Fluoroquinolone Toxicity and CCI Surgery

March 3rd 2021, my life changed forever. It was the last day I lived as a 24 year old full time daycare teacher and photographer, in love with life, the last day I truly knew peace— and everything came to an utter screeching halt, and the biggest nightmare I could fathom became my life.

I had been having stomach issues, and was prescribed two antibiotics, a Fluoroquinolone antibiotic called Cipro and another antibiotic called Flagyl. After 3 days and 12 pills, I started to exhibit strange symptoms. I took the last dose of the day while at work, and I started to feel faint through my shift. By the end of my workday I was very out of it, and I started to vomit on my drive home— and this is when the horror began. My legs started to tingle and burn, my face felt like it was melting off, and all of the sudden it felt like my diaphragm froze and I lost my ability to breathe. I started to black out at the wheel of my car— and at that point, I felt like I was genuinely dying. I rushed into the ER, and they said it was an adverse reaction, and once they left my system, I would be okay— which couldn’t be further from the truth.

The symptoms weren’t going away. They kept building. I had to quit my job that I enjoyed more than anything. I weighed 88 lbs, and couldn’t stomach anything. My legs felt like jello and walking just to the bathroom was a trek in itself. I knew something wasn’t right and I began to research what had happened to me, and that led me to horrifyingly discovering what “being floxed” was. I had Fluoroquinolone Toxicity. Literal thousands of stories of people ending up in wheelchairs, people who went blind, ruptured tendons and never walked again, had strokes, heart attacks, people who committed suicide due to the extreme mental affects, individuals who traveled to Switzerland for doctor-assisted suicides to escape the pain— all from these medications. Sadly, I’ve even lost two of my friends I met through the floxed groups to suicide when their pain became unbearable.

FQ antibiotics as well as Flagyl have multiple FDA black box warnings as being neurotoxic that I was not made aware of— nor was I ever supposed to be administered these class of medications due to my known pre-existing issues (POTS, MCAS, and especially my underlying connective tissue disorder called Ehlers-Danlos Syndrome)— as Cipro has black box warnings on destroying connective tissue.

The damage that started to accumulate was shocking, and it didn’t stop there. As time passed, new symptoms appeared, and it not only worsened my pre-existing issues, but started to affect my already compromised connective tissue due to EDS.

It gave me insane tendon and joint pain, left me with severe breathing problems (failed pulmonary functioning tests but they can’t find the cause), nerve damage/neuropathy, extreme and overwhelming fatigue, cognitive issues, derealization/depersonalization, damaged eyesight, insomnia, vivid nightmares and every morning awakening with intense panic attacks, head pressure/vibrations, brain on fire sensations, myoclonic jerks, improper adrenaline release causing panic in the middle of the night, muscle weakness with muscle loss/atrophy, joint pain, episodes of being bedridden, unexplained weight loss, digestive issues, nausea, food/chemical sensitivities, vertigo/vestibular issues, akathisia, extreme anxiety and depression, and as of late— straightening and instability of my cervical spine causing painful spasming/ and dystonia of my neck, along with a myriad of accompanying horrible neurological symptoms that are genuinely unbearable.

Doctors have been of no help, won’t admit their wrong doing, or simply say they cannot help me. Even my primary care doctor at the time simply told me, verbatim:

“It’s obvious that you’ve been neurologically affected, but there’s nothing I can really do for you. Learn to cope with it.” And as someone in their mid-twenties, the sudden loss of life and being primarily homebound/bedridden left me with severe PTSD, and I actually had to check into inpatient psychiatric care twice— mourning my old life of who I used to be, and suffering with strong ongoing suicidal ideations.

Being floxed has left me with substantial medication sensitivities where I can’t take NSAIDS, steroids, pain relievers, or any type of pharmaceuticals or even OTCs without the chance of a reaction or worsening of symptoms— which leaves me with no relief, and the only hopeful options left are holistic/integrative practitioners and therapies— as they are the only doctors who will spend the time to look deeper into your body’s functions and run tests that typical doctors won’t care to. Sadly they are not covered by insurance and unfortunately expensive.

For my cervical instability, it’s a very concerning condition and where most of my neurological symptoms are stemming from. Cranio-Cervical Instability (CCI) is incredibly dangerous and detrimental if left untreated, and it’s progressed rapidly over the last month with terrifying symptoms. I visited Ft. Meyers to a doctor who is familiar with CCI and ran a series of tests. 

 AFTER I WENT TO THE CCI SPECIALIST: The Verdict is in— I included my results, but long story short: •I have severe instability of my c1-c2 (Atlanto-axial Instability). •I have instability of c2-c6 (Cervical Instability). •Bilateral TMJ instability. •Severe instability of most joints (EDS, which I already knew). •Vagus nerve degeneration adding to my anxiety/fight or flight, stomach/GI issues, as well as my breathing issues. •My pupils are overdialated causing my light sensitivity. •Build up of fluid and pressure in my eyes and brain (Intercranial Hypertension, elevated intraocular pressure, swollen optic nerve sheaths) causing my vision loss. •My vertebral arteries are kinked and my jugular veins are completely compressed. •Reversed cervical curve (my neck curve is lost and now angling the opposite way). They added to my chart that they’re aware of fluoroquinolones and how it had a play in the destruction of my C-spine, and for the first time in my life I feel completely validated. Literally cried. I am an easy surgical candidate for an occipital-c2 cervical fusion, but with not having insurance it is really rough— I will have to wear a cervical collar to stabilize my neck while trying to restore my cervical curve. I had upright MRIs which confirmed CCI as well as the ligaments holding up my head being laxed and unsupportive of holding up my skull. They also found a 5mm Chiari Malformation. 

I will need neurosurgery. I am trying to afford getting to one of the only few neurosurgeons who are experienced in cervical fusions/chiari decompressions to help save my life. Most do not take insurance so my surgery will have to be completely out of pocket. Most cervical fusions range from $50,000-$150,000, not including pre-op tests, hospital stay for recovery, etc.

I have no idea where mine will range from until I’m able to visit the neurosurgeon and see what levels need to be fused. I’m trying to travel to one as soon as I can to hopefully save myself from sustaining a stroke, incurring permanent damage/more disability than what has already occurred, and hopefully just get a little bit of mobility and my life back. Humbly, I admit I will need some help getting there. I’m only seeking relief to make this load a little lighter, as my mental health is breaking under the incredible weight of so many overwhelming symptoms and my body failing me. I want to see my nephews grow up, and most of all— I just want to feel peace again.