Supporting my husband through quinolone toxicity

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I hope it's ok that I'm writing this and not my husband. He is aware though and is happy for me to discuss our situation. So far I haven't been able to find any support groups for family/friends of quinolone toxicity sufferers, certainly not in the UK anyway.

My husband was prescribed Ciprofloxacin for possible epididymitis by an Out of Hours GP (over a weekend), had a panic attack after 3 tablets and was then unfortunately prescribed ofloxacin as an alternative by our own surgery (he took these for approx 5 days before stopping them too). He continued to suffer dreadful panic attacks and awful anxiety, along with insomnia and overwhelming suicidal thoughts and night sweats. After going round in circles for 3 months, with numerous emergency GP appointments, 2 visits to A&E and 2 mental health assessments, my mother-in-law kindly paid for my husband to see a private psychiatrist.  Having never suffered from any mental health problems before (and the local mental health team twice saying he did not have a mental health problem) the psychiatrist diagnosed severe depression due to quinolone toxicity. He is now on high-dose antidepressants and over the last 4 months has improved no end. He still has days where he feels anxious and others when he is very tearful. Luckily he hasn't had any joint problems apart from a slight ache in his knees around Christmas time, which didn't progress to any of the awful symptoms other sufferers describe.  He may have to stay on the antidepressants for some time but it's a small price to pay.  

I read magnesium could help with his night sweats and this seems to be true! I buy as much organic food as is affordable, cook with spring water as much as possible, buy fluoride-free toothpaste etc.

I would be grateful for any dietary advice that has helped others suffering with quinolone toxicity. Many thanks.

 

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8 Replies

  • Posted

    Hi Alison. There is a closed fb site in the UK, if you search for quinolone toxicity support you will be able to join, they are a very helpful group.
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  • Posted

    Hi Alison, and welcome to my world! My husband was floxed about 3 years ago and since then I've been trying to find out more about Quinolone Toxicty and to raise awareness about the dangers of doctors liberally handing out Quinolones.

    The closed FB group Mark mentioned above was started by me and other sufferers, to give us a space to talk openly about our problems and to support each other.  If you don't use face book the Emis moderator here has a pinned notice on the thread Fluoroquinolone Toxicity Syndrome where he gives the addresses of a few helpful sites, plus our page. Search for that heading and you'll see his thread listed, along with the many discussions that I and others have been having over the last few years.

      I don't think our email address appears (we ask people to email before we admit them to the group) and I can't give you the address as this forum only allows approved links to be published in these threads (a good but annoying system!)  You can 'personal-message' me by clicking on the little grey envelope icon that appears on the left below my stars.

    Please do get in touch as, although we can't offer a cure, it helps to know what others are going through - also, we sometimes have a good laugh! We hope to have our website up and running very soon and there should be an article about floxing in the Daily Mail any day now. 

    I'll look out for your reply, you sound like you're doing all the right things by the way,

    Best wishes,

    Miriam

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  • Posted

    Although many of the internet sites can be very frightening for floxies there is one site I have found floxiehope which has many stories of hope and recovery. Magnesium is good for anxiety too. You need to look very carefully at the chemical composition of the antidepressant. Some of these have the fluorine molecule. No point buying non fluoride toothpaste if he is ingesting fluorine in the meds.

    FQs disrupt the gut flora more than any other antibiotic so it is essential to restore this. Disrupted gut flora can be behind mental issues even in people not poisoned with FQs. You should also get his vitamin d levels checked and supplement if low. Take no notice of the UK " norms". They are the lowest in Europe which is a disgrace. Low vit d can contribute enormously to how badly floxing symptoms feel. Aim for a level around 125 nml/l.

    There are all sorts of supplements suggested for floxies but what works for some has no effect in others. I personally have found Curcumin ( found in turmeric ) helpful. And make sure you know the names of all the FQs so as never to take one again! I would also be on the look out for any tendon issues as these can present months even years after the initial floxing.

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    • Posted

      Thank you Madge for your helpful advice.  

      I will check out his antidepressants, I hadn't thought of them possibly containing fluoride.

      Andy had a number of blood tests about 5 months ago (all normal, which I think is usually the case?) but they did not check his Vitamin D levels. 

      I'll certainly be getting some turmeric.  Is there a recommended amount to have?  I'll do a bit of research.

      Thank you again.

      Alison

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  • Posted

    Hi Alison

    So sorry to hear about your husband, though as Miriam says, you're doing all the right things and good to know the anti-depressants are helping. Sometimes it's a case of having to risk something that might cause further harm but as everyone reacts differently, you can't always judge what's best to do/take, based on others' experience.

    As your husband is better than he was, I'd be very wary of changing too much - especially not the anti depressants. I'm not a dr, though having been floxed the last time, 3 years ago and researched loads, I believe if you find something that seems to be working, it's better to stick with it.

    Floxie Hope is a great site, though do be careful if you look at the 'forum' space not to be confused by many conlicting and sometimes less than perfect 'advice'. Nothing has trully been tried and tested - it's all anecdotal.

    One thing's certain though, he must never take another Quinolone, unless it's a life and death/last resort situation.

    I hope to meet your husband in the group asap; I'm sure it will help both of you. I know another group member and Miriam have PM'd you here giving you our email address for your husband to drop us a quick line and I've messaged him through Facebook, also giving him the email address but messages there can be hard to find.

    Take care of yourself too

    Plodding on

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    • Posted

      I am not on Facebook but have corresponded with Myriam through this forum. Have you found anything particularly helpful for the symptoms? It is true that many different things are suggested by people on Floxiehope and I suspect many of them are not available in Europe. My main problem is costochondritis. I suspect the FQ has damaged the cartilage between my ribs. Some mornings I wake up and feel as if someone has come inthe night and given me a good kicking! I have had this for many years but not constantly. It comes and goes. I have some tendonitis as well but it does not bother me as much as the rib pain.
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