*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.
-
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.
-
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.
-
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.
-
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.
Hello everyone….. i was recently floxed on Oct 30 ,2014 ….feeling fine after Levaquin, but 4 days later I took one Bayer for back pain…and hours later my physical and mental health were spiraling out of control!! The first two weeks I could barely drive….I was confused, couldn’t sleep, panicky, had suicidal thoughts, and felt totally brain damaged. Luckily the mental part has subsided, but I have a lot of PN, and some eye floaters. At this point I’m still fully functional…. have been taking magnesium plus many other supplements,Epsom salt baths, acupuncture….and eat all organic meat and produce. I really appreciate this website….I like hearing all these success and recovery stories. I’m too afraid to read the horror stories…..but I have faith I will eventually get better like most of you have on this blog. Has anyone tried ozone therapy??? I have a consult on wed….I want to try it but its really expensive!!! These past couple of weeks I already spent so much money on holistic drs and supplements…and this is only the beginning!!! Any info any of you have would be greatly appreciated!! Thanks! Tricia
Tricia,
I take hyaluronic acid for eye floaters. I was taking it before Cipro and it seems to work.
I never did ozone therapy and am mostly recovered. Personally, I would see how it goes before spending that much money.
From a research article I just read they found evidence that these two things work: supplemental magnesium and vitamin E. They did not find that things people try, like glutathione IV’s, actually improved tendons/cartilage post Cipro. However, there is a lot of anecdotal evidence that things like ozone and IV’s help people.
If you are basically functional I would stick with magnesium supplementation including topical and magnesium threonate. (Take less than the full dose and only in the morning with the threonate. They pair it with a stimulating metabolite, but it targets the mitochondria.) For me I saw rapid CNS healing after adding it. I can’t prove it was that, but I believe supplements that target the mitochondria help us since our mitochondria are harmed by FQ’s.
I also would get on MitoQ, a targeted CoQ10, also mentioned in that research study as having a beneficial effect against FQ damage. Vitamin C is also good because tendons need it to heal.
When first floxed I wanted a magic bullet, but there probably isn’t one, especially for a damaged nervous system. Things might get worse before they get better, but that doesn’t mean you will not heal.
I will warn you that some floxies who did exactly what I did to recover got much, much worse with dramatic relapses lasting for months. A damaged CNS can cause paradoxical responses to supplements. Almost anything you do can make you worse. Time seems to be the only thing that helps for some people.
But for me magnesium and targeted antioxidants really helped. You just have to decide what to try to do. Ozone has its own risks, I’m sure. If you’re doing pretty well you might not want to add it, but you will have to see what they say when you have your consult.
how did you deal with working and visual issues lisa? my vision is kinda off…. also did you lose and regain muscle in legs
Thanks Ruth….I will try the magnesium and pair it with the vitamin E 🙂 I held off with the ozone treatment for now. I’m just going to supplement, rest, and detox for now….and hope for a miracle! I’m glad you recovered in less than a year! I wish I can look into a crystal ball and see my life 2 years from now. Hopefully I will still be walking and have all my teeth and hair!! This is scary but I’m thankful for all these posts, and I hope that there are many more people who recover from this…who just didn’t have time yet to post their stories. Thanks again , Tricia
Thanks Lisa for this website. When I got floxed last month, the first 2 weeks I felt like I was literally going insane. I was confused , could barely drive or see, couldn’t remember anything, and was seriously contemplating suicide. Your particular story was the only thing that gave me any hope, and it was similar to mine. I was poisoned too, from 2 pills of cipro and one levaquin…. 500 mg for a uti that was so minor!!! Anyway, I can’t chang the past. I’m just happy I have my mental state back..and I hope that part doesn’t change! I know everyone’s experience and time line with FQ is different, and as scary as this is, and totally not what I would have chosen for myself…. I do think that somehow, someday, something beautiful will come from this 🙂 thanks again Lisa, for giving us all some hope and faith! Tricia
Tricia,
The optimal dose on vitamin E is 400 mg a day. Did you buy that e-book on Levaquin Tendonitis? Lisa just did a post on it on this site. If you buy it through Lisa it’s the same price for you but she gets a commission. I bought it and found it helpful.
They have rewritten it, so I hope they deal more with the CNS issues. I am not 100% healed as far as my CNS is concerned. But my remaining symptoms are mild and seem to be going away. Uridine helps around that time of the month. When progesterone drops the end result is your GABA receptors become less sensitive. PMS is a real thing! It’s just a lot worse for floxies with CNS damage. Uridine has its own receptors in the brain but has similar effects as GABA so it can bypass the downgraded GABA receptors and let you get some sleep.
I think you did right to wait on the ozone thing. If things get worse you can still do it, and you’re saving your big gun in case you really need it. You may find time and giving your body what it needs to heal are all you need.
I still think the targeted supplements like MitoQ and mag threonate are vital, but again, other floxies have not responded as well to them. I feel confident that those things are a big part of the reason I healed as quickly as I did.
Thanks Ruth for all the good info! I will buy the things you mentioned today. I’ve been taking magnesium but will switch to a better kind, camu camu powder, e matrixx, SamE, ppq, lots of raw organic green drinks too. One thing that helped tremendously was pharma gaba, its all natural and that immediately helped w suicidal thoughts, panic, and at least I can sleep 7 hoursstraight. Lots of the burning, pins and needle sensations seem to have left, my GI issues are much better, weight stabilized too. Now I’m mostly fatigued, achy joints and bones that come and go. Monday was my first day back to work since being floxed, I work as a hairstylist and was so worried my body would fall apart. It was painful, but going back in the world made me feel better physically and mentally. It seems staying at home all day I tend to feel worse, and very depressed! Next week I have a phone consul w Dr. Jess Armine. i saw him on a show w Erin Wilson and he does indivualized medicine, genetic testing, and really working on getting gut flora back in balance. So, I will definitely let you know how that goes! Take care 🙂
Tricia,
I would stop supplementing GABA if you can because you run the risk of further downgrading receptors for GABA.
I took L-Theanine, which does bind to GABA receptors, but it also blocks glutamate and raises dopamine. Dr. Whitcomb recommended it. It did not seem to slow my recovery in any way, and was very helpful in calming anxiety and promoting sleep. I take it infrequently now, and had no trouble discontinuing it. Between that and the CalmPRT he recommended I started to feel way too mellowed out as I recovered. That just isn’t me. I didn’t like feeling agitated all the time, but I don’t really want to feel super relaxed every minute either.
CalmPRT has Rhodiola Rosea in it and some precursors to GABA. Dr. Whitcomb said it’s ok to ensure you have enough GABA, but he said not to directly supplement GABA for the reasons I stated above. Good product, but very expensive. Probably better to see if you can avoid needing it. But when I was really, really suffering all the classic Benzo withdrawal type symptoms it helped. It didn’t make the pain go away, but it made me not care about it. Couldn’t get anything done while taking it, but it made life bearable. Probably best not to drive while taking it.
Uridine is also a good alternative, one Lisa tried, because although it has a very weak effect on GABA receptors and can raise blood levels of GABA if they are low, it’s primary mechanism of action is through entirely different receptors in your brain. I take 500 mg with fish oil at bedtime. I’ve gotten a decent night’s sleep over 40 nights in a row now. Uridine does not make me sleepy and it does not have a noticeable effect on any other symptoms, but if I take it before bed I sleep, even if I started out having the killer Cipro induced insomnia,wherein falling asleep flares symptoms and wakes me up. Two uridine and it’s stopped within a half an hour and I sleep normally.
I too get depressed if I’m not doing much. Staying as active as you are able seems to help, so long as you don’t overdo it. Being productive helps. I might have had a crappy day as far as symptoms go, but I measure how my day went by what I accomplished instead. If you don’t accomplish anything you are left with just a crappy day.
Getting your gut flora in balance will help. I’ve been drinking a little cup of Kefir every morning. I never had really bad gut issues, but I think you can have issues with gut flora and not know it. You don’t have to be having constant diarrhea to have your microbiome actually be out of whack.
Good luck to you! I’m sure you are going to make a full recovery, or at least to the point that you can live your life as you want to. I am at that point now, and do not feel limited anymore. In some ways I’m doing better because I’m taking better care of myself now. Some of what I attributed to middle age was definitely not normal, it was actually poor nutrition coupled with super hard workout sessions to burn off the junk food I ate. In a way Cipro saved my life because it derailed that “binge on sweets then work out like crazy” train I was on.
Ruth
Thanks Ruth….I will definitely try to stop gaba then and replace w l theanine. Today has been really rough…my 4 year old daughter was sick a couple days ago, now I have a sore throat, flu like symptoms….which I HOPE is from her, and not FQ toxicity! It seems things may have to get significantly worse before I get better. It seems like that is the cast w most FQ toxicity recoveries. What are the chances of recovering? Even if I can’t do all the things I once did, but was able to have energy again and be happy for my 4 year old….I would take it!! I just wish I knew, for certain, that I would be okay eventually. The scariest thing here is not knowing….and I try not to think about all the terrible stories I read, but can’t help it sometimes. Tricia
Hi Tricia
I recovered once. Took me I think about 6 months to be able to work again. And be functional. Took around 18 months for most everything to go. I still always had a few minor things but they where totally forgettable. Nobody knows time lines or how you will do. Its all very individual but you are seeing some results so youre chances are good.
Ruth, i forget how much cipro did you take?
Ruth, What is the effect of the uridine? I bought the Levaquine Tendonitis e book back about a month after I was floxed. I found it very useful especially for the Ice massage which unfortunately I still need to do but it helped alot with pain and muscle healing.
I have faith that you are right Ruth! We live in Madison, so going to devil’s lake w my daughter is always fun. I hope this summer I will be swimming and hiking w her, symptom free! Thanks again for the great info. Is mitoq the same thing as mitochondrial energy optimizer with bio ppq? I got it from the vitamin shop, bran name is life extension. I think I am sick from my daughter, I have flu symptoms, sore throat, mild fever. So I hope I will feel better tmrw! I’ve also been makingvbone broth soup….so I hope these little things add up to something big. Tricia
Tricia,
I have those same pills from Life Extension, but that’s not MitoQ. MitoQ is the brand name of a targeted CoQ10 made in New Zealand. Just google it and you’ll find it. It’s pricey but I feel it is worth it. Antioxidants don’t reach the mitochondria easily after your mito are damaged. Our mito are kind of protected, sort of like the blood brain barrier protects our brains. You need a targeted antioxidant to reach the mitochondria. PQQ stimulates new mitochondria to form in aging cells. MitoQ will kill off damaged cells so they can’t reproduce, producing more damaged cells. Damaged cells increase oxidative stress and this leads to more damaged cells. Things like MitoQ and PQQ can really help stop that cycle of destruction. Seems to have worked for me.
That’s so cool you live in Madison. I’m in the Milwaukee area. I’ve worked in Madison when I was working as a PTA for a medical staffing company.
When you are well next summer we will go to Devil’s Lake and you will swim and hike. Hold onto that thought. That’s how I got well. But even more for me it was the Wisconsin River. I kept picturing being able to go there again, to walk around on sand bars and paddle a canoe. It seemed more doable, more possible. I was surprised when I was actually able to get up a bluff too.
I grew up in that area and did my first two years of college in Baraboo. If “Goofing Off at Devil’s Lake” were a college major I would have been valedictorian of my class at Boo-U.
http://www.mitoq.com/mitoq-5mg-capsules-60.html/s this it Ruth
Sorry Ruth it didnt show up on the link but once u click the link and then click shop now it shows the product. Is that the mitoq you are talking about
Melanie,
That’s the stuff. You should know that Charles had a three month relapse after taking it. Absolutely anything a Floxie tries carries a risk, a much greater risk than would be there for other people.
That being said, I do think supplements targeted to the mitochondria are our best hope. The problem is that floxed bodies can respond poorly to the very things they need in order to heal, magnesium being the main one.
My personal theory is that we feel the worst when we are doing the most healing, and this does not necessarily happen in response to anything we did. Our body just tackles the damage at that particular time and then we feel it as repairs are being made. This may be true of both you and Charles.
When I was first floxed magnesium made me much, much worse but I kept pushing it anyway in any form, by any method I could, because I believed the only way back to health was to saturate myself with magnesium. There were a few times I had to stop it for a day or two because any amount in any form was raising my blood pressure to dangerous levels. Otherwise, I kept taking it as it flared my anxiety, made half my body go numb, made my heart race and pound in my chest, raised my blood pressure and just generally made me feel miserable. I just kept pushing it and held on waiting for the day I would heal enough to tolerate it normally. For the most part, that day is here. Once in awhile my heart will flutter for a bit after taking it, but not for long and not very hard. It can make the right side of my face feel slightly numb or have a feeling of slight pressure, tightness or a pulling across my nose. It can cause a very slight increase in anxiety. Seldom does it make me sleepy, as the amount of magnesium I take should, but now and then I do have a completely normal reaction to it. This is happening more and more often.
Had I stopped trying to put magnesium back into my body, I would have suffered a lot less and had fewer trips to the ER. However, I would not be as strong now and I doubt my CNS would have healed as much. It couldn’t tolerate it but it couldn’t heal without it, which is this horrible paradox floxies face.
At least if I backed off on magnesium I felt immediately better, as soon as my body cleared it. I could get a respite. What you and Charles have described are long term relapses from supplements.
Is that also from the body actually working hard to heal itself having been given what it needs to do so? Is that from intolerance to the supplement as I had to magnesium? Is it real damage having been done so that it is actually a set back? Or is it a complete coincidence?
I have no idea. MitoQ could be the thing that finally gives you healing, because it targets the mitochondria. Or it could lay you flat on your back for three months. I wish we knew.
Thanks Ruth! I did order the mitoq on line this morning, so hopefully that will help! Its funny, when I first got floxed my feet and calves hurt so bad…. I was in constant pain and thought I needed a wheel chair. Now, all the pain moved up to my hips and and neck.so far its not unbearable, but its always there. I guess everyday is a new day for a floxie! Have a wonderful Thanksgiving!! 🙂
Yes, every day is a new day. For me I see to have had the best healing by eating fermented foods and hcl. but I don’t know for sure. My coq10 and pqq relapses were both also close to other things, like paint fumes one day, and coffee on another. I also took coq10 for 2 months in Feb/Mar and that was also when I was doing all kinds of IV’s etc. I also felt horrible during that time. i quit everything in April and May and felt ok, (not healed, but not dying either) then in June I tried a coq10(same bottle i had been using in Feb/Mar) and a day later after 2 pills, I had the replace of all relapse, it was the worst experience I have had to date. I was begging to die. Worst pain and neuropathy I could have imagined. That continued for a few days and tapered off, and I did not leave my bed room until July to go to Progressive Med Center in Atlanta. they tried a bunch of stuff and I got sick again, so I came back home and did nothing until mid august and started eatiing fermented veggies and HCL Within about 3 weeks I was waking, my GI system was much better, I was sleeping, my tinnitus was down, anxiety was gone completely and was about 60%. That lasted for about 6 weeks and now I back down again, but not as bad as before. I quit my supplement program because I had horrible stomach pain about 4 weeks ago that forced me to stop eating for a week. trying to restart that program now. Also have been inform that my detox pathways are shot and not working, so any supplements I take, my body may not be able to clear/utilize them properly.
Wow…I’m sorry to hear that! How many months out are you after being floxed? And did you start supplementing right away (like magnesium)/after you got floxed? I have a consult w a Dr in Pennsylvania, who knows a lot about FQ toxicity. He’s a huge believer in getting the gut flora back in health, like cutting out all grains, alcohol, coffee, sugar, soy. That’s what I’m trying to do. I’m only a month out, so I have no idea what my future holds at this point……I just want to heal…..and quickly! the first 2 weeks I had eye floaters, tinnitus, and horrific psychological stuff. That was scary!! If i can maintain my mental health, vision, teeth, skin and hair throughout all this….I’d consider myself blessed