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

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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

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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.

Michelle’s Story – Cipro Induced Lupus

Michelle Lupus

The diagnostic paperwork says, “Lupus – onset 3yrs ago: Triggered by Cipro use.”

 

Michelle’s story:

July 21st.2011 a day I will never forget. The day that I had my severe adverse reaction to Cipro.  The day prior I had went to my Dr.’s office because I felt the onset of a UTI, my children were in town and I didn’t want to be laid up in pain.

The Dr. asked me if I had taken Cipro before, I said “no.”

She then said to me really fast “If you feel pain in your arms let us know”. Then headed out to see the next patient.  I took 3 pills.. a dose and a half. An hour or so after my last pill I took I was so weak to lift my finger felt heavy.  My body ached everywhere. I then became so tired … It took my husband about 10 minutes to wake me up..to even get a reaction out of me.

Ever since then I have experienced heart racing, seizure, temporary hearing loss, stinging, burning, tingling, and numbing in my arms, legs, wrists ankles fingers shoulders…everywhere.  I have been up for hours at night crying in so much pain everywhere I just wanted to die.  So weak, exhausted. I have had loud ringing in my ears, my blood pressure has elevated to 140/100. I have never had high blood pressure. I am losing about 3 pouds a week. I have a huge loss of appetite.

I feel as though acid is running thru my veins and my body is burning inside.

These are just some of the things I have experienced , certainly not all.

Prior to Cipro I was active, loved to laugh, loved to go on walks. I smiled all the time. Now I am lucky if I can walk down 3 aisles at the store without stopping. It takes so much energy just to laugh.

Cipro has robbed me of me. Sucked everything out of me.

I didnt want my kids to have to deal with me in any kind of pain while they were here, I was doing the right thing by seeing the Dr.

What they ended up seeing was me in devistating pain, tears that will not stop and wondering if I was going to make it.

The Dr. didnt try anything else prior to giving me Cipro, didnt tell me that it had huge risks.. didnt even give me the option to choose.

I am forever scared of Dr.’s and they’re intent from now on.. never will I trust them.

I have told everyone I know to never take this , Those closest to me have seen the devistating effects of Cipro. For I have felt pain where I never knew pain existed..

My life has done a complete change.. the life I once had is gone. The mental anguish this has given me is beyond words..

everyday something new..the pain never stops.

Note – Three years after Michelle took Cipro she was diagnosed with Lupus.  Her paperwork stating that Lupus was brought on by Cipro is pictured above.

Christopher ‘s Story – Cipro changed my life forever

Swallow This

18 months ago, my liver shut down and I was diagnosed with end-stage Liver disease.  I was in and out of the hospital 13 times and the last time I was on my back for almost 3 months.  During the most critical phase of my treatment, I was prescribed ciprofloxacin (Cipro) to fight infection of the fluid that was gathering in my abdominal cavity.  I was given the Cipro in the hospital and then upon my release was prescribed 100mg Cipro daily.  The fluid eventually ceased to be a high priority concern, but even though I was under the care of several specialists, none of them were aware of the toxicity of this drug.

I was unaware of the danger too.  I was very sickly and symptomatic but figured that it was my liver causing all of these issues.  The fluid retention was directly due to my liver failure, but some of the other symptoms began to get worse and I thought that it was what dying felt like.  I can’t list ALL of the symptoms, but here is some of what began to happen; my vision began to deteriorate and I was seeing light and shadow forms.  I got glasses but grew out of the prescription in weeks.  My hearing became distorted.  I started to have a lot of forgetfulness and confusion.  When I went places I would blank out and not know where or why I was there.  I started to find it difficult to remember how to speak, I couldn’t remember the last word I said or what I was even talking about.  I was fatigued all of the time to the point where I had to lay down during my meals.  My blood pressure was so low that I had some mini-strokes and have some permanent residue from them.   I couldn’t lift my arms above my head and it was painful to stand up.  I started getting injured a lot…in bed!  I would roll over on a pillow and something tore in my ribcage.  The pain from these injuries would last about a month and this happened 6 or 7 times.  Finally my teeth started to deteriorate and calcify as well.  This happened very suddenly.  My teeth then began cracking and breaking off at the gum line.  Eventually I lost all of my teeth.  It was the scariest thing I have ever experienced in my life.   Eventually it got to the point that I felt as if I had gone crazy and there was no return.  I began planning my funeral.

My liver numbers were getting better but I was feeling worse.  People said that I was just run-down, but after my teeth fell out, I knew something was very strange.  I started to get curious about some of the meds I was taking and found an article titled “Cipro is Poison”.  In that article, the author mentions dental damage and then I started reading about the other symptoms.  I had every single one of them.  I immediately stopped taking Cipro.  Slowly, very slowly some of the most painful symptoms began to subside a little.  My memory started to come back, eventually I stopped tearing connective tissue, I could speak better and movements became less painful.  Of course my teeth are never coming back but I took Cipro for 8 months at that dosage and I am just thankful for some of the symptoms to have ended before the damage even got worse.

I do not blame my doctors.  I have great doctors, but they were not informed or aware of the long term damage that Cipro can do.  They were too busy saving my life to do the research that should have been readily available to them.  Both the manufacturer and the FDA minimize these findings and take what is plausible and try to pin it on the other’s side.  No one will admit anything.

I am still awaiting a liver transplant, but I am healthy.  Besides my teeth, the most lingering effects of the Cipro are joint and muscle pain.  I also feel my diet had a lot to do with my recovery, but that’s another topic.  The only thing I can do at this point, is NOT TAKE CIPRO!  For when I get my transplant, I have it written into my chart that I refuse Cipro in ALL situations.  I hope this helps someone to cope as the article I read, did for me.

Heather’s Story – Cipro and Avelox

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Lisa’s Story – Avelox Effects

Lisa Brady Pic

Note – Lisa Bloomquist is the administrator of this site and all of the posts have her name at the top.  This story is not Lisa Bloomquist’s story.  It is Lisa Brady’s story.  Sorry for any confusion!

In February 2012 I was suffering from a fairly severe upper chest infection and after two weeks of feeling like I was close to having walking pneumonia, I was begged by friends that I needed to see a doctor as I do not like going to docs unless absolutely necessary and very rarely ever take antibiotics ( I am sure I was floxed before in past surgeries throughout the years without my knowledge). After going to see ‘Doc in the Box’ ( Immediate Care Clinic) and my regular doc was out, I was seen by an abrupt internist, after a brief 3 minute examine, she indicated, ‘yes, you have walking pneumonia, I’ll give you this antibiotic that will wipe this infection out in two minutes flat!’. I replied, ‘Really? You know from my chart I have an autoimmune disease, is this drug ok to take with my sensitive system?’ ‘Of Course!’ says she…and it turns out after a chest xray, no pneumonia. However, consumption of Avalox has already been consumed…

Within 24 hours, the infection was getting better, the deep, crupe type cough was beginning to ease, however, I was feeling this terrible dread, like all of my happiness or positive feelings had been squeezed out of me, I know it’s a strange way to describe it, but that was the first of many, many Adverse Reactions I began and still, to this day experience, almost 3 years later, and no, it does not ‘leave your system after a few days’.

The other ‘side effects’ came on like a sunami raging not only my body, but in my head too. I was already in deep chronic pain from a fall down a deeply steep hardwood stairway in my home, resulting in many fractures in my sarcum, also my cocxyx has twisted off and had attached itself to my lower spine, and went unnoticed by the Doctors for three months in 2008, resulting in two spine surgeries and chronic pain that felt like I was turning into the girl from the ‘Exorcist’. The first night I took one 500mg Avalox, my joints felt like acid was running through my veins, and it felt as if my olfactory was destroyed, I could only ‘smell’ deep, burning rubber. Then my heart started fluttering and felt as if it would come out of my chest. That night the hellish nightmares started and it has not let up on me. I was unable to walk for up to two weeks, could not lift my legs that had turned into water and the fatigue, and lethargy are indescribable. I also experienced psychosis, deeply disturbing suicidal thoughts, could not stop crying for months ( sounds like depression!) absolutely could not hold cognitive thought process, vomiting for days on end, tremors, anxiety, hallucinations, severe dizziness, numbing, burning sensations of hands, feet, legs, bleeding gums, bone pain, dry mouth, weight gain, increased thirst, problems with speech, complete brain fog and the list goes on and on. Because of 5 pills I took, (only took 5 of 10 pills prescribed) the results have been flung far and wide:

I lost a very lucrative corporate catering contract I had under my consult for the past 15 years that at times earned me over six figure income that supported my daughter and myself.

I lost many friends that thought ‘it was all in my head’ and ‘An antibiotic couldn’t do this to you or it would be banned from the market, right?!’

I lost the person I used to be. The person whom never thought something like this would happen to me. (Humility one oh one)

I lost the ability to support myself and my daughter and now looking at filing bankruptcy, cannot get disability, almost zero child support and now living day to day.

HOWEVER, I am not going to let this devil of a drug take the rest of my life from me, from us! I have always been a fighter, even though I fight from my sofa, I will get better!

Thank you to all the FB groups whom have been so helpful and in my darkest moments, have helped me crawl towards the light…

Rob’s Story – Ciprofloxacin Devastation

Rob FQWall

I write this with great difficulty and almost at the point of despair. I have never felt as unutterably ill as I am feeling at this moment. I am losing sensation in my arms and I am having difficult gripping objects. My legs feel disconnected from my control and I walk like a Thunderbird puppet. Every part of my body is screaming at me as waves of electrical shudders start in my brain and travel outwards. I have terrible head pressure with loud tinnitus. It feels like a high pressure hose has been inserted into the centre of my brain and that my consciousness is being squeezed to a narrow point. The brain fog is painful and impenetrable and I experience no respite; only unremitting Groundhog Day hell with one difference, each day is worse than the one before. I am not exaggerating. I cannot express in words adequately what I have experienced during the last three and a half years. Please bear with me.

In March of 2009 I experienced some pelvic pain. Before this point, I had never had any pain worth mentioning. I had never had muscle or joint pain of any description, I could swim and cycle, and more importantly, I had a sharp and clear mind that was able to teach Chemistry and I was in a plum job working part-time in a local grammar school. Such times are distant memories. I saw a Urologist who diagnosed Non-Bacterial Prostatitis and he prescribed 6-week course of CIPROFLAXACIN. I took the first tablet and two hours later my life changed completely. I experienced electrical brain zaps and other indescribable head sensations that stopped me in my tracks. I was at the kitchen sink thinking I was having a fit. I knew something was wrong. Dreadfully wrong. I rang the GP Out-Of-Hours service who “advised” me to continue with the course of tablets. Foolishly I did. I should have trusted my own judgment but at that point, I still had faith in the medical profession. After all, I was a scientist! I returned to the sofa where I stayed virtually for two weeks. Brain fog descended which I cannot adequately describe. It was and still is like trying to think through an electrical mist and that somehow one is not able to think properly. Then came an awareness that something was going wrong throughout the whole body. I felt as if I had been systemically poisoned with strange pains developing everywhere. I went to see my GP who suggested that I discontinue the treatment. I did so, but of course, the damage had been done.

From then on, I rapidly descended into a hell from which I am trying to escape. Then began a sequence of visits to the A&E department. Each time I was informed that their checks revealed no abnormalities. LETHARGY AND STRESS WAS A POSSIBLE DIAGNOSIS. Take a valium!

I must be going mad.

In 2010, I underwent bilateral endarterectomise and in December 2010 I suffered a stroke – infarct in the right frontal lobe and haemorrhage in the right parietal lobe. A stroke brings with it its own physical and emotional challenges. Whilst in hospital I was given Zopiclone to help me to sleep. On discharge, it was added to my general prescription list and I took it for a year! My Neurologist, on discovering this was extremely concerned. He told me to stop taking it as it was affecting my mind and mood. I subsequently discovered that Z drugs are for very short-term treatment only. I discontinued and about 10 days I started to experience withdrawal symptoms. I was prescribed Diazepam. No withdrawal protocol was provided. After four months, I demanded that the GP get me off this stuff. I cannot believe the complacency and indifference displayed by whose vocation it is to care for the ill. I slowly withdrew, but the toll the benzo was having on my already cipro-damaged and sensitised body was becoming too much. I went cold turkey from 3mg a day on the 7th of December 2012. I am now going through withdrawal nightmare!

My damaged neuromuscular and CNS is exquisitely hyperexcited. I have insomnia of industrial proportions. I continue to have every symptom described by others who have been affected by fluoroquinolone toxicity. I feel medically abandoned, isolated, vulnerable and frightened. I don’t recognise any part of my body or personality. I honestly don’t recognise my FB profile picture. I have lost 15 years of memories. I know I used to teach but I cannot recall my subject. I have been transformed from a reasonably healthy and fit man to a mental and physical wreck.

Cipro has cost me a relationship, my livelihood, my sanity and my health, unwittingly aided by a medical profession whose attitude to adverse drug effects is one of complacency and indifference Ignorance can be rectified, wilful ignorance is abuse!

My only sin was to have a misplaced faith in doctors.

It has been a descent into iatrogenic hell. A hell that even Dante could not have conceived!

To all who read this – THINK LONG AND HARD BEFORE TAKING FLUOROQUINOLONES!

The help and support from family and friends is what sustains me. Thank you!