*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.
Hi lisa,
I am suffering from tingling neuropathy around my ankles. It’s been almost a year since it started and it started when I was on levaquin. Do people who have been floxed have a constant neuropathy or do there’s come and go. Mine is aggravated by standing and vibrations. Just wondering if levaquin damaged my tendons and is pressing on nerves through the tarSal tunnel?
Hello Lisa. It’s hard for me to stay positive after reading all these stories of people who didn’t get better… It’s only a week and I feel like I lost my game of life. What if I will be one of them? 🙁 Now it’s pain in legs and hands and itchy and burning skin. I hope that will be all of symptoms. Please pray for me, I don’t know how much can I stand.
I am wondering if anyone can tell me if procedures (such as endoscopy/colonoscopy) have caused a recurrence in symptoms after being floxed? Does the medication used, or the “trauma” of the procedure cause a relapse in cipro poisoning symptoms?
Nancy, I had an endoscopy while floxing and I did feel I felt worse afterwards. It took me a month to go back to where I was before the procedure. I think it was the anesthesia and when I had my gallbladder taken out, they used some NASIDS and I really had problems after that! Am seeing double since then which was seven months ago. I am not sure if taking the Cipro was the cause of the double vision or all the drugs and morphine caused the problem. Anyway, you will work through it. It will take about a month I would say. Just try to get through each day, that is what my therapist tells me. Kris T
Thanks for sharing your story Lisa. August 2014 I went to the doctor with a kidney infection and was prescribed Ciproflaxin. I took only three pills and was in the ER with a swollen tongue, hives, back pain (left flank) and left hip, left leg pain (sciatica?). By Christmas I could barely walk…showing signs of autoimmune condition (but seemed out of the blue). I have IBS/ and Celiac and also Menopause…so I just thought it was getting worse, but couldn’t shake the idea that I had somehow been poisoned by the Ciproflaxin, although I couldn’t prove it and that seemed ridiculous as an explanation? I was getting anxiety attacks, skipped my period for two months, got one more and have not had another since. Also hot flashes, night sweats, even when I napped, racing heart beat, chest pain, would black out in the bathroom, had vision problems, balance problems, nausea, sleep problems, terrible left shoulder pain, neck and joint pain, strange aches and pains (almost flu like) that couldn’t really be explained, sinus infections, sore throat, dry mouth + thirst, migraine headaches that would last for weeks! I muddled through…walking with a cane, dealing with the pain because any time I took NSAID’s my organs felt like they had been cooked in the microwave. I was retaining water, all over body inflammation and itchy skin and sometimes hives and eyelid swelling which pointed to an allergy but I couldn’t figure out what I was allergic to…I took Benedryl, but I have Restless Leg Syndrome, so my legs move whenever I take NSAID’s, cold meds, allergy meds, Gravol, or Sleeping pills (basically anything that makes you drowsy). So I don’t take them anymore. Now it is March 2016…this past Christmas was better than the last, not using the cane anymore and I am able to walk, but I can’t stand around without back pain. I don’t have the energy that I used to have, walking around for the day at the mall totally exhausts me now and I have to wear “sensible shoes,” no high heels. I felt a lot better for two months in the summer…the sun really helped me, but the stress in my life complicates matters so I try to minimize/cope the best I can.
My ill health forced me to make drastic changes to my diet– no junk food, no fast food (hamburgers/hotdogs/French fries), no deep-fried or spicy foods, no glutens/grains (except I eat GF oats and rice, and a few flours like arrowroot, banana flour, almond and coconut flour), no dairy (except goat milk, goat cheese) and a little bit of plain Greek yogurt once or twice per week, no processed/artificial sugars (I have Local, unpasturized honey, 100% Maple Syrup and Dark Chocolate), I eat fruit and vegetables (except no corn as it cross reacts as gluten, and I limit nightshades, no potatoes), I consume good fats/oils- absolutely no GMO Canola, I have Imported Cold pressed Extra Virgin Olive Oil, Organic Coconut Oil, Grapeseed, Ghee, grass-fed butter, Palm shortening, Sunflower Oil, Avocado, and a little bacon fat. I eat meat…chicken, farm free eggs with orange yolks, Highland beef, turkey, duck, fish (wild caught salmon), seafood, lamb, I don’t really eat pork,, (but sometimes one slice of bacon, peameal or ham), no sausages! Soon I plan to add rabbit, and goat. I eat nuts, nut butters, non-dairy nut milks (no carregeenan) and seeds (sunflower, pumpkin, hemp hearts, chia and flax), plus dried coconut. Beverages- spring water, warm lemon water, coconut water, coconut milk (no gums), herbal teas like peppermint, ginger, dandelion, Labrador tea, lemon chamomile, 100% unsweetened fruit juice, and occasionally tomato juice. I cut out all carbonated sodas, all alcohol and all coffee! I also take fermented probiotics like apple cider vinegar, Bubbies pickles and sauerkraut, trying to find a coconut based kefir. I don’t really do well on legumes, but I can have a very little bit of chickpeas/hummus with GF rice crackers, I also make a killer avocado-lime guacamole for which I add hemp hearts. Lisa…I haven’t noticed that I do well on beets, for me…I get high energy from sautéed kale.
I take a number of supplements- Vitamin D, calcium, magnesium, zinc, B12, St. John’s Wort, digestive enzymes, digestive bitters, probiotics, Super joint support for rebuilding bone and cartilage and to soothe achy joints, Arthritease, Kaprex, and turmeric for pain, Maxi-Boz, peppermint oil, and coconut oil for gut inflammation, MSM & Glucosamine, and finally…nausea relief with ginger and vitamin B6. Thinking about adding iron as I am anemic, but I do eat meat and I do eat greens like spinach, kale, chard, dandelion, beet greens, romaine lettuce, Buttercrunch and red leaf. I take a variety of herbs like parsley, garlic and oregano, spices- cloves, cinnamon, turmeric + black pepper, sea salt.
Slowly, very slowly I am seeing improvements, but I have my bad days and good days, wondering if I will ever feel like myself? I wish I had never taken Ciproflaxin, but happy I didn’t finish the prescription, I shutter to think…maybe I would be dead? Will never take it again, but I did, last month take an antibiotic (and the doctor did know I was allergic to Ciproflaxin, so he prescribed something “gentle.”). I didn’t appear to have any adverse side effects and my kidney infection is gone now. As preventative…I am taking cranberry supplements and 100% unsweetened cranberry juice (the horrible sour kind) and Tart Cherry, dried cranberries, I also force myself to drink more water, but I live in fear that I will have need of antibiotics and they scare me! I worry that I will get another kidney infection and I don’t really know what to take except for natural antibiotics like oil of oregano, neem, berberine, allicin, Manuka Honey 10+ UMF, silver solution, or goldenseal?
I am now settled on my new lifestyle, will never go back to the junk food, will always eat healthy, but would like to be able to cut down on the supplements, I would like to be pain free and get my active life back. I am thinking of adding chiropractic and massage, (I have not tried acupuncture), Epsom bath and Saunas and wonder if I should do some kind of liver detox? I have been trying to stimulate my vagus nerve (Gut-Brain axis) and I have been massaging my Ileocecal valve as well. I am having normal BM’s now, no more diarrhea, so that’s good! I have now been three weeks sugar/gluten/grain free, two months dairy free. Yet still…having the joint pain which feels like it could be Rheumatoid Arthritis. My left hip, sciatica and left shoulder are my very worst problems and these make it so I can’t sleep. I have had Chest Xray’s to check for cancer. Occasionally I have pain in my collar bone as well.
Again, thanks for sharing.
I’ve been doing Ozone IV sessions to deal with cipro side-effects, my doctor complements the treatment with Vitamin B, C, Sodium Bicarbonate, NaC and Nux Vomica (homeopathic). I’m also taking Probiotics and a manipulated formula orally with Vitamin B and Antioxidants. I can say it makes wonders for me, I’ve seen great improvements and I’m almost back to my normality. I really recommend everyone here to study this kind of treatment and look for a good doctor at your area that can make it. Also, for who lives in São Paulo, Brazil, the name of the clinic I’m going is Dhrana, just Google it and you’ll find the details very quickly.
Wish the best for all!
Ricardo.
The three pills that I took were 500mcg and perhaps the reason I reacted so adversely to such a small dosage is because I already had a weakened immune system. Also, 17 years ago when I was diagnosed with Hyperemesis Gravadium during my pregnancy, hospitalized for seven months, vomited 20x per day for nine months, lost 1/3 of my body weight, fed TPN, I had my gallbladder and appendix removed…so antibiotics following surgery and NSAID’s. I was also diagnosed after birth…with IBS and an underactive thyroid. I took thyroid meds for one year before I could go off them and anytime I took NSAID’s I would have very serious side effects. Perhaps I was Floxed in hospital? Years later I had Sulfa poisoning and almost died. And then 2014…taking the Ciproflaxin was a load that my weakened immune system just couldn’t handle? Anyway, two questions- Should I try a liver detox? Second- What should I do if I get another infection and need antibiotics again? Choose natural? The last kidney infection, the doctor gave me something “gentle” for which I did not have any adverse reactions to- Auro-Cefuroxime 500mg, thoughts?
Shelley, I know nothing about liver detox, perhaps others on this webpage can comment on that. As far as other antibiotics, I don’t think you can get rid of the bacteria naturally for a kidney infection. Can you take Macrobid? I can only take two antibiotics. Doxycycline and Ceftan. Ceftan, you have to take with a lot of food. It works pretty quickly on the infection. Doxycycline has been around for years. And works well, but it takes more time to clear up some of the symptoms. I think it will be a trial and error to find the right antibiotic. I ended up with an infectious disease doctor who was very helpful. They have to take your culture first and see what antibiotics work to kill that particular infection. Ruth will be helpful here and perhaps she will switch over to Lisa’s column to help you. Good Luck. I am using a cane also so know what you are going through. I have vision problems though and I need the cane for that. Kris T
Thank-you, will look at Ruth’s story. I probably should get my iron levels checked again as when I was first told that I was anemic (a few years ago now), I too started using a cast iron skillet for cooking. Thank-you for the recommendations and I am sorry that you are having to use a cane.
Macrobid’s only work for UTI, not kidney infections 🙁
Shelley, oh, did not realize that. Macrobid gives me hives, but I could take it for years! I guess I am getting resistant to most antibiotics. You might want to read Phillipe’s story also, he had me on a lot of natural fruit juices from Whole Foods. But my acid reflux really kicked in with these and then I had trouble swallowing. I am using the cane because I have double vision. The vision thing happened when I had my gallbladder taken out seven months ago! I have to wait nine months in total and then I will have to have eye surgery. The only good thing, I see two of Tom Cruise instead of one! Kris
Hi
I am maybe going to sound a little mad I had a chest infection was originally prescribed erythromycin which didn’t do the trick. I was then given ciprofluxacin. After one tablet I felt horrific my heart raced my mouth went completely dry and my blood pressure shot up. I went to a &e and was given a naproxen for pain whilst I was there. Next day I am still feeling awful spaced out heart racing and having rightly or wrongly been in the internet .I am now terrified. Am I always going to suffer now ? I am already a very anxious person and I’m unable to sleep with the worry of how it’s making me feel. Please help !
Hi Melanie, don’t panic. Did you take naproxen? You should avoid all nsaid drugs. My symptoms are improving (also heart race about 100) – now it’s two weeks after last dose of cipronex. To flush out that drug you should drink a lot of water and eat detox food (search in internet). And just wait. That’s all you can do. I hope you will get better quickly!
I had the exact same thing happen to me in 1994. I took Cipro for 2 days and on day 3 I started to lose everything. My hearing, vision, balance, ability to find the right words – everything started to go. Each day another one of my senses would fail. It took 2 years for the whole thing to resolve but I was left with some hearing loss and a few other neurological issues that do not interfere with my life. But at the time, I thought the spiral downward would never end. Frightening.
This story is amazing and my only inspiration when I think about what I have been going through after suffering a severe allergic reaction to penicillin. Are you 100% better now?
Thank you for your story Lisa. It has given me strength. I was on Cipro for 30 days for an inflamed prostate. The frustrating thing is that I probably never had a bacterial infection to begin with. My doctor filled out the prescription and told me to take it easy on my tendons. The downward spiral started with bad stomach issues almost immediately. Within a week i was feeling tingling in my feet. When I went back to my doctor she attributed this to anxiety. 2 days later I was in the Emergency Room at the local hospital, I felt like my insides were pressing up against my rib cage and i was getting tingling in both feet. They did blood tests, ECG tests, everything looked normal. I just thought this is something I had to live with for a while to fix my prostate – so I carried on taking Cipro. At the end of the 30 days I went to the hospital again after a night where it felt like my ribcage was tingling, my stomach was on fire, and the pain was projecting down near my kidneys. They did an ultrasound, blood tests and urine tests- everything looked normal. 1 week after the prescription ran out I started to feel tingling around my face, down my arms and in my feet. Thats where I am now. I am convinced it is the Cipro. Before this I was a fit and health 44 year old man with a 5 year old little girl. Now I can barely muster up the energy to play with my daughter and go to work. My concern is that the symptoms will get worse. You are right, stress does make things worse. Reading all of the horror stories online makes my face and arms feel worse. The worst thing is to use google and obsess – but how can you not when you feel like you have never felt before. Anyhow, just wanted to really thank you for posting your story. I will read it over and over when I feel down.
Even though I am a 65 year old grandmother I connect so much with your thinking Lisa.
My story (at least this time) started different than any I have read so far.
I was in the ER on Feb.7th with lower abdominal pain. Diagnosed through CT scan with diverticulitis. Was given a prescription for Cipro & Fragyl. I questioned the Cipro because had it 8 years ago with the gift of C-Diff. She told me the Fragyl would help prevent that. So here is were my story differs a bit. I toke my 1st Cipro & went to shower before I made my husband dinner & wanted some food to take my Fragyl on. While in the shower I started getting pain around my upper right stomach into my back that became so severe that I collapsed in the floor & could not move. I have had a small heart attack many years ago so my husband called an ambulance because we knew something was really wrong.
The paramedic did not think it was my heart but was taken back to the hospital where I was left in a hallway without even a nurse seeing me for four hours. ( I live near a ski hill & there was a emergency that I guess had me on a back burner) My husband did try to get me some help but was just yelled at. By the time I saw a Dr. he was probably tired & really did not look at the paramedics notes ( who by the way did come check on me durning another run & could not understand why no one had seen me ) so long story short the Dr just assumed the Cipro upset my stomach & gave me a pill of Avelox & more morphine & sent me home. With Avelox you only take 1pill a day & do
not need Fragle. Now this is where my story gets scary, I woke up from my drugged state the next day sometime & noticed my eyes were yellow & urinating was difficult & very dark. Tried to get my husband to understand something bad has happened but he is not good with illness & I was so drugged I could not really gather my thoughts. Became very sick in the afternoon & had bad diarrhea for many hours. By the next morning I was so tired from being sick that a friend got me to our larger acute Hospital. My eyes had cleared a bit so in my brain fog I had forgot about the yellow eyes but after my blood test there I was getting questions about my drinking & how much tynenol I take (which I was a one class of wine drinker & maybe a tylenol every 4 months) My liver enzines where off the charts but I was too nuts to get them to understand they were find in the ER 2 days before. They told me to stay on the Avelox, do not drink or take tylenol & I needed a liver enzine test every few days to make sure it is not the Avelox. It did start coming down so not the Avelox but had to be the 1 Cirpo. So maybe all fluoroquinolones are not the same?!
So sorry to make this so long but needed to give background to today.
I am amost 7 weeks since that 1st day & was out of my mind on the Avelox so had to take taxis to blood tests. My enzines are almost normal but still need a liver ultra sound to check the damage. Have told my husband that something in me has really changed! I am not the same person & thinking has been very difficult but in the last week my brain felt clearer but turned to crying all the time & terrible depression.
I have a lot of body pain anyway so had not noticed anything worse until really this week. My TMJ, teenth, neck,back & hands seemed to be the worse. My legs have hurt for years ( maybe since the round of Cipro 8 years ago but did not connect to that, but did start soon afterwards ) I take care of my 2 year old grandson on Fridays and last week he was stuck in a swing at the park & when I was trying to get him out of it I did something to my right arm.
Was not really bothering me on the weekend much & I was more concerned with the depression I was feeling than any pain. By Monday I moved to pick something up with that arm and just about killed me. Then later noticed the other arm was twitching in the mussle so hit the Google. Oh my god did I get horrified with the Floxie forums & needless to say was scared to death! I did see my Dr yesterday & sure enough tinnitus! He did not say the meds could not cause it but just said the med or hurting my arm with my grandson the outcome is the same & I can not change the fact I took the med & to get off the forums. Told me I can not take anything because of the liver & did give me a prescription cream but not sure about even using that.
As I said I am much older than you with health problems that do require some medication. I do not take much because I am senitive to almost everything, even vitamins. I have had a very high count probotic through all this & am staying on it for a while because has helped the intestines a lot & maybe other things. Taking D3 & B12 & my Dr did mention magnesium & zinc yesterday which I do not take because of it causing diarrhea but will start a low dose.
A week ago before the crying & tinnitus started I would have said maybe I can start turning a corner, now I am scared to death! Like you it is time to leave the forums & live my Floxie life. I do have very dark moments & know with my age & health problems I would not live through some of these horror stories!
I live in Canada & my druggist said yesterday when I told him a 65 year old should not be given these drugs he said they have been told the opposite about tendon problems. ( under 18) In his 8 years as a druggist I am the 1st person he has heard a problem from?! No black box warning here!
Sorry this is so long but I have no one to share my story with. My husband does not even want too understand & I have no family except for my sweet grandson that I will take care of even if it kills me. I can not tell my son about this because he has already pulled away from me because he does not understand the health problems I have already or is afraid of them!
I will meditate, & try what I can to get better. I really appreciate any positive suggestions!
Thank you for listening.
Nicole
Nicole and Shelley i am from Montréal , i am still fithing that cipro reaction now after 8 months , i saw more than 12 doctors no one beleive me .
but they do not know what i have , lost 60 pounds and all the symptoms of cipro reaction but my blood is ok except inflamation
they should trust us not the compagny
My Skype is claudejacquesroyharvard
Hi Claude! I am living in Cambridge, Ontario for now, until July. Moving near Quebec border in Cochrane/Iroquois Falls/Timmins area. My husband and I hope to build a house in about five years…raise a few goats, chickens, rabbits for meat, milk and eggs, grow an organic garden and have two bee hives for honey. This is our dream/goal…and I meditate often on that dream as I go forward to heal. Trying hard not to need antibiotics again; I am prone to the UTI’s, kidney and yeast infections…so it scares me. I have been taking cranberry and D-Mannose and cross my fingers…also drinking more water…I shoot for 4-6 glasses.