All of my sensations were off and on--mostly on. In general, the pain and burning were so unbearable that I wanted to rip my skin off and jump. It was as if someone had poured gasoline all over my upper body and then lit it with a match. I remember one evening, running around my house in circles, screaming and trying to pull at my burning flesh.
I had heard of a physician in a nearby state who was suffering from a stroke, and somehow I instinctively knew that if any doctor would understand the frustration and terror I was going through, he would. I found him just in time and after he reviewed my records and we met, he put me on the medication I needed to at least "quiet" my symptoms.
To digress, prior to my starting Physical Therapy in April, my husband and I heard a medical report on TV about "Floxins" as well as commercials about Fluoroquinolones. We began to research "Levaquin"--the Fluoroquinolone drug I had been given-- on the Internet as well as speaking with an FDA Patient Rep, consulting with a medical expert, and several legal professionals. As my symptoms matched the majority of those tied to Levaquin (including the strange feeling that my shoulders had been hacked open with a hatchet), I had MRls taken of my cervical spine, both shoulders, right forearm and right knee.
As suspected, I have a full thickness rupture of the rotator cuff in my left shoulder (Type 11 Acromiun), a partial thickness rupture with tendinosis in the rotator cuff of my right shoulder, tendinosis of the biceps, something suspicious around my right elbow that warrants another MRI, and a recent MRI of the right knee, showing tendinosis, edema and fluid leaking inside that area. (Fluroquinolone Tendinosis never heals and should not be confused with tendonitis.)
Shoulder Ultrasounds, taken at a later date, reveal many tiny slits/tears in and around both shoulders. There is reason to suspect that I also have these tiny ruptures in my biceps and around the knees. Think of the pain of being slit open in a zillion places!
Even with all of this documentation from the MRIs and Ultrasounds plus documentation from the FDA itself, confirming that my symptoms were caused by Levaquin, out of the 10 to 14 different physicians that I visited and to whom I provided this professional documentation plus further data, only two believed me, other than the doctor who saved my life and calmed my symptoms
One is my Gynecologist who has known me for over twenty years and the other is an Orthopedic Specialist. The Orthopedic Specialist actually contacted an Anesthesiologist on my behalf who was crippled by Levaquin. After that consult, the Orthopedic Specialist admitted that he would be "very reluctant to prescribe Levaquin".
The pain, burning and stinging moved into my thighs, knees and legs, while staying on my shoulders, neck, back and arms, as well. The medication I am on reduces this pain so that it is generally bearable. However, I know enough to know that I will habituate to these meds, and then what?
One of the concerns I have regards surgery for my rotator cuff tendon ruptures--the large ruptures, not the tiny tears. I am told by those-in-the-know that it would be risky for me at my age with Diabetes, connective tissue problems, a now weakened immune system and neuro-toxicity throughout my body to have surgery. I may not wake up from the anesthesia. Additionally, I've been told that my FQ ruptured tendons are unlike normal, smooth tendons. They are now like rope, growing in all directions and cannot be operated on.
Therefore, I must live in constant pain and disability with braces/stabilization units on my arms and shoulders (most of the time), a Cervical Collar around my neck (most of the time), and wait for the Fluoroquinolone (FQ) to attack my legs (which it has already, to some extent) and my organs. I know that at any moment my knees could "burst", as well as my fascia and heels. I try not to think about this-what will happen next--but it IS anxiety producing, especially when a new symptom starts.
Several months after the onset of my acute symptoms, I began to experience pain in my urethra and genital area. Without going into detail, I have had eight continuous urinary tract infections-one after the other-which are becoming resistant to the antibiotics I have been prescribed. I have not had a moment of peace in that area of my body. These painful, stabbing and persistent UTls can be found in the information on Levaquin. Am I stuck with UTls that will never clear up because they are antibiotic resistant?
My Gynecologist sent me to an Infectious Disease doctor. Want to know what her "cure" was? IV's of Levaquin! Even she had no knowledge of the side effects of that drug nor any Fluoroquinolones. Why is this, I constantly ask myself? The information was supposedly sent to physicians who prescribe these meds to read, understand and sign-off on--prior to prescribing. Do physicians not read? Do they not care? What does "First, do no harm" mean? The subject of Fluoroquinolone Toxicity has been on PBS, other TV Stations, Newspapers, and all over the Internet.
Since December of 2009, I have been on a horrible downhill journey with very few "experts" to turn to. I had relied mostly on my relationship with those few experts who are now inundated with calls from "new" victims, a group of very savvy FQ victims who have suffered longer than I and with whom I network, new friends whose relatives have suffered or died from this toxicity and my own professional research skills of digging for information, but separating fact from fiction.
Some of the information about Fluoroquinolones/Floxins can be found on FDA.gov. Once at the FDA website, put Levaquin into the Search Box. Not only will you see the Black Box Warning about Tendon Ruptures and Tendinitis (which should be "tendinosis"), but you will find pages upon pages of listed symptoms and risks--none of which my prescribing physician paid any attention to, or I would not be "stuck" in this debilitating condition.
But, let me point out some facts:
· Levaquin and Cipro and many other "quinolone or floxin" antibiotics are "neurotoxins". As such, they should be used ONLY as a last resort and in life-threatening situations .... rather than being handed out like candy, as they are now.
· They alter the DNA. Once taken, an individual is never the same.
· A serious symptom can begin after taking just one pill or at any time after taking the first pill or dose. Some symptoms begin at once; other symptoms can begin several months or years, later.
· The more Quinolones that a person has taken in the past, the more one is likely to develop FQ Toxicity. However, one can develop FQ Toxicity, never having taken any in the past, but being given a FQ for the very fist time.
These drugs are so dangerous that many of them have
been taken off the market in
· Everyone's experience with Fluoroquinolones is different. Some have as their only symptom a ruptured Achilles Tendon, while others are "floxed" much harder and end up in wheel-chairs from tendon issues or have Stevens Johnson Syndrome (a condition in which the skin "burns and bubbles" and falls away from the organs, exposing them) or Central Nervous System disturbance or severe Neuropathy .... or all of the above and more.
The most serious case of CNS disturbance and brain injury that I know of is a "floxed" friend, who feels his head vibrating, continuously, and who is given medicine that allows him to sleep almost 24 hours a day. That is the only way that this former programmer for a Fortune 500 Company can now exist. Is this a life?
· Anti-inflammatory drugs and corticosteroids are generally contraindicated to be used with FQs, as are foods that may contain antibiotics, hormones and fluoridated water. I have to shop at special stores, where the food is much more expensive. Seems like almost everybody else in this sinking boat does the same.
· The neurotoxin may take 7 or 8 years more to leave my system, but I will have to live with the damage it did.
One year after the first pill, I began to "cycle", with old symptoms recurring and new ones appearing: (complete numbness/tingling in both arms with extreme weakness, itchy rashes on my body, headaches, dyslexia, slurred speech, "brain fog", stomach problems, Achilles pain, blurred vision, etc.). I have continuous Yeast Infections from the antibiotics given to me for my UTls, and am on my 8th UTI. As stated earlier, my UTls are continuous and now resistant to every antibiotic.
I cannot comfortably wear clothing because of the very painful UTls, and so I spend most of my days wrapped in a terry-towel and running to the bathroom, only going out for necessary appointments or an occasional meal, where I can get something that has no antibiotics or hormones in it.
Most of those who have been "floxed" by Levaquin or Cipro or another FQ and who are called "floxies" (terms of endearment?) are in tremendous physical, emotional and mental distress with literally nowhere to turn, except to those who have "gone before". Of the few physicians who have either been floxed themselves or have studied the Adverse Drug Reactions (ADRs) of Fluoroquinolones, one has likely been "made an offer that he couldn't refuse" by a Pharmaceutical Company to no longer speak to anyone about this, another who is an Anesthesiologist crippled by Levaquin has been ostracized by his own colleagues and is now overwhelmed and reluctant to discuss the subject, and a third charges quite a bit of money for telephone consultations, which are naturally not covered by insurance.
· No two FQ Victims are alike in the way they have been floxed or to the degree of damage. While one may have an Achilles Tendon Rupture (easy enough to fix--right?), another may have seizures or severe CNS disturbance with no short term memory, inability to complete sentences or a vibrating head.
· It is also suspected that people who have Chronic Fatigue or Fibromyalgia have taken a "floxin" or fluoroquinolone in the past.
· My own personal suspicion, based on data I've gathered, is that persons who have been diagnosed with Tri-Geminal Neuralgia and A-typical Facial Pain have taken a Fluoroquinolone prior to their onset, especially if dental work (root canal) is involved.
· The FDA was finally forced by Public Citizen to put a Black Box Warning that spoke to Tendon problems on Levaquin and Cipro information, but most doctors and pharmacists do not pay attention to it.
It is estimated that there are hundreds of thousands
of FQ Victims in the
More importantly, every FQ Victim
should have been given "informed consent" by
his/her prescribing physician. Had I known that there were strong cautions against taking Levaquin:
that I would be at high risk for:
that I would have to wear braces and a cervical collar and endure:
I would not have taken this pill. Neither would hundreds of thousands of others who are now crippled, in wheel chairs and cannot work or function in the life they once knew.
But, my doctor didn't warn me, even when I asked point blank if this medicine was OK to take considering my diabetes. He just said, "No problem". Why didn't he look it up on his computer that was 3 feet away from him? First, do no harm??
Because of his laziness, negligence or "know it all" attitude, my life (as I knew it, including happy future plans) has been ruined. The simple, attainable dreams of a hard working couple, married for over 30 years, will remain as "just dreams". The daily support of my brother who is Mentally Retarded and Autistic and my constant but necessary intervention to make sure that he is healthy and well cared for will likely diminish as my symptoms get worse. What do I tell someone who doesn't understand the world around him-"You're on your own, now? Don't count on me-- I'm too sick to help? There will be no more fun vacations or visits--I can't leave the house too often because I'm wrapped in a terry-towel"?
When I think about what is to come, I cry---not for myself. I cry not only for my husband and brother, but also because this was completely avoidable.
Please take what I have written seriously. YOU or a loved one may have taken Levaquin or Cipro or any drugs in the Fluoroquinolone family already.' Now that you know some of the facts, you should also understand that Fluoroquinolones are neurotoxins and should be used only in life and death situations or as a last line of defense against very serious illness.
As with any medication, if you are prescribed one that you are not familiar with, ASK the prescribing physician what the risks are, taking into account your own situation: your age, contraindications with your other prescription or over-the-counter drugs, your current or on-going specific health problems, if there is a Black Box Warning or any kind of warning on this new med, and more. GET INFORMED CONSENT. You do not have to take whatever a physician prescribes.
My closest friends and neighbors have now refused to take FQs from their prescribing physicians, and have asked for a different kind of antibiotic. One of my best friends who was keenly aware of my FQ situation--a past college room-mate--went to her physician because her new puppy had given her quite a nasty bite in the leg while playing. My friend's physician wrote out a prescription for Levaquin. (Of course he did-Levaquin and Cipro are given out like candy!)
My friend instinctively "lunged" at him and tore up the prescription. She later handed him some of my provided documentation, which she had tucked away in her purse. He was completely unaware of the dangers of this drug (Hmmmmm-why is that???), but because he had known my room-mate well enough to respect her opinion, he asked her for more information on Fluoroquinolones and wrote her a different prescription. One life saved!
Always remember that patients have rights. Physicians do not know everything. You must advocate for yourself in any medical situation.
So, what now?
Our goals are now to bring this horrendously debilitating toxicity out of the closet and into the publics' eye via the Media, Internet, or by whatever means, and to force the FDA to put another Black Box Warning on Levaquin and Cipro, stating that these drugs also cause irreversible CNS disturbance and Neuropathy. It has been documented by MedWatch (the FDA's own adverse drug reaction reporting system) that CNS disturbance and Neuropathy account for 3 to 4 times as many Adverse Drug Reactions (ADRs) than do Tendon Ruptures and Tendonitis. (Tendonitis is tendon inflammation. Inflammation can be controlled. However, Tendinosis (what we Floxies" have) is a non-curable and chronic tendinopathy.
The FDA and Big Pharma need to change their verbiage, drug assessment and marketing techniques to reflect what is really going on--what the real facts are. The Pharmaceutical companies need to stop creating an atmosphere in which their Drug Reps feel they are forced to give out disingenuous drug information and gifts (bribes) to physicians for pushing specific meds. Physicians must read up and keep current on what they are prescribing and honestly discuss the hazards and benefits with each patient, according to the patient's particular medical profile and need--instead of pushing a drug because they received a $1,000.00 check and wagon-load of samples to do so. Pharmacists should seriously caution every patient on potentially harmful drugs prior to dispensing them, rather than having the patient, who is sick, check off a device that says: do you want counseling?
In other words - honesty, not greed, has to prevail. Lives are at stake!
Of course, the major goal is to find a treatment or cure.
In order to find a treatment or cure, research must be done. It is not easy to find a Researcher willing to plow into unknown territory. Research will likely take a very long time. Funds will be needed every step of the way in this long and difficult journey.
There are a number of ways in which you can help, any of which would be greatly appreciated.
In the meantime, please pass on information about FQ Toxicity. Tell your doctors, friends, neighbors and relatives about the risks involved. There are always alternatives to these neurotoxins. Remember: Fluoroquinolone antibiotics should only be used as a last resort, in life and death situations.
See article in the Medical Examiner, March 15, 2012.