*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.
Lisa’s Story
In the middle of November, 2011, I took Cipro to treat a urinary tract infection. I took 2 pills (500 mg each, I believe) a day for three days. I didn’t feel like the infection was gone, so I went back to the doctor and requested more antibiotics. He gave me macrobid and the infection subsided within a couple of days. Life went on as normal for the next couple of weeks, until December 2, 2011, at which time I got my period and started taking ibuprofen to help me to deal with the cramps.
Before I continue with my story, I would like to note that I had taken Cipro to treat a urinary tract infection approximately a year earlier. I had no notable side effects at that time. Though, looking back on things, I did develop an eyelid twitch at that time and some strange stomach cramping that came and went started then. I didn’t think anything of the eyelid twitching or the stomach cramps. I certainly didn’t think that they were tied to the Cipro. I took ibuprofen regularly after taking Cipro with no adverse effects.
On December 2, 2011 my legs started to itch. On December 4th I broke out in hives all over my body. I went to the doctor and was told to take Benadryl. I took more Benadryl than the box recommends and my hives got progressively worse. On December 5th my feet and hands swelled to the point that I couldn’t use them anymore. It was painful to walk, or even to just stand. I went back to the doctor and was put on prednisone. The prednisone suppressed the swelling and calmed the hives a bit. On December 7th my left leg went weak. For the next few weeks the following symptoms got worse and worse:
- Weakness in my legs. I could barely walk. The steps that I could take took a tremendous amount of effort and energy. I couldn’t stand for more than a minute. I had to drag a chair into the kitchen in order to cook rice because I couldn’t stand to stir the pot.
- Tightness of the tendons in my legs. I had inflammation, and possibly tears, in most of the tendons in my legs and feet. My hips, knees and ankles, to simplify things, didn’t work right.
- Loss of use of muscles / loss of strength. My muscles, especially the muscles in my legs, wouldn’t move like they used to. All of my movements were slow and deliberate.
- Brain fog. I couldn’t think straight. I felt stupid. I couldn’t concentrate. It was a struggle to do my job.
- Loss of memory. My short-term memory decreased significantly.
- Loss of peripheral vision. Large, black floaters entered my peripheral vision.
- Loss of appetite and weight.
- Loss of flexibility. I went from being able to do yoga several times a week to being unable to sit with my legs curled up under me.
- Loss of balance.
- Severe loss of energy. I felt like the plug had been pulled from my energy source. I wasn’t necessarily sleepy, I was just drained. The feeling was similar to the feeling that I have when I have a cold – weak and like I just want to collapse. Just slight exertion would drain me of my energy. Walking would make me tired for a whole day afterward.
- Dry mouth.
- Anxiety. I had an ongoing anxiety attack for the first couple of months after being floxed.
- Pain in my feet. I felt like I was walking on hot coals with every step I took.
- Loss of reading comprehension. I would read a page and have no idea what I had just read.
- Loss of social skills / connectedness. I felt anxious and scared in social situations. I lost confidence in both my physical and mental abilities. I felt very alone despite having a wonderfully supportive family.
I felt as if I had aged 20 years in just a week or two. I couldn’t move, think or eat. My body and mind were falling apart and I had no idea why. I didn’t think that the sudden decline in my health had anything to do with the Cipro. After all, I had stopped taking it a couple of weeks before my body started to fall apart. I thought that I had an autoimmune disease. My symptoms seemed similar to those of rheumatoid arthritis. I went back to the doctor and they ran every test imaginable on me. I was relieved to find out that I didn’t have an autoimmune disease, but it was somewhat frustrating to hear that all of the tests were showing that I was normal and healthy when, clearly, I was neither normal nor healthy. The doctors did not provide me with a diagnosis or a prognosis. Though I was desperately seeking a diagnosis and prognosis, I am thankful, in retrospect, that they didn’t misdiagnose me. If I had been mistakenly diagnosed as having an autoimmune disease, I may have treated it with pharmaceuticals that could have made me feel even worse.
I was desperate for some treatment, something to stop the downward spiral that my body, mind and spirit were in. The traditional medical doctors I saw provided no relief, treatment or healing. I started seeing an acupuncturist. He was able to stabilize my condition, calm my nerves and keep me from spiraling physically or mentally. After a few weeks feeling stable physically, I started to have days where I felt better than I had the day before. Mentally, I kept going downhill for a while, but, eventually my mental health stabilized and started to improve as well.
Eventually, with the help of my acupuncturist, I connected my symptoms to Cipro. Once the connection was made, I realized that all of my symptoms were consistent with those of others who have been poisoned by Cipro and other fluoroquinolone antibiotics. I entered the scary world of being a floxie.
For about a year, I considered myself to be sick. Though the symptoms listed above were improving, slowly but steadily, I was still sick, and a long ways from the healthy, active, energetic woman that I was before I took Cipro. After a year, I started to put “sick” in the past tense. Though I wasn’t back to the level of health that I was prior to being floxed, I was getting better and, as far as most people could tell, I was well.
Following is a list of things that I did to help me to get well, to heal. I am not a doctor. This is a description of my experience and what helped me. I hope that what helped me helps you. Everyone is different though. What helped me may not help you. One thing that I know helped me and that I know will help you is hope. I hope that the fact that I have largely recovered helps you to have hope. I hope that the other steps that I took to get well also help you to gain hope and healing.
Please feel free to contact me with any questions, comments or concerns, or to share your story.
Lisa’s Healing Tips
One of the many frustrating things about fluoroquinolne toxicity is that everyone’s body is different. Everyone’s symptoms are different and everyone’s body reacts differently to treatments. Following is a list of things that helped me. I hope that what helped me will help you, but it may not. I am including other people’s healing tips as well, in case their tips can help. Of course, please read these tips with the typical disclaimer in mind – I am not a doctor or medical professional of any kind. I am sharing my experience with the hope that others may find it to be useful. Please ask your doctor, or other trusted medical professional, for medical advice, and before taking any of my advice.
In no particular order, here are the things that helped me to heal.
- Time. With time, I have healed. Each day is better than the day before. Time will heal your wounds too. Eventually, you will get better. The poisonous reaction affecting every part of your body will eventually stop and you will begin to recover. I have heard several stories of fellow floxies having a timeline similar to mine – slow, steady recovery for about 2 years. Other people take more, or less, time to recover. Time does help though, and most people do end up getting better as time goes on. Very few people get worse and worse indefinitely. There may be bumps in the road, but time is your friend. Time will help you to return to a state of health.
Try to be patient with yourself. It will take time for your body and mind to heal. I see this whole ordeal of getting sick as a lesson in patience (and compassion, gratitude and health). Pushing yourself too hard too soon can lead to pain, frustration and injury. Try to give yourself the time necessary to heal, and, with time, your body and mind will, indeed, heal.
- Avoid NSAIDs and steroids like the plague. Both NSAIDs and steroids are contraindicated with fluoroquinolone toxicity. They will make your reactions and symptoms worse. There are some published medical articles on PubMed about the contraindication between NSAIDs/steroids and fluoroquinolones. Searching at the library or on Google will give you more detailed information than I can provide. Anecdotally, I know that my reaction was triggered by taking NSAIDs (ibuprofen that I took to help me to deal with menstrual cramps) and it was exacerbated by taking prednisone (a steroid). Please note that I did NOT take NSAIDs or steroids at the same time as Cipro. I took ibuprofen 2 weeks after I finished taking Cipro and it triggered my toxic reaction and I took prednisone 3 weeks after I had finished taking Cipro, after my reaction had started. I will never take another NSAID or steroid again.
Unfortunately, NSAIDs and steroids are the drugs that are the most commonly prescribed drugs used to “treat” fluoroquinolone toxicity. This is because the combination of NSAIDs/steroids and fluoroquinolones does not always cause a toxic reaction, the toxic reaction of combining fluoroquinolones and NSAIDs/steroids can occur even when the drugs are taken weeks or months apart, doctors and other medical professionals don’t acknowledge fluoroquinolone toxicity and so they don’t look for the contraindications and because many of the symptoms of fluoroquinolone toxicity are treated with NSAIDs and steroids. The pain killing qualities of NSAIDs and the swelling reduction qualities of steroids make them the drugs of choice for treating many of the symptoms of fluoroquinolone toxicity. Don’t take them though! In my nonmedical opinion, I suggest taking non-NSAID over-the-counter pain medicine like acetaminophen (Tylenol) for pain (or marijuana – which is probably better for your liver), and antihistamines for the swelling.
Often, fluoroquinolne toxicity is misdiagnosed as an autoimmune disease. In particular, it is often misdiagnosed as rheumatoid arthritis. Many of the drugs that are used to treat rheumatoid arthritis are NSAIDs. Don’t take them.
- Acupuncture. I credit my acupuncturist with saving my life. I can only guess how I would have fared without my acupuncturist, but I imagine that I would have ended up in the emergency room, pumped full of steroids and antidepressants, having a massive anxiety attack and unable to walk. That didn’t happen though and there really isn’t any point in surmising about what could have been. I do know that acupuncture stopped my downward spiral and got me on the road to recovery. Both the acupuncture needles and the herbs that he provided gave me immense relief. I don’t know why or how acupuncture works, but I do know that it worked wonders for me.
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Supplements. I have taken more supplements than I can remember. 90% of them had no noticeable effect on my health. Here is a list of supplements that I think helped me.
Iron. I take a low dose iron supplement – only 5 mg. – daily. The brand of iron supplement that I use is Pur Absorb, but I’m guessing that other low-dose iron supplements will work equally well. Within just a couple days of starting taking the iron supplement, my energy levels increased dramatically. I could walk a mile without being exhausted afterward. In addition to improving my energy level, the iron supplement seems to make my muscles and tendons more supple and malleable. When my tendons are feeling tight, a dose of iron helps to loosen them up – within just a couple hours. Too much iron is really bad for you, so please be careful with supplementing it (ask your doctor, yada yada), but it helps me immensely.
Magnesium. I take 250 mg of chelated magnesium daily. I don’t necessarily notice that it makes me feel better, but I do notice that I feel worse when I don’t take it. My muscles twitch if I don’t take my mag.
Zinc. I take zinc when I get around to it. I remember feeling mildly better when I started taking it. It doesn’t seem to affect my health dramatically though.
Chlorophyll. I take chlorophyll about every other day. It seems to help with my energy level and mental functioning.
I also take fish oils, resveratrol, a probiotic, a joint supplement, CoEnzyme Q10, vitamin B12, chlorella, glucosamine, brewer’s yeast and some other supplements. They may help. I can’t say that I feel a difference using any of them.
- Meditate. Meditating has so many amazing, positive benefits for your brain, your life, your spirit, etc. that I can go on about it ad nauseam. Meditation helped relieve a lot of the mental symptoms of my fluoroquinolone toxicity. My anxiety, inability to concentrate, inability to connect with others, depression, loss of reading comprehension, decreased mental acuity, etc. were greatly reduced (or improved) through meditating. I meditate about 10 minutes each day. I should meditate more like 20-30 minutes a day.
Meditating helped me to gain compassion for myself and my situation. It also helped me to let go of the anger that I felt toward the pharmaceutical companies and the medical culture that allows fluoroquinolones to be on the market. The pharmaceutical companies and the medical culture are both messed up and blame of them is justified, but anger and blame were not serving me mentally, emotionally, spiritually or physically. I needed to let go of my anger and blame in order to move on with my life. Meditating helped with that.
I learned to meditate through taking a class called Mindfulness Based Stress Reduction that was offered by my health insurer. It was an excellent class based on the work of Jon Kabat-Zinn. Many Buddhism centers offer Mindfulness Based Stress Reduction or Meditation 101 classes.
- Get off the internet. Most of the information available on the internet about fluoroquinolone toxicity is horrifying. Fluoroquinolone toxicity is horrifying. It is scary. It is completely unacknowledged by the medical community – the doctors, nurses, etc. who we go to in order to make sense of things when our body goes hay-wire – so we seek answers on the internet. Unfortunately, most internet sites devoted to fluoroquinolone toxicity do not provide a balanced picture. They show the harm and the horror of fluoroquinolone poisoning, but they don’t show the healing and hope that most people eventually experience. I am writing and distributing this in order to provide the perspective of hope and healing. Some people are permanently disabled from fluoroquinolones. My heart goes out to those people and they have every right to scream their story on the internet. However, their story is not your story. My story is not your story either. But if you’re going to look to the internet for a prognosis, it’s better to find a hopeful prognosis than one that is full of doom and gloom.
When I participated in the online forums for Floxies, I noticed that my anxiety levels increased significantly. Even after I was 90% recovered and I thought I could handle it, my anxiety levels would go up simply by reading about people being floxed. Inducing anxiety is one of the worst things that someone suffering from fluoroquinolone toxicity should do. Anxiety makes all symptoms worse. I would slowly relapse and my symptoms would get worse every time I participated in the online forums.
Of course, the people participating in the online forums are seeking to help fellow Floxies, to commiserate and to participate in a support group. It is not their fault that my anxiety levels increased when viewing their sites and/or support groups. After all, most people on those sites are trying to be helpful and supportive. However, the net result of participating in the forums for Floxies is that my anxiety levels increased and my health declined while I was on those sites. I am healthier and happier not participating in the online “support groups” than I was while I did participate in those groups. Of course, this is my experience only. Many people find solace in the Floxie community and if it helps you, great!
The people who have worked hard to create a community of Floxies to support one another should be commended. It is because of their hard work that thousands of people have realized what is going on with their bodies and that they are not alone. The community of Floxies is full of wonderful people. However, you need to do what you need to do to take care of your health and if you find that hearing other people’s stories increases your anxiety levels, get off the internet. For you.
- Diet. I lost 11 pounds in 18 days when I first got floxed. My body was going hay-wire and it seemed like an allergic reaction. I had no idea what I could possibly be allergic to so I stopped eating almost everything. I didn’t eat sugar (including fruit), gluten, dairy, soy, anything non-kosher or anything spicy, or drink any alcohol or caffeine, for a month. I only ate vegetables and organic meat. It’s a highly effective way to lose weight, but I don’t think that restricting my diet severely helped me to heal. Restricting my diet gave me a sense of control, and that’s not a bad thing when your body is self-destructing, but I don’t think that it made me feel any better physically. After a month of only eating veggies and organic meat, I started to add normal foods into my diet. As soon as I started eating an appropriate number of calories, I started to feel better. Not only was I Floxed, I was also wasting away when I wasn’t eating normally. Getting enough food is an important part of healing. Of course, it’s generally good to be on the “don’t eat junk” diet, but I didn’t find that cutting my food intake significantly helped me to feel better.
Many Floxies develop GI problems. I was lucky in that I didn’t have many GI problems. Many people seem to be helped by cutting gluten, sugar and/or junk food out of their diet.
I notice that I feel slightly worse than normal when I consume sugar and/or caffeine. I think that most people do, I am just now accustomed to paying closer attention to my body.
The only food that makes me feel noticeably better is beets. For some reason, beets make me feel great. I just boil them and eat them.
I’ve heard good things about the benefits for Floxies of eating broccoli and other cruciferous vegetables. I love broccoli so I try to eat a lot of it. Unfortunately, I can’t say that I’ve noticed that it makes me feel better.
- Swim. My tendons and muscles feel significantly better when I’m in the water, and for several hours after I finish swimming. Swimming in the ocean feels especially therapeutic. There are so many minerals and trace nutrients in the ocean, I surmise that they’re helpful for healing. Unfortunately, I don’t live near the sea, so I swim in a pool. I feel better when I do so.
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Pilates. I started doing Pilates about 7 months post-floxing. Pilates strengthens the core, something that is generally important, and gently stretches muscles, tendons and ligaments, something that is particularly important for Floxies. I started slowly and gently and didn’t push my tendons, muscles or ligaments too much. I feel that gently stretching helped my tendons, muscles and ligaments to heal and return to (close to) their pre-floxing capacity. Take it easy though.
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Healing arts. I love to dance. I’m not a good dancer, but I love to do it. About 16 months post-floxing I started to dance again. Dance has been healing for me. I feel spiritual, strong and joyful when I dance. I’m not sure if it’s the dancing itself that I find to be healing, of if it’s the joy that I feel when I dance that is healing. Either way, it helps. I surmise that other forms of expression would have similar healing qualities. If you love to sing, sing. If you love to paint, paint. If you love to write, write.
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Attitude tips.
Try not to compare yourself to how you used to be. I used to hike 20 miles in a day. I can’t do that anymore, but I can hike 3 miles today and I couldn’t do that when I first got floxed. Compare yourself to how you were yesterday, not to how you were before you got floxed.
Do something – anything – to work toward healing, every day. Walk a little further than you did yesterday. Meditate. Take an Epsom Salt bath. Get an acupuncture treatment. Do a puzzle. Whatever makes you feel good – do it. Every little step helps.
Don’t kill yourself. Have hope. You will get better.
You’re not crazy. You’re sick. Have hope. You will get better.
You’re not stupid. You’re sick. Have hope. You will get better.
Try not to identify yourself as sick. The mind is a powerful thing so try to stay positive. It’s hard, I know. But try, because it’s worth it.
You will have bad days. They will pass. This all will pass. It is not permanent. You are strong – present tense. You were knocked down, but you weren’t killed. You will get better.
Don’t quit your job. Try to maintain as much normalcy in your life as you can.
It is not your fault. Even if you knew better, even if you demanded the most powerful drug possible from your doctor, even if you self-medicated, even if you coerced your doctor into giving you the fluoroquinolone antibiotic, even if the infection that you were treating was something that you got because of doing something stupid, or from sex, even if you continued to take it after you started to get sick, even if you floxed your child/parent or other loved one – IT IS NOT YOUR FAULT. You are sick. You are poisoned. You are not to blame for your sickness or for the fact that you are poisoned. Who to blame is a discussion that I don’t want to get into because I want this to be positive, but it is not you. You are not to blame. You are a victim. It is not your fault.
Lisa’s Life now
Life is good. I don’t consider myself to be sick any more. I’m not quite up to my pre-floxing capacity in a couple of areas. I don’t have the endurance, energy, strength or flexibility that I used to. However, I’m pretty close to my pre-floxing capacity in those, and other, areas. I’m about 99% better. Not being capable of intense exercise since December, 2011 has left me a bit out of shape, but I’m working toward being able to exercise intensely again and my stamina, strength, energy, etc. are increasing. I can’t hike 15 miles with a backpack on quite yet (something I could do before I was floxed), but I am capable of most physical and mental activities that would put me in the “normal” or “not sick” categories.
I can work full-time. I am grateful for the fact that I have a job that is not too demanding physically or mentally because I was able to hold onto it through my worst times. My boss and coworkers were wonderfully understanding and they claim not to have noticed that I couldn’t think straight for about a year. I even got a promotion about a year post-floxing!
I can do Pilates 4 times a week, swim 2 times a week, dance once a week and walk daily.
When I was unable to walk a block I told myself that I would consider myself to be “better” when I could dance all night in heels (my feet hurt like hell when I was sick), I can do that now. I never liked high heels, but I can wear them now.
My memory isn’t quite what it used to be, but it’s good enough to do well at my job and to maintain my relationships.
In many ways, I’m a different person than I was before I got floxed. This has been perplexing for me and my loved ones, but it’s not an altogether negative thing. I’m a much more spiritual person than I was before I got sick. I was a pretty firm Atheist before I was floxed. Now, through meditation, dancing, believing in alternative therapies that focus on energy, etc., I’m finding some spiritual outlets that I didn’t have, need or want in the past.
I have become a more compassionate and patient person. I now empathize with people who have mystery diseases. I used to have the attitude that I now find so frustrating in medical professionals – that if there isn’t a way to diagnose or treat an ailment, it doesn’t exist. Now I know that people are genuinely suffering and that there is a real cause for their pain – regardless of whether or not it is acknowledged by the medical community. My heart goes out to those in pain.
I had to become more compassionate and patient with myself as well.
I like some things that I didn’t like before I was floxed and I don’t like some things that I used to like a lot. I hated swimming for the first 32 years of my life. Now I love it and consider it to be an important aspect of my healing. I used to like working out in an intense way that got me dripping with sweat. Now I like to do exercises like Pilates that are focused, slow and deliberate. I used to love hiking, camping and backpacking. I miss loving those things so I’m going to try to get back into them, but I’m not sure that they’re my passions any more. Drinking used to be one of my favorite pastimes. My tolerance for alcohol is shot now and I don’t really enjoy it any more. I missed it for a while even though I knew that it was for the best that I wasn’t drinking like a fish. My appetite has changed as well. I used to be able to eat a lot of food and I loved to eat. I still eat, of course, but I don’t eat as much as I used to and I don’t eat with as much gusto. This is probably a good thing seeing as I’m not into exercising intensely any longer.
Even though I would do just about anything to turn back time and not take Cipro, the place that I am in life isn’t bad, and I probably would be someplace different if I hadn’t gotten sick. It sucks that I had to gain empathy for people who suffer from pain, mystery ailments and debilitating fatigue, but it’s probably a good thing that I now have more empathy. I would like to think that I’m a better person from going through this. I’m not a stronger person, but maybe I am a better person.
I hope that my tips and words of advice are welcome and helpful. Please feel free to contact me if you have any questions or concerns.
** 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 have been diagnosed with viral arthritis by a rheumatologist. Although I have a suspicion that it might be the cipro poisoning. I am currently on prednisone to “get rid of the inflammation that’s causing the pain.” There’s really no way to know for sure which it is. I have heard that prednisone could either benefit those that have cipro poisoning or in most cases hurt them more. Because I have no way of knowing for sure if what I have is viral arthritis or cipro poisoning I have decided to continue to take the prednisone to see. Has anyone been diagnosed with viral arthritis or have taken prednisone?
Hi Lisa, I just found out that I have been floxed. I was given Avelox in 2012, 2x in 2013, March 2014 & in nov. After two pills, I could hear all my joints cracking & popping every time I move. Now a week later, I still have the popping sounds on my knees, feet left arm/ elbow, along with pain on my left arm, calves & feet. I think I am a complete MESS. After searching in the Internet, now I can connect the dots, that I have been getting the toxic symptoms, but not recognizing these. Over the last two years: I had tingling & numbness in my hands (last 3 fingers) worst at night – negative for nerve conduction tests, tendinitis right shoulder (got steroid injection for this), upper back pain – especially at the end of the day, mystery bruises, anxiety/ panic attacks, feeling that something is crawling on my head at night occasionally, tingling on my left foot, right eyelid drooping ( I thought this was b/c of aging). Of course my doctor said This is all psychosomatic from my generalized anxiety divider, that I was making my joints make the popping sounds! What do you think about the magnesium & multivitamins – what kind of multi did you take ? Epsom bath seems to help for me. I also have my thyroid so out B/c of cancer, so I am on hormone thyroid hormone suppression therapy – I am afraid to take a lot of supplements in case they cause problem ! I cannot get advice from a doctor either, b/ c he does not believe I have the toxicity. Did the glucosamine help? I am very scared that I might still get the other symptoms. I just had a grandson last April & was so excited to babysit him next April 2915 – it seemed like I am not able to do this now. Have other people recovered in less than a year or has it mostly been years before recovery ? Of course my anxiety does not help – I saw a psychiatrist last month who wants me to take Paxil – should I still take it ? Thanks, miriam
Thank you for having the courage to tell your story.I too took cirpro.It seems like the beginning of the end. But I work with a complimentary medicine.I have been with them for 14yearsso they knew me before.I have chronic fatigue,so it’s a recurring situation. This will probely get better.I have before ,I wish someone would get the medical profession to be more mindful when they treat us .It supposed to be a healing field not a death field I promise myself to never accept anything without checking it out first ,no matter how sick i am.Thank you for sharing this with me.I don’t feel so alone anymore.I hope you continue to improve and thrive.
Thank you !! I’m still new to this poison, only one month and I’m suffering like hell, I’m dipressed and somedays are very bad, I get all the bad ideas that there’s something more serious with me and that I will never heal again… Thanm you, your post gave me hope
Hello all, I was searching for side effects of CIPRO and came across Lisa’s story. First of all, please forgive me for such a long post. I have been on CIPRO since January 2013. Long story short, I had both my knees replaced in 2007, and in October 2012 was admitted to the hospital with an inflamed left knee which had gotten infected with E-Coli. Had to have the left knee cleaned out, plastic parts of knee replacement that were infected with E-Coli were replaced, and then almost went into renal failure due to the combination of antibiotics they had me on. Two months in a skilled nursing facility and was shipped home with the orders to take two 750mg. CIPRO each day for the rest of my life. All was well until May of 2014. I had a persistent sore throat, feels like razor blade when I cough. I went to my doctor the end of May for some relief – he tried two different antibiotics but they did nothing to relieve the throat. October 2014 – finally got referred to an Ear/Nose/Throat doctor who diagnosed me with a strain of Thrush. ENT told me since I was on CIPRO I would get this type of infection more easily – he then prescribed an antibiotic that actually helped, but after taking for seven days the sore throat came back, asked for additional meds and he then gave me a mouth lozenge, just shaking my head. During the entire year of 2014 I have been experiencing muscle weakness, feelings of hopelessness – although I do have a good support system of family/friends – extreme exhaustion, lack of energy, numbness in my feet and hands. I honestly thought I was going crazy or getting ready to die, finding myself planning my outings around doctor appointments. Lisa something you said about having to bring a chair into the kitchen so you could cook the rice since you were unable to stand for more than a minute – I started to cry! I have been experiencing this very same thing for the past three/four months! THANK YOU for writing this article, I am now going to make an appointment with my primary care doctor and he WILL NOT blow me off about this any longer. I am beginning to wonder why I let this man just ignore my issues for this long.
You probably won’t get anywhere with your primary care doctor. I was floxed 18 months ago, still recovering, and my doctor blew me off. They are just too brainwashed. Try to find a good functional medicine doctor or naturopath. Listen to Lisa’s podcast with Ruth. She has some good suggestions on supplements. If you have peripheral neuopathy you may want to check with Barron & Budd about joining the lawsuit, that is if you did not take a generic. Good luck.
Thanks to everyone who has encouraged positive thinking and faith. I recently took cipro over two days for suspected diverticulitis. As soon as I felt tightness and sharp pains in my tendons, I discontinued. Doctor and pharmacist say its temporary, of course your experiences suggest its serious.
I am an athletic 35 year old male with a history of depression, so I’m super worried that I’ll never run or hike again. I believe my symptoms are mild, as I am mobile, but my knees and legs feel sore, occasionally cramp and I get weird twinges in wrists and arms. Hoping and praying that I stopped soon enough and things don’t get worse.
But…trying to be healthy, start the healing and keep track of symptoms each day to see improvement. Taking probiotics, mg, omega complex, vitamin d, and milk thistle. Cutting out junk from my diet. I am walking 3 miles a day, because my joints and muscles seem to cramp less when I’m active. Cipro and then amoxicillin did not resolve my diverticulitis pain, and now I have the fear of being floxed for life. But as Lisa says, the internet is full of individual stories, often very severe. If I manage to recover over the weeks and months, I promise to post to as many forums as possible to give some glimmer of hope.
God bless you all.
I have gut issues also (celiac) before I got floxed. I hope you can find a functional medicine doctor who can intelligently deal with your gut issue. Antibiotics only make that worse. My symptoms are much worse than yours but I am still hoping for full recovery. Don’t push yourself too hard right away. Floxies tend to relapse if they push themselves too hard. There is a colloidal silver product called Invive that is good for infections as it is far more concentrated than the usual products. You only take one drop at a time. I believe you will recover fine.
Geopainter, I agree with Bob. Don’t push yourself too hard at first I was 34 when I was first floxed and gradually worked myself back up to where I was walking briskly 5 miles per day. I was also lifting weights for upper body/arm strength. When I tried to run, it was too much, so now I’m gradually working my way back to exercising again. Although it is scary, you can learn a lot about yourself if you are open to this experience. Know that each individual is different, and please don’t scare yourself with reading all the stories!
A healthy diet has really helped me, not just because of Levaquin toxicity, but because we should all be eating healthy foods that nourish us. Good for you for having an outlook of optimism! It will really help you!
Wow. Your words are very encouraging and positive. I’m a born pessimist, and really feel better about what’s going on with me after reading this.
I’m not 100% certain that my problems are caused by being Floxed or not yet, but it’s looking that way.
Just this past New Years day, I woke up with what I thought was the flu. Day three, I went to urgent are and was prescribed Levaquin for pneumonia. Day three of levaquin, my problems started. I’ve lost my appetite, lost 16 pounds in four weeks, GI issues, popping joints, sore/achy wrists, ankles, knees, shoulders, etc. I have trouble concentrating, I’m depressed, anxious, and extremely fatigued. I have trouble playing with my 10 and 6 year old daughters and my wife is worried because I’m not myself lately.
I’m scared about what’s going on, and my doctor just sent me for blood tests and ultrasounds yesterday – the first step in diagnosing me. I follow up with him on Wednesday of this week (four days from now.
I wonder if this is all related to Levaquin?!
It very mu h sounds like you have been floxed.The pproblem is that many many trsts show negative for anything and thAts where the trouble begins
Also join the fluoroquinolone toxicity group on Facebook.
You’ve been floxed alright. Your symptoms may seem terrible to you, and they are, but many people have had worse, including me, and are functioning or completely recovered. I would urge you to get rid of the fear you won’t recover. That is the worst thing. Then you create out of fear. You need to create out of hope instead. When I took cipro the doctor hooked me with “you’ll feel better in 3 days.” I had a much more severe reaction than you on a smaller dose. The sooner you stop listening to doctors tied in to the Pharmaceutical/FDA cabal the better off you will be. Find a good functional medicine doctor who can think outside the box. You don’t need more drugs you need detoxed plus nutrition like magnesium, mtio Q, ppq for your mitochondria. You may need a glandular supplement for your thyroid. Conventional doctors have very poor training in helping someone like you. You have a lot of oxidative stress that needs to be dealt with. They have no training in that. Get the right treatment and you’ll recover.
Jess, I love your attitude! I wish you relief from pain and the ability to enjoy your moments despite this setback. I am a “survivor” and have learned a lot after taking Levaquin. It doesn’t have to be all bad even though no one would wish this on themselves or another human being.
What Dr from PA is familiar with this? I’m from PA and my personal physician doesn’t want to acknowledge this (as many others I suspect). I’m having some GI issues that are lingering after my other symptoms are doing well….
Thank you for the encouragement and light at the end. It means south to see someone else’s story so close to my own. It’s taken two years to find out what happened to me. It’s how you do today that matters not how you did before.
Bob, mtio Q, ppq for your mitochondria helped you ? I heard of it from Ruth she wrote a recovery story here on floxie hope. I am thinking to try this too. I was floxed in August 2013 Since I have up’s and downs, right now my biggest issues are muscle pain,fatigue, and depression. I have muscle pain all the time in my calves and back of the knee especially after activity. I am 27 years old now. I am from Germany. I wonder if MitoQ or PPQ will improve my situation. I did try a lot high doses of magnesium too.
Yes maybe I am going to try it,but it is expensive in Germany and I spent so much money on supplements. But I am thinking about it. If I am going to try it I will let you know !
Thank you Lisa
Thank you so much for providing this list, Lisa. I had NO idea there was someone like this in my city. I seem to be on the mend, but I’m keeping her name handy just in case!
I have only been taking Mito Q for several weeks and I just opened my first bottle of pqq today so I can’t give give a good history. I am better then I was a month ago though. That may be due to the mito q. I think its worth a try. I would also stress taking a good mineral supplement.