Fluoroquinolone Toxicity Syndrome

Hi Sandra, I'm so sorry to hear of the problems you've had after taking all these FQ antibiotics.  I'm going to guess you're in the USA because of the names you use, is that right?  Have you found Floxy Hope yet?  (The address is in the pinned post at the top of this thread).  It's a great site full of useful resources and encouraging stories from people who have been in exactly the same situation as you but have found recovery.  In my experience, time is the best healer but staying away from steroids and NSAIDS and also any drugs containing fluorine (many do) is a good start.  Healthy eating and repairing your gut by taking probiotics (or a good yoghurt) can help while too  much sugar, junk food and alchohol can set off 'flares'.  Don't try and exercise through the pain or you can do more damage.  Gentle exercise is good but stop if you feel any hint of starin anywhere. 

Well done for persevering and getting over the sinusitis without drugs.  Doctors are very keen to prescribe them when they're not really needed.  On the sinusitis thread a guy was posting that taking evening primrose oil (1000mg) every day cured his problems.  I used to always get sinus trouble then took the evening primrose for something else but haven't had a cold affect my sinuses ever since!  Worth a try maybe - and it may be good for the floxing!  Good luck

Miriam,

Thank you for the words of encouragement. Yes I am in the USA.   It took a ling time for me to "get" the connection with theFQ antibiotics and all the other symptoms I was having. Have been taking good Probiotics and eating Yogurt as well. Was going to Physical Therapy but the pain I experienced in the tendons and ligaments of my legs was so bad I would cry.  Gentle is better most definitely.  So happy I found this forum and some answers.  Thank you for responding.

Miriam,

Thank you so much for telling me about Floxi Hope.  It has encouraged me very much to read the stories of people who have overcome this.  It is also encouraging to know other people have had this happen to them.  Most people I tell about it, do not believe it.  I will try the primrose oil too,

God Bless You!

Hi Sandra,

Good to hear from you again and that glad you've found Floxie Hope useful and encouraging.  There are very many research papers and informative articles as well if you want to dig deeper into this murky world of poison!

I hope the primrose oil helps - I take it every day (for 'ladies problems!).

Kenneth Bayer the makers of cipro have sent out a letter stating that cipro should only been given as a life or death options .They say not to use for UTI or sinus infections . There are other antibiotics to take.Really if you have no infection then why take any?

Is this letter for America or is it World Wide?

THIs was America however, I am waiting on a copy from bayer for the uk . The main thing is that they are recognising the permant damage that is being caused from this drug . Please also note the NICE In the uk only receive reactinns to drugs for the first three months . This is ridiculous as FQ can take up to a year and longer sometimes to show any reactions . NICE said that Thai drug has been around since the late 1970's and in my husbands case he had most probably been giving this drug years ago when he had a human bite . Years later he was given it again and hey ho BANG he became sick . I will be getting copies of this letter and will be giving it to pharmacists and GP's and the press

Have you asked Bayer for a copy?

Very often America takes action years ahead of here.

hi gillian. 007.haha

​now the serious stuff. who is it getting a copy from Beyer?

Can I get a copy please. ?

​how can our professional people not know about these things. they really dont like me as i am tryingt my best to not have anything invasive done to me. i need this info to show my research is worth while.

I will get a copy and post it' . I have supplied a link to it earlier

I posted your warning to the prostate Forum as it has been widely prescribed to patients there.

https://patient.info/forums/discuss/cipro-warning-595061?page=0&utm_source=forum&utm_campaign=comment-notification&utm_medium=email#2719078

 

Doctors and surgeons are so protective of their 'I'm the doc and I know best, you know nothing' reputations. I imagine they're taught this at med school and it dates back to the days when only med students and professionals had access to the information.  How often have we been told not to believe everything we read on the Internet?  I asked my doctor if that included peer-reviewed research papers on 'pubmed' and 'G.Scholar' .  He said you have to be selective.  I said 'Duh!' with a dismissive shrug, happy in the knowledge that I've researched ONE topic exceedingly well while he just knows the brief details of many things.  keep up the good work!

Hi Gillian,  I have a copy of this letter.  It was sent out as a response to the FDA decisions about the FQs made in Nov 2015 and followed by an announcement on 26th July 2016.  I have it as a saved image so can't reproduce it here (wouldn't be allowed anyway!), but it basically says the same as the FDA announcement which you can find by searching for it along with the date. 

You are correct in saying it says about not using FQs for UTI and sinus, but it's incorrect to say it's because they (Bayer) are "recognising the permant damage that is being caused from this drug".  They're only doing what the FDA have instructed them to do - they certainly wouldn't have issued this letter of their own free will!

I'll also just say that (in the UK) it's not NICE that receive information about ADRs to drugs but MHRA.  They actively want people to submit Yellow Card Reports and also want people to send in updates.  I have recommended to anyone suffering from FQ damage that they send in an update at least once a year - more often if they want to.  MHRA have told us that they need these updates or they won't know what's actually happening (which is encouraging!).  This applies to all drug reactions, not just GQs of course.  The address for Yellow Card reports is at the top of this thread.  (MHRA also told us they're called Yellow Card as the original cards in 1964 were made from 'war-surplus stock' of yellow card!

It's true that the earliest form of Quins were around in the 70s (as Nalidixic Acid) so very likely that what you say happened is the root cause of your husband's problems. 

If you go to Floxie Hope and put Bayer Letter in the search box it comes up as the first item - you have to open it to see the letter. 

 

I so agree with you 100 percent Miriam.We need honesty  candour and patient feedback in the nhs to reduce the damage incurred ignorantly. Who picks up the pieces, no one.

If you go to Floxie Hope and put Bayer Letter in the search box it comes up as the first item - you have to open it to see the letter. 

If you go to Floxie Hope and put Bayer Letter in the search box it comes up as the first item - you have to open it to see the letter. 

That's so true, John, and they put you through a whole rigmarole of painful tests and procedures before they spit you out at the end saying it's all in your mind!  We're working very hard to get this put right but it'll be a long job.  The more people try to inform their doctors the better - and eveyone affected MUST send in Yellow Card reports regularly (address at the top of this thread) so MHRA can see a clearer picture of what's hapening.  They are listening to us and have already grasped the fact that because doctors are told reactions are 'very rare', they tell the patients that it 'can't be the cipro'. The patients are then put through all the tests to find out what it is - and meanwhile no one reports it as being the Cipro.  Result?  Doctors think reactions are very rare!

Hello Miriam.

you seem to be on the ball. Well done and keep it up. There is another person fighting for other things to do with cancer and healing Dr Lynnice Wedewer. Look her up. I communicate with her quite regularly.

Quite a woman. Read her story. I too am I nteresred in how Dereck has not had the serious side effects from taking so much ciprofloxcine. 

Thanks for being here.

Please think twice before taking these poisonous drugs. Best place for them is in an incinerator in my honest opinion, they now have two black box warnings on them. A dr in US was floxed and suffered mobility problems. He had stem cell therapy treatment that resolved his disability in 6 weeks he says. I can PM the name and video link sounds genuine.was paralysed fr