*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.
Hey again,
I guess this is follow-up to my post above. Anyway while I was on the doxy nothing got better but nothing got alarmingly worse either (just joint/ligament/muscle pains shifting). Unfortunately it didn’t fix the urethritis/prostatisis/whatever and it’s run out. I wish I would never have gone to a doctor.
Anyway one of the things that’s been suggested that could be causing the urethritis is a mycoplasma genitalium infection. Supposedly can cause reactive arthritis and other issues.
Interestingly there seems to be an overlap between serious mycoplasma infections and floxing side effects, also maybe linked to gulf war syndrome: http://www.rense.com/general7/microplasm.htm . The treatment suggested is long-term antibiotics (mostly doxycycline, but they also suggest cipro!). (Though it conflicts with: https://www.ncbi.nlm.nih.gov/pubmed/15262663 )
Do you know of any people with fluoroquinolone toxicity that have been tested for mycoplasma infections as well?
This is a bit reaching since neither have I, and might be hard to convince specialist to get tested for it. But still forced to entertain the notion I might have something viral/mycoplasma alongside this or instead.
Hi, 19 year old here. Was at college got a bad bacterial infection had a 103-104 fever for 5 days, got better after taking a z pack. As a child I had a Lyme disease with a confection of bartenella and had mainly neurological symptoms. I had seizures that were described as non epileptic, and organic based. Tried many meds theougt childhood and after 6 years of battling cipro cured seizure that had plagued me for so many years, no more lyme or bartonella. The reason was based on that it allowed the meds to pass he blood brain barrier, it was a miracle drug. Anyways after this recent fever I experienced extreme anxiety and ocd like symptom( I have always had a little but this was insane). I also have had PANDAS which is what most likely originally caused anxiety. Anyways I took cipro for 2 and a half weeks when I got home and anxiety was strong might have gotten worse, came in waves. Looking online did not help. However after taking cipro developed occasional brain fog, hat would occur with anxiety. Thought this was a herx from bartonella, however, after 2 and a half weeks I have stopped. No tendon pain or neropaghy thank god, just really tired feeling/groggy and have brain fog/attention problems. Hope this all clears up, luckily after stopping cipro for a day anxiety vanished.
Having sisters and an ex wife brings me to this question and I understand it being a little strange but you mentioned starting your period. Possibly did toxic shock play a small part in your overall health at that tim? Also with what I’ve gone through prayer still plays a big part in my life. Lisa like you I can’t wait to get back to backpacking. I’ve been very fortunate in being able to spend time in Glacier and Yosemite to name a few and pray for the day I get to return. Good luck in all you do your a beautiful woman with great aspirations.
THANK YOU!!!!! I am crying tears of relief and happiness. Thank you so much for taking the time to put this out there. I thought I was going crazy, and I was losing hope.
Lisa! you are so inspiring! I look up to this as hope so much. I’ve only taken Cipro for 3 days and I can slowly feel it’s side effects. Do you think since I’ve caught it somewhat early and have completely stopped I may be able to avoid it or heal faster?? I’ve just started college :[
Lisa, thanks a lot for sharing. Very encouraging and full of hope. I like it a lot and shared on my facebook https://www.facebook.com/hongbo.guo
I am a floxie for 5 months and very similar like you that, I was athlete and now I cannot walk 15 minutes. I am taking anti-oxidants. Here I just need to say something about beet you mentioned.
I highly suspect it is the anti-oxidants that were working, if they did work on you. In beet, it is “Betalain”. In other fruit (blueberry e.g.) or vegetables (Purple sweet potato), it is Anthocyanin. Some literature show that anti-oxidants may help resolve the side effects of fluoro.
Betalain and Anthocyanin are powerful anti-oxidants.
Reference
[1] http://www.healingwell.com/community/default.aspx?f=38&m=2838200
[2] http://www.joomag.com/magazine/Fibromyalgia_&_Chronic_Pain_LIFE/37512/p28
Hope this may help some people like me.
Thanks
Bo
Hi Bo,
Nice meeting you! It’s quite unusual to see an Asian getting floxed, “Ni Hao Ma”?
I’m from Singapore. In Singapore, people using cipro and getting tendonitis seems rare. In fact, any complications related to cipro can’t be really found in our local search except 2 cases of elder with tendon problem, that’s all. in fact, i am Surprised many doctors still THINK it’s a safe drug!!
A click to your facebook tells me you are from China. That’s neat. I am currently seeing a acupuncturist from China too, she practice TCM in Singapore. She is my primary care. I totally lost faith in western doctor , simply they are ignorant of the medicine they prescribe and has no answer/cure/available help when you report side effects. Worst, they can’t really be bothered. what a harsh world out there.
I am a floxie for close to 2 months. My top problem is very bad ankle pain. I walk with difficulty. Some other symptoms seems to have lessened considerably like shoulder numbness, knee pain, tinnitus, fatigue. But Ankle pain is my greatest tragedy now.
Yes i am taking anti oxidant too, magnesium, mineral, CO Q10, fish oil.
How are you feeling now at 5months? do you feel better than when you were floxed? what’s the supplement you are taking?
I was telling my acupuncturist the other day that in China, this class of drug is already on black box warning in Oct 2013 but none is said in Singapore! how sad!!
Thanks for sharing the wonders of fruits here 🙂
May you recover and enjoy your running track soon!
Thanks
Hi Jan
Nice meet you, but so I wish we did not have to meet in a floxie community 🙂
Thanks for your response and questions. Here you may find something useful. Please do not hesitate writing to me, either through here or facebook.
In order to be objective, as I give out suggestions or answer your questions, you may find most of supporting literatures from my google drive
https://drive.google.com/folderview?id=0B_V_hwuNeoktdC11aFdkZzlmcEE&usp=sharing
and the links below.
———————–First
I suppose you already know this group https://www.facebook.com/groups/191063714251094/
It is very useful, in two folds: download the files on the group; ask questions.
However, please note you may get depressed by reading the files and communicating with floxies. It is critical to keep positive when you try to get information and help from other floxies. This is what Lisa’s “get off internet” means. .
——————— Second
I wrote some tips on the group mentioned above. I put some here for your convenience:
”
Any effective therapies, friends/victims ? Please share.
Here shares my own therapy:
1, take anti-oxidants [1]
2, do not take NSAIDs and corticosteroids [2]
3, Pray to God.
Seriously, it makes you feel better mentally, and saves you from depression that may cause other problems.
4, Time.
By time, I mean, keep your hope, do not give up. Do not do anything seriously stupid.
5, Do not suit your doctor unless your side effects are very severe. Law suit you probably can not win, it costs you so much time and money and make you even more depressed.
Reference
[1] http://www.healingwell.com/community/default.aspx?f=38&m=2838200
[2] http://articles.mercola.com/sites/articles/archive/2012/10/20/fluoroquinolones-side-effects.aspx (click the Comments and you will see “For most of us, that is to avoid corticosteroids and NSAIDs as these push many people who have been floxed in the wrong direction very quickly”)
Please note I am not a medical doctor, and my therapy may not work for everyone, even not for me. However, I have been taking anti-oxidants for 2 months, I do feel better. It might be the anti-oxidants, or it may be time.
God bless.
”
”
XXXX : What are the best antioxidents to take?
January 16 at 5:15pm · Like
Bo HongBo Guo: First I must say I am not a medical doctor. I do all the research myself and I have been seeing many different doctors to collect and filter their suggestions, and then at last I come up with this “therapy” So here is what I am taking: // Nutritions: Vitamin C, grape seeds extract, Coenzyme Q10, berries extract (I am not saying which brand I am taking, otherwise it sounds like advertisement…) // Food: cooked tomatoes (cooked!!), blueberries & cranberries (either fresh or dried, does not matter. literatures suggest that they contain the same anti-oxidants), oranges. Green vegetables in general are good of course. // At last , please refer to http://www.webmd.com/…/20-common-foods-most-antioxidants . Note that some reports indicate that soy, milk, coffee, and gluten may worsen, so choose foods with caution. see http://www.saferpills.org/resources/glossary/
Bo HongBo Guo http://www.joomag.com/…/Fibromyalgia…/37512/p28 Read the last paragraph. //It is reported that they used antioxidants and some other stuff and the patient recovered after 2.5 years. It may be the anti-oxidants that worked, or maybe just time. 2.5 years is a long time anyway.
”
——————— Third: DMARDS ? NSAIDs ? steroids ? long after fluoro ?
These are the three drugs that that rheumatologist may recommend most to floxies.
I trust you already know that floxies say that they should avoid NSAIDs and avoid steroids.
Here I just need say that, according to my own experience and the info I collected from other floxies, that:
AVOID NSAIDs, steroids, even after you have discontinued fluoro drugs.
Why: There is some theory (maybe the theory is wrong) that the fluoro’s half life is about 1.5 years in our body (google “flox report” , pdf document).
DMARD: I really do not know. I initiated a discussion on the facebook group mentioned above, but did not get any meaningful result. It seems that there is risk taking DMARD because it can interfere with collagen production. Collagen is critical for tendons and cartilages.
Especially, note many pain killers such as Advil is NSAIDs. Many Asian girls have to take it for the monthly reason. Be careful. If you have the monthly pain, try something else: rose flower in hot water, Wuji soup (black chicken soup) 3 days before the menstrual period. It helps reduce the menstrual pain and avoid pain killers.
—————– FOURTH
To answer your questions “How are you feeling now at 5months? do you feel better than when you were floxed? what’s the supplement you are taking?”
Timeline:
May: Half Marathon
June-July 2013
I was given 6 weeks Cipro (yes, six weeks) for suspected UTI, but actually all lab test result was negative. In the end, urologist diagnosed me as alpha-fiber stimulated urethra spasm, which is not disease and need no treatment.
August
Feet pain, mainly on plantar facia.
Sept: better, can do small hiking again.
Oct: better, can climb intermediate mountain. Taking 10 days of NSAIDs as prescribed by doctors.
Nov: much worse. One day, Nov 16yh all of a sudden, everything went wrong. Wide spread joint pain, more painful than the feet. (I am not sure whether it was due to the NSAIDs I was taking. Fluoro shows its evilness months after you take it, as you know, so it maybe just time).
From Nov 18th, I began to take anti-oxidants and the VC-flush bi-weekly (http://www.endfatigue.com/tools-support/vitamin-c-flush.html).
Dec: getting better slowly.
Jan 2014 (today): getting better slowly.
Supplements I am taking: Mainly anti-oxidants.
anti-oxidants nutritions: Vitamin C, grape seeds extract, Coenzyme Q10, berries extract
anti-oxidants foods: cooked tomatoes, blueberries & cranberries, oranges. Green vegetables. Beets may be useful as Lisa suggested.
cheers
Bo
Long story short:
1, Keep Hope
2, Take Time
3, Avoid Drugs
Hi Dearest Bo,
Zao An Ni Hao!
Thank you for your wonderful sharing and opening your hearts to me and us. No doubt, again, every day we rise up thinking if today gets better and live through the day with some pain, like you said, have hope and believe someday this will come to pass.
Give time a time to heal..no matter how hard 🙂
Sigh, i think it’s extremely difficult to track how many people are floxed in Asia countries. question is what if we really have some good numbers? what can the medical field do about it? problem is doctor are too closed minded and they give what they think is right, even though clearly they are wrong. Seriously, the odds are just against us. i have talked to many doctors in my country and they all said it’s “rare”. rare? sure? have you tasted your own medicine? and is it even necessary in the first place? to trust your candy and die in your hand? in short, many doctor don’t know it’s that drastic and prescribe thinking it help you. in my case, i found out cipro is not needed. but despite other doctor claim my dosage is pretty strong for 10 days for an uncomplicated diverticulum with no infection, 10 days isn’t enough to kill me. it must be in months and months of cipro to get such pain. again show how ignorance they are if only they listen to patient stories and look up the net . (to my horror, Probiotic is what it takes not cipro to solve my right ab pain even after a CT scan. see i should be alert to point out why cipro is still needed even without infection. so Hardest Lesson Learnt – don’t nod your head to everything your doctor hand out, learn to use my common sense and Ask questions !! seriously what a Hardest lesson i have ever learnt!) I trust doctor “do no harm” to help me get through this nightmare easier than to think the prescribing doctor is out to make profit. anyway, lets’ not talk about how we landed here (okok though i talk some already haha), it’s really really painful and lets’ march forward bravely for our recovery!
My acupuncturist told me she has just met 1 lady with cipro poisoning while she is practicing western medicine in Shanghai hospital. She later swapped to doing TCM because she realize how toxic western medicine is.
Thanks for sharing the facebook group, yes i’m aware but i joined and cancelled…I just got upset seeing the word “toxicity”. lol!!
oh yes, speaking of grapeseed, i’m taking too. my acupuncturist strongly recommend it, she said grapeseed has 5 times higher antioxidant property than vitamin c.
grapeseed also helped this victim who struggled for years and he has recovered, word of encouragement for you, please read the last paragraph:
“Final advise, stay away from pain killers early on. I found a disturbing coloration between those who took pain killers and those who had nerve pain that never went away. I had a tremendous amount of nerve pain and most if not all went away, I had read that chemically induced nerve pain normally repairs, so I waited it out and it seems like it did.
A friend of mine said (David), things will get better, and they did and still are. ”
Feel good right!! yes there is hope !! it’s not permanent even it takes us some years but still there will be some good times! we will recover! steadily but surely, we will reach there 🙂
have you tried Whey protein too? i noticed it’s isn’t on your list. there are many success stories on whey protein. think due to it’s strong list of amino acid, glutathione – our master antioxidant. i once read some success stories and whey protein is their must have to build their muscle, promote and repair tissue growth.
there are 2 facebook pages i recommend for you:
Heal Thyself! – where i first learnt i was floxed after my 10 days of Cipro. somewhere 23 or 24th of nov 2013, they talk about the world’s deadliest antibiotic that got me shocked..that’s how i started to know i was….just floxed!!
Alternative Health Solutions – holistic, wellness healing. good for natural healing without toxins!!
Lets’ recover together, Bo!
PS: i just sent a facebook friend request to you, hope we can connect. like many , i used to have hundreds of friends who after i was floxed, i started to delete them off. mainly they started to complain about small things in life and i thought how shallow, unappreciative healthy people can be – i felt like telling them, have u seen what has happened to me? but i guess no one cares so i cut them off. i really got frustrated when people starting sharing their travel plans, great hunt out during Christmas time..so i shrunk them down to only my family members now. sigh, disaster like this not only change our life, it also made us depressive of the life we used to treasure or look forward.
connect soon 🙂
thanks for listening, Bo!
Hi Lisa and guys,
Another great health site to check out is called Naturalnews.com 🙂
Fb: NaturalNews.com
Many great health care and how to heal the natural way articles ! Enjoy!
Love
Jarene
Dear Lisa
I want to thank you so very much for your story. I believe I am a new floxie as I only finished my antibiotics about 3 weeks ago.
Your story has lifted my spirits and I now have hope that I too can recover.
You will never know how much this means to me.
Thank you!!!!
Greetings from South Africa 🙂
I was so glad to come across this blog. I have recently been searching the web for help from adverse reactions to a Cipro and have found a lot of old news and sites that are no longer active. I feel so dumb having had this happen since there was so much into out there already–like I missed the information boat and my body us now paying a price for it. If anyone knows of any support groups or doctors that could help me navigate through this in the Fort Lauderdale Fl area please let me know…
Here’s my story:
I had a UTI and went to the doctor. I had her run my blood for some on going joint pain (she did blood testing which came back clear) and she put me Cipro for the UTI (urinary tract infection) I got very very sick three days into the dosage and was almost debilitated when my daughter found the side effects of a Cipro were dangerous, especially for anyone who has joint pain. It said that doctors should not prescribe for people who have joint pain. This frustrated me because that was the reason I had my blood run–(joint pain).
My daughter then asked me to call the doctor and tell her I was having a bad reaction and switch my antibiotics (which I did). But I began struggling even more with pain so I went back the the doctor. On the next visit… A month later she ran blood again. This time my blood levels were off and low ferritin was found (after having taken cipro). That’s when I was sent to a hematologist .
I started googling cipro to find out more info and found that it causes the identical pain in feet and hands, joint, muscle, tendon and over all aching, shaking inside, tremors, heart pain and rapid heart beat, muscle weakness (all the things I have been experiencing since having taken cipro).
Today after researching it even further found that cipro can cause hematological problems (Anemia). Also found out it can cause gastrointestinal bleeding… Which would cause low ferritin…
Thanks for your story Lisa. I took the lowest dose of cipro possible (250 mg) twice a day for 5 days. I was afraid to take it but the doc said it was the best for my problem (epydiitmitus). I have had every symptom you had. On the 5th day my legs felt like they were on fire. Then it started to spread to my whole body. After it hit my brain I thought I might die. I don’t trust doctors anyways and after getting on the internet I was afraid of what the doctors would do so I did not go to emergency. I got a glutathion IV and I think it saved my life. I got a second 2 days later but did not notice much the second time. I could not drive for 5 months. I went to a chiropractor who did acupunture and I noticed an improvement after the first treatment. I was driving again after about 3 treatments. I was still in a lot of pain but I could drive.I am now in my 8th month and I got back on the internet because I was starting to feel I would never recover. I am still having way too much pain but usually after I try to do something normal like walk up a hill or shovel snow. It is encouraging to read about people who do recover like you did. I was looking for something for pain relif; herbs like boswellia or hops. Anybody try that? The recovery is just so slow. I believe everything happens for a reason but I am tired of the pain. I don’t believe in victimhood so I blame myself for being dumb enough to take this stuff. I rarely take antibiotics but I was in a lot of pain so I thought I’ll trust the doctor and take a risk. I think my big lesson is to forgive myself but I still refuse to accept that I am a victim. I am studying The Course In Miracles again, very heavy stuff. It says that the Holy Spirit is essentially you link to God and is actually a higher aspect of your self. And that pain is very much related to guilt. I believe this to be true. The lesson is to do as Jeshua Ben Joseph (Jesus) advised: forgive your enemies but most of all forgive yourself. Forgive the doctors even if they are dumb asses which they are. If anyone has some advise on herbal pain relief let me know. No more drugs for me.
Bob
Lisa thank you for your story. I too was poisoned with Cipro. I didn’t realize it until about 4 weeks ago. I was given a prescription (500mg twice daily for 10days) for a sinus infection. After 3 doses I couldn’t walk on my right foot my heel hurt so bad. My calf in my right leg felt like someone was ripping it out. I started having pain in my shoulders, arms, legs, feet, ankles, knees. I started having severe panic attacks, pain in my chest, I had a horrible pressure in the top of my head,muscle jerks all over my body, eye twitching, my neck hurt, my blood pressure went up to 170/113, I had ringing in my ears and when they aren’t ringing I hear a thumping sound, I got thrush in my mouth. 4 weeks later I’m still having almost all of these symptoms, plus a week after stopping I started having diarreha, acid reflux is horrible, indigestion. My stomach constantly sounds like a thunderstorm is raging out of control inside. The bad part of my story is not realizing til now that this is the second time I was poisoned with these types of medicane. August 22,2010 I was admitted into the hospital for phnuemonia ( not even sure it was bacterial). I’ve recently found out I was treated with (Levaflox) not sure if thats exact on spelling, but you get the picture. Mind you I had never been sick in my life and had never been in a hospital except to give birth to my only son. Was very active and healthy, and worked a full time job. After being discharged back in 2010 I was never the same. I knew things weren’t right when I was in the hospital at that time. Time they started my IV’s I started having panic attacks which they treated with Zanax. I didn’t know what was happening to me cause I had never experienced a panic attack in my life. I felt completely paralized, I honestly thought it was the end for me. Since that time until now, I have been to doctors galore. I have been diagnosed with carpul tunnel in both my arms, tendonitis in my left elbow, some type of nuerapathy condition in both my legs (worse in left leg), stenosis in my c-5 and c-6 vertebres in my neck and have also developed bone spurs on them as well,I had been treated for anxiety and panic disorder up until about a year ago when I decided I wanted off those meds, I was being treated for reflux (came off those meds too). I had MRI’s, CT Scans, Nerve conduction test, X-Rays, Colonoscopy, Barium Inema (spell ck), ultra sounds, cardiac stress test and ultra sounds, and the list goes on. Long story short up until 4 weeks ago my life was slowly after almost 4 yrs getting somewhat back to normal and then I go to an idiot Dr. who gives me Cipro for a minor little sinus infection and flips my world upside down once again. This dr was not my GP. I went to a clinic, it was a Saturday morning and couldn’t get to my doc until the middle of the next week. I just wanted some relief, I didn’t want to be poisoned again. Needless to say, I found your story about 2 weeks ago. I am up reading it tonight because I started having a panic attack after I went to bed this evening, so to get my mind somewhere else I got online to read your story again and try to get some kind of peace of mind. I am so angry with myself and the Dr that prescribed this medicane to me. I called that Dr back that afternoon and asked him to change the meds cause I was not familiar with it and I did not feel comfortable taking it. He assured I would be fine. Shame on him…..shame on me, because of how I felt about it to start with I should have never taken it. Anyways I’m not going to go on and on, just wanted you to know that your story gives me hope and I pray that all of this will get better sooner than later. It has taken me so long to get straightened out from the 1st time this happened to me. Hope you are still getting better as well and Thank you for listening to my story. Bridgett
Hi Lisa,
What are your concerns about Cat’s Claw? My accupuncturist prescibed this. I’m not sure it’s done any good, but I’m not sure it’s done any harm either.
Thanks.
-brian
Probably the best write-up I’ve read! Thanks for sharing such an inspiring story! This is a great story to share!
Lisa
Thank you for your beautiful story! It seems all to familiar to me, approx 2 years ago I was prescribed Cipro for a misdiganose of pneumonia. Yes I didn’t even have anything but a chest cold, I took over 3 1/2 days 7 pills of 500mg of Cipro. By the 3 1/2 day I had experienced: Muscle weakness in my legs, anxiety attacks, twitching etc..I immediately new something was wrong I stopped taking the prescription. I have been through almost the same timeline of healing process. It started with a holistic doctor in my area I went to see on the 5th day. He immediately could see I had been affected from this drug. He used a lazor type holistic approach, I was in his office for 3 hours the first visit and left with hope he could help me and most of all he believed me. My husband was my biggest support and I thank him for that he kept me calm and focused I had never felt so desperate for answers. I continued to see this doctor 3-4 times a week for months and felt results every time regaining my strength walking and detoxing this poison. I too began to swim every night and felt so much stronger in the water. Also most importantly I began a week later taking a magnesium powder drink called “Calm” you can get at your local health store and bathing twice a day in epsom salt. As well as taking vitamins and herbal supplements similar to Lisa story here. When I read the part in Lisa’s story about how she loved to dance it made me tear up, I was suppose to preform right when this happened to me and I had to take some time off from dancing. It has been approx. 2 years for me I feel I’m 95% better and have been back to work and taking dancing, yoga classes again. The only noticeable side effect is I have twitching from time to time but something I can deal with. My heart goes out to those affected, but wanted to give someone hope that you will and can heal from this and I can finally say that after all this time. Thanks Sarah Burton age, 34
I am glad to see everyone improving. After 25 months, I continue to have right ankle pain, though, I can accomplish more, I feel a burning sensation in my face, and my fingers are still tender and feel mildly swollen, and I have zaps of pain that come and go through out my body, and my right eyeball has been hurting for the last 7 months. I think it is the tendon that attaches for eye movement (ophthalmologist diagnosed mild retinal tear that is new, though not related to the pain).
Any hope that I will over come the residuals? I guess I need reassurance.
Thank you for telling us of your trials and accomplishments. It especially gave me hope regarding my mind. I am about two years out from taking Levaquin. Unfortunately, my mind continues to gradually worsen. Maybe, within the next year, it will begin to improve. Since it is taking so long, I have considered that I will go into dementia or Alzheimer’s Disease, as my mother did. I will continue to pray for healing.
I know you mentioned that your memory had improved, but that you still experienced some problems. Are you continuing to have brain fog? I pray you will continue to improve. Thank you. Chris
I took Cipro in June last year and had severe side effects. I have had some improvement but have periods that my pain is so bad in my legs that I think I will never recover. Keeping hope alive is difficult. It helps to know some do recover.