*The following is an individual’s story of surviving fluoroquinolone toxicity. It is not medical advice. Please see the disclaimer at the bottom of the story. Thank you, and please be cautious with all treatments.
Lisa’s Story
In the middle of November, 2011, I took Cipro to treat a urinary tract infection. I took 2 pills (500 mg each, I believe) a day for three days. I didn’t feel like the infection was gone, so I went back to the doctor and requested more antibiotics. He gave me macrobid and the infection subsided within a couple of days. Life went on as normal for the next couple of weeks, until December 2, 2011, at which time I got my period and started taking ibuprofen to help me to deal with the cramps.
Before I continue with my story, I would like to note that I had taken Cipro to treat a urinary tract infection approximately a year earlier. I had no notable side effects at that time. Though, looking back on things, I did develop an eyelid twitch at that time and some strange stomach cramping that came and went started then. I didn’t think anything of the eyelid twitching or the stomach cramps. I certainly didn’t think that they were tied to the Cipro. I took ibuprofen regularly after taking Cipro with no adverse effects.
On December 2, 2011 my legs started to itch. On December 4th I broke out in hives all over my body. I went to the doctor and was told to take Benadryl. I took more Benadryl than the box recommends and my hives got progressively worse. On December 5th my feet and hands swelled to the point that I couldn’t use them anymore. It was painful to walk, or even to just stand. I went back to the doctor and was put on prednisone. The prednisone suppressed the swelling and calmed the hives a bit. On December 7th my left leg went weak. For the next few weeks the following symptoms got worse and worse:
- Weakness in my legs. I could barely walk. The steps that I could take took a tremendous amount of effort and energy. I couldn’t stand for more than a minute. I had to drag a chair into the kitchen in order to cook rice because I couldn’t stand to stir the pot.
- Tightness of the tendons in my legs. I had inflammation, and possibly tears, in most of the tendons in my legs and feet. My hips, knees and ankles, to simplify things, didn’t work right.
- Loss of use of muscles / loss of strength. My muscles, especially the muscles in my legs, wouldn’t move like they used to. All of my movements were slow and deliberate.
- Brain fog. I couldn’t think straight. I felt stupid. I couldn’t concentrate. It was a struggle to do my job.
- Loss of memory. My short-term memory decreased significantly.
- Loss of peripheral vision. Large, black floaters entered my peripheral vision.
- Loss of appetite and weight.
- Loss of flexibility. I went from being able to do yoga several times a week to being unable to sit with my legs curled up under me.
- Loss of balance.
- Severe loss of energy. I felt like the plug had been pulled from my energy source. I wasn’t necessarily sleepy, I was just drained. The feeling was similar to the feeling that I have when I have a cold – weak and like I just want to collapse. Just slight exertion would drain me of my energy. Walking would make me tired for a whole day afterward.
- Dry mouth.
- Anxiety. I had an ongoing anxiety attack for the first couple of months after being floxed.
- Pain in my feet. I felt like I was walking on hot coals with every step I took.
- Loss of reading comprehension. I would read a page and have no idea what I had just read.
- Loss of social skills / connectedness. I felt anxious and scared in social situations. I lost confidence in both my physical and mental abilities. I felt very alone despite having a wonderfully supportive family.
I felt as if I had aged 20 years in just a week or two. I couldn’t move, think or eat. My body and mind were falling apart and I had no idea why. I didn’t think that the sudden decline in my health had anything to do with the Cipro. After all, I had stopped taking it a couple of weeks before my body started to fall apart. I thought that I had an autoimmune disease. My symptoms seemed similar to those of rheumatoid arthritis. I went back to the doctor and they ran every test imaginable on me. I was relieved to find out that I didn’t have an autoimmune disease, but it was somewhat frustrating to hear that all of the tests were showing that I was normal and healthy when, clearly, I was neither normal nor healthy. The doctors did not provide me with a diagnosis or a prognosis. Though I was desperately seeking a diagnosis and prognosis, I am thankful, in retrospect, that they didn’t misdiagnose me. If I had been mistakenly diagnosed as having an autoimmune disease, I may have treated it with pharmaceuticals that could have made me feel even worse.
I was desperate for some treatment, something to stop the downward spiral that my body, mind and spirit were in. The traditional medical doctors I saw provided no relief, treatment or healing. I started seeing an acupuncturist. He was able to stabilize my condition, calm my nerves and keep me from spiraling physically or mentally. After a few weeks feeling stable physically, I started to have days where I felt better than I had the day before. Mentally, I kept going downhill for a while, but, eventually my mental health stabilized and started to improve as well.
Eventually, with the help of my acupuncturist, I connected my symptoms to Cipro. Once the connection was made, I realized that all of my symptoms were consistent with those of others who have been poisoned by Cipro and other fluoroquinolone antibiotics. I entered the scary world of being a floxie.
For about a year, I considered myself to be sick. Though the symptoms listed above were improving, slowly but steadily, I was still sick, and a long ways from the healthy, active, energetic woman that I was before I took Cipro. After a year, I started to put “sick” in the past tense. Though I wasn’t back to the level of health that I was prior to being floxed, I was getting better and, as far as most people could tell, I was well.
Following is a list of things that I did to help me to get well, to heal. I am not a doctor. This is a description of my experience and what helped me. I hope that what helped me helps you. Everyone is different though. What helped me may not help you. One thing that I know helped me and that I know will help you is hope. I hope that the fact that I have largely recovered helps you to have hope. I hope that the other steps that I took to get well also help you to gain hope and healing.
Please feel free to contact me with any questions, comments or concerns, or to share your story.
Lisa’s Healing Tips
One of the many frustrating things about fluoroquinolne toxicity is that everyone’s body is different. Everyone’s symptoms are different and everyone’s body reacts differently to treatments. Following is a list of things that helped me. I hope that what helped me will help you, but it may not. I am including other people’s healing tips as well, in case their tips can help. Of course, please read these tips with the typical disclaimer in mind – I am not a doctor or medical professional of any kind. I am sharing my experience with the hope that others may find it to be useful. Please ask your doctor, or other trusted medical professional, for medical advice, and before taking any of my advice.
In no particular order, here are the things that helped me to heal.
- Time. With time, I have healed. Each day is better than the day before. Time will heal your wounds too. Eventually, you will get better. The poisonous reaction affecting every part of your body will eventually stop and you will begin to recover. I have heard several stories of fellow floxies having a timeline similar to mine – slow, steady recovery for about 2 years. Other people take more, or less, time to recover. Time does help though, and most people do end up getting better as time goes on. Very few people get worse and worse indefinitely. There may be bumps in the road, but time is your friend. Time will help you to return to a state of health.
Try to be patient with yourself. It will take time for your body and mind to heal. I see this whole ordeal of getting sick as a lesson in patience (and compassion, gratitude and health). Pushing yourself too hard too soon can lead to pain, frustration and injury. Try to give yourself the time necessary to heal, and, with time, your body and mind will, indeed, heal.
- Avoid NSAIDs and steroids like the plague. Both NSAIDs and steroids are contraindicated with fluoroquinolone toxicity. They will make your reactions and symptoms worse. There are some published medical articles on PubMed about the contraindication between NSAIDs/steroids and fluoroquinolones. Searching at the library or on Google will give you more detailed information than I can provide. Anecdotally, I know that my reaction was triggered by taking NSAIDs (ibuprofen that I took to help me to deal with menstrual cramps) and it was exacerbated by taking prednisone (a steroid). Please note that I did NOT take NSAIDs or steroids at the same time as Cipro. I took ibuprofen 2 weeks after I finished taking Cipro and it triggered my toxic reaction and I took prednisone 3 weeks after I had finished taking Cipro, after my reaction had started. I will never take another NSAID or steroid again.
Unfortunately, NSAIDs and steroids are the drugs that are the most commonly prescribed drugs used to “treat” fluoroquinolone toxicity. This is because the combination of NSAIDs/steroids and fluoroquinolones does not always cause a toxic reaction, the toxic reaction of combining fluoroquinolones and NSAIDs/steroids can occur even when the drugs are taken weeks or months apart, doctors and other medical professionals don’t acknowledge fluoroquinolone toxicity and so they don’t look for the contraindications and because many of the symptoms of fluoroquinolone toxicity are treated with NSAIDs and steroids. The pain killing qualities of NSAIDs and the swelling reduction qualities of steroids make them the drugs of choice for treating many of the symptoms of fluoroquinolone toxicity. Don’t take them though! In my nonmedical opinion, I suggest taking non-NSAID over-the-counter pain medicine like acetaminophen (Tylenol) for pain (or marijuana – which is probably better for your liver), and antihistamines for the swelling.
Often, fluoroquinolne toxicity is misdiagnosed as an autoimmune disease. In particular, it is often misdiagnosed as rheumatoid arthritis. Many of the drugs that are used to treat rheumatoid arthritis are NSAIDs. Don’t take them.
- Acupuncture. I credit my acupuncturist with saving my life. I can only guess how I would have fared without my acupuncturist, but I imagine that I would have ended up in the emergency room, pumped full of steroids and antidepressants, having a massive anxiety attack and unable to walk. That didn’t happen though and there really isn’t any point in surmising about what could have been. I do know that acupuncture stopped my downward spiral and got me on the road to recovery. Both the acupuncture needles and the herbs that he provided gave me immense relief. I don’t know why or how acupuncture works, but I do know that it worked wonders for me.
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Supplements. I have taken more supplements than I can remember. 90% of them had no noticeable effect on my health. Here is a list of supplements that I think helped me.
Iron. I take a low dose iron supplement – only 5 mg. – daily. The brand of iron supplement that I use is Pur Absorb, but I’m guessing that other low-dose iron supplements will work equally well. Within just a couple days of starting taking the iron supplement, my energy levels increased dramatically. I could walk a mile without being exhausted afterward. In addition to improving my energy level, the iron supplement seems to make my muscles and tendons more supple and malleable. When my tendons are feeling tight, a dose of iron helps to loosen them up – within just a couple hours. Too much iron is really bad for you, so please be careful with supplementing it (ask your doctor, yada yada), but it helps me immensely.
Magnesium. I take 250 mg of chelated magnesium daily. I don’t necessarily notice that it makes me feel better, but I do notice that I feel worse when I don’t take it. My muscles twitch if I don’t take my mag.
Zinc. I take zinc when I get around to it. I remember feeling mildly better when I started taking it. It doesn’t seem to affect my health dramatically though.
Chlorophyll. I take chlorophyll about every other day. It seems to help with my energy level and mental functioning.
I also take fish oils, resveratrol, a probiotic, a joint supplement, CoEnzyme Q10, vitamin B12, chlorella, glucosamine, brewer’s yeast and some other supplements. They may help. I can’t say that I feel a difference using any of them.
- Meditate. Meditating has so many amazing, positive benefits for your brain, your life, your spirit, etc. that I can go on about it ad nauseam. Meditation helped relieve a lot of the mental symptoms of my fluoroquinolone toxicity. My anxiety, inability to concentrate, inability to connect with others, depression, loss of reading comprehension, decreased mental acuity, etc. were greatly reduced (or improved) through meditating. I meditate about 10 minutes each day. I should meditate more like 20-30 minutes a day.
Meditating helped me to gain compassion for myself and my situation. It also helped me to let go of the anger that I felt toward the pharmaceutical companies and the medical culture that allows fluoroquinolones to be on the market. The pharmaceutical companies and the medical culture are both messed up and blame of them is justified, but anger and blame were not serving me mentally, emotionally, spiritually or physically. I needed to let go of my anger and blame in order to move on with my life. Meditating helped with that.
I learned to meditate through taking a class called Mindfulness Based Stress Reduction that was offered by my health insurer. It was an excellent class based on the work of Jon Kabat-Zinn. Many Buddhism centers offer Mindfulness Based Stress Reduction or Meditation 101 classes.
- Get off the internet. Most of the information available on the internet about fluoroquinolone toxicity is horrifying. Fluoroquinolone toxicity is horrifying. It is scary. It is completely unacknowledged by the medical community – the doctors, nurses, etc. who we go to in order to make sense of things when our body goes hay-wire – so we seek answers on the internet. Unfortunately, most internet sites devoted to fluoroquinolone toxicity do not provide a balanced picture. They show the harm and the horror of fluoroquinolone poisoning, but they don’t show the healing and hope that most people eventually experience. I am writing and distributing this in order to provide the perspective of hope and healing. Some people are permanently disabled from fluoroquinolones. My heart goes out to those people and they have every right to scream their story on the internet. However, their story is not your story. My story is not your story either. But if you’re going to look to the internet for a prognosis, it’s better to find a hopeful prognosis than one that is full of doom and gloom.
When I participated in the online forums for Floxies, I noticed that my anxiety levels increased significantly. Even after I was 90% recovered and I thought I could handle it, my anxiety levels would go up simply by reading about people being floxed. Inducing anxiety is one of the worst things that someone suffering from fluoroquinolone toxicity should do. Anxiety makes all symptoms worse. I would slowly relapse and my symptoms would get worse every time I participated in the online forums.
Of course, the people participating in the online forums are seeking to help fellow Floxies, to commiserate and to participate in a support group. It is not their fault that my anxiety levels increased when viewing their sites and/or support groups. After all, most people on those sites are trying to be helpful and supportive. However, the net result of participating in the forums for Floxies is that my anxiety levels increased and my health declined while I was on those sites. I am healthier and happier not participating in the online “support groups” than I was while I did participate in those groups. Of course, this is my experience only. Many people find solace in the Floxie community and if it helps you, great!
The people who have worked hard to create a community of Floxies to support one another should be commended. It is because of their hard work that thousands of people have realized what is going on with their bodies and that they are not alone. The community of Floxies is full of wonderful people. However, you need to do what you need to do to take care of your health and if you find that hearing other people’s stories increases your anxiety levels, get off the internet. For you.
- Diet. I lost 11 pounds in 18 days when I first got floxed. My body was going hay-wire and it seemed like an allergic reaction. I had no idea what I could possibly be allergic to so I stopped eating almost everything. I didn’t eat sugar (including fruit), gluten, dairy, soy, anything non-kosher or anything spicy, or drink any alcohol or caffeine, for a month. I only ate vegetables and organic meat. It’s a highly effective way to lose weight, but I don’t think that restricting my diet severely helped me to heal. Restricting my diet gave me a sense of control, and that’s not a bad thing when your body is self-destructing, but I don’t think that it made me feel any better physically. After a month of only eating veggies and organic meat, I started to add normal foods into my diet. As soon as I started eating an appropriate number of calories, I started to feel better. Not only was I Floxed, I was also wasting away when I wasn’t eating normally. Getting enough food is an important part of healing. Of course, it’s generally good to be on the “don’t eat junk” diet, but I didn’t find that cutting my food intake significantly helped me to feel better.
Many Floxies develop GI problems. I was lucky in that I didn’t have many GI problems. Many people seem to be helped by cutting gluten, sugar and/or junk food out of their diet.
I notice that I feel slightly worse than normal when I consume sugar and/or caffeine. I think that most people do, I am just now accustomed to paying closer attention to my body.
The only food that makes me feel noticeably better is beets. For some reason, beets make me feel great. I just boil them and eat them.
I’ve heard good things about the benefits for Floxies of eating broccoli and other cruciferous vegetables. I love broccoli so I try to eat a lot of it. Unfortunately, I can’t say that I’ve noticed that it makes me feel better.
- Swim. My tendons and muscles feel significantly better when I’m in the water, and for several hours after I finish swimming. Swimming in the ocean feels especially therapeutic. There are so many minerals and trace nutrients in the ocean, I surmise that they’re helpful for healing. Unfortunately, I don’t live near the sea, so I swim in a pool. I feel better when I do so.
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Pilates. I started doing Pilates about 7 months post-floxing. Pilates strengthens the core, something that is generally important, and gently stretches muscles, tendons and ligaments, something that is particularly important for Floxies. I started slowly and gently and didn’t push my tendons, muscles or ligaments too much. I feel that gently stretching helped my tendons, muscles and ligaments to heal and return to (close to) their pre-floxing capacity. Take it easy though.
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Healing arts. I love to dance. I’m not a good dancer, but I love to do it. About 16 months post-floxing I started to dance again. Dance has been healing for me. I feel spiritual, strong and joyful when I dance. I’m not sure if it’s the dancing itself that I find to be healing, of if it’s the joy that I feel when I dance that is healing. Either way, it helps. I surmise that other forms of expression would have similar healing qualities. If you love to sing, sing. If you love to paint, paint. If you love to write, write.
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Attitude tips.
Try not to compare yourself to how you used to be. I used to hike 20 miles in a day. I can’t do that anymore, but I can hike 3 miles today and I couldn’t do that when I first got floxed. Compare yourself to how you were yesterday, not to how you were before you got floxed.
Do something – anything – to work toward healing, every day. Walk a little further than you did yesterday. Meditate. Take an Epsom Salt bath. Get an acupuncture treatment. Do a puzzle. Whatever makes you feel good – do it. Every little step helps.
Don’t kill yourself. Have hope. You will get better.
You’re not crazy. You’re sick. Have hope. You will get better.
You’re not stupid. You’re sick. Have hope. You will get better.
Try not to identify yourself as sick. The mind is a powerful thing so try to stay positive. It’s hard, I know. But try, because it’s worth it.
You will have bad days. They will pass. This all will pass. It is not permanent. You are strong – present tense. You were knocked down, but you weren’t killed. You will get better.
Don’t quit your job. Try to maintain as much normalcy in your life as you can.
It is not your fault. Even if you knew better, even if you demanded the most powerful drug possible from your doctor, even if you self-medicated, even if you coerced your doctor into giving you the fluoroquinolone antibiotic, even if the infection that you were treating was something that you got because of doing something stupid, or from sex, even if you continued to take it after you started to get sick, even if you floxed your child/parent or other loved one – IT IS NOT YOUR FAULT. You are sick. You are poisoned. You are not to blame for your sickness or for the fact that you are poisoned. Who to blame is a discussion that I don’t want to get into because I want this to be positive, but it is not you. You are not to blame. You are a victim. It is not your fault.
Lisa’s Life now
Life is good. I don’t consider myself to be sick any more. I’m not quite up to my pre-floxing capacity in a couple of areas. I don’t have the endurance, energy, strength or flexibility that I used to. However, I’m pretty close to my pre-floxing capacity in those, and other, areas. I’m about 99% better. Not being capable of intense exercise since December, 2011 has left me a bit out of shape, but I’m working toward being able to exercise intensely again and my stamina, strength, energy, etc. are increasing. I can’t hike 15 miles with a backpack on quite yet (something I could do before I was floxed), but I am capable of most physical and mental activities that would put me in the “normal” or “not sick” categories.
I can work full-time. I am grateful for the fact that I have a job that is not too demanding physically or mentally because I was able to hold onto it through my worst times. My boss and coworkers were wonderfully understanding and they claim not to have noticed that I couldn’t think straight for about a year. I even got a promotion about a year post-floxing!
I can do Pilates 4 times a week, swim 2 times a week, dance once a week and walk daily.
When I was unable to walk a block I told myself that I would consider myself to be “better” when I could dance all night in heels (my feet hurt like hell when I was sick), I can do that now. I never liked high heels, but I can wear them now.
My memory isn’t quite what it used to be, but it’s good enough to do well at my job and to maintain my relationships.
In many ways, I’m a different person than I was before I got floxed. This has been perplexing for me and my loved ones, but it’s not an altogether negative thing. I’m a much more spiritual person than I was before I got sick. I was a pretty firm Atheist before I was floxed. Now, through meditation, dancing, believing in alternative therapies that focus on energy, etc., I’m finding some spiritual outlets that I didn’t have, need or want in the past.
I have become a more compassionate and patient person. I now empathize with people who have mystery diseases. I used to have the attitude that I now find so frustrating in medical professionals – that if there isn’t a way to diagnose or treat an ailment, it doesn’t exist. Now I know that people are genuinely suffering and that there is a real cause for their pain – regardless of whether or not it is acknowledged by the medical community. My heart goes out to those in pain.
I had to become more compassionate and patient with myself as well.
I like some things that I didn’t like before I was floxed and I don’t like some things that I used to like a lot. I hated swimming for the first 32 years of my life. Now I love it and consider it to be an important aspect of my healing. I used to like working out in an intense way that got me dripping with sweat. Now I like to do exercises like Pilates that are focused, slow and deliberate. I used to love hiking, camping and backpacking. I miss loving those things so I’m going to try to get back into them, but I’m not sure that they’re my passions any more. Drinking used to be one of my favorite pastimes. My tolerance for alcohol is shot now and I don’t really enjoy it any more. I missed it for a while even though I knew that it was for the best that I wasn’t drinking like a fish. My appetite has changed as well. I used to be able to eat a lot of food and I loved to eat. I still eat, of course, but I don’t eat as much as I used to and I don’t eat with as much gusto. This is probably a good thing seeing as I’m not into exercising intensely any longer.
Even though I would do just about anything to turn back time and not take Cipro, the place that I am in life isn’t bad, and I probably would be someplace different if I hadn’t gotten sick. It sucks that I had to gain empathy for people who suffer from pain, mystery ailments and debilitating fatigue, but it’s probably a good thing that I now have more empathy. I would like to think that I’m a better person from going through this. I’m not a stronger person, but maybe I am a better person.
I hope that my tips and words of advice are welcome and helpful. Please feel free to contact me if you have any questions or concerns.
** The story above is truthful, accurate and told to the best of the ability of the writer. It is not intended as medical advice. No person who submits his or her story, nor the people associated with Floxie Hope, diagnoses or treats any illness. The story above should not be substituted for professionally provided medical advice. Please consult your doctor before trying anything that has been mentioned in this story, or in any other story on this site. Please also note that people have varying responses to the treatments mentioned in each story. What helps one person may not help, and may even hurt, another person. It is important that you understand that supplements, IVs, essential oils, and all other treatments, effect people differently depending on the millions of variables that make each of us unique. Please use appropriate caution and prudence, and get professional medical advice.
I am curious about supplementing just GABA. If you increase your Gaba levels to help with downregulated receptors, will that continue to cause the receptors to downregulate?
Also from what I have read, FQ’s cause a blockade of the FQ receptor, thus increasing decreasing GABA reception. Wouldn’t this cause an increase of GABA receptors to try and compensate for the decrease in GABA?
Dr. Whitcomb told me directly supplementing GABA is contraindicated. I’ve also read it’s not very bio available anyway, so it’s either counterproductive or useless. But nutritional support to make sure you have enough GABA is ok. Taurine is one precursor of GABA that’s in the CalmPRT I take. I was worried about even taking that, but he assured me my body wouldn’t make GABA it doesn’t need, so it’s safe to take the taurine.
Has any one taken a antibiotic after being floxed I am 14 month out and fighting a infection from surgery they have let me fight it for 2 month but have given me bactrim just sitting here looking at the bottle both my reg doc and natural path are on board but just freaked out . I no one can give med advise but looking for any kind of advise any one my have or has had to take antibiotic after being floxed .
Hi Ruth! Crazy that taurine is suggested as that is something in energy drinks that I have always heard is “bad.” I am learning so much from you!
Hi John,
I have had to take antibiotics since being floxed (of course, nothing in the FQ family!) and it has been okay. Usually when you are taking antibiotics it is because you have an infection or something, so it becomes hard to separate med side effects from the symptoms of the infection. I have been on Bactrium (the generic is Sulfameth Trimithoprim – spelling?) and that one works fine for me. But everyone is, of course, very different. Also, just throwing it out there bc I have a friend with lupus.. Do not take Bactrium if you have that autoimmune disease!
It was enouraging to read your story as I am a newly floxed person having been prescribed it without even a face to face consultation with my doctor. I took 3 x 500g and then stopped it myself and made an appt to see my doctor who flippantly told me to ‘stop the course’. I thought I was going crazy, I cannot stand for longer than 5 minutes or so and the pain in my back and sides is constant, I am getting night sweats, headaches, pains in my arms and upper shoulders not to mention a feeling of fuzziness and confusion in my head. This drug is evil and I think a real campaign to get this banned should be started somehow, hoping I can get back to work as I have just started my new job 🙁
So true. We just saved a puppy Australian Cattle Dog. He was less than 1 hour away from being put down. We found a new home in California for him and are his foster humans for a week until he gets his new humans. Feels good to help. 🙂 so many acd’s get put down since they are a unique breed and require experienced owners that can give them the structure they need.
Thanks so much, Lisa! That quote is beautiful!!! I have it entered into my phone so I can look at it everyday 🙂 So powerful. I thank you for all your support, as always.
As for the Lotemax, it is basically a “neccesity.” I had these eye issues well before I took the FQs. Although, I did request a print-out of my medications from Walgreens from the last 10 years and, while I cannot remember if I took it or not, I was prescribed Levaquin like 8 years ago. It makes me wonder if it caused damage even all those years ago. It is just crazy to me that these drugs are prescribed so frequently when they are so dangerous!!
Have a great day Lisa. Thanks again!
Oh and Ruth – I emailed you directly. Thanks to you both!! 🙂
I took Avelox prescribed by Dr Chlysta for H. Pylori infection on May 1, 2014. Avelox is a fluroquinone antibiotic. I became sad, anxious and I heard singing, chanting and wailing. It is now June 19, 2014 and I continue to have the symptoms.
I was asked to see a psychiatrist who prescribed Risperidone 0.5 mg. I couldn’t take that either as it made me have a bad headache, numbness and feverish. Dr. Chlysta then prescribed Olanzapine 2.5 mg, but a pharmacist suggested that I should see a different doctor. He said that Olanzapine is a different drug but belongs in the same family.
Dr. Sturmwind prescribed Sunthroid 0.5 mcg, but after taking it for four days, Dr. Chlysta told me to stop it. I was prescribed Synthroid because my TSH levels were high. She thought I might have an autoimmune disease, but my appointment with the endocrinologist will not be until June 23, 2014. I am going through a frightening experience.
Based on timeline, I think Avelox caused the toxicity, However, hypothyroidism if left untreated can also cause auditory hallucination.
I am not a doctor, but if I am unable to take Risperidone 0.5 mg, Dr. Chlysta should not have prescribed Olanzapine 2.5 mg. I feel she is doing more harm than good.
Lisa, thank you so much for sharing your story and your recovery progress! It gives me a gleam of hope. I was floxed on April 21st, 2014. I took 3x 400mg pills of Avelox (Moxifloxacin HCL) and 2 hours after my 3rd dose, I was sitting quietly on the couch watching tv and I got up abruptly in a panic and ran outside. My whole body was shaking, especially my legs and I was having crazy heart palpitations and dizziness. I felt like I was losing my mind. I was having a panic attack. I had panic attacks non-stop for 4-5 days/nights then they started coming on a few times a day. I could not go outside without getting panic attacks so I became agoraphobic.
It’s been almost 2 months and it seems that my body is getting worse instead of better but that is my fault. On may 23rd, 2014 I was taken to a psychiatrist who told me I had panic disorder and had to be on 10mg of Prozac. I stupidly believed him because my sister has been suffering from that disorder since the age of 7, although I had never had a panic attack before. I figured it was genetic. He also gave me clonazepam (a benzo) and told me to take it whenever I was anxious. Luckily, I barely took the benzo; I would take 1/4 of a pill or 1/2 max (0.125-0.25mg) every few days for about 1 month. While on Prozac (which I didn’t know contains fluoride), my physical and mental symptoms got way worse. I stopped the both Prozac and the benzos 8 days ago and my body has never hurt so much.
I have the following symptoms:
– brain fog
– loss of memory
– The dequervain’s tenosynovitis that had healed in my right hand came back not even 1 week after I stopped Avelox. I have been splinting it for almost 4 weeks and it has not improved. This may be due to the fact that i was stupid and used a topical NSAID (voltaren).
– I have intense burning pain in most of my joints, especially my shoulders, left elbow, wrist and hand.
– Loss of muscle strength/weakness in my legs and arms. I actually feel like they shake.
– High anxiety with panic attacks and agoraphobia (i refuse to take further drugs)
– Insomnia – Trouble falling asleep and can’t stay asleep when i do for more than 30-45 mins.
– dry mouth and bad breath
– Tight neck & back causing intense pain.
– I get some occasional numbness in my left hand or feet.
– Popping/cracking of all joints
I have never been so afraid in my entire life!! I am so afraid that all this is permanent. I am in constant pain and i’m only 33!! The worst part is that I was given the antibiotics for a sinus infection that in the end I didn’t have. Before being floxed, I was a healthy (other than life-time asthma) powerlifter that lifted heavy weights 5 days a week. Now, I can barely brush my teeth and wash myself because of the pain. I just hope that this is temporary….!!
About 1 week ago I started taking supplements: B-complex, osteo-biflex (glucosamine/chondroitin/MSM), omega-3s, Magnesium citrate, probiotic, melatonin to sleep. My boyfriend is buying me hydrolyzed collagen today, which he read will help. I was thinking of taking 5-HTP and L-Theanine for anxiety but i’m not certain. What other supplements can i take to help??
I also have other symptoms but the list is so long that I figured I would cut it short but here are a few more: Dizziness, brain zaps, pain in my abdomen like butterflies, racing heart for no reason, I get scared/anxiety from everything (loud noises, watching tv, the doorbell, etc…everything), burning eyes and scalp.
Sara,
Hang in there, it gets better. Although you might not fully heal for several months to even a couple of years, things probably won’t stay as bad as they are right now. They also could get quite a bit better overnight. Sometimes we think only of all the awful things that could happen, but you read a lot of stories wherein people’s symptoms (as bad as yours or worse) went away abruptly.
This is not your fault. Not it happening in the first place, not your taking things that might have made it worse. That’s a pretty low dose of Benzo’s, it probably won’t delay your recovery by that much. People on here and other sites have taken a lot more of them and still recovered within several months time. I wouldn’t worry about the Prozac. 10 mg is a very, very tiny dose of that also and the fluoride that’s in there isn’t what’s causing your symptoms. Fluoride is a problem for your thyroid because your thyroid prefers to use it instead of iodine to make T3 and T4. Yes, avoid it if you can, but FQ’s do their damage in other ways than fluoride poisoning.
First they chelate magnesium from your tissues. Secondly they can bind to GABA receptors causing similar symptoms to Benzo withdrawal. Thirdly, they damage your DNA. However, most people can tolerate some of this damage and your body can usually repair it. Chances are your DNA is no more damaged than if you’d smoked a couple packs of cigarettes, so don’t freak out. Both the chelation of magnesium and the damage to DNA lead to oxidative stress so you need some good antioxidants as well as magnesium supplements. I enjoy magnesium oil/lotion and Epsom salt baths. You can get magnesium right through your skin, and it makes you feel a lot better. Sometimes I tolerate it better that way than through supplements.
I have had similar symptoms to yours (still having some of them) but things are to a point now (at just four months out) where I can live my life.
Here’s what worked wonders for me:
Idebenone (CoQ1): Probably the best antioxidant in the world and also helps your body to use tryptophan better to make serotonin. The bottle says it supports healthy brain chemistry. It cut the anxiety to the point that I could work. I take 50 mg 3x a day: with breakfast, lunch and dinner. It is fat soluble, so better to take it with food.
L-Theanine: (not D-Theanine) 200 mg 3x a day without food. It really helps me with sleep. It blocks glutamate and raises dopamine and serotonin.
CalmPRT by a company called NeuroScience: I take up to six pills a day. It has Rhodiola Rosea in it, which is an adaptagen. It can help the body adapt to anything. Athletes use it to adapt to hard workouts. They must take it after they work out. To me CalmPRT is procrastination in a pill. Hard to get anything done on it, but my symptoms don’t bother me as much. There are some other good things in that supplement as well. For some people it raises BP, but it helped control mine. It blocks adrenalin.
I hope those things help. Another antioxidant you might want to try is NAC (Aceytl Cysteine)– it’s great for clearing up a big mess in your body and you don’t need to take it for very many days. They use it for Tylenol overdose. You can get it over the counter and it’s cheap. It gave me a rash after two weeks, but by two weeks it had done its thing and I felt a lot better.
Good luck and hang in there. Time is on your side and sometimes symptoms cycle where you feel worse right before you get a little bit better.
Ruth
Sara,
Forgive me for being so long winded, I just feel so bad for you.
Try deep, chest expanding breaths. These should reduce your symptoms. Right now your sympathetic nervous system is on overdrive. Deep diaphragm breaths activate your parasympathetic nervous system (rest and digest) and should calm things down. Singing or playing the flute helps me tremendously.
Nothing your body is doing during a panic attack is really going to harm you. It’s all normal stuff, just on overdrive. Your heart might pound if you were running to catch a bus– or jumping out of the way of one! It’s just that now it does it for no apparent reason. But it’s normal stuff. Your body is just reacting to the loss of GABA receptors.
Classical music (Mozart or Beethoven) helps me with sleep. Especially Beethoven. He was poisoned too. Although he had some congenital abnormalities that probably would have affected his hearing regardless, he also had 100 times the normal amount of lead in his body. He not only went deaf, he suffered a lot of horrible symptoms of lead poisoning through most of his adult life. Yet, he produced such incredible music. Relaxing and listening to it and reflecting that Beethoven said that if anyone felt the odds were against them, that they could not succeed, they should look at him, and all he accomplished despite his deafness really helps me.
I know Lisa will tell you that although some people are horribly damaged by FQ’s and cannot recover, this is a VERY small percentage. Most people get better with time. You lost some magnesium, you lost some GABA receptors, you have some damaged cells. Give your body what it needs to recover and give it time and it will do it.
Ruth
Ruth,
You are a sweetheart and a ray of sunshine! 🙂 Thank you so much for your kindness, your support, all your knowledge and advice! This has been a very difficult time for me and you along with Lisa’s story has given me hope.
I will definitely be purchasing L-Theanine for anxiety. I want to also try the Idebenone and the Rhobiola Rosea (that is in calmPRT) but honestly the cost of all the supplements that I have purchased is so high and I’m spending my day taking pills…. sooo many pills! So I will try one anxiety supplement at a time and hope one can help me get out of this house!
For me, the psychological damage has been even greater than the physical damage. My heart will race or palpitate out of the blue, even when i’m sleeping, just waking up or calmly watching tv. I have never felt this insane in my entire life. I also feel I would be dealing with the physical symptoms better if I could get some sleep and stop having an anxiety level of 11 all day! I want to be able to go to the store when I feel like it, go see my friends, drive the car. I want my life back; my routines! I’ve decided to go get some cognitive behavioural therapy for the panic attacks/anxiety. The only problem is i have to figure out how to get there since I don’t drive anymore.
I started to meditate 15-20 mins daily about 5 days ago but that has not helped me yet. I will continue daily and hope that eventually my mind will calm down. I will eventually add yoga in when I am feeling better physically. I will try some classical music too before bed. I actually listen to some meditation music before bed. Maybe I should try to keep my earphones on while I fall asleep. The thing is I usually don’t have trouble falling asleep; it’s staying asleep that is an issue. I have tried melatonin for the past 3 days but it has not worked and i have been having trouble also falling asleep.
How are you feeling these days?
Just a up date have been taking bactrim antibiotic for 10 days now and had no side effect . Seems to be clearing up my infection to . The sad part was I had to call my mother to talk me threw taking the first pill and whent to doc office to take it and hunge out there for a while to make sure I had no reaction . And I am a 42 year old 6 foot 220 pound man that all most had a nerves brake down taking the first pill . Last week I had a bear clime in to a tree stand and was less then 6 in from me I was more scared taking a pill
I know how you feel. I could fall asleep next to 2000HP fracking pumps pushing 4500 gallons a minute at 10,000 PSI. Now I freak out taking a supplement…… It’s like PTSD.
Yes, Ruth, it hosed me up pretty bad. I really hate the cycling. I was doing Lots’ better about a month ago, it’s been downhill since. Some things are better, like my tinnitus and joints are not as bad, but brain fog has kicked up, and my gi system has locked up. Just wish I could pin down what aggravates symptoms.
Hi Ruth. Does Dr. W think the cns symptoms will go with time? Between the recent MS diagnosis (I do have lesions on my brain, but even my neuro thinks much of what I am experiencing is both ms and flox symptoms), the floxing (I was on cirpo and levaquin [not at the same time] for 20 [!!!] days last August) and now the benzo withdrawal (I have been off for almost 2 weeks), I feel like I am going crazy. I don’t know what’s what anymore. My legs are swelling terribly. They look so bad.They feel like they are on fire. They are also incredibly discolored, has anyone experienced that?
Thanks so much. Let’s get together sometime, Ruth!!
Lindsey . My legs turned black for about 2 month and went numb docs could not figger out why the only thing I found that help was magnesium .coconut water and Acupuncture . The biggest thing was Time . Your mine will also return . I am 14 month out and doing much better .
Hi y’all ! I’m Jill from Dallas. I took cipro 6 weeks ago and now have cipro tendonitis . I cannot thank you all enough for all your information. I’ve been taking pqq and magnesium. The Doctors tell me NOTHING! Does anyone have any thoughts on Cryo therapy ,I’ve started it to reduce inflammation. Also for any of you that have peripheral neuropathy due to cipro there is a new lawsuit starting up at Baron and Budd law firm in Dallas.