This site is to give HOPE to those who are suffering from Fluoroquinolone Toxicity Syndrome as a result of being poisoned by fluoroquinolone antibiotics – Cipro, Levaquin, Avelox, Floxin, etc. It contains stories of healing.
Cipro, Levaquin, Avelox and all other fluoroquinolones are dangerous drugs that can have devastating effects that cumulatively I’ll refer to as Fluoroquinolone Toxicity Syndrome or Floxing. Fluoroquinolone Toxicity Syndrome/Floxing includes damage to connective tissue (tendons, ligaments, cartilage, fascia, etc.) throughout the body, damage to the nervous systems (central, peripheral and autonomic), and more. The damage done by fluoroquinolone antibiotics can destroy a person’s quality of life or even kill them. Certainly, there is a time and a place for drugs with dangerous side effects. If you find yourself in a septic shock induced coma, fluoroquinolones may save your life. Unfortunately, these drugs are not being reserved for life or death situations. People are being prescribed them for urinary tract infections, suspected prostate infections, upper respiratory infections, as a prophylactic for travelers’ diarrhea, ear infections, pink eye, etc. Thousands of people have suffered needlessly from the devastating effects of fluoroquinolone antibiotics, when another, safer antibiotic could have, and should have, been used.
The damage done by fluoroquinolones is largely unacknowledged by the medical establishment and an accurate diagnosis, compensation and relief are difficult to come by. There is no known cure for Fluoroquinolone Toxicity Syndrome/Floxing. However, many people continue to LIVE after being poisoned by fluroquinolones. They find healing, recovery, perseverance, compassion and hope. These are their stories.
This site is meant to give hope for healing to those who are adversely effected by fluoroquinolones. It is no way meant to disregard the pain of those who are chronically suffering from the horrifying effects of Cipro, Levaquin, Avelox or the other fluoroquinolones. There are people who don’t recover. Their stories are real and they matter. There are also people who are able to recover and I share their stories with the hope that they inspire others, or at least give hope that recovery is possible.
Here is a New York Times article about the dangers of fluoroquinolone antibiotics – http://well.blogs.nytimes.com/2012/09/10/popular-antibiotics-may-carry-serious-side-effects/?_r=0 – more news stories, research papers and other resources can be found on the “Links and Resources” page.
Here is a Facebook group that is a great resource for those going through Fluoroquinolone Toxicity – https://www.facebook.com/groups/floxies/
Featured post – I’m floxed. Now what?
The Fluoroquinolone Toxicity Solution Ebook has helped many Floxies to recover, including Daniel, Cindy and Ruth. As a bonus, you will also receive The Floxie Food Guide – a book of diet guidelines to help you through fluoroquinolone toxicity:
thank you L, I think the biggest thing I need to try to deal with is my worrying and anxiety. my anxiety just keeps thinking that I mess myself up, because I didn’t really take the antibiotics right I was suppose to take two doses but only took one for some days, I don’t know if that was good or bad. I apologize if I’m not the right demographic, my symptoms are pretty much Childs play compare to you and others. I hope and prey you all can find relive and get better.
Don’t consider any symptom “child’s play”. Take them all seriously and win over them by doing the right things.
John,Amoxocilin depletes your magnesium.This causes,among other things.anxiety. Worrying about this anxiety feelings makes things worse because this brings even more anxiety.
First,and most important thing to do,for you,is supplementing magnesium.Magnesium Citrate is a good start (easy to find and with a reasonably good uptake).Even better is Magnesium Bisglycinate,with a superieur uptake,
thanks don, I will. its just good that I can get some reassurance and not feel alone in feeling like this.
but I’m curious is clarithromycin considers safe for the majority of people taking it?
I don’t know. But unlike the fluoroquinolones, side effects are not permanent so that should put your mind at ease. In the future, just try to avoid all antibiotics when possible. There are natural alternatives for many issues. EG for sinus infection, throat issues, flu…I take an organic oil of oregano sublingually. Colloidal silver is another option, as is olive leaf extract. I had my life devastated with cipro thanks to just a urinary tract infection. Mind boggling. I will never be the same. However since then, I went to a female naturopath who gave me a protocol for treating UTIs without antibiotics. Sadly, all the good stuff, including natural practitioners, like NDs, acupuncturists, are not covered by insurance. But not having to deal with all the chemicals that western medicine wants to throw at you, I feel there is no choice.
I’d like to correct you on this.In 2004 I had a AB-course with Amoxicilline and Metronidazole.and this caused nerve damage.Large parts of my skin,mainly on arms,legs and feet,but also on on parts of my back and belly aren’t sensitive to soft rubbing anymore,and after the Cipro,2 years ago,it’s got worse. Also,since 2004,spots where my clothing puts pressure on my skin (band of my trousers,and of my socks) start itching terribely and swell,get red,as soon as I take off the pressure (taking of my clothes before going to sleep).After a while (30+ minutes) the swelling and itching slowly disappears (also nerve damage?). These symptoms,and others,like the skin problems,got better over the years but after the Cipro,they are back,and some even got worse.
After the AB course in 2004 I got floaters in my left eye as well.Those ,too,whee almost gone untill I got Cipro.But,even worse than that,my right eye,which escaped the havoc from the Amox and the Metronidazole,started living his own live,about a year after Cipro.Some days it’s not so severe,but on other days it won’t cooperate with my left eye and my vision constantly turns to double view.That was my “good’ eye. My left eye,now,not only has floaters but I can’t see sharp nearby anymore,and even at a distance of a few meters or more it’s not focussing quite well.In both eyes,now and then,I get a pain like somebody sticking an ice-pick in them.
More and more research shows that AB’s should ONLY be used for life-threathening cases.Not only because of the risk of creating resistance in bacteria but also because ALL AB’s have potentially devastating effects on people’s health,direct and indirect.After all they are (neuro-)toxins,for both bacteria,people and animals.
I agree re avoiding antibiotics whenever possible. As for side effects, I am just reiterating what I have found. I believe it was on this site that I read flqs were the only antibiotics that cause PERMANENT side effects. If you do an online search of “antibiotics that cause permanent side effects” only flqs come up. I don’t want to argue with you about this, but I don’t want to be an alarmist either.
Does anyone have any tips for treating tendinitis around the eye? The orbital tendinitis also causes the orbital muscle to swell. Ophthalmologists have no suggestions, except for steroids. Steam, cold , hot, massage? Any ideas for treating a tendon and inflamed muscle in this area?
What are the symptoms of orbital tendonitis?
I just replied to you, and my reply disappeared – strange. Symptoms are mainly aching behind the eye, tightness behind the eye, sometimes also swelling of the eye muscle due to the tendon issue. i also had severe light sensitivity at the worst peak of it.
“Trochleitis may be isolated (occur alone or with migraine) or develop in association with an inflammatory condition, such as lupus or arthritis . Signs and symptoms include aching and/or stabbing pain in the inner orbit of the eye (e.g., near the nose and inner eyebrow).” Usually, a steroid injection is given in the upper orbit, but of course that is not advised for floxies.
Has anything you tried helped?
Ayurvedic medicine advocates using castor oil in the eyes. Just a drop on your finger and put it in the eye. Everything looks blurry for a minute, but it clears up and feels good. This procedure has helped my vision a lot. I’m not sure if it will help the tendons, but I believe it might.
What brand of castor oil did you use? Thanks.
thanks guys, I believe I got lucky because I don’t notice any other symptoms, my anxiety levels are about the same as before I took the medicine. it just sometimes i need to learn to get off the computer lol. yeah the only thing I have is a weird built up gas in my stomach that comes and goes, but i properly just need some probiotics. the doctor never told me about it so i have to learn the hard way.
Doctors are very short on recommending anything that they can’t write a prescription for. In 57 years of being prescribed antibiotics by the ton. Yes I do mean by the ton. I was on Septra/Bactrim for 18 months at one time. Not one doctor ever recommended that I be taking probiotics, eating yogurt or fermented foods to help keep the good flora up in my gut. Shameful on their part but seems to be a fact.
yeah I was reading luckarz story and he took clarithromycin, and it freak me the heck out. but I try to remember everyone is different.
yeah I here you don, I had to learn all this stuff about by myself. but I look on the bright side, I am lucky that I wasn’t prescribe any of that hard poison, who knows maybe in the future. but I will try my hardest to stay away from any antibiotics, or any other drugs for that matter. being 20 is way to young to have your heath stolen, best wishes and hope you finally find some relief.
It’s magnesium folks. Cipro depletes magnesium at the mitochondrial level. Most Canadian physicians know this now. I went from being wheelchair bound to walking and recovery once doctors started me on magnesium regimen.
Magnesium is important, but if that were the only answer, we would all be well by now. WE ALL have taken a lot of magnesium It’s not only that. Far from it.
How much did you take and in what form?
800 mg a day for a couple years…many different types…threonate, orotate, taurate…you name it. Not all of us have just joint issues. My heart, eyes, respiratory system and more were ravaged. Just look through posts here. Read others stories. You got lucky. I also have had over a 100 IVs, including myers, which has massive amounts of mag that you can not take orally….
L, what type of eye issues did you experience?
OH, where to begin. The morning after the first pill (before I knew what was happening) I woke up to dozens of floaters. I thought it was just a weird one-off occurrence. I took my flqs (and steroids!) the next. The following morning, there were so many floaters that I was afraid I had a detached retina and raced to the eye doctor. I didn’t. But as the weeks went on there were more and more, to where it was like looking through gauze or a scarf. Then I just started losing visual acuity. I couldn’t see more than a couple feet in front of me. (One of my guilty pleasures had been the show Storage Wars, and in the corner of the screen they would keep a running talley of how much the items were worth. I had no problem seeing that before cipro. AFTER, I could not even make out the faces of the people to distinguish who they were.) Then in addition the regular line floaters I got dozens (hundreds?) of little black speck bug-like floaters. If I looked at a wall or the floor it would literally appear to be covered with them. I recall one day I went to costo with a friend who was picking up an RX for me. By that point, she had to help me walk. I remember standing in the front part of the store, looking down at the white tile floor, and as far as I could see, it was just covered with little black dots. I just stood there and cried.)
Then I went to a retinal specialist and he told me I had early stage macular degeneration, which has been linked to cipro. Now they are also concerned about an area in one eye where it appears that the retina is pulling away from the vitreous. I go back soon to have it rechecked and see if I need surgery. IT really sucks because I am over 3 years out, and cipro still keeps putting the breaks on my life.
My vision returned somewhat. One eye that had been 20/20 is now 20/60 and the other eye went from 20/30 to 2/40, which could have just been normal changes. I still get floaters but nowhere near as bad as they were. I am still very sensitive to sunlight and fluorescent lighting. It’s disturbing, almost as if a shade is pulled.
L, I am so sorry that happened to you. I too had eye issues, but of a different nature, mine were orbital tendon issues, which seems to be less common. I hope within the next year, you have improved dramatically, it does happen!
Thanks. I just hope I don’t need surgery. And believe it or not there is someone whose eyes were worse than mine. Oh—I forgot another detail. For a while I was seeing two different images. NOT double vision but a different picture from each eye, because my brain was not melding them together…something we do all day without even realizing it. However, there is someone else who was seeing MULTIPLE images and had to wear special goggles. This stuff is just so mind-numbingly toxic.
“This stuff is just so mind-numbingly toxic”. YUP.
David, could you please tell us more – the regimen, types, doses of each type and any Canadian Physicians that we might contact. Thank you
guys I don’t mean to alarm you, but just the past hour, I started notice my legs feeling weird like I just walk for hours,. idk I have been laying in bed all the time, stress out. so I finally went out and walk for a good bit yesterday, could this just be my muscles acting up?
remember I didn’t take any fluroa antibiotics
I’m new to this site and as a floxie. Five weeks ago I was given a six-day course of Ciprofloxacin (2 x 500mg per day) after a prostate biopsy. Knowing nothing about the dangers of the drug I put up with spasmodic muscle pains and bruising which I thought would go away. With what little research I’ve done, I’m now taking a probiotic, 250 mg of Magnesium and a high dose of Vitamin B12 each day wondering what else I should be taking or doing, perhaps using epsom salts in my baths. Pain, which has only been low grade, and bruising greatly improved until I started to introduce soya yoghurt into my diet two days ago. It may be coincidence but the muscle pain has flared up again. I also need to see an optician because, it may be my imagination but my eye prescription seems to have changed recently. Any thoughts or advice would be welcome from those who have travelled this journey before me. Does exercise help or make things worse? By the way, I’m 63. Many thanks.
Hey Mike! I think exercise helps a lot. You may feel sharp pains in random places when exercising, but I think it’s part of the medicine leaving the tissue. I think jogging or anything that gets the blood pumping is best, and please listen to your body. You shouldn’t stop exercising at every little pang, but if you feel anything ominous in the Achilles you should stop. As far as Magnesium, you should up your dosage to at least 800 mg, and reduce it if it causes diarrhea. ALso, be sure you are taking Mag Glycinate or something besides Mag.Oxide which is useless. (supposedly) – – – Maybe take vit. d3 too – Other than that, there really isn’t anything you can do but let time heal, keep a positive attitude as much as you can , and push yourself to stay active as much as possible. Most people heal, but it takes more time than some would like. Oh, and don’t take anti-inflammatory or steroids, supposedly floxies react badly to both.
Sorry, but no, no, no. Bad advice. Flqs eat through all connective tissue, including muscle, tendon, meniscus, etc. Any exercise early on, if you are already experiencing other side effects, should be done very gingerly. I had pain and popping in my knees early on. Within about two months, I could not take the stairs. Found out months later there were tears to both meniscus. You want your body to get stronger before attempting anything vigorous.
Different floxies swear exercise helps, I’ve read stories on this site. Exercise helped me, but maybe not for everyone. I also think it matters if you were exercising prior, I don’t know, but it helps some of us. Everyone is different and must listen to their bodies. And, yes, I agree FLQ are terrible for connective tissue, so mindful and careful exercise is a must, if you do exercise.
and yes….great idea to add D. Most of us, even those not floxed are low on it. Been shown to be the best way to avoid the flu too.
Oh, and regarding my suggestion for exercise, I should say I only took one 500 mg pill! One pill lead to awful experiences, but not as bad as some peoples. I I probably was not as floxed as someone who took a full course or had an IV, so that may be why I was able to get some benefit from exercise. Age and amount taken , and physical condition prior, probably play some part in side effects and recovery.
Yeah we are all so different. But I started getting side effects after just one pill. Wish I learned about flq toxicity before I took 3 more. There was a book written by an investigative journalist, Stephen Fried, DECADES ago, called Bitter Pills. He lost his wife to a psychotic break for 5 years, after she took just one pill of an earlier quinolone.
I have the book and have read part of it. Very interesting blow by blow description of his ordeal.
I wrote a book while I was struggling to come back to life. I knew I couldn’t have it published on my own, and I didn’t want to self-publish, so I contacted him and asked if he would be interested in co-authoring it. He wrote me back a lovely reply, but said he never ever wanted to write anything about the pharmaceutical industry again. Who could blame him.
Wow, one pill causing physiological issues! I wish there were more info about age/gender/dosage in relation to effects. I know my grandmother was floxed, and then developed mac.degneration within weeks. She was older, and that is why I think she had more severe eye issues.
I would up your magnesium. There are many different forms you can try so you don’t get the laxative effect. I like orotate, taurate,, glycinate. (My first year or two I took up to 800 mg a day.) Also make sure you do NOT take any NSAIDs or steroids. Eat clean. organic fruits and veg when you can, and meats that do not have antibiotics. The late Dr Jay Cohen also recommended E as well (I never did add that since I had SO many supplements.) Go easy exercise wise. If/when any issues come up, I would not hold out any hope of getting good information from a regular MD (or even be believed that the flq caused the damage.) I would seek out an integrative or functional MD, an ND, acupuncuritst, Dr of traditional Chinese medicine, etc.
Thanks for all the input. As far as exercise is concerned I was considering getting a treadmill for walking rather than jogging and I still might do while keeping an eye on my body. Nothing strenuous though! I Will avoid NSAIDS and steroids. As for clean organic foods and the kinds of therapist you suggest L, I live on an island, remote from cities or large towns so those kinds of choices are not possible. I live on a very low income right now and, even if they were available, they’re expensive . . . as are supplements when you’re taking a bunch of them. I’ve never heard of orotate or taurate. Right now I’m taking a mixture of citrate, oxide and malate but can find citrate that isn’t desperately expensive. I’m wondering about getting The Fluoroquinolone Toxicity Solution but the price puts me off, sadly, and I’m wondering whether I will get as much information through the forum. Thanks for your help.
A comment about magnesium. It is said that magnesium is hard to absorb and that pills are from 4% to 20% effective. Meaning that (depending on the form and the particular pill) one could be absorbing as little as 30+ mg when taking in 800 mg. It is hard to get enough magnesium before the dreaded diarrhea sets in. Dr. Carolyn Dean (who is well versed on the subject of magnesium) says that two liquid forms of magnesium are best because they bypass the digestive system and are absorbed directly into the cells of the body. She recommends Angstrom Magnesium or her product called ReMag. She also recommends that the cheap (spot check) magnesium test be passed and the more reliable RBC magnesium test be used. Just passing on what I have been reading.
Thanks Don M for your thoughts. I appreciate the magnesium problem. I checked out the two products you mention but I’m not sure they’re available in the UK or not. I’m quite certain they will cost far more than I can afford though. You obviously need to have a reasonable income to be floxied:) I wonder how much magnesium one can take in through external sources e.g. epsom salt baths, topical creams or oils. The slight advantage I have (if you can call it that) is that I have to take codeine each day for my migraines and it will work against the diarrhetic properties of magnesium.
Just a P.S. here regarding the 800mg of magnesium I’ve been quoted as the required daily level. On a medical website I came across this:
What happens if I take too much magnesium?
Large doses (more than 400mg) of magnesium may cause an irregular heartbeat, diarrhoea, low blood pressure, breathing problems, confusion, coma and death.
True……….. But usually a floxie has a problem maintaining a magnesium level because of the affects Fluoroquinolones have on it. To little or to much seems to be able to cause similar symptoms. The only way to know for sure is to have the magnesium test done. See my post on that subject.
You said you were quoted 800 mg mag as a required level…now if you got that somewhere else, fine. If you are referring to MY statement re 800 mg, I was telling you that that is how much I personally took. Please understand that we are all giving suggestions, not requirements. This is what Dr Jay Cohen (“How We Can Halt the Cipro and Levaquin Catastrophe: The Worst Medication Disaster In US History”) says regarding magnesium. “The standard recommended daily does of magnesium (this is in the general population) is 400 mg/day. My experience is that higher doses are sometimes necessary for a consistent pharmacologic effect….Although I do not recommend the high dosage of magnesium I took for so many years (he had other health issues) it is often necessary to take increased doses such as 600, 800 or perhaps 1,000 mg/day for months. Alternative practitioners often prescribe these types of doses for hypertension or migraines and it would not be surprising if they are necessary for many months to promote healing of
FTS.” Working with an integrative MD or ND would be helpful, but again that costs money.
The oxide is likely the least effective. I know all this stuff is expensive, but for me there was no choice. I am $40,000 in…but I would have died or still been suffering badly because I was so damaged. So for me it was —do I want to be in debt or still be very sick? No choice.
Availability of items is a problem. I don’t know exactly where you are, but Vitacost delivers a lot of places. If you order $49 worth the shipping is free (at least in the US) and their prices are far lower than any retail store.
I checked out Vitacost and the prices are good but I’m in the UK and when I tried to find out what shipping e.g. Magnesium Citrate to me would be, it was a restricted item. My wife usually travels to the USA to see her family in February so I might be able to get her to bring back a few bottles back but I probably will have to find a supplier over here. Natures Best doesn’t bad but the prices are still very much higher than in the US. I hear what you’re saying but, for us, debt isn’t an option.
Does anyone have suggestions for eye pain and dry eyes. My eye doctor said my eyes look healthy. I just got reading glasses but that only helps some. Very discouraging that the reading glasses didn’t take care of the problem. Has anyone tried castor oil or anything else that helped? Thanks!
Deb………. Regarding your eye problems. Look into this………. https://www.drsamberne.com/
Along with other things he discusses the use of MSM eye drops. Would they work? Maybe.
guys I think I’m starting to have lower back pain due to clarithromycin, help I’m really scared.
John. I think most of us floxies are not as familiar with clairthromycim toxicity to answer a lot of your questions. I will tell you try not to panic. It only makes things worse. I know you are scared and all floxies understand and relate to that. Try and take a deep breath and calm yourself. My suggestion to you would be to try and seek info and advice from Lukasz (floxie story) as he had a reaction to clairthromycim and I think also combined with a FQ?? He would probably be able to help and advise you the most. Try to hang in there and think positive and believe in your healing. I hope Lukasz can help you. Blessings and healing for you
I asked a question awhile ago but I don’t think it posted?? What is the belief or theory about cycling?? It is such a frustrating, discouraging and scary thing to feel somewhat better and then have setbacks or flareups of symptoms. I just wonder how and why this happens? I think most floxies go through this up and down cycling when healing? It of course makes me worry more when symptoms act up after a calm period. I am 16 months out and many of my symptoms are gone or better. I have about 3-4 lingering symptoms that have good days and bad days. I guess this cycling is pretty common and not really something to panic or get discouraged about. I just hope to fully heal and get off of this roller coaster!!! I guess many floxies take about 2 years to get through this. Just going through a worry stage.
Dee, I was just wondering this, because I had ankle symptoms all over again the last few days. I found this: https://floxiehope.com/2018/02/12/persistent-fluoroquinolones-in-the-body-and-delayed-adverse-reactions/
It seems like toxins build up in the system again for whatever reason. I take Magnesium everyday, so there’s obviously more going on that that.
thanks dee, yeah I have read about Lukasz, I have been trying to contact him, please if anyone has any contact with him please let him know, thank you.
you might go to the contact link and ask Lisa to forward your contact information to him.
thanks L and dee, thank you for contacting me. I am hoping and praying everyday for me and for all of you to find some relive soon, its good knowing that I am not alone in this. thank you.
Today an article from Dr.Mercola about the tremendous healing powers of Molecular Hydrogen. This might be (very) usefull for us,floxies.
https://articles.mercola.com/sites/articles/archive/2018/10/21/molecular-hydrogen-benefits.aspx?utm_source=dnl&utm_medium=email&utm_content=art1&utm_campaign=20181021Z2&et_cid=DM242271&et_rid=449887473
Don, where do you get the RBC mag test done? Is it a blood test?
Depends on where you live. In the US there are several places online that the test can be requested without “your” doctor having to order it. Google for the places. Normally the insurance does not want to pay for the RBC magnesium test because it costs more than the “cheap” Magnesium blood test. The reason the RBC test is better is because it tests the magnesium level in the red blood cells. The cheap magnesium test is just a snap shot of the blood at that moment. It is kind of like the blood pressure or blood sugar tests. It can vary from one minute to the next. Sonora Labs (a nation wide lab) has recently stepped into the “order your own” test field. https://www.ultalabtests.com/quest/Shop/Promotion/6030?gclid=EAIaIQobChMI9ODE-NuX3gIVir9kCh3jYwt5EAAYAyAAEgI7-PD_BwE