Symptoms started appearing 1 months after taking antibiotics and it is progressive

Glad you found it.

I suggest that you scroll back through this thread and you may find some info which could help.

I would advise that your husband stops doing the rounds of all the medical disciplines, as so often nothing shows up and then you have the added frustration of not being believed...I think you've found that already, sadly.

The doc should prescribe some decent pain relief - I was given liquid morphine. 

If you look on the health part of this site, or go to the Govt&uk site, you will find the Yellow Card Scheme. It is really important that you report all the Adverse Reactions that your husband is having. You should also report them to the dispensing pharmacy, who has to report directly to the drug company.

Hopefully some others will find you here too and I will be around, if you have any questions...just ask and I'll try to answer.

You can buy a very good ebook from Amazon, called Floxie Hope,,written by Lisa Bloomquist and this may help allay some of your fears.

I know just how scary this is for you both. My first six months were spent in agony and sheer terror, all the time researching these dreadful antibiotics.

Please get it onto both your medical records too,  that you don't  want to be given any FQs, unless it is a last resort.

Hang on in there though I know it is really tough.

Carol

I've just spent all morning reading through first 'the other' pages and then these when I saw you'd directed Christine to this thread.  My husband was floxed a couple of years ago, and he already had MS so it wasn't funny.  Since then I've been telling everyone I can via FB and through personal contact to avoid FQs. I find most people say 'ooh dear, that's dreadful, then promptly glaze over'! 

I'm a member of the QVF group on FB but it is indeed all to do with the US  I've just requested to join the UK closed group (as Woody), so I hope that will be a good place to be.  If it gets enough members it would be good to try and get the same scale of press coverage as the QVF group do.  I strongly believe it's up to us, the sufferers, to raise awareness of the terrible damage these drugs can do as the medical world are certainly not going to get off their bums off their hands and do anything.

Anyway, I wanted to add that I do know a GP who is aware of the dangers of cipro etc as his sister was floxed the year before my husband was. He told me that he very rarely prescribes FQs now, and only as a last resort.  Pity I didn't know that before though!

Yes of course you can call me Carol.

So sorry to hear about your husband.

My GP is aware of the damage caused by FQs; she'd never prescribed them before but was advised by my nurse clinician (for cancer) to give me Levo. Another GP in the practice was also aware of what they can do too but he has now retired. Luckily my GP said she would never prescribe them again.

You are absolutely right when you say that it's up to us to raise awareness and I've spent the last 2.5 years doing that, wherever I can. I've circulated much info and a few petitions on FB and also made friends and family aware. I work on the basis that if I can inform a few people, then they will in turn inform others; relying on the cascade effect. I realised I can't save the world and if I can get the message out to some, then that is better than nothing.

I know QVF well and am aware of the new closed FB group for the UK. If it's the one that has been mentioned above, in this discussion, then it is open to all and isn't purely for UK Floxed; there are members from the U.S. too. I would have preferred it to be solely for the UK.

I have had my fill of FB groups and because I have other serious health problems I am severely limited to what I can do by way of taking action to get this major problem out into the open. I have spoken to the group owner and I was asked to be an Admin but I had to decline for the reasons I've just said. So I'm not sure how much use I can be really. I do what I can and try to keep an eye on this site....awful as it is, with discussions scattered all over the place.

Btw I'm in the North of England - where about are you?

How is your husband now?

Carol

Carol

Take care and keep in touch if you can

Carol

We live in South Lincolnshire, and we're in our early 60s (if that's of any interest!).  I'll briefly give Phil's story in case it helps - or warns - anyone.

Phil was diagnosed with MS about 25 years ago, and it's run the usual course of muscle weakness, fatigue, had to give up work and get about by wheelchair etc.  He had to have a catheter fitted about 8 years ago because his bladder nerves packed up and after 5 years he started to get frequent urine infections.  He was prescribed Cipro for a persistent infection and we thought nothing of it - the infection cleared up and it was just another antibiotic,  I only remember it as being different to the usual ones because he wasn't allowed dairy while he was taking them.

  About 2 years ago he was 'ill', and we suspected an infection although the GP was also changing Phil's anti-depressant at the same time.  Phil was given a course of 'stronger' A-Bs, after which I took  a urine sample in to check the infection had cleared. It was a Friday, and in the afternoon I had a call from the pharmacy to say more A-Bs had been prescribed, so I rushed off to fetch them, thinking it must be bad.  Phil took one straight away, and I noticed it was the same ones where he couldn't have dairy (i.e. Cipro).  He was to have three x 50g tabs a day for a week, so next day he had his three and seemed very poorly - although it's often hard to tell as he spends most of his days in bed anyway!  The following day he had 2 more tabs, then when I went to give him the third one he literally begged me not to give it to him.  He said he'd got a headache like glass in his head, and he felt as if he was lying on knife blades. 

I decided a quick google of Cipro would be the thing to do, but all I got was the usual notes.  Then I googled 'problems with cipro', and suddenly a whole new world opened up!  I nearly cried at what I read and actually scaled down the dreadful details for Phil - I just said perhaps he'd better not take any more.  That night I gave him a couple of evening primrose oil caps and cod liver oil as the Floxie Hope site said the poison is fat soluble.

I phoned the GPs in the morning and discovered that Phil's urine sample had come back on the Saturday as a negative, and that the A-Bs had been prescribed as they thought I'd sent in the sample because his symptoms were persisting, rather than to check it was clear.  Double whammy!

Before Cipro Phil could walk a little with the help of a rollator, now he still can't walk a step, but thankfully can 'lurch' from bed to wheelchair etc, and can look after himself in the bathroom (mostly!).  He had dreadful insomnia for about 6 months, and only recently seems to be managing to sleep for around 6 hours most nights.  The headache went in the end, and he was on anti-depressants anyway, although he did have a bit of a rollercoaster with depression.  I think I got him magnesium and gave him loads of vitamins and oils, but I can't remember exactly what now.  Oh, and he had tinnitus too!

I printed off stuff for the GPs but they didn't seem that bothered or interested, although they did put a message on Phil's notes not to give any A-B unless there was a definite infection.

I felt it was my business to alert the world to this danger, but the world doesn't seem interested either!  I've just left the UK Facebook page as the admin woman who admitted me is seemingly based in the US!  All the posts were about serums and Lymes disease, not my thing really!

I found it ironic when I read that some people who've been floxed are diagnosed with MS because doctors don't really know what's wrong with them!  From our personal point of view, I suppose it's useful that Phil's got a major problem anyway, and my heart aches for those who are suffering from the effects of floxing, but are still having to try and work and can't get a sensible diagnosis.  It's hard to say how much it damaged him because of the MS, but he was certainly stronger before and could concentrate for longer periods.  Who knows?

Sorry if this is more info than was necessary - perhaps the main thing to note was that the first course of Cipro had no ill effects (that we knew of!).  Trying the 'cascade' effect with my friends on FB, but not sure if anyone cares.  Just wondering what a bigger idea might be!

It is very common fo people to have taken previous courses of an FQ and be fine, then take one more tablet and wham! It means they've reached their own tolerance threshold, where damage manifests and they become aware of damage, which has already been happening. I thought I'd just been Floxed in April 2013 but discovered earlier this year, by accident, that I'd been Floxed previously ie between 1991 and 1998, with Nalidixic Acid (Ist generation FQ and found to be carcinogenic in 1998! We were living in Mexico for 7 years and all us women would take Azo Wyntomylin, from time to time for cystitis. We'd never heard of FQs. Then I found it written in an old diary and knew the name, so looked it up. I was horrified and don't know if my symptoms then were due to the FQ or not. I had/have back problems then and also Rheumatoid Arthritis, so it's hard to know! I also discovered my daughter took Cipro there, when she was about 15! She also got Floxed again when she lived in Spain for a few years but didn't know until I found an old prescription from Mexico. When I was Floxed 2.5 years ago, we both remembered when she had strange sensations in her feet ( felt like walking on pebbles and couldn't lift them off the floor and pain in her legs) and eventually joined up the dots. She injured both her hamstrings in Mexico and now we think it was due to the Cipro.

Sorry, I ramble!

I'm glad you want to raise awareness and good timing, as I've been taking to another UK Floxie on FB ( we've known each other a while there) and he's really keen to get something going over here. He has some ideas and will be writing to me again soon(energy and brain fog make us all slow) with his thoughts. He has been suffering for three years.  Now there are three of us wanting to do something more! Yes people don't really retake it in, I agree. It goes in one ear and then straight out again. If you're a reader, I recommend 'Bitter Pills' by Stephen Fried. The first chapter is tough to read though. I have a Floxie friend who takes it to hospitals with her as it gets people talking. I think we need some 'business cards' with names and dangers to hand out.

I suppose we could start yet another FB group; action rather than support (well some mutual support; we are all human) but be really strict on criteria to join...ie you have to be living in the UK. I really think it would have to be purely Brits, as everything gets muddled otherwise. That's a possibility and might make it easier to 'meet'.

I need my weetabix now! 

Take me care of yourself...your husband is lucky to have you to look out for him.

Carol

Thanks for your reply, I'm in Lincolnshire, and my husband is not too bad - given he has MS.  Pre- floxing he could walk a little with a zimmer, but now he can only 'lurch' from bed to wheelchair etc.  Still, at least he can do that - and who knows, maybe it's the MS what dunnit, not the cipro!

I spent most of last night having a good look at the QVF website ("safer pills"), and there's an awful lot of stuff on there.  I saw a while ago that they have a UK ambassador, so I contacted him.  His reply says - much like you - he was floxed, spent a lot of time 2 years ago trying to raise awareness, and now has run out of steam.  He said he limits himself to just emailing or phoning other victims these days.  I haven't spoken to him yet, but I'm thinking there's no need to reinvent the wheel - if QVF have such an informative site we need to use it.  I don't have the time or expertise to set up a new uk one anyway.

I do have the time to volunteer as another UK ambassador (I'd speak to the guy about this), and maybe kick off a new round of trying to get it in the media etc.  QVF also have some excellent videos, so all we need to do is tap into and promote their resources in the UK.

As you say, the discussions are all over the place, and it needs someone (which may be me?!) to find them and point them to QVF for information.  I'm happy to use this site for UK discussions - or (perish the thought!) yet another FB page?

I'm not showing off, or trying to take over - just having ideas!  The winter's looming and I know I'll have time and inclination to do some emails!  What do you think?

M

I know QVF well and yes they do have a lot of promotional material, plus good info. I always used to direct newly Floxed people there. They have generally stayed out of the Fb FQ groups but not always. I also know the UK ambassador (Geoff) and I was approached a while back by the acting QVF Director, to become another UK Anbassador myself but after much thought, I declined, as my health is so bad that I didn't feel I could take anything else on.

I think it would be really good if you felt able to take on such a role; you probably have more energy than those of us who are still dealing with FQ poisoning! I have too many other serious health problems to be consistent; my energy and general health waxes and wanes! It's never particularly good though.

Have you seen all the US TV news items that have been aired over the last 9 months? I think you can still access them and they are good. After the first, so many people contacted the TV channel, that the story really took on a life of its own and many others were aired in various States. I know all the people who took part in them and were interviewed and I know how hard it was for them too.

A couple of us have been throwing ideas around (I think I've mentioned this above) and have talked about the possibility of another UK FB group, merely as a place to meet and purely for UK Floxed. I can't make up my mind about this....I change my mind daily!

i certainly don't think you are showing off or trying to take over! We need someone who has the energy and good health (I hope) to help coordinate the rest of us.

Over the last 2.5 years, I have been trying to 'catch' Floxed people here but it's a huge job, as so many are prescribed FQs for all kinds of health problems. I've missed many, because you'd have to 'follow' pretty much every discussion in every category. 

I definately would always direct everyone to the Floxie Hope site (the EMIS moderator has included the link for this in his pinned post). Floxie Hope has always been consistent and there are some excellent articles about FQT, especially a very recent one, where Lisa has pulled together lots of relevant info. with references too, for those who want to see sources. She also has made podcasts for those who perhaps would prefer to listen rather than read. Her site gives links to these and her e-book.

To reiterate....I would be grateful for anything you feel you'd like to do, to help us stem the flow of FQs. Some want them banned but this is not feasible and nor they should they be. They have their place but they are being prescribed indiscriminately and doctors aren't aware of what's happened to their patients.

Sorry. I'm rambling. 

Keep the ideas coming and you can always send private messages here if you want to discuss specific or sensitive things in more detail.

Thanks for being here...though I wish you had no need to be. I hope your husband continues to be 'ok'

Carol

Yes, we need you Miriam :-)

Carol

You're welcome but no need to thank me; I haven't done anything and wish I could do more.

When I started looking round many forum discussions yesterday and earlier today, I was completely overwhelmed by just how often Cipro and Levo are mentioned. I despaired and wanted to add a warning to every discussion. Of course, this just isn't possible...it would take a lifetime. Also, it's impossible to know if discussions are still active, as when you search, no indication is given. The time scales are so vague and you have to go into a discussion in order to find out and even then you can't really tell.

This is a massive problem and is going to require something massive to reach everyone!

I feel a bit despondent now :-(

Carol

I hate that your doctor discarded you. Sadly, this is so common and so, so wrong!

Carol

Thank you both for being so positive.  You're right, I'm not the one who's been floxed here, so I do have energy - and nowhere to go!

John, Phil's doctor was very shrug shrug when I called him (in a bit of a temper!) to say what had happened.  He said it wasn't necessarily the Cipro as Phil's on a lot of stuff for his MS.  Doctors don't like to be told they're wrong, but I told him anyway (having lived with Phil for 25 years and never seen him in a state like that before!).  He just said there was some old info about cipro having bad effects, but to take no notice.  I put together a sheet of web addresses for him, but heard nothing back - c'est la vie!

And Carol, don't be despondent.  We can only do what we can do, and putting ourselves under pressure won't help anyone.  Slow and steady might be our motto!  I was doing the same yesterday, i.e. googling 'cipro problems uk', and I started reading a forum on healthunlocked. The comments were all dated a while ago - and when I looked at this site initially I was reading stuff that just said 'over a year ago'.  It is all very vague. 

Maybe another problem with FB is that not everyone wants to go on it, and you get all the advertising and stuff.  This site isn't ideal because it takes a while to find your way around.  I was wondering about setting up an email address just for a floxy group - but then it would get hi-jacked, I guess.  What would be best place to set up 'home'?  Any ideas?

I'll email Geoff later, and sound him out.  Then I think I'll get in touch with QVF and see about ambassadoring (sounds grand!) and using their resources.

Hey Ho - taking the plunge now!

M

I've just put a new post up under a new heading. I forget what the heading is now! I've asked if there are people in the UK who've been prescribed an FQ but I wrote, Levofloxacin, Ciprofloxacin and Moxifloxacin with their generic names. I've asked if they were prescribed any other antibiotic first and then if they have any Adverse Reactions.

Unfortunately, I thought I'd put it in a general Antibiotic heading but it's under 'Other Conditions and General Health' I tried to find an 'Infectiob' heading but failed. It will be a miracle if anyone finds it.....let me know if you can!

Question: Where on Healthunlocked did you find this Cipro discussion? I'm in 2 groups there and have talked about FQs....I wonder if they are mine?

Carol

I've had to write a grovelling apology already.

Going to crawl under my stone now.

Carol

Have you seen this pinned post?

https://patient.info/forums/discuss/fluoroquinolone-toxicity-syndrome-427305

I think it wasn't the one you meant though, as you said you'd just posted, but this one was from a year ago (or was it?  Can't remember now!)

Off to write to Geoff now, I'll let you know how I get on.

M

That pinned post was an attempt to get people to gather and post in one place but it didn't work! New people post a new discussion usually and so we are still fragmented.

My post (badly written) today, is under the main heading 'Other Conditions and General Health'

Carol

Carol

Hi Christine 

I'm in Sheffield. How is your husband doing now? I am suffering after a bad experience with cipro and can't stop my legs from shaking and feel dreadful dizzyness/ light headed feeling and it's been a week since I had my last tablet.

I'd be really grateful if you could message me. 

Best wishes 

Richard 

Agai after 20 days I took 20 tablets Cipro500 mg. Again I was feeling shaky and restless  and it was for prostate infection.

6 days gone, but I feel shaky in the chest compression. It is very abnormal. I feel fear. Cannot sleep

Will it go  after a time? Is there any way to get rid off?  

  How I will be treated for prostate infection?

Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

Hi Abdul,

I don't know which country you are in but Ciprofloxacin  should be used with caution in diabetics because it affects your glucose absorption.  The FDA issued a warning about this very recently and your doctor should have known not to give you Cipro or any other Fluoroquinolone (the name of this family of antibiotics ).  The fear you feel and the insomnia are common symptoms from taking Cipro so please try to stay calm, especially at night, remember this is normal and will pass in a few days or weeks. It will all go with time but you must not take any NSAID painkillers such as Ibuprofen or any steroids as they can make things much worse.  Try to relax but also be aware of any new pains that happen in your legs or joints.  Make sure you never take Cipro or any other fluoroquinolone again (the packet label will give the name, as there are very many, but will also say if it's a fluoroquinolone).

There is also a prostate discussion on this forum so if you look there you will find more up to date comments!  Many of the guys there discuss problems with Cipro and alternative methods.

One very important thing is do you know for sure that you have an actual infection or does your doctor just suspect one?  There is a big difference as many men are being treated with this strong antibiotic when they have no infection at all.  Find out what you can about Chronic Pelvic Pain.

While I was taking CIPRO few days after I was feeling shaky and restlessness. I finished it to finish the course. At that time sugar was going little high. I stopped it sept 25, but symptom is not going, 

I am feeling very worse. I have problem in sugar absorbtion, though i am managing sugar by insulin and walking and it is not too high or low.  Theoretically sugar is OK  but I am not feeling OK

Body burning and shaking. Total sugar management is disorganised. This is my idea, right or wrong I do not know.  I have no joint pain or anything like that.

IFor insomnia can I take clonazepam 0.5mg?

Can I take Phosphomycin if infection comes?

Every day I wait to be better, but not yet. I am continuously praying for my recovery