What Next?
Now that you've been floxed, what can you do?
We wish there was a simple answer, a quick fix or a magic potion - but we’re sorry to say there isn't.
All we can do is make suggestions and pass on tips that members of this group have found useful.
DON'T PANIC!
It's a natural reaction – something bad is going on in your body, but stress and panic (and adrenaline) won't help at all. Also, in many people, the fluoroquinolone actively creates feelings of depression panic and anxiety, sometimes even psychotic thoughts, so please don’t blame yourself if this happens to you. Try to keep calm and read on...
DON'T ADD TO THE POISON
There are some drugs we know you shouldn't take unless you absolutely have to, especially steroids like prednisolone, and NSAIDS such as ibuprofen. These are sometimes prescribed (in error) for the pain caused by fluoroquinolones, but are known to make things much worse.
We suggest you avoid them for at least a year although you’ll find doctors will argue about this. The article linked below, written by a floxie, discusses the possible reasons. Unfortunately, there is no conclusive evidence mainly because no-one has studied the long term effects of fluoroquinolones in depth. The only evidence we have is the number of floxies who report their experience of worsening of symptoms:
https://floxiehope.com/why-nsaids-suck-for-floxies-and-probably-everyone-else-too/
All fluoroquinolone Patient Leaflets warn that people who are already taking steroids before FQs are at greater risk of tendon problems, while many sufferers believe their pain was worse because they were prescribed a NSAID along with the FQ. Some people found their symptoms were not very severe until they took ibuprofen several months later which then seemed to set things off. We are aware that you may need either of these for other health conditions but there is strong evidence that you should avoid them if you can both during the course of the FQ and for as long as possible afterwards.
TOXINS IN THE AIR
Some 'floxies' find they can't tolerate smells from chemicals (e.g. cleaners, air fresheners, detergents, smoke), so try to stay away from these. All those fake perfumes are tiny chemical molecules getting into your system, and you don't need that right now.
YOU ARE WHAT YOU EAT...
...so what you eat now is more important than ever. Many people find floxing messes up their appetite for a time - if this happens to you at least try to eat whatever you can manage to keep your strength up. If you can eat 'normally', remember that eating sugary and junk foods will only add to your toxic overload. Most floxies prefer to eat ‘clean’ i.e. no processed food or food with additives, flavourings, cheap fats (e.g. palm oil) etc. Some explore new ways of eating (e.g. keto, paleo, gluten and/or dairy free) but remember that worrying excessively about what you eat can cause stress – which you don’t need! The bottom line is don't give your stomach too much to do, as the antibiotic will have killed off the good bacteria in there along with the bad.
You could start to replenish the good bacteria (your microbiome) as soon as possible by taking probiotics. These can be found in capsule form (look for one with multi-cultures – the more the merrier) and also in natural yoghurt (make sure it says 'probiotic' or 'live cultures') – full fat or Greek style is best, kefir along with other fermented products like kombucha. Yakult-type drinks can be useful but are sweetened and don’t contain that many cultures so are less effective.
Alcohol probably won't appeal to you at all if you are feeling ill, but, even if you are tempted, most sufferers find it exacerbates their symptoms, or that just a small amount gives them a terrible hangover. Your liver is busily trying to clear the fluoroquinolone and alcohol only causes an overload.
We often hear of floxies who feel much better so have a few drinks and/or a meal out (fast-food or restaurant) to celebrate, then ask for help because they feel floxed all over again.
A WARNING ABOUT EXERCISE
Be very careful how you move, especially if you have pains in your calves or shoulders, as you may be at risk of tendon ruptures. Don't do anything strenuous, also be aware that if you see a physiotherapist they need to know that normal sports therapy can cause further damage. This paper will help explain the difference between sports injuries and fluoroquinolone damage, so print it off to show any therapist you might see.
Please don't feel you should exercise or, if your muscles and tendons are aching, please don’t think you MUST push through the pain. It's not your usual sort of ‘pulled a muscle’ pain and you'll probably end up doing more damage. In layman’s terms, repairs to sport or accidental injuries are strong and tidy (in neat bundles of fibres): repairs to FQ damage are a weak and tangled mess, more like bad darning.
Some people find that adding Epsom salts (which contain magnesium) to a bath helps ease painful muscles or you can get a magnesium oil which you spray onto the affected area and rub in. With both of these remember our rule of starting low and going slow as too much of either can cause tingling or burning sensations which indicate you’ve overdone it. Leave it for a day or two then start again but use less.
LOOK AFTER YOUR FEET
You'll see “Plantar fasciitis” mentioned a lot. Your plantar fascia is the thick connective tissue which supports the arch on the bottom of the foot and fasciitis means something is wrong here. It's usually considered to be a sports injury along with the tendon and joint problems you will probably experience so, again, beware of seeking treatment from a physiotherapist unless you are absolutely certain they know about fluoroquinolone damage. Normal sports-type treatment can make things very much worse while rest and trying to keep off your feet is generally found to be the best option. Many people find wearing sandals or some kind of slipper with a fleece lining helps – anything that takes pressure off any one part of the foot.
TRY TO REST
Your body has been assaulted by a serious toxin which is affecting every organ and system. It's trying hard to cope with the damage and, we have to say, the human body is remarkable in its ability to recover. The best thing you can do is rest and give your body a chance to get on with it. You may have insomnia (it's another side effect), but at least try to keep still and comfortable. A lot of people find rest is forced upon them because of the pain, so this is a good time to read all about it. Let us know if you find out something new that you think may help others.
RESEARCH
The more you know the better you are equipped to deal with being floxed – and you'll probably end up knowing a whole lot more than your doctor. There are many websites, like ours, set up by floxies in an attempt to help others, plus there are page on forums such as redit and askapatient. Then there are many dedicated groups on Facebook including ours (which is for UK floxies only – see bottom of the page). We’re not recommending any particular group or page but always remember to cross-check any information to see if others are saying the same. There can be some whacky ideas out there, even in academic articles, as well as a lot of common sense, so take care. (We believe everything we say is backed up by research or the lived experiences of many floxies). Also remember that what works for one floxie may not necessarily work for another – everyone is individual, we are all on the same journey but on our own unique pathways.
BOOKS
The only book we know of to fully describe fluoroquinolone toxicity and to offer a guide to both diagnosing and possible ways of treating the symptoms is
Fluoroquinolone-Associated Disability (FQAD) - Pathogenesis, Diagnostics, Therapy and Diagnostic Criteria Side-Effects of Fluoroquinolones
by Stefan Pieper Springer 1st Edition 2021
It’s available from on-line booksellers (e.g. Amazon) and many floxies find it useful to show to their doctor (although it’s not easy-reading for most of us).
CBD Oil
CBD (cannabidiol oil) is mentioned frequently by floxies and many find it helps a lot. This oil is made from cannabis plants specially bred to have a high percentage of relaxing and calming CBD chemicals (as opposed to those bred to have mostly THC - the chemical that creates the 'high'). It's legal in the UK to buy CBD oil and you'll see it's widely available on-line and from health food shops. Many people (not just floxies) use it for pain and anxiety relief, preferring to buy this than to take yet more prescription drugs. CBD had its own receptors in the body so isn’t fighting the FQs whereas antidepressants are competing for the same GABA receptors. While we don't actually recommend it, (or anything) we know of many people who do find it very helpful.
PROTECT YOURSELF
Make sure you don't take any more fluoroquinolones – ever. You're suffering enough now yet if there is a next time your adverse reactions could be very much worse. The only exception is in the case of a life-threatening infection where doctors advise this is your last line of defence.
It’s probably a good idea to wear a medical ID pendant or bracelet stating 'Allergy to fluoroquinolone antibiotics', along with any other medical information. A lot of sufferers dread the thought of being rushed into A&E in an unconscious state and be given an IV drip of a fluoroquinolone. Many also like to try to protect their families in this way – just in case.
FLUORINE OR FLUORIDE?
When you visit other FQ sites you will also come across the debate about whether the fluorine part of fluoroquinolones is toxic in its own right. Severe adverse reactions to the original quinolones, in use from the 1960s, are very well documented so there is no doubt that the quinolone molecule caused huge problems. The addition of a fluorine atom in the 1980s, which enabled the drug to penetrate cells more effectively, created the first fluoroquinolones – although several had to be quickly withdrawn because of the severity of their adverse reactions.
Whether the addition of fluorine simply increased toxicity along with effectivity, or whether it came – and added - its own set of problems, still remains to be finally proved. Although the jury is still out, many affected people decide to avoid fluorine, if at all possible, in other medications and also avoid fluoride e.g. in toothpaste.
We strongly recommend that, in all respects of FQ toxicity, you do your own research, check and cross check the facts, and always remember that no two people are the same – we can’t emphasise this enough. Our website is based on personal and gathered experiences and the only thing we are sure of is that everyone is different and can react differently.
ADVICE FROM GROUP MEMBERS
“Beware of sites which advertise clinics or treatments using IV (intravenous) anything. There are many and the treatments often cost thousands but there is no independent or academic proof that they actually help anyone. ”
"Keep a diary/record of how you're feeling. This will be very useful when discussing your symptoms with various doctors."
"Try to find helpful doctors who 'get the quinolone thing'."
"A doctor or specialist may be so perplexed by your symptoms he may suggest further investigation. Accept any blood tests or other non-invasive tests, but say NO to invasive investigative procedures such as an open muscle biopsy. The results of these are highly likely to be negative but the procedure can cause severe pain and suffering in floxed patients."
"If you can't sleep at night, grab sleep whenever you can. Eat fresh, healthy, colourful food but if you've lost your appetite (which is normal), then eat anything you fancy or can manage. Rest any aching legs, tight muscles, pulling tendons. Don't hobble on sore feet, especially on the sides, unless absolutely necessary. Don't push through pain, especially at first..take pain as a warning. "
"Be very careful when exercising and heed any warning signs during and after it, this is in the context of exercise/sport."
"Reduce brightness of computer screens and wear sunglasses indoors, if eyes are photosensitive."
"Use of heat pads and hot water bottles, as it can be common to feel 'chilled to the bone', no matter how hot the outside temperature. Also (I found) use of wheat bags (heated in microwave) wrapped round painful Achilles, ankles, feet and shins comforting, and resting these painful parts on soft pillows or folded duvets helped. Make a tent structure to raise duvet/sheets from touching painful Achilles, feet etc."
"Drink lots of water."
"There are so many variables so I'll give tips to my old self back in 2012. Do not stand for 30 mins washing the dishes because you feel guilty, it can cause big problems if your legs are tingling. Ditto hanging out washing. Ditto DIY. Ditto housework. This is a powerful drug, so go easy with your body. Get an electric bicycle so that you can get out of the house for fresh air and do a little bit OF walking in a green area or shops. Don't build up your hopes that the doctor will help you, but formulate a care plan with the help of group members and suitable research files."
"Learn to ask for and accept help. Pride and guilt are very powerful feelings, making it difficult (especially for fiercely independent people) to overcome."
"Join a support group (ours!) where you can talk to people who understand and can relate to what you're going through. You'll find those who also suffer insomnia (very common) so in the desperate hours you can connect and chat in the group, and you'll feel less isolated."
Many other groups have long lists of vitamins and minerals that should help you feel better. View with scepticism and caution all advice about supplements, making sure you vet the sources – and beware of sites promising a cure if you send them money first. Often your own research or even instinct will point you towards which supplements you want to try. Everybody is different so it's certainly not a case of one-size fits all. Do not mega dose on anything."