*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.
BW, I have recovered from this twice. I wasn’t floxed twice, but after my initial recovery I had another relapse from which I am now recovering. Many of us have felt what you’re feeling, so I hope that you can find some support here that works for you.
If you feel like emailing with me, my email is tamrenzi@gmail.com I don’t have any magic answers, but I would be happy to support you.
Im pretty much a dead man. Im a hemophiliac as well an prob should of never even been given cipro in the first place. I can tell now that my platelets r even more screwed up bc the cyst I had removed two mths ago has still not healed an it def should of by now. My gums r red an sore to ever since this started and I had a seizure like 10 yrs ago so im just waiting for those to kick in which im sure will hapn in the following mths. Im genuinely discussed at thos govt for allowing a drug like this to be prescribed so freely, I wasnt given one warning about the side effects an the dr knew I was a hemophiliac with joint probs. At this point Im almost praying for organ failure so I dont have to live like this anymore. Everyday its something else. Sorry to be negative I know this is an inspirational website but I am seriously so screwed. And all thw forms of treatment h202, glutathione an oxygen therapy I just found out are all blood thinners so with my condition that leaves me with 0 options at this point. I would of been better off coming down with just about any other condition besides this one.
BW, keep in mind the first few months are usually very bad for many. I wanted to eat a gun on many occasions. Some of this is situational depression caused by the total shock of this illness and the fact your life has been turned on it’s ear, the other is actual chemical imbalances in your brain caused by the actual toxicity of the drugs. Hang in there, for many the depression and anxiety does get better. Don’t 100% rely on the idea that you have to pump tons of supplements into your body to survive. Some supplements can help, some make things worse, and many have recovered (some severe cases) with just the passage of time and good diet. I for one do not take many supplements at all. I have tried many, and for me, most seem to do nothing, or make things worse, so I avoid most of them. I have had some good improvements over 10 months, but I am no where near recovered, but past the “I want to die” at all times phase. Give it some time and just try to ride the wave as best you can. Most people do recover, but for many it’s 18 to 36 months before you really reach functional recovery. The ones that recover within 6 months to a year are very lucky ones, and I would not expect to base your recovery on that. Also it’s not linear, you can have a great month or two have have good recovery, then wham, out of nowhere you have a relapse for some unknown reason. That is why so many point to the mitochondrial, or toxicity theories.
BW.Charles is right.
You dont always have to take anything to recover.When I was floxed in 2010 I took nothing.I didnt know what happened to me so didnt have a clue.I came through it but I can tell you the early days are horrendous and suicide is foremost on youre mind every minute of every day.I was severley floxed but recovered inside of a year .
Im having a relapse after 3.5 years and its just as bad with some added symptoms. Im at month 6 now and its so far not letting up.Im bedridden most days. The people on here keep me going because im having those same thoughts of suicide.Im not sure if ill get through this again or if ill get through it as quickly as I did last time.Its frightening for sure but as Charles said…its not linear. ..its a waiting game and thats the hardest game of all..But just so you know.You dont have to take all kinds if remedies to get well.Im very limited on things I can safely take so I choose for the most part to just try and eat right and drink plenty of water.
Thank u guys. I only just found out about this a few wks ago even tho I was hospitalized a few times in agony from back pain and stomach issues an every dr knew I had taken cipro n not dr made any mention of that’s what it could possibly be. Like I said this past wknd I had just now been able to watch tv and understand it an also laughter is coming back only on some days. Its just awful I feel like someone took my soul and whats left is somebody who I dont know anymore. Even through the hemophilia ive always been rly healthy, gym person, never tired an slept relatively well. Ive gone from thay to now chain smoking a pack of cigarettes a day bc its the only thing that seems to calm me down, although since I am now a member of “floxed” ppl lol I suppose ill have to cut that soon enough to. My maim concern besides my brain going back to the person I used to be is wether or not ill ever be able to take medicines again? Has anyone had reactions to normally well tolerated meds to which they couldn’t take but then were able to again? Everything effects me poorly, esp pain meds. Im able to walk, im no bed ridden just cracking a lot n I always have cold achilles an calves, an some muscle spasms. Im also concerned about my teeth, I have a wisdom tooth coming in an at some point its gonna become infected again, then what am I supposed to do without the use of antibiotics? I feel as if I am living an absolute nightmare an no matter what I do I can not wake up. If I could just get my personality an happiness and sleep back I swear I wouldn’t even care if I wound up in a wheel chair for life, its that depression/anxiety/sleeplessness that gets me. I have never been so sad in my 30 yrs on this planet. Is anybody able to drink alcohol anymore or am I saying goodbye to that ship to? Its so devastating its almost comical at this point. All this for a cyst I had removed n was given cipro as a preventative for infection. At this point id take 10 infections over whats hapnd to me.
The most bizarre thing about this is doctors either have no idea of the damage this drug is capable of or don’t want to know, which makes it hard to get help. I had one doctor basically invite me to leave his office when I told him about the cipro damage. i had a neurologist tell me what I had was probably caused by something else, even tho my body exploded on the 5th day of taking the drug. The medical industry is held hostage by big pharma. Find a good functional medicine doc or naturopath that understands how to safely detox you and minimize the oxidative damage. Take GABA to mellow you out for now. YOU WILL GET BETTER.
I just had a twitter exchange with Suzy Cohen (http://suzycohen.com/) where she mentioned that she was giving her floxed husband Kava to help his GABA-A receptors. Here is what a floxie noted on one of the boards about Kava:
“I thought I’d share one thing that has seemed to help me some and that I wish I had tried a long time ago. I’ve been take Kava Root Extract for about the last year. I had read about it when I first got floxed, but quit looking into it when I saw all the liver warnings. About a year ago I decided to do a little more research, and it turns out that if you take the pure Kava Root powder that is only the root without any trace of stems or leaves, there’s really no risk at all. It helps greatly with anxiety, insomnia, blood pressure, and many other things. It tastes horrible, but it basically has the same effect as xanax, but without risk of addiction.”
I’ve never tried Kava – despite having a bag of it in my pantry. It may be worth a try. Certainly, it is worth trying before turning to benzos.
Lisa, I would be wary of KAVA since it acts on the GABAA receptors in a very similar MOA to Benzodiazipines. It’s contraindicated for use in someone suffering from PAWS since it can down regulate GABA receptors like Benzo’s can. But just like a benzo, it can have quite good effects on calming down the CNS issues related to flexing just like a benzo can, but it could actually prolong the healing of the CNS.
I would recommend more research into this subject.
So suzy cohen’s husband is flexed. I would expect this would be all over the media??
I didnt know who she was…looked her up…how did you hear about her husband
Hi everyone. I had some questions. When I first got sick it was just gi issues I also want to mention that I had been given a wks worth of amox about a wk after my cipro ended bc my tooth got infected. I was hospitalized bc of the stomach and back issues an was given vancomycin bc they assumed I had c dif. I only took ot for a day bc the results came up negative but I noticed the balance issues an ear ringing stated that night after the vanco. I also was given two seperate ct scans with contrast on two dif occasions of course but I noticed both times I felt considerably worse. Is it possible I had like a mild reaction to the cipro an then I basically floxed myself unknowingly with all of these treatments? Im so confused and rly in bad shape I just dont get this at all. My family knows im sick as does my fiance but I feel like everyone is like looking at me like get better already an id like to think of myself as a strong person but its just so horrible I cant even function rt now. Im going to be switching to only organic meats veggies/fruits an cut bread out of the picture an I guess we’ll see if that makes a dif. I also noticed in the hosp when they gave me pain meds or any other meds I got much worse to. Does this make sense to anyone. An am I going to be an organic veggie eater for life? I only ask bc its just so not me, not that I dont think its a healthy good way to live its just expensive an a pain in the ass for the ppl who are currently providing for me seeing as I cant do anything for myself.
BW..how long since floxed?? Sorry if youve already said.
when I first got floxed in 2010 I took several other antibiotics plus prednisone and NSAIDS.
I still recovered.
Im so sensitive to meds they kept giving me different ones to see what id be ok with..inly could ever take 1-2 of anything..I also had surgery..so anesthesia on top of all that.
So I was pretty much a walking pharmacy.
I was sicj as anything..bedridden..housebound but I recovered. Yes its a lot on the people around you taking care of you but they love you.
Its so out of our control.
Hi BW,
I can’t really speak to the medications because I try not to take anything, but I do (now) eat a very healthy diet. When I was first floxed back in 2006, I didn’t even think not to eat meat because of the antibiotics. I continued to drink Diet Coke. I continued to eat meaty, cheesy foods. But, the healthier my diet became, the better I felt. Was it just that I was healing and would have despite diet? Maybe. But since then (this year actually) I’ve read The China Study and realized that meat and animal products really don’t have much of a place in my life if I want to stay away from those things that are killing most Americans (heart disease, cancer, diabetes). I want to live a long, healthy life and now am basically a plant eater. I can’t afford all organic produce, so I just get organic apples once in a while. Everything else is not organic. I’m going through a relapse right now, but I do think I feel better overall when I am eating this way. I do hope to have a beer down the road, though! Hope you find some things that work for you!
BW, This drug causes a terrible mental stress, especially at first. When I was first floxed I couldn’t accept that I was going to be down for awhile but I had no choice. I found that I could not tolerate any pain killers, or other drugs for that matter. My body could not detox them fast enough. I am still avoiding red meat and dairy after 17 months as I don’t seem to be able to tolerate it. I hope to be able to eat it again though. You will be sick for awhile and the less stress you put on your GI and elimination systems the better.
This might be of interest to those thinking about testing and maybe supplementing hormones:
https://www.google.at/url?sa=t&source=web&rct=j&ei=vyNbVOOkOuSu7AbProCACg&url=http://www.sportsmed.org/apps/aossm_2013/files/Poster_37.pdf&ved=0CCAQFjAC&usg=AFQjCNEVtIYi-Wx9mivOClQAaVP2qd9MrQ
Also from my own research moderate doses of testosterone does increase collgane synthesis.
HGH does so dose dependent which means the more you inject the more collagen type 1, 2 and 3 is turned over and renewed.
If I was more than a year out and still suffering I’d measure my total and free testosterone and take the lowest dose possible of TRT in conjunction with HGH.
If any of you is going for it please let me know.
Mark
Melanie its been two months. Depression, anxiety an insomnia seem to be fading at least on some days. So im hoping that’s a good sign. I was curious to ask about how any of u have done with novacaine at the dentist. I have a wisdom tooth that needs to come out sooner then later bc I def dont want it to get infected again n then would be subjected to more antibiotics. Do I have to worry about having a reaction to the novacaine? The last thing I wanna do right now is have a tooth pulled but if it gets infected again im gonna be screwed lol. Also has anyone’s tinitus gone away, its maddening! Also, after years from now will I be able to take pharmaceuticals again if I need them, not that im a fan of meds considering this friggin antibiotic has destroyed me but its def a concern of mine. Im only 30 might need some meds in the future. Also, has anyone had any success with wheat grass?
If I was gonna go crazy like some of the videos ive unfortunately watched, would that have happened by now, or is it possible to have that progress?
BW the hard reality is that no one really knows. Some people have an acute attack and slowly get better without relapses, some start out mild and progressively get worse, some cycle up and down and trend up or down over time. It’s really individual . Until we know what really is causing the issues, it’s a guessing game for all of us.
I hope you don’t mind if I jump in and try to answer, Carol. A receptor is the lock, a substance it responds to is the key. This all happens very, very fast, with substances “opening” receptors. If the body perceives there is too much of a substance, such as GABA, it will deactivate, or prune back, some of those receptors. This is why things like Benzo’s and SSRI’s don’t keep working as well at the same dose. The body adapts. When the substance is gone or reduced, the body must adapt again by reactivating receptors, and this takes time. GABA-a receptors seem to take a long time to come back. If you take GABA, a Benzo or drink alcohol you may feel better as more “keys” activate more “locks”, but you run the risk that the body will adapt to this level of stimulation of those receptors and pull some back. You just went backwards in your recovery, but you got temporary relief.
Substances that don’t activate GABA receptors are probably better for us. Rhodiola Rosea is safe to take for anxiety in that respect. Uridine has its own receptors in the brain. It’s affinity for GABA receptors is weak enough that it is probably safe. It can raise GABA levels, but the fact is, we do need some GABA. Too much is bad, but so is too little. Uridine seems to be working for me.
Progesterone is a puzzle to me. It’s when progesterone drops that changes occur to GABA receptors. Every month this happens to me because of my monthly cycle, and it sucks. But the moment progesterone levels rise during my cycle, I feel great. So the presence of progesterone must be able to upgrade GABA receptors very quickly. I am on low dose HRT for progesterone. Dr. Whitcomb thought it would help upgrade my GABA receptors if my progesterone levels came up nearer my estrogen levels during the appropriate part of my cycle each month.
So we should take progesterone and be cured, right? It doesn’t look like it.
Progesterone has been shown to be useless for helping those going through protracted Benzo withdrawal. So if it didn’t help them it won’t help us. We both have down graded GABA-a receptors. It can also cause cancer. Lowest dose possible, only if needed, for a short time is the only safe way to take progesterone. But I’m interested in that it may behave differently than other substances that interact with GABA receptors.
How Cipro did as much damage to my GABA receptors as years of Benzo’s at a high dose is also a mystery. I’m thinking the huge loss of magnesium due to the chelating effects of Cipro had something to do with it. Maybe magnesium protects receptors. Maybe everybody going through Benzo withdrawal was magnesium deficient, and that’s why some people stop taking Benzo’s with no problems. I took Ambien before for sleep issues with no trouble stopping it. But Cipro just devastated my autonomic nervous system in only seven pills. It’s method of downgrading receptors appears similar to that of benzodiazepines, but it can’t be completely the same since it happens so quickly. Sometimes people take one Cipro and have immediate CNS damage.
I think given enough magnesium the body can heal. Magnesium threonate helped me the most, but I can’t take it in the evening or I don’t sleep. However, once I added that form of magnesium my CNS healed a lot, very quickly. I just felt more normal.
So I would suggest things that don’t interact with GABA, like uridine, Rhodiola Rosea or L-Theanine. ( L-Theanine raises dopamine and serotonin and blocks glutamate, which is excitatory. ) Also magnesium threonate seems to help to replace lost intra cellular magnesium, which I believe is critical to healing.
I was just researching GABA-a receptors and Theanine was included in a list of substances with an affinity for those receptors. So it does have an effect on GABA-a receptors, but I’ve been taking it andvhave been recovering steadily. I stopped taking it because as I got well it made me a little too mellow. I still take it to combat PMS. I personally don’t feel it hampered my recovery. Dr. Whitcomb recommended it as something that would not interfere with upgrading my GABA receptors. So I was surprised to see it just now in that list.
I think we can end up terrified to take anything that acts on GABA receptors at all, but there’s a world of difference between uridine and Theanine and taking a Benzo. Personally, I feel Benzo’s are bad news, but not every substance with a weak affinity for GABA receptors is necessarily something we need to fear.