David’s Story – 15 Years of Being Floxed

David FQ Toxicity

I have also experienced devastating effects from taking Ciproxin. I was prescribed this drug for a suspected prostatitis in November 2000 .

I had a full health check before taking this drug and was in good health, in full time employment and taking regular exercise on a daily basis. I was 30 years old.

I was told I would need to take this drug long term 6 weeks at 2 x 500mg and 13 weeks at 1 x 500mg. The consultant also told me to take ibuprofen but I was unable to tolerate this painkiller as well as cipro.

Ciproxin did not help with my water works problem but it has left me with a number of other complaints. I have listed a few below

  • Peripheral Neuropathy – Moderately severe
  • Ulcerative colitis – with marked inflammation
  • Erosive Duodenitis with ulceration
  • Hiatus hernia
  • Thyroid problems
  • Joint pain
  • Ruptured Tendons
  • Ringing in the ears
  • Jauendice
  • Oedema
  • Panic Attacks
  • Eye/vision disturbances
  • Headaches
  • Fluctuating blood-sugar levels

I lost quite a lot of weight. My co ordination and concentration was very poor I stumbled on a daily basis and was only able to leave the house in a wheelchair.
My life was devastated and had become so restricted due to the side effects.

I had to stop work as I became so ill and wheelchair bound I was unable to look after my self at this point my partner was having to take care of me.

Although my symptoms started whilst taking ciproxin The Sheffield National Health Service turn a blind eye to this and told me cipro was a safe antibiotic.

The last 15 years have been very difficult my relationship broke down because of the severe impact these side effects was having on my quality of life I was unable to go on holidays or out for a meal.

I have tried to stay strong and with determination I managed to get out of the wheelchair and on to crutches and in 2010 I was able to walk short distances independently.

My diet is to eat plain bland food like boiled potatoes, carrots, cauliflower and poached cod. I take a liquid multivitamin as this is easy for me to digest.

My recovery started when I was referred to see a rheumatologists. I was tested for autoimmune diseases as my condition indicated that I could be suffering from one of these. All test came back clear but showed a number of vitamin deficiencies I was commenced on b12 injections and started to take a liquid multivitamin. Nerve conduction studies showed a Moderately severe nerve damage and a bone scan showed osteoporosis further blood test ruled out pernicious anaemia and there was no metabolic bone disorders causing the osteoporosis.

 

Rhonda’s Story

Sick button

My story kind of starts with the clear fluid coming out of my right ear. After doing some research and three years of being treated with various antibiotics, which included suctioning the fluid out, I asked the ENT if it could be CSF, Cerebral Spinal Fluid. To which he had the audacity to say, but you’ve never had a head trauma. Well… It seems a spontaneous CSF leak is also a diagnosis. Iv’e since found out that other “Floxed” people have had a similar leak out the ear, which the odds are pretty rare for this particular leak. A Myelogram of sorts found the leak, but doctors in my city tried to cure the leak with yet another drug Diamox (Acetazolamide) that I was severely allergic to. The hole was about the size of a nickel! Feel it, if it feels like satin, it probably is CSF. Put some on a handkerchief, it halos, it’s CSF. That easy! They told me the hole was due to the Tympani bone being too thin and over the years with ear infections and such it probably just eroded away and my brain fell through the hole. They removed that small nickel-quarter size piece of brain matter and biopsied it (just dead brain matter). An Otolaryngologist at U of – Ann Arbor, MI, along with a Neurosurgeon were able to repair it by Craniotomy in 2001. It took them over seven hours to do so. I also received major doses of antibiotics, so strong that it blew all my veins in my arms. I looks like a freak show. At a follow-up visit, when I mentioned the repetitive ear infections being the cause, the Dr. denied making that statement. I’m now thinking that the original plugged ear feeling I had was after a few courses of antibiotics for ear/sinus infections and maybe due to “brain-swelling” as other Floxies have found out. I’ll never know the truth. I have been given so many antibiotics throughout the years, including Levaquin for double pneumonia and again for the onset of pneumonia in just the last 10 years, as well. I am female and only 52 yrs old. I was diagnosed with Diabetes and High Blood pressure in the same visit at around 45. I’ve had to make my primary physician check my blood to see why I didn’t feel well all the damn time to ultimately find out I had. CLL/SLL Cancer, though I’ve been in remission for two years now as of April (this is a Cancer that 70 year old Eastern-Euro men usually get!), none of which applies to me. I now have Myocitis (leaking muscles), they want me to have a muscle biopsy to grade it, so then they can prescribe me more steroids. No thank you, I have had Prednisone and hate-hate it. Then there’s the Fasciculations under the skin of my calves just resting, as well as cramping leg spasms during the day and night. Spasms even come into dreams and I’ve actually dreamed I’d been shot twice recently and awoke to a severe spasms. So apparently I liken it to being shot at the onset of these cramps, also the spasms twist my feet to abnormal angles. I have two newer hips, after having bone grafts at age 12 on both and Osteo-Arthritis having set in. Then there’s the possible Neuropathy in my left big and second toes and lighter in on right side. This transpired after spinal disc surgery on lower five discs to relieve severe Sciatica L1-S1. I did all the PT faithfully, to only re-herniate at least one disc only 12 weeks later. I didn’t do anything to re-herniate it, but the pain management Dr. says there’s also a lot of scar tissue in the Sacral region now. Just got Tranforaminal Injections again for another bout of severe pain from Sciatica last week, and one two weeks prior. They work, but it comes back about every two years for me. Gout came after injuring my toe this summer, on the dog lead as she ran out the door. Dr. says I have to take the Allipurinol all the time now to keep my Uric Acid down. What?? Now, beginning Glaucoma (just found this out last month), after experiencing blurring with kaleidoscope like visions blockages. I just got injected with iron today on account of my Hemoglobin being low and I had to have them check it on account of my new habit of wanting to chew ice all the time. Never have before. Sure enough Hemoglobin was low. I go for the other half next week. I feel like I’m 80 and that’s every damn day! I want to slap my doctor when he even mentions my weight, which has ballooned due to the ailments to stabilize @288 lbs, though I’ve taken off 30+ lbs and kept them off, he wants more. So he put me on a drug called Jardiance that’s supposed to work to remove sugars in my body and aid in weight loss. My body rebelled and gained almost 10 lbs, I was always hungry on it. Took myself back off and I’ve lost five of them again in three weeks since. Their damn drugs are a joke. I’m just happy to get out of bed in the A.M. and move throughout the day.

Levaquin, Avelox and Steroids – How They Changed My Life

Pic - Chris

My story began in 2001, with the incident that would set in motion a series of events.

In 2001, my brothers contacted me to help move my mother from a roach infested home she was living in at the time. We went down, cleaned everything and moved my mother into assisted living facility. Little did I know that single act to make life better for my mother, would lead to 14 years of hell for me. Shortly after that incident, I started to lose my voice on a regular basis, pretty tough when you are a corporate recruiter. I was diagnosed with a severe sinus infection. I later learned through testing, I’m allergic to cockroach poop and every mold known to mankind.

I was referred to an ENT because the sinus infections would not stop. She put me on Levaquin, prior to finally deciding on surgery in March 2001. That’s when things started to go downhill, at first; I would experience tendeniopathy, severe pain in my shoulders and elbows. Went to an orthopedic surgeon, ran tests, an x-ray found a bone spur in my right shoulder. Most likely from an injury I sustained while in the army. They called is bursitis. The ENT finally gave up on the antibiotics and did surgery on my sinus. She repaired a blocked nasal passage which was making the situation worse.

I did horribly with that surgery. Following the surgery, she put me on Levaquin with prednisone 6 times in 2002. That resulted in the first of seven tendon tears with the first being my left elbow. In the following years, I would be prescribed Levaquin and Avelox by the ENT, and the doctors at a former Family Practice in Belton, MO. I went through a lot of changes to address the sinus problems and get them under control. Had the vents in my house cleaned. Searched out every place mold could grow. But it did no good. I still had sinus issues.

I have always trusted my doctors and I trusted the pharmaceutical companies, I never questioned any of the actions they took or the pills I was taking. After all, it couldn’t happen to me. For me, a side effect was the hives or other minor reaction. I never in my imagination thought an antibiotic was responsible for my tendon tears, IBS, now Ulcerative Colitis and so much more than to mention here. 2011 would be the last year I was given Avelox and Levaquin by my ENT and the latter by a family doctor.

It was “blind faith” that became my downfall. I’m not certain when I was first floxed. I suspect it was in the late 90’s while on active duty. I suspect it was these drugs that caused me to tear the meniscus in my right knee in 1999. In 2001 I retired from the military because I could no longer run and had constant problems with my shoulders, back, and other tendons. I just couldn’t keep up with the demands of the military at the age of 39.

In 2003, I was prescribed Levaquin by my PCP and again, I reacted with severe lower back and sciatica pain that required many visits to a therapist to bring under control. There were times when I could barely walk. And these symptoms weren’t the only ones. I suffered insomnia, anxiety attacks and developed IBS.

In 2004 I was prescribed Levaquin for an infection and this time it would result in the first tear to my right rotator cuff. I suffered this tear doing simple lifting at home. I learned that fall; I would have to have surgery to repair the tear. It took 8 months for me to get use of my arm back.

I would be given Avelox in 2005 and suffer damage to the ulnar nerve in my left hand that required surgery. The surgery did not correct the problem. Even as I type this, there is pain in my left hand; I often wake up with it numb. On one occasion, I woke one morning and could not move my hand, I panicked, manually began to move my hand and it started working again. That only happened once, but it scared me. I went through several tests with a neurologist to see if there was another problem after the hand surgery. She could not find anything wrong with the nerves from my spine to my hand – nothing. Little did I know it was the drugs that were causing shooting pains and numbness in my hands and feet. Like all the other doctors before her, she never looked at my prescription history to see if something I had taken was causing the problem.

In 2006 through the end of 2008 would prove to be good years in which many of the problems except the IBS disappeared. In December 2008, I was prescribed Levaquin again and this would result in a tears to my left rotator cuff several months later. It also resulted in a second tear to my right rotator cuff.

In 2011, 30 days prior to my 2nd right rotator cuff surgery, I developed another sinus infection. I was prescribed Levaquin and two weeks after the surgery, I was prescribed Avelox with Prednisone (simultaneously) by the same ENT that had performed sinus surgery almost 10 years earlier. In the fall of 2011, I tore my right rotator cuff for a third time, picking up a bag of groceries. The surgeon informed me after that surgery, that it could not withstand anymore repairs – if it tears again, it will most likely result in joint replacement.

In the fall of 2011 I received a letter from attorneys representing Humana. They were suing Johnson and Johnson for the money they had to spend on my surgeries. The letter also told me if I were to sue, I would owe Humana. The fear of being sued by Humana, whom, obviously knew the drugs were causing tears, kept me from holding the doctors and J&J accountable. In the legal field, this is known as the “chilling effect.” Like many, I just didn’t have the money to find justice. So I let it go to work on awareness.

But the damage didn’t end in 2011. About the time I received that letter, I was at work, pivoted on my right foot to talk with a coworker, and felt a sharp pain in my hip. I would later learn this was one of two tears to my right hip labrum.

In May 2015, I had to have hip replacement surgery. This too can be directly connected to Levaquin and Avelox. In 2011, via Ulcerative Colitis. In June 2012, I suffered a severe colitis flare up that resulted in me being put in the hospital and the prescribed a lot of prednisone. I suffered a lot of pain in my right hip. In 2014, I gave up on my current surgeons and sought out a hip specialist, little did I know that there were changes taking place inside my hip. I didn’t know that steroids would do the damage I suffered.

By then I was smart enough to look at the side effects of drugs, and found prednisone and other steroids can cause a condition called Avascular Necrosis. Three surgeons denied a problem despite a statement in the hip MRI regarding an “abnormal signal” coming from inside my femur. It took a little over two years for the head of my femur to collapse, which could only be repaired with hip replacement. All because of Levaquin and Avelox and the steroids they prescribed with them. Today, after my change to organics, I now have the colitis in check. Haven’t had any severe incidents since 2013.

Like many floxies, I live with daily pain – something hurts. I have made many changes to include changing to an organic diet rich in plant based foods. I do my best to stay away from processed foods and meats with antibiotics. I took control from the doctors on prescriptions, and I question everything. This change has made all the difference. I have not taken a plethora of supplements, my food has it all.

I have a very difficult time trusting doctors. I do my best to work with my doctors and communicate with them. I inform them that I am the poster child for why antibiotics should not be overprescribed. One doctor, wanted to prescribe Cipro, I asked him what his estate is worth? He changed the prescription.

Many of the doctors denied the drugs did the damage. Not a single one of them looked at my prescription history, and none of them acknowledge the dangers of FQ’s. I will never trust the pharmaceutical companies ever again; it’s painfully obvious they put profits before people. I ask everyone that reads this story to please, Please, research those prescriptions before you fill them. You could be filling a prescription that has the potential to kill you. Please. Spread the word.

The FDA no longer protects us. Congress couldn’t care less. To all of them we are a meaningless statistic. Change needs to take place. You don’t have to wait for congress; you can make those changes and get better on your own. Find what works best for you. There is no magic pill for what happened to us. Only time, patience, and eating healthy have made a difference. I’ll never be back to 100%, but at least I have hope that eventually it could get better.

Fluoroquinolone Toxicity Video

Chris Jones made this WONDERFUL video –

He posted it with the following instructions:

Over the last year there have been many news stories about fluoroquinolones. I made a video to highlight these stories. I am asking you all to please help me do a few things.

1. Watch it many times to get the view count up.

2. Like the video.

3. Leave a comment on it in YouTube. ( the news stories comments helped a lot, but once the story is gone it is a lot harder for new people to see them). These comments will help people who get floxed years from now.

4. Share as many time as possible.

After the comments and views are high. I will be emailing it to major news stations, talk shows, politicians, the FDA, and I recommend you send it to the doctor who rx you this poison.

Thank you everyone who had the courage to do a news story. I know how hard it was. And thank you to everyone behind the scenes who put them together.

Sierra’s Story – Cipro Poisoning

Pic - Sierra -

This is my story of fluoroquinolone toxicity:

In July 2014, I was prescribed a ten day course Cipro for a urinary tract infection. I didn’t think much of it since I had taken this class of drugs in the past with no reaction. This time was different than before as I experienced a serious adverse reaction. I took Cipro for 7.5 days, and then discontinued taking the medication since my symptoms were becoming progressively worse.

The pain in my legs was so bad, I could barely walk. It was a pain that is hard to describe, but it felt like I was very stiff, and the pain was spreading. The stiffness in my legs turned to numbness, and my legs would tingle when touched. I felt like my legs were dying. I also had headaches, nausea, dizziness, sensitivity to light and pain in both Achilles. The doctors dismissed my issues and I was released and sent home with my parents. For the next 48 days I wasn’t sure if I was going to live. Within the first 24 hrs of leaving the hospital the numbness and tingling I felt begin to spread up to my legs to my hips, and then to my back and eventually spreading over my entire body. I experienced excruciating body-wide tendonitis and nerve pain – in my toes, feet, ankles, shooting up calves, lower back, ears, wrists, elbows, and hands. Everything felt like it was ripping and pulling. My entire body was swollen and stiff; my toes were so swollen that they curved downwards and would not return to a resting position. I was in severe pain, more pain than I could imagine was possible. Just to sit up in bed was difficult and agonizing. I was so weak I couldn’t lift a normal cup without feeling a strain on my wrist. On top of the pain I was dizzy, nauseated, light headed, feverish, and could feel every beat of my racing heart. I had burning sensations that felt as if a baseball on fire had landed on my legs, random twitching, extreme sensitivity to light (my family had to black out my windows), new floaters in my eyes, my ears were constantly ringing, my body would crack whenever I moved, and other symptoms. I lay in bed and cried as my body was unbearable to live in. I wasn’t even sure that I could make it. The only minimal relief I would get was when my family would lightly rub my body where I was hurting or just hold the area. My whole body was wrapped in ace bandages.

During these initial few months, my family and I did everything possible to detox my body. I went on an all organic diet and only ate food that decreased inflammation. I would also do contrast bathing, which was recommended by a podiatrist, to increase the blood flow in my tendons and ligaments.

In September 2014, two months after my ordeal began; the pain finally began to decrease. However, I would still experience random pains daily, including constant Achilles stiffness, and intractable exhaustion that made life difficult. The pain decreased enough that I thought I was going to be ok. I could live with the pain I was in.

For a few weeks I was actually able to see my friends, go to the store, and get a job. I was in the middle of a career transition when I got sick, and I had just received my Real Estate License. After starting my new job I had a relapse and went backwards. The pain increased and the fatigue became debilitating.

What I experienced is not normal fatigue. My fatigue feels like the energy is sucked right out of my body. I didn’t even know what fatigue was until this happened. I couldn’t even take a shower and blow-dry my hair without taking a nap in between. The daily low grade fevers, nausea, dizziness, exhaustion, weakness, and pains have left me totally disabled. I have not had a normal life for the past year. My mother has to be my full-time care taker. I am unable to cook for myself, go grocery shopping, drive to the doctors, do laundry, clean the house, or any normal activities. I used to love going to dinner with my friends, shopping, walking and hiking outdoors, working out, boating with my family; but Cipro has left me housebound. Without a full-time care-taker I would not be able to survive since I am unable to do the necessities to survive on my own.

My life consists of going to doctors, and trying to find something that will make me feel better. The Mayo Clinic diagnosed me with Chronic Fatigue Syndrome (recently renamed to Systematic Exertion Intolerance Disease), Fibromyalgia and Central Sensitization Syndrome. The Mayo Clinic had nothing that could assist me, and they suggested that I look into alternative medical treatments. I have tried all alternative medicine to get better including: acupuncture, infrared saunas, hyperbaric oxygen chambers, energy healing, neural therapy, electromagnetic beds, essential oils, a plethora of vitamins, and IV therapy including IV vitamins, IV ozone, IV H2O2. I have spent thousands of dollars with the hope of recovering from Cipro toxicity, but have not seen much relief at this point. The only items that I have noticed help my symptoms are IV therapies. All I can do is warn everyone I know about the dangers of Fluoroquinolone Antibiotics. Please do not take these drugs unless it is a last resort. Inform yourself, read the side effects, and ask for safer medications.

Robin’s Story – Cipro Poisoning

Robin FQWall

Hi there – 3 years ago I was put on Cipro for a UTI. I was also put on Levaquin & Bactrim for months. I had a hysterectomy & they had me on IV Cipro for a week. I was an active working mom of two, one with special needs. Now I am beat up from 3 years of tests, procedures, doctor appts, acupuncture, chiropractic. craniosacral therapy, nerve blocks, injections, meds. PT. surgeries & daily relentless chronic pain. Diagnosed with pudendal neuralgia, interstitial cystitis, sacroiliitis, vestibulitis & more. I reversed the severe fibromyalgia by following the Paleo Autoimmune Protocol. My diabetes also went away. Now I am told I must go on a low oxalate diet. I am taking magnesium, CoQ10 & nascent iodine, and probiotics. I am always overwhelmed but I fight on for my family. They need me. Thanks for listening

J’s Story – Dear Mr. M.D…..

confused doctor

Pic from a google image search, not the actual doctor mentioned

Mr. MD,
I am addressing this letter to make you aware of the physical and mental nightmare I have been enduring on a daily basis since you prescribed me Levaquin (levofloxacin) for a simple urinary tract infection. The adverse drug reactions that I am suffering are sometimes so painful that crying has become natural. The joint pains throughout my body, constant headaches, and peripheral neuropathy (pins and needles, burning, electrical shocks) on my legs and arms, are sometimes unbearable.

What I find disturbing is the fact that on the follow up medical visit, you pretended to be surprised that I was experiencing these horrific side effects, and actually started to make excuses by alleging that I was suffering from rheumatic arthritis, and immediately tried to pawn me off to all kinds of other doctors. You also recommended for me to take NSAIDs, which later I found out is a big NO NO when someone has being exposed to fluoroquinolones.

On the second medical follow up appointment, when I confronted you with FDA documentation on Levaquin side effects, all you could do was scratch your head and continuously respond “I don’t know” to the questions I was asking in reference to my current physical disaster.

Another disturbing fact is that your office called me after the second follow up visit to tell me that I needed to go back, because you had forgotten to examine my joints. On the following week at your office, the entire medical examination consisted of you staring at my ankles for approximately 20 seconds and saying okay. Your office was also quick to file another insurance claim for that visit. Total time spend receiving medical attention from you and your office to include body weighing, blood pressure, and your consultation for all four office visits did not surpassed twenty minutes (excluding the time spend in the lobby waiting area).

I am embarrassed and upset at myself, for being so stupid in believing that all doctors are always looking out for the better health of their patients. After I had been poisoned by this antibiotic, it only took me about two minutes, to research on the internet all the horrific fluoroquinolones side effects that are affecting thousands of people on a daily basis. I am positive that you as a medical doctor may have better and more accurate access to the side effects statistics and devastating side effects of these antibiotics. If you would had advised me of the Levaquin possible side effects on February 23, 2015, I know for a fact I would have told you “NOOO, NEGATIVE” and asked you to prescribed me a penicillin based antibiotic.

Doctor, please take time to advice patients of the possible horrific side effects of these antibiotics, if you are still prescribing them.

As for me, my daily existence since the day after the last poison pill, has been a daily physical struggle, to which waking up in the mornings, is not a blessing anymore.

Doctor, I have no ill feelings towards you. I was just one of thousands of unlucky ones who have been poisoned by these demonic antibiotics. Ironically, I thank GOD that you did not prescribe me 750mg, instead of the 500mg, and or 10 pills instead of 5 pills.

I am okay in my heart; I hope you are okay too. I have faith in GOD, that one day; this whole nightmare will start to gradually ease off.

I realize now, it is greed and egoism what are controlling the fate of this world. The FDA, pharmaceutical companies and even some doctors, sole motivation is greed, and egoism with zero consideration towards human lives. Fluoroquinolones are devastating lives on a daily basis, but no one seems to care as long as the money keeps rolling in and they are not the ones getting poisoned by these antibiotics.

Lynda’s Story – Ciprofloxacin Poisoning

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On Friday, March 13, 2015, I went to a walk-in clinic as I was experiencing muscular soreness in my lower back, buttocks, and thighs. I was accustomed to dancing at an advanced level in Zumba classes as well as in other dance classes for about 25 years (two hours per day). The physician assistant had me take a urine test; he then came racing in the room saying more than once, “This is the worst infection I have ever seen!” He gave me a prescription for ciprofloxacin, 500mg x twice daily for five days. Understand, I didn’t present with a single symptom of a bladder infection, I wasn’t ill, I am 72 and weigh 100 pounds. Furthermore, he called me Monday to tell me that the culture had come back negative and that I never had an infection in the first place. I foolishly didn’t read about the drug before taking it and begin to experience symptoms almost immediately – so much so that I stopped the cipro after taking 5 of the 10 pills. The only other antibiotic I ever had a reaction to was clindamycin taken 22 years earlier; it took 5 months to get rid of clostridia difficil – vancomycin and cholestyramine were repeatedly administered. These are my symptoms from the cipro: ear ringing, eyes burning, muscle pain and weakness, muscle twitches, burning calf muscles, forearm pain, upper back pain, thumb, wrist, ankle and Achilles tendonitis, popping and cracking joints, widespread body pain, anxiety attacks, insomnia and extreme fatigue. I haven’t exercised at all since taking the cipro for fear of rupturing a tendon. I have seen many specialists, but to no avail. Needless to say, this is the worst experience of my life; I am terrified of what is to come. Each day, I truly feel like I have been poisoned – because in actuality, I have. There have been just a few better days during the past six and a half weeks that I have been suffering. As horrific as this has been (I have even had to pay drivers to take me to my medical appointments), I sense that my body is desperately trying to overcome these adverse events. If it turns out that I make a slow but steady recovery without any significant relapses, it may be that it was not ingesting fluoroquinolones in the meat supply for 29 years that was the main factor in my recovery. On the other hand, if the converse is true, it would mean that not being exposed to fluoroquinolones in meat, made no difference at all in my recovery. At the time of being prescribed cipro, I was 100% healthy and feeling wonderful; I can barely get through the day now and unlike my former self, am completely inactive, virtually housebound. Nonetheless, I remain hopeful and have been very kind, understanding, and forgiving of the physician assistant who prescribed cipro to me.

Bea’s Story – Cipro is Poisoning our Elderly Population

bEA

I was born in 1908 and will be 107 in May if Cipro lets me live that long….I have lost my typing “touch” so have to be brief.  I appear much younger than my age…..using a computer for over 30 years and an iPad for 3 ……just balanced my check book to the penny….so I am not the average old lady.

I have lost my typing “touch” so I will have to brief:

I was given Levaquin twice & Cipro twice within a period of 4 years…….the last prescription was Cipro in Feb. 2014 and it was such a shock, it changed my personality……….I canceled my Dallas newspaper subscription and started watching TV…………..I have no idea what I did or wrote, but I have  lost some  of my best e-mail friends.

My side effects are:

balance–constant fear of falling

loss of energy/strength/memory/sleep.

itching spells

pain., shoulders & hands

also,  pain that stabs & moves around

change in personality

left foot “goes to sleep” sometimes it is the whole left side of my body.

legs, and sometimes my body, jerks.

As I look back it all seems like a dream…..sort of cloudy …..as though I was just going through the motions of living but not really feeling it…..my body was so busy making all these horrible changes that it was all I was feeling………my mind felt different and I lost some of my memory……….I play Sudoku puzzles every day and memory has improved a bit, and I am stronger.

I am so angry to have all these precious last days taken away  from me ……when I would rather spend the time with my nine great grandchildren, 6 of whom live close by.

I write poems about aging and decided to add this one:

 

“Bugs” are winning the battle!

learning to resist the

antibiotics we all must use.

Scientists, franticly

trying to develop stronger ones.

Time may come when

antibiotics will kill the older people.

Bea White          2014 Poems ©

Heidi’s Story – Levofloxacin Harm

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Heidi wrote the following letter to several United States Senators, urging them to hold a congressional hearing about the harm done by fluoroquinolones.

Dear Senator,

I am writing, along with many others, to ask you to conduct a Congressional Hearing immediately into why adequate warnings have not been placed on fluoroquinolone antibiotic labels, including Levaquin, Cipro, Avelox and others, to also include ‘cartilage damage’ and ‘mitochondrial toxicity’.  This is in addition to the two already existing black box warnings for ‘tendon rupture’ and ‘peripheral neuropathy-nerve damage’.  I also urge you to demand that the FDA notify ALL DOCTORS to cease the widespread prescribing of Fluoroquinolone antibiotics on an outpatient basis; and to further restrict dispensing of these strong antibiotics to urgent life threatening cases where all else has failed and within a hospital setting. Perhaps some pre-certification process could be implemented for prescribing these drugs on an outpatient basis ONLY to those few who rely on them for serious medical conditions, have experienced no side effects, and with their fully informed consent.  The desire to retain the strongest antibiotics to fight increasing super-bugs is understandable even when problems are reported, but perhaps the solution is in very strict and limited distribution of these drugs.  Instead, these mega antibiotics are often set up as the go-to formulary antibiotics in many hospitals, some elder care facilities, and used as a cure-all in some physician’s offices for minor to moderate problems.

Our medical system should also establish a means to better educate doctors regarding updated potential side effects and interactions of drugs.  Doctors also need an efficient process for reporting patient’s drug side effects to the FDA and incentives or controls may be needed to implement this.   Improved monitoring by the FDA and quicker reaction when issues arise is also needed.  Greater effort may require better government funding for the FDA so they can effectively do their jobs without relying so heavily on funding from drug companies, a potential conflict of interest.  Furthermore, FDA testing of suspected problems with drugs should be conducted by independent laboratories and not by the drug companies that manufacture the product and have billions at stake.

I am a 60-year old female and had the misfortune of being prescribed Levofloxacin (generic Levaquin) for bronchitis on April 24, 2013, by a physicians assistant.  This was while my primary care doctor was away on National Guard duty.  After 1-3 days, I was so impaired that I could barely move.  Initially I thought I had a very terrible flu as my entire body was extremely achey with most joints making popping noises.  Both hips became worse as the week progressed, with very severe joint pain and both hips locking up while changing positions or direction.  Getting up from a sitting position was painful and I had to use hiking poles to walk or negotiate stairs.  I could hardly bend over and dressing and showering became difficult.

I had trouble lifting my left leg forward and it gave way several times.  I began to think I was getting polio or some strange disease until on day seven I read the drug flyer and single black box warning about ‘severe joint pain and to stop taking immediately, worse if age 60 or older or worse if on prednisone’.  I was almost 59 at the time and had been taking prednisone daily for 14 years.  Who would think that an antibiotic could do this level of damage so quickly?  I phoned CVS about my predicament and they told me Levaquin (and generic) had some reported problems and to file an FDA Medwatch form which I did almost immediately.  When I told the physician’s assistant about my reaction to Levaquin he gave me a weird look and said “there’s no way to know”!

During the remainder of 2013 the bilateral hip pain and locking up problems persisted with varying minor improvement toward year end.  I had MRIs suspecting labral tears in the hips, was treated by a pain management doctor, received cortisone shots, went to physical therapy for months, and consulted an orthopedic surgeon.  I also saw my primary care doctor upon his return and he agreed that my bilateral hip problems were very likely from the Levofloxicin since he had known me for years and knew that I was fairly active and problem-pain free before this.  He mentioned another physicians assistant in his practice that had also suffered with serious side effects from Levofloxicin.  During this timeframe my physical problems were obvious and conversations with several other people who had also taken Levaquin/Levofloxicin revealed that 7 out of 11 were badly impacted from it as well.  Two of these people have required surgeries in the knee or hip.  The problems of some resolved several months later but the problems of others still persist.

In most cases, when they suspected the direct connection with Levaquin/Levofloxicin, they were dismissed by their doctors.  In addition, none of these doctors informed their patients about the FDA Medwatch form and to my knowledge no one else has filled out the form.  The result is ‘no record of serious problems’.

During 2014 my hip problems worsened.  I tried more physical therapy, got high quality MRIs confirming acetabulum labral tears in both hip joints as well as arthritis, and consulted three more orthopedic surgeons.  Acetabulum-labral tears will not heal without surgery and arthritis can be accelerated as a result of labrum tears.  The conclusion by the surgeons is that my problems will not resolve and that I will need both hips replaced.

I easily found clinical-peer reviews on-line, authored by the Mayo Clinic, NIH and other doctors, citing the likely causal relationship of Fluoroquinolones to musculoskeletal damage of cartilage, tendons, ligaments, and healing of bone.  One NIH peer review of Fluoroquinolones referenced trial results including ‘destruction of cartilage in load bearing joints of juvenile animals in the study’, with a conclusion to not give Fluoroquinolones to children.  I found reports by the FDA and others acknowledging that these drugs can also cause ‘mitochondrial toxicity’, another serious problem.  Drugs should not be considered innocent ‘forever’ until proven guilty over and over.  A recent NBC newscast cites FDA statistics of 1,200 deaths and 100,000 people ‘reporting’ serious side effects from these potentially toxic drugs.  ‘Actual’ numbers are estimated to be ten times the ‘reported’ numbers (via FDA Medwatch form).  The widespread dosing and impacts of these drugs on many thousands of people in the USA and abroad, while vast numbers of serious problems are reported and suspected, is disturbing on a scale that is inconceivable.

I am more fortunate than so many others who have lost their jobs, homes, or more from these potentially debilitating drugs and believe this miscarriage of medicine has gone on far too long.   We deserve to hear from the FDA about adverse events related to Levaquin, Cipro, and Avelox and all their generics through a Congressional Hearing, as do doctors and patients.  Physicians, researchers, and victims like me are ready to testify.  Thank you for your concern regarding this critical issue which affects thousands of people in your state and throughout this country.  This could be you, your elderly parent, or your child. As a society, we must DO NO HARM!

Lori’s Story – Levaquin Effects

Levaquin-Stick

I was prescribed Levaquin 2/19/2013 — 500 mgs once per day for 10 days. In the beginning of March 2013 I noticed a lump on my clavicle and developed pain through my shoulder down through my scapula.  My PCP referred me to an orthopedic doctor who took X-rays and found nothing out of the ordinary. He then gave me a steroid injection at the site of the lump and told me to take ibuprofen. Within a month the pain spread to my other shoulder. And within a year I basically had pain in every joint of my body. Especially my wrist, knees, and ankles. I even have pain in my knuckles. Sometimes the pain and ache is so severe it keeps me awake at night. I had all sorts of blood tests done. I was tested for Lymes disease and rheumatoid arthritis. Both came back negative. I showed no signs of inflammatory disease in my blood work. I was then referred to a Rheumatologist who I’ve seen several times. He basically just said I have chronic joint pain. I asked him about the Levaquin connection and he just blew it off. He just told me to take Naproxen and Tylenol. I went from being an active 49 year old to a 51 year old who feels like a cripple. I had a very active lifestyle of walking/hiking, attending exercise class, swimming and kayaking to not being able to hardly do anything without being in pain. If I walk or I am on my feet too much my ankles swell and I lie awake in bed with pain. If I clean my house I’m in pain afterwards. I sleep with a splint on my wrist because of the pain and I can’t even lift a baby with my right wrist due to the pain. At times I go to walk and can barely move my legs they are so tight and my knees feel like they’re going to give out on me. Thanks for listening to my story and I hope this information helps you to make a change.

Chris’s Story – Cipro and Ibuprofen

Chris Landscape

I was prescribed cipro for a toenail infection on October 22nd. I went to the emergency room at 3am because it hurt so bad (the ingrown toenail). I was given a script of cipro and ibuprofin 800mg. I went to walgreens, picked the script up, asked the pharmacist if it was okay to take together and he said “yes just make sure to eat something so your stomach doesn’t hurt”

I would say what I experienced was way more than a hurt stomach. I was dizzy, anxious, bedridden and eventually suicidal and wanting to hurt other people after taking this med. Just so you know I am a very loving person, just a very traumatic thing for me I had severe chest pains 24/7. I went to the ER eight times with no luck. I was sent to the psych ward against my will once and then the second time just for being suicidal. I was so suicidal I wanted to jump eight floors from my balcony or buy a gun and shoot myself in the head. I was actually going to go to the gun store down the road, buy a gun, drive two hours away to the hills just to end my life.

I would rather have had my toe amputated instead of going through life like I did bedridden and suicidal and wanting to attack other people especially loved ones. Just think how hard that is. I am also $2500 in debt just from completely clueless doctors after literally EIGHT er visits! Just glad I have insurance as my total care was over $50,000! I too have suspicions when going to the doctor now, just wondering if they really have any idea what they’re doing. Just before leaving the ER that night the doctor told me the med (cipro) was just a generic med, made it sounded fine, just trusted what he said and went and took it. I took 20 pills over the course of two weeks.

I would have liked to known blowing my brains out was a possibility. I would have liked to known about buying a guy driving two hours away to end my life was a possibility. I would have liked to known jumping eight floors or wanting to hurt other people was a possibility as well. I would have liked to have known about the eight ER visits and two psychiatric ward visits as well. I would have liked to known about the debt as well. I would have gave it (the cipro) right back to him. I would have opted for an amputated toe instead of this mess – left me traumatized basically. I would like an explanation how I go to a fun loving uncle on October 21st to picking my prescription up on October 22nd at 3 in the morning wanting to jump eight stories or blow my brains with a gun out the day after taking this medication. I would hope doctors share my story with their patients before giving them this medicine. FORTUNATELY, I am better now and back to normal. I am no longer suicidal and living a normal life now, just lucky I guess. I would have to put this med alongside with date rape drugs or something, just completely messed up medication. Just can’t help but wonder sometimes..just take this medication off the market. I wouldn’t know if it has uses or not. I wouldn’t know as I’m not a doctor, just a computer technician. Just as a follow up, this med and the other floros are on my allergy list now, just so I never take them again.

Mindy’s Story – Hell Within

Mental-health-007

Tomorrow will be 4 weeks since I took Levaquin and ended up in the mental ward of the hospital. I am guessing that I had a psychotic reaction to the medicine. I told my doctor, but he said it only effects the joints.

I don’t like talking about it, I’ve only told 2 people.

I was given Levaquin for a chest cold. I took it and went to lay down for bed an hour later. I laid down and closed my eyes and saw in my mind’s eye a huge, flashing light. I freaked out and went to the kitchen. There was a knife on the stove and something was pushing me to grab it and do something to my husband. It was such a strong feeling. I grabbed my phone and ran out of the house to the street and called the sheriff and told them to come take me to the hospital. All I could see was that light, there was nothing in the world but me and that light. I got to the emergency room. While waiting for the doctor, I asked the nurses to restrain my hands. They wouldn’t. A male nurse came in to draw my blood. I had my eyes closed when he came in, but my sense of smell was so strong, I could smell his male scent and I wanted to attack him. I just laid there with my eyes closed.

They took me up to the mental ward, no one had any idea what was going on with me. I have dealt with panic attacks for years, so they kept giving me medicine for the attacks. My body rejects most medicine, so if one medicine made the attacks worse, then they gave me another and another. An antidepressant too.

I didn’t sleep for 50 hours, I lost track after that. With the flashing light came thousands of images that flashed through my head. Dark things that I have never seen. Eventually it all subsided, then they gave me the Levaquin again and the flashing light and images were back. I knew then what was causing it and told them not to give me the Levaquin again. Through the experience, I felt my brain being fried and parts of it shutting down like it had enough, so it quit firing. I still don’t feel most of my brain. It is numb or dead or damaged. I dunno.

The thoughts don’t come as often. Strange things that I never thought of before the Levaquin. Like, the thought of what the texture of roadkill would be like in my mouth, the thought of driving into oncoming traffic, the thought of hurting my beautiful little kittens, the thought that cat poop smells good and I should rub it on my body. I am so scared of everything now and I’m scared of myself. I was going to hang myself when I got home due to the dark thoughts.

I have the physical symptoms that floxed people talk about, but what does the body matter without the mind?

Ron’s Story – Levaquin Induced Gulf War Syndrome Symptoms

Ron FQwall

My story begins in 2005 when I was working at a startup that had mostly management and very few hourly employees. Most had startup experience and would not work all the hours the ownership wanted. So at the most critical time of the companies history I was working 13-16 hour days and was totally exhausted and forgot I had an old water cooler filled with tap water that had been sitting there unattended for 8 months. I woke up half sleep walking from exhaustion and mistakingly had a cup full of the water. Not realizing it had algae growing in it and what ever toxins that where in it.

2 days later I was suffering from a severe infection and was sweating and drinking gallons of water, sleeping in pools of water and working 13-16 hours while trying to keep the company going and trying to ensure every one else kept their jobs. I finally made it to the doctor during the off hours and he gave me zythromax with no stool sample taken or anything to try to figure out what I was infected with. By then the damage was done and I had insomnia and a compromised immune system and spent the next 4 years seeing different doctors and taking any number medications trying to treat the insomnia and the slew of symptoms related to the damage.

After having insomnia for 4 years and only getting 2 hours of sleep maybe every other day and crashing hard sometimes and in and out of the hospital every winter during flu season and my body had given up I was prescribed levaquin for a upper respiratory infection on November 10 of 2009 I took one dose and slept. I took the second dose and was awakened to my tinnitus screaming like a cannon had gone off by my head. I had noise induced tinnitus from being a armorer in the USMC but this was something new and ungodly. Also my whole body was on fire and my heart was freaking out in my chest. I jumped up and hopped in my car and hauled my self down to the hospital.

They switched antibiotics and monitored me for a few days. I kept going in and out of afib every time I had to much stimulants like alcohol and coffee and cigars or any slew of triggers and my immune system kept crashing. Eventually they had to cardiovert me and at some point after that I lost my job so I went to the VA to try to get help. They treated my elevated tinnitus with in ear sound generators but would not buy the fluoroquinolone reaction as having anything to do with my CNS problems. So I was back to square one with the new doctors.

One day I went to the VA complaining of heart pain and they sent me to specialists that did a treadmill stress test. They found SVT induced afib and started me on propafenone which stopped the afib and also allowed me to sleep. During this time all kinds of other symptoms started to show up like inability to sweat, could not exert myself and still catching every cold and flu around. Since it looked like no one was going to believe me I started to research everything I could and one of my coworkers mentioned that a relative was in the Gulf War like I was and he said it sounded just like Gulf War Syndrome. So I started looking up all the info and researching all the things everyone has tried and started doing that. Supplements that stimulated brain growth factor, immune growth factor, nerve growth factor, neuroprotectant supplements, B vitamins, Iodine therapy, Acetylcholine cofactors, colostrum for mycoplasma and immune support.

All the while waiting for the catheter ablation techniques to improve until one comes along I could feel confident trying. I eventually stumbled on the Flox report and started looking into vagus nerve damage and neurotransmitters which lead me to acetycholinesterase inhibitors and racetams and nootropics. After coming up with my own cocktail of nutrients and supplements and damaged nervous system supplements. I took this for about a 1 year adding some new ones and subtracting some that seemed not to do anything while changing my diet and finally sleeping 8 hours or more a day and most of the symptoms resolved and the tinnitus almost back to pre-levaquin levels except for afib and the run away heart from stimulation via to much food, alcohol, tobacco or exercise. I can keep from going into afib and keep the heart under control with ACE inhibitors or high affinity choline uptake enhancers (coluracetam, oxyracetam). If I stop them then I can go into afib again if I have alcohol or tobacco or a big meal. It seems to have messed up something in my hippo campus and or vagus nerve system that controls the sympathetic and parasympathetic systems.