*The following is an individual’s story of surviving fluoroquinolone toxicity. It is not medical advice. Please see the disclaimer at the bottom of the story. Thank you, and please be cautious with all treatments.
Being “floxed” was a huge and totally unexpected blow to my life but I’m recovering well.
In 2009 I was a very active woman in my 40s. I took no meds regularly and avoided taking any sort of drug unless absolutely necessary. I walked for exercise, often three miles a day. I was strong and healthy.
Part of my healthy lifestyle included a huge spinach salad every day, as well as wheat germ in my yogurt every morning. I found out the hard way that eating large amounts of those healthy substances can cause kidney stones in some people – I ended up in the urgent care clinic in significant pain from a kidney stone, which was a big, unpleasant surprise, but one easily remedied…or so I thought.
Though I had no infection, the doctor gave me one week of Cipro “just in case” I got a kidney or bladder infection from this random kidney stone (I had never had a kidney stone before and haven’t had one since and hadn’t had a bladder infection in probably 25 years). When I picked up the prescription, the pharmacist called me to the counter and read the “black box warning” to me, but honestly, I thought he was just doing this as a courtesy. Since I’ve never had any tendon issues, and since I’m not overly sensitive to drugs, I just figured, “OK, if I develop any side effects of this stuff, I’ll just stop using it and call my doctor.”
I took the Cipro as prescribed, and had no side effects during the week of meds. In fact, the whole little scenario was so drama free that I completely forgot I ever took Cipro – till much later.
Fast forward a few weeks. I noticed that my left ankle seemed a little stiff. Within a few months, I noticed a lump developing, and more pain. Eventually the pain was radiating up the back of my leg, so I went to the doctor, who told me I had tendonitis and put me in an orthopedic boot with instructions to wear it whenever I was walking, and to return in a month.
I went back…no better. The lump was bigger. The doctor prescribed a lift in the boot and another month. This went on for three months – three months of clomping around in a huge orthopedic boot while my calf muscle atrophied and shrunk to next to nothing. In frustration and pain, I switched doctors. My new doctor immediately ordered an MRI which showed that my Achilles tendon was torn – but not in the “usual” way. Nope – it was actually disintegrating. He immediately scheduled surgery to removed the damaged tissue and to rebuild my Achilles tendon. He and I were both perplexed as to why this happened, but we chalked it up to, oh, who knows. I had stepped backwards off a ladder several months before but at the time, I didn’t feel any pain in my ankle, but that was the only incident I could come up with so my doctor shrugged his shoulders and said, “Who knows – maybe that was what started all this.”
The surgery, in 2010, was successful for the most part. Though my left Achilles tendon is permanently swollen and much stiffer, it’s functional and I have nearly full range of motion. However, nothing can replace your “original” Achilles tendon! Five years later and I’m still dealing with a foot that swells at the end of the day, some pain and stiffness, and I will never wear stilettos again!
Besides that, the physical therapy and recovery from this surgery takes MONTHS. MONTHS, often up to a year – and much of it is painful. I gained 15 pounds during that year. It took me another year to lose that weight.
Fast forward to 2013 or so. I began having pain in my right Achilles tendon. A hauntingly familiar sort of pain, But I had had absolutely zero injuries or falls or anything like that. I chalked it up to overuse due to the weakness of my left leg (my calf was still significantly smaller on my left leg even though I was working it out). But over the next few months, I was horrified to see that same sort of telltale lump appear on the right Achilles tendon. I went back to my doctor, who immediately ordered an MRI and who immediately then scheduled surgery to repair my right Achilles tendon which was doing exactly what the left one had done – disintegrating.
At this point, my orthopedic surgeon began looking in earnest for a reason for this to happen to me. I did not have any sort of arthritis. I did not have any sort of injury. I did not have any sort of tendon or joint pain. No family history of this sort of thing either. It was a mystery.
Then he asked me to look back over my history and tell him if I had ever taken any fluoroquinolones. BINGO. That one round of Cipro was my ONLY risk factor and the only logical answer as to why both my Achilles tendons had fallen apart.
More research is showing that the long term effects of these drugs can cause damage long after the dosage has been discontinued. This is where my anger comes in. When I took Cipro, there was nothing in the warnings to tell me that I might have damage and not even know it while I was taking the drug – that by the time I realized what it had done to my body, it would be too late to reverse the damage. I had no idea that the tendon damage could take weeks, months, YEARS to manifest – but that’s how it affected me.
The really scary thing is that now I am experiencing significant pain in my hands and thumbs. My orthopedic surgeon has warned me that I am at much higher risk for future tendon damage, and I believe it.
If there is any good news to this, it’s that the surgery did apparently fix my Achilles tendons for the most part. I was disabled for a total of nearly two years. Both my Achilles tendons are permanently scarred and swollen. Both my feet swell and hurt after walking more than 7000 steps per day (I wear a pedometer to “warn” myself of when I’m reaching my “foot limit” because stamina wise I could walk for probably ten miles a day – but my feet can’t take it). And I am worried about my hands.
The surgery gave me back my range of motion (nearly 100 percent on one ankle and fully 100 percent on the other – woohoo!). It was very successful. But it wasn’t just the surgery – Physical therapy is CRITICAL and each ankle required PT at least twice a week for several months. I also had the Graston technique done on both scars to minimize scar tissue. This is painful but very effective and I highly recommend getting physical therapy from a facility with therapists who specialize in this treatment.
I also used vitamin E oil on both scars and that helped them heal as well.
There are some excellent online videos that show yoga for people wearing casts or orthopedic boots. I LOVED doing yoga every evening in a darkened room – it kept me active and limber. I also did some floor calisthenics and upper body workouts. But my most healing treatment after surgery was my two DOGS. Every night when I would get on the floor to do yoga, they would come running in and begin impeding me GREATLY. I mean, they were all in my way, but they were giving me love. They seemed to know that I was down on that floor trying to heal myself and they were there for one reason – to shower me with healing love. They would often lay against me and it almost felt like they were pushing their love into me! I used to call it Doga instead of Yoga because both my 75 pound dogs insisted on being right there with me on that floor.
My orthopedic surgeon told me that I am at a higher risk for future tendon issues, and I do worry about my hands and especially my thumbs sometimes – they seem to hurt a lot more than is probably normal, but so far no swelling so I haven’t gone back to the doctor about it. Hopefully it’s nothing related to the medications.
But at least I don’t have the ongoing nervous system involvement and excruciating pain that so many “floxies” suffer. So in a way, I consider myself one of the luckier ones.
** The story above is truthful, accurate and told to the best of the ability of the writer. It is not intended as medical advice. No person who submits his or her story, nor the people associated with Floxie Hope, diagnoses or treats any illness. The story above should not be substituted for professionally provided medical advice. Please consult your doctor before trying anything that has been mentioned in this story, or in any other story on this site. Please also note that people have varying responses to the treatments mentioned in each story. What helps one person may not help, and may even hurt, another person. It is important that you understand that supplements, IVs, essential oils, and all other treatments, effect people differently depending on the millions of variables that make each of us unique. Please use appropriate caution and prudence, and get professional medical advice.
I am so sorry…My Pulmanory doctor denies that Lavequin has don damage to my tendons around my heels…I was given Levaquin back in June when I went in for a COPD Flare-up..I had told my doctors on Cipro but I did not know about the other ones out there…I do not and will never take them again….
Oh my God, I been fighting my body for years .. I first took cypro.. in 1996 for a prostate infection. I have taken it many times. My strength I had left. Pain in my legs. Back of my legs neck. Unable to think straight. So may symptoms. I wanted to kill myself. I am still fighting this. I been educating myself. I had diverticulitis. It’s like they knew what they were doing to get us all ill. To make money on us..
Gosh your story isn’t too far from mind. I had sinus surgery and before and after he had me on Ciproflaxin, and about a week or 2 after sinus surgery I ruptured my left Achilles Heel. Went to walk in ortho clinic and he saw the lump and a bone growth that is characteristic with a torn Achilles heel tendon. Waiting on MRI now… oh Joy, another surgery…. I’m not amused….
Cindy, should you experience more connective tissue damage in the future (tendon, meniscus, etc) please look into prolozone injections (not to be confused with prolotherapy) The injections contain ozone and allow your body to heal naturally. IT takes a few months, but so worth it. I had both knees done by an ND but many sports med doctors now do this.
Also look into amniotic stem cell injections. I just did 12 rounds of cold laser therapy for my left Achilles tendon, which helped tremendously. May do the stem cell at some point. I took 8 pills of cipro for gastrointestinal infection in 2013. Started playing tennis 2 years ago and got Achilles tendonitis. Prolozone was not available or I would have done it.
I have had lots Cipro and Levaquin for several years but a lot this year because of infections, finally had surgery in July and after the surgery I have had pain from my waist to my shoulders on left side and across my middle back, no doctor seems to know why. Then a couple months ago my finger nails have started having unusual ridges and breaking. I have always had very strong hard nails before. I believe the floxins have caused all these problems, but now what am I to do. Also broke my foot just by standing up, only break I have ever had, thus again after all this medicine this year.
Carolyn, perhaps a ligament or tendon tore in your foot. This would cause foot deformities and possible fractures. It happened to me years back. 2006. My left foot has flattened and there is a big space between the 2nd and third toes. Around the same time finger tendons snapped. This happened approx 6 years after Cipro, two rounds for diverticulitis which they found out later I did not have. I have some strange bird like foot now. In addition my left ankle totally blew out in 2014, two years after Levaquin use for one week for an infection that they later found I did not have. The peroneus brevis, longus and soleus also tore. It was a hot mess for a few years. No one in medical believed any of it was due to these ABOs. I went back thru my med history with my pharmacy to figure this out. Was awestruck that not once was I given a warning from anyone. Criminal.
Dearest Melanie, I am Dan Jervis, the last one on the long list. Would you please consider sharing your story to CBS 60 Minutes? 60m@cbs.news.com
WE NEED OUR STORIES TO BE HEARD, Dan
My husband first had to have Achilles tendon surgery a few years ago, then there was a rupture in his shoulder which we fixed last year, now there is rupture in his other shoulder which will require surgery and in his right thumb. This drug is horrible. Our docs is saying they feel it is the cipro he took years ago.
Hi L, I am Denise. my knee cartilage has damaged and made oedema because quinolone took all tissue fluid on my knees. I have been floxed 2018 January, all my symtoms passed away but my knees are still bad. I decided to go to orthopaedist and took MRI. we see the damage on my cartilage. now we will start the PRP a kind of stem cell operation next week. Do you have any advice for it. Note ( I have no pain )
What can be done to rid the body of these drugs to hopefully eliminate all this trauma in our bodies? Anything? Is there a way to stop the ongoing damage? My left ankle tendon is ‘shredded’ and I am determined to avoid surgery. I couldn’t manage the recovery, for one thing.
I didn’t have any symptoms while I took it either. I started what I thought was hamstring pulls but were more likely tendon tears in my butt,hamstring,and tendinitis is my elbow and knee. Funny all on my left side. Like you my left thumb has been sore since Oct. And the doc’s think were making all this up
Thank you for sharing your story. I was on Cipro MANY times since being diagnosed with diverticulotis in 2011. I now realize that most of those episodes- at least once a yr- were probably NOT diverticulitis, but instead GI issues from floxing. I have since 2011 been diagnosed with anxiety, depression, fibromyalgia, and chronic fatigue symdrome.
The last dose i took in Dec 2018 was my threshold, and the horrifying panic that caused to me research, and realize I am floxxed.
By some miracle, I was already taking magnesium daily, and had just begun Iodine supplements (can not remember why) before i took the Cipro, I think that was divine intervention. I suffered from alot of crazy pain in abdomen, hips, legs, shoulders for several months, and lost 20 lbs, lost muscle mass.
I began meditation, lots of self care, and followed the protocol of The Fluoroquinilone Toxicity Solution and revommended diet.
Things have been much better for the last several months- except for GI issues. I now have a gluten intolerance as well as sensitivities to sugar, caffeine, additives, and i cant seem to eat meat anymore, although it may not be the meat itself (i try to buy organic) it may be something added to it.
For the last few days, i have had a slight discomfort/tenderness in my L ankle. No swelling. I must say, I am concerned. Especially right now when it is hard to see a doctor.
It really is tough waking up every day wondering if I can eat today, will anxiety play a role today, and now if its okay to walk my dog…
Thank you for allowing me to share…
If you still read these i could really use your input. Those unusual tears you refer to..did they call them infrasubstance tears?
Did they tell you of any nonsurgical options?
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