*The following is an individual’s story of surviving fluoroquinolone toxicity. It is not medical advice. Please see the disclaimer at the bottom of the story. Thank you, and please be cautious with all treatments.
Lisa’s Story
In the middle of November, 2011, I took Cipro to treat a urinary tract infection. I took 2 pills (500 mg each, I believe) a day for three days. I didn’t feel like the infection was gone, so I went back to the doctor and requested more antibiotics. He gave me macrobid and the infection subsided within a couple of days. Life went on as normal for the next couple of weeks, until December 2, 2011, at which time I got my period and started taking ibuprofen to help me to deal with the cramps.
Before I continue with my story, I would like to note that I had taken Cipro to treat a urinary tract infection approximately a year earlier. I had no notable side effects at that time. Though, looking back on things, I did develop an eyelid twitch at that time and some strange stomach cramping that came and went started then. I didn’t think anything of the eyelid twitching or the stomach cramps. I certainly didn’t think that they were tied to the Cipro. I took ibuprofen regularly after taking Cipro with no adverse effects.
On December 2, 2011 my legs started to itch. On December 4th I broke out in hives all over my body. I went to the doctor and was told to take Benadryl. I took more Benadryl than the box recommends and my hives got progressively worse. On December 5th my feet and hands swelled to the point that I couldn’t use them anymore. It was painful to walk, or even to just stand. I went back to the doctor and was put on prednisone. The prednisone suppressed the swelling and calmed the hives a bit. On December 7th my left leg went weak. For the next few weeks the following symptoms got worse and worse:
- Weakness in my legs. I could barely walk. The steps that I could take took a tremendous amount of effort and energy. I couldn’t stand for more than a minute. I had to drag a chair into the kitchen in order to cook rice because I couldn’t stand to stir the pot.
- Tightness of the tendons in my legs. I had inflammation, and possibly tears, in most of the tendons in my legs and feet. My hips, knees and ankles, to simplify things, didn’t work right.
- Loss of use of muscles / loss of strength. My muscles, especially the muscles in my legs, wouldn’t move like they used to. All of my movements were slow and deliberate.
- Brain fog. I couldn’t think straight. I felt stupid. I couldn’t concentrate. It was a struggle to do my job.
- Loss of memory. My short-term memory decreased significantly.
- Loss of peripheral vision. Large, black floaters entered my peripheral vision.
- Loss of appetite and weight.
- Loss of flexibility. I went from being able to do yoga several times a week to being unable to sit with my legs curled up under me.
- Loss of balance.
- Severe loss of energy. I felt like the plug had been pulled from my energy source. I wasn’t necessarily sleepy, I was just drained. The feeling was similar to the feeling that I have when I have a cold – weak and like I just want to collapse. Just slight exertion would drain me of my energy. Walking would make me tired for a whole day afterward.
- Dry mouth.
- Anxiety. I had an ongoing anxiety attack for the first couple of months after being floxed.
- Pain in my feet. I felt like I was walking on hot coals with every step I took.
- Loss of reading comprehension. I would read a page and have no idea what I had just read.
- Loss of social skills / connectedness. I felt anxious and scared in social situations. I lost confidence in both my physical and mental abilities. I felt very alone despite having a wonderfully supportive family.
I felt as if I had aged 20 years in just a week or two. I couldn’t move, think or eat. My body and mind were falling apart and I had no idea why. I didn’t think that the sudden decline in my health had anything to do with the Cipro. After all, I had stopped taking it a couple of weeks before my body started to fall apart. I thought that I had an autoimmune disease. My symptoms seemed similar to those of rheumatoid arthritis. I went back to the doctor and they ran every test imaginable on me. I was relieved to find out that I didn’t have an autoimmune disease, but it was somewhat frustrating to hear that all of the tests were showing that I was normal and healthy when, clearly, I was neither normal nor healthy. The doctors did not provide me with a diagnosis or a prognosis. Though I was desperately seeking a diagnosis and prognosis, I am thankful, in retrospect, that they didn’t misdiagnose me. If I had been mistakenly diagnosed as having an autoimmune disease, I may have treated it with pharmaceuticals that could have made me feel even worse.
I was desperate for some treatment, something to stop the downward spiral that my body, mind and spirit were in. The traditional medical doctors I saw provided no relief, treatment or healing. I started seeing an acupuncturist. He was able to stabilize my condition, calm my nerves and keep me from spiraling physically or mentally. After a few weeks feeling stable physically, I started to have days where I felt better than I had the day before. Mentally, I kept going downhill for a while, but, eventually my mental health stabilized and started to improve as well.
Eventually, with the help of my acupuncturist, I connected my symptoms to Cipro. Once the connection was made, I realized that all of my symptoms were consistent with those of others who have been poisoned by Cipro and other fluoroquinolone antibiotics. I entered the scary world of being a floxie.
For about a year, I considered myself to be sick. Though the symptoms listed above were improving, slowly but steadily, I was still sick, and a long ways from the healthy, active, energetic woman that I was before I took Cipro. After a year, I started to put “sick” in the past tense. Though I wasn’t back to the level of health that I was prior to being floxed, I was getting better and, as far as most people could tell, I was well.
Following is a list of things that I did to help me to get well, to heal. I am not a doctor. This is a description of my experience and what helped me. I hope that what helped me helps you. Everyone is different though. What helped me may not help you. One thing that I know helped me and that I know will help you is hope. I hope that the fact that I have largely recovered helps you to have hope. I hope that the other steps that I took to get well also help you to gain hope and healing.
Please feel free to contact me with any questions, comments or concerns, or to share your story.
Lisa’s Healing Tips
One of the many frustrating things about fluoroquinolne toxicity is that everyone’s body is different. Everyone’s symptoms are different and everyone’s body reacts differently to treatments. Following is a list of things that helped me. I hope that what helped me will help you, but it may not. I am including other people’s healing tips as well, in case their tips can help. Of course, please read these tips with the typical disclaimer in mind – I am not a doctor or medical professional of any kind. I am sharing my experience with the hope that others may find it to be useful. Please ask your doctor, or other trusted medical professional, for medical advice, and before taking any of my advice.
In no particular order, here are the things that helped me to heal.
- Time. With time, I have healed. Each day is better than the day before. Time will heal your wounds too. Eventually, you will get better. The poisonous reaction affecting every part of your body will eventually stop and you will begin to recover. I have heard several stories of fellow floxies having a timeline similar to mine – slow, steady recovery for about 2 years. Other people take more, or less, time to recover. Time does help though, and most people do end up getting better as time goes on. Very few people get worse and worse indefinitely. There may be bumps in the road, but time is your friend. Time will help you to return to a state of health.
Try to be patient with yourself. It will take time for your body and mind to heal. I see this whole ordeal of getting sick as a lesson in patience (and compassion, gratitude and health). Pushing yourself too hard too soon can lead to pain, frustration and injury. Try to give yourself the time necessary to heal, and, with time, your body and mind will, indeed, heal.
- Avoid NSAIDs and steroids like the plague. Both NSAIDs and steroids are contraindicated with fluoroquinolone toxicity. They will make your reactions and symptoms worse. There are some published medical articles on PubMed about the contraindication between NSAIDs/steroids and fluoroquinolones. Searching at the library or on Google will give you more detailed information than I can provide. Anecdotally, I know that my reaction was triggered by taking NSAIDs (ibuprofen that I took to help me to deal with menstrual cramps) and it was exacerbated by taking prednisone (a steroid). Please note that I did NOT take NSAIDs or steroids at the same time as Cipro. I took ibuprofen 2 weeks after I finished taking Cipro and it triggered my toxic reaction and I took prednisone 3 weeks after I had finished taking Cipro, after my reaction had started. I will never take another NSAID or steroid again.
Unfortunately, NSAIDs and steroids are the drugs that are the most commonly prescribed drugs used to “treat” fluoroquinolone toxicity. This is because the combination of NSAIDs/steroids and fluoroquinolones does not always cause a toxic reaction, the toxic reaction of combining fluoroquinolones and NSAIDs/steroids can occur even when the drugs are taken weeks or months apart, doctors and other medical professionals don’t acknowledge fluoroquinolone toxicity and so they don’t look for the contraindications and because many of the symptoms of fluoroquinolone toxicity are treated with NSAIDs and steroids. The pain killing qualities of NSAIDs and the swelling reduction qualities of steroids make them the drugs of choice for treating many of the symptoms of fluoroquinolone toxicity. Don’t take them though! In my nonmedical opinion, I suggest taking non-NSAID over-the-counter pain medicine like acetaminophen (Tylenol) for pain (or marijuana – which is probably better for your liver), and antihistamines for the swelling.
Often, fluoroquinolne toxicity is misdiagnosed as an autoimmune disease. In particular, it is often misdiagnosed as rheumatoid arthritis. Many of the drugs that are used to treat rheumatoid arthritis are NSAIDs. Don’t take them.
- Acupuncture. I credit my acupuncturist with saving my life. I can only guess how I would have fared without my acupuncturist, but I imagine that I would have ended up in the emergency room, pumped full of steroids and antidepressants, having a massive anxiety attack and unable to walk. That didn’t happen though and there really isn’t any point in surmising about what could have been. I do know that acupuncture stopped my downward spiral and got me on the road to recovery. Both the acupuncture needles and the herbs that he provided gave me immense relief. I don’t know why or how acupuncture works, but I do know that it worked wonders for me.
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Supplements. I have taken more supplements than I can remember. 90% of them had no noticeable effect on my health. Here is a list of supplements that I think helped me.
Iron. I take a low dose iron supplement – only 5 mg. – daily. The brand of iron supplement that I use is Pur Absorb, but I’m guessing that other low-dose iron supplements will work equally well. Within just a couple days of starting taking the iron supplement, my energy levels increased dramatically. I could walk a mile without being exhausted afterward. In addition to improving my energy level, the iron supplement seems to make my muscles and tendons more supple and malleable. When my tendons are feeling tight, a dose of iron helps to loosen them up – within just a couple hours. Too much iron is really bad for you, so please be careful with supplementing it (ask your doctor, yada yada), but it helps me immensely.
Magnesium. I take 250 mg of chelated magnesium daily. I don’t necessarily notice that it makes me feel better, but I do notice that I feel worse when I don’t take it. My muscles twitch if I don’t take my mag.
Zinc. I take zinc when I get around to it. I remember feeling mildly better when I started taking it. It doesn’t seem to affect my health dramatically though.
Chlorophyll. I take chlorophyll about every other day. It seems to help with my energy level and mental functioning.
I also take fish oils, resveratrol, a probiotic, a joint supplement, CoEnzyme Q10, vitamin B12, chlorella, glucosamine, brewer’s yeast and some other supplements. They may help. I can’t say that I feel a difference using any of them.
- Meditate. Meditating has so many amazing, positive benefits for your brain, your life, your spirit, etc. that I can go on about it ad nauseam. Meditation helped relieve a lot of the mental symptoms of my fluoroquinolone toxicity. My anxiety, inability to concentrate, inability to connect with others, depression, loss of reading comprehension, decreased mental acuity, etc. were greatly reduced (or improved) through meditating. I meditate about 10 minutes each day. I should meditate more like 20-30 minutes a day.
Meditating helped me to gain compassion for myself and my situation. It also helped me to let go of the anger that I felt toward the pharmaceutical companies and the medical culture that allows fluoroquinolones to be on the market. The pharmaceutical companies and the medical culture are both messed up and blame of them is justified, but anger and blame were not serving me mentally, emotionally, spiritually or physically. I needed to let go of my anger and blame in order to move on with my life. Meditating helped with that.
I learned to meditate through taking a class called Mindfulness Based Stress Reduction that was offered by my health insurer. It was an excellent class based on the work of Jon Kabat-Zinn. Many Buddhism centers offer Mindfulness Based Stress Reduction or Meditation 101 classes.
- Get off the internet. Most of the information available on the internet about fluoroquinolone toxicity is horrifying. Fluoroquinolone toxicity is horrifying. It is scary. It is completely unacknowledged by the medical community – the doctors, nurses, etc. who we go to in order to make sense of things when our body goes hay-wire – so we seek answers on the internet. Unfortunately, most internet sites devoted to fluoroquinolone toxicity do not provide a balanced picture. They show the harm and the horror of fluoroquinolone poisoning, but they don’t show the healing and hope that most people eventually experience. I am writing and distributing this in order to provide the perspective of hope and healing. Some people are permanently disabled from fluoroquinolones. My heart goes out to those people and they have every right to scream their story on the internet. However, their story is not your story. My story is not your story either. But if you’re going to look to the internet for a prognosis, it’s better to find a hopeful prognosis than one that is full of doom and gloom.
When I participated in the online forums for Floxies, I noticed that my anxiety levels increased significantly. Even after I was 90% recovered and I thought I could handle it, my anxiety levels would go up simply by reading about people being floxed. Inducing anxiety is one of the worst things that someone suffering from fluoroquinolone toxicity should do. Anxiety makes all symptoms worse. I would slowly relapse and my symptoms would get worse every time I participated in the online forums.
Of course, the people participating in the online forums are seeking to help fellow Floxies, to commiserate and to participate in a support group. It is not their fault that my anxiety levels increased when viewing their sites and/or support groups. After all, most people on those sites are trying to be helpful and supportive. However, the net result of participating in the forums for Floxies is that my anxiety levels increased and my health declined while I was on those sites. I am healthier and happier not participating in the online “support groups” than I was while I did participate in those groups. Of course, this is my experience only. Many people find solace in the Floxie community and if it helps you, great!
The people who have worked hard to create a community of Floxies to support one another should be commended. It is because of their hard work that thousands of people have realized what is going on with their bodies and that they are not alone. The community of Floxies is full of wonderful people. However, you need to do what you need to do to take care of your health and if you find that hearing other people’s stories increases your anxiety levels, get off the internet. For you.
- Diet. I lost 11 pounds in 18 days when I first got floxed. My body was going hay-wire and it seemed like an allergic reaction. I had no idea what I could possibly be allergic to so I stopped eating almost everything. I didn’t eat sugar (including fruit), gluten, dairy, soy, anything non-kosher or anything spicy, or drink any alcohol or caffeine, for a month. I only ate vegetables and organic meat. It’s a highly effective way to lose weight, but I don’t think that restricting my diet severely helped me to heal. Restricting my diet gave me a sense of control, and that’s not a bad thing when your body is self-destructing, but I don’t think that it made me feel any better physically. After a month of only eating veggies and organic meat, I started to add normal foods into my diet. As soon as I started eating an appropriate number of calories, I started to feel better. Not only was I Floxed, I was also wasting away when I wasn’t eating normally. Getting enough food is an important part of healing. Of course, it’s generally good to be on the “don’t eat junk” diet, but I didn’t find that cutting my food intake significantly helped me to feel better.
Many Floxies develop GI problems. I was lucky in that I didn’t have many GI problems. Many people seem to be helped by cutting gluten, sugar and/or junk food out of their diet.
I notice that I feel slightly worse than normal when I consume sugar and/or caffeine. I think that most people do, I am just now accustomed to paying closer attention to my body.
The only food that makes me feel noticeably better is beets. For some reason, beets make me feel great. I just boil them and eat them.
I’ve heard good things about the benefits for Floxies of eating broccoli and other cruciferous vegetables. I love broccoli so I try to eat a lot of it. Unfortunately, I can’t say that I’ve noticed that it makes me feel better.
- Swim. My tendons and muscles feel significantly better when I’m in the water, and for several hours after I finish swimming. Swimming in the ocean feels especially therapeutic. There are so many minerals and trace nutrients in the ocean, I surmise that they’re helpful for healing. Unfortunately, I don’t live near the sea, so I swim in a pool. I feel better when I do so.
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Pilates. I started doing Pilates about 7 months post-floxing. Pilates strengthens the core, something that is generally important, and gently stretches muscles, tendons and ligaments, something that is particularly important for Floxies. I started slowly and gently and didn’t push my tendons, muscles or ligaments too much. I feel that gently stretching helped my tendons, muscles and ligaments to heal and return to (close to) their pre-floxing capacity. Take it easy though.
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Healing arts. I love to dance. I’m not a good dancer, but I love to do it. About 16 months post-floxing I started to dance again. Dance has been healing for me. I feel spiritual, strong and joyful when I dance. I’m not sure if it’s the dancing itself that I find to be healing, of if it’s the joy that I feel when I dance that is healing. Either way, it helps. I surmise that other forms of expression would have similar healing qualities. If you love to sing, sing. If you love to paint, paint. If you love to write, write.
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Attitude tips.
Try not to compare yourself to how you used to be. I used to hike 20 miles in a day. I can’t do that anymore, but I can hike 3 miles today and I couldn’t do that when I first got floxed. Compare yourself to how you were yesterday, not to how you were before you got floxed.
Do something – anything – to work toward healing, every day. Walk a little further than you did yesterday. Meditate. Take an Epsom Salt bath. Get an acupuncture treatment. Do a puzzle. Whatever makes you feel good – do it. Every little step helps.
Don’t kill yourself. Have hope. You will get better.
You’re not crazy. You’re sick. Have hope. You will get better.
You’re not stupid. You’re sick. Have hope. You will get better.
Try not to identify yourself as sick. The mind is a powerful thing so try to stay positive. It’s hard, I know. But try, because it’s worth it.
You will have bad days. They will pass. This all will pass. It is not permanent. You are strong – present tense. You were knocked down, but you weren’t killed. You will get better.
Don’t quit your job. Try to maintain as much normalcy in your life as you can.
It is not your fault. Even if you knew better, even if you demanded the most powerful drug possible from your doctor, even if you self-medicated, even if you coerced your doctor into giving you the fluoroquinolone antibiotic, even if the infection that you were treating was something that you got because of doing something stupid, or from sex, even if you continued to take it after you started to get sick, even if you floxed your child/parent or other loved one – IT IS NOT YOUR FAULT. You are sick. You are poisoned. You are not to blame for your sickness or for the fact that you are poisoned. Who to blame is a discussion that I don’t want to get into because I want this to be positive, but it is not you. You are not to blame. You are a victim. It is not your fault.
Lisa’s Life now
Life is good. I don’t consider myself to be sick any more. I’m not quite up to my pre-floxing capacity in a couple of areas. I don’t have the endurance, energy, strength or flexibility that I used to. However, I’m pretty close to my pre-floxing capacity in those, and other, areas. I’m about 99% better. Not being capable of intense exercise since December, 2011 has left me a bit out of shape, but I’m working toward being able to exercise intensely again and my stamina, strength, energy, etc. are increasing. I can’t hike 15 miles with a backpack on quite yet (something I could do before I was floxed), but I am capable of most physical and mental activities that would put me in the “normal” or “not sick” categories.
I can work full-time. I am grateful for the fact that I have a job that is not too demanding physically or mentally because I was able to hold onto it through my worst times. My boss and coworkers were wonderfully understanding and they claim not to have noticed that I couldn’t think straight for about a year. I even got a promotion about a year post-floxing!
I can do Pilates 4 times a week, swim 2 times a week, dance once a week and walk daily.
When I was unable to walk a block I told myself that I would consider myself to be “better” when I could dance all night in heels (my feet hurt like hell when I was sick), I can do that now. I never liked high heels, but I can wear them now.
My memory isn’t quite what it used to be, but it’s good enough to do well at my job and to maintain my relationships.
In many ways, I’m a different person than I was before I got floxed. This has been perplexing for me and my loved ones, but it’s not an altogether negative thing. I’m a much more spiritual person than I was before I got sick. I was a pretty firm Atheist before I was floxed. Now, through meditation, dancing, believing in alternative therapies that focus on energy, etc., I’m finding some spiritual outlets that I didn’t have, need or want in the past.
I have become a more compassionate and patient person. I now empathize with people who have mystery diseases. I used to have the attitude that I now find so frustrating in medical professionals – that if there isn’t a way to diagnose or treat an ailment, it doesn’t exist. Now I know that people are genuinely suffering and that there is a real cause for their pain – regardless of whether or not it is acknowledged by the medical community. My heart goes out to those in pain.
I had to become more compassionate and patient with myself as well.
I like some things that I didn’t like before I was floxed and I don’t like some things that I used to like a lot. I hated swimming for the first 32 years of my life. Now I love it and consider it to be an important aspect of my healing. I used to like working out in an intense way that got me dripping with sweat. Now I like to do exercises like Pilates that are focused, slow and deliberate. I used to love hiking, camping and backpacking. I miss loving those things so I’m going to try to get back into them, but I’m not sure that they’re my passions any more. Drinking used to be one of my favorite pastimes. My tolerance for alcohol is shot now and I don’t really enjoy it any more. I missed it for a while even though I knew that it was for the best that I wasn’t drinking like a fish. My appetite has changed as well. I used to be able to eat a lot of food and I loved to eat. I still eat, of course, but I don’t eat as much as I used to and I don’t eat with as much gusto. This is probably a good thing seeing as I’m not into exercising intensely any longer.
Even though I would do just about anything to turn back time and not take Cipro, the place that I am in life isn’t bad, and I probably would be someplace different if I hadn’t gotten sick. It sucks that I had to gain empathy for people who suffer from pain, mystery ailments and debilitating fatigue, but it’s probably a good thing that I now have more empathy. I would like to think that I’m a better person from going through this. I’m not a stronger person, but maybe I am a better person.
I hope that my tips and words of advice are welcome and helpful. Please feel free to contact me if you have any questions or concerns.
** The story above is truthful, accurate and told to the best of the ability of the writer. It is not intended as medical advice. No person who submits his or her story, nor the people associated with Floxie Hope, diagnoses or treats any illness. The story above should not be substituted for professionally provided medical advice. Please consult your doctor before trying anything that has been mentioned in this story, or in any other story on this site. Please also note that people have varying responses to the treatments mentioned in each story. What helps one person may not help, and may even hurt, another person. It is important that you understand that supplements, IVs, essential oils, and all other treatments, effect people differently depending on the millions of variables that make each of us unique. Please use appropriate caution and prudence, and get professional medical advice.
Lisa, thank you for writing back so quickly! You are right about the Advil, took some last night for the back pain and I woke up this morning, feeling like had taken poison! And I have taken Advil for years. Will I ever be able to take it again or is it only post-flox?
Lisa,
Thank you so much for responding. Tonight I am awake at 12:47 am from feeling like burning in my knees, twitching and anxiety woke me up cold. I am going to take a magnesium bath and try to meditate which you mentioned. I took a dose of magnesium because I’ve seen that the supplement can immensely help the twitching. I am just trying to remain calm because my husband is very worried. I am on a paleo autoimmune diet anyways (for 5 months) along with many gut healing supplements and practices so I’m hoping I’m in somewhat of a “better” state to deal with this, but boy am I afraid. Your story gives me hope and I won’t give up.
-Thanks
Lisa, are you able to take Advil now or did you just stay off of it while you were de-floxing? Also, what did your acupunturist do to help during your recovery? Did he/she just put in the needles for drug posioning or your well being? I just need to know what to tell mine so he can ajust accordingly. Kris
Hi Lisa,
I am 36 and I was floxed 3 months ago, 5 pills of cipro over 5 days (2.5 g total). I have a question about the pain in the hands that you mention. Mine started very slowly about 2 weeks after exposure to cipro and then increased significantly during the second month. I had an ultrasound examination of the hands and they saw nothing: no inflammation in the joints and no anomalies in the tendons. So now I wonder where the problem is… nerves, cartilage, blood vessels? or maybe muscles/tendon/fascia problems caused by cipro but that the ultrasound is not able to detect? Do you have any considerations on this, based on your experience? And what was your hand pain like? Mine is connected with use of the hands, when the hands are at rest it tends to go away. When I take magnesium the pain is less. I see no swelling of the hands, maybe just a little on the veins in the fingers.
Thank you in advance for your answer.
Thank you for writing back! I have sent 60 Minutes a note asking them to include your story in one of their segments, but have not heard back. I figure if they can get Lumber Liquidators in trouble, think what will happen to the people who make Cipro! Plus it could help so many people. Right now, I am dealing with the back pain and brain fog. I can’t be around a lot of noise! Or smells. I can’t seem to wear my perfume. Today I start PT and I tried a massage, but that hurt terrbly the next day. I can’t take a lot of meds like your floxie friends on this web page, but I have increased my magnesium. Only trying a half of a pill first. Kris
Lisa, do you think the chelated magnesium or the magesium malate is better? Gal at Vitamin shop thought the malate. Kris
Thank you for your story. I just finished Cypro for a uti and have been extremely anxious, having multiple panic attacks per day with tingly hands and vomiting. My doctor put me on anti anxiety medication which helps out a lot but once the meds wear off I’m back to feeling anxious. I will try acupuncture as you suggested but was wondering if you have any other tips to get myself to be normal again?
Hi Joanna, I agree with Lisa, as my acupuncturist has helped me with anxiety also. You might want to get the book The Anxiety and Phobia Workbook which has helped me tremendously. (author is Bourne) (Lisa hope its Ok if I endorse this book) and find yourself a good therapist who will help you with breathing exercises to combat the anxiety. The other book I liked was Chronic Resilence, living with a chronic health issue. Hope this helps, Kris
Hi Lisa, I am so glad to have found your story, I had a 12 day course of cipro 500 twice a day 8 weeks ago, The day after I finished I ended up in the emergency ward with an anaphalatic reaction that the Dr put down to a food allergy even though I don’t have food allergies and prescribed my steroids, thankfully I didn’t take them. I then developed red itchy blistered backs of hands and tops of feet and red hot knees, the last week my knees have become unstable and painful inside, creaking and clicking, all other joints large and smell click and clunk and I have tingling in my feet and hands along with a headache and loss of appetite. I am so scared, I have a physical job and have to phone in sick today, is it better to rest or keep trying to go on, walking is difficult although once I get going it gets easier. Do you think I will get better or gradually worse?
Hi Lisa, I am 37 years old guy and I was on CIPRO month back for UTI. I took 500 MG twice a day for 7 days. I was having no issues except some burning sensation in my legs and hand. I have very minor pain in my finger joint which went away after few days but I have burning sensation in my legs. Post 1 week of Cipro i saw that i have fungi in my mouth and thus dry mouth issue. I saw my GP and she gave me Clotrimazol and fluconzol for 20 days and i feel somehow okay but still i see that fungi is not gone so now she has recommended me to go to ENT which i am going to see on 9th June 2015.
I have read your article and i really say that you did fantastic job and your story gives many a hope that they will be better soon. I am also very strong minded person and thinking that my symptoms will go soon and i will fight with it.
I just wanted to know if you have done any specific thing for Dry mouth. i am getting better but since fungi is not going fully i just need your opinion if you have done something in this regard.
i will post all my healing exp once i will come out of it.
Should i start anything for burning sensation which you saw in your case it worked.
I appreciate your response on this.
God bless Lisa.
MR
MR, I am not Lisa, but suffer from a dry mouth also. Your dry mouth probably caused the thrush in your mouth, not visa versa. Biotene did not help me much. The spray worked before bedtime. The ENT will probably put you on Pilcarpine which is a horrible drug and I would not recommend it. It gives you saliva for awhile, but then you have terrible night sweats. I went to an acupunturist last fall when my mouth completely dried up, but it took eight sessions to finally get relief. Not mainstream medicine, but is sure helped me. I am back with him now, as Cipro damaged my mouth as well. Avoid anything spicy and stick with bland foods for awhile. Eventually it will come back but it takes a long time. There are some other artificial saliva substitutes out there, you have to go online and find them. Drink lots of water that will help also. Kris, a Fellow Floxie
MR, mine became dry due to a lot of dental work last fall. I virtually had no saliva. After seeing the acupunturist, some saliva did come back but not all of it. But I have a saliva gland missing, so it is harder for me. After taking Cipro recently, it went back to being dry again. Every now and then, I will feel a spurt of saliva, and I will say to myself, goodie, goodie, but then it dries up again. I am sure Lisa will have some advice also. Sometimes it takes awhile for you to hear from her. Kris
MR, where do you find the toothpaste? Kris
I too believe I had a terrible reaction to Cipro. I have been taking Cipro intermittently for several years due to benign cystitis. I most recently took it about 4 months ago. About two weeks after taking Cipro for an UTI I woke up in the middle of the night with severe pain in my shoulders – right being worse than the left. A few days later, I lifted a sauté pan and “pulled a muscle” in my right forearm. The pain was so severe that I had difficulty moving my arm/ hand/ shoulder for about 6 weeks. There were days that I was so tired and so uncomfortable that I just couldn’t get out of bed. I went to my ortho and he diagnosed me with tendonitis of the rotator cuff and recommended PT, which I started. A few weeks later, not figuring out the Cipro link my GP advised me to stop taking Lipitor as that might be contributing to the muscle soreness and cramping in my legs, hips, arms that was keeping me up at night. A few weeks later, with the muscle soreness and shoulder getting slightly better, I picked up a pair of binoculars and as soon as I looked into it I felt a pop and click in my right eye. I went to the Opthalmologist today and he diagnosed probable Brown syndrome (eye is restricted in movement due to problems with the muscles and tendons that surround the eye) which can result from am inflammation of a tendon sheath leading to the eye. I can find no research linking the Cipro to the eye syndrome, but it certainly seems possible. I suppose now it’s a waiting game – to see if the eye syndrome returns and the muscle/tendon soreness recedes
Cara, do you feel that the PT is helping? I just started PT myself about two weeks ago for shoulder and back, also from lifting something after a few months off Cipro. I am worried it will make other things worse, like my wrist and elbow, because they have you use those rubber straps. I can only move my head so far and my neck was affected as well. Kris, a Fellow Floxie
Hmm, all this time I thought it was just me, then a friend sent me to the internet. I took Cipro in 2012. I developed severe tendonitis in my shoulders. It took over a year for that pain to subside, but now I’m getting other pains, which I contribute to the Cipro. I will try the magnesium and stay away from Motrin.
Hi Tyson,
First, I want to wish you continued recovery. When you say you’re 8 weeks out and can take a long walk, I think that sounds promising. Back in 2006, I experienced much of what you’re going through – joint pain, anxiety, cycling thoughts. In addition, I experienced extreme brain fog, poor fine motor skills, fatigue, snapping vertebrae (I know I’m forgetting other things…). It took a long time to heal, but I did heal. I went from collapsing on the couch and often being only able to work half days to walking five miles a day and lifting some arm weights (this took time!). I did take Neurontin and Klonopin for nerve pain. I wasn’t having panic attacks, more just general anxiety, but those meds were not for that. They helped with the pain so I could continue work. The problem is that Klonopin is a benzo and not for long-term use. I wish I only took the Neurontin as it was easy to discontinue.
Time is the key. I was so scared, as you are, that the anxiety was leading to depression. What I think is important to know is that many of us are doing much better than we were post-flox. Just keep listening to your body – don’t overdo it. You’ll feel good one day and think, “Oh, I can move a mattress.” (Don’t do this! I tried it and was in pain for weeks.) Keep moving forward slowly and see what works best for you!
It took me nearly two years to feel like “the old me” again and then three more to feel “better than the old me.” I started eating better, thinking about life better, and exercising more. When I had a relapse this past year (Sept 2014 – December 2014), it wasn’t as bad as the first time and my approach was much better. I took it easy and made my only daily goal to heal. I actually put a sticky note on my laptop that said “Heal.” It was the only item on my to-do list. I didn’t need meds and relied on gentle yoga, meditation, and a healthy diet. If I need to, I will heal myself again.
Don’t give up! Stay around positive people!
I find Idebenone to be very helpful for the anxiety/depression. Some people get increased anxiety and insomnia from it, but you can get that from traditional SSRI’s as well. The nice thing about Idebenone is that it is the best antioxidant in the world. It works as an antioxidant even if there is no oxygen getting to cells– most antioxidants become oxidants in that situation. They pack organs for transplant in Idebenone. I found an article somewhere that it was shown to protect cells from Cipro tendon damage if pretreated with Idebenone. So I got some. My tendon got better– I was also taking MitoQ, so who knows what helped most with that.
But within ten minutes of taking my first dose of Idebenone I got enough relief from the anxiety to be functional. I went from wanting to crawl out of my own skin to being still uncomfortable but ok almost immediately. This was not a placebo effect, as I was terrified to take it. I read that the possible side effects were increased anxiety and insomnia, and I had plenty of each of those already. But it helped, despite my fears.
It helps your body use tryptophan better to make serotonin. The bottle says it promotes positive brain chemistry. The serotonin boost lasts about four hours. I take it two or three times a day with meals. It is fat soluable. I take 50 mg at each dose. You can go higher, but I doubt you would need to. I get mine at HBC Protocols online.
Theonine is also good. L-Theanine is proven safe at high doses. I used to take 200 mg 3x a day. That is best on an empty stomach.
I was like you– able to walk and get around pretty good by eight weeks, but I had the continuing brain fog for longer than that and definitely the anxiety. That is still continuing at sixteen months out, but slowly getting better. The Idebenone continues to help. I don’t really even take much theanine anymore.
If you are on a Benzo now I think you have to do a very slow taper. Usually you only need to do a super slow taper if you’ve been on it long term, but with the FQ damaging your nervous system first, I think you might need to be extra careful. Benzo buddies has information on how to do a very slow taper. It’s extremely dangerous to just quit a benzodiazepine cold turkey under any circumstances.
I used to take a product from a company called Neuroscience called CalmPRT. It’s pricey but worth the money. It is as good as a benzo at controlling the anxiety. Made me kind of stoned, and as I healed I decided I didn’t like that feeling. But at the time I needed it, it really helped. I found out I can’t take it and play the organ at church because it made me so mellow that I was making all kinds of mistakes, but I felt really calm about it. I would just leave my foot on the wrong pedal for several beats at a time because it was more convenient, and I felt fine about doing that… Don’t drive while on the CalmPRT. Probably not a good idea.
Lately my brain has been sharper at times– way sharper. It’s like I have this super laser brain. It started happening a few months ago. I think it’s from increased adrenaline, but not too much of it. When my symptoms are flaring just the right amount I can play counterpoint on the organ like nobody’s business. I can perceive multiple melodies as if I’m sitting back and listening and think about what I want for lunch at the same time. If I’m having a really good day, a very normal window, I lose that ability. So it’s not the Idebenone– it’s from the FQ toxicity syndrome. My face will be slightly numb, or the bridge of my nose feels tight, and the world seems just a bit more stimulating than it should– but I can play the organ like I’ve never been able to play ever in my life. So that has been cool.
Don’t worry about getting all your cognitive faculties back. You will. I imagine you will hit the point I am at and get a little sharper. I don’t think it’s going to last long term though.
Lisa and Ruth,
Thank you both for your in depth responses. I have only taken a few Xanex (.25mg) and I really didn’t notice a big relief. I will toss them out, I want no part of drugs after this whole situation. I have taken a lot of the GABA though, as I thought it was basically mandatory for a floxie. I will try and cut back on that too. I feel the Mag oil spray helps as well.
I used to get horrible attacks for the first couple weeks, and then they went away. I would feel good for a few days, and I thought, “Yes!! its all over!” Then after those few days I would start to feel all the symptoms come back (memory loss, confusion, brain fog, no appetite), and the anxiety was always the worst. I will try to track these “good windows” and see if they are diminishing with time.
My anxiety is the worst in the evening around 8pm or so (very bad repeating thoughts during this time). I’ll have this bad attack for a few hours and then around 11pm I will suddenly feel calm and relaxed (not totally but much much better). Its very strange but I am so grateful when I finally calm down.
Then comes the task of getting to sleep. I used to get terrible night sweats and wake up many times for the first few weeks. Thankfully that doesnt happen anymore. Now I have to take 10mg of melatonin and focus on good thoughts to get to sleep. I still wake up every morning at 5am, then I have take a little more melatonin and will get back to sleep at 6am. Then I have to wake up at 8am for work and I’m a complete zombie till about 1pm. The melatonin hangover doesn’t help the depression either, which sucks! It seems everything I do to help one thing always contradicts another. Anyone have a better sleep remedy???
Again, all of this comes and goes (mostly comes). I will be bad for a couple weeks then feel like I’m improving over the next few days. Then it all comes back. Its crushing my spirit of hoping that I’ll be healed. But I’m not losing hope and I’m doing my absolute best. I will definitely try the Idebenone and CalmPRT that Ruth has recommended. I hope its they’re not addicting and don’t have long term effects.
I’ll also look into acupuncture. I never ever ever thought I would need acupuncture or any kind of therapy, all of this is overwhelming but I’m sure I will get used to it and gradually heal like most others. I also will get off the internet as Lisa recommended. It definitely contributes to my anxiety. I was on it the first couple weeks then told myself never to get back on because of this. My symptoms are kicking extra hard today so I decided to get back on today.
I take cereal and milk before bedtime. The milk makes me sleepy. I, too have the bad thoughts around 8:00 in the evening. I had to cut back to one day at work, so I am depresssed with not much to do, although I am in Physical Therapy because the Cipro weakened the muscles in my back and now I am in so much pain. I have that awful brain fog but usually in the morning when I first get up. It subsides in the afternoons. Kris