There are many RxISK posts on antibiotics – look under antibiotics – with 6 or so dealing with Fluoroquinolones from the original Flox-Tox to Fluoroquinolones: Not so Carte Blanche. Miriam Knight has written this one.
Doctor: “I’ll give you an antibiotic to clear that up”.
Me: “Thanks very much”.
I imagine just about everyone reading this will have had that conversation. I know I’ve been very pleased to have an antibiotic for various things over the years, including chronic cystitis in the early 70sd. My older sister, a chemistry graduate no less, told me the reason I got thrush straight after cystitis was because the antibiotic killed off all the good bacteria ‘down below’ allowing the thrush to get a grip. So, next time it happened, I blithely asked the doctor if there was an antibiotic that wouldn’t cause thrush, fully expecting him to say ‘gosh, thanks, I didn’t realise…’
His actual reaction was one of near anger – what nonsense, he’s never heard of that and no, that doesn’t happen. As predicted, I was back in the surgery a few days later with more thrush but didn’t dare to say ‘I told you’.
Since that time I’ve always been amazed at the attitude of the doctors I’ve met who have an unshakeable faith that what they know is right and what they don’t know doesn’t exist. I didn’t know it then but ‘built-in doctor-denial’ dominates my waking hours as I, now 68, struggle to raise awareness about the dangers of certain antibiotics. My sister’s advice has been replaced by Dr Google and I can access guidelines and academic papers just as easily as any doctor yet I’m repeatedly told not to believe everything I read on the Internet.
I used the word “dangers” above, which isn’t generally associated with the antibiotics that we’ve come to rely on to ‘clear things up’, although everyone is aware that some people are allergic to penicillin.
The struggle I mentioned began in 2013 when my husband was plagued with urinary tract infections (UTIs) caused by his indwelling catheter – caused, in turn, by his MS. He was always given an antibiotic, and, if that didn’t work, a stronger antibiotic. Twice the doctor resorted to an even stronger one which he called a third line of defence and which always did the job. (Notice I’m not using any names here because, back then, the names of the various antibiotics didn’t seem important.)
My husband was more or less bedridden at this time from both the MS and a recent bout of sepsis caused by a UTI that I hadn’t spotted. After that I watched like a hawk but yet another UTI came along leading to treatment with Trimethoprim followed by Cephalexin (learning the names now). Then the strongest antibiotic – which I remembered because the packet said not to take dairy products with it (more Coffeemate in his tea!). Three days later Phil was lying in agony and the name Ciprofloxacin and its huge list of side effects were firmly embedded in my mind.
When he said he couldn’t move because of the pain my first thought was that he’d had some kind of stroke. I offered him his next Cipro tablet but he refused it saying they were causing the pain. I secretly thought that was nonsense but took out the packet leaflet to see what side effects were listed. He was on several permanent meds so I didn’t usually pay much attention to the leaflets but reading this one was a genuine OMG moment. Possible aches and pains galore listed and even the chance of Achilles tendon rupture, which I thought seemed quite random at the time.
When I added ‘problems with’ to my ciprofloxacin search and discovered a whole new world of long-lasting disabling pain and debilitation with many other serious things thrown in. I discovered it can happen immediately or after several courses (as with Phil), and that it’s often described as a time bomb waiting to go off as it can even start months after a course has been finished. It can have serious psychiatric side effects as well as physical and that some people were still not recovered after several years. OMG again – how to tell a man who’s already bedridden that things may get very much worse?
I learned that ciprofloxacin is one of a class of synthetic antibiotics called the fluoroquinolones and has siblings called levofloxacin, moxifloxacin, norfloxacin and ofloxacin (also called Cipro, Levaquin, Avelox and Floxin in the US plus there are many other names and generics). I found that they were preceded by the quinolones (in the 70s) and then a fluorine molecule was added to improve tissue penetration leading to the first fluoroquinolone, Cipro, being launched in 1987.
Approval was rushed through by the FDA as a treatment for anthrax and it was handed out (secretly) to servicemen in the first Gulf War (perhaps contributing to the Syndrome?) and was also given to the Washington Postal Workers when an anthrax threat was feared in the 90s (resulting in a court case). Despite rumours about the possible severe side effects, fluoroquinolones became very popular as THE most reliable antibiotics up until 2012 when fears about resistance started to slow their use. I read a quote by one US doctor that will always stay with me – he said using Cipro for a minor infection is like using a Kalashnikov to kill a mosquito.
Most worrying was reading in a 1996 paper that ciprofloxacin was found to damage mammalian mitochondrial DNA. I vaguely remembered something about mitochondria from my school biology but couldn’t imagine why an antibiotic would have any effect on them. Then I read that Cipro had also been used as a chemotherapy drug. This was sounding unreal so I stopped reading.
In the morning our doctor told me they’d never come across any problems with it, that he’d used it correctly (as third line defence) and that there were stories about it but I shouldn’t believe them. He couldn’t offer any explanation as to why Phil was in such pain but said luckily the infection results came back negative so it didn’t matter that Phil had stopped taking them. So why was he given them? ‘Just in case’! He said he didn’t know anything about mitochondria so I suggested he looked it up. I don’t know whether he did because he won’t discuss it with me even now.
I soon realised it’s no good trying to talk to doctors who, I believe, are trained not to question the drugs they are told to prescribe and to not listen to patients who have read something or seen it on the telly. I decided to take my questions to the top and started writing to the people who licence the drugs, the MHRA. I also co-founded a Facebook Group with a “floxie” (someone affected by one of the -floxacins), to try to find others in the UK who have been harmed by fluoroquinolones. Our aims are to offer support and provide information as well as to try to raise awareness. I am always saddened when someone asks to join us saying that their doctor doesn’t believe the fluoroquinolone can have harmed them and that their friends and family believe the doctor. We’re often told we’re the first people who actually understand what’s happening to them – which is shocking given that there’s so much information out there about it.
In 2021, doctors are still as big-headed and unwilling to learn something new as they were in the 70s. They adapt and progress but are not allowed to think outside the box and they get vilified if they dare to question the norm. I know of three floxed GPs who have had great difficulty in getting any of their colleagues to acknowledge that a fluoroquinolone had caused them so many ongoing problems that they had to retire. One of them was persuaded that her painful symptoms were psychological and was sent on a two year journey of seeing various mental health specialists and was offered a variety of drugs to help with the ‘perceived pain’ – which is kind of why I’m writing this blog.
Gaslighting, or getting rid of troublesome patients by sending them down the psyche route, is convenient but very dangerous. Many drugs usually prescribed for physical problems, especially antibiotics, hormone treatments and anaesthetics, can have serious psychological effects although this is rarely recognised. When used alongside antidepressants or antipsychotics, they can all be dangerous but the fluoroquinolones do deserve a special mention because of the way they act upon the GABA receptors (“some of the most common neurons in the mammalian nervous system”) .
GABA has important effects on the brain’s normal function. Too much and you will be physically slower, have lower energy, be relaxed or sleepy. Too little and you will struggle with anxiety, panic attacks, or even seizures.
The fluoroquinolones bind to the GABA receptors, effectively acting like an emergency brake, leaving anyone liable to suffer insomnia and depression or anxiety attacks. A patient who is already taking prescribed drugs active on GABA will find themselves suddenly cut off from their medication’s effects even if they increase the dose. Psychosis and convulsions have been recorded although I have to say that the worst case I know of is somebody who had already been suffering from akathisia for 2 years (caused by a new doctor “tweaking” his long term meds) when he was given ciprofloxacin in A&E “just in case”.
This person carried a card from the Akathisia Alliance stating that he suffered from akathisia and must not be given various drugs, including the fluoroquinolone family, which might exacerbate it. He had to go to hospital with a severe pelvic pain and, despite blood and urine tests being negative, and despite showing his card, he was given Cipro. Cipro is only supposed to be used as a third line defence, i.e. when two other types of antibiotic fail, yet this A&E doctor ignored not only the card but also the guideline. A frightening demonstration of not only how little some of our doctors know about combinations of certain drugs but also how little they care.
This guy’s akathisia suddenly became stronger because the Cipro ‘turned off’ the 15mg of diazepam he’d been on for two years (to help overcome it). But then he was also beginning to experience many other adverse reactions that fluoroquinolones can cause, including severe pain in the muscles and joints. His gut was also severely affected and he started to get strange temperature problems including ice cold soles of his feet yet burning fever and sweats. What do his doctors say? Nothing! Apparently he has a long history of being obsessed with his health (hence the long term meds) and this is nothing at all to do with the Cipro. I’ve sent his Clinical Team documents such as the EMA report referenced above along with information from the Cipro Patient Information Leaflet (5) and the doctors guidelines (SmPC), all of which list the adverse reactions including those that he’s experiencing. But no, it’s nothing at all to do with the Cipro – it’s definitely all in his head.
In my support group we find most people suffer mainly from very painful physical effects with any depression, insomnia and panic attacks as some kind of supporting acts. The EMA Report details how the fluoroquinolones cause such mayhem in the body and cites its main effect is to disrupt our mitochondria and the whole process by which we convert nutrition into energy (the ATP cycle). Each one of our cells (apart from red blood cells) contains anywhere between 100 and 5000 mitochondria depending on its particular job – for example one heart muscle cell might have 5000, a liver cell has around 2000 and a ‘normal’ cell just 100 or so. This ‘mayhem’ leads to oxidative stress which disrupts our cells.
The result is mainly pain; pain in the muscles and tendons (the Achilles and other tendons can rupture), pain throughout the nervous system with peripheral neuropathy being a huge problem, and burning pain or pins and needles in the skin. Add to this gut problems, eye and ear problems, dizzyness, fatigue plus the insomnia etc. mentioned above and you begin to get the overall idea that fluoroquinolone antibiotics are not very handy. The full list of side effects, warnings and cautions are in the packet leaflet, although this doesn’t mean that a doctor will actually think any experienced problems listed are to do with the drug he’s just prescribed!
Very few people are affected immediately. Some only feel something is wrong after a couple of courses while others say they’ve taken many courses without any problem at all. Who is affected, how seriously and by how many tablets seems to depend on the mitochondrial health of each individual. Various factors to do with any genetic deficiencies from birth, exposure to environmental and/or pharmaceutical toxins, lifestyle (eating, drinking and fitness habits) and age all play a huge part. Simply put, we all need a certain amount of energy to get through a day and a healthy young adult probably has 60% more mitochondria than they need. This spare capacity drops as the mitochondria get ‘insulted’ over the years by bad diet, living next to a busy road or factory (environmental toxins), taking long term pharmaceuticals (also toxins) while a genetic defect at birth might start to manifest itself in young adulthood as maybe MS, Ehlers-Danlos, Rheumatoid Arthritis etc. We naturally expect to slow down as we get older but we don’t really expect an antibiotic to bring us to a grinding halt!
Stephen Fried’s book Bitter Pills outlining many of these problems was published in 1998. It took two decades for FDA in the United States to recognise Fluoroquinolone Associated Disability (FAD) Syndrome in 2016.
Doctors should be aware of the dangers but few of them are. Don’t just accept “an antibiotic”. Question it if you or anyone you know is prescribed a fluoroquinolone.
co-founder Quinolone Toxicity Support UK