*The following is an individual’s story of surviving fluoroquinolone toxicity. It is not medical advice. Please see the disclaimer at the bottom of the story. Thank you, and please be cautious with all treatments. 

Angela’s Story, written by Angela –

I am finally writing this and it has been ages that I’ve thought about doing so.  It was last year this month that my world was turned upside down for similar reasons as everyone else reading this; took five days of 500mg of Cipro twice a day for what was believed to be a UTI, even though a urinalysis was never done.  I was a 27 year old full-time college student and single mother of a beautiful 2-year old.  I wanted to be rid of the UTI so badly, since I’d had UTIs in the past and I thought I knew what I was doing, I kept taking the medication even when I began having pains in my foot, which traveled up to my leg on the third day.  I was ignorant and naive about the true possibility that an antibiotic could cause any harm past the usual side-effects.  I was OK enough to do all of my usual activities and still mentally clear for a couple of weeks after taking the medication, until the severe anxiety took hold.  I experienced depersonalization for the first time in my life driving to school.  I got through my test somehow and drove home in fear.  I took it easy for a couple of days, then went and tried to make it to a movie, but I’d already been traumatized and was still so in fear of what my physical body was still experiencing.  Something I could not control; this new pain I never felt before in all my 27 years of living.  I could not stop it, whatever was happening to my body, I could not stop it.  I told my boyfriend I couldn’t make it through the movie, so we went to my brother’s house and stopped off at Walgreens for some supplements I read might help me.  There, I experienced one of the most terrifying moments of my life, where suddenly every sound around became amplified ten-fold and my brain literally felt like it was going to explode.  I was shaking and ended up at my brother’s house, completely in-shock and petrified.  This was the beginning of my experience with Cipro.

What I have failed to mention, however, is that between the time that I experienced the severe anxiety and the time I was OK, I took the time to research what I’d done to myself.  I saw a video of a man literally going insane, which always one of my biggest fears as a person with anxiety since childhood.  I also read stories about people becoming disabled, losing everything, becoming bed-ridden…the worst possible things one could imagine were now running through my mind and embedded in my sub-conscious.  Before I experienced the depersonalization, I was remembering the video I’d watched of that poor man crying uncontrollably.  The worst part of all of this, was it was something I felt I did to myself.  Sure, the doctor never mentioned these horrible side-effects, but I could have stopped taking the medicine once I began feeling the pain.  I even asked my boyfriend if I should, to which he asserted I should stop.  I then asked another friend and he asked me to weigh the pain the meds were causing, between the pain from the UTI, and thinking the UTI was the worst thing to me (at the time), I continued the medication.  I truly did not believe that such a common antibiotic could do something as terrible as what those websites claimed it did.

I was at a loss…physically, mentally, emotionally…everything was now foreign.  My symptoms varied for months from TMJ, mysterious pubic bone and tailbone pain, tendonitis all over my body, strange burning sensations in my right ear, loss of appetite resulting in weighing 86 lbs where I was previously 106 lbs, feeling like I could not get enough air, sudden swelling of left arm, lower back pain, severe muscle weakness, shakiness, fast heart-rate, palpitations, severe anxiety resulting in depression, vertigo-like sensations, feeling of body rocking back and forth, and more. My world was now full of uncertainty and terror.  Terror half brought on by my own viewing and reading of the worst possible outcomes of the situation I was now in.  I found a website that boasted survival stories, however…it the only website that offered a possible positive outcome.  It was difficult for me to think it was possible that I would be one of what I thought to be the “few” lucky ones, but I had to believe somewhere deep inside me that I would be, just to continue.  I would go on like this for the next few months, in a literal mental fog.  During this time, I tried to go for a walk to the park with my friend, and ended up sitting on the bench in tears because, as I said to my friend, “I feel like I’m looking at a painting of my life instead of living it.”

At one point I needed him to sit in the bathroom with me.  To just sit there and look away, nothing else, while I showered…because I was terrified of even showering.  I was terrified of existing.  I remember looking at the world and it even looked different, it looked blurry and foggy.  I read up on every single thing I could, and read this was a mode the brain took when it was traumatized by severe anxiety.  It slowed down for the sufferer, and the only way to get beyond that guise, was to ignore it and continue living despite the disturbing, yet harmless, symptoms.  So, I did just that.  I fought, to get back to driving, grocery shopping, taking care of my daughter, going to school; all of these things were my goal.

I had setbacks…there was a time I was feeling a bit better physically and went to get a full-body massage.  The masseuse was rough, and that very night I truly thought I was going to die.  I had the worst nightmares I’d ever had in my life, as well as the most pain.  From my teeth to my toes I was in severe pain with my muscles twitching one right after the other sporadically throughout my body.  I was kicking myself for setting my recovery back unnecessarily.  I was also still accepting that I was now different…that my body could suddenly not even handle a massage.  When before, I passed the time by spending an hour burning 1,000 calories in a Krav Maga class and beating the punching bag past the point of blood on my knuckles.  I danced hours on end, without consequence.  I loved those feelings, and now I couldn’t get past a rough massage.  But I knew I had to look forward to get through this.  And one night, when what people call the “third eye” was suddenly tingling (while laying in bed with my mother and daughter ’cause I was too scared to sleep alone), God told me that I needed to show him how badly I wanted to recover, not just say it.  I’d spent the last three months barely walking, acting and feeling like the most fragile elderly person.  My 89 year old grandmother was leaving me in the dust.  I even looked different, painful acne all over my face, possibly in part to not using Pro Active anymore since I was afraid of the chemicals that everyone said would be harmful to me.  So, after all this, I finally listened to God.

He told me he would take care of me, if I showed him I trusted him by pushing myself.  And I began to.  I began to train myself to walk regularly again.  I also stopped going onto the internet so much, relying on other people, to heal myself.  I trusted in him and myself.  I had a bean and cheese taco from Taco Bell which sounds pretty funny to the average person, but to me, it was trusting in God and letting go of all those things I’d read that other people said would hurt me more.  I started living my life, regardless of how odd it now was.  All of these varying symptoms, I simply looked at as another sign that I was still alive.  The pain wasn’t debilitating, so I stopped acting like I was debilitated.  I began to give my daughter baths again (my family helped me so much with my daughter during this since I was a single parent), going grocery shopping, lifting light things, opening things, going outside, and finally…driving.  This was not without help, however.  I did not have health insurance, but I was able to go to therapy through a program at my college.  Although I was formally too frightened to do nearly anything, I went through the process to get into therapy because I knew I absolutely needed it.  My sister-in-law, brother, mother, and friend helped to take me to and from therapy, until I began driving on my own.  In therapy, we practiced exposure therapy.  My therapist brought in regular foods that others on the internet said would bring in more symptoms and be bad for me.  These small things were keeping me from living my normal life, not being able to enjoy regular dinners or lunches with my family, and our goal was to resume a sense of normalcy.  I went through with the therapy, even to the last of our sessions where I ate conventional meats (chicken and pork) which I was the most scared of.  It was difficult for me to even tell if I had a reaction because I was still feeling strange most of the time, but the important thing was that I did it and it was no longer a source of intense mystery and fear for me.

So now, I was driving, able to enjoy regular foods, going to school, and taking care of my daughter.  I realized at certain points that the fog was no longer there, or was substantially decreased.  The pain had also extremely decreased.  During this time, I moved into my own apartment with my daughter because on top of the Cipro event, the environment at my home was extremely stressful.  I lived with my mother and grandmother at the time, whom both were terribly invasive in my raising my daughter, and my mother wasn’t exactly the greatest supporter of my new health problems.  She didn’t understand and to her; you simply deal with it and get over it.  But I, I was falling apart.  I threatened to move to a shelter with my daughter as I felt I had no choice.  I was broken down and ready to give up but couldn’t for my daughter, so my mother gave in and got us our own little apartment.  I had to learn to be alone again too.  After therapy ended (because it’s a program where we see psychiatry students, when they graduate they move on) I was on my way to much better health.  Then my daughter gave me hand foot and mouth disease and I felt a lot similar symptoms as I had before.  By this point, I’d accepted many of the strange symptoms one feels after Cipro, however, and just dealt with them, mostly attempting to ignore them as usual.  Everyone around me saw me appearing “normal” so I could no longer really talk about the strange and troubling symptoms I was experiencing.  There were no tests indicating anything was wrong with me so I had no validation, and therefore, simply kept quiet about it.

Since I was still feeling better overall though (in comparison), I finally went to the clinic and got on a payment program my Mom’s hospital offers, which serves to act as a way to actually see a primary doctor.  The very next day I had women’s issues which concerned me, and so put the payment program to use and went to the GYNO ER.  I found out I had an under-active thyroid and now had to be properly diagnosed, and so got an appointment with my new primary.  Eventually she would find my thyroid was still under-active and prescribe me medication.

Though I was excited to be diagnosed, have some validation, and possibly resolve some of the troubling symptoms I’d trained myself to overlook, I was dealing with the fact that I was never going to be the old healthy me I used to be.  I still had to let that version of myself go.  This new me had to take medication every day.  I’d reveled so deeply in being physically strong and healthy, not reliant on any medications or anything, and that was no longer who I was.  I still have trouble dealing with looking forward and not being stuck on my old self.  But, I’m slowly getting better.  This was the first time I revisited the same time of year the trauma began last year.  It brought back so many memories and feelings I was not expecting.  I live with some of these memories every day, but without triggering smells or sensations.

I am still not back to the healthy person I was before this experience, but I am so very close.  I am world’s away from when this began, and for the first time, even before the Cipro, I feel happy.  I am grateful for everything I have, and have so much to look forward to since I feel as if I am beginning my life again.  I am the single mother I was before, the college student, the daughter, the sister, the girlfriend, and the friend.  My face is even clear and I have gained all my weight back and more. One big change is that I am also so much more empathetic toward those who have health problems.  I’d only lived one way my entire life; healthy and mostly happy.  I was extremely lucky.  I still am lucky, but now I have insight into the personal struggles that people go through on a daily basis, struggles that they don’t tell anyone about.  Those people are so strong and I feel a true closeness with them that I never felt before.  I will continue to empathize with others on a much deeper level than I could have ever done had I not experienced what I have.  I still have so much more to go for myself, and so much more work to do as I am still living with the mental and emotional trauma, but the difference is that I no longer give my future to others to make for me.  I make my own future, and whatever that brings, I know I will make it through.  And if I don’t, I gave it a damn good fight till the end.

This is a side-note that goes into more detail on the anxiety I experienced around food:

I have struggled with whether or not to say anything about this, but I really think I need to, regardless of any negative responses I may receive.

I’ve always had anxiety, since I was a little girl. I was able to live my life despite it, but it had its times where it controlled me way more than I wanted it to. Anyway, I’m saying this because my reaction to Cipro triggered the anxiety like nothing else before. Not only was I having a genuine physical reaction, but the anxiety was off the charts, probably as a mixture of the chemical reaction and pre-existing anxiety. This anxiety fed on the supremely intense fear from what was going on with me. And what was I doing at the time? I was researching and corresponding in this group and other Cipro support sites. It became sort of an obsession. And anything I read to stay away from that could cause me MORE harm became nearly a phobia without me realizing it.

After the worst of my reaction, I wanted to try my best to get my life back. I had to go to therapy just to start eating regular foods again. My therapist literally brought in Cheetos, cupcakes, potato chips with soy, tea (caffeine) and even regular meats. I was terrified this whole time. I didn’t eat them all at once, of course, but this was what my life had become. Not only did I have the true reaction to Cipro, but I was now dealing with this…separation between my old life and my new life. One that included all sorts of fears, from caffeine, to fluoridated water, to sugar, to dairy, to soy, to gluten, to shampoos, conditioners, conventional meats, and many other formally daily foods and items.   I lost nearly 20 lbs in the beginning of my ordeal and I do believe some of it was from fear of eating ANYTHING. And truly, in the end, I do believe that the stress and anxiety from what I was eating caused me MORE harm than any of those things I was avoiding would have.

I am NOT saying this is the same for everyone. I am sure some people truly have reactions to these foods, and maybe some people don’t have the anxiety I have and can control their diet without it becoming a full-on phobia like mine did, but if there’s ANYONE out there like me, you have a really good chance at being normal again. And you may be more normal now than you realize. I realized that I was feeling like crap at the time all the time anyhow, and some Cheetos and Kit-Kats weren’t going to kill me. They weren’t the Cipro.

I eat regularly now, but I’m still working on non-organic meats and alcohol. I am still too scared to try them, but plan on trying after the holidays. All I was fighting for after my reaction was my “normal” life back…and I am SO much closer to that now. During Turkey-Day, I will be able to sit and enjoy that big meal with my family, (just taking my own organic turkey). I still eat mostly organic and even healthier than before, and for that I am thankful. This group truly can be helpful at times, but I only write this as a warning to some who may fall as deeply as I did and not even be aware of it. Do not live your life based on how someone else’s life is. We are not all the same. Please, take care of yourselves and enjoy the little things;  we’re here for such a short time. I wish everyone healing and happiness. Take care and thanks for reading.

I apologize if this offends anyone, this is truly not my intention.

 

** 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 Floxie Hope, 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.