*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.
Melanie,
I feel so badly that the things that helped me aren’t working for you. When I’d have a reaction to magnesium it would be immediate after taking “too much” and would last maybe a few hours at most. My BP would spike, my anxiety would go off the charts and I’d have numbness and usually a racing heart beat. But as soon as my kidneys cleared that excess magnesium, I’d feel fine, if not even a little better than before taking the magnesium.
Are your kidneys healthy? Is there more going on here than just floxing? It’s been such a long time since you healed. Although your symptoms sound like floxing and the CNS damage that follows it along with the loss of minerals, maybe that’s NOT what it is. Or it’s that plus something else.
I think you need a really good doctor. Like Dr. Whitcomb, who helped me. Some of Jeff’s fireworks buddies know Dr. Whitcomb and the way they described him is: “He’s just got this really big brain.” When he turns that big brain to thinking about what’s going on in your body, he is able to find some answers. Not an instant cure, no, but he did help me quite a bit. I hope that you can find someone like that– someone who believes in FQ toxicity syndrome, has some experience treating it, but is also able to diagnose other things. There just might be something else. Dr. Whitcomb did order a few tests to rule out other causes for my blood pressure spikes and other symptoms I was having. He thought of non-floxie causes that were very plausible, that my doctor should have considered. Even though that’s not what it was, it was good that he was able to consider all possibilities.
I hope that you find an MD who can really dig into what’s going on in your body. It’s very strange that half a magnesium citrate could put you flat on your back the next day. I’m not saying it didn’t happen, it’s just something so far beyond what any of my symptoms were that I can’t help you, but I’m still in your corner, praying for you and hoping for a good outcome for you.
Ruth
I’m so glad to hear that you’re feeling better, Tammy! I hope you continue to improve.
Charles,
My spectra cell test was intra cellular. But I know I still, even today, don’t have normal reserves of magnesium. Probably not calcium either. FQ’s just suck everything out of you. I was so Vitamin C deficient initially that I craved an orange and after I ate it I got a feeling of euphoria. I have never experienced anything like that in my life.
Your case and Melanie’s remind me of when I was studying to become a physical therapist assistant and we would discuss the challenges doctors face when treating elderly patients. When one body system is failing it affects others. You do something to treat the system that’s not working and the treatment itself negatively affects other body systems. It gets to a point where nothing can work right, because one problem compounds another. Floxed bodies can be a lot like that. I know getting floxed made me feel and look old.
Have you thought about consulting an anti-aging doctor? That’s what Dr. Whitcomb’s specialty is, the guy who helped me. Of course, many of the things he suggested (PQQ was one) don’t work for you… You need an MD with a huge brain, willing to consider all possibilities and find an answer. Unfortunately, the answer might just be time.
There were a few times I could barely eat anything. It just lasted a few days, but it just seemed like everything I did flared my symptoms, but being too hungry makes it worse too, so I was just screwed. But my body made it through that, so maybe yours and Melanie’s can make it through this too. I hope so.
Ruth
I am in a dark place today. Don’t want to be on an antidepressant but the overall doom/gloom is horrible. Physically I am not complaining much today, except the tinnitus/anxiety and overall fatigue. But I miss myself and I am afraid I am not me anymore. I am so fearful of everything. I made the mistake of reading a website about ototoxicity and it made it so obvious what happened to my hearing 2 months ago. Which of course makes me wonder what else won’t return to me/ and what is to come. In addition, I still have to worry about my use of Xanax (from before) and how to balance this acute poisoning with getting off the benzo. I read about tapering but it just seems so overwhelming. I still have to work….but how with all this fear?
Traci
yeah, for me since I am a very analytical person, just tossing diet, supplements, etc at ghost illness does not fly in my book. I tried that in the beginning with sups, like pqq, coq10, etc. glutathione treatments, B bit’s, oils, etc. That crap damn near killed me. It’s when I quit trying all “this and that” that I actually felt better. But I took 1000 mg of Cipro a day for 40+ days… That about 5 times as much as the average floxie here that took a weeks worth. But on the other hand, I have not had much pain at all, none compared to some here. I have the burning, tingles, insomnia and CNS related issues that drive me nuts. Tinnitus, GI issues, etc. My joints pop some here and there, but are not painful. My calves get tight, and my energy levels are so so (much improved over what they were). But the head pressure, fog, tinnitus, and PN are what really get me bad. Couple that with insomnia and I might as well be in a wheelchair. In all actuality, if you said your mental issues, tinnitus, food intolerances, etc would all be fine, but you’ll loose your legs. Fine… sign me up. When it’s at a point that I am scared to eat a cheeseburger, and have a beer, life is no longer fun for me. When I cannot even tolerate a room scent candle, or be around a basic household cleaner without either reacting to it, or just being so scared of reacting to it that i have to remove myself, or clean the house with hot water, it’s no fun. Don’t get me wrong, it’s not the same as the major pain some of us have, but in the end, I still feel like a prisoner in my own body some days.
I will keep pushing, and keep trying, I will not let this beat me, but for my own sanity, I cannot afford to just go trying every “cure” out there. My body is too whacked out to handle that. I need some concrete evidence of what is going on in my body and so far not a single Dr or test has pointed to anything other than bacterial gut dysbiosis. no DNA issue, No candida, no pathogenic bacteria, no parasites, relatively normal blood work (there are a few things out of whack but none major serious). So what is one to do? The only theory that may still fit, and I don’t know how to test for, but seems to fit is the GABA receptor damage, since when i take a benzo, I feel much better for a few days. Also when I eat foods high in glutamate I also flare up. Magnesium is a NDMA antagonist, so that plays into helping balance the GABA/Glutamate levels. Also you know that Glutamate is the key that allows more calcium into the cells. This excess calcium is what drives out the magnesium. Could be my extracellular mag elves are high because all mag in my cells is gone… Who the hell knows at this point. Maybe I’lll just eat a bottle of mag and see what happens. I know we have a mag float tank here, and I tried that. I got so much mag in my system that my pee looked like milk for about week after that. Did not help that I could tell.
traci, the fear is pretty normal. i was almost paralyzed by it for a few months in the beginning. fear, shock, PTSD, all pretty normal for this. Give yourself some time to adjust and find what works for you. Many do overcome this in time. I am not near healed, but I am better than I was a few months ago overall. I have my days where things are bad, symptoms flare up, fear get’s me, etc. But I have to keep pushing, keep trying, keep living, and hope that one day this road of hell will smooth out again. There are many that are better. Ron, a friend of our was sick (really bad) for 3+ years and he has almost completely recovered. So there is hope for all of us. It’s just hard to see it when you are in the middle of hell. My own advise (which I have to follow). When you are in hell, keep going!! You have to get to the other side. 🙂
Gaba seems like what is happening with the CNS toxicity, however there must be more. Even when taking Xanax ( to prevent withdrawals and more damage) it helps the anxiety….but not the other symptoms.
Traci,
I am going to tell you this, but I’m not sure what everyone else would have to say about it. I was floxed in 2006 and started taking Klonopin (a benzo) and Neurontin. I had such pain and had to work like you do. It allowed me to get to work, or I would not have been able to. I had NO idea how addictive it is. Since you’re already having a bad time, I’m wondering if it wouldn’t be better if you tried to get through this and then taper later on?
I wish I never took Klonopin and was not told how addictive it or that it should be used short term. I used it until 2011 and tapered it myself (veeeeery slowly). When I went off it I had a nervous week or so, but then I did fine. I guess what I’m saying is that, if you’re really, really bad right now, you might take the stress off by not worrying about the benzo. I didn’t have that much trouble getting off it because I was 99% better. I actually could have/should have started tapering in 2008 when I started feeling better after the floxing. Just a thought.
If you need anything, let me know. I will try to help.
I told myself if I got better I would do this, by the way I am not a good at this so excuse my righting… so here I go. I was a perfectly normal, health 44 year old husband and father of two sons. I own my own successful business and active in my community. In Dec 2014 my life changed! I thought I had a bladder infection…no big deal I just looked it up on the internet and saw they prescribe Cipro for that. 🙂 like a guy that hadn’t been to a doctor since he was 16 …it was no big deal. I ordered 500 mg tablets from an internet pharmacy…didn’t have time for Doctors…bad idea. My family was getting ready to go on a long trip and the day before we leave the cipro showed up in the mail. No big deal I took one pill and we left the next morning. I drove for about 9 hrs when I noticed my left arm was going numb …wtf am I having a heart attack? The last 2 hrs of that drive were scary. I didn’t want to alarm my wife and kids so I just kept driving. We got to our hotel and started to freak out I started to have anxiety ( never had this feeling before!!) we were getting ready to get on a cruise ship the next day, what can I do? Something just felt wrong don’t know how to explain it. Long story short. I got on ship and made it back home the whole time just didn’t feel right. About a week after I got home I woke up in the middle of the night with severe knee pain ( felt light they were locked) this is when stuff started down hill big time! I Got On The Internet !! That’s when I was sure I had poisoned myself. Now remember this is an active guy that hadn’t been to a dr in almost 30 years . I was embarrassed but I was scared so I was going to the dr. He said on 500 mg cipro would not hurt me. So. 3 blood test, one CT scan, another Dr, more blood tests and A Lot Of Time On Internet I was sure I was dying?! They found nothing wrong! I was driving myself crazy started getting harder to get up and go to work. I got to the point to where I could barely leave my house. I was having severe anxiety attacks…those things are scary! My new Dr diagnosed me with anxiety…put me on an SSRI, Xanax, and Ambian. Things kept getting worse, couldn’t eat couldn’t sleep loosing my business I ruined my life, I was going to die like this!?! My family and Dr they were worried, just keep taking medicine they said. I didn’t know what to do I was scared. Ok this is where it gets better…I started praying..i felt guilty I don’t really pray so why pray now idk I did, a lot. For 3 months during that time I could barely function but I just wanted to get better so I pushed on. So fast forward to April 2015 spring break, told my wife I can’t go they would have to go without me..she wasn’t having it (I’m sure she was worried I would kill myself while they were gone) I was going.! We spent a lot of money on plane tickets I wasn’t driving thought I would jut take a Xanax and make it to the hotel. Made it there and we decided I would stop all meds and keep myself busy…not easy but I did it and things slowly got better. Now I am not suggesting people stop there meds. I just never felt right taking all of this stuff. I just thought what changed? I drove myself crazy was sure I was dying and I put my body and mind under a tremendous amount of stress. I’m sure the side effects of the cipro had something to do with my situation but I think most of my ordeal was caused by me making it worse. I was caught in a downward spiral and didn’t know how to stop it. I has almost been a year and I am almost back to 95% of where I was physically but I will never be the same mentally. I don’t take any medicines Ambian is a bitch to get off by the way! I just want people that feel hopeless to know that there is hope, I am living proof. I am not the type of person that posts stuff on internet and probably never will again but something inside me felt I needed to this time. So. Stay off the internet!!! you can find any bad thing you want on there. Talk to people…amazing how many people have or have had anxiety. My family and friends were a huge help?..I went to a councilor with my wife and cleared a lot of things up with our marriage. And i truly believe that god let this happen to me for some reason…maybe to help you. God bless you! Doug
Doug, what an inspirational story! I am SO glad you are recovered.
Hi Charles, my story is a long one, but I will make it short and try to answer your questions. It was really, really bad at first – especially the first several months out with brain fog, neurological symptoms including anxiety, nerve pain, searching for words, poor fine motor, and then joint pain, spine pain, heaviness in legs, fatigue, insomnia. They were some very dark times, but I gradually got better. I say it took two years total to feel “normal” again, but many days in there were pretty darn good compared to the first months.
I did take Klonopin, but in many ways wish I hadn’t. Of course hindsight is 20/20, and I know I probably wouldn’t have been able to continue working. So…now I’ve been off everything except B12 since 2011. I was able to walk five miles a day, hike occasionally (live in TX, flat as heck, so have to travel!), lift weights, and get in the best physical shape of my life. My diet steadily improved (was a burrito eatin’, diet coke drinkin’ gal before Levaquin and even after….crazy I didn’t fix the diet right away).
Fast forward to this September, and I had a relapse. I started running in June (next logical step, right? Super Woman!), and I didn’t notice little symptoms like occasional insomnia and some numbness in my legs while running could possibly be a relapse. I didn’t know that relapses could occur. I went on a big hiking trip in September (23 miles over three days) and was very slow to heal the soreness, but I did. I returned and was in good shape and started running again (mind you, not marathon stuff, just 2 – 3 miles three times a week). I started having more numbness and insomnia, and then my health went really downhill. For a good part of the last two months, I was just getting to my lessons (I own my own tutoring business which was a light in my Levaquin recovery – I simplified my life considerably – even wrote a book about it!). I couldn’t believe it was happening AGAIN, but I knew what it was.
Since I have been reading a lot about nutrition the past year, I decided that I would see a doctor who believes in nutritional cures. I saw a cardiologist (he looked at me funny at first, but I told him that he was the only person I knew who cared about nutrition as a cure!), so he ran all kinds of tests. Everything came back within normal limits (just like my tests back in 2006/2007), so he put me on a four-week raw foods detox. I’m currently in week three and, just this past weekend, started to really turn a corner. I am on day 4 of “pretty darn good” and am only experiencing a little electrical stuff in the night and slight insomnia, but nothing I can’t deal with.
I am going to say that, this time, what helped me are: meditation/rest, detox/raw diet (which I love and plan to continue), a husband who believes me, and believing I will heal.
If there is anything else I can do to help you, please let me know!!!!
Tammy, you are just like Melanie. A few years of good recovery, then exercise triggered a relapse. Ruth says the same thing that being really active causes her insomnia. Seems similar with me. when I increase my activity my symptoms flare up more. Maybe there some sort of toxic component being released. You would think mitochondria disorders would not heal then be triggered again by exercise. From what I know you really have to work out hard to to trigger biogenesis. Just hiking would not do that. Seems maybe the activity just leaches more of this crap our of our bones/fat cells, etc..
Charles,
I have thought a lot about this– why sometimes exercise flares my symptoms and sometimes it does not.
I’m not 100% sure it does. I’m 100% sure drops in progesterone around the time of my monthly cycle do.
So here’s the thing. If I exercise very hard I do actually lose weight. It can happen quickly. Mark says weight loss is primarily through diet, but I’ve never had any luck with changing diet alone. I need to be active. Very active for as much time as possible. I lost 40 pounds in 2006 partly through diet, but mainly through being very active.
What if the times I had the insomnia a couple days following hard exercise were also times where my body let go of some fat stores? I never really lost much fat from floxing– just lean muscle. Now that I built that muscle back I weigh about the same thing I’ve weighed for several years now. (The weight I lost in 2006 came back.)
Suddenly, I feel better and I decide to get a tremendous workout hiking the bluffs. I feel more toned, almost like I actually burned some fat from that workout as well as toning up muscle. Bam! I have that horrible Cipro insomnia and everything’s burning two days later. But by the next day I feel fine again.
If I workout less hard or less long, no problems. Just long workouts or really hard workouts– the kind that would burn fat– cause problems.
Could the Cipro really be hiding out in my fat cells? Dr. Whitcomb would say no. Well, even with his big huge brain he doesn’t know everything. It sure seems weird to me.
But I hiked Devil’s Lake in July with no insomnia. However, I was in pretty good shape then from working fireworks.
My husband thinks I should just do mild to moderate consistent workouts and stay in shape the best I can, because then when I want to do something strenuous it won’t be such a strain on my body. Ok, that makes sense.
But what if it really is that when I let go of a bunch of fat cells I also liberate FQ’s that have somehow bound to my lipids? Is this crazy? I just don’t know.
No Cipro insomnia for 29 nights now. I’ve been exercising, but not strenuously. I’ve had my monthly cycle with no insomnia. It’s either the uridine Lisa suggested, or I’m just getting better.
Ruth
Tammi,
How do u keep going? My fears seem to be getting worse, not better. My children and family are so important to me but I am in such a dark place. It seems like everything is falling apart. Even leaving house to go to a doctor feels my head with fear.
Traci
Hi Traci, that is a good question. My family history is very positive for depression and anxiety. I had high anxiety especially during my original floxing in 2006. I know that depression lurks right around the corner when you have high anxiety, so I really kept myself in contact with positive people. I also read a lot. Albert Ellis books really helped me. This time around, during my recent relapse, I meditated every morning. I googled free meditations (fragrantheart.com is the site I’m currently using). I don’t have a smart phone, and I limited myself to my laptop. I didn’t check emails, etc. until after my meditation and a short morning walk through my apartment complex I didn’t do TV or laptop after work. A couple of weeks ago, I was pretty anxious even after meditating, but I forced myself out of the house at least once a day and pasted a smile on my face, looked at the trees, and tried to find some squirrels. I took an afternoon nap and was able to get out to work (I run my own tutoring business, so I work late afternoon/evenings). Midday I try to get out and stroll about, even for 10 minutes, to get vitamin D. I remember wanting to slap a friend of mine when I was sick in 2006 and she told me to get out for a Vitamin D walk. I wish I’d listened because I may have recovered faster. I refuse to let anyone (even myself!) stress me out. I know it’s the Levaquin that did it, and I keep telling myself, “That’s not me. Breathe. That’s not me. Breathe.” Breathing helps and so does allowing my husband to make me laugh. I get really antsy and anxious when I am hurting, so it’s hard to think someone isn’t trying to bug me, but when I realized he just loves me and wants to see me smile again, I let my guard down and have a chuckle. We have sooooo much power to heal. I believe that. I believe that I can and will heal.
Traci,
You can get coconut oil at your grocery store. It’s near the popcorn where I shop. Also, some health food places or stores that sell supplements, like GNC, tend to have it. My neighbor Dick is a retired biologist, and he was always going on about coconut oil, so I had some around before I got floxed. I used it to make popcorn.
It’s not the worst thing you could add to your diet. There have been some studies on patients with dementia showing that the medium chain fatty acids in coconut oil can be helpful for them. Sometimes their brains aren’t processing glucose properly, but can still use medium chain fatty acids.
Just be careful if you try swishing it in your mouth. If you accidentally inhale it you will have a lot bigger problems than floxing or thrush on your hands. Lipid pneumonia is very hard to treat.
Same thing with me. I was floxed in June last year. I started felling better by November. In the winter I started shoveling snow. I even got on the roof once to put a sreen on the chimney. Istarted going downhill fast and today it seems like every nerve in my body is trying to kill me. I’m afraid to take anything for pain. If I didn’t have a lot of freedom and can work from home I would have been fired long ago. My legs and feet got hit hard. i haven’t heard anyone say they recovered from that yet. I still have to believe i will recover. If I did not believe that I think I would go crazy.
Has anyone tried “product b” from Isagenix. It stimulates the production of telomerase (I hope I spelled that right) that prevents the telomeres in you chromosomes from getting shorter whent they duplicate which causes aging and general cell deterioration. obviously something is happening to us that they don’t test for. The very process of cell reproduction and energy production is being interfered with. Sometimes I thing the best reatment should be to lay on a beach for 2 years with big pharma paying for it.
Im so tired now. Like soul tired..not sleepy tired. I dont see any hope at all. Its all been taken away from me the longer this goes on.
So many people have been so kind to me and I thank you all.
I think ive come to the end if my road. And im ok with it now.
Thanks you everyone and I wish each and everyone a good recovery and better days
Dear Melanie,
You poor soul. I feel for you. It’s easy to say from where I sit, mostly recovered, that things could get better for you. I still think with time they could. Don’t do anything drastic, please. If you think you might, please seek help.
One of the symptoms of this is some very dark, depressing thinking. These drugs come right from hell, and nothing your heart tells you is true so long as you are suffering from their effects.
You are absolutely in the valley of the shadow of death. From where you are you can’t see anything better, but faith is the evidence of things not seen. Have faith.
Maybe you won’t heal in this life, but St. Paul says that if our earthly tent is destroyed we have another dwelling in heaven, not made with human hands. Jesus said, “In this life you will have trouble. But do not be afraid, I have overcome the world.”
When you can’t hang on one more minute, remember the One who hung on for you, hung on the cross and wouldn’t let go because He wouldn’t let go of you. He went where you are right now, when He didn’t have to, so you wouldn’t be there eternally. Eyes have not seen, ear has not heard what God has prepared for those who love Him.
Give up trying different things to get well, sure. Give up on doctors– I get that. But don’t give up and take your own life. Sorry if that isn’t what you were saying, but suicidal thoughts are definitely a side effect of those horrible drugs and I have to assume the worst and speak against that option.
I don’t believe that all suicides go to hell. But I wouldn’t bet my salvation on it.
I’m praying very hard for you.
Ruth
Traci, Last time around, I was alone a lot because my husband worked during the day. I often had to leave work early, so I would sit and worry about what I couldn’t get done at school. I was a literacy coach and the state test was coming up, and I was supposed to coordinate it for the elementary school. Well, I wasn’t really able to do that! So…my assistant principal and the intervention specialist did it. I didn’t lose my job. They knew me before it happened and knew the “new Tammy” was not in any way, shape, or form the girl they knew before. I did work for another year and a half until I started my own tutoring business. It was much less time and stress (and money!). But, it ended up that it worked out for the best because it made me really simplify my life and gave me a chance to work with my husband (he teaches guitar out of the same office). We rebuilt our lives into much happier and healthier lives.
Social anxiety has reared its head from time to time. I used to be very extroverted and now I prefer to be alone or with very few people. I found that to be positive too because I wasn’t always running around trying to save everyone anymore. I haven’t done anything socially in two months, but I plan to go to my book club in a couple of weeks. I remember the last time it happened I was gone from them for a long time. When I returned, I just rested in a chair, participated when I could, and left when I got tired. They understood. I do get nervous if I talk a lot or interact with really intense people, so I try to keep it low-key.
It helps me to walk around near my apartment. I don’t really know anyone by name and usually just interact with them with an occasional ‘hello’, so it helps me to get over that anxiety to look at them, smile, and say hello. Most people are surprised because they’re used to rushing around life, always in a hurry. Not me anymore…and it’s for the better.