Ciprofloxacin poisoning?

I'm so sorry to hear this but your story is also quite common.  Cipro is often given for diverticulitis and it does clear up the infection but it also strips your gut of all your good bacteria - which means you have a job to process anything that gets down there.  When you say you can't survive without pills do you mean you still take Cipro now?

Which country are you in?  Have you joined a support group for Cipro?  Also for DD?  The info in these groups is often way better than you get from a doctor as these people are actually living with the problems!

Hi Carlina,

I have been interested in Cipro and the fluoroquinolone group in general for about 3 years.  I have read the stories of hundreds of people who have been affected by them including several who owe their life to taking one of them but were also damaged by it. 

Sun exposure is definitely an averse reaction (ADR) , it's mentioned on both the patient leaflet and the doctor's leaflets so your doctor must be one of these who hasn't seen it happen therefore it never happens. I bet he's not willing to say if your other problems are down to the Cipro either?

I am willing to say they very likely are all caused by the Cipro.  One of the things Cipro does is destroy the integrity of your collagen.  You have collagen of different types in just about every part of your body, so your ribs (cartilage), bursae (synovial or connective type membrane sacs), tendons, all these are types of collagen.  Cipro (and the other FQs) prevent collagen cells from replicating.  They are normally arranged in neat bundles (fibres) but, if they're damaged - which they easily are because of the Cipro, they then can't repair themselves as they would in a normal sports type injury.  There are better descriptions of this on line but I'm trying to be brief.  Damage also causes the inflammation-type pain.  And this is not the only way in which the FQs harm us.

Many Fibromyalgia patients would probably find their symptoms started after a trauma, serious infection or similar.  These are situations where an FQ might be given - whether the patient realises/remembers it or not. I don't think it's a coincidence that Fibro/ME and CFS became more common after the early 90s - just as Cipro was getting very popular!  It's ADRs can be delayed by months so many people forget about it, doctors don't ask about it - and who would think an antibiotic could cause agonising muscle and joint pains months after you took it?  Ridiculous!

The only symptom you have that I'm not familiar with is the spot on your tongue.  I've heard of tingling on the tongue but not this - I'll check it out!

I think you can regard yourself as Floxed.  After 2.5 years I would be surprised if you weren't but I have heard of people taking it for much longer.  Maybe check out the discussions on here - the one started by the EMIS moderator has some useful addresses. Avoid NSAIDs such as Ibuprofen and also Steroids - they can make things very much worse.  Take care not to over-exercise, and be warned by any aching tendon or joint that it's time to stop.

Good luck.

I am still having tight pain behind the eyes every few days.  The eye doctor says the nerve, eye, retina appear healthy, and she can't explain what may be happening.  It feels like tightness in behind the eye ball, mostly in the upper lid area.  The first time it happened I had severe tightness that did not allow me to move my eye normally. Now when this issue happens, it is mostly just severe light sensitivity, a felling of pressure and inflammation, and a dull ache behind the eye and in the temple area.  Could this be the result of tendons tightening? Is it the optical nerve being irritated?  God Forbid, is there something occurring with the connective tissues?  Why would it come and go, and no visible damage show in an eye examination. I do not understand well enough how Cipro works to figure out what is happening with my eyes. 

You will continue to have eye pain. It eventually will go away. Mine is just about gone and it’s been almost 3 years.

Hi Miriam.

I agree with you.

I'd like to tell you a bit more for your research.

It is interesting that I was given supplements by a naturopath which I continue to take because I believe they ease my symptoms. He gave them to me for completely different reasons but I still take them. I am not usually good at taking supplements but really notice a difference if I miss these. Calcium, magnesium D3 & K2.

Also; Supercollagen +C. And Natures Way Mega B executive stress (with B12 50 mg).

If I miss these my tongue flares up amongst other things.

After being diagnosed with fibromyalgia over a year ago it was recommended I take one of two types of Fibro meds. However

I told a GP I didn't want to take either of them as the side effects looked scarier than the condition with an uncertain small benefit so I did not want to further poison my body with no guarantee it was even going to help. I wrote a long list of my symptoms that I felt matched B12 deficiency.

He looked at me as though I were fool. He was not interested in my research nor my list.

Interestingly the rheumatologist has asked me if I had any problems with my tongue and I said yes. I can only assume he believed this was a fibromyalgia thing but he didn't ask specifics so I don't really know.

As for anti-inflammatories. I was told to stop them a few years ago because of suspected minor lesion in duodenum. (viewed on double scope)

And I can't take any pain meds either.

Occasionally ...perhaps monthly... when muscle spasms get severe...I have a stiff drink but I'm not keen on resorting to alcohol.

And rarely... I will take an anti inflammatory if I'm having a specially bad day and have a lot to get through.

Thanks for contributing to this forum.

I appreciate it.

C

Hi Chris, may I ask, how much Cipro did you take?  And, did you ever find out what was causing your eye pain?  Did you have light sensitivity? 

Hi Carlina,

Thanks very much for this information - every little helps!

Your naturopath perhaps knew what he was doing as Cipro (and the other FQs) chelate (i.e. 'steal' your magnesium, calcium and other minerals.  Magnesium in particular is usually recommended as a 'must take' supplement as a deficiency quickly produces symptoms that are synonymous with being floxed. D3 and K2 together are also  recommended. Did he know you'd been on so much Cipro? You should continue to take these and the others you mention for as long as you like as no one yet knows how long the toxins will continue to be affecting you.

I haven't found much yet that specifically relates to tongue problems and FQs but I'm getting the genral impression that sore spots can be caused by immune system problems or deficiencies of some kind. If you notice it comes and goes along with your supplements it's probably a good idea to keep on with them!

What were the Fibro meds?  If they were something like Gabapentin or Lyrica, well done for not taking them - they can be worse to come off than heroin, so I'm told.

Some floxies are ok with a little alcohol while others find it makes their symptoms so much worse.  I guess that it all depends on how well your liver is coping. It will be constantly struggling to get rid of the toxins but the FQ will have damaged its cells anyway to some extent so it may be compromised. You sound like you know what you are doing and are going with the flow so good on you.  I hope you find your symptoms lessen and you have fewer and fewer bad days.

There is a support group in Oz (if that's where you are). I'm in touch with the person that runs it and can get some details if you're interested.

Are you in any Fibro groups?  If you are please spread the word about the Cipro/FQ connection and ask people if they recall an antibiotic before their symptoms started.  I think in years to come the world will be shocked at how many Fibro/CFS/ME people are actually FQ victims.

Hi Ana,

Your doctor can't explain it but I bet, if you mention Cipro, she'll say that can't be the cause!  Oh yes it can!  All the different parts of the eye contain one or other of the main types of collagen apart from the retina and some fibres. If Cipro affects your collagen it can affect your eye - and just about any other bits of you!

What this means is that you may have problems for some time (as expressed in Chris's reply to you). Many people experience pain, lack of movement, double or blurred vision etc.  Sometimes one thing goes then another starts up. Very few studies have been done and it seems that no one particularly cares  - or understands.  Some specialists are sympathetic but few can offer any advice.  There is a specialist group called fluoroquinolone induced vision damages on a popular social media site with book in its name.  You could try to find more information there, or at least chat to people who understand. Many of them have a better idea of what has happened than I do. You may get useful information for your eye doctor - which might help her to help you.

Hi 

My husband has had a tingling tongue since the day he took the cipro 

Can anyone suggest what to take that may stop it 

I took 60, 500mg tablets. More than most folks. My tolerance was 5 days. Everyone has a tolerance level. 

My eye doctor couldn’t find anything but my gastro doctor said it’s nerve damage from the Cipro. He said it could be temporary or permanent. Same with my colon issues which are still going on today 20 months later. I feel a lot better but time heals along with probiotics, soaking feet, staying busy, exercise, walking and drinking plenty of water. Most of the things people on these post said to try didn’t work for me because I am one of the very extreme cases. I had light sensitivity but that actually went away in 12 months. 

Thanks for your reply.  I, too, am guessing the eye thing is due to nerve irritation or inflammation from somewhere in the eye.  It doesn't make sense that it comes and gos, and damage isn't detectable in an examination.  I am glad you are doing better!  One pill has given me the scare of a lifetime, I can't imagine how strong you must be to withstand 60!

Thanks for the suggestion - I will search for that group.  I do know that Cipro is infamous for attacking collagen and connective tissue, as well as Mitochondria. I guess, the most confusing part is how the eye pain/lightsensitivity/perceived eye inflammation comes and goes.  It is not indicative of structural damage, but moreso of an immune response, bouts of inflammation, or something having to do with the nerve being irritated. If I find any answers, I will return to this page and post, so that another reader may aid from the information.  

I was a healthy military veteran that was in the medical field. That helped a lot but it occurred after I retired in 2015.

60 pills was a lot. My floxing symptoms started after 5-6 days. So my tolerance was 10-12 pills. 

I had a laundry list of issues. Ended up with kidney stones and a hernia with repair surgery because I was so sick and colon was so damaged. I am almost 100%. I would say I am a solid 90%. 5% is colon issues and 5% with some pain behind my eyes that occurs about a few times a month. Ohh and my healing for simple things has really slowed down again. It was getting better but now a scratch from a dog that used to take a few days to heal now take 10-14 days. 

The nerve sheaths contain a type of collagen too!  It's all relevant - no one can describe exactly how it causes the damage but it still does!  I didn't mention mitochondria as I don't want to sound too preachy.  You've obviously read up on it a lot - which is all anyone can do.  Such a pity that doctors don't read up on it as well!  Mine said that I shouldn't believe everything I read on the Internet - I think he doesn't understand that us mere mortals can access the same academic papers as the doctors!  I think almost every floxie quickly becomes an expert - much more expert than most doctors anyway.

Anna, is the eye problem your main thing or do you have other symptoms?  That group is great for eye-questions but there are others which deal with just about everything.  There is also a lot of research info posted in the groups which is really helpful and saves you looking!

Please do return to this page - I have no idea what happened to the original 'Mike 7', I like to think he has recovered and moved on, but I'm sure he'd be pleased to think his discussion is continuing.  Not so pleased to think that people are still being harmed by these drugs on a regular basis!

Hi Chris, just wondering about the maths - you say your tolerance was 10-12 pills which looks like you 60 pills divided by 5-6 days.

Or are you saying you kept on taking the 60 pills although your symptoms started after the first 5-6 days (at the usual rate of 2 per day that would be the 10 -12 pills)?  I know many people keep on taking them as their doctor assures them the pain will stop once they stop taking the pills.  Thanks doc!

Educating doctors and all healthcare workers is high on the agenda. This has to stop and the FDA did nothing to help in their 2016 announcement.  They just keep increasing the warnings so that the patient now has to take all responsibility for their own poisoning (you should have read the label!).  In Europe we have just had the EMA hold a public hearing (along the lines of the FDA Nov 2015 hearing). My main task in life is to urge the EMA to take a stronger stance on this and not to go down the FDA route of simply increasing warnings - which is what the manufacturers have generously offered to do.

These are dangerous and potentially disabling drugs and their use should be restricted accordingly.  The sufferers are not 'rare', there are thousands of them, it's just that the FDA/EMA and the rest don't acknowledge them - and don't instruct doctors to restrict the use of these drugs. Patients don't stand a chance, because if they read the warnings and go back to their doc about it the doc will either have a hissy fit or smile and say not to worry, this won't affect you.  He gets his pay cheque whatever the outcome!

Besides which, when drugs are prescribed in hospital we don't see the labels AND I have had fights with staff over medication cos they don't like you questioning .

B12

I take 50 mg a day

I had popping of joints, sharp nerve pains, and busted blood vessels around the knee 48 hours after taking the one (500mg) pill.  I pushed myself through cardio exercise, despite the blood vessels breaking while I ran, as dangerous as this sounds, I truly think it helped drive out most of my issues.  I noticed when I would run, I was getting weird sensations around my knees, and then I would see little blood dots around the knee. Most all of my body issues resolved within 3 weeks.  However, the eye issue has come back several times over the last month.  The issue withe the eyes happened 72 hours after taking the one pill, I ended up in the emergency room with severe light sensitivity, blurry vision, and eye pain.  I had never had any eye issues prior, don't even wear contacts, so it was absolutely the Cipro. Thankfully, my vision restored and the pain lessened, but then the inflammation and light sensitivity has returned several times.  I am certain it is inflammation, during an episode I can actually feel the swelling of the tissue in the upper lid/behind the eyeball.  

Yes I'm in Oz

No I'm not in any groups.

No I was prescribed Collagen+C by naturopath for a diagnosis of permeability of the cells that allows fluid to wander at will.

I self prescribed the other stuff based on bad cramping problems and symptoms that align with B12 deficiency from my own research.

I