In early March of 2016, I was 28 years old, working full time, and recently engaged. I woke up one night with excruciating pain in my right testicle, so I called my doctor the next morning, and scheduled an appointment to meet with a urologist. I had acute orchitis, and was prescribed 2-weeks of cipro, 500 mg, taken twice daily.
The orchitis didn’t go away after the first course, so I was prescribed another two weeks of antibiotics- same dosage. At the beginning of the third week, my body went completely haywire.
I developed muscle spasms in my forearms and lower back. I had shooting pains like knives going up and down my spine that would last for hours. I would wake up in the middle of the night short of breath with intense chest pains. With no prior history of anxiety, I would have intermittent panic attacks, and I was completely on edge at all times. It felt like my fight or flight response was in high gear.
For several months thereafter, new symptoms kept emerging. I did not experience the muscle or joint pain that many on this site have described, but I did experience a host of psychological symptoms. I had severe insomnia. At night I would try to fall asleep, but my body refused to relax. As I would start to doze off, my body would snap awake.
For the first few months, my gut was also a mess. I was nauseous all the time, vomiting, and had constant diarrhea. I lost 25 pounds. I went from being a lean 185 to losing most of my muscle mass and dropping to 158 pounds.
My worst symptom developed about 3 months in. I developed severe dyspnea. I was sitting at my desk at work, and suddenly my breathing felt labored. When I inhaled, it felt like I couldn’t get enough air into my lungs. I used to be a marathon runner, but my stamina and ability to do any physical exercise was completely destroyed. I went from being able to run 5-6 miles daily to not being able to walk up the stairs.
My dyspnea was unrelenting. I felt like a stone had been placed on my chest. At its worst, the breathing issues prevented me from sleeping for 3 days straight. I was out of breath sitting at my desk or lying down. Imagine trying to fall asleep when it feels like someone has a pillow pressed over your face at all times.
The dyspnea lasted for 2 years, and it has only started to abate these past 10 months.
I also developed tinnitus in both ears. I don’t remember when the ringing started, but in the grand scheme of things, this was the least of my concerns. Struggling to breathe and not sleeping was my primary focus and consumed most of my time and energy.
On my wedding day, I was out of breath at the ceremony and reception. I had to sit down or go to the restroom to take breaks so I could suck down air and catch my breath. I barely made it through my first dance with my wife. It felt like I was living my life 23 miles into a marathon.
I can only describe my experience as suffering for 2 continuous years. I realize that there are many others here that have had it much worse, but it was still hell, and i wouldn’t wish it upon my worst enemy. There were periods where I wanted to give up. I considered quitting my job. At several points, I considered taking my own life. Every day was a waking nightmare.
What kept me going was the hope that I would get better. I was still young, and i believed that with time, things might improve.
I spent hours and hours reading scientific articles and testimonies from fellow floxies. I scoured the web for tips and tricks to aid in my recovery. In all honesty, most of what I found only contributed to my anxiety. It felt like a black hole. There were so many stories out there of people not recovering. I got off the web. I told myself that people who recover just want to put this behind behind them, so we rarely hear the good stories.
I also saw as many doctors as I could, but none of them could figure out what was wrong with me. I was cleared by throat doctors and pulmonologists. All tests came back negative. Bloodwork was stable. There were no issues apparent on my MRIs or X-rays. In hindsight, I wish I had seen a neurologist. I believe my nervous system was probably damaged by the cipro. I’ll never know for sure, but this could have explained the difficulty breathing, chronic insomnia, and anxiety.
After being dismissed by dozens of specialists, I decided to take control of my own health. I realized that no one was going to help me, and I was tired of being passed off as a hypochondriac. My family would attest that I was in great shape my entire life, but the specialists didn’t know me before I was floxed. They didn’t understand that I had run multiple marathons and had no prior history of anxiety, yet here I was, struggling to inhale and having daily panic attacks.
When I took things into my own hands, I started by changing my diet. I cut out alcohol and caffeine, as these both made me feel noticeably worse. I also cut back on sugar, and focused on eating more healthy foods.
For a while, I tried some of the supplements that others have listed on this site (CoQ10, magnesium, etc.) but I didn’t see any noticeable benefits, so I gave up on these after 1-2 months.
The one thing that helped me the most was time. For those reading this, I realize this might not be the answer you want to hear. When I was at my worst, I wanted something that could instantly fix me and make me breathe better.
My gut healed after about 6-7 months. I started putting on weight again.
My chest pains and panic attacks stopped after about 1.5 years. The insomnia also started to lessen, and I started to get 3-4 hours of sleep a night.
At about 2 years out, the dyspnea started to lessen. I started sleeping 5-6 hours a night. With sleep, I noticed that my mornings were better. I could feel my body recovering more and more. The dyspnea would return in the evenings, but each day was better than the last.
I would like to add that sleep was also essential to my recovery. When my anxiety had subsided sufficiently, I started taking melatonin to help me sleep. With time and sleep, I noticed that each day was incrementally better than the last.
At the 2 year 3 month mark, I started exercising lightly. I would walk our dog for longer periods and I started lifting weights.
The past 6-7 months have been noticeably better. I run 4 times a week now for 2-3 miles. I lift weights twice a week, and I work on my core strength and practice breathing exercises.
At 30 (nearly 31), I would consider myself healthy now. I am not the athlete I once was, but the fact that I am running at all is a truly gift. I can also sleep 8 hours a night. My dyspnea is all but gone, and that is the greatest blessing. Now that i can breathe, I feel like I have my life back.
This past December, my wife and I visited Puerto Rico with our friends and I didn’t feel restricted or sick. I was able to hike and surf and explore the rain forest. If I had tried to go on vacation a year ago, it simply would not have been possible.
I would like to add that sometimes I still have trouble breathing when I am over-tired or stressed, but this is manageable now, and it is more of an annoyance. I know it will pass after a good night’s sleep.
Looking back on everything, I remember being so angry with my doctors and myself for taking medication that ruined my life. With time though, that anger subsided. I stopped caring about being angry, and just wanted to find a solution that would make me better. When my family doubted me and the doctors failed me, I had to rely on myself to find a way out of this hell.
I learned that I can endure a tremendous amount of pain and discomfort, and I think in some ways that made me a stronger person. I also have more sympathy for others with chronic illnesses, and am so appreciative of where I am today. I also recognize that I am one of the lucky ones. Had I taken cipro when I was 50 or 60 years old, I think my recovery would have taken substantially longer, and I might have faced a whole host of other symptoms.
I would like to say to those of you struggling now, I know what its like to to feel like your body is not your own, to wake up and see yourself as a shadow of what you once were. I also know that the dark times can seem hopeless, and that you might feel like there is only so much suffering you can endure. Please, persist. No matter what. Your recovery won’t be linear, but you will get better. New symptoms might emerge, but always appreciate when some aspect of your body is improving. When things seem intolerable, try not to get sucked into sadness. Do something. Get up. Do at least one thing every day that will help your body feel better and expedite your healing.
Be patient. Stay strong. Focus on what makes you healthy and happy, and record your progress. The ability to see where you’ve been is invaluable. It will help on your bad days to look back and see how far you’ve come.
I hope this helps.
** 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.
Wow I can’t believe you have the breathing thing too. I am awake right now because I feel like I can’t get enough air through my throat . Did you feel like that too ? So glad to hear it goes away at least .
can someone send me the books’The Fluoroquinolone Toxicity Solution and “The Floxie Food Guid”‘ .in our country we dont have the permission to use credit card to buy on internet and i dont have money .please help me this my email
elmouelhimohamed@gmail.com
I just want to jump in here (to give some hope). I am not a FQ survivor but a Mefloquine (anti malarial) Survivor. 6 years out. You can say it is the cousin drug of FQ. Also black box warnings on it as the FQ. Kyle, your story sounds like mine. I became an insomniac after 48 hours of 1 Mefloquine (aka Lariam) pill. I had tinitis for 2.5 years, it healed. My anxiety was sooo bad and severe depression. I had severe racing thoughts. became delusional that if I closed my eyes I would see constant faces like negatives of a photo, type images. Faces so sad and weird, that you cannot believe a human brain could create these images. Thats why I say delusional and not hallucinating it, when I opened my eyes it was gone. Dizziness, terrible deep feeling of fear constant, suicidal, blurred vision, rocking head and body, tremors, sore body, and stabbing pains, toes were dead for a year, burning skin, bad fatique, tingles everywhere, numbness, breathing bad bad, so bad i had to use ativan and sleeping tab and valoids not to vomit. The strongest sleeping tab gave me 6 hours. For about 5 months sleeping tab, then forced myself off it. 7 months on ativan and tapered down when i had the slightest feeling of feeling a bid better, a hell on its own to get off it, very addictive. I will not suggest anyone to use these drugs. Anti depressant made me worse so couldnt use that. I was crying like a baby for months. Took me 18 months to get to 7 hours sleep. Brain fog, severe forgetfullness , could not follow conversations, couldnt judge time, i would thought it is 10 in the morning then it is 2 pm. Lost 13 kg the first 2 months. Depression and doom feeling 2.5 years. I would say 3 years to 80 percent healing. but then i felt okay that i could cook myself some veggies, i started eating clean no gluten, no dairy no soy, even no grains, no sugar. a lot of salads or cooked veg and some meat and fruit (Terry Wahls Protocol level 2) sort of. That gave me a more stable energy level. So 2 years were good. BUT now I am going through the menopause phase, severe fluctuating hormones, I am 51 now, so anxiety is back. But they say it gets better. So I will update everyone after this transition.
wanted to add nightmaires stopped at 18 months out and the first year I had diarhee for a year!
Dear Ursula,
after Cipro i saw alot of ugly faces when i closed my eys. It was like hallucination but when i opend my eys these faces gone.
Panic attacks and insomnia, brainfog and depression, floaters and lights, palpitations… where my daily experiances.
I will be 22 months out in some days and these symptoms are now better.
Can you tell me how long it needed to go out of brainfog?
i lost 13kg in 2 months post mefloquine pill
Thank you Kyle, (and Ursula) for your meaningful testimonies. Now 69, I was hammered in 1996 with 60,000mg of Cipro . I had to train myself much like Kyle and now, after 8600 days of wishing for a breakthrough I manage to engage in activities, especially cycling that give me joy. The other vital tool is LOVE, which I am surrounded by so even though I was victimized, I am still happy to be alive. I will never give up seeking wellness. Please believe in yourself and provide as many beneficial precursors as you can into your diet, and most importantly reconstruct your life with meaning in spite of your pain.
Dear Kyle, Please consider sending your story to CBS 60 minutes. 60m@cbs.news.com
Our story needs to be heard
Congrats on recovery. I have the same timeline as you with eerily similar experiences. You’re a little ahead of me still but you’re a little younger than me. I’m starting to believe I’m going to survive this and it’s truly amazing that this level of suffering is something we can endure. I would never have thought this could be real. I will say it’s doubtful any neurologist would have helped you. I’ve seen 7 and gotten the same thing virtually from all of them: nothing wrong. Dysautonomia maybe could explain the breathing. How is your tinnitus?
It’s nice to see recovery. Here’s to more.
Recovery or REMISSION? Reading up on and learning the truth about Fluoroquinolones I always have to ask is there really such a thing as “recovery” or is it (very welcomed) remission of the problems caused by Fluoroquinolones? Is the proper word being used when the symptoms of Fluoroquinolone poisoning subside for many?
Do you still have tinnitus?
So glad you are better….a few years ago I was damaged found this site and was able to recover…You all need to remember this if you go back into the Hospital or to the Doctor….tell the NO Fluoroquinlones…..The second round could be even worse…They can give you something else NOT in that group….The Hospital will put a red band on my wrist it says NO Fluoroquinlones…I am just trying to warn all of you….
I am so grateful To hear Your story of success. I too, was blocked two and a half years ago I won’t reiterate the details that you named because mine were very similar. Miraculously this past Monday. I woke up and Felt like doing thanks. I think the worst impact on me was my cloudy thinking and lack of initiative. I didn’t care about anything for the past 5 days. Though. Still not symptom free, my brain has returned. And I can think through things. I have the initiative to take on a project to the end. My medicine was leviquin prescribed for a stomach problem called h PYLORI. I had in the past taken flora. Family with no problem I used to have a lot of UTIs, No negative reaction to them until I took the levaquin.
I’m Happy for us both. It becomes quite tedious to have doctor after doctor tell you that it wasn’t they? Didn’t know what it was period the doctor that finally validated that I had been floxed Attributed my symptoms to the medication. I asked him how he knew? And he said he had seen cases like this before and that I did seem to be getting better in tiny baby steps. I wish I could say one thing that made me better. But the only thing I can think of is the grace of God.
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