QUINOLONE TOXICITY SUPPORT UK
Now that you've been floxed, what can you do about it?
We wish there was a simple answer, but there isn't.
All we can do is make suggestions and pass on tips that
we've found useful.
It's a natural reaction – something bad is going on in
your body, but stress and panic (and adrenaline) won't
help at all. 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 often prescribed (in error) for the pain caused by Quins, but are known to make things much worse.
Many people find floxing messes up their appetite for a time, so if that 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 foods and drinking alcohol will only add to your toxic overload. Don't give your stomach too much to do, as the antibiotic will have killed off the good bacteria in there as well as the bad. You could start to replenish the good guys by eating natural yoghurt (make sure it says 'probiotic' or 'live cultures') sweetened with a little honey, or have Yakult-type drinks. Healthy eating is important. Many sufferers try to steer clear of foods with lots of additives like preservatives and chemicals.
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 headache.
Some 'floxies' find they can't tolerate smells from chemicals (cleaners, air fresheners, detergents), so cut down on or 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.
A WARNING ABOUT EXERCISE!
Be very careful how you move 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 Quinolone damage, so print it off to show any therapist you might see.
Please don't feel you MUST push through the pain – it's not your usual sort of pain and you'll probably end up doing some damage! Some people find that adding Epsom Salts (which contain magnesium) to a bath helps ease painful muscles.
TRY TO REST!
Your body has been assaulted and it's trying hard to cope with the damage. Rest and let your body get on with it. You may have insomnia (it's normal), 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.
The more you know, the better you are equipped to deal with being floxed – and you'll probably end up knowing more than your doctor! We recommend you go to our friend Lisa at Floxie-Hope
which is a site to give hope and healing and this is what you need right now. Lisa was floxed herself and has written many articles covering many, many aspects of being floxed. There are also a huge number of recovery stories, including Lisa's own, where floxies describe what happened to them and what they did to achieve some kind of recovery. All these stories offer hope and inspiration so please dip into them whenever you need to.
(Friendly warning! We started this UK group partly because we find the US forums can give confusing or conflicting advice, for this reason we advise you to treat Floxie-Hope's and other US forums with caution!)
You will come across an e-book called The Fluoroquinolone Toxicity Solution either on Floxie Hope or from your many web searches. We don't actually recommend buying this book ($40 last time we looked!) as all the information is widely available. However, we know many people like to have a 'reference' book. All we would say is remember that it is written for the US market.
Also, you will see CBD oil (cannabidiol oil) mentioned frequently. This 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. Many sufferers use it for pain and anxiety relief, preferring to buy this than to take yet more prescription drugs. Again, while we don't actually recommend it, we do know of many people who find it very helpful. Please remember, with all suggestions for supplements and other 'remedies', that everyone is different and “one size doesn't fit all”.
Make sure you, your family and loved ones, never take a Quinolone – ever! (The only exception would be a terrible life-threatening infection where the doctors advise this is your last line of defence – the use for which these antibiotics were intended).
It might be a good idea to wear some kind of medical ID pendant or bracelet stating 'No Quinolones' along with any other medical information.
You perhaps could check any other medication you are on, or are given in the future, for fluorine or fluoride. Quinolones are called Fluoroquinolones in the US because they have a fluorine molecule which increases absorbtion of the drug. This comes with its own set of problems. The Fluoride Toxicity Research Collaborative at http://www.slweb.org/ftrcfluorinatedpharm.html has a list of drugs that are fluorinated so you can check if something you're prescribed is ok. For instance, the anti-depressant Citalopram is listed so it would be best not take it as it may add to your trouble. You could ask for Sertraline instead which is not listed so doesn't have a fluorine molecule.
ADVICE FROM GROUP MEMBERS
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 helpful doctor or specialist may be so perplexed by your symptoms he may suggest futher investigation. Accept any blood tests or other non-invasive tests, but say NO to invasive investigational 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.
Organic dairy and meats?
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 $50 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!
Art by Debbie Carol