*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 had one doctor escort me out of the office when I told him cipro had caused my problems. He didn’t even charge me.
Good for you, James. No tests have ever come back positive for me either, and no doctor is willing to admit Levaquin could have led to my issues either. I have had to heal myself, and it sounds like you will do that too! There may be bad days, but good days will be oh-so-good. I’ve learned a lot about myself and my husband since 2006, and I’m living a much better life post-Levaquin!
Lisa, I tried accupuncture & it helped a little. There are so many symptoms I didn’t really know how to ask the accupuncturist for what I needed. Can you direct me more closely as to what they treated you for…I know if I could give her better direction she would be willing to follow suggestions from your accupuncturist. Also, what supplements did they give you. The girl I see has a multitude of natural treatments. I read that you take iron, mag, coQ10, fish oil (i am going to add iron to my plan) but was wondering if your accupuncturist gave you any supplements during treatment that were beneficial. I do not know about Mito Q and pqq, just read about this blog. Will look into them today.
I am a RN and have to work every day. At this point in life it is all I can do & some days I can barely make it through. I am 1 year post being floxed..my perphrial neuropathy, vertigo, vision, foggy thinking, insomnia, and fatigue seem to be worsening all the time. Really want to get this turned around. Lisa, finding your positive post has given me a renewed hope, thank you.
My doctor said “I can’t find any documented problems from Levaquin except ach tendon”….”I said there is still no documented case, right” Of course he didn’t report it. They are so fearful of lawsuits that they can’t begin to accknowledge these effects.
Jess, I am so sorry for your condition, and mine too. My god is what keeps me going also. I like what you said; “my god” because I believe god to be personal to everyone as well as universal to everyone. This brings up an issue that I think is very important which is how do people heal by faith? Jesua Ben Joseph, better known as Jesus Christ, said “your faith has made you whole,” but faith in what? Many people pray for healing and are not healed. I have done a lot of research into frequency and believe that the faith is not that some external god will heal you if you beg long enough but that the faith is in a personal god that responds to your “knowingness”, your faith in your own healing directed by the innate intelligence of your body and its grand design. My wife was sick and bedridden for many years and was finally healed when she decided to no longer believe in her illness. She just simply decided to stop giving it any energy, after 20 years of suffering. It has been said that the hardest work in the world is to believe something that is contrary to appearances, to have faith in your own vision of your health and not what your body is currently telling you. Believe me when I tell you I know how hard that is, I have to struggle with it every day. Luckily my wife keeps reminding me to hold the image of myself as healed in my mind until it manifests. The thought creates the attitude that creates the frequency that creates the reality. That is how it works for the creation of everything. I will hold the thought of your recovery in my mind as a done deal. You are healed and your body is strong and healthy. Hold that thought every day as your reality. Your faith will make you whole, your faith in your own vision of yourself as strong and healthy. Even if I am wrong, which I am not, that will make you feel better. You will recover. God bless you.
Hi all, my name is Colleen. I was recently prescribed Cipro 500mg twice a day for a UTI, a red alert pathogen called acinetobacter baumannii, very uncommon infection. Before I bought the pills I went home and researched, I found I had 5 factors to NOT take this drug. I’m over 60, on prednisone, have joint and tendon problems, have abnormal liver test results, and lead an active lifestyle with my work cleaning houses and gardening. I called my doc’s office and asked for another antibiotic, he said no, that I could end up with kidney disease if I didn’t take the pills. So I began, within 1 day my scalp felt like it was frozen, very strange. Then I started getting popping in my shoulders. It said on the website if you got these symptoms to stop taking the pills and call the doc. Well, after my last phone call with no help, I thought I’d just get thru the 7 days and hope for the best. Pray it killed the infection. The other antibiotics said to kill this are very few, it’s very drug resistant. The other 3 are injections 2-3 times a day which I wanted to avoid at all costs. Well now I’m paying for this decision. My body hurts in every joint, I can barely walk. I’m dizzy and disoriented, can’t drive. I have not been able to work at all. I lie around trying to avoid tearing or rupturing any tendons. I’m afraid to even move. My quality of life has gone down the toilet. I’ve done what they said online, no caffeine, no dairy, I’ve drank gallons of water. I’m scared to death of the ongoing reprecussions that still may happen, even months after stopping. I have 1 day left and want so badly to not take the 2 pills but am worried that the infection won’t be gone and I’ll have gone thru all this for nothing. I’m looking for herbal or natural remedies to counteract these side effects if anyone has any suggestions, I would be forever grateful. Why do they allow this drug to still be sold? There ought to be a law. I also blame my doc for his ignorance and laziness, to not look into this further before prescribing, after I told him my concerns. Not a happy camper here in Vancouver BC Canada. Thanks.
I took cipro to treat a “probable” infection 20 months ago that it did nothing for. My legs still hurt to the point that I have to wrap my left knee in an ice pack to leave the house not to mention the peripheral neuropathy in my feet. You have passed the tipping point and any more cipro will just do more damage. Your doctor is worried about kidney damage? My nephew’s wife spent to weeks in the hospital with kidney failure from cipro. I know you need to deal with the infection but consider trying another way.
Had to read your story again Lisa. Very inspirational to me. I’m starting to see an acuputurist chinese herbalist next week.
Hi Lisa, thank you so much for your response, I truly appreciate your time and concern, along with your kindness and willingness to help all us floxies. I have finished the pills now, have to wait a week to be retested to see if the infection is gone. If it isn’t then I’m going to go off the deep end. Had terrible pain last night in my butt area, I couldn’t even walk. This morning it’s my shoulders, they feel and sound like they’re ready to pop out of the sockets. Lots of popping in other areas too, feet, hands, etc. I’m being very careful to not overextend any joint or lift anything. So no work for me, for who knows how long.
I’m taking the prednisone for joint issues which started 6 yrs ago as Polymyalgia Rhematica then morphed into something else. I’m weaning off them, down to 2.5mg from 10mg and hope to be off by summer completely. You can’t rush it, your body needs time to make the cortisol again on it’s own.
I do plan on going today and buying milk thistle for my liver, glucosomine/chondroitin, probiotics, and raw organic honey. It will bust my budget but I think it’s important. I’ll try the epsom baths too for my poor butt and the apple cider vinegar. My ace in the hole is my naturopath, she practices neurolink, which has really helped me in the past. I have an appt. to see her next week. She cured my elbow tendonitis in 1 visit and the sciatica on both sides, it was 95% gone. If anyone has access to a NIS neurolink practitioner, I really recommend it.
I’ll post again next week after my tests, and visit to my naturopath. I hope my liver and kidneys have not been damaged. Liver results were already abnormal. I’ll include any of the home remedies that are helping. I’ll also be having a very stern talk with my regular doctor about his attitude and ignorance towards this drug.
Thanks again for your support and best wishes to everyone out there suffering from this atrocity. God bless.
hi lisa sorry of you replied before.. if you had twitching .. how long did that last for you… looks like you had a good holiday… hope your planning your next!
Very nicely written Lisa. You are so blessed that they understood your dilemma at work. Unfortunately for me my boss and friends had no clue what I was going through so they just assumed I had become a flake. Struggling with that has been the hardest of all. I appreciate your story and advice. Perhaps you should become a writer or columnist you definetly have a gift for it. This article was very helpful and healing. I wish you the best in the future and again, Thank you for taking the time. Lisa
Wow! Bless your soul! I have no idea how did I come across with your blog but very happy I did indeed. Your words very inspiring and would help loads out there who may be in a similar situation… Big love x
Hi lisa. I am suffering from severe neuropathy (all over my body) along with extreme muscle, bone and joint stiffness. I also have the tightness in my legs, particularly below the knees. Feels like my legs are going to snap in half when I bend. I am not sure if it’s from chemotherapy, Ciproflaxin or both. I was given cipro once during chemo when I was in hospital and once when I got home. Not sure why the first time as I was pretty sick but second time was for UTI. Good to hear that there is hope.
Did you have neuropathy? If so what helped?
Philippa
Hi Lisa,
I am going to be faced with a difficult decision soon. My doctor feels I need to take a topical steriod for a condition I had before I got floxed. I am now one month post-floxing, I still have tendonitis all over and peripheral neuropathy. She is very worried that if I do not take the topical steriod, the condition could become chronic. She has seen it happen with other people. It is skin inflammation that has lasted for about three months. I am very scared to take it because I am worried about my symptoms worsening, but I feel like I’m stuck between a rock and a hard place. I am also very worried about chronic skin inflammation. I don’t know what to do. I feel like either choice is bad for me. Do you know people who have taken topical corticosteroids? She wants me to take it for two weeks, apply twice a day. It would be a prescription steroid. I’ve only heard of people who have taken oral steroids who have had bad reactions. I really wish I had never taken the Cipro, my original problem was this inflammation and now I’m worried that I will have it forever. I was perfectly healthy three months ago and now I walk like sick old lady, small steps, only several minutes a day, a few days I was unable to walk because a foot tendon was so sore. The inflammation hurts and the peripheral neuropathy hurts too, in fact the neuropathy seems to be where the inflammation is also now as well as on my hands, lower arms, feet, and lower legs, and head skin. I am scared and I am running out of time regarding this decision. Maybe other people who have had experiences can help me decide, i don’t know. That’s why I decided to post my question here.
Hi Lisa, thanks so much for your reply on Feb. 11th. I’ve had a startling revelation. I was diagnosed with PMR > Polymyalgia Rheumatica 6 yrs ago, I was given Prednisone, and still take that to this day. Only a small dose now, as I’m trying to wean off. Basically PMR means “pain in many places = joints, muscles, etc”. My inflammation rates were very high.
When my symptoms got worse, earlier this month, from the Cipro I had taken for UTI I realized that it was EXACTLY the same aches and pains I had 6 yrs ago. I’ve searched back and WAS given an antibiotic about 3-4 months before that, for a large abscess on my neck, it was suspected to be staph infection. This drug was prescribed by the doctor at my job, there was no record sent to my regular physician. I do recall having to stop the pills after 2 days. I’m now certain I was floxed back then, no doubt in my mind. The company has since gone out of business so there’s no hope of finding any records but I am certain.
All I can say is, back then, the steroids saved my life. Within 2 days, I went from totally crippled, to being able to work again. Now, thru a friend, a pharmacist told me to up my dose again to 10 mg, something I was not willing to do, it took me too long to get down to the 2.5 mg I take today. I hope to get completely off the steroids one day soon, but this new Floxing has really set me back.
The worst is my shoulders, they continue to pop, I worry about tearing or rupturing a tendon. My work is very physical, I clean houses and do garden work. Luckily my clients have been very understanding. I’m going back to work today, I’ll give it a shot.
I call prednisone the magic pill, the best and worst drug out there. It has serious side effects. BUT it can give relief and allow people to have a normal life. Just throwing that out there for floxies that are desperate for some sort of break from the pain and suffering.
The mornings for me are always the worst, I can hardly get out of bed. Shoulders, neck, lower back, all aching and cracking. I eat, take my pred and 1 Tylenol Arthritis. By the early afternoon, I can get around OK. I’ve now added magnesium, glucosamine, a probiotic, and milk thistle for my liver. It takes awhile for these to start to help, so am patiently waiting for some results. Fingers crossed.
As I go forward, I just hope and pray, something gets done about these poison pills. My doctor apologized profusely for making me take them, after I had asked for another drug. But in the end, none of the professional people really believe this is happening. One person even had the nerve to tell me, my symptoms were all in my head, from reading online.
I’d like to thank you again Lisa, for the tireless help you give to us all, your time and dedication. You are a star. Bless you….Colleen in Canada
PS: Sorry I forgot to mention a few other things…..I’ve never had a car accident in my life yet have now almost caused 2. My brain is not able to judge how fast the other cars are moving and if I have time to cross a street, very scary. Also I do a lot of typing for a small ebay business. My fingers are not connected to my brain anymore. It takes me 10 times as long to write something, as I make mistake after mistake. Pains on the side of my head, like an ice pick stabbing, along with numbness, almost like it’s frozen. Has anyone else had these symptoms? Thanks
Hi Colleen, back in 2006 when I was floxed, I had a lot of trouble coordinating my fine motor with what my brain was thinking. My emails to colleagues were less than desirable (I was a literacy coach!), but with time I got it all back. I even went on to write a book which I could never have typed in that horrible condition. I’m very hopeful your typing skills will return. The cognitive “stuff” went away for me, and it made a HUGE difference in my recovery. I hope the same for you!
Thank you for this post. I am currently 5 weeks out from Cipro that I stopped halfway through because of severe exhaustion and muscle fatigue. It got better after I stopped taking it but I then started experiencing PN in my hands and feet, randomly. A few days ago, my knee popped and I cannot put weight on it. There’s not a whole lot of swelling, but it hurts to extend it. It hurts posterial to my knee but also anteriorly under my knee. I was diagnosed with a “sprain” but cannot help but think it is tendon related and I’m praying it doesn’t pop. I’m not one to share my medical info, but I’m hoping I can possibly shed light on this drug for more people. I’m trying to not be anxious about my current symptoms and your post is the first place I have found some hope! Thank you. No more internet surfing….just trust and hope for some better days.
Thanks Tammi for your response. I really have been afraid to drive since the pills, with the 2 scares/almost crashes. I now drive like an 80 yr old, which is fitting cause that’s how old I feel. I’m 61 but in the mornings, I hobble around worse than my Mom, who’s almost 85. I will hold out for improvement in all the motor skills. In the meantime, just wanted to ask if everyone has filled out a complaint with the FDA? They ask very specific info so be prepared for it to take awhile to fill out. The more cases they receive, the better the chances of having something done about this scourge on society. To think that Bayer is making money for causing severe illness, even death, is beyond comprehension. I wish we could make them take the pills, see how they like it.
I’ll be watching that movie for sure, thanks for letting us know. Just another word on the prednisone. To me it was a life saver. I read up on it and did NOT want to take it, the side effects were so frightening, but I had zero quality of life. I laid around trying not to move, I couldn’t work, driving was impossible, I couldn’t turn my head. In 2 days I was fully mobile and able to get back to my jobs. After a year of 10 mg I started to cut down. My rheumatologist gave me a weaning program that was much too quick, by the time I was down to no pills, I was worse than when I 1st got sick. This is because the adrenal gland goes dormant while taking the pred, it has to start to work again, producing the cortisol which controls inflammation. Now I only take 2.5 mg and I can function. One day I’ll get right off it but I think with the latest floxing, it will take much longer than I was hoping. I’ve also had very good results with a lady who practices NIS Neurolink. If there’s someone in your area, it’s worth the money. Hard to find one though, only 6 in all of Canada, 2 in the Vancouver area, and it takes months to get in. I book every month in advance and have gone 3 times now, with great outcomes. Much less pain. Cured my elbow tendonitis in 1 visit. I also had sciatica on both sides, she was able to give me a lot of relief with that too.
Even improved my eyesight, hard to believe, but true. Read up online, it’s very interesting stuff.
Tammy, I’m so glad to hear your cognitive/motor skills function came back enough to write a book! Did you have the head pressure/pain that some of us get?