*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.
Lisa and all,
This site gave me such hope and support in the fall of 2015 when I was floxxed by Levaquin. I had Neuropathy and brain fog and muscle weakness. The neuropathy was the worst part because it really impacted my work and personal life. I am very grateful that the issue resolved in about 4 months. So hopefully this will go away for you too – but I am not sure it ever fully resolves so Lisa here is my question. I have a small herniation in my C5 cervical disc. I was stupid and lifted something too heavy. SO of course I injured myself. My physician who is an expert in this field wants me to take a Medrol dose pack. This is a corticosteroid to reduce inflammation. My fear is that this drug will somehow cause a relapse. I did take Prenasone for an allergic reaction to amoxicillin with no issues last May 2016 but it was small – SO is there any evidence that months or years later taking a drug like this could cause a floxie problems? Thanks so much and take care all, be patient although I know its very hard.
Please email me I’m in hell I feel like I’m reading the last 3 was I’m 56 I’ve aged it feels like 20 years. I’m
Lisa- I am going through everything you mentioned.
I took same antibiotic as you and have been
Deteriorating ever since!
This is my second major toxicity to an antibiotic in this family of antibiotics. First time around drs thought that I had MS. My pains in my legs were so unbearable I could hardly walk. Went to endless drs. No one diognosed it properly. There were shorting leg electrical feelings that were unbearable the first time through. Trying to remain hopeful that all my itching, exhaustion, leg pain and electrical feelings, brain fog , pain in rotater cuff so bad I can hardly lift my hands because of pain ,pains in all my tendons and I am opening a business in next few weeks… so maybe done stress. ????
These medicines should never be on the market. I had a UTI. I am severely sick from sonething that was trying to make me better.
Thanks for the hope you send. I got through this once. I’m going to get through it again!
Sincerely-
Lisa
Thanks for posting.
My mother in law is bed ridden and cannot walk. She had surgery on her to allow her to straighten her feet
No doctor could discover the cause of her symptoms until a physical therapist asked if she had taken Cipro. She had taken Cipro for more than ten years to combat chronic bladder infections. Her symptoms align with cipro toxicity.
Im suffering at the moment I’m glad you’ve given me some hope I will try to keep it in mind. But do u know for sure it will eventually go? I’m constantly reading 30% of the time it’s permanent.
I took 2 cipro tablets last week for a uti..but immediately felt things werent right…no sleep, tingling etc. Went to doctor and stopped and am now on day 4 od therapy with ceclor for my uti.Today i have muscle like cramps in my leg calfs …..and my digestive system is not so good…constant need to empty my bowels. I was putting this down to either the infection itself or the ceclor but now I believe it could be reaction to the two cipro tablets….do u agree…can two tablets do damage? I am taking a daily probiotic capsule too
Very good read. I took over 60, 500 mg Cipro tabs over 30 days and have a story very similar to yours. I had so many doctors involved and the only one that new exactly what was going on was my gastroenterologist. One of the top 3 in California. He told me the truth about Cipro and what the public does not know and me being a former medic in the military for 20+ years I understood everything. I was not in shock but knew I was floxed. He went on to tell me that many doctors in the US have been watching this family of drugs for 6-7 years and time and time again people were becoming very ill and disabled and the only thing I can do to start the healing process was a list of things like yours. I can say it has worked and I am at 97% now and it’s been 16 months. The one thing that helped more than anything for me was VSL3 probiotic. Without question within 2 weeks everything started to heal and I was so shocked that I thought I was getting sick with something else but it was my body healing. I wasn’t use to not being sick. Day by day, week by week I started to heal. I responded to the other guy who had the “cipro is poison” page and told him CSL3 and getting out and actually moving are your best two things to do and get your mind on other things. Read a book at the beach. Walk your dog for a mile or two a day but just don’t lay in bed. Being active with baby steps, VSL3 and drinking plenty of water with fruits has been my key. When my mind gets occupied with other things I have no issues. I can drink soda again but for a long time I would get sick with just a sip of soda or 7up. Shoot me a response if you want to know what my gastroenterologist said. Glad some of us are healing and others will too. Oh, last thing… he told me if I have to take any antibiotics again I should to take CSL3 with them. That’s a Zpack to whatever. I asked how long and he told me for the rest of my life. That was his recommendation. Anyway I am off to finish a book!
Forgot to add that I have a few things lingering and thats the reason I am not 100%.
1) Healing of simple cuts is still prolonged. What took a few days now takes 3-4 weeks.
2) I can walk miles but not 10-20 miles a day.
3) I can take NSAIDS or steroids, they don’t bother me anymore and don’t trigger a reaction. That took 14 months.
4) Very slight tenderness behind my eyes still. That’s lingered a long time. No detached retinas.
5) Insomnia is still there. That’s been the worst.
6) Dreams every night. That’s the weird thing. Before being floxed I would get 1 dream every 5 years. After floxed it was 5-7 a week.
7) Bowel movements are still a little irregular. Much better being on VSL3 though.
That’s about it. Sounds like a lot but in reality it’s down from 30+ issues.
Remember this was after taking 60+ tabs of Cipro 500mg tabs over 32 days. Floxing symptoms started a week after starting.
What suggestions does anyone have for the types of anti inflammatories that can be used post floxing other than steroids and nsaids? Hate taking Tylenol because of the impact on the liver. I seem to struggle with medications and supplements sometimes – I wonder if I still need to be on a regimen of things that helped during acute floxing stage. Any ideas? Keep the faith everyone. We are all in this together
I have read this story countless times and it gives me hope. No one will ever tell me that my problems are not caused by the three rounds of Cipro I have been on in the last nine months. The worst symptoms for me are anxiety, insomnia and restless legs. I have started acupuncture and praying that as well as time passing will help.
I have been having uti for over 5 years now. tryed all types of antibiotics, including cipro several times for weeks even, and all kinds of natural remedies, but nothing seems to work. i still have a painfull uti that it’s killing me from all persppectives (had to quit the job, no social life, no availability to event do broceries or such).
i was just thinking of trying cipro again, but then i came across your post … so i might re-think my options, but then again i don’t really have any options than i haven’t tried 🙁
I am five years Post heart double lung transplant. I have Pueudomonas a lung fungus that can effect lung tx patients. The treatment has been Cipro and Levaquin. (And other additional meds at times.). As a transplant recipient prednisone is manadatory for life. Father this last treatment I now have neuropathy, weakeness, and ruptured calf tendons. I was warned it could cause the tendon ruptures but nothing else. Thank you for sharing your story. You are a fast learner. I lived my whole life with serious health problems and it’s taking me a long time to learn to be patient with myself. Thank you for sharing.
Thank you for sharing, I had an open shattered knee and femur. Polyosteomyalitas. Cipro for 6 months. I thought the brain injury and trauma was causing the anxiety and panic. Then the unexplained nerve pain and muscles, ligament and joint pain. Joy Scott
I finished a course of the antibiotic for problems with my prostrate. After about two weeks I felt like muscles in my legs were collapsing. Went to the doctor who prescribed the drugs he went white in the face whenI described my symptoms. He advised me not to do anything like walks up till running etc. I actually cannot run now. Besides an anti inflam tablet have me nothing else….I am now suffering with the pain in my legs in going. Fortunately at this time have no other symptoms but lots of worry and dread. Have started taking slow mag after reading your article. Thanks for giving me some hope best wishes david
I just read this complete post and I thank you so much for sharing it. I have been crying as I read it. It is so good to know that someone knows exactly how I feel. I am going to use your tips and keep trying. You have inspired me to listen to my body and do the exercises that will help me without causing pain. I had physical therapy last year for a knee problem and they were clueless about my thigh pain. I have been talking to a trainer at my gym and they are clueless too. They always advise some type of exercise that increases my pain. I am going to go with my “gut” and do what I know is best for me. I can’t thank you enough for this post.
Hi Lisa
I’m so relieved to have found you. My husband has changed beyond recognition in the last 8 weeks. A week after finishing a 4 week course of Ciprofloxacin for prostatitis. He struggles to walk, has “inner tremors ” dreadful anxiety and depression which he has shown no sign of in 16 years. I thought he was becoming a hypochondriac. Last night we found you! Thank you so much for taking time to do this. We feel positive today. We will re build him, slowly and gently.
Lisa,
Are you still getting good reports about Progressive Medical Center for fluoroquinolone toxicity? I don’t think I would want to be as aggressive in my treatment (with the IVs) but I would like to see through their testing what areas of my system I could work on. Also did you find that after the toxicity, you had trouble taking some supplements? I have an anxiety reaction sometimes with something new (as simple as iron). Thanks. Deb
Lisa – I took 5 doses of antibiotics (HP Pac) prescribed by my doctor, for H pylori infection in my stomach. After the 4th dose, my abdominal muscles spasmed 3 times in a row. The next day, I felt so sick, I stopped the meds completely. That was 2 weeks ago. Since then, my symptoms have gotten worse. But the one that scares me the most is the muscle tremors, spasms and twitches. They are terrifying. All the doctors have dismissed my concerns. The meds I took were: Prevacid (500mg per dose), Biaxin (500mg/dose) and Amoxicillin (1000mg/dose), at 2 doses per day. I will follow your guidelines, especially about acupuncture, but is there anything else you can suggest?
I am so glad that you recovered.
Maryanna Derk
Vancouver, BC
Canada
Thank you so much for writing this u are blessed and just thank you so much your story was perfect for me to understand. Thank you
-summer
Lisa, I am desperate!! I am 3months out and in the last week I got hit super hard in my ears/vestibular nerves. I am hearing roaring and pulsating in my ears to a point that I can’t even sleep or think. Anxiety is cranked up full blast and I am so off balance I can barely get around! I read that you had balance issues. Do you know anything that can help me?? This is absolutely horrible.
Dee