*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.
no I just sue not mini lee
I also have the problem and have written on here a few times
I had read your post and thought I would say where I was in the universe
Hello Sue ,
So sorry dear! because your reply happened to come in after i asked Mimi Lee, so i thought both of you are the same. ok got it now 🙂
i hope you are doing well Sue 🙂
Thank you so much Lisa!! You also have touched base with my husband so thank you for that too ! My homeopath had started me on chorella and will eventually add a cilantro tincture for heavy metal detox. He is convinced that levaquin wakes up heavy metals in our bodies. I wonder why some people twitch and some don’t. How did you know when your legs were ready for stretching/Pilates? All my pain and tightness is in my quads. If I don’t wear compression shorts under my clothes it is so painful to walk. I am assuming I will know when I a ready??? I dontcwsntvtovcause more damage. You also mentioned returning to a normal diet. I have lost 12 pounds and I was thin prior to this. I haven’t had stomach issues thank goodness. What did it mean for you to go back to a regular diet. I would love to thinkbi can go to a restaurant again- and just not eat the meat:) thanks again!
Hi I just did a course of Cipro 500mg 2 times day for 5 days for a bladder infection. Im a 47 year old female, healthy with a history of some hormonal issues/thyroid but over all very healthy. I noticed sever insomnia while taking cipro but didn’t think it was something to be overly concerned about. Continued taking the drug until the 5 days were up, then I noticed this unusual energy even though I still wasn’t sleeping after one week of being off it, Then terrible heart palpitations, would wake me up if I did fall asleep and my heart rate was 130 for 3 days. Went to the hospital and they ran test couldn’t find anything but could see how laboured the heart was so put me on a heart holter for 48 hours. They said the heart is labouring and beating very fast but didn’t think it was a problem generating from the heart that another problem was causing it… but what? I started having tremors shaking, blurred vision and dry mouth, I also notice that if I don’t eat frequently the trembling and feeling very ill gets worse. They have ran all kinds of blood tests and cant find the cause. With all the reading I’m doing on line I’m thinking I have been poisoned by cipro! The last couple of days I’ve had anxiety spells that have been terrible! I almost don’t want to admit this because I don’t want to be chalked up to the lady who developed anxiety and let medicate her and not listen to her since her blood tests were fine. its been two weeks since I got off cipro and I praying that all these symptoms pass and I will be able to resume back to living a normal healthy life. My heartbeat is still keeping me awake but its much better then before, its beating at about 80 instead of 130 and it isn’t as irregular. Still experiencing tremors, nausea blurred vision, weakness and anxiety.. My heart goes out to those who struggle with anxiety, Ive NEVER experienced anything like this before, My doctor prescribed me sleeping pills and I only take half and get about 3 hours a night I don’t want another problem to develop from taking a sleeping pill. Do you have any insight or advice? I’m open to seeing someone for acupuncture, have you heard of a mild liver detox for treating this? Wondering if that would help? Thank you for your time!
Sincerely
P. Lynn
try co q10 75 mg for the heart that helped me vitamin b complex for the sleeping
Jarene,
Don’t worry about the name. PQQ being a quinone has nothing to do with quinolones. PQQ is not a quinolone. The post I read about PQQ made that point. You don’t need to fear taking PQQ, but the name being similar also doesn’t indicate it will necessarily be a cure.
I take MitoQ, but bought PQQ from a different company. The MitoQ I have is just CoQ 10 that targets the mitochondria. It was shown to stop abnormal cells from replicating in a tendon damaged by a fluoroquinolone. But the study made it clear that MitoQ did not stimulate new healthy cells to grow. That’s why I added the PQQ, because it is supposed to stimulate the biogenesis of new mitochondria in aging cells.
Aside from one damaged tendon, I don’t know how much mitochondrial damage I actually had from the Cipro. Even that damaged tendon could be solely from the loss of magnesium weakening those tissues rather than oxidative stress damaging cells. I was mildly floxed, so I don’t know if I’m the best test case. But then, perhaps I’ve escaped harm because I started these powerful supplements early on. I still think magnesium is very important in preventing and reversing damage. My cognitive symptoms cleared up well before I started MitoQ or Idebenone or PQQ. Just from supplementing magnesium my brain fog cleared and my cognitive abilities returned to normal, or very near normal. But sometimes mitochondrial damage shows up later, so maybe the antioxidants played a role in preventing damage. There is no way to know, but I’m feeling very good right now.
I think my new supplement Calm PRT, by NeuroScience may have a lot to do with my recovery too. It contains Rhodiola Rosea, among other things. It helps control anxiety, but it’s also an adaptagen. Athletes use it to better tolerate hard workouts. It helps the body adapt to a variety of conditions. So perhaps it’s helping to not only cover symptoms, but to actually help my body heal itself. There is no way to know, except to say that I was really bad three months ago and now I’m very close to being back to normal. I keep expecting another relapse, but every day is about as good or better than the previous one, with very few, if any symptoms. I might just have good genes. But it’s my dad’s side of the family where the women look 40 when they’re 60 and are as strong at 80 as most people in their 50’s. But mitochondrial DNA comes from your mother only, and on that side of my family they pretty much die young. There’s just no way to know what all happened inside my body or yours from the FQ’s. But I would recommend all the supplements I’ve taken because I pretty much have my life back at only three months out. I’ve been nearly symptom free for a solid three weeks. Even if I have another relapse I can live with it. Because I am now convinced that I am going to make a complete recovery. I can just feel it, that it is going to happen. I certainly haven’t any side effects from the supplements mentioned above, so it can’t hurt to try. I hope they work for you!
Hi Lisa,
I figured I might as well post this here since I more or less said I would. I had the 23andme test done, and according to it out of the interesting SNPs I’m MTHFR A1298C +/-, BHMT +/- and CBS A360A +/+.
The CBS+BHMT combination is a possible culprit for my reactions, producing too much transsulfuration (too much ammonia & sulfate, not enough glutathione, etc.). Unfortunately I have no way of actually getting tested for things like homocysteine/ammonia/sulfate right now to confirm if it’s actually causing a problem. Not much more I can say about it except that TMG/betaine and phospholipids (like lecithin) happen to be some things promoted to help (the BHMT part).
But maybe the most interesting is that combined with A1298C these are all mutations that can induce low BH4 and thus poor nitric oxide handling (e.g. shifted to superoxide & co., as I understand it). This has been interesting me for awhile because I’ve certainly matched low nitric oxide symptoms, and as you’ve pointed out this is a possible way FQs do damage. I imagine someone with low BH4 would be more susceptible.
That’s probably the most information I’ve managed to get in 5 months.
I have a question about healing from tendon damage vs. nerve damage?? I am not seeing a lot of stories about people reporting the tingling, twitching, buzzing, etc. that I have in my legs (only occasionally in my arms). Is there also hope in healing from what I assume is nerve damage? Will time also heal this?? Thank you!!
Thanks so much for the response! I have non idea- I haven’t had much cycling- just consistent twitching in legs and tingling when not twitching. Nothing is numb (shoud I even tempt bathe universe by putting that out there??). My arm and hand had originally gone numb but thatvredolved within a few months with only occasional return of a strange feeling. I take Kavinace (all natural) to help anxiety which says it provides GABA support . I am most concerned about what is causing muscles to continuously fadiculate? (I am five months out). Wondering if that’s nerve damage ? Will any iv therapy help nerve damage? Also trying low level laser on Wed. Thx again! Bottom line- I will assume people also heal from nervous system damage:)
Thank you so much!! I will stop Kavinace – do u think damage already done if I’ve been on it for several months? I wonder if magnesium iv would help twitching. I just don’t see a lot of people who address this or say if and when it ends. It was my first symptom that something was wrong (to say the least!)
Chris,
I have had some sensitivity to sugar since being floxed. If my symptoms are flaring I might only be able to eat half a banana. I just feel like it’s way too much sugar. My husband laughed at that and said to just eat the whole banana but I couldn’t. But that symptom never lasted more than a day and has not returned. If it disappeared for me, it can probably disappear for you. Unless there is another cause.
My insulin glucose reaction isn’t great on a good day, because I’m fat. Insulin receptors need to be near each other to communicate. Overweight people, like me, have large fat cells that separate those receptors. That’s how Dr. Whitcomb described it to me. But if you aren’t overweight the symptom should resolve with time.
It can be hard to know what is the FQ, what’s another cause, or even if it is the FQ– why is it causing that symptom? Sad our doctors can’t even tell us. I think I put more effort into researching music history lessons for my upper grade students than my doctor put into researching Cipro before prescribing it to me. Such negligence, though Lisa gives her credit for stopping prescriptions for it to anyone else.
Lisa,
You have said time and again that these reactions to FQ’s are not rare. Once again, I found proof of that in my own life.
My neighbor across the street from me was floxed about two months after I was. If only I had taken the time to talk to her just once during those intervening two months and tell her not to take Cipro! But early on I didn’t feel much like talking to anyone much of the time…
She, like me, was mildly floxed, but like me it didn’t feel mild to her. She went to the ER and her blood magnesium level was so low they admitted her to the hospital, gave her IV magnesium and kept her for five days. Had she not stopped by to chat a few days ago she still would not know the cause of her mysterious illness. Our symptoms are remarkably similar, and at this point she has no tendon damage. I told her about the importance of antioxidants and gave her the rest of a bottle of NAC, since it gave me a rash after two weeks.
N-Acetyl Cystene is a very potent antioxidant– they give it for Tylenol overdose. Dr. Whitcomb had me take it because it is great for mopping up a great big mess in your body– that’s how he described it. I felt a lot better after taking the NAC, but some people do get a rash from it. The rash went away quickly and was worth the improvement I saw from taking the NAC.
I much rather would have prevented her floxing than just help her through it. We need to tell everyone we meet not to take FQ’s so that we sound like broken record. There is no way these reactions are rare.
Hi Lisa,
I’m 36yo man and obviously also been poisoned by Cipro. After taking 2x750mg as prescribed, I started to have terrible burning in my legs and arms. Also my right eye hurts. My doctor told me not to exercise next two weeks to prevent snapping of achilles tendon. This cant be happening…I was a healthy man 4 days ago.
I think Gabapentin (also called neurontin) should help with replacing GABA receptors, not the opposite. I looked into it and decided though it might help it had way too many scary possible side effects of its own so I abandoned the idea of trying to get on that medication. I doubt the gabapentin has anything to do with your tendon soreness. It is tough to know what to do, what is safe– but sometimes I think we try to blame relapses on something when actually the symptoms cycle and are going to cycle no matter what.
Thank you so much for your reply. So just to be sure I am clear: fluroquinolones reduce your gaba receptors, while gabapentine (neurontin) increase gaba receptors?
I know symptoms can ebb and flow, but when my Achilles acts up, I become terrified.
Thanks again. I can’t tell you how much I appreciate it.
Last comment/question: I am also on a small, daily dose of clonazepam. You seem to know a lot of medical stuff, so I was hoping you could tell me if you are aware of any negative interaction between this particular medication and the lingering effects of the fluoroquinolone poisoning.
Thanks again!!
Good morning. Yes, clonazepam falls into the benzo category. I had no idea this was not safe for people who have experienced FQ poisoning. Do you know why this is (or can you direct me to some resources)? It’s so frustrating because, even though my doc knows about my reaction to FQs, I was prescribed clonazepam anyway. Yet, doctors seem completely oblivious to the dangers of FQ and all the lingering side effects.
Yes, if you could find out any info on the Gabapentin that would also be fantastic. I can’t believe you live right in West Allis and have connections to the VA. That is crazy!!
Thanks again for everything!!!
Thanks for the info Ruth. Are you in the medical field by chance?
I am on the Gaba to help with my MS symptoms. My MS kicked in to high gear – with the worse attack of my life – a couple weeks after finishing my fourth round of Cipro (over a two month duration) last September (btw I was prescribed the Cipro by a gyno at the Aurora Women’s Pavilion Center in WEST ALLIS, of all places, for a bout of chronic UTIs). As you can probably imagine, the MS – along with the two medications – make it even more difficult to determine what is causing what at this point. However, I am CERTAIN – and even my nuero won’t deny – that much of what I have experienced over the last several months is FQ-induced.
I have been looking online for some sort of reputable source to present to my psychiatrist illustrating there is a link between FQ and Benzos, but so far I can’t find much. As I have stated numerous times (and as we all know), medical professionals know next to nothing about FQ ramifications, so I need some sort of resource to present to my psychiatrist so I can explain to her WHY I need to go off Clonaxepam. Luckily, I have only been taking just .5 mg/day (1/2 of what I was prescribed) since I started back up on this med approximately four months ago. However, I know going off them will be difficult nevertheless. I have seen quite a bit of discussion on this forum RE: natural stress supplements. What do you think is the best?
I am so overwhelmed and confused. As a full-time grad student, I just cannot handle any more stress/medical issues at this point in my life. Yet, I am back to the point where I am scared to walk because my Achilles will periodically send little “shocks” up the back of my leg (and I am terrified of it rupturing). Such stress/anxiety of course makes me want to reach for a Clonazepam (which I didn’t take today), illustrating the terrible cyclic effect I am in right now. I am trying my best to stay positive, but it is hard…
Thanks again for everything.
You did send it to me, Lisa. I knew I had read it but I couldn’t remember where it came from!
People going off Benzo’s can taper and have help from medical professionals who understand protracted Benzo withdrawal. Floxed people go through the same hell, but their doctors don’t usually have a clue, sometimes don’t even believe them! There’s no way to taper or go back on the drug that damaged the GABA receptors in order to get the horrible symptoms to stop– we are just left living with a damaged central nervous system until it heals.
After Dr. Whitcomb called the Lorazepam my doctor prescribed a “bad actor” I’ve felt very negative about Benzo’s. They’re not FQ’s but they do seem to cause a lot of people a lot of pain– people who looked to those drugs to help them deal with anxiety now have to deal with an overwhelming amount of anxiety as they try to discontinue the drugs, plus uncomfortable physical symptoms and insomnia. It’s just horrible.
Lindsay,
Thanks for your kind words. If you see Dr. Whitcomb tell him I referred you and I’ll get a little off the price of my next visit. That’s not why I recommended him. I think he’s a very brilliant MD with a caring, gentle manner and a willingness to research what he does not know. He put real thought into what would help me– more than the doctor who caused all these problems for me! The supplements he recommended gave me my life back. Physically I’m very well, but psychologically I’d really be struggling without the Theanine and CalmPRT. I can tell if I don’t take them. Your case is more complicated because of MS and other meds you are on, which is why I think it would be good to just see what he might come up with for you. He recommends different tests you can do, but some of them are expensive, so you can just say no if you just want him to help you with some natural supplements to control anxiety but that won’t interact with other meds or worsen your MS. I wish more doctors factored in things like nutrition and supplements instead of just immediately going for the strong pill with the nasty side effects. I’ve got a new doctor lined up– she’s taking new patients starting in July. My neighbor Dick used to educate doctors and she was one of his students. He says she is like Dr. Whitcomb in her attitudes and she also would NEVER push someone to take a med they weren’t comfortable with. I was practically bullied and shamed into taking Cipro– my doctor acted like I was being a big baby and I should just take it. Wish I’d stood up for myself.
But if I had I wouldn’t have met Lisa or you and I wouldn’t have spent time with my neighbor Dick (first looking for info on FQ’s, but now we are closer friends) or been able to help the lady across the street who was just floxed and had no idea what happened to her… Good has come out of it. I still get pretty angry though.
Just get a FB account– it’s fun! Otherwise my e-mail is ry92696@earthlink.net
Ruth