Jon’s Story – Tinnitus from Fluoroquinolones

/ Lisa / 6 Comments

In December 2016 I fell from a ladder and fractured my Coccyx, one of the complications that came on about 2 weeks after the impact were symptoms of a non-specific urinary tract infection and blood in my semen. I was prescribed by my doctor a 1 week course of Ciprofloxacin, 2 tablets a day. I’m usually reluctant to take antibiotics but due to the worrying nature of the symptoms I started the course in good faith.

Mid way into the course of treatment (having taken 9 out of 14 tablets), I returned home from work that day feeling dizzy and unwell and went to bed at 9pm. At about midnight I woke with the most alarming ringing in my ears, completely deafening in volume that made me leap from the bed and shout to my wife in a highly stressed state. The ringing subsided slightly over about 15 minutes so I tried to calm down and return to sleep. As soon as I started to fall into a light sleep the ringing would return to maximum intensity and wake me with a fright. This was the start of an alarming cycle which meant I was getting no more than about 30 minutes light sleep before waking up due to the tinnitus.

I called my doctor the next day and as my infection symptoms has subsided he agreed I should stop taking the Ciprofloxacin and that my tinnitus should disappear as the medicine left my body. However this was not to be the case, during that first day I was aware of a constant hissing in my left ear and a higher pitch whistle in my right ear. That night when I tried to sleep the same cycle continued, on falling asleep the tinnitus would ‘spike’ and wake me a short time later at such a loud volume if felt like a pressure valve going off in my head. It would subside over several minutes, I’d fall back asleep but the same pattern would continue. After a few days I became increasingly exhausted and distressed, the hissing ‘soundstage’ would remain during the day and at night the spikes continued I’d have the most terrible time sleeping. I couldn’t work and returned to the doctor several times in those first couple of weeks who said I was experiencing an acute stress reaction to the sudden onset tinnitus. I returned to work after about 3 weeks but had never felt so broken and at a low ebb.

The months that have followed have been tough. The tinnitus is always there during the day and still very loud during the night, I’ve found that it is quieter in the morning and builds throughout the day in volume. It also varies in intensity in each ear day to day and this changeability makes it very hard to habituate. I’ve been seeing an ENT consultant who reported my reaction to the drug and carried out an MRI scan to check if there was anything underlying that could have caused the problem – there wasn’t. He confirmed that my hearing has been affected and I’ve experienced moderate high frequency hearing loss in both ears.

I’ve had some cognitive therapy treatment from a hearing specialist working with tinnitus sufferers which has helped a little. I’ve found coping techniques such as playing ocean noises at night have helped improve my ability to sleep which has meant life has returned more or less to normal. I do however feel my tinnitus symptoms are gradually worsening over time, I seem to have more bad days and nights than I used to in the early months. Recently I’ve had a head cold and that seems to have worsened them still and at times i struggle with daily life and feeling positive. My ears are very sensitive to loud noises now. My wife and I sleep in separate rooms because of the sleeping issues, this has impacted on our relationship and the ease of doing things we used to enjoy such as nights away. What saddens me most is that my life feels compromised, my wife see less of my fun side and not able to be the strong one in our relationship any more.

My wife recently became pregnant for the third time and we were concerned that my health issues along with some other significant pregnancy health risk factors affecting my wife that a third child (3 under 3 years) would put both too much risk and pressure on our family. We made the unbelievably difficult decision in December 2017 for an early termination of the pregnancy to ensure we can focus our love and attention on our 2 young boys already here. Whether we would have made the same decision if I’d never taken Cipro and the challenges that this has brought into our lives is something that will haunt me to the grave.

My wife and I both felt something positive needed to come from our sad decision so this year I’m committed to getting the support i need to help me with my tinnitus starting with a local tinnitus support group and audiology assessment later this month. I’m focusing on the loved ones in my life and being thankful every day for what i have. I’m making sleeping separately the exception rather than the norm (trialling a sleep headband that plays sound). I’m eating healthily, drinking in moderation, going to bed earlier and doing more structured fitness all which helps with my mood and general well being. I’m determined to live life to the full and bring happiness to those i love despite what has happened to me.

** The story above is truthful, accurate and told to the best of the ability of the writer. It is not intended as medical advice. No person who submits his or her story, nor the people associated with www.fqwallofpain.com, diagnoses or treats any illness. The story above should not be substituted for professionally provided medical advice. Please consult your doctor before trying anything that has been mentioned in this story, or in any other story on this site. Please also note that people have varying responses to the treatments mentioned in each story. What helps one person may not help, and may even hurt, another person. It is important that you understand that supplements, IVs, essential oils, and all other treatments, effect people differently depending on the millions of variables that make each of us unique. Please use appropriate caution and prudence, and get professional medical advice.

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Steve’s Story – Cipro Induced Chiari Malformation

/ Lisa / 11 Comments

I was poisoned in June of 2015 by cipro and it led to Chiari decompression surgery: taking a chunk out of the back of my skull, removing back half of my C1 vertebrae, and removing a piece (and then putting back) of the lining of my lower brain. IT CAUSED DRUG-INUCED CHAIRI. Then I had to fly to Barcelona, Spain to have the bottom of my spinal cord released to help reduce pressure on the bottom of my brain. Since the cipro I have been diagnosed with the following which I never had before taking the drug: chairi malformation, tethered cord syndrome, heart nodules, start of lymphoma, limpoma in groin, central apnea, obstructive apnea, peripheral neuropathy, cervical instability, and now a possible abdominal aortic aneurysm. Oh yeah, and I have gotten to spend the past two and a half years in bed.

Laura’s Story

/ Lisa / 7 Comments

i am currently 26 with SLE Lupus, liver disease, asthma, major back problems seizures, auto immune disease, unable to walk or stand. wheelchair bound severe nerve pain and numbness and tingling that get’s worse everyday. severe back pain my body starts shaking out of no where. i took cipro a few times for UTI but didn’t have any severe symptoms till the last time 2015. i had surgery ended up having a UTI gave me cipro after having to come back from an allergic reaction to percocet and morphine caused me to have seizures again after being seizure free for 10 years. i couldn’t stay awake and don’t remember much except what my family said that they gave me cipro through IV very high dose. i was hallucinating really bad having excruciating pain in my legs and bleeding it wasn’t my period either i took it till i got out then i stopped it cause it was to much. about a month later the pain in my stomach returned and i started losing feeling with sex and started having more pain every day. i was in so much pain i couldn’t work and the seizures started getting to the point they were every minute or less and i would have a long where i wouldn’t be able to talk and lose all my strength and energy that happened 5 times in in 2015.

my memory was going on me i felt so sick all the time didn’t want to eat sometimes. then i found out i had sever fatty liver disease 84% fat that was september 2016 and my gall bladder was severely diseased and had to come out. i was very sick after i got it removed and a month after i started having bladder problems where i couldn’t control my bladder and going all the time and starting having pain again in my stomach not as bad but some pain. may 2017 i was working at out of no where i got exhausted and couldn’t stay awake i finished my shift but barely able to stay awake or walk my husband had to help me to the car. next day i was extremely slow slower then a snail barely able to move and no energy. and then i couldn’t walk i went to sleep and went in a coma for a day and a half i couldn’t wake up i could hear off and on but couldn’t wake up. then i started having breathing problems while i was in the coma and started choking and shaking really bad and thought i was going to die i couldn’t catch my breath. i woke up ate a little something then went into another coma for almost 3 days and it was harder to wake from my whole body was shaking i couldn’t stay awake. since may i still haven’t got my energy back i’m exhausted and been in a wheelchair june i found out i have Auto immune disease july i found out Sle lupus.

August i started losing feeling in my feet and became tingly then my legs and worked up to my arms and hands and face. august 26th i was unable to move at all i started choking and not being able to breathe my whole body started shaking and my whole body became paralyzed i couldn’t move anything not even my mouth i couldn’t talk i was drooling and couldn’t stay awake. my entire body has been numb since until a few days ago where i started having nerve pain all the time feels like electricity is being run through me from my back , finger tips, arms, hands, legs, ankles and toes it’s to the point where i am starting to have to take pain medicine cause of how much pain i’m in. i am currently in rehab right now trying to get strength back so i can walk again i’m very weak and this pain is making it really hard. i also feel like an old person and wake up every day wondering what obstacles i’m going to face each day and will i wake up I hope your feeling better and get better my friend told me about this i never realized but it makes sense now.

Erin’s Story – Disability from Ciprofloxacin

/ Lisa / 1 Comment

Erin’s story was originally published on http://pointsnorthatlanta.com/important-questions-to-ask-your-pharmacist/. Thank you for sharing your story, Erin! 

As I left the gastroenterologist’s office in late July 2015, I did so with hope. I’d been experiencing unexplained nausea and bloating for a few weeks and, while hospital test results showed normal white blood cell counts and I had no fever, I was sent home with antibiotics as a ‘ just in case.’

I’d be better in no time; I just knew it.

The following day, I experienced numbness in my hands and feet, but was encouraged to continue my course. I did so, but the following weeks saw multiple trips to the emergency room, presenting with increased and body-wide symptoms.

No doctor could figure out what was wrong. The symptoms continued to pile on, and I was baffled. Neither I nor my doctors made the connection to the ciprofloxacin antibiotic I’d been given.

I was hospitalized by mid-August, given more antibiotics, iron and steroids.

I have been disabled ever since.

Prior to taking the ciprofloxacin, I was a 34-year-old newlywed and world traveler whose career was going so well, I decided to strike out on my own. But that bout of nausea — which was later resolved by a simple proton pump inhibitor — and that fateful prescription for antibiotics set me on a course of 24/7, 365 pain that has not resolved.

The numbness became excruciating, burning nerve pain in my hands and feet. I spent all day in bed, covered in ice packs. Overnight, my previously perfect vision became light sensitive and blurry, and I developed a rare condition called visual snow. Head pressure, ear pain and popping became a ceaseless tinnitus. I was suddenly unable to sleep. At all. Ever.

At the same time, my blood pressure became unpredictable. My heart rate and body temperature vacillated wildly. When I stood, my heart rate would spike, and I would feel dizzy or faint.

I saw countless specialists, but none could help me. Most did not believe what was happening to me. I didn’t want to believe it either, but the evidence was all there: dozens of studies detailing the potentially permanent, debilitating side effects of Cipro and other antibiotics in the fluoroquinolone class. But I, like so many others, was never warned.

In March 2016, the body-wide joint, tendon and bone pain began. Suddenly, it became painful to walk, type or lift even light objects. My skin, eyes, nose and mouth became impossibly dry. My hormone levels were all over the place. My hair fell out by the handful. I was horrified. What kind of medication continues to affect you six months after you take it?

The answer: fluoroquinolone antibiotics.

In November 2015, the FDA held hearings with people like me who have become permanently affected, and, in some cases, profoundly disabled, from fluoroquinolone antibiotics. This year, the FDA issued a warning that these drugs should not be used except as a last resort where other antibiotics have failed. Risks cited include permanent musculoskeletal, nerve and central nervous system (brain) damage, for which there is no cure. What I, and many others, suffer from is called Fluoroquinolone Associated Disability.

Up to July 2015, I was a woman with no significant diseases or health problems. Today, I am a 36-year-old woman who has filed for Social Security Disability because I was given what I thought was a run-of-the-mill medication.

I tell my story to spare others the pain I continue to endure, and to encourage medical researchers to seek a cure.

** The story above is truthful, accurate and told to the best of the ability of the writer. It is not intended as medical advice. No person who submits his or her story, nor the people associated with http://www.fqwallofpain.com, diagnoses or treats any illness. The story above should not be substituted for professionally provided medical advice. Please consult your doctor before trying anything that has been mentioned in this story, or in any other story on this site. Please also note that people have varying responses to the treatments mentioned in each story. What helps one person may not help, and may even hurt, another person. It is important that you understand that supplements, IVs, essential oils, and all other treatments, effect people differently depending on the millions of variables that make each of us unique. Please use appropriate caution and prudence, and get professional medical advice.

What gets me through

/ Lisa / 1 Comment

Another teen devastated by a fluoroquinolones. When is this going to stop??

CIPRO...A RX FOR DISASTER

My name is Catherine.  I am a sophomore at Christopher Newport University, in Newport News, VA.  Until the summer of 2016, I was a healthy, active college girl, and maybe just a little klutzy. I love to be outside, hang with my friends, worship, and have been working hard toward my undergraduate degree, to reach my goal of being, of all things, a Pharmacist.  Cipro, an anti-biotic known as a Fluoroquinolone, has derailed me, in many ways. Physically, emotionally, academically, socially…The irony is not lost on me.

This is my story…

* * * * * * * * * * * *

Although I may appear fine, I am not. Nothing going on inside of my body, and sometimes on the outside, is fine. Rather, it is like an active volcano, with daily eruptions of hot lava surging through me.

Imagine your mom walking in and finding you on the bathroom floor…

View original post 430 more words

This antibiotic will ruin you.

/ Lisa / Leave a comment

Mountains and Mustard Seeds

4739Hi there, we need to talk. I have almost written this post at least 20 times and got too overwhelmed and abandoned it. Well here goes…

The antibiotics you took or are taking for your sinus infection, UTI, skin infection, laser eye surgery…ect…may have already damaged you.

Cipro, Levaquin, Avalox, nearly every generic ending in “quin”, “oxacin,””ox,”…are all part of a large family of antibiotics called “Flouroquinolones.” The FDA finally updated their warning on these antibiotics as of July 2016. They site “multiple system damage that may be irreversible. Permanent you guys. Here is the link for the warning if you are a doubting Thomas  https://www.fda.gov/Drugs/DrugSafety/ucm500143.htm. Take a gander real quick if you are reading this with an eyebrow raised. Trust me, I wish I had been given the opportunity to soak up this information before it was too late.

In 2010, I took Cipro for a UTI and it changed…

View original post 1,351 more words

Dear Doctors: A Letter from a Patient

/ Lisa / Leave a comment

dear-doctor

Written by S:

The following is what I have written in the hopes to one day be able to travel and see doctors and nurses in the eye and talk and see that we are human too. I am getting worse I am out of money and waiting for my long term disability to be approved to get more testing done. Till that time I hold on to hope I get my IV once a month and I look forward to a day when this will be but a memory and a issue I have over come. I really do think that now all over the world people are crying out for change. I believe in every part of what we currently use for process for the world to move forward this change must occur in all parts of government to the medical system the banking system etc… It’s hard for me to sit and do nothing. I can’t do much but I can try to help push for change. So if you like what I have written what has taken me months to properly formulate due to my symptoms please share. 

Dear Doctors,

I’m 36 years old and I have been damaged severely by antibiotics.

I know these words will make you tense some of you may have already stopped listening but I ask you to think why you are so afraid to hear my words, to quickly discount me, to try and silence me.

I am 2 years out from this and have gotten worse. I had zero of my current symptoms prior to taking the medication and yet Drs are quick to look at other possible reasons for my symptoms that have lead to me becoming disabled rather than accepting the fact that side effects from pills caused this.

My question to you is why? That is something that each of you must answer for yourself. It may be fear that you have indeed done harm by prescribing these antibiotics to others, it may be ego, it may be because me standing here telling you that the rates at which people are being damaged by pills is growing and that offends you because how dare someone who has not gone through the training you have dare question you.

I know that it is a difficult job to be in the field of HEALING. I use that word because that is truly the field you have chosen. It is to heal. My question to you is then why are we floxies so scary? Why do you want to discount us? I may be one person but I represent thousands of men, women, and children who have been harmed. Who are continued to be harmed. We looked for healing and because it is called the “medical” field and not the healing field and because Drs are encouraged and trained to see as many patients as quickly as possible do not become attached don’t see me as a human I am discounted and marginalized. I am quite real and there is a problem with the way we look at healing today.

I ask and would love the answer as to why naturopathic and holistic healing are not combined in a larger scale today. Why patients are not allowed to choose to have an IV or oil of oregano as their antibiotic rather than one made by the pharmaceutical industry. If it’s really all about healing than why can’t these worlds be combined and outside companies who have not been tainted be used to see if integrative methodology of healing is truly the best form? When you laugh or smirk at this that is your ego talking. No one person knows everything and yet naturopathic and holistic healing is consistently down played in western society as a whole. My question is it ego that is preventing this integration to increase, is it pressure and power from the pharmaceutical industry to only use their methods, is it lack of knowledge about natural and holistic healing? My belief is that it is a combination of all three and I am sure other issues such as the question has healing become a business and when you turn people away due to lack of funds  or when the billing department dictates who gets to be seen by a Dr based on insurance and not need what message does that send.

I ask that you look at me as see I am very real, I am human and I deserve and every person on this planet deserves to be treated as such. When you marginalize me or say well side effects happen all of the time you are telling us that we are an accident and we do not count. We do count I can assure you the pain and the frustration alienation that we receive are very real. The message to us is very clear that we scare you that we are a reminder that western medicine does do harm and you want us to go away. I am here to say please stop fearing us and let’s all work together to find a way to minimize damage to create better methods to hold those that create drugs that do damage accountable and to get back to healing everyone by using the safest and most effective method.

-S

** The story above is truthful, accurate and told to the best of the ability of the writer. It is not intended as medical advice. No person who submits his or her story, nor the people associated with www.fqwallofpain.com, diagnoses or treats any illness. The story above should not be substituted for professionally provided medical advice. Please consult your doctor before trying anything that has been mentioned in this story, or in any other story on this site. Please also note that people have varying responses to the treatments mentioned in each story. What helps one person may not help, and may even hurt, another person. It is important that you understand that supplements, IVs, essential oils, and all other treatments, effect people differently depending on the millions of variables that make each of us unique. Please use appropriate caution and prudence, and get professional medical advice.

Vicki’s Story – Levaquin induced Transverse Myelitis

/ Lisa / 6 Comments

vicki-fqwall

In Sept 2007 I was given Levaquin for a sinus infection. My sinus infection returned through November and in December I developed Bronchitis, for which my Dr. prescribed Cipro, with a follow dose of Levaquin. On Dec 28, 2007 I sat down to dinner and felt a “shot” in the back between my shoulder blades, and it felt like fire shooting out through my breast bone in the front. I was immediately hit with spasms around my rib cage that made it difficult to breathe. I thought I had coughed so hard that I ruptured a disc. I knew I would have a difficult time being seen at the ER, so I took a muscle relaxer and went to bed. The next morning I woke up and the first thing I remember is that my legs were ice cold. I tried to get up and go to the bathroom, but soon realized that I I had lost the use of my legs. I also lost control of my bowel and bladder function. My husband took me to the ER of our local hospital. After sitting in the waiting room for 7 hours, the hospital filled up and went on diversion – sending me home without having seen any medical official. We went to our local medical college, where I was taken straight to an ER room. I was there 17 hours, had 3 MRIs, and saw a dozen doctors (some were residents). The ER doc requested a Neuro consult, but since it was New Year’s weekend, the orthopedic dept was taking their calls. So I never saw a neurologist. I believe if I had, they would have correctly diagnosed me. As it turned out, the docs at MCG had no idea what was wrong with me and sent me home with some Valium. I continued to decline, and the nerve damage spread further up my spine. In March 2008 I finally got in to see a neurologist, who took all of four minutes to recognize that I had Transverse Myelitis caused by the Levaquin/Cipro which were given along with steroids – which have since been proven to make severe neurological side effects more likely. I was paralyzed from the chest down for about six months before I began to recover some feeling in my toes. Over the next two years I had almost continuous physical therapy, as well as Radiofrequency Ablations to my spinal cord to help deal with the intense burning nerve pain. I continued to recover some function during that time, and in 2011 was able to stand and walk on my own again – although not up to normal standards. Now it is 2016 and I still suffer from burning pain in my thoracic and lumbar spine, have decreased strength in my legs, and balance issues. I’ve fallen six times over the last 4 years, and my spine has begun to degenerate at an accelerated rate. I also continue to have bladder retention, and bowel incontinence. This condition has completely changed my life. I feel blessed to alive and to have recovered as much as I have, because the majority of people who get TM either parish, or remain in wheel chairs or nursing homes the rest of their lives. However, if I had known that these fluoroquinolone antibiotics had the potential to cause such life changing damage to my central nervous system, I would have never taken them. I’m glad the FDA put a black box warning on these drugs this year, but I still feel it needs to be stronger and more clearly describe the type of life changing or lethal effects these drugs can cause.

I know there is no cure for the neurological pain that I have. I have to take a ton of other medicine now -Gabapentin, Baclofen, and Skalaxin to control the pain and spasticity; Celebrex for inflammation, Valcacyclovir to ward off viruses, Singluar to control allergies and asthma. The acute treatment for TM is high doses of IV Steroids, followed by high doses of oral steroids until the TM is in remission. All those steroids wiped out my immune system and I was diagnosed in 2013 with CVID – Common variable immunodeficiency, Then I had to start getting monthly infusions of Immunoglobulin. In 2014 I had a reaction to the IVIG infusions, so now I can’t have them any more. My IgG is still hundreds of points below normal, so I pretty much stay in isolation at home. I am able to go to stores during off peak times of day, but I avoid anyone with a cold or illness, and avoid being inside a room with a crowd of people. That means that I am not able to go to church as I did before. Another side effect of the TM is that now I’m allergic to most antibiotics except 2 oral and I IV antibiotic that I rely on when I do get sick. Thankfully, I’ve avoided additional sickness for the last 3 years, since I don’t have the immune system to fight it off. I’ve also had anaphylactic reactions to most pain meds, so I have to rely on the Gabapentin to control the pain. It comes with its own side effects, but thankfully I’ve learned to manage them and live with it. I have a faithful and loving husband. We now have 3 grandchildren, and one on the way in May 2017. I have a loyal Cocker Spaniel and this year I have begun to draw again. I look for joy in life every day, but at the same time I am always aware that I am not the woman I was before taking the Fluoroquinolone. There is never a morning that I don’t wake up in pain, or a night that I don’t lie down packed in ice packs to deaden the pain so I can sleep – or when I don’t wake up at least twice in pain and have to change positions or get up to replace the ice packs. There are still days when I have such brain fog that I can’t put two sentences together. Even on good days, I’ll start to tell somebody something and get to the end of my sentence and can’t find the word that was just on the tip of my tongue. I used to be a productive member of society, active in my community and in my church. I’ve learned to live with the isolation and loneliness that comes with being disabled like this, but there are still days when it is a heavy load to bear. I still love my life, my family and friends, but what wouldn’t I give to go back to that day and know better than to take that Levaquin. I wish I could warn everyone in the world about the dangers of these drugs and avoid somebody else going through what I have. Thank you for reading this.

** The story above is truthful, accurate and told to the best of the ability of the writer. It is not intended as medical advice. No person who submits his or her story, nor the people associated with www.fqwallofpain.com, diagnoses or treats any illness. The story above should not be substituted for professionally provided medical advice. Please consult your doctor before trying anything that has been mentioned in this story, or in any other story on this site. Please also note that people have varying responses to the treatments mentioned in each story. What helps one person may not help, and may even hurt, another person. It is important that you understand that supplements, IVs, essential oils, and all other treatments, effect people differently depending on the millions of variables that make each of us unique. Please use appropriate caution and prudence, and get professional medical advice.

Andrew’s Story – Life Devastation from Cipro

/ Lisa / 18 Comments

andrew-fqwall

This is my story.  Add it to the other terrible stories on this website to show the world what kind of devastation these antibiotics are capable of.  I never intended to write on the wall of pain because I always thought I would recover, and quite frankly in doing this it brings up more pain.  FYI –  this is a long post.  Don’t read it if you are newly floxed.

I’ll start with describing my life prior to Cipro.  I used to enjoy SO MUCH that life had to offer.  I probably had too many interests and activities.  Some of these were:  snowboarding, rock climbing, hiking the rockies, playing soccer with my daughter, (anything involving being active with my daughter), road biking, lifting weights and playing ice hockey many times a week.  I was in a few adult hockey leagues.  I also enjoyed trying to learn the banjo.  I was really into art.  I used to do pastel drawings but my main passion was sculpting and I had plans of retiring as a sculptor.  I was in pretty good shape.  I was intelligent, sharp, and witty with a good sense of humor.  I was social.  I was confident.  I was generally happy.

I took Cipro in late December 2011 through January of 2012.  I was on 500mg twice daily for prostatitis.  I had never had anything like prostatitis before but I knew I wanted it gone asap.  After being on the medication for well over a week with no issues I started to develop pain in my forearms.  Initially this didn’t bother me and I attributed it to a long round of puck shooting when I went to skate days prior.  This forearm pain got worse to the point I started to wonder if it was the Cipro.

I started to google info on my forearm issue and I ran across horror stories online about how cipro had “ruined” people’s lives.  That word “ruined” kept coming up in these stories and I couldn’t really believe it.  I had been a pharmacist for years and never heard of lives being ruined by fluoroquinolones unless it was torsades related.  I didn’t believe these people on the internet.  Their stories didn’t match up with the FDA approved package insert.  At that time I trusted the FDA.  I took the med a few more days with the idea that if the pain stayed or if it progressed I would quit the Cipro.  The prostatitis still hurt worse than the forearm pain.  What was the worst that could happen?  A torn tendon?  I woke up one day with achilles and right shoulder pain.  Ok that was a definite warning sign.  I immediately stopped taking Cipro.

My forearm tendonitis got worse but thankfully the achilles and shoulder pain went away within a day or so and it made me wonder if I had quit Cipro unnecessarily but I stuck with my decision.  Eventually my forearms hurt so bad it was difficult to open doors, wash my face and brush my teeth.  My forearms hurt like this for at least 6 months (to this day they have never fully recovered) but hey at least nothing like that crazy stuff on the internet happened to me… right?  Life went on and I completely forgot about Cipro.  I continued to be very active playing hockey, going on backpacking trips, hiking etc.  That summer I hurt my right shoulder doing pull ups but chalked it up to the fact that I hadn’t done them in awhile.

Near the end of 2012 I wanted to start working out again since I had quit for most of the year but my nagging right shoulder along with my still  recovering forearm tendonitis prevented me.  I finally started an intense workout program in March of 2013 after my shoulder felt better and that is when I noticed that my shoulders felt loose and crunchy.  I felt grinding and popping in both of them.  This is when the wheels started to fall off.  I had to quit working out not even a week into my program because of the sharp pain in my right shoulder.

It was also  in late 2012 and early 2013 that I started to experience anxiety and brain fog.  I had trouble focusing at work.  I really didn’t think too much of it.  I had shoulder issues and forearm issues but that was it.  Then in the summer of 2013 I developed knee pain.  Then in the winter of 2013 hip pain, along with dry eyes, dry skin, ringing in the ears, TMJ in my jaw and the occasional strange flash of light comet type thing.  I developed floaters.  In 2014 my autonomic dysfunction (that I had prior to all of this) got worse.  I started to feel like I was going to pass out or die when I exercised.  I started to feel more lightheaded and foggy at work.  I started to feel like I was going to pass out especially when I got in a tense situation that involved a lot of stress.  I started to notice a correlation with this brain fog with my coffee drinking (even though by this time I had intense brain fog all of the time).  I soon realized that I couldn’t tolerate coffee anymore.  I developed a fibrillating feeling in my chest that corresponded to feeling like I was going to pass out.  The lightheadedness and fibrillating feeling continued despite me quitting coffee.

In 2015 the pain spread to my hands.  I noticed that I could no longer play my stringed instruments because my hands would get so painful so quickly.  Mainly this was in my thumbs.  I could no longer sculpt because of this and the fact that my eyesight was getting worse.  I started finding it hard to read.  It seemed like parts of my vision were missing.  I went to eye specialist after eye specialist and they could find nothing.  I still have this problem.  For example I have to look at my wife’s right eye if I want to see her whole face.  If I look at her left eye part of the right side of her face is missing.  You would think this would show up on eye tests but it doesn’t.  It reminds me of the strange vision some people get with migraines.

In the summer of 2015 I had a little reprieve from some of my symptoms.  I got on my road bike and through pain I went on a few 20 mile rides.  I thought I was getting better so I went hiking with my wife and went many miles.  After this hiking trip my knees were never the same.  They have since become loose with some strange popping.  The backs of them hurt bad all of the time.  I feel like I can hardly walk a few blocks now without feeling some major pain and a swelling feeling.  In late 2015 I started on testosterone and glutathione injections.  (My testosterone levels were low for the first time in my life)  I developed some pretty severe hamstring tendonosis despite not being that active at that time.  Since last fall/winter of 2015 I have become inactive.  I do nothing physical anymore.  I feel like my body breaks down when I do.  The new addition to my pain, which has far surpassed my torn right shoulder labrum, both my torn hip labrums, my right knee torn meniscus has been my back.  I feel nearly constant back pain from my lumbar to between my shoulder blades.  It seems to be getting worse.  I feel like the glutathione and testosterone might have made me worse but I’m not sure.

I have been to many Dr.s, family drs, orthopedic surgeon, 2 rheumatologists, many eye docs, a neurologist, a regenerative medicine Dr.  I have had MRI’s, some of my brain.  I have had many tests which nearly all come up normal.  Nobody so far has been able to help me.  I failed a cognitive function test with the neurologist.  I have severe brain fog to the point of feeling like I have dementia at times.  I am no longer social as I have problems carrying on a conversation.  My mind blanks out a lot.  I have problems with word finding.  I even feel like I have to fight slurring my speech at times.  I have problems with typing now.  I used to type very fast.  I have problems with reading comprehension and find myself re reading things a lot.  I get confused often.  I feel like my mind plays tricks on me.

I don’t know why all of the information says that fluoroquinolone toxicity can develop as late as 6 months, or even many months.  It seems like it is still developing with me.  Nearly all of my symptoms came OVER A YEAR after I took this evil poison.  This whole thing has been so bizarre.  In a million years I could never have dreamed up a worse nightmare for myself.

People don’t understand what it’s like to be floxed.  People look from the outside and see normal.

What is it like to be severely floxed?  You wake up every day in a nightmare that you can’t get out of.  You wake every day in pain.  You become fragile and weak.  You injure yourself easily.  You feel 100 years old.  Your IQ feels like it is dropping by the day.  Your body creaks, grinds and pops.  You can no longer do any of the things that made life fun and enjoyable.  You no longer exercise.  You try all day long to find Dr.s, information on the internet, anything that will help you.  You spend countless hours on floxie hope, various facebook groups trying to find help.  You look into candida overgrowth.  Fluoride poisoning.  Leaky gut.  Mercury poisoning.  You become obsessed.  You become paranoid.  You think  “what other types of evil chemicals has man concocted and are they in my food, water supply etc”.  You read many studies on fluoroquinolones that don’t help you.  You cut out gluten.  You cut out GMO’s.  You try various diets.  You cut out anything that has antibiotics in it.  You eat only organic.  You can no longer go to a restaurant with your wife on a date.  You buy books.  You read them.  They don’t help.  You take 40 supplements a day to try to reverse this horrific nightmare.  You avoid people because your brain isn’t working.  You lose friendships.  You become isolated.  You find yourself crying at work or at random times.  You want to do fun things with your family but you can’t.  You can only watch tv and movies now.  You used to be the active dad that played soccer with her daughter and all of the other kids but now you watch.  You watch life go by from the sidelines.  You want intimacy with your wife but your body doesn’t always work like it used to and you don’t have the drive you used to.  You stop going to church because being social is too stressful for you.  You become forgetful.  You can’t remember things you did earlier in the day.  You find yourself falling behind on yard maintenance, things around the house, bills etc.  You feel like you are failing your family.  Mowing the yard is a workout and painful.  You can barely make it through the day at work.  You avoid contact with coworkers because you know your aren’t right anymore.  You become silent.  You aren’t funny anymore.  You don’t have a personality anymore.  People start to think you are weird, antisocial, lazy but really you just can’t think and you hurt all of the time.  You want to walk out of work, out of your life but you have bills to pay and a family to provide for.  You are anxious.  You are beyond stressed out.  You pray for healing constantly.   Eventually you start to pray for death, for terminal cancer, anything that has an end in sight.  Anything that will end this nightmare.  Anything that will end the pain.  You start to think about suicide.  You start to fight suicidal thoughts.  You are hanging on by a thread, every single day and most of the people around you have no clue.  You are no longer you.

This type of thing shouldn’t happen from taking an antibiotic 4.5 years ago but it did.  Sadly, it will continue to happen to others.  How many people (especially the elderly) are out there going through the same type thing but have no clue it was an antibiotic they took years prior??  The majority will be women and elderly because that demographics gets fluoroquinolones the most.

It won’t always be like this, the pain and suffering.  If you are fortunate to have good health, that won’t last either.  I have to remember that.  Inevitably our bodies will deteriorate to the point of death and then eternity begins.  I like to think that the real life will begin.

Revelation 21 :

Then I saw “a new heaven and a new earth,”[a] for the first heaven and the first earth had passed away, and there was no longer any sea.2 I saw the Holy City, the new Jerusalem, coming down out of heaven from God, prepared as a bride beautifully dressed for her husband. 3 And I heard a loud voice from the throne saying, “Look! God’s dwelling place is now among the people, and he will dwell with them. They will be his people, and God himself will be with them and be their God. 4 ‘He will wipe every tear from their eyes. There will be no more death’[b] or mourning or crying or pain, for the old order of things has passed away.”

5 He who was seated on the throne said, “I am making everything new!”

I struggle to have hope for this life but what keeps me going is my amazing wife (who I’ve only been married to for two years, she’s been through so much with this), my daughter and most of all my faith in Jesus Christ as my Savior and thoughts of the afterlife.  If you don’t know the good news about Jesus Christ contact me through Lisa if you want to learn.  If I didn’t have these in my life I would be 6 feet underground by now for sure.  I would have taken my own life.  I understand why this class of medication has a fairly high suicide rate.  There are worse things in life than death.  I continue to pray for a miracle because I do believe in that sort of thing.  Hopefully, God willing, there will be healing in this lifetime.  I also look forward to the next life where there will be no greed driven corruption that destroys other people’s health, quality of life, relationships, and families for the price of a prescription.  The drug companies and the FDA have known about these quality of life destroying reactions for years and years but didn’t warn us adequately until this year, and still the warning isn’t good enough.

** The story above is truthful, accurate and told to the best of the ability of the writer. It is not intended as medical advice. No person who submits his or her story, nor the people associated with www.fqwallofpain.com, diagnoses or treats any illness. The story above should not be substituted for professionally provided medical advice. Please consult your doctor before trying anything that has been mentioned in this story, or in any other story on this site. Please also note that people have varying responses to the treatments mentioned in each story. What helps one person may not help, and may even hurt, another person. It is important that you understand that supplements, IVs, essential oils, and all other treatments, effect people differently depending on the millions of variables that make each of us unique. Please use appropriate caution and prudence, and get professional medical advice.

James’ Story – Life After Levofloxacin Poisoning

/ Lisa / 27 Comments

2016-09-02_01-53-36-1

My name is James and I wanted to share my the experiences that I’ve had over the past two years and eight months, since taking 5 simple doses of levofloxacin 500mg pills.

If I wrote a story of my life prior to January 7, 2014 it would look like this:

I am 34 years old. I have a busy life. I’m married to my wonderful wife of 12 years and have a 9 year old daughter and a 5 year old daughter. Between working full time as a construction engineer, running my girls to girl scouts and dance, playing on a men’s softball team from May through September, being a volunteer firefighter, and being active in my community, I leave little time for myself. However, I have the energy and mental awareness to pull this all off and live a happy life. I don’t eat the very best diet, but I try to balance it out. I ride my bike as often as I can – usually for 18 to 20 miles every other day. I do situps, pushups, jumping jacks, and stretches every day. I have toned muscles, and am fortunate that I have been able to be in decent shape without really having to work out aggressively like others that I know. I like to go out with friends. I enjoy spending time with my family. We go camping and take family “mini” vacations a few times a year. Life is good for me. I have always had asthma, but it’s controlled with daily maintenance inhalers and has never prevented me from exerting myself.

I could go on and on about how great it was because it’s true. I was happy and healthy, and enjoying life.

The only major medical issue that I had in my entire life, aside from asthma, was that I was diagnosed with papillary micro carcinoma of the right lobe in my thyroid. This was found during a routine annual physical, which I always have done just to be sure that I am in good shape. I felt a little dizzy when taking the deep breaths while the doctor was listening to my lungs. As a result, he decided to to an EKG that was normal. He also felt my lymph nodes and there was nothing wrong there either, but he did notice a small lump in the right lobe of my thyroid. I had no history of thyroid cancer in my family, but he wanted to have an ultrasound done to check it out further. This happened in August of 2012. Between that time and December 2012, I had three repeat ultrasounds and two fine needle aspirations (biopsies where they stick a needle into your neck to collect a sample of the growths to be tested for cancer). Results were in, positive for cancer, and I had surgery on December 30, 2012 to remove the right lobe of my thyroid as well as the isthmus (the center connective tissue that joins the left and right lobes). The surgeon didn’t notice and other lumps and tested what was removed to triple check that it was, in fact, cancer.

Good news for me! Cancer was gone and my thyroid levels were not affected enough to warrant supplements. I was healthy again. I weighed about 235 pounds and it was mostly muscle with minimal fat.

Back to my current reality:

I experience confusion or clouded thoughts. I forget things a lot. My joints ache and pop all the time. I have flushed skin and rashes all over. I have IBS with diarrhea. My muscles ache. I am not social. I do not enjoy volunteering in the fire company, and have not been active with them for about a year and a half. I quit softball. I don’t have energy to play with my girls, who are now 12 and 8 years old and need a dad that can be active. My wife and I argue due to the fact that I just don’t have the will, strength, or energy to do just about anything. I’m not doing well at work, and most coworkers and supervisors notice it. I used to supervise a staff of my own and had that taken away from me due to my inattentiveness and disorganization.

I have low self esteem. I know who I used to be, and I am no longer that person. At least physically, and I a somewhat bitter about that.

How did this happen?

On New Year’s Eve, December 31, 2013, I was enjoying watching the New Year’s festivities on TV with my wife and daughters. We even stayed up until the ball dropped to watch the fireworks from our back kitchen window. It was a lot of fun, and we all went to bed feeling a little tired but happy.

The next morning I woke up to complete body aches and what I figured was the flu or maybe bronchitis. I spent the next 5 days laying in bed or on the couch before I started to feel better. I had a little difficulty breathing still and I figured that it was due to my asthma, which never bothered me before. Since it was a little concerning that my breathing felt a little labored, I went to an urgent care center (my doctor’s office was closed and the on call suggested that I go there if this was really bothering me).

At urgent care, after checking everything else out, they thought that my breathing sounded a little raspy when listening to my chest. They did an x-ray and found a small amount of fluid in my right lung. They said that it was pneumonia and that I needed an antibiotic.

I’ve heard of many different types of antibiotics before, and even had taken some for infections in the past. It was always septra, amoxicillin, or penicillin. When they told me that they were prescribing Levaquin (I got the generic version – levofloxacin), I had never heard of it. They told me that it was the “big gun” of the antibiotics and that I’d be feeling great in a few days. I was prescribed 7 pills of 500mg to be taken once daily, starting that night.

After three days I was already feeling great. My breathing was normal again and the other symptoms of the flu or whatever it was that I had were gone. I took the fourth pill and later that day I noticed that my head felt like I was in the “fog” so to speak. I took the fifth pill and that feeling intensified later that day and I also started feeling very weak. I decided that I was over the pneumonia and threw the remaining two pills out.

From that point forward, I began to have all of the feelings that I mentioned above: dizziness, confusion, pain all over, popping joints in my hands and feet, brittle fingernails and toenails, weight loss, rashes all over my body, irritability, mood swings, lack of interest in things that I normally enjoyed doing, etc. My wife and I would argue a lot due to this. I felt like I was becoming useless. I felt horrible and knew how it felt to feel good, but I didn’t feel good.

I went to see my primary doctor in mid February after these issues got worse. I weighed 204 pounds – which I hadn’t weighed in almost 20 years. I had diarrhea daily since taking the pills. I was weak and my doctor was suspecting that maybe I had some form of cancer or infection that was causing all of this. He sent me for every blood test known to man, and it all came back normal.

I went to see him about every other month, not feeling any better, but put weight back on and was up near 250 by July 2014. It was mostly fat now, not really any muscle tone. The repeated blood tests kept coming back normal.

Frustrated, I insisted that it was hypothyroidism since all of the symptoms seemed to fit and I did have half of my thyroid removed when I had cancer. Those tests also kept coming back normal.

Over the next two years, I insisted to him that I had never felt this bad until I took the levofloxacin prescription that was was given at the urgent care center. He dismissed it each time that I complained about it. Almost like I was insulting his family member.

It wasn’t until this past July, when I told him that I wanted another doctor to look over my history, that he sent me for a blood test for low testosterone. I was now 37 years old and low testosterone wasn’t even on my radar. How could I have low testosterone??

Surprise, my levels were as low as an 80 year old man. Another surprise, he now told me that he is suspicious that my low testosterone might be caused by damage to my pituitary glad and that the levofloxacin may have caused the damage. He apologized for not looking into this sooner, and also for dismissing my idea that it was an antibiotic that caused this. He is now looking into this with other patients who have taken similar drugs and have mystery diagnoses.

A lot of the symptoms of low testosterone parallel the symptoms of hypothyroidism as well as those that I’ve read that are caused by being poisoned by levofloxacin.

Today is August 31, 2016 and I am due to see my primary again on Friday September 2 to get my prescription for a testosterone supplement. If all goes as I’ve read, I should begin feeling better within a week or two. I’m really hoping that’s the case. I’m tired of being tired all the time. I want to feel like I used to. My family needs be back. My employer needs me to perform.

While I don’t definitively know if levofloxacin caused my testosterone to drop so low and make me feel like I do, I suspect that it did. I had never felt as bad as I do now until I took it and have no other risk factors that could contribute to this.

It’s been a physical and mental struggle for me and my family during the ordeal. I feel like they sometimes resent me, but I know that they love me and want me to get better.

I will keep you updated.

Sorry for the novel!!

-James P.

December, 2016 update from James:

I wanted to share some supplements that have been helping me to have enough energy to get more active. My dad introduced them to me, and he is an older man who still runs marathons.  These keep him going.

Hammer Nutrition is the manufacturer. The three that I’ve been using for a few weeks now are:

1. Premium Insurance Caps

2. Mito Caps

3. Race Caps Supreme

They are not quite life changing, but pretty close to it – considering how bad I’ve been feeling in general.

I’ve noticed more energy, less brain fog, less muscle fatigue and soreness, less frequent headaches, and slightly more productive/restful sleep.

The best is the energy and decreased muscle and joint pain/fatigue.  It’s allowing me to talk longer walks and actually work up up a sweat, and attempt to lose weight.

As for the testosterone, so far that TRT has produced ZERO results. My levels are actually lower now that I’m on it. These supplements at least get me moving the way TRT is supposed to.

Please feel free to share the info on the supplements. They are for men and women. I recommend them since they are the first things that have given me any hope or results in about three years.

March, 2017 Update:

I had another two rounds of blood work done recently.  My testosterone levels are still way below the low end of “normal” range.  Zero improvement even with doubling my dose and being on it for 6 months. Also, ALT levels were very high. My doctor attributed that to the very high levels of vitamin E in those Hammer Nutrition products (E being fat soluble and stored in the liver). I am back to taking standard daily multivitamins, vitamin D, zinc, magnesium, and now DHEA.  In the month that I’ve been on these, I actually better than I thought I would but I’m still not the person I should be.  The Hammer Nutrition products are working great for my dad and other people that I know, it just may be that people like me can’t take them because our bodies were “reprogrammed” and don’t process things like they should.

Some new news, finally, I am seeing an endocrinologist who will follow me for my thyroid, low testosterone, and (wait for it) pituitary glad.  Apparently, it’s possible that my pituitary gland was damaged (from levofloxacin?) and that could be causing all of my hormone and other issues that no one can explain. The endo will be testing my pituitary gland for damage and will help me out with that if it is damaged.

I never even thought of the pituitary glad, and now that I’ve researched it – it seems to make sense and could be the missing piece of my puzzle. It’s likely throwing my thyroid and testosterone levels off.

Time will tell…

Take care,

James

** The story above is truthful, accurate and told to the best of the ability of the writer. It is not intended as medical advice. No person who submits his or her story, nor the people associated with http://www.fqwallofpain.com, diagnoses or treats any illness. The story above should not be substituted for professionally provided medical advice. Please consult your doctor before trying anything that has been mentioned in this story, or in any other story on this site. Please also note that people have varying responses to the treatments mentioned in each story. What helps one person may not help, and may even hurt, another person. It is important that you understand that supplements, IVs, essential oils, and all other treatments, effect people differently depending on the millions of variables that make each of us unique. Please use appropriate caution and prudence, and get professional medical advice.

Perry’s Story – Liver and Pancreas Damage from Cipro

/ Lisa / 2 Comments

Perry

Ten years ago today I had a Liver Biopsy done that confirmed that I had a severe toxic reaction to the antibiotic called Cipro. A medication that should have never been given for a small bacterial infection that amoxicillin would have worked just fine for. Not only did this affect my liver but it damaged my pancreas. This is why I’m diabetic and have been for 6.5 years now. Just 3 days later, I was transferred from South Haven hospital and admitted to Borgess hospital with not only the liver issue but severe pancreatitis and between both issues I was given a very slim chance of making through that first night and those first few days. 17 days later I was released. I totally believe in prayer because of this. There was no way I should have walked out of that hospital alive and a couple of doctors flat out told me that. I know I get discouraged about things with my health these days and use that experience to reflect on. I still suffer from issues from that medicine. Diabetes for one but over the past 8 months I’ve had tests done that show signs of damage from chemo. I never had chemo, never needed chemo… cipro has products in it that is used in chemo. This is why I’m against cipro and other fluorquinolones. Unless it’s a life or death bacterial infection stay away from it. The damage it can do isn’t worth the risk for an uti or other small type of infections. I think it should be banned. It is for animals.

Anyhow on a brighter note, I have had my diabetes under control now for 6 straight years 🙂. I go in every 6 months to get my A1C checked. I was 7.6% when i was diagnosed with it. By the first 6 month check up i had it down to 5.9% and been running between 5.4% – 5.8% ever since. I only take one 500mg dose of metformin a day and the rest is diet. I can eat and drink whatever I want. I just carb count and offset with higher protein foods:). No matter how my legs feel or my back and at times can barely walk at least I’m winning the battle on the most dangerous issue I have. I just need to remember this everyday. But I’m still going to have my discouraging days but I need to remember when I feel like things couldn’t get any worse I’m only lying to myself. If I had uncontrolled diabetes it could get worse! Take care everyone.

** The story above is truthful, accurate and told to the best of the ability of the writer.  It is not intended as medical advice.  No person who submits their stories, nor the people associated with this site, diagnoses or treats any illness.  The story above should not be substituted for professionally provided medical advice.  Please consult your doctor before trying anything that has been mentioned in this story, or in any other story on this site.

Aaron’s Story – Cipro Toxicity

/ Lisa / 10 Comments

Aaron FQ Wall

I am finally ready to tell my story. On May 15th 2015 i was prescribed Cipro for a prostate infection. After the very first pill i had the worst insomnia i had ever experienced in my life. I used to think when you took medication the side effects were only temporary. How ignorant I was. I now also now know cipro is not a medicine, it is a toxic weapon of mass destruction that would probably be banned by the Geneva convention. The most sinister part of this poison is that for me the worst side effects came after the last dose. I began coming in to work late because i could not sleep well. One day i was eating my breakfast and 2 or 3 bites in i was literally sick and had no desire to finish it. My appetite was literally now non existant. I also had no thirst. Severe anxiety washed over me in waves. I got on the internet and started researching cipro side effects. What i read scared the hell out of me. This illness is degenerative and you will get worse for months or years before you get better IF you even get better at all. Thankfully I also found floxiehope and bought the fluoroquinolone toxity solution. I also read the Flox report cover to cover. I started suffering from severe chemical depression. The best way to describe chemical depression is “nothing you do brings you pleasure and you have no peace.” My heart began to race and palpatate. I literally thought i was dying. My wife was floxed at exactly the same time i was and was in a mental institution for attempting suicide. This is the first and hopefully only time my wife has ever attempted suicide. So other than help from my mother who is a saint and was very helpful. I was going through all of this alone. My son is nine years old, I hated for him to see me like this and I am sure it made for a bad summer for him. My legs hurt constantly. My joints were stiff and popped loudly. My mouth was constantly dry and i have braces. It is a very bad combination. I had not used wax on my braces since i first had them on but after cipro i had to wax them daily for months. My eyes were severely dry. My urine was and still is foamy because my kidneys are not recycling blood proteins like they should be. My skin was so dry it was peeling off in flakes like dandruff. I suffered sever tinnitus (constant loud ringing in my ears). My muscles twitched. I felt electrical shocks in my left shoulder blade. tingling in my lower back and finger tips. It always seemed worse when i was trying to fall asleep. I got a floater in each eye. I was seeing flashes of light and having blurry vision. I went to my eye doctor and he gave me that test where you look at a grid. The lines did not appear straight but were curved. This indicates optical nerve damage. I was refered to a specialist but never went since i figured it was just cipro damage and I did not think they could do a damn thing for me to fix it. I had brain fog so bad I literally wrote down every supplement i took and at what time and wrote down everything i ate and at what time. I had no appetite or thirst and a horrible memory so i had to force myself to eat every so often to survive. My muscles wasted away and i lost 30 lbs. in less than 2 months. After i urinated i had bladder leakage. I had sharp pains in my kidneys ( most likely cipro ripping holes in my nephrons on its way out. I could not stand up for any length of time without my constant leg and foot pain becoming more sever the longer i stood. I could not walk very long at all. I experienced what i have heard others call “wired but tired”. Wide awake yet exhausted mentally and physically. My hearing was hypersensitive and noises hurt my ears. My sense of smell was intensified. Women’s perfume would about choke me. I had a worsening of my existing acid reflux. Along with many other GI issues. I had tendonitis in my hands forearms and legs. I found Progressive Medical Center in Dunwoody Georgia and saw Dr. Malone who is awesome and knows about FQ toxicity. I recieved a Blood panel that revealed that my kidneys were working decent enough but my thyroid and adrenal glands were hit hard. My T3 was almost non existant. I received four Ozone UVB therapies. I would have had more but I did not really have the money and i also had to miss a day of work for each treatment. I am a department head for a small city and am glad i have that position. If my job was labor intensive i would not have been able to do it while going through my hyper-acute phase. I took a ton of different supplements the 2 that i felt an immediate improvement on were ASEA water and C60-OO. I took epsom salt baths very often. I read the recovery stories on floxiehope every day. I looked forward to my six month out point so i could evaluate myself and hoped i would not be severe. I have a water cooler and use Highland Mountain water. ( spring water) so i am not poisoning myself with flouridated water. I also use Tom’s toothpaste and Jason powersmile mouthwash all flouride free. I spent more time on the couch with my feet propped up than i ever have in my entire life. It seemed to reduce the constant pain in my legs. I watched a lot of Netflix. Six months came and I was thrilled at the results of my evaluation. With the exception of the floaters and foamy urine and im not sure about my adrenals or thyroid have not had another blood test yet, all of my other symptoms have improved or are completely gone. I was somewhere between mild and intermediate. It has been seven months now and the remaining symptoms are tolerable and i am hopeful that they will eventually be completely gone except for my floaters. floaters are permanent. I still suffer from foamy urine, a less reliable memory, minor tinnitus, minor and occasional foot pain. very minor and occasional neuropathy. more soreness than usual after excercise. No thirst. My appetite has returned but hunger feels different now. I just want to say thank you to everyone on this forum. Special thanks to Lisa Bloomquist and i would like to eventually tell my story on floxiehope. Special thanks to Bill Milligan. I related to your story thank you for sharing it.

** The story above is truthful, accurate and told to the best of the ability of the writer.  It is not intended as medical advice.  No person who submits their stories, nor the people associated with this site, diagnoses or treats any illness.  The story above should not be substituted for professionally provided medical advice.  Please consult your doctor before trying anything that has been mentioned in this story, or in any other story on this site.

David’s Story – 15 Years of Being Floxed

/ Lisa / 2 Comments

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

/ Lisa / 1 Comment

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

/ Lisa / 5 Comments

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.