Andrew’s Story – Life Devastation from Cipro

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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

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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.