The Downward Health Spiral Following Fluoroquinolone Antibiotics

In 2016, I went on a cruise. Little did I know that this would change my life. I was prescribed a fluoroquinolone antibiotic called Ciprofloxacin (Cipro) for an uncomplicated UTI. At the time, I didn’t notice any side effects, but over the next few years I was having more pain than I would usually have with Fibromyalgia and Hypermobility Ehlers Danlos Syndrome (EDS). I also had episodes of breathlessness, chest pain, and fatigue, for which I was referred to cardiology and prescribed Atenolol, Clopidogrel, and Glycerol Trinitate (GTN) spray.

I started having many allergic reactions to foods and chemicals in products like toothpaste, shampoo, and hair dye (products containing sodium laurel sulphate). I had an allergic reaction to aspirin, which indicates salicylates sensitivity, and I experienced frequent candida infections in my mouth and esophagus. The candida infections in my mouth and throat were severe and I was initially prescribed Nystatin, which didn’t help. Then I was prescribed Fluconazole, which unfortunately flared my overall symptoms. It was unknown to me at the time that medications and other substances containing fluoride exacerbate Fluoroquinolone Associated Disability and so should be avoided.

I also developed dry eyes and ears for which I was prescribed Carbomer gel eye drops for nighttime use and Systane gel for day time. Finally, although I had migraines prior to the fluoroquinolones, they became much worse following the use of these antibiotics.

I did not realize that my symptoms were connected to this antibiotic until after another cruise in July 2018, where I was prescribed the same antibiotic for the same issue. However, this time I felt side effects almost immediately. I was extremely fatigued and had to spend much of the cruise resting in my cabin. When I arrived home, I was having a lot of pain in my calf muscles. The cruise ship doctor mentioned that this can be a side effect of the medication and so I visited my own doctor when I returned home. Initially, he didn’t think it was related, as he was only aware of issues with the Achilles tendon in athletes associated with this medication. However, as my health continued to decline over the course of the following year, and in line with side effects linked to the medication, he acknowledged that my health issues were related to the fluoroquinolone antibiotics.

A Diagnosis of Myalgic Encephalomyelitis

The deterioration in my health not only included unrelenting fatigue, I was also now experiencing severe chest pain, orthostatic intolerance, air hunger, terrible internal vibrations, neuropathy, and blood sugar fluctuations. I contacted Hope 4 ME and Fibro Northern Ireland, a local charity, and they offered me an appointment with a consultant physician. The consultant’s opinion was that I was suffering from a mitochondrial disorder. He gave me a diagnosis of Myalgic Encephalomyelitis (ME – severe), as I met the criteria for that condition particularly symptoms of Post Exertional Malaise (PEM).

Over the following months, the fatigue became totally debilitating. I developed sudden onset PEM from minimal activity. I was referred to cardiologists and respiratory consultants and had many cardiac function and respiratory tests, but nothing from these fully explained all of my symptoms. I was prescribed asthma inhalers and numerous cardiac medications, which I was unable to tolerate.

Food Sensitivities, MCAS, and Difficulties Healing

Slowly, due to having reactions, I had to begin cutting certain foods out of my diet. My diet now is extremely restrictive and contains no gluten, dairy, or nightshades. I eat only organic foods, due to chemicals in fruit and vegetables, and the antibiotics in meat and fish. I can’t risk having any further fluoroquinolones from the food chain. The consultant in Chemical Pathology & General Medicine, whom I had been attending for Fluoroquinolone Toxicity, suspected that I had Mast Cell Activation Syndrome (MCAS) and referred me to immunology who requested tryptase level testing.

In January 2019, due to my respiratory type symptoms, doctors suspected that I had developed a chest infection (walking pneumonia). This was ongoing for over 5 months. During that time, I was prescribed two courses of antibiotics (not fluoroquinolones), inhalers, nebulizer treatment, a course of prednisolone steroid, and the mucus medication Erdosteine and then Carbocisteine. My blood count dropped suddenly and I had various blood tests including those for vitamin and mineral deficiencies. I had numerous emergency trips to Accident and Emergency with respiratory, cardiac symptoms, and collapse (unconscious) resulting in a head injury.

Tendinopathies

After the treatment for the suspected chest infection issues, my tendons became increasingly more painful, extremely tight, and although, I would occasionally sublax in my shoulder joints due to Hypermobility EDS, I was not recovering from these like I normally would have. I attended another GP about my shoulder and he advised me that I needed to see an orthopedic consultant urgently. I would need to go privately due to very long wait list on the National Health Service (NHS).

The tendon pain in my legs rendered me unable to walk at times and the severe pain in my shoulders and arms makes it difficult to care for myself. I was assessed, and the results of MRI scans confirmed tendinopathy and bursitis. I was unable to sleep due to the pain.

Yes, It Was the Fluoroquinolones

As mentioned, it took some time before my symptoms were associated with the fluoroquinolone antibiotics. At the many GP appointments I had over Autumn/Winter 2018/2019, I kept reiterating that summer 2018 marked the beginning of this massive deterioration in my already poor health. I mentioned again having taken Ciprofloxacin and later receiving the ME diagnosis. I also mentioned a consultant in Chemical Pathology & General Medicine that had been recommended to me by my hypermobility physio. My GP knew of this consultant and recommended I see him privately. I made an appointment. When I read the referral letter, I noticed that my GP had mentioned the marked downturn in my health from summer 2018. He postulated that the fluoroquinolones I was given that July were responsible. On reading this, I then knew that I was correct in suspecting that something had happened to my body as a result of the medication.

The consultant didn’t confirm fluoroquinolone toxicity at this particular appointment but he did prescribe for me, privately, the off label medication low dose Naltrexone (LDN) to ease some of my symptoms. I’ve had numerous review appointments with this consultant and many blood tests. Correspondence from this consultant to other consultants to whom he has referred me, state I attend him for ‘Fluoroquinolone Toxicity, which seems to be well routed and has actually happened’.

Learning About Fluoroquinolone Toxicity Through Other Patients

There aren’t many treatment options for Fluoroquinolone Toxicity in the UK, so I have been doing what I can to educate myself and discover what I can do to ease my symptoms. I joined a few Facebook groups, which appear to mostly have American members in very large numbers. I also watched a YouTube video of The European Medical Council Public Enquiry where I heard orthopedic specialist, Professor Neal Millar speak. On googling his credentials, I came across a The Daily Mail article that mentioned Fluoroquinolone Support UK, which I joined. It has been extremely helpful connecting with those with shared experiences. We are able to support and learn from one another.

I also reached out to Professor Millar, with whom I have had telephone consultations. He confirmed that my issues are related to Fluoroquinolone Associated Disability, and has diagnosed me as such.

The Long List of Heart-Related Changes Associated with Fluoroquinolones

I have had numerous review cardiologist appointments, at which I went armed with printouts from The European Medical board, the Medicine and Health Products Regulatory Agency (MHRA) and other articles mentioning FDA warnings about the fluoroquinolone antibiotics. The cardiologists I saw were very receptive to these. I have undergone many more cardiac and respiratory tests including scanning for arterial tears and aortic aneurysms, which are listed as adverse reactions of fluoroquinolones. To date (2024), I am still under the care of these consultants. I have been diagnosed with Paroxysmal Supraventricular Tachycardia (PSVT), Microvascular Angina, Atrial Fibrillation, Bigeminy, Mitral valve and tricuspid regurgitation and enlarged Left ventricle. I DID NOT have these issues prior to being Floxed (the common term used to describe when the toxic side effects of fluoroquinolone antibiotics are experienced).

Other Issues Associated With Fluoroquinolones

I also suffer with mood swings, anxiety, insomnia, burning nerve pain, heat intolerance, flushing, and low body temperature. I’m still suffering the extreme variations in heart rate on minimal activity and PEM, angina pain, esophageal spasms, chemical and food sensitivities/intolerances. I developed a Dupuytren’s contracture, ganglion cysts and skin lesions, and one recently removed was a basal cell carcinoma. The fluoroquinolone exposure has exacerbated my pre-existing cervical spine pain and lower back and hip pain. All of this causes significant limitations of daily living.

Suicide Attempts: A Common but Recognized Adverse Event

I also suffered suicidal ideation and had three suicide attempts. Risk of suicidal thoughts and behaviors are side effects of fluoroquinolones and the FDA and MHRA have them in their warnings. There have been documented deaths by suicide due to fluoroquinolones, and recently, in the U.K. a cardiologist died by suicide whilst having been taking the drug for only a few days. On the report he sent to the MHRA: Robert Stevenson: Prevention of future deaths report – Courts and Tribunals Judiciary, the coroner listed the cause of death as suicide.

Unfortunately, due to all of these adverse drug reactions and their disabling effects, I have had breakdown in relationships and lost friendships. This has been heartbreaking, extremely traumatic, and stressful.

A Fluoroquinolone Specialist

I contacted Dr. Stefan Pieper after reading his book Fluoroquinolone-Associated Disability (FQAD) – Pathogenesis, Diagnostics, Therapy and Diagnostic Criteria: Side-effects of Fluoroquinolones. It is an invaluable resource for understanding FQAD. Dr. Pieper divides the fluoroquinolone adverse effects into four groups:

• Oxidative stress and mitochondrial toxicity
• Musculoskeletal damage and collagen disorders
• Neurotoxicity, which includes: peripheral neuropathy, autonomic Neuropathy, and small fiber neuropathy
• Neuropsychiatric adverse effects

I am currently receiving support from him. He confirmed that I have suffered a severe fluoroquinolone toxicity and recommended a number of tests. A microbiome test I had done in 2019 revealed:

• Low levels of beneficial bacteria and probiotics detected
• Low potential for microbiome fiber metabolism
• Below-average microbiome ability to produce vitamin B1, B3, B5 and B9 in sufficient amounts

Based upon Dr. Pieper’s tests, a protocol was designed that included many supplements. I should mention that these supplements and medications are unique to my situation and should not be applied more broadly to others with Fluoroquinolone Toxicity without the advice of a physician. The supplements:

Probiotic, Prebiotic (Inulin), Collagen, Liposomal Vitamin C, Vitamin D with K2, Acetyl-L-Carnitine, MCT, D’Ribose, L’Glutamine, Wheat germ, Turmeric, Multivitamin, Allicin, Ubiquinol (Co Enzyme Q10), N-Acetyl- Cysteine, Omega 3 from Algae, Magnesium Bi-glycinate, Calcium, Cissus Quadrangularis, Ashwagandha, Bee Propolis,  Apple Cider Vinegar, melatonin, and B6 p5p.  I also have four weekly B12 (hydroxocobalamin) injections.

I also take the following prescription medications:

• Atenolol
• Clopidogrel (Plavex)
• Certirizine
• Famotidine
• Low Dose Naltrexone Sublingual

Dr. Pieper also recommended that I should avoid, if possible, steroid treatments, vaccinations, antibiotics, NSAIDs, and unnecessary medical procedures, since they might cause flare-ups and make matters worse.

Where I Am Now

I am devastated that my life has been destroyed by this drug. Yes, I was already disabled due to the Fibromyalgia and Hypermobility Ehlers Danlos, but had a quality of life. That has been robbed from me due to two courses of 10 tablets of fluoroquinolones. I now predominantly use a power wheelchair due to the severity of the fatigue, heart issues, pain, muscular atrophy and PEM. I’m housebound with many days completely bedbound so I am significantly disabled.

Although I am terrified as to what the future now holds for me, particularly due to how severely I have been affected, I always try to remain positive and hopeful that healing could happen. My motto is “Live life in color” and although mine has been dimmed somewhat, I choose to be happy and optimistic. I remind myself that every day is a new day, and there are joyful moments to come.

By publicizing my story, I hope to raise awareness around Fluoroquinolone Toxicity and Fluoroquinolone Associated Disability (FQAD) because there should be more public awareness. Currently, there are multiple lawsuits underway in Canada related to fluoroquinolone antibiotics, including class action lawsuits and individual claims. In the U.K., there isn’t an ICD-10 diagnostic code for FQAD. ICD-10 codes are important in providing “a common language for recording, reporting and monitoring diseases”. Healthcare providers use ICD-10 codes when diagnosing patients. We need FQAD to be declared a medical disability, and NICE guidelines to provide health professionals with recommendations for the treatment and care of people suffering Fluoroquinolone Toxicity. In the USA, however, I’m pleased to see that The Center for Disease Control will be implementing ICD-10 code in October 2025.

The first ever Fluoroquinolone Awareness Day will be held on 22nd October 2024. The aim is to bring awareness to Fluoroquinolone Toxicity worldwide. There is a page on Facebook of same name containing information pertinent to the event. I am on the committee representing the U.K. We aim to promote awareness in whatever way we can, including flooding social media with information including our stories.

If you have suffered side effects from fluoroquinolones please submit a report. In the U.K. reports should be files with the MHRA via this link: MRHA Yellow Card. In the US, reports are filed via the FDA: FDA Safety Information and Adverse Event Reporting Program.

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Photo by Matt Seymour on Unsplash.