Welcome to my Avelox Floxing story. Firstly, 1000 thanks to Lisa and all the contributors to Floxie Hope: your kindness and advice has eased me through the worst of the FQ trauma.
I’m still finding my way back to full recovery, if that’s possible, but I’m sending this out now because I’d like to hear back from others affected by Avelox. I don’t see many here; I guess it isn’t prescribed as often as other FQs. I’ve homed in on visual and neurological issues, because I think they’re pronounced with Avelox. I’ve also commented on interactions with other pharmaceuticals and dietary protocols I was using around the time I was Floxed.
The usual caveats apply: I’m not a doctor, none of what follows is medical advice, what helped me might be injurious to others, and consultation with a qualified doctor should always accompany any course of treatment.
Here’s my pre-Flox background. Last year I had a cancer scare, and major intestinal surgery. Post-operative scans – MRI and PET-CT with Fluoride-18 – showed no cancer cells. Chemo seemed like overkill, and also problematic given an underlying health condition, but with cancer in my family I wanted to avoid recurrence, so, under the supervision of an oncologist I opted for a new prophylactic anti-cancer protocol: 5 re-purposed drugs that exploit several idiosyncrasies of cancer metabolism.
These well-tested pharms – an NSAID, a diabetes drug, an anti-parasitic, an antibiotic and a statin – have few side effects and could be taken on a permanent basis. Unfortunately the statin, which contains Fluoride (F) sent my liver enzymes ALT and AST soaring. I was advised to stop taking it for a while before being Floxed earlier this year. Otherwise I was doing well, after a radical nutritional overhaul. I’d gone keto (no sugar, no alcohol, low carbs) and taken up 8/16 daily intermittent fasting.
After six months I’d almost recovered to full strength, and all my blood tests were fine, with ALT and AST returning to normal levels. But in March 2019 I caught the worst flu I’ve ever had and started coughing up chunks of lung. I visited a pulmonologist who diagnosed severe double pneumonia: my C-Reactive Protein (an inflammatory marker) was 351 (it should be below 5).
He sent me straight to hospital, where, without any warnings about side effects, I was given 2 pint-sized I.V.s of Avelox over the course of a weekend. The drip bag had a weird yellow-green glow: it looked radioactive. I wasn’t concerned: I’d never reacted badly to antibiotics, and associated them with fast recovery.
As the Avelox seeped in, I noticed something strange: all the furniture around me was taking on a deep pink outline: magenta, like the print process colour. Then everything in my visual field began to seethe and crawl with it, bursting out into precipitation as if a printer cartridge had exploded in my head. I was scared, but the colour storm subsided. I closed my eyes and tried to sleep.
A mesmerising show unfolded inside my head: an array of mathematically precise artefacts, all magenta-coloured – glossy, curved, sinuous and spiky – displayed on fine rotating spindles. Some had wave forms; others resembled double helix structures. These pulsating, spinning columns, with the texture of whipped cream, built up and presented, rotating, from all angles. There was also a granularity to them, as if I was seeing them at the cellular or atomic level.
I also saw a 3D grid consisting of lines that drew themselves, then curved continually inwards on either side of a central vertical line. It seemed like some internal locational device. Some of the objects appeared right in front of me; others whizzed past on all sides, blurring to create a tunnel effect like the penultimate scenes of 2001: A Space Odyssey. I wasn’t sleeping. I couldn’t: the images were too compelling.
The artefacts then slid away into oblivion, like pink paint smearing down a window. There was a finality about it, as if they’d been lost forever. An authoritative figure appeared, like a circus ringmaster or MC. He was dressed in a black, shiny outfit: slick, cruel and creepy.
I was ushered into the arched ‘Brain Lounge’, which seemed to be fitted inside the top of my skull, lined with soft, shiny material with brain-like folds. The place was packed with beautiful, geometrically perfect creatures – animals, humans, mixtures of both – vivid, glowing. There was an exultant atmosphere – a Gatsby party – even a carousel.
Then I slept and had horrific nightmares, one with a rickety rollercoaster filled with my own chopped up body parts: intestinal viscera, eyes ripped from their sockets. The MC insulted me, paraded my failings, told me I was worthless and cried, as the rollercoaster rattled to a halt, leaving my guts swinging:
“You can’t Karma.”
I woke up in a state of shock. I tried to tell the doctor what had happened, that I’d witnessed some kind of cerebral loss, but was made to feel insane and decided to keep quiet. I was scared to take the next dose of Avelox but thought if I didn’t the pneumonia would continue. That time around I didn’t hallucinate with my eyes open. I was given a Dormicum tablet at bedtime which made me less anxious, but I didn’t sleep.
When I closed my eyes, the ‘magenta’ show continued, then petered out. The spindles fell from view, then, ominously, there was complete blackness, followed by surges of cyan (print process blue) and yellow, then blackness again. It was as if the inks of my Mind’s Eye – whatever I see with eyes closed – were running out.
Blood tests the next day showed that my CRP had dropped to 111: low enough for me to go home. Exhausted, I tried to nap but couldn’t. I’m used to drifting off by thinking random thoughts which materialise as characters and landscapes in my Mind’s Eye then become dreams. But when I tried to project images forward from my brain they formed shapes then crumbled into pixels, leaving white, sketchy, rapidly-collapsing outlines. By then, my Mind’s Eye vista was like the aftermath of a forest fire: grey pixellated earth, twisted, blackened stumps and a lazy swirl of grey sky with pale washes of cyan, yellow and green. There were also glaring white patches that would make sleep difficult. I knew I’d need soporifics that night.
The local pharmacist couldn’t offer anything stronger than 5-HTP. Having taken 2 tablets and managed to wander into sleep, I had bright, optimistic dreams featuring a cartoon character, sparking like the Absinthe Fairy. Strangely, the colour scheme was limited to shades of cyan, yellow, green, black and white: the magenta had gone. The next night I took another 2 tablets, which provoked firecracker displays, but then the cyan and yellow fizzled out and blackness descended: my Mind’s Eye, usually teeming with life, had been blinded. I certainly couldn’t sleep after that.
The next day I noticed that my regular vision – always 20/20 previously – was blurring and doubling. I visited an orthoptist who ran me through a series of tests then dilated my eyeballs and photographed my optic nerve, revealing a v-shaped cleft characteristic of a severe and sudden swelling event (see photo t the top of this article). Concerned about optic neuritis, which can lead to blindness, she sent me to a neurologist for further testing, as well as recommending an MRI scan and a course of corticosteroids.
I saw the neurologist 5 days later. He assessed me with simple tests (revolving striped drum; fingers moving in front of the eyes; walking up and down) but couldn’t find much wrong. He wanted to do further tests but said he’d need clearance from my insurers.
He prescribed Xanax and Valdoxan, an anti-depressant that mimics melatonin. I slept 6 hours but felt groggy the next day and decided to stop taking them: better, I thought, to allow my brain to find new ways of falling asleep without risking dependence. It was a struggle: when I closed my eyes, I faced an abyss, and drifting off was very forced, taking hours. There was no comfortable resting position for my eyeballs and the muscles guiding them upwards felt taut.
I tried repeating mantras and breathing deeply, but my brain couldn’t handle the lack of images. Any dreams I had were basic – my brain used imagery acquired since the Avelox – and drab. Sleep lasted 4 hours, limited, it seemed, by the lack of content in my dreams.
I also had problems with word retrieval: I kept stopping in mid-sentence, baffled. That was very scary. While still able to read and think I Googled my situation and found an article referring to ‘aphantasia’: absence of the Mind’s Eye. I tracked down one of the key academic researchers in the field who responded with links to antibiotic-induced hallucinations and asked me to keep him posted.
That weekend I went to a sketching class to see whether I could still draw; I was anxious but calmed down and did OK. As a very visual person, I’d rather die than lose my eyesight.
By that stage, I’d started making the link with FQs and found the terrifying EMA warnings. But I couldn’t find any case studies that reflected my experience, and didn’t have any other physical symptoms so thought I’d dodged full-blown FQAD. Then I became aware of pain in an outer muscle of my right knee flaring up. I’d had pain there before, but not for years.
Two weeks out from the Avelox I felt muzzy-headed, weak and fatigued from lack of sleep.
The neurologist called: my insurers had approved a Visual Evoked Potential test, which measures the time it takes images to travel between the eyes and the brain. My scalp was covered with electrodes and I had to stare, one stinging eye at a time, at a spot on a checkered screen. The neuro was taken aback: the results showed my optic nerve was operating at half normal speed possibly “indicating a neuro-toxic effect on the post-chiasmatic central optic tracts, resulting in rare visual deficits of imagery.” I’d need an MRI scan. Concerned about my image processing, he asked me whether I could still recognise people. I told him I could but that I was anxious about my inability to visualise internally and whether any neurological damage would intensify.
Traveling back home, I couldn’t focus on middle distance objects, and over the next few days watching TV began to hurt: my eyes had become very sensitive to bright lights and vivid colours. I started leaving my keys by the bed with an explanatory note and phone numbers, in case I lost my sight overnight.
Three weeks out, with no news from the neurologists, I called a GP friend, worried that I hadn’t been treated as advised. She told me to go to an A&E with my neuro results and ask for an MRI to force the insurer’s hand. They authorised the scan. After being given a gadolinium contrast agent, I was in the tube for over an hour, which was tough: it felt like the old mercury amalgams under several of my dental crowns were heating up.
After the ordeal the hospital’s neuro showed me some images. My eyes and optic nerves looked sound, as did my pineal gland, but there were “a few T2 weighted / FLAIR discrete hyper intense foci seen in the periventricular and juxtacortical white matter. Some of these are perpendicular to the septocallosal interface… In view of the orientation and pattern of these lesions… an underlying demyelinating / multiple sclerosis plaque disease is a possibility.” He focused on the MS, discounting FQAD, and prescribed 5 corticosteroid – Methylprednisolone – transfusions to reduce neuro-inflammation. I reluctantly agreed, recalling a friend who’d had eye and liver problems on the same drug.
I then had 6 phials of blood taken for extensive testing. The next day I voiced concerns about research I’d seen showing multifold increases in Achilles’ tendon bursting if corticosteroids were piled on top of FQs. One of the nurses told me that all drugs had side effects (didn’t they just!) and grabbed my knees: See, they’re fine!” But the pain worsened with each I.V.: I’d sacrificed mobility for vision. An orthopaedic surgeon examined my legs with ultrasound and agreed I had tendinitis. The swelling in my knees and ankles made sleep even more difficult.
After my final I.V. the neurologist told me all my autoimmune tests had returned negative, with CRP, liver and kidneys fine, but that I’d need another MRI in due course. He still dismissed the Avelox as a causative agent. I began to wonder how many FQAD sufferers had been mis-diagnosed with fibromyalgia or MS. At least I’d had my hallucinations as pointers.
The ortho was prepared to accept that I might have FQAD but having never encountered it the only advice he could give me was to to avoid straining my tendons for 6 months: all I could do was slow walking, with no sudden moves. This was devastating news having just re-built my strength after the abdominal surgery, and returned to the dancing I love so much.
He was at least inquisitive about my aphantasia and said he hoped it would resolve. But the profound darkness that had replaced my inner vision, and my nightly eye discomfort seemed intractable. Getting to sleep was a matter of luck after trying to quell chattering fear or summon up ‘coloured matter’ with which to create images. When inflorescences did appear, like fields of red and white poppies, they rapidly subsided. I kept searching for ways to restore my Mind’s Eye, as well well as other ‘neo-aphantasics’ who might help me find ways to adapt and achieve restful sleep.
More pressingly, I had to prepare for an imminent holiday, inescapably booked and paid for. I was worried about getting around: my increasingly painful tendinitis meant I could barely walk, and when I did, my knees crunched and clicked alarmingly. This sudden disablement was confronting for my body, which must have been wondering what had hit it: “Why can’t I run any more?”
Reading more around FQAD I found out about the FDA’s black box notices and the obligation to tell patients about side effects: clearly that hadn’t applied in my case.
I realised the amount of information I had, as much as I could absorb before our holiday, was the tip of the iceberg. My husband had done a little reading too, and was worried about me travelling. But I was determined to go after the terrible year we’d both had.
Just before we left, I found Floxie Hope and read that restoring my body’s functionality could be addressed with supplements. I just didn’t have time to order any in before travelling. Luckily there were some in the kitchen cupboards, just within their sell-by dates: Magnesium (Mg) Oxide tablets, along with some CoQ10 and Multivitamins.
My tendinitis had spread to my arms and wrists by the time we left. Usually, I like to carry my suitcase – I always need access to a range of items – but on this occasion I couldn’t even lift it. Driving from the airport, we were pelted with rain for hours: the windscreen frenzy hurt my eyes. During the night I was woken up by my heart racing and pounding. I’d never had cardiac issues before and was terrified, but recalled from FH – Bronwen’s Story – that Mg regulates heartbeat, so I took 2 tablets plus an avocado (also Mg rich) I’d bought earlier. It worked. Next day I felt relaxed: my central nervous system had switched from ‘fight and flight’ to ‘rest and digest’. Thanks Bronwen!
Crunchy, painful knees and ankles meant changing the ways I moved. I had to take stairs sideways, one cautious step at a time, and I couldn’t manage steep slopes or rough terrain. Every stumble might mean a burst tendon and more bedridden months. In the lovely walled town of Lucca I ground to a halt, down a narrow alley, scared and flustered in the midday heat. I was sure my knees and ankles were about to snap. Luckily there was a trattoria nearby with empty outdoor seats. I tried not to wince as kids in the street jumped on an access ramp. Clang! Back to ‘fight or flight’…
I tried swimming but was scared that foot flipping would rip my tendons. Every night having failed to sleep I scrolled through FH stories, seeking reassurance and tips. It struck me that very few of the submissions were about Avelox. I wondered whether this might be to do with the hallucinations: there’s the risk of sounding mad. I saw that Avelox is used in eye drops; was it especially drawn to the visual system?
I read that of the many kinds of Mg, Oxide wasn’t well absorbed. I looked for restful Mg glycinate, and neuro-enhancing threonate, least likely to bring on ‘disaster pants’, to quote Dr. Mercola. In every town I’d scope out pharmacies for Mg supplies like an addict! The best was in an old pharmacy in Lucca: organic capsules with 5 forms of Mg, very soothing. I also searched for PQQ: pyrroloquinoline quinone, a mitochondrial booster. Happily it occurs in kiwis, and our hotel had a bowlful. I ate them all.
Another hobbling holiday highlight was the Leaning Tower of Pisa. Recently cleaned, it was stunning, but its 7 degree tilt puts it in another league. I was delighted by this entity made more compelling for being skewed. My husband took a picture of me leaning in to it.
Back at home, my vistas narrowed to my symptoms. Fatigue and depression set in, and I had to force myself to do the most basic tasks. Luckily we live above a row of shops, so I could just about forage for food, and some was organic: it felt important to minimise toxins.
One morning I woke up unable to bend my legs without severe pain. Panicked, I called the chiro who’d helped free up my surgery scars. She massaged my knees, which I’d been scared to try. Afterwards my joints felt like they’d been greased with WD40. She told me to keep them warm, difficult in summer when cold A/C air pools at shin height.
In June, my hair started falling: every time I washed it, the sink filled with strands. I remembered an interview quote from Lisa Bloomquist: “FQs are chemo drugs: fine if you have cancer, but overkill for a sinus infection.” I found this: re-purposing FQs for chemo:
Avelox had been shown to “induce apoptosis [cell death] mainly by reducing glutathione levels, increasing mitochondrial dysfunction and oxidative stress within the cells.” It also seemed useful in adjuvant therapy: along with Irinotecan, it was effective, in a mouse study, against colon tumour growth and blood supply acquisition. I was annoyed by the authors’ enthusiasm for FQs, then reflected that my inadvertent chemo might have helped stave off any cancer. But I was glad I’d gone without chemo: Fluororacil-5 might have slayed me. Then again, maybe the Avelox wouldn’t have been so potent if my liver hadn’t been compromised by the fluoride-containing statin…
Like chemo recipients, I read that many Floxies have gastro problems. Despite my fatty keto(-ish) diet my weight remained stubbornly low: I wasn’t absorbing much food. Being thin isn’t fun when your bones grate together.
Referring to ‘The FQ Toxicity Handbook’ I devised a new healing, nutritive protocol and asked a local naturopath to look at it and make sure I wasn’t endangering myself or conflicting with the anti-cancer drugs, several of which – the NSAID and antibiotic – I’d had to ditch because they worsened Flox effects. She’d never treated a Floxie but said she’d do some homework. In the meanwhile she suggested an oxidative stress test. Before the results arrived, we agreed I should continue with Mg Threonate, Mg Glycinate, Amino Acids, Ubiquinol, Vitamins D, C and E, Selenium, Methylated B vitamins, N-Acetyl Cysteine and PQQ.
I continued researching FQs, especially their Fluoride (F) content, because I imagined I was exposed to quite a bit, given the proximity of the local aluminium smelter. I changed out my toothpaste and the bottled water I normally drink. ‘F: Undetected’ said the label, but I found an article stating it contained surprisingly high levels. On the plus side, it seems the local water is unfluoridated, which made showering and bathing less frightening.
Scrolling through FH I saw that 23andme genetic data from 38 Floxies, patients of 2 methylation specialists, showed that all had mutations on 3 genes related to SuperOxide Dismutase (SOD): rs2758331, rs2855262 and rs4880. I found out that SODs are metalloenzymes containing ions of transition metals, mainly Manganese (Mn), Copper (Cu) and Iron (Fe) that are abundant in mitochondria, and highly antioxidant: the first line of defence against chemicals like FQs in toxic amounts.
Transition metals present as bright colours in solution: Mn is magenta, Cu cyan and Fe yellow. These 3 ‘print process colours’ can be used to make the entire spectrum. They’d also exploded into my visual field on Avelox, then sputtered out. I liked this crazy coincidence, and the idea of SODs being substrates for the internal visual system, the paints from which imagery arises: Mind’s Eye as Etch-A-Sketch!
Intrigued as to whether a genetic approach would shed further light on my FQAD, I sent my 23andme results to one of the specialists behind the Floxie-SOD connection. I was glad my genetic data would be more use than revealing I was 2% Scandinavian. I also provided recent bloods and an autobiography: it seems adverse life events can ‘epigenetically’ impact the ability of genes to issue the proteins / enzymes – gene products – responsible for repair and maintenance.
My raw 23andme data had to be processed through an app revealing my methylation SNiPs: a full 47 pages. These single nucleotide polymorphisms – misplaced Adenine, Thymine, Guanine and Cytosine building blocks that can scramble genetic instructions – are graded green / yellow / red according to the extent to which they might compromise bodily stability: 20%, 50% or 80%.
I looked for the Floxie SOD mutations: there they were, on rs2855262 and rs4880, yellow and green. I ran my red SNiPs through SNiPedia, a site that checks genes against online articles. Most coded for nothing much, but tellingly, one tumour suppression gene looked faulty. I Skyped the specialist for deeper insight: the third Floxie to contact him that week. My SNiPs implied I wasn’t great at breaking down alcohol and histamines, or absorbing Vitamin D. It seemed My MTHFR (methylene tetrahydrofolate reductase) SNiPs, which can lead to high homocysteine (associated with thrombosis) and inhibition of folic acid processing, weren’t category red, although taking methylated B vitamins might be a good idea.
He emphasised intestinal integrity: “You gotta fix your gut.” Which would involve removing heavy metals, re-lining passages and re-populating them with good bacteria. Then I could set about repairing my metabolic pathways and cycles, the factory lines that turn food into energy, with fat-soluble liposomal vitamin C, enzymes, amino acids and electrolytes. GABA (Gamma-Aminobutyric acid: an inhibitory neurotransmitter that decreases nervous system activity) might help regulate my sleep. All on top of the tablets I was already taking, including diabetes drug Metformin: with its ability to close mitochondrial permeability transition pores, it probably repairs FQAD as well as protecting against cancer.
Shipping the supplements at the height of summer was nerve-wracking. Everything arrived warm, but after anxious calls to suppliers I was reassured the goods were heat tolerant. Nothing seemed cloudy or rancid so I embarked on my protocol.
When my oxidative stress test – Genova 2.0 – results showed up, I went to see the functional doctor. She homed in on the divergence between protective enzymes. My SOD was off the scale – 24,847 U/g Hb (upper reference 16,662) – which, coupled with low-ish Glutathione Peroxidase – 25 U/g Hb – implied increased risk of oxidative damage from hydrogen peroxide, and selenium deficiency. We decided to supplement with Liposomal Glutathione and increase methylated B vitamins, selenium, and N-Acetyl Cysteine, despite the onion smell. “Chlorophyll – wheatgrass – will help with that.” It did.
After a spell of very hot weather, I noticed my eyes filling with floaters, and my vision blurring and doubling again. It was probably just a case of ‘dry eye’, but I thought I’d better get it checked out. Of all the FQs, Avelox is best at inducing uveitis: inflammation of the middle layer of the eye wall, including the iris. FQ collagen degradation can also affect the vitreous, and tendinitis in muscles around the eye may cause double vision.
I went to see an ophthalmologist, who dismissed FQAD and said my lenses were very ‘dense’, indicating the onset of cataracts, with floaters suggesting vitreous detachment, both due to ageing. I told him I’d never had any problems with my eyes until the Avelox. He prescribed some hyaluronic eye drops, which are at least soothing, and not on the ever-lengthening list of meds I have to avoid. I’ll be seeking out another opinion and some vision-enhancing neutraceuticals. Resveratrol, Schisandra and turmeric?
The Mind’s Eye researcher interviewed me to record my experience. I told him I’d found an explanation for the geometric hallucinations I’d had, in an article based on a lecture by psychedelic researcher Professor Jack Cowan in 2013:
How Geometric Hallucinations Are Generated in the Brain
“With eyes closed, since there is no external input, the geometric hallucination should reflect the architecture of the brain; more specifically, the architecture of the visual cortex. The brain can generate geometric hallucinations out of an unstable state because the architecture of the primary visual cortex (V1) exhibits symmetry. There is evidence that the orientation columns (which display a shift-twist symmetry) and the interconnected modules or hypercolumns (which display a lattice symmetry) can create geometric hallucinations when appropriately stimulated.”
Perhaps more revealing was this, from the article’s comment trail:
“The article seems to leave out the final stages of the shared hallucinogenic experiences that go beyond geometry… on to a passageway, tunnel or vortex, and then a strange form of alternate reality with beings that have human bodies and animal heads. These are just as universal as the geometry that precedes, and just as noteworthy.”
So my full blown trip was nothing special. Except that I’d had it on… an antibiotic.
As distressing as this whole episode has been, it does present a few interesting questions. Did manganese, copper and iron, drawn out by the Avelox, cause my ‘colour storms’? Why did the Avelox race straight up into my optic nerve? Will my ability to visualise images return? Is Glutathione anti-Flox but pro-cancer? Do Floxie SOD SNiPs indicate a general sensitivity to Fluoride-containing medications? Any hypotheses gratefully received.
I’m now nearly 5 months out: still in pain most days, worried about my eyesight, and experiencing claustrophobia every time I try to sleep. On the bright side, my knees and ankles are less agonising more often, my weight has settled around a BMI of 20, and I can sometimes manage 7 hours sleep. It’s tricky to tell which of my approaches is helping the most. But I feel better being proactive, learning about nutrition and physiology, and becoming my own experimental guinea pig.
Occasionally I feel completely fine, but the moment I tell people I feel better, the symptoms return. I have to keep reminding myself to expect pullbacks in this complex situation, and not to lapse into complacency.
Although I’m not fully recovered, thanks to the help of many kind and thoughtful people, I feel that I’m on an upward trajectory, and celebrate my good days. I’ll provide updates to this story as I heal further.
Thank you for reading this, and good luck with your own recovery.
*****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, affect 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.