*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 take 10 mg PQQ, 50 mg Idebenone and the two MitoQ pills (I think that’s just 5 mg because it’s so targeted to the mitochondria) in the morning. I take another Idebenone at noon and one at about five. I was taking a second PQQ in the evening, but I decided just to take it once per day. Human studies with PQQ were 10-20 mg. With Idebenone had some people taking six 45 mg pills a day. I take three because it absolutely cancels out my anxiety. I skipped my afternoon dose once and then had nightmares. Idebenone raises serotonin by helping you use tryptophan better to build serotonin. If you don’t need the serotonin boost it will cause insomnia and anxiety, kind of like the side effects some people get from Prozac. I have had depression in the past, so Idebenone is a godsend for me.
I found a research study in which MitoQ and CoQ1 (Idebenone) prevented damage to tendons from oxidative distress caused by an FQ. It is also proven that those antioxidants can destroy abnormal, damaged cells so they don’t keep replicating more damaged cells. They do not stimulate the growth of new healthy cells. PQQ has been shown to stimulate biogenesis if new mitochondria in aging cells, so that’s why I added it.
I was floxed by being given a 30 day run of cipro at 750mgs x day lus 100mgs of doxy along with that last june. Been feeling off ever since. My biggest issues is my sleep being way off…vivid strange dreams…waking up unrested. Also just feel like things have been dulled. I was also given avalox in January prior to the cipro.
Doctor’s will cover each other or at least their own a** if you mention negative drug reactions. I don’t really think any of these types of drug’s are safe.
Ruth, starting Floxiepets has been on my to-do list for a while. I need to get it done. Maybe this weekend.
I am having a relapse, my third one, and it is a mystery to me. Previously, I had supplemented magnesium heavily and actually got to the point that my blood level was high normal. I was in the ER thinking I was having a stroke and they told me that. (I still had and probably have magnesium deficiency in the cells affected by the chelating effect of the Cipro.) But magnesium was making me feel worse and it’s not advisable to supplement when your blood levels are high. I didn’t start with the supplements again in time– I honestly thought I was better. I felt better. Then suddenly my magnesium levels would drop and I’d have all my initial symptoms again. But this time I had just reached the point where I should pull back on supplementing magnesium– it made my blood pressure go up and made me uncomfortable to take it yesterday afternoon. So I didn’t take it, felt better, and I figured I was fine for awhile. But last night every time I tried to sleep my ears rang, my ankles tightened and I got a panic attack– all symptoms that would seem to indicate low magnesium, but I tried a quarter of a pill and I could tell my body didn’t want it. My teeth aren’t loose– usually that’s a sign I need to take some mag. I thought the whole key to this was magnesium deficiency, but I have been diligent with supplementing, getting steadily better since my last relapse. For no reason I now can’t sleep, am getting increased “fight or flight” response to any stimulation and in addition to that my entire bod feels like it is burning, but it doesn’t look red, but it feels like I have a rash. I am so very discouraged. I have to play organ for Good Friday and Easter and I’m wondering how I will manage. Will I just cycle like this every three weeks no matter what I do? I just had a spectro cell test done and it was great in almost every area. I should be healthier than I’ve ever been, but I’m barely functional. Today I was able to walk slowly in my yard without pain for a half an hour. But last night I didn’t sleep at all. I went from almost completely normal to debilitated in a matter of hours and I can’t figure out why. I have never felt that I didn’t need magnesium (no tendon pain or leg cramps) and then had the insomnia, tinnitus and cramping that same night. If these symptoms aren’t caused by low mag, then what is causing them?
I’m three months out and seem to have a 2-3 week cycle of partial relapses, the “Traveling Circus” I call it. I seem to cut back on my supplements and overdo thinking I’ve finally made it up the mountain, then get kicked back down. Besides being floxed I have PsA and Asthma so some symptoms overlap. I’m 68 and was given Levaquin for infection and took 4 pills before getting decked. I’ve learned a lot from you all and have improved a lot.
This week my sternum became severely inflamed but with no shortage of breath, just painful to breathe. I have never had an asthma attack but inflammation often with dust and chemicals and use Symbicort 2X day and Singulair 1X day for years with no problem. My doctor was able to see me on short notice Thursday, ruled out the heart flutter with EKG and sent me off for an X-ray. The crushing pain wouldn’t abate until I took 10mg of prednisone 1X day that I’d had taken last year. I have taken it 3 times now to get me through the weekend and am back on my mag and other supplements like a good girl. I rationalized it was better to take the steroid than go to ER and let them experiment with me. I’m curious about others who have asthma and have flox issues and if it may be Costochrondritis instead. I get a few shooting pains in shins and feet but no full-on flox symptoms. I’m very confused and laying very low this beautiful spring day.
Thanks Lisa and Friend,
The X-ray came back normal and now I’m waiting to see if my pulmonologist can squeeze me in this week. He doesn’t know about the Floxing yet so it will be another Merry Go Round since he gives out samples of Avelox, which I took once a year ago with no side effects. I have an odd cough but no real shortness of breath, so I thought maybe it’s Costochrondritis (inflammation of cartilage of sternum). My GP says to stay on the prednisone until then and you know how much fun prednisone is. 🙁
I’ll ask him about ALA and hope he understands and can help me. I’ll let you know how it goes. I REALLY appreciate your help. It’s not as lonely a road with you guys on it with me.
I was really disappointed in my doctor today, he disagrees that the antibiotic can cause any of my problems. Guess I’ll be looking for a new pulmonologist. In the meantime I found ALA at my health food store and will be on prednisone until just before I get an appointment. I’m not waiting for his direction with the ALA. I’ll start out on a low dosage and see if I have any problem. Do you know how long prednisone takes to wind down after you stop taking it?
Thanks again.
Yes, It should be illegal. Of course, they avoid a lawsuit this way. The worst affliction now is my memory which my family and I are quite concerned. I hope I will have a memory at all by the time my third year, post-floxing, is over.
Thanks Lisa. I found out I don’t have to go off prednisone before I see the pulmonologist. Also I got in earlier – next Tuesday – AND my husband is going with me. No one knows more than he does about what I’ve been going through and will support me in getting to the next base with the doctor if possible. You’re spot on about how it feels to have someone you have trusted not believe you. I’ve printed out some info for him just in case I’m too nervous to tell him all my symptoms and explain what I’ve been going through. He is the last doctor in my pod of care and I haven’t contacted him before now because I didn’t need to. Plus it’s been difficult to explain when your mind is on survival. The rheumatologist I see expressed her sympathies and told me she has also never treated anyone with this problem, that I probably know more about it that she does. Yippie! Now I understand more what people are going through with trying to get help and support. What you’re doing is more than important to us, you’re playing an essential part in our well-being. Thank you.
I am committed to my health and well-being, just as I’ve been committed since my illness to finding a replacement for my position at work, training him, and keeping things going in my lop-sided way part-time and disabled – mostly from home. It’s been difficult but it’s also kept me focused on the “next thing” and helped me not slide too far down the rabbit hole of CNS symptoms. The 8 men I’ve worked with for 20 years are supporting me by making this transition work in ways I truly appreciate. They believe me because they know me, one brought me “holy water” from a pristine well today. It hurts about the doctors because they have some power over me medically but not in ways that can defeat my spirit and my will.
I also found out that it takes about 24 hours for prednisone to leave the body, a little more or less depending on weight and age, probably 48 hours for me. 🙂 The internet is a wonderful tool if you know the right questions.
Thanks again, and bless all your little hopeful floxie hearts.
ps: you can visit my art website @ http://www.melindarambo.com if you’d like to.
predisone
if you are on say 50 mgs a day for 5 or 7 days then you cut that in half for the same time period to 25 mg a day
then to 12.5 mgs by breaking the tablet in half again for the 5 or 7 days
then 5 mgs a day for 2 weeks
also take them in the morning not at night as they may keep you awake
they also have side effects
sometimes you may get very happy then when you go off you are crying all the time
or else you just want to eat
also it does not always fix the problem you need it to that time you take it
someone posted on your page that predisone is in your body for up to24 hrs after you take it
I think that is wrong I think it is about 6 weeks
I have been taking it for a long time due to breathing problems and I know the effect is for at least 6 weeks after you have gone off it
don’t forget it also causes broken bones as the bones calcify
Lisa, I posted a couple of weeks ago but couldn’t find a response so sorry for the repost! I had asked about the muscle twitching and if this is something that eventually resolves? I have pain in my quads and terrible muscle twitching (four months after taking 5 days of levaquin) . I also have several other symptoms,including anxiety, but the paiun and twitching are the worst! My homeopathic Dr. thinks the levaquin could have “woken up” the mercury in my body. Have you heard of that? I see you said your muscles twitch if you don’t take Mag. Does that mean no twitching if you take Mag?? How long did they twitch? It is driving me crazy and I get so worried it will never go away and my legs won’t be “quiet” ever again!! Thank you so much for the reply!! I really miss my old life of fun, eating, a glass of wine, etc. etc. Your site gives me hope- although 2 years feels like an eternity right now:)
when you get time try and read Rachel carson book silent spring it was written about 40 plus years ago and really interesting as it was what scientists were doing to the environment
one part I will never forget the men who went duck shooting did not alike all the mosquitoes so they had them sprayed
the next year they came back and hardly any ducks as the fish ate the mosqitoes and the ducks ate the fish and all were poisoned
its a really interesting book just hard to get
have a great day
sue
I recently found out FQ’s bind to GABA receptors, causing your body to pull back on those receptors, thinking you have an excess of GABA. This is what happens with Benzodiazepines. Withdrawal from Benzo’s is long and painful and the symptoms match what many poisoned by FQ’s suffer. Google Benzo withdrawal and you will find all your symptoms there. Read comments at Benzo Buddies and it will sound so very familiar.
First FQ’s chelate magnesium causing a profound loss of functional magnesium and throwing your body into severe oxidative distress. But later you notice the other problem– the damage to your CNS. It’s very slow to heal and the symptoms can cycle over several months to five years or more. However, most people do see nearly 100% resolution of all symptoms in several months to about two years from the damage done to GABA receptors by Benzo’s. It follows that the recovery of a floxie will follow a similar pattern. But do make sure you are not still magnesium deficient, as that can also cause muscle pain and twitching.
Thanks for the tip. I had a Spectro test done and everything was great– either normal or better than average– except my insulin glucose reaction, which was just on the line between deficient and normal. That’s because I’m fat. I was on track to becoming a type II diabetic. Having been floxed I had to swear off all sugar and junk food, and I’ve been losing weight steadily, despite eating all I want, but only healthy food.
I can feel that my blood levels of magnesium, calcium and zinc are back in balance because I can exercise again, my legs don’t hurt from prolonged standing, my BP is lower and more stable… But if I don’t take at least 600 mg of magnesium a day my teeth wiggle loose periodically during the day, but then tighten up after having food with magnesium in it or taking a supplement. My spectro cell test said magnesium was fine in my cells– but not all my cells, obviously. The places magnesium was chelated out of still don’t hold normal reserves of it.
My symptoms now are mainly due to down regulation of GABA receptors. Everything happening feels like Benzo withdrawal, but like Benzo withdrawal the symptoms cycle, giving me windows of normalcy. When my symptoms really flare though it seems like my body simultaneously burns through a ton of magnesium (stress) but doesn’t want to tolerate magnesium supplements, although I still need to work at replenishing normal reserves of magnesium. People withdrawing from Benzo’s are advised to supplement magnesium, but some say their CNS won’t tolerate the supplements– probably because magnesium relaxes you and without normal GABA receptors you have times during which you cannot relax. This makes Cipro a true devil’s drug, both creating a dangerous defect of functional magnesium through chelation of magnesium and then duplicating a situation in which the body simultaneously needs extra magnesium but doesn’t tolerate it well.
All I can say is that I’ve been very, very lucky so far, to have only minor damage to one tendon and to be able to sleep at lesst a little most nights. I’ve been seeing decreases in my anxiety levels and deceased stress responses of my body to normal stimuli, and an ability to better tolerate stimulation. I still am getting tinnitus, burning skin and tightening muscles in my ankles when I relax. When I’m up and active those things pretty much go away. As it stands right now I can more or less live my life, and that’s at less than three months out. I also know it could get worse before it gets better and I fully expect more horrible nights and days where I can just barely drag myself around. For most people it ends at some point, even people who actually took a Benzo. I never did, though my doctor pressured me to take Lorazepam adter I was floxed, just as she pressured me to take the Cipro when I didn’t want to. I found a new doctor.
When people say they gave up all sugar does that mean fresh organic fruit as well? I am very thin naturally and have lost ten pounds since Jan. As I have cut out all processed food but still love fresh fruit! What about organic honey or organic cane sugar? What is reasoning for cutting out sugar in general? Inflammation? Does this mean we can never eat sugar again or just during recovery??
Oh my God, I am so grateful for this post and thread. I am so happy I decided to go with the Google search result “‘treating’ cipro nerve damage”, vs. just “cipro nerve damage” which would have probably yielded the ‘scarier’ results. In December of 2012 I had some mercury fillings removed from my mouth by a qualified I.A.O.M.T. dentist who specialized in the safe removal of these fillings. Right away, I felt AMAZING — a long standing numbness/weakness in my right cheek, lip and eye area resolved, and a long standing problem with hair loss resolved over night. It was truly incredible. One week later, I began to develop lower back pain and a urinary tract infection even while taking d-mannose and cranberry. It just wasn’t knocking it out, so I went to the doctor, and he prescribed Cipro. Right away, I became extremely dizzy, fatigued, (sleeping 12 hours per night), excessively sweating, anxiety, experienced a return of the facial nerve weakness on the right side, weakness in my left hand, and extreme hair loss and hair shedding. I figured these symptoms would be temporary, and I didn’t want to develop a kidney infection which I have had in the past, so I took it for the full 10 days, still with no relief of symptoms. My doctor did another re-test of my urine which got lost, and since he wasn’t sure of the result, gave me another round of Cipro. I took the second round, concerned about the kidney and back pain that was not subsiding. After the 2nd round of Cipro, the UTI symptoms still hadn’t abated, so they gave me Macrobid. After the 3rd round of antibiotics, my UTI symptoms still hadn’t gone away, and when my doctor tested my urine and it was clean!!! A that point, he sent me to a urologist who explained that I did NOT have a bladder infection, I was suffering from cystitis which is an inflammation of the urethra and bladder, not an actual infection (in retrospect, I believe this was possibly irritated from excess mercury exiting my system). Well, the end result were going through 3 rounds of antibiotics unnecessarily, and being left with residual symptoms that have not gone away 18 months later. After going through a gut repair diet of mostly organic meat and vegetables, and taking some supplements like L-glutamine (which does increase GABA by the way), I felt 80% better. I have had to avoid gluten, dairy, soy, eggs, beans, nuts, and super sweet fruits for the time being, which I’m fine with if it’s short term. I am now 2 1/2 months into the gut repair diet, feeling so much better, and I have so much more energy, but still no relief of the facial nerve issue, or hair shedding. Since the facial nerve got worse after I took Cipro, I decided to do a search on Cipro and nerve damage, and so glad I did. I was taking supplemental magnesium, but only occasionally, and taking B vitamins, but not the methylated kind. I am also going to try TMG, acupuncture, L-theanine, sudoku puzzles (good for the left brain and I have right-sided complaints) and some of the other suggestions if I don’t find these helpful. I do take coconut oil and meditate daily which has helped so much, and I will try beets as well! It’s reassuring to me that people to experience relief even if it is sometimes 2-5 years after the fact. I am so much healthier than I was in so many ways, and for that I am extremely grateful. BTW now, when I feel a UTI coming on which is very rare now that I am healthier, I take d-mannose and cranberry with excellent results, and will NEVER take antibiotics for this condition again!!!
im in Sydney Australia
sue
Mini Lee is Sue? welcome back 🙂