FQ Antibiotics and Memory

One of my symptoms of fluoroquinolone toxicity was memory loss. For a while, I lost my short-term memory, and I struggled to remember basic information and tasks. I also felt as if I lost my reading comprehension, and I struggled to remember what I had read shortly after I read it. Completing work-tasks that had previously been easy was suddenly difficult, and I struggled to do my job.

I felt stupid and incapable, and I worried that I now WAS stupid and incapable.

It was horrible. The loss of mental capacity was the most worrying and anxiety-inducing symptom of fluoroquinolone toxicity that I experienced. I was worried about my body–going from being able to do Cross-Fit to barely being able to walk was scary–but I was more worried about my mind. I could cope with not being fit, but I couldn’t deal with being stupid. And I felt stupid.

Over time, my memory and reading comprehension improved. The post, Healing my Brain After Cipro, lists the things that helped me. I am now able to function mentally. My memory and reading comprehension are adequate enough to do my job, and I don’t think that I come off as a total nitwit when I converse with people.

I still worry a bit about my mental capacity though. So much time has passed since I took Cipro–I got floxed 6 years ago, at the end of 2011–that it is difficult to tell how much of my perceived reduced mental capacity is due to getting floxed, getting older, spending way too much time on the internet, eating foods that are inflammatory, lack of mental stimulation, or some other factor.

I tend to blame the internet, and my mild (or not-so-mild) addiction to Facebook, for a good portion of my memory and attention-span loss, and studies seem to back-up my hunch that the constant dopamine hit that social media gives us isn’t actually good for our brains–especially our memories or attention spans. I read The Shallows: What the Internet Is Doing to Our Brains by Nicholas Carr to learn more about, and reinforce, this notion.

I expected The Shallows to provide information about the deleterious effects of the internet on my brain (that IS the premise of the book), but I didn’t expect it to link antibiotic use to memory loss. Yet… this quote jumped off the pages:

“In the 1960s, University of Pennsylvania neurologist Luis Flexner made a particularly intriguing discovery. After injecting mice with an antibiotic drug that prevented their cells from producing proteins, he found that the animals were unable to form long-term memories (about how to avoid receiving a shock while in a maze) but could continue to store short-term ones.”

An antibiotic kept the mice from forming long-term memories! Whoa!

The antibiotics used in the referenced study weren’t fluoroquinolones, but still…. it’s an interesting connection, and I wonder if the link between antibiotic use and memory (or memory loss, or memory formation/lack of memory formation) has been studied further.

I experienced difficulty forming memories after taking Cipro/ciprofloxacin, and I have heard from many others who have had similar experiences. I wonder how wide-spread, or significant, this problem is. I don’t believe that the effects of fluoroquinolones on human memory formation has ever been studied. It should be studied though. Our cognitive abilities–especially our ability to form meaningful memories–are at the base of both our intelligence and our humanity. Wouldn’t it be horrifying for antibiotics that are given out by the handful to millions of people each year, to be deleteriously affecting our memory formation, our intelligence, and even our humanity? Ugh. That’s a somewhat horrifying thought. I appreciate that some mouse studies have been done though, and the connections are always interesting, even when they are scary. Maybe someday we’ll have more information about the significance of these connections. I hope so, even if the information is frightening.

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87 thoughts on “FQ Antibiotics and Memory

  1. Kate December 27, 2017 at 9:23 am Reply

    Short Term Memory DEFINITELY is affected. I am a writer and I could not write for months. It was absolutely terrifying. But the thing with all this, which continues to plague, is NO ONE believes it when you tell them. Doctors are the most insensitive PIGS on earth. I have been to at least seven and they all deny these effects from Cipro. There is no humanity left in these doctors because all they can think about is “will this lady sue me?” Because doctors fear lawsuits they tend to lean toward “it is all in your mind”, but my inability to walk correctly because my cushion in my knee was eaten away, yes, eaten away very, very quickly and I took only 4 pills! When I went to emergency screaming in pain and unable to use my arms or legs and listening to my joints pop, I had no idea that all this was caused by the Cipro. And now the powers that be have made it so we cannot sue anyone for the loss of our lives. Very, very sad…but at least now my short term memory is better. Not perfect, but better. What are the long term effects? Who knows? I personally know of 6 women adversely affected by Cipro. All of us are miserable. All of us have no recourse. We can write all we want on these websites and those who wrote books can cash in on other’s misery, but none of that is going to change the reality. Ciprofloxin destroys lives. Doctors are the murderers of those lives by prescribing it when they know that there are those who will lose their lives from it.
    My prayers go out to anyone who is affected by this nightmare. Hang in there. Try Detox Tea. Continue to work on your mind/memory. Take magnesium and Vitamin D. Eat grapes. Do everything you can to detox your body. But deep in my heart I know that this poisoning will be with me now until I die. I am just grateful I didn’t kill myself in the beginning. You WILL have those thoughts, but don’t do it! Things WILL get better. Have faith. Pray……

  2. Juzero December 27, 2017 at 10:16 am Reply

    I also had that problem, mental fog and short term lost of memory and ………….::::, I hohe I will be ok one day , I got floxed 20 months ago

  3. Ruth Young December 27, 2017 at 7:52 pm Reply

    I’m at almost four years out and I think my memory is the same as it would have been without my getting floxed. I have difficulty learning the kids’ names at the school where I teach now, but there are a lot of kids, and I think initially learning new names has always been hard for me. I have assigned places for them in my music classes and honestly I think I memorize that seating chart pretty rapidly. Connecting the name with the face is slower, but I think it always was. I don’t actually have prosopagnosia, but I suspect there is a continuum between people who are actually face blind and people who are great at remembering faces. I have realized recently that I use other cues like voice, height, build and hairstyle to tell students apart more than I focus on their faces.

    The temptation is to blame this on the Cipro, but I think I always was that way. Just like I always had anosmia but didn’t know it until ten years ago when we learned cranial nerve testing when I was studying physical therapy and I failed the olfactory nerve test. I could tell the sample was there but I could not tell citrus from peanut butter from vanilla. I finally understood why my female friends in middle school would get so into perfume, scratch and sniff stickers, scented lotions and candles and all that crap. I would pretend to be able to smell whatever they stuck under my nose, and sometimes I could detect something, but I couldn’t tell one scent from another. I thought they were weird. I would pretend to get all excited about whatever scent they were raving over. I thought they were pretending to smell it too, I think. I never realized there was something wrong with my sense of smell.

    My mild prosopagnosia and fairly severe anosmia are longstanding– well before Cipro. I accept these things about myself. For awhile I did not accept my poor ability to connect names and faces because I worked with a coteacher who berated me about it, saying I should know the kids’ names better without using a seating chart. I assumed my difficulties were due to having been floxed and it was very upsetting to me to suspect that.

    As more time has passed and I feel more like myself I realize I am about like how I always was, and to get upset at myself for failing to recognize a face is like getting upset at myself for not being able to differentiate between odors I can barely detect.

    This summer I had some difficulty keeping track of my stuff while working fireworks shows– I was always looking for my e-match or my shooter’s scissors or the tape or you name it. And when someone would hand me a wire to plug into a cue I would likely forget the cue before I could plug it into the firing module and have to ask again.

    There was one pyrotechnician on a couple shows who berated me over this. I felt that my memory issues were Cipro damage and I was absolutely crushed. I got myself a tool belt to stick my stuff in and I worked on concentrating harder and I was able to improve a bit.

    But what made me feel better was realizing that I didn’t have a poor memory, I had a distracted brain, and it was distracted by my body feeling absolutely amazing. My body has always liked a lot of physical activity and fresh air and sunshine. I was feeling twenty years old again and surprised to find that I had more stamina than some of the younger members of the crew. We did a twenty hour day followed by a ten on three hours sleep and I felt fine. I also felt stronger than I had in a long time. After feeling so weak and dealing with so many neurological symptoms for so long and then to suddenly have strength and stamina and to feel completely normal– my brain couldn’t focus on keeping track of anything because it was going “Woo Hoo!!!!” I was too happy to think. That’s a good thing.

    I have begun to forgive myself for things I did not do well after I got floxed, for times I lost my temper or underperformed on the job. I look back at what I went through and I want to just be kind to the poor soul who endured all that. It’s ok that my suffering affected my ability to handle stress, to remember things and to function normally. And it’s ok that I was really really happy to feel good again and couldn’t concentrate. I did a lot of the heaviest grunt work and dirtiest jobs on that fireworks show where that one guy was complaining about my poor memory. My body felt good and I pushed it and I worked really really hard, so he can just stick it. I don’t care. I went through hell and came back whole on the other side. I wasn’t cognitively perfect before Cipro and it is healthier to accept that I will forget things and make mistakes and even people who were not floxed forget things and make mistakes.

    I do think my ability to play the organ is better now than it was preflox. I am also improving on piano, which is amazing at my age. So obviously a floxed brain can recover. It can even end up working better than before thanks to good nutrition and supplements.

  4. Bobby January 11, 2018 at 8:42 pm Reply

    Hi everyone. 27 year old male here. Already posted this elsewhere but I’m trying to max out on info around these parts. I was prescribed 500 mg levaquin for ten days for chronic sinutis. After the third dose I started feeling like my tendons in my wrist were weak and hurting. Started hearing voices and became extremely paranoid and anxious as well. I then went on to read if this could be the medicine doing this to me, and was horrified by what I read. I called the doc the next day, and she said stop taking the levaquin immediately. I did and thought because I had only taken three I wouldn’t be in the trenches long. But Christ was I wrong. Both physical and mental effects. Tendons in both wrists, shoulders, knees, and ankles are hurting bad. Not excruciating, but notably bad. And I’m afraid to exercise and weight lift again. I’m also feeling this burning sensation on my skin all over. Feels quite like a sunburn. There’s no redness or rash. My face will get red right after the shower, but after applying moisturizer, it goes away within 10-15 minutes. Anyone relate to the burning thing?

    Three Saturdays ago I went to a bar (piss poor choice I know) because a good friend of mine was home from California for Christmas. I, for no reason at all, just started to have a complete anxiety attack at the bar after three beers to the point where I had to leave the bar and go for a 20 minute walk just to be able to go back in to sip on water for the rest of the night. My anxiety is the worst part about all of this so far. Constantly overwhelmed by doom and gloom. Also have been having weird dreams every night non stop. Don’t know if this is at least partially self inflicted going nuts about all these symptoms, but it’s really fucking terrifying me.

    I also feel like I’m highly sensitive to sound, like every clank of a glass and every bass drops hits me like an elephant on the chest. That’s gone a way a bit since, but still lingers, and again, can’t tell if it’s because of my remaining sinus issues, the levaquin, or both.

    I’ll also be overwhelmed by malaise and fatigue. I’ll be fine throughout the day, and just out of nowhere this weakness hits and I’m out for the count. And again, like the broken record I am, II don’t know if this partially due to the remaining affects from my sinus infection because i do still feel like I have a sinus headache. But I’m scared shitless.

    I’ve always had some lingering anxiety but NOTHING like this. I was otherwise in decent health. Took and been taking Tylenol sinus, Zyrtec for allergies, mucinex 12 hour for
    Medicine and biotin, vitamin C, magnesium 250 mg, CoQ110 maximum dose, Gaba pills, probiotics twice a day, and one a day men’s health for vitamin in take. It’ll be four weeks Monday since my last dose, and I know this all sounds like small potatoes compared to the other horror stories I’ve read. But I’m still scared shitless and am desperately looking for advice and relatable discussion. I’m just praying this isn’t permanent. NOBODY in my life seems to believe that I have all of these symptoms from levaquin, but I swear it’s the only thing that adds up.

    My physical pain in these two and a half weeks have been on and off. One day my arms (including hands, arms, elbows and shoulders) will feel sore, tenor and inflamed, then it’s my legs and feet, then it’s my hips, butt and back, then it’s all, then it’s nothing. I’m considering talking to my ENT next Monday about getting sinus surgery, and also have an appointment with my allergist on Friday. Also have an appointment with a neurologist on February 1st.

    Any advice and/or words of encouragement will be unbelievably appreciated. It is nice to know I’m not alone in this. Do people (more or less younger people) generally tend to power through this and fully heal? Right now I’m having big doubts about that…

    • Ruth Young January 12, 2018 at 4:57 am Reply

      I went through pretty much exactly the symptoms you have and now at nearly four years out I am quite close to 100% healed. I’ve been really quite good and pretty much normal since year three. I was functional but frequently uncomfortable for much of the first two years. Some of it was hellish beyond description, mostly in the first year, but I got through it and so will you. Your odds of beating this are very good, actually.
      I’m almost fifty and definitely going through menopause, but I feel better than I did in the couple of years before I got floxed. I also have eleven of those old mercury type fillings, I had a serious long term exposure to lead paint dust renovating our house in my early teen years, and I don’t eat completely organic plus I am seriously addicted to sugar. Most floxies in the thick of it would say, looking at my case, I would be domed. But I healed. So if I did it you can too.

      Look up my story on floxiehope and then if you still have questions comment or find me on Facebook and we can chat.

      I would say to stop taking supplemental GABA. It probably is not very bioavailable and even if it is, you may be preventing healing of GABA receptors if you flood your system with too much GABA or anything that binds to GABA receptors. Stay away from
      Valerian and Benzos unless you are already on a benzodiazepine, in which case absolutely do not quit cold turkey if you value your life.

      Most likely one of your issues is loss of receptors for gamma amino butyric acid– the main calming neurotransmitter in your body. This also happens to people who take Benzos for a long time, but through a different process. End result looks about the same though, and prognosis is good for both, although it can take a little longer for floxies.

      Your body will replace those receptors. But you will feel it when it is healing. The burning that feels like a sunburn is because you have GABA receptors all over your body and they are not working properly. It is not the peripheral neuropathy that can sometimes be permanent. It will go away. And come back. And go away. And come back. And finally, probably a few years down the road, it will be barely noticeable and then gone for good.

      The psych symptoms are usually caused by loss of GABA receptors too. Not the only cause, but it is a biggie. The good news is that because of neural plasticity it will reverse. You will get better. Maybe not 100% better, but maybe. You will also learn to cope and adapt. It gets easier.

      Read my story first, then let me know if you have any questions. I do not have all the answers. But I do know of some people who have more answers than I do and can point you in the right direction. Since we have similar symptoms some of the things I tried may help you. Some may not. But the mental discipline I acquired, and the meditation techniques I learned will help and not hurt you no matter what the cause of your symptoms.

      • Bobby January 12, 2018 at 11:35 am Reply

        Hi Ruth! Thank you so much for replying! Glad to see you’ve come as far as you have in your recovery. I’ve taken your advice and stopped taking the GABA supplements as of this morning. But I’m worried, is there gonna be any withdrawal from just abruptly stopping. I’ve started taking a super b complex vitamin in its place. I was doing that the first couple of days, but it turned my urine into a Gatorade lemon like color and it got me concerned.

        Like you said my symptoms have been on and off from the beginning. One day my upper joints will hurt, then lower, then both, then neither. Same with my mental state. One day I’m always anxious, worried, and somewhat depressed, then I’m fine. Again, all since the beginning. The only consistent symptom I seem to have is a little brain fog and A LOT of fatigue. I can get through the work day somewhat ok, but I’ll usually have pneumonia like fatigue at even just moderate physical exertion. Any idea on how long that usually lasts, or when it lightens up? I know that’s a shot in the dark, but I’m desperate lol.

        I did get a prescription for Xanax from my ER doctor 0.25 mgs, but never even got them filled. I did have a prescription previously, but that was only for a brief time in the November of 2014 and never went back.

        Also, maybe a dumb question, but does post workout creatine worsen mental symptoms? I’ve tried to go back to the gym and am a bit worried about what to do and how hard I should push myself.

        I’m wondering if my recovery will be a bit briefer than most since my physical symptoms were only moderately bad and they’ve been on and off. Same with anxiety. The only symptom that’s constant is the fatigue. My appetite has also been off balance. I can eat, but only when I have to, and my incentive to pleasure eat is almost non existent. Sorry if I’ve repeated myself a few times, I’m just making sure I’m getting everything out. And thank you again so much for all your help and input!

        • Bobby January 12, 2018 at 11:42 am

          Also would like to add that beginning with week 3 (this past Monday) I’ve also had bouts with insomnia. I think that was partially due to the harsh anxiety I was experiencing coming to terms with my current state. Two 5 mg pills of melatonin usually clears that up. But with or without sleep aid, I’m always having weird vivid dreams. Not really nightmares but definetely weird. I’ll also usually wake up at least 2-3 times throughout the night and take 20-30 minutes to fall back asleep.

        • Ruth Young January 12, 2018 at 2:16 pm

          I doubt you will have withdrawal from the GABA, as it is not very bioavailable generally. If it was a liposomal GABA, maybe, but I doubt it. It’s not a Benzo. If anything you might notice an immediate uptick in symptoms because it was covering the existing damage like a bandaid. Assuming it was not all being destroyed in your gut.

          You could try L-theanine. It blocks the opppsite receptors, attaching to them without activating them. I got great results with it taking 200-300 mg on an empty stomach. A good high quality green tea can give the same effect. The theanine will block the caffeine in the tea. Get a high quality tea, as the cheap teas tend to contain a lot of fluoride.

          FQ’s do harm the mitochondria, so they can cause a lot of fatigue. The powerhouse of your cells was likely affected. It can reverse if the damage was not too great. It takes time. My story lists some supplements that help the mitochondria, and the micronized purple rice I took is helpful for that too. I still take it and it gives me steady energy, better than I had just prior to getting floxed. It is the least risky of all the supplements I took.

          You body may not be assimilating your B Vitamins right now. You have to be careful with supplements, adding things in the right order. I know for someone with a lot of damage, B Vitamins are not at the top of the list. They have to come later, because until other things are in place your body cannot use them. Sterling Hill, a geneticist I met through FB, knows a lot more about that than I. Her website is https://mthfrsupport.com/ It is possible that I had issues with B vitamin absorption early on, as a spectracell test I had done showed all my B Vitamins being high. It seemed impossible to me that anything could be high as depleted as my body felt. Maybe they were just sitting there in my body but not being utilized correctly. Quite possible. But I feel great today, so whatever was going on must have reversed itself.

          The supplements Dr. Jay Cohen MD suggested as being helpful for the floxed are Vitamin C and E, magnesium, Zinc and NAC. B Vitamins are not on that list.

          That being said, I seemed to have good results with methyl B-12. Make sure it is methylated. It has been shown to help nerves heal. I took it to prevent neuropathy from the Cipro and I not only did not get permanent PN, at about a year out my foot that had a numb area on it from hurting it ice skating in 1983 started tingling in that area, and now I have normal sensation there. That was wild. It gave me a lot of hope that if my body was taking the things I was giving it and healing thirty year old damage, then my flox damage had to be healing also.

          Do not take synthetic B-6 at all. It can actually cause neuropathy. Some people seem to benefit from it in low doses, but my thought is, if anyone is likely to react to something that gives some people issues, it is a Floxie.

          The insomnia is likely to be with you for some time. You will have to find ways to cope. Mine got significantly more brutal a few months out. But my sleep is good now. It did resolve. Vivid dreams may be the tip of the iceberg for you, but it will get better. Whatever weird sleep issues arise they will absolutely not be permanent. Just hang in there.

  5. Bobby January 12, 2018 at 2:27 pm Reply

    Thank you so much Ruth! I was taking nature made b-12 not b-6 but I’d have to check the bottle to see if it was methylated. I’ve also been taking magnesium 250 mg, vitamin c, biotin (don’t know if that’s hurting anything, was taking it for years before this fun train began and only notice bad changes when taken with the b-12) coq, and turmeric. I was taking all of these except the coq and turmeric for a significant time before the flox as well as during. I will try and look into your other recommendations and hope for the best. I’ll keep you posted and again thanks for all the detailed responses. Best of luck to you on your contibued healing as well.

    • Bobby January 12, 2018 at 4:15 pm Reply

      Hey Ruth actually one more question. Do you have any idea if working out (specifically weightlifting) exacerbates mental symptoms like anxiety? I know this may be dumb and shallow, but before this all went down I was in the best shape I’ve ever been in. Although it’s absolutely small potatoes in the grand scheme of things, it is somewhat depressing to see all that hard work go down the drain.

      I know pre workout drinks like c4 are out of the question because of the obnoxious amount of caffeine in them, but what about post work out drinks? Not protein, but the ones that just add nutrients to the muscles and have creatine in them.

      Again it’s more towards the way bottom of all my worries right now, but I at least wanna give it a try.

      • Ruth Young January 12, 2018 at 8:39 pm Reply

        I would up the magnesium and include Epsom salt bath salts or magnesium lotion. I like magnesium malate orally because it is well absorbed. The daily safe upper limit is around a gram a day. If you get diarrhea you can back off on it. Increasing it slowly is key. If your kidneys are unhealthy you cannot supplement magnesium safely in any amount or any form.

        If you have bad adrenal fatigue magnesium could be problematic also. I like to add a little sea salt to my water to help balance out sodium and magnesium, since I take a lot of magnesium.

        Tests I had from doctors when first floxed included tests for kidney function and adrenal function. You should get basic tests done on the functioning of your body in general both to rule out other things and to make sure any protocol you try that works for most people is going to be safe for you. It’s still not a guarantee of safety, but a lot better than going into this blind. Basic tests are one thing doctors can do. They can’t fix FQ toxicity but they can provide valuable information.

        None of the tests will reveal FQ toxicity. There is no test for it. Diagnosis is by ruling out everything else. Except they still won’t give you a diagnosis. There is no ICD9 code (or whatever they use today) for FQ toxicity. It is a mad mad world.

        I think creatine can be stimulating. I had good results with a whey protein supplement. I mixed it in my kefir. But I think people who just take creatine run into issues. I don’t think the whey protein did a tremendous amount toward my healing aside from just covering my bases, making sure my body had the building blocks it needed. It still took a long time for my tendons to heal. There is no magic bullet, no cure that reverses everything in days or even weeks. It takes months to years. It sucks, but that is the truth. It’s a long road. But I do think healing is possible for most people and even though getting to 100% takes years (usually) you will most likely feel quite a bit better and much like your old self long before every trace of this happening is erased. I know it is shocking the amount of damage a few pills can do.

        When it first happened to me I was so weak I could barely walk. My joints were unstable. I couldn’t do three straight leg raises in a row without seeing extensor lag– no weights on my ankles, just lifting my leg, and I couldn’t keep it straight up and down three times in a row.

        I have always been very muscular and strong for a woman. I once won a bench press contest at my fitness center by lifting 50 pounds 24 times in a row. Most of the other women did only a few times and the person closest behind me in the contest bench pressed the 50 pounds only nine times.

        I have trouble buying clothes because my upper arms and shoulders are too bulky to fit in a lot of women’s tops. Except after I got floxed. Suddenly, my solid muscular body was spindly– my arms were like sticks, my calves had a wasted appearance. I have huge calves normally, and suddenly I looked like I was ninety and hadn’t walked in two decades. It just felt so weird to be soooo weak. I had to quit working as a physical therapist assistant. My patients would have been stronger than I was, many of them.

        My strength came back somewhat after only a few months. But I am still not 100% as strong as I was and it took more than a year before I could exercise consistently and feel like I was consistently building muscle like I would have before. Lots of ups and downs and feeling like I was getting there, but then feeling weak and tired all over again.

        And I got injured! I got hurt so easily doing things I could have done without a second thought before. That was awful– I would just start to feel I was making progress and then I would strain or pull or sprain something and be in pain for such a long time. My right hip bone (coxa) was anteriorly rotated slightly for nearly two years while I couldn’t figure out why all the stretching I was doing was not helping my hip feel better. I had lifted a heavy box working fireworks that first summer after getting floxed and it was too much.

        I think it is too soon for you to attempt exercise. It will not be beneficial right now, and the odds of getting hurt are high. When I was first floxed my exercise routine consisted of walking back and forth in my house and doing very gentle stretching and range of motion exercises. Yes, you have to keep moving. But your body cannot handle lifting any weights or doing cardio right now.

        Exercise is also going to flare CNS symptoms for quite awhile. It still can cause a flare for me. I got a pretty intense two week relapse in the fall after biking with my mother and my husband. We did 12.5 miles. I hadn’t biked that far since about 1985.

        Exercise stimulates healing of GABA receptors. In studies with mice, the more the mice ran on their little wheels the more GABA receptors they had and the less likely they were to die. The sedentary mice had fewer GABA receptors and a higher incidence of mortality from all causes.

        Our bodies need GABA receptors. Exercise helps put them back. Seems all good– except that when a body that lacks GABA receptors adds new ones we feel it. Healing is a painful process. An unavoidable process, but one you may not want to rush.

        During my first two years after getting floxed heavy cardio (not so much weights, just cardio) caused horrific torture insomnia two nights later. I would get horrible, painful symptoms every time I relaxed, much less slept, all night long. I was getting nights like that randomly anyone, but one sure way to get one was to exercise hard. I would definitely have one the next night or two nights later.

        If I exercised hard right before bed I would not sleep at all that night plus the next two. I think hard cardio raises cortisol, which we really do not need in our present state, so you really need to exercise early in the day when you do go back to it. And you have to be prepared for exercise to stimulate healing of GABA receptors, which is just painful.

        I found if I did brief maximal bursts of effort instead of a long sustained effort I did better later on. Also, shorter workouts in general (whether hard or easy) were better.

        Now I do any kind of workout I want and usually do not have issues. Even in fall, the torture insomnia did not happen, but I got the fast heartbeat and the burning sensations back for a couple weeks and I had one evening of really horrible fatigue when I had to be at school late for parent teacher conferences.

        Everything is back to normal now. I am
        getting stronger again. The gym teacher at the school where I teach had this awesome climbing net hooked up and he let me try it out one morning before the kids came. I only got about four rungs up it, but it felt great. I felt strong afterward. My body feels like my body again. I am doing more and more strength training and planks and it is working.

        But I am almost four years out. You have to give yourself time and not push too hard too soon. Eventually, you will be yourself again and get back what you have lost for now.

        It isn’t fair that doctors give out these drugs that can so disrupt our lives. But try to think of it as just that– a temporary disruption. Although some people do suffer permanent harm it is by no means the majority. I believe your prognosis is good and you have every reason to be hopeful. You may find your time line faster than what I said– I am older and going through some hormonal changes. But you still need to be patient and careful for awhile.

        • Bobby January 12, 2018 at 9:16 pm

          When the GABA receptors are healing from exercise are you talking more physical pain or mental pain? That’s the one aspect I’m a little confused on. Generally speaking when would it come time for me to try a little weight lifting again? I’m not trying to rush into it too quick, but what would be the tell tale signs I should be looking for that will tell me it’s at least worth a try?

          I think you’re also right about the getting some testing done. I guess the thought never dawned on me because these horrid symptoms didn’t come to be before I took the levaquin. I’ll see what I can schedule in come Monday.

          And once more, thank you so much for all the helpful tips.

        • Ruth Young January 13, 2018 at 4:28 am

          Check out Benzo Buddies or any site for people recovering from benzodiazepine withdrawal. Doesn’t mean you will get every symtom listed. New symptoms can come at any time and old ones can reappear at any time.

          The issue is imbalance of your autonomic nervous system. Look up dysautonomia and that can also give you some idea of what you might expect, as it is essentially what is going on. Symptoms will definitely be both physical and mental. They can affect absolutely every organ system of the body. This is why it is good to rule out actual organ problems as opposed to just problems caused by dysautonomia.

          Usually, though not always, a floxie’s organs are fine, but the system controlling everything is going haywire. Think of the autonomic nervous system as like the computer. You likely have a software problem instead of a hardware problem, if that analogy works for you.

          Your brain tries to send messages of rest and digest but they get garbled and you can actually get the opposite. You could think of it in terms of faulty wiring in an old automobile. There is nothing wrong with the radio in my ’76 Toronado but it sounds like crap and half the time the back speakers don’t work at all because the wiring is shot. But the speakers themselves are fine.

          You can expect feeling like nothing in your body works anymore. It will feel permanent. But if everything checks out fine (you can even get nerve testing to rule out PN) then it is because your body cannot respond adequately to GABA. But you have neural plasticity so the situation will reverse. Painfully and slowly, it will reverse.

          But until then exercise can cause absolutely anything to go haywire if that is the area your body works on to replace receptors. FQ’s do not downgrade receptors like Benzos, they destroy the mitochondria (the powerhouse) of their cells. It takes a long time to form brand new functional ones. But your body does it.

          You are a long way from thinking about weight lifting. You need to first rule out actual damage or other issues causing what happened to you. Also, the same mitochondrial damage to which your GABA receptors were sensitive, could be happening in other parts of your body. I was well over a month out when my Achilles’ tendons got so bad that I went in panic to Dr. Whitcomb and he told me about NAC. It took time for the cellular damage processes to be revealed and even more time for them to be reversed. You need to be highly cautious with your body for at least six months. I overdid it before that time frame and my hip and low back hurt chronically for a year.

          When you go through such a trauma some muscle groups are actually weakened by the body for some reason. Plus, the actual weakness from loss of functional minerals and all kinds of other processes going on we do not even understand.

          I almost not trying to scare you. You will most likely be fine and heal in the time line of many floxies– about 18-36 months for full or nearly full recovery.

          But for myself, I took the approach of covering all my bases. I didn’t just assume GABA receptors were responsible for everything and assume I couldn’t develop PN or damaged cartilage and tendons. It was kind of easy to know that because while I was teaching, standing there feet flat on the floor, I would feel intense pain in my Achilles and then a sensation of a few layers of cells tearing and a sensation of relief for a few minutes before the process would repeat all day long. But that did not start happening in three weeks. It was more like six.

          Supporting your body with nutrition and supplements if you can tolerate them is great at this point. Doing exercise that stresses your body is counterproductive. For awhile (no one knows how long) your safest bet is to treat your body like you would that of a geriatric patient. It sucks, but it is a safe approach. The one I took. And I am ok now.

  6. Bobby January 13, 2018 at 11:11 am Reply

    Hey Ruth. Thanks once again for the reply. Sorry for so many questions, this is all like learning a foreign language to me lol. A month ago I would never know what the hell a gaba receptor is. So basically, I understand weight lifting is not a good option for me right now. But six or so months from now am I inevitably going to feel crappy doing it, but just a less than now? Honestly I did try going back last week, and anxiety did go haywire but I thought that was at least mostly due to the c4. I definitely bit off more than I could chew, and thought I was better than I was. Physically I felt the worst the first week and then it’s been and on and off game of mild nuisance pain ever since, with some occasional pins and needles and numbness in my hands. I also notice that when it’s really cold and snowy out my “ring toes” feel a bit numb.(I live in Buffalo).

    One thing that didn’t dawn on me till now is nicotine. I’ve been a smoker for about 12 years now, and have tried everything to quit. Patches, vapes you name it. I know nicotine is a stimulant, but with my anxiety cranked to 11, I can’t imagine trying to go cold turkey now. Is nicotine a big deal breaker for healing? I’m vaping as of now, and it doesn’t seem to have a big negative effect on my anxiety day to day. I’ve read a couple stories where some floxies have said that smoking actually helped them. Do some floxies get by on nicotine relatively unscathed? I’d be utterly screwed if I had to cut it out completely right now..

    • Ruth Young January 13, 2018 at 1:59 pm Reply

      I know of smokers who healed. The nicotine is probably not the problem because smoking is something you enjoy. It is going to give you a hit of dopamine doing it so you may get temporary relief from the psych symptoms.

      What scares me about smoking is the fact that it constricts blood vessels. You need all the possible blood supply to potentially compromised connective tissue right now. Do the nicotine gum if you have to but do not smoke, if you can manage it.

      This might be a perfect opportunity to quit. You are going to feel crappy for awhile anyway… I quit sugar cold turkey for six months after I got floxed, fearing to put what is essentially a poison into my body and wreck my chances for healing.

      Yes, most floxies heal. But some do suffer permanent harm. Sometimes that damage doesn’t even show up for months. If you want to give yourself every conceivable chance to be in the group that heals I would say stop smoking.

      But I never smoked. My late husband struggled with it even though he never smoked while I knew him– he wanted one every single day. If he’d known his small airplane was going to go down when he was 33… but then he quit because when he would pull G’s in the plane he would feel all that crud moving around in his lungs.

      I used to work in healthcare. I have seen first hand what smoking does to the human body. It is pretty awful. But I know how hard it is to quit.

      You’ll just have to work out what you think you can handle right now vs what your body needs and doesn’t need. Make the best decision you can and just keep pushing forward.

      No one is without vices. I have floxies telling me I could be 100% if I gave up sugar and wheat and went organic for all my food. Maybe they are right. But maybe a donut now and then is worth it? I am not perfect, and am not saying you have to be. Just do the best you can.

      • Bobby January 13, 2018 at 2:59 pm Reply

        So it’s the actually smoking that’s the problem, not the actual nicotine? That’d be somewhat of a relief. I was thinking of just switching to nicotine patches again and see if that helps instead.

        • Ruth Young January 13, 2018 at 7:00 pm

          Is nicotine a vasoconstrictor? I do not know. That seems to be one of the things smoking does that just wreaks havoc on a body. I worked with amputees who lost limbs or parts of their limbs because of smoking. Especially with diabetes and smoking together, it is just a recipe for reduced blood flow, impaired wound healing, and nasty infections. FQ’s cause blood sugar dysregulation. Seems like a bad bad mix to be floxed and continue to smoke. Nicotine could still be harmful…
          but I know there are buttloads of toxins in cigarette smoke. Narrowing your exposure to one toxin sounds better than continuing to expose yourself to all of them.

  7. Bobby January 13, 2018 at 7:38 pm Reply

    Yikes. Definetely gonna just narrow that down and stick to the nicotine. I am somewhat relieved that there have been floxed smokers that have eventually recovered though, for some reason I automatically assumed that’d make me a lost cause ha

    • Bobby January 13, 2018 at 9:42 pm Reply

      And after a week of semi peace the anxiety attacks and depression are back. It’s crazy how they can just come and go without rhyme or reason. Ugh.

      • Ruth Young January 14, 2018 at 5:45 am Reply

        That your psychological symptoms come and go, and the fact that they went for about a week, is probably a good sign. That is the general pattern for Benzo withdrawal type symptoms, so to me that is evidence the issue may be loss of receptors for gamma amino butyric acid. The pattern for those to heal is normal windows, where you feel pretty much like your old self, interspersed with relapses where you don’t feel very good at all. New symptoms can appear at any time. Old ones can reappear at any time. Usually the normal windows get more normal and start to last longer and the relapses get less intense. But it is not a straight upward progression. You can get random bad downturns and sudden windows where you can’t believe it was still possible to be feeling that great, only to have the badness return again. It is maddening.

        Some people get panicky and decide any new symtom or return of an old one must mean new damage or that the FQ is still in their system. Can a new symptom mean more damage has occurred? Well, possibly. But since we know FQ’s damage GABA receptors and we know how they heal in that crazy up and down pattern, the chances are good it is a downturn that is part of healing.

        Can FQ’s hang around past their documented half life, continuing to cause new damage? If you are obese, yes, they will take longer to clear. If your ability to detox gets compromised, of course they will take longer to clear your system. But years later, for there still to be enough to be clinically significant and get released and cause a new symptom? No way.

        In these initial stages your task is to take the best care of your body you can so that it has the best chance to detox that crap and so that it can begin to repair and rebuild instead of continue to be torn down.

        Your other task is not to panic because the fight or flight part of our nervous system is not restorative. Rest and digest is where we heal. You may not be able to do much resting and digesting during a downturn, but as soon as you get a break you have to allow your body that break. It needed a break from healing and took it so you need to stay as calm and relaxed as possible during that time to promote healing. The more you can just roll with the ups and downs the better. The doctor who treated me post flox said it was a mind game to get better. He was absolutely right. More critical than anything else, even supplements and nutrition, is winning that mind game. The ups and downs of the symptoms and the intensity of the psych symptoms are going to mess with your head, but you can hang on through all of it. You can beat it and come it a better and stronger person on the other side. I did, so I know you can do it.

        • Bobby January 14, 2018 at 9:31 am

          Thanks again so much Ruth! One more question and I swear I’ll leave you alone lol. I know oral steroids like prednisone are a big no no, but I’ve read inhaled steroids like Flonase and asthma inhalers are relatively safe for floxies if used sparingly. I still have horrid sinuses and allergies, and am on Flonase still, and *occasionally* an rescue inhaler if my allergy problems get really bad. Any truth to the claim they’re not as bad for making symptoms worse like oral steroids are?

        • Ruth Young January 14, 2018 at 10:54 am

          No steroids are completely safe, but the farther out you go the lower the risks, and the less likely to exacerbate your side effects. I would say use your inhaler if you need it. NAC helps loosen up snot so maybe you want to try that when your sinuses plug up. It breaks the disulfide bonds in mucus. I love that stuff, but I don’t take it every day. Just when I get stuffed up. Another thing that helps my allergies is Quercetin, a supplement you may want to look into. It is as good as Zyrtec for allergies plus it opens nasal passages. Again, you should not take it all the time as it can depress thyroid function. I only take it during allergy season.

  8. Bobby January 14, 2018 at 12:53 pm Reply

    Definetley going to look into those options. I’ve had a lot of sinus and allergy problems this past year for whatever reason so that’s what kinda puts me in a rock and a hard place. That’s really been my only big health issue. Otherwise I’ve been in good health.

    If push came to shove and I had to use the Flonase, do you know of many (or any really) floxies that have healed with having to use it? They’re not necessarily as dangerous as regular oral ones right?

    Again I’m gonna look into other options, I just wanna make sure I have a viable plan b in place.

    • Bobby January 14, 2018 at 8:26 pm Reply

      Yet another new side effect. Body temperature felt a little cold and shivery for no reason. Had chills. Fingernails went a little bluish purple…

      • Ruth Young January 15, 2018 at 6:19 am Reply

        I had that intolerance to cold, especially in the extremities. It completely went away. I had intolerance to heat also, which normalized. It took over a year for me to respond normally to temperatures again. I was wearing mittens when it was fifty degrees out. Depending on where you live that may not seem abnormal, but it definitely is not normal for me. I’m back to forgetting my gloves when it’s ten degrees out again, so all is back to normal.

        • Bobby January 15, 2018 at 1:33 pm

          This was seemingly out of nowhere in my 70 degree house. I was wearing boxers and a t shirt but I was inside. Just started shivering and feeling weirdly cold for no reason, then the hands went blue. Only for a couple minutes but it scared the hell out of me. It’s below 10 degrees where I live right now with a -20 windchill. But a few days ago (Thursday) it was in the low 60s here. So I don’t know if that had something to do with it.

        • Ruth Young January 15, 2018 at 5:59 pm

          We must live close to each other, Bobby. You just described our weather in south eastern Wisconsin to a tee. Snow today– I did a little cross country skiing.

  9. Bobby January 15, 2018 at 6:38 pm Reply

    I’m in Buffalo, NY. Even for us it’s been an extremely horrid winter.

    • Ruth Young January 15, 2018 at 6:57 pm Reply

      My roommate in college was from Buffalo. She said we didn’t know what snow was here and then she would point to the side of her hip to show how high the snow would have been in Buffalo.

      I got floxed in the winter and one of the best healing techniques for me was to lie and relax listening to music and picture summer in my mind. By the time summer came I actually was well enough to go to the places I had imagined.

      • Bobby January 16, 2018 at 1:51 am Reply

        You’re right, that and staying positive is all I can really do at this point (as well as vitamin intake and some of your suggested remedies). A lot of things are still scaring me. Like my face always looking rashy and red right after a shower only to go away within ten minutes or so lol. But hopefully time will clear this up and I’ll be somewhat kinda normal by Summer.

    • Meg April 11, 2018 at 6:17 am Reply

      Bobby, I am in the Buffalo area. I am just learning that I have been floxed and I would like to find a doctor that will listen to me as I know mine will not (personally I think she’s out to kill me lol, she never believes anything I tell her and she is the one that prescribed me the dreaded Cipro in the first place, on top of Ibuprofen, nice huh!?). I was wondering who your doctor is and what you think of him/her? Have they helped you in any way?

  10. Bobby January 17, 2018 at 10:20 pm Reply

    Hey Ruth, if you’re still around, I know we talked about that burning sensation on my skin, but do you have any idea why my face gets a rashy like look all over right after my shower? The burning sensation all over my body subsided for the last few days, which makes it even more concerning. Right after my shower tonight though, I felt that burning sensation on my face, and there was the red rash again. It of course went away after 10-15 minutes like usual, but any idea what that is?

    Also did your hair constantly feel and look dry no matter what? I use biotin shampoo and the front of my hair constantly looks dried out and lifeless. Any idea if that’s a temporary side effect or something permanent?

    • Ruth Young January 18, 2018 at 4:21 am Reply

      I got random red rashes frequently in the beginning but never on my face. They stopped. One rash was from NAC– I think it detoxed me too much. It was red rings sort of. Very distinctive. I can take NAC now without getting a rash and I no longer get random red rashes on my skin, so likely not permanent for you either.

      I still can get the burning on my skin. I have been cross country skiing and doing some new strength training stuff at my gym using these straps attached to the wall. Very cool. But exercise is proven to give you more GABA receptors so I think I am making more in response to the new exercises and the skiing. The burning was pretty intense the past two days. But if I do just my normal level of activity I don’t get it anymore. It is a sign of your body replacing GABA receptors, which are located all over your body. Eventually, your body will catch up. Even mine is actually catching up because exercise used to give me a night of torture insomnia usually a day or two later. That no longer happens. I think within a year or two or three it won’t make me burn anymore either. Healing of the nervous system is slow, but I think logically it must get there all the way. Dr Whitcomb thinks my low levels of progesterone due to my age (and toady HRT does not get the levels up to exactly where you were when you were younger) will prevent complete healing for me. I think if I keep exercising I can force my body to keep making more GABA receptors, because it obviously does just that.

      My hair sucked for a good almost three years. Then last year I had to cut off about seven inches to totally get rid of Cipro damaged crappy hair. My hair is still long, but not like it was thanks to Cipro. I am probably too old for hair down to my butt anyway. It does seem more shiny now. I think once your body catches up on things the FQ depleted it will make normal hair for you. Might take awhile. Just be glad you are not a female with long hair that was her pride and joy. Cipro can be like an enemy that takes away anything you loved about your body or your life. Luckily, the effects are quite frequently not permanent. They were not permanent for me and I am much older than you and going through a major hormonal shift.

      • Bobby January 18, 2018 at 8:07 am Reply

        Well that’s good to know. For all the complaining I do, I do have to say I’ve been feeling a relief of symptoms lately. My fatigue is basically damn near non existent since mid last week. My anxiety and depression has been occurring less frequently and to anmuch less intensity when it does. Pressure in face and ears along with the major sound sensitivity is practically all gone as well. Tendon and joint pain (specially in my wrists, and REALLY in my feet and toes) is still bothersome, but very on and off, and the body wide joint pain is already miles better than it was week one. Burning sensation is much better too. I know that doesn’t mean I’m out of the woods by any stretch of the imagination, and all this can relapse at any time. But it does give me a lot of hope I may be one of the fortunate ones that heal relatively quickly. Even when I was at my worst I was able to walk and function. Fingers crossed.

  11. Bobby January 20, 2018 at 11:28 am Reply

    Hey Ruth, me again. The other day I noticed my left pinky knuckle hurting bad. Like someone smashed it with a hammer. The sinus pressure with my face also returned. I was off the Flonase for a few days, so I decided to use it last night. This morning I woke up with my left hand numb, left pinky still hurting, and my left foot feeling almost like it was broken. After about 10 minutes of walking around it all pretty much went away. But I’m wondering, is this just a brief relapse? Did the Flonase hurt me? The left pinky knuckle was already hurting me beforehand, but the left foot pain had me concerned. Also feel like the fatigue has somewhat returned.

    If my Achilles’ tendon ruptured, I shouldn’t be able to walk, right? Dumb question I know but I’m just trying to cover my basis. Lol.

    Also, gastro issues are bothersome again. Diarrhea just 20 minutes ago. I already had a gastro appointment, but if I had to have an endoscopy done, is that usually an issue for floxies?

    Thanks again,

    • Ruth Young January 20, 2018 at 2:23 pm Reply

      I just happened to read a post from a doctor who was floxed and he said no steroid of any kind ever for the rest of your life if you are a floxie. You might want to ditch the Flonase. I know some people say it is ok, but if a doctor says it is not, I would be inclined to believe that. If it is a steroid you can’t live without, like a rescue inhaler, that is one thing, but my guess is that you can probably find alternatives to the Flonase. I would if I were you.

      Flox damage can cause a lot of joint pain. I definitely had my share of it, though not as severely as some. Try not to panic. I think it is a good sign ghatbit got better as you got up and moved around. You definitely would know it if you ruptured any tendon, especially the Achilles. The joint would not be able to be moved– tendons transfer the power of the muscle to the bone to move it. If that connection is severed you will definitely know it.

    • Ruth Young January 20, 2018 at 2:28 pm Reply

      Oops, forgot your question about colonoscopy for floxies. It is most likely not necessary. The issues of loss of healthy flora and autonomic nervous system dysfunction will not show up in a colonoscopy. The prep for one is tough on your body and will further deplete your flora. The drug they give you to sedate you could compromise the healing of your nervous system at this time, depending on what it is.

      A lot of people going through Benzo withdrawal end up with GI distress because those drugs, like FQ’s, mess with your autonomic nervous system. From what I have read nearly every time these people harmed by Benzos go for a colonoscopy, fearing colon cancer, nothing is found.

      Floxies would probably be in the same boat. What is more likely? A) You suddenly have colon cancer or B) you got floxed and it messed with your gut health and your autonomic nervous system’s rest and digest functions? I would go with B in a heartbeat.

      • Bobby January 20, 2018 at 5:54 pm Reply

        It’s not the colonoscopy I was aiming to do, but the endoscopy, the one where they put the tube down the throat. My ent noticed reflux in my throat, and suggested it. I guess sometimes problems in the gut can cause sinus issues.

        • Bobby January 20, 2018 at 6:37 pm

          Also, I can’t seem to find a whole with foods to avoid. Would having something like chicken fingers and fries, or pizza one-two times a week have a significant negative effect on floxies?

        • Ruth Young January 20, 2018 at 6:58 pm

          I am the wrong floxie to ask about what food to avoid. Other than cutting out sugar for six months I always ate anything I wanted with no issues. Two exceptions: Italian sausage kept me awake all night every time I had it. A friend told me pepperoni gives her weird dreams so I figured if it did that to her it probably meant a sleepless night for me, so I avoided that too.

        • Ruth Young January 20, 2018 at 7:06 pm

          I think it depends on whether they need to sedate you or numb any part of you to complete the scan. Also, if they find reflux they will probably want to treat you with things that block stomach acid– proton pump inhibitors, I think they are called. Those are bad because we need stomach acid to be able to digest functional minerals. People on those drugs often end up magnesium deficientand you just took a drug tha chelates magnesium. If the reflux is a new issue it may be solely flox related and therefore will disappear in time anyway, without subjecting yourself to any medication. I can’t tell you what to do, except to do lots of research. Learn all you can about how FQ’s affect the human body because your doc will not know a darn thing about that, but you have to because it can affect how you respond to treatments and it can cause all kinds of symptoms that, though distressing, may be temporary. Tre FDA’s own label for Cipro, available online, is your first place to start. Is GERD a side effect listed for Cipro? Might take awhile to find out- the warning label is pages and pages long with lists of side effects for every system of the body. Despite this, doctors will insist it is a very safe medication and deny it did anything to you.

  12. Bobby January 20, 2018 at 7:02 pm Reply

    And last thing: is fatigue something should be coming and going as a symptom? I was feeling really great in that regard, and now *poof* back to square one.

    • Ruth Young January 20, 2018 at 7:17 pm Reply

      Absolutely any symptom can return at any time and new ones can crop up at any time. I had some pretty intense fatigue earlier this week– the second time that has happened shortly after increasing my activity level significantly. I am at nearly four years out. It may be a sign of mitochondrial damage or that due to damage to my gut health my body is not assimilating B Vitamins correctly so therefore my Kreb’s cycle is not giving me adequate energy to power my cells. It could be a heck of a lot of things. I just don’t know and I am reluctant to spend the piles of money it would take to find out. I’m not panicking about it. I felt ok today. I’m not going to stop exercising, but I am keeping an eye on whether I need to return to easy slow walking for awhile in place of some more vigorous activities.

      But my point is, that even though I still have flox symptoms returning at times, I am not allowing myself to get upset about it or keep me from living my life. It takes awhile to come to terms with what happened and that your body is different now and probably will be for some time. But you are young so there is a good chance your timeline will be a lot quicker than mine.

      People tend to answer based in their own experience. People permanently harmed will tell you you will be too. People who healed in a few months will tell you you probably will too. People like me, for whom healing takes quite a few years will tell you to expect that time line.

      But the truth is that you are you and your healing will be unique as your own body is unique. No one can tell you exactly what will happen. But an old symptom coming back is definitely not unusual for floxies and does not mean you will not heal. Most doctors who do believe us (there are some) say that a year out is nothing. It generally takes more time than that for cellular damage processes to reverse and for the nervousness system to repair itself and the gut to repair itself. FQ toxicity is a chronic, systemic illness. It heals in its own course over a significant amount of time, generally, but there are people who have beaten in months not years.

    • Bobby January 20, 2018 at 7:19 pm Reply

      Unfornunately, it is not a new symptom, but something that wasn’t suspected for causing my sinus issues till now. Is prilosec a ppi? I haven’t been taking that so far, but have been taking ranitidine. Ay yi yi what a nightmare lol.

      • Bobby January 20, 2018 at 9:12 pm Reply

        Ruth, do you have a link to where the doctor said “no steroids”

        • Ruth Young January 21, 2018 at 4:25 am

          His name is Dr Mark Ghalili. It was something he said to someone on FB so there is no link, but you can look him up on social media. He has a clinic and has begun treating people for FQ toxicity. I don’t think he has all the answers yet, but at least he is trying.

          Personally, I think there is a point where steroids would be safe again and it is sooner than the point where NSAID’s would be safe again. I would be a lot more cautious about NSAID’s than steroids, personally. I got floxed in the late 1980’s and did not know it. Luckily, I hardly ever take pills for pain. I might have been married to my second husband before I actually took an NSAID, so that is a span of nearly a decade, if not longer. I had no reaction to NSAID’s by that time. I will never take another one though. I have taken some steroids for sinus issues. By that point my tendons and joints were feeling fine, but I did notice an uptick in psychological symptoms, especially the hostility. I had to stop them. They helped my sinuses, but made me feel emotionally unstable at a time I thought I was past all that.

      • Ruth Young January 21, 2018 at 4:17 am Reply

        Prilosec is a PPI. They are bad news and do not actually fix anything. Lisa also notes in her story that the symptoms of too little stomach acid are identical to those of having too much, but all these symptoms are generally treated by attempts to reduce stomach acid. Not enough stomach acid means our stomach cannot eradicate bad bacteria effectively, never mind the calcium and magnesium deficiencies.

        A PT once told me a physical way to improve GERD. She sold a product called the miracle ball in her clinic. You take one of the miracle balls (they come in a set) and lie on your stomach with it placed up just under your breastbone– where the rib cage begins, in that soft spot just below there. I think she had patients do that for a few minutes everyday. It stimulated the esophageal sphincter to work better, stopping the reflux. Something to look into, and even if it doesn’t work the miracle ball method is pretty good for all kinds of aches and pains. I should get it for myself again– I gave mine away to a friend who has GERD to try it. She is still taking her Prilosec, so I am not sure if it worked. Of course, for it to work, you have to use it everyday too.

  13. Bobby January 21, 2018 at 10:46 am Reply

    Yeah I do apologize for sounding like a hypochondriac, it’s just all so insanely frustrating. What’s worse is that no one believes this is real, or as severe as it is. Not my family, friends, nobody. I had one ENT doctor somewhat understand, but of course, there was nothing she could really do about it.

    I just feel stuck in a rut at this point. I tried going without the Flonase, and my sinus congestion became unbearable within 48 hrs. I’ve had bad joint pain in my left pinky knuckle for days, and don’t know if that’s what caused it, or if it was just the symptoms cycling. Either way this is the worst my joints have felt since week 1, but at least it’s only in a couple of places instead of literally everywhere (feet, toes, ankles, and my left pinky). My ent said it’s probably GERD, and now I don’t know how or even if I can properly treat it. It feels very damned if I do, damned if I don’t.

    Again, I appreciate everything you’ve done for me Ruth. It just is utter chaos lol.

    • Bobby January 21, 2018 at 6:29 pm Reply

      Also any idea what to do for sharp rib pain? Obviously ibuprofens out, is it just something you have to grin and bear?

      • Ruth Young January 21, 2018 at 7:12 pm Reply

        Some floxies have tried kratom for pain with good results. I never take anything for pain. I never have. I think I have a high pain tolerance, plus I figure pain is your body telling you what is going on, so I have never felt comfortable medicating it away. That’s just me being weird, I guess. I’m sure other floxies do take things for pain that are safe for us. I just never have.

      • Ruth Young January 22, 2018 at 3:24 am Reply

        I have not read of another floxie complaining of sharp rib pain, but we do get lots of aches and pains and some of them can be very localized. I had muscle cramping where it would be just one muscle or one part of a muscle getting so tight I could hardly stand the pain. Pain like that came and went without warning. I took a class to renew my physical therapist’s license and the instructor said that they are finding autonomic nervous system dysfunction to be a very likely cause of many of our patient’s complaints of chronic pain. And floxies have autonomic nervous system dysfunction in spades. So it makes sense that we deal with a lot of pain.

        • Bobby January 22, 2018 at 11:15 am

          Yeah mine is right in the left side of my rib cage and has only gotten worse since last night. Kills whenever I sneeze or cough or even laugh. I’m not really sure what to do about it at this point. Ibuprofens absolutely a no go? What exactly does it do?

          Just very concerned now. He left pinky knuckle pain is still out and about too. Won’t seem to wane like every other pain so far.

        • Ruth Young January 22, 2018 at 4:26 pm

          Absolutely no NSAID’s! The damage fluoroquinolones can do to your autonomic nervous system is made 20,000 times worse by exposing your GABA receptors to an NSAID after they have been exposed to a quinolone! You could convulse and die.

        • Ruth Young January 22, 2018 at 4:29 pm

          That an NSAID can make your reaction 20,000 times worse is not hyperbole. It is the actual number from a medical research study with mice. Some people have no reaction to drugs like Cipro at all until they take an NSAID. Some seem to be able to actually tolerate both at the same time. Not worth the risk. My guess is since you are having a reaction you will not be in the camp that can take the NSAID.

  14. Bobby January 21, 2018 at 7:18 pm Reply

    Is sharp rib cage pain common among

  15. Bobby January 22, 2018 at 4:32 pm Reply

    Oh wow. Had no idea. The first week I took ibuprofen for the first 2-3 days, maybe 4, but that was before I really realized what I was dealing with. I didn’t notice a bad or worsening effect then. But who knows why. I guess I was just lucky.

  16. Bobby January 22, 2018 at 4:38 pm Reply

    Oh I believe it’s true. I’m just surprised I escaped using ibuprofen unscathed back before I realized what exactly was happening week 1 (I’m on week 5 as of today) Is there a certain (average) point where they become safe to take again? Or is it donezo forever?

    • Bobby January 23, 2018 at 4:03 am Reply

      Ruth I know you said Prilosec should be avoided, but is ranitidine/Zantac ok? I think a lot of my rib pain has to do with gastro issues..

      • Ruth Young January 23, 2018 at 5:38 am Reply

        I think anything to decrease stomach acid is probably not a good idea. You need stomach acid to absorb your functional minerals and FQ’s have a chelating effect on minerals, so you really need them now. The other complication is that the symptoms of too much stomach acid are identical to the symptoms of too little. Many floxies actually gain relief supplementing HCL. Not saying you should necessarily try that, but antacids may not be all that helpful.

        There is a point at which the nervous system heals and you can take an NSAID again. I did after the first time I got floxed. But I was very young and it was probably a decade before I took an NSAID. Would I ever chance it again in my life now? Absolutely not. You can do what you want but I think the point of safety, if you heal enough to reach it, would be at years out, not months. After a decade without symptoms it would probably be ok. If I live long enough to see twenty years without flox symptoms I still will not take an NSAID.

        • Bobby January 23, 2018 at 1:15 pm

          Damn, ok. I hear ya and definetely rather safe than sorry. Is it normal for one single joint pain to last days on days relentlessly? This knuckle pain on my left pinky pain feels almost like it’s arthrhitis. I can barely bend it in the morning, and it subsides a little bit during the day but is always lingering, and at night it’s gets worse again, and it’s the exact same story with the left side of my ribs. Nothing on the right side so far. Up until now any joint pain I had would only last a Day or two before subsiding and a new symptom arriving. But now the pain is pretty consistent and in now way getting better. I tried ice and Tylenol extra strength and although it didn’t worsen symptoms, it only dulled it down a barely noticeable amount.

          I’m still waiting for mito q to arrive at my house (was supposed to arrive today but never did) and have an appointment with gp next week where I’m gonna ask to get blood work done.

        • Ruth Young January 23, 2018 at 3:35 pm

          Only time will tell if it is actual joint damage or just pain because things are tight due to the nervous system damage. FQ’s can damage joints and connective tissue. Sometimes the damage does heal. I think the unknowns are the worst part of it. I had joint pain too and it did eventually go away. Try to hang in there and don’t lose hope. Even floxies who did eventually heal often had significant pain and loss of function, which lasted a long time.

  17. Bobby January 23, 2018 at 4:24 pm Reply

    Well that’s terrifying lol. My left pinky knuckle of all things? I can’t think of any strenuous activity I did that would damage that part of my hand of all places. Same with my ribs. Wasn’t coughing a lot or anything. Man this is madness.

  18. Bobby January 24, 2018 at 12:35 pm Reply

    I am definetely convinced now that I somehow tore something in my left knuckle below my pinky. Every joint pain has come and gone except this one, and again. Or could it be arthritis? I know being floxed can mimic arthritis pain but could it actually give you arthritis?

    Regardless, my question is if that’s true, can it heal on its own without the use of anti inflammatories? I’d go to the doc, but I already know are they’re just gonna say rest it, ice it, and take ibuprofen.

    On another note, I had an anxiety attack this morning, first big one in several weeks (although I’ve had brief mini ones that go away within 10-15 minutes every 4-5 days or so) but it was much more manageable and much less intense than the Mac daddy one I had week 2. I don’t know if that’s a sign of me getting better or just me learning to adapt to it. It did suck because I couldn’t fall back to sleep afterwards, but I was otherwise fine after I got up and at least got 6 hours of sleep in.

    • Ruth Young January 25, 2018 at 3:08 am Reply

      FQ damage can actually cause arthritis. There are people who needed joint replacement surgery afterward. It can damage cartilage by the same process it wrecks tendons. That does not mean your finger will not get better with time and I seriously doubt you actually tore anything from something you did.

      The one thing that helped me the most to feel like my Achilles’ tendons were truly rebuilding was a micronized purple rice supplement that I mention in my story. I took it at less than a year out and within two weeks I stopped having tendon pain. I could do anything, even run uphill, pain free. What you need is not so much an anti inflammatory as for your body to get the building blocks to repair the damage. The rice is milled very tiny so that it can get into damaged cells. It is highly nutritious, containing every amino acid needed by the body and tons of minerals and vitamins besides. It has micronutrients and antioxidants in it and they come in a form your body can absorb. But at the end of the day it is just food so your chance of a reaction is less than it would be to many supplements.

      It can cause a Herx reaction, so I started with very tiny amounts, but spread throughout the day. I never herxed from it. A Herx is when your body detoxes too fast and your liver and kidneys cannot keep up with all the toxins that got mobilized. What I did was to put a portion of a teaspoon in my bottle of water about three times a day. Every time I took a drink I shook up the bottle first. My blood pressure went down (I had been hypertensive before Cipro) and my fasting blood sugar came down into the normal range. (Also a pre-Cipro issue.)

      Of all the supplements I took the rice has done me the most good with the least side effects. I buy it from Kare Possick. I found her online. Her phone number is (727) 798-8764. If you mention my name and go on autoship I get a free bottle. I’m just disclosing that. But you can just order one bottle or simply say this website when she asked where you found out about it. I’m not telling you so I can get a free bottle. I am telling you because it helped my body in some pretty dramatic ways as evidenced by the objective measurement of lower blood pressure and lower blood sugar numbers. And I also stopped having tendon pain. Nothing else did that.

      Early on NAC helped a lot. My tendon stopped swelling and feeling like it was tearing. You could try NAC but it has some interactions with certain blood pressure meds and it can cause a pretty severe Herx reaction. If you try it go slow and take it for a short time only. Although some people take it long term, I cannot tolerate it for more than a couple weeks. I did read it can harm healthy biofilms, so you should not just take it all the time. Along with being a kick ass antioxidant it breaks down mucus really really well. They use it with kids with cystic fibrosis. I use it when I get a chest cold or a stuffed up head. Great stuff for that. But it might help your arthritis problem because it is an antioxidant.

      The heart of your problem is increased oxidative stress. This damages mitochondria which then, instead of producing lots of energy for your cells produce very little energy but lots of byproducts of cellular respiration. These byproducts harm more cells, which then also produce more harmful free radicals. NAC can break that cycle. It was shown in a study to prevent Cipro tendon damage. Our tendons and connective tissue are very sensitive to this type of cellular damage from oxidative stress. For me the NAC stopped that damage process in its tracks. But it is far more risky than the purple rice supplement. However, there are not a lot of things shown to help prevent FQ connective tissue damage. NAC is one, also MitoQ and a supplement called Idebenone. I was on MitoQ and Idebenone and still needed to add NAC temporarily.

      Both MitoQ and Idebenone carry their own risks and are not tolerated well by a pretty large percentage of floxies. There is no standard cure here. Backfires to supplements and treatments are as much the norm as having them work for people. Plus, there are people for whom these things do no harm, but also are not sufficient to stop the downward spiral of damage. I can’t tell you what to do. It’s a minefield. You just have to navigate it the best you can.

  19. Bobby January 25, 2018 at 12:55 am Reply

    And yet another question, so sorry Ruth lol. But something else dawned on me. Have many floxies with PRE flox general anxiety disorder and/or depression recover normally? Or at least back to their pre flox state?

    I did have some problems being anxious and nervous in the past, just never to the extreme degree I’ve been post flox.

    • Ruth Young January 25, 2018 at 3:39 am Reply

      You absolutely can recover 100% from the psychological symptoms and maybe even come out of this better than you were preflox. I never had an anxiety disorder but I had depression, a couple of very serious bouts with it. During the worst one my brain completely stopped sleeping for two weeks straight with very poor sleep for the two weeks prior to that. I was seriously going out of my head. I was so desperate to get some rest I was contemplating suicide. This was in 2001! The job I was at was just really a lot of work, and I think it was too much for me.

      Even when it was not that bad I always knew there was something about my brain that did not handle stress as well as most people. I would get overwhelmed quicker. When my young friends in the tourist town where I grew up were working three jobs in the summer, putting in 80-120 hours a week to make money for college, I started feeling just wretched at about 60 hours a week. By fall every year I was a mess, just coming apart at the seams. It would take me months to feel ok again.

      And as an adult, I have actually chosen part time and PRN work because when I work full time in a professional capacity where there is a lot of stress and responsibility I start to feel sad literally all the time. I can work 40 hours cleaning stuff, but I cannot work full time in either career I am licensed for (teaching and physical therapist assisting.) When I had to do so in clinicals and student teaching it did not go well, and I managed to pass each experience but my cooperating teacher or clinician noted serious problem with my demeanor at work or my ability to make good decisions in each instance. It is hard to perform well on the job when your main focus all the time is just on trying to keep it together.

      But when I work part time I feel great and all my employee reviews are glowing. I just cannot do what most people can handle without a second thought. My doctor knew ALL of that and still gave me a medication known to cause severe psych symptoms.

      But I would say post flox my capacity to handle stress is increased. There have been some times when an uptick in symptoms will decrease it, but at this point, in the long normal window I’m in being almost symptom free almost all the time, I know that I actually am more resilient than I was. When I feel things building up on me I take a break and use the relaxation and meditation techniques I used after I got floxed. I have learned better coping skills and to listen to my body better.

      I also take Idebenone now. I take 50 mg usually twice a day– with breakfast and with lunch. I started taking it early on because I found a study saying it could prevent Cipro tendon damage. It also had a side effects profile similar to an SSRI: anxiety and insomnia. I had both in spades. I hated to make myself worse. But I took it anyway because my tendons hurt. Within fifteen minutes the Cipro anxiety was cut down enough that I was functional. I actually had been so bad I didn’t know how I was going to go to work. I pretty much was going to take an Idebenone and then call them and say I could not make it. But suddenly I was functional. Not completely comfortable, but not feeling like I needed to crawl out of my own skin anymore.

      As time passed and the Cipro anxiety was not so common I sometimes could skip an Idebenone and feel ok. But I kept taking it because I noticed something else: the low level depression I had fought every single day of my life was just gone. I was not expending any energy dealing with that. I was free. I felt like I had when I had went on Prozac but Prozac gave me side effects and Idebenone had none. I still take Idebenone. I have tried going off it and sure enough the depression comes back, but maybe not quite as bad as before. I think I was really low on magnesium, calcium and zinc prior to getting floxed and supplementing those things. I think low functional minerals was also hindering my ability to cope with life.

      So I take Idebenone still, and because I take it I actually, though still working part time, am taking on jobs with more hours and more responsibility than I was taking on preflox. Because I can now! I am a more productive human being because of those things: the addition of Idebenone, supplementing magnesium (which my body desperately needed even preflox) and my having learned some great coping skills through having to deal with being floxed.

      Floxie anxiety is not normal anxiety. Your body is anxious but you actually are not. You cannot reason yourself out of it. It just happens until it decides to stop happening. Your earlier tendency toward anxiety may have been due to your own thought patterns. My guess is you will learn better thought patterns as you survive this. You will likely find yourself mentally healthier when it is all over.

      One warning though– every female floxie who has told me they tried Idebenone absolutely loved it. Every male floxie who has tried it and told me about it has absolutely hated it. They say it makes them feel weird. The women say it makes them feel better. There may be a hormonal thing going on there that it just does not do the same thing for men as it does for women. You would still get the antioxidant effect, but it might make you feel weird and spacey.

      • Bobby January 25, 2018 at 5:02 am Reply

        What about alcohol? I’m not talking getting drunk off as much as I can drink, but will there eventually come a time I can have 1-3 social beers with my friends again without having anxiety and/or depresssion?

        • Ruth Young January 25, 2018 at 5:45 am

          I am able to drink again but my tolerance is greatly reduced. It won’t actually harm your gaba receptors because alcohol acts on gaba-b instead of gaba-a. I think it promotes healing.

          When the alcohol downgrades the gaba-b subunit, I think the body makes repairs to some of the a subunits in order to put things back in balance.

          I think when the FQ took out some of your gaba-a receptors your body gave you extra gaba-b receptors. This can make you a lot more receptive to the effects of alcohol. The b unit seems to be able to replace itself faster. That’s why alcohol withdrawal lasts a lot less long than benzodiazepine withdrawal. This is all just my theory. I have nothing to back it up with except my own experience.

          Last year I got drunk at the Racine Zoo by accident. They hosted a teacher’s night and served spiked punches with no indication that they were alcoholic. I had what they had labeled as “Lesson Learned Lemonade.” I was thirsty so I slammed a big cup. At first I felt super relaxed and I thought that my nervous system must really be healing. Maybe it was that walk on the beach… and then I felt it. I knew it had been alcoholic. I ended up drunk off my ass, but not so bad that I couldn’t say “gamma amino butyric acid,” ha, ha. I got a brief relapse from that experience, of symptoms I had not had in a long time. After that ended my base line seemed higher.

          So I think alcohol is not completely bad. However, it can devastate your gut microbiome, so I am very careful about it. I had a tiny tiny bit of Bailey’s at Christmas. I enjoyed it. Other than the holidays I abstain from alcohol for the sake of my healthy flora.

          Although it won’t stop your nervous system from healing, remember that psych symptoms can also stem from an imbalance of healthy vs. unhealthy microbes. Alcohol can worsen that situation considerably so for the foreseeable future it is better to abstain. Farther down the road you will probably be able to have a beer now and then with no ill effects.

  20. Bobby January 25, 2018 at 12:34 pm Reply

    I’ve had weird experiences with alcohol up to this point, and then grew concerned when I’ve read other stories where alcohol didn’t have much of a big ill effect on floxies. I drank with a buddy who had been visiting for the holidays three days after I was floxed (before I really realized what was happening to me). I only had one IPA and two colors lights (which usually would’ve been nothing for me) and the next day I woke up really nervous and anxious. Then the next night I had four miller lights and was fine the next day up until night time where I first got the sound and light sensitivy and become so anxious and nervous I had to leave the bar the next night after one shot and one beer and go for a walk. I eventually got myself together and went back only to drink water for the rest of the night.

    The next week we went out for New Years Eve and I had four beers throughout the whole night (11 PM-4 AM) and was drinking water in between. I was fine, but then again woke up with the same anxiety AND depression, although it didn’t last as long this time.

    I haven’t had a sip of alcohol since, but it does make sense about the gut. At the time my stomach felt…weird. I wasn’t nauseas, but my appetite was out of whack. I could eat, but only when I felt it necessary. It didn’t make me sick or anything, I just didn’t care. I had absolutely no desire to pleasure eat. I would force myself to eat to maintain weight and just because I know I had to. Again, wasn’t because I was sick or throwing up, I had a bit of a stomach ache and some cramps that would come and go, but nothing major. just didn’t have much incentive. I was on amoxy clav before the levaquin, and amoxicillin about a week after I was floxed to get rid of the remaining effects of (at least what I thought was) the remaining symptoms of my sinus infection. I then started using pro biotics for the first time in my life. I’d say my old appetite is about 75-85% back and my stomach overall feels about 75% better. Is that a good sign I’d be able to handle a couple beers a bit vetter. I’ll be at 6 weeks floxed this upcoming Monday.

    • Bobby January 25, 2018 at 12:42 pm Reply

      Now that I’m remembering, I should also add that when I did drink it felt a bit like acid going down the throat and then landing in my stomach. It got half way better after the second beer, but REALLY triggers the fatigue and a bit of dizziness. But this is also when my fatigue and lightheadedness were relentless and constant. Also the same with the pressure headaches I would get in the front of my face and behind my eyes. I chalked it up to remaining sinus pressure and symptoms at the time.

    • Ruth Young January 26, 2018 at 7:15 am Reply

      In my opinion you need to leave the drinking alone for a lot longer than six weeks. It devastates your microbiome. You just took a couple different types of antibiotics, one that is like an atomic bomb to your healthy flora. I have a quarter to a half of a drink once a year (with the exception of the incident at the zoo) and only recently switched back from the low alcohol Communion wine. I was very very careful of alcohol.

      One doctor I saw post flox said that you can actually get “floxed” from something as supposedly benign as Amoxicillan if your microbiome is in bad shape to start with. When that balance in the gut gets destroyed, chronic, systemic illness can be the result.

      Your prognosis hangs in the balance based on the things you do now. If you give your body every possible chance to repair itself it probably will. I actually swore off sugar for six months after I got floxed and I have always had a problem with sugar. But I knew that it could harm my chances. I didn’t want to feed the “bad bugs” and tip the balance even more out of my favor. Your diet needs to be impeccable for at least the next six months if you want to give yourself the best possible chance of making a complete recovery.

      Your healthy bacteria play in role in your body being able to make ATP (energy) for your cells. That is the theory of world renowned geneticist Sterling Hill, who has been studying the connection between genes and nutrition and chronic illness. There are bacteria in your gut that help your body assimilate B vitamins. Without them, you can take all the B vitamin pills you want, but your body cannot use them. Your Krebb’s Cycle (the way your body manufactures ATP) needs B vitamins. See how messing with your gut right now can screw you up? That is super over simplified, but basically I am saying, alcohol screws with your gut and right now the last thing you want is anything screwing with your gut because it plays a much bigger role in overall health than was previously known.

      I just got tests at the doctor showing my kidneys and liver were working ok and I did a fasting blood glucose as well. They did some scans of my heart and brain also to rule out actual cardiac issues or a stroke. It all came up fine.

      Definitely get the liver checked out. MitoQ becomes an oxidant if your CYP450 pathway is not working. That is the same pathway that gets blocked when you eat grapefruit. I am not positive that grapefruit could affect the functioning of MitoQ in your body, but I would err on the side of safety there. I could be wrong about the grapefruit– it was not mentioned in the study I saw. The study simply said that without CYP450 working MitoQ actually harmed cells. I guess your symptom of that is that you will start feeling like crap. If it is working you should actually feel better.

      p.s. Caffeine tolerance will come back. Mine has, for the most part. It used to make my skin burn when I ate dark chocolate. I can tolerate caffeinated beverages now. I do not overindulge because caffeine can be hard on your adrenals and it can dehydrate you. The good news is it actually can stimulate healing of GABA receptors (taking stimulants can push your nervous system back into balance) but it can contribute to adrenal fatigue. So like almost everything for floxies, there is a downside. Adrenal fatigue is nothing to mess around with. I would avoid caffeine for now.

      I switched to an non-fluoride toothpaste. Fluoride is a neurotoxin that is not actually proven to do anything for your teeth. So why use it? Some floxies are helped by avoiding fluoride. Depends on your exposure to it, I think. If a person was already very over exposed to that toxin, the fluoride in the FQ alone could have caused them to be floxed. This is not every floxie, but even for the non-floxed I can see good reasons to avoid fluoride and no compelling reason not to avoid it.

      • Bobby January 26, 2018 at 12:00 pm Reply

        Any other tips when it comes to diet? I’m a notoriously and ridiculously picky eater. That’s been my fatal flaw ever since I was a kid. I’ve tried to clean it up a bit. I’ve of course haven’t had any caffeine or alcohol. I’ve been taking pro biotics. I’ve basically been living off of bananas and fruit cups in the morning, bologna sandwiches in the afternoon, peanut butter and crackers with milk in the evening (weird combo I know lol) and maybe another banana at bed. That’s the regular. I’ll also have Mac and cheese, pasta, roast beef, roast chicken both with mash potatoes and gravy and green beans.

        I’ve been avoiding excess sugar and sweets to the best of my ability. The other day I had 3 Oreos and I think it triggered my anxiety the next day a bit, so I stopped and have been feeling better. I’ll indulge in junkier food (pizza, chicken fingers and fries) maybe 1-2 time a week as a treat and haven’t noticed any ill infects so far. Have floxies with less than perfect diets seen recovery? I know you said before you ate pretty much what you wanted except sugar for six months.

        I don’t think I can go full organic and vegan and all that.

  21. Bobby January 25, 2018 at 4:30 pm Reply

    And yet another thing does caffeine tolerance eventually go back to normal as well? Obviously take your time answering as I got nothing but all the time in the world. Lol. And about toothpaste, I use Colgate total. Does the fluoride in that really cause more devastation? I haven’t noticed anything yet, and I obviously use it everyday, but it just now kinda dawned on me.

    How e

    I also have a drs appointment Early Monday morning, and am wondering what blood tests I should absolutely request to rule out other lingering issues. One I think I’m going for is ANA. That red face I told you about from showering has turned into something that looks like a Malar rash. Knowing being floxed can cause an autoimmune disease is pretty damn terrifying and I’m almost afraid of opening that can of worms…because then what? I can’t really utilize the proper medicine. I had an ANA test and some of the other big ones for auto immune disease two years ago and they all came up negative. Do you have any other suggestions?

    And last but not least, mito q. Should be arriving at my house any day now. I’ve read that it helps a lot of floxies, but what are the potentially bad side effects?

  22. Bobby January 26, 2018 at 12:16 pm Reply

    *Just put this here because it’s easier to see and to add

    Any other tips when it comes to diet? I’m a notoriously and ridiculously picky eater. That’s been my fatal flaw ever since I was a kid. I’ve tried to clean it up a bit. I’ve of course haven’t had any caffeine or alcohol. I’ve been taking pro biotics. I’ve basically been living off of bananas and fruit cups in the morning, bologna sandwiches in the afternoon, peanut butter and crackers with milk in the evening (weird combo I know lol) and maybe another banana at bed. That’s the regular. I’ll also have Mac and cheese, pasta, roast beef, roast chicken both with mash potatoes and gravy and green beans.

    I’ve been avoiding excess sugar and sweets to the best of my ability. The other day I had 3 Oreos and I think it triggered my anxiety the next day a bit, so I stopped and have been feeling better. I’ll indulge in junkier food (pizza, chicken fingers and fries) maybe 1-2 time a week as a treat and haven’t noticed any ill infects so far. Have floxies with less than perfect diets seen recovery? I know you said before you ate pretty much what you wanted except sugar for six months.

    I don’t think I can go full organic and vegan and all that.

    I also want to say that my physical symptoms such as my pinky pain and rib pain has subsided significantly but my anxiety has creeped up again the last few days. Not as intense as before but a bit more constant now. My sleep pattern is also out of whack, again. I’ll have to take two melatonin 5mg each and an antihistamine to fall asleep and then I’ll wake up six hours later and can never fall back to sleep. It gets a little better day by day though. I unfornunately feel there’s no way of avoiding taking the ranitidine because I can’t take a big deep breath lying down and it’s the only thing that seems to relieve it even a little (I did have this for a while pre flox).

    My fatigue also has returned, not as bad as before but still constant and persistent.

    I realize this is average for cycling to recoccur but if they’re happening not as bad as before, does that mean healing is on its way?

    • Ruth Young January 26, 2018 at 2:21 pm Reply

      I healed without completely cleaning up my diet. I didn’t go completely organic, gluten free and all that. I have kind of avoided wheat products though as wheat is all sprayed with glyphosate (Round Up) and that is bad. Glyphosate was an antibiotic before it was an herbicide. That is not to say I never eat pasta or bread. And I was not huge into either even before I got floxed because my weight can be kind of an issue and it would have been a huge problem had I been eating tons of pasta.

      I think the key is listening to your body, and basically just trying to do your best to eat a variety of food. Some floxies have all kinds of food intolerances and can barely keep anything down or just no appetite. That never happened to me, or very rarely.

      I did think about what had been stripped out of my body and try to eat foods that would put it back. I ate things high in functional minerals. Foods with both calcium and magnesium helped me. I did eat a lot of dairy. Lots of yogurt and cheese. Those foods made me feel better. Might not work that way for you.

      Oranges made me feel really good early on. Berries too. I am sure the micronutrients in those foods were better than vitamin pills. I ate a lot of watermelon last summer and my body seemed to love that.

      I eat a lot of fermented and cultured foods. I like kefir. You can do non-dairy forms of kefir. Generally speaking, it is better than kobmucha, which can have heathy cultures but can sometimes contain a lot of yeast too. It is kind of a wild ferment. I just found that out so although I still have it I have been drinking less of it.

      I ate a lot of wild caught salmon, because it is high in magnesium. Avoid farmed salmon, obviously. Sardines helped too as they are high in calcium and the oils in sardines are exactly what your brain needs. Neither fish is high in mercury at all. I have backed off on other types of fish because of the mercury issue, but once in a blue moon I have a fish fry.

      I ate a lot of veggies and salads and I found that the more veggies I ate the better I felt. A steak now and then really seemed to help restore me to feeling good– but we buy excellent meat not the grocery store crap. High quality food is important. Meat from animals who lived the way animals should until they were slaughtered, not animals crammed into filthy crowded pens. I never worried a lot about antibiotics in meat because that is technically illegal in the US to send an animal to slaughter with antibiotics in its system. Other countries, especially third world countries, it could be an issue. But with low quality meat I think about the reason they would be feeding it antibiotics in the first place– the filth and the germs. Our systems are not up to dealing with any type of contamination. Maybe some flares people get are not from the subclincial dose of antibiotics (if they are even there) but from the bacteria. Cook it less than completely and maybe a normal microbiome would knock down what was missed, but ours can’t. For awhile I avoided things like salad bars at restaurants and even today “if in doubt throw it out” is my mantra. I don’t risk things I might have eaten prior to get floxed. I do now eat at salad bars. I know they are dangerous but this one restaurant has a really incredible salad bar and it is hard to say, “I can’t risk that,” while my husband enjoys it. I do not buy precut fruit though. That is super dangerous.

      So can you heal without eating perfectly? I am proof you can. Do you have to focus on the foods I did? Definitely not. Everybody’s body is different. I know people who feel worse when they eat vegetables (probably due to oxalates) and some people who will not touch meat. You gotta go with your gut, pun intended.

      Oxalates are something to look into since floxies lose the bacteria needed to get rid of them and because of our leaky gut (most floxies get leaky gut) we absorb a lot more of them. When the junctions between our cells are tight we absorb maybe one to two percent of the oxalates we eat. When they are not it can be over fifty percent. Oxalates are not actually bad– we need some of them. They are like nature’s antibiotic. But if we have too many that is when it is a problem. They can even cause kidney stones. You can look up leaky gut and oxalates and find info. There is a low oxalate group on Facebook.

      Do you have to go low oxalate to heal? Well, I am proof that you don’t. But some people do find it helps.

      I just was concerned that you were going to keep drinking and that would erase a million healthy choices you were making and cut your chances of healing well by a huge percentage, depending on how much and how regularly you drank. My father had a drinking but problem and he drank while on antibiotics, got sepsis and eventually died. He had the cleanest diet (except for the alcohol) of anyone I know. He got regular exercise. He had a great attitude about it when he had health problems and faced some pretty serious health issues with a lot of courage. But he never got rid of the drinking. He would stop for awhile. He would cut back at times. But he could not leave it alone and I believe, had he just stopped it entirely when he was fighting that kidney infection he would still be here. So I may have been too hard on you thinking of him.

      There were other things about his drinking too– in pictures of him taken when I was young he looks so happy. He had such joy. He never had that look of happiness and joy on his face again after a certain point. Alcohol is a depressant and drinking too much also messes with your body’s ability to detox. His brain was not healthy. It could not have been. I think the drinking caused his bout of pancreatitis and may have played a role in his heart attacks. He was just struggling along and definitely not happy, and if he could have given up that one thing and kept doing everything else right he would likely have been healthier, happier and would likely still be alive. Unlike most alcoholics he had interests and hobbies– he didn’t just sit around and drink. But whatever he did, he drank while he did it if he possibly could. So I guess I reacted kind of negatively to your descriptions of social drinking because it made me think of him and how he ultimately lost his fight for health despite doing everything else right.

      This does not mean you can’t someday be a social drinker again. Not everyone who drinks does it to excess, and you can probably recover enough eventually to drink in moderation safely. But for a floxie what is tolerated by everyone else is excess for us, in the early stages.

      And we all have our demons. Mine is sugar and I know if I could just leave it alone I would be better off. I know my sweet tooth often ends up negating a thousand of my healthy choices, but like my father I keep coming back to it. But I did heal to almost 100% from getting floxed, sweet tooth and all. And I was able to leave it alone for six months and I think that was helpful to my body when it was particularly damaged. It seems more resilient now.

      I think that your cycles are feeling less intense and your finger feels a bit better are huge and awesome signs that you are healing and moving in the right direction. It is all about striking a balance between accepting that an antibiotic has caused you a systemic chronic illness that requires treating your body with kid gloves for awhile and at the same time not letting worry about that illness ruin your life or make you entirely put your life on hold until you get to 100% healing.

      I had a great life before I got floxed and I have a great life now. I had some uncomfortable and unpleasant moments post flox that I would rather not repeat. But I kept living my life, doing the things I wanted to do, but with some modifications. At this point I am back to living pretty much exactly as I did preflox except that preflox I did not know about kefir and I am actually a bit better at controlling my sugar habit now. Not perfect yet. But better. And I feel emotionally and spiritually healthier than I did. Actually, my body feels better than it did preflox.

      There were reasons I was susceptible to getting floxed that went beyond just a genetic predisposition. I was magnesium deficient. I had not been taking care of my body. I was crash dieting and exercising way too hard, getting frustrated and then bingeing on junk food for comfort. I hated myself for being fat. And I took everything my father said about being disappointed in me to heart (a lot of which was not even rational) and it was destroying me. Having now experienced some horrible effects of floxing on my brain and nervous system I now understand what it was probably like for him living in a body depleted by alcohol, with his brain poisoned by toxins his liver could no longer clear. I have peace now in my heart because of this understanding.

      I also, since getting floxed, have found some of the dearest friends of my life in other floxies. Some of these friends not only got floxed like I did, they had similar rocky relationships with their fathers growing up and we support each other today. That was something I needed, the support of others dealing with what I was dealing with. It came to me through this horrible experience, but through this horrible experience it is like I gained everything I needed.

      So just keep plugging away, doing the best you can, and researching all you can to make informed decisions. You will do fine, and when this is all (or at least mostly) behind you you may feel as I do– that despite how bad it is to get floxed I would not now go back and avoid it even if I could. I have come out better and stronger and more blessed in the end.

  23. Bobby January 26, 2018 at 6:56 pm Reply

    Lol, no no. I was just seeing when I could possibly return to social drinking down the line, but I’m in no rush for that.

    When it comes to listening to my gut, it becomes a very confusing thing. It’s hard to tell what answers the right one. For example, the oreos. Sometimes I wonder if my relapse was inevitable, or if the Oreos themselves triggered it.

    Yes my symptoms have relapsed. The last two weeks I felt much better, with few gripes at a time that weren’t too terrible to get through. But then all the sudden the left pinky and rib thing happened, then the anxiety and bit of depression. The anxiety and depression aren’t AS horrible as they were (at least not yet). But it feels like they’re lingering it on a bit longer than before. Longer, but less intense. Does that make sense? Is it normal?

    Also something else I should mention. The floaters and tinnitus. They both are just barely happening to me. And I mean barely barely. Essentially since the beginning, they both would come very briefly (like literally a minute or two) and then go away. This happens maybe twice a week. Also the other day I woke up with my left knee burning. Like hot lava was being poured onto it and then started dripping down. I started rubbing it for about a minute or two and then it went away. Didn’t bother me again the whole day. My concern with these symptoms is the question of whether or not they’re “fun” little mini symptoms and that’s all they’re gonna be, or if they’re just a small preview of what’s yet to come..

    What really worries me about this relapse is my stomach. Up until a couple days ago it felt almost normal. Now it feels really worrisome. My appetite is sort of back to meh again. I don’t know if it’s the ranitidine or what, but other than that I really haven’t been doing anything different. Is that also normal?

    I may have spoke too soon before about the symptoms not being as harsh. My fatigue is back in full force as I’m just now finishing the work day. I also feel pretty tired and borderline nauseas.


    • Bobby January 26, 2018 at 7:00 pm Reply

      Like when I was just standing and talking to my co-employee, all the sudden I felt really weak and almost dizzy. Have no idea why. And even when I had fatigue before, that wasn’t a very apparent symptom…

      • Bobby January 26, 2018 at 7:23 pm Reply

        And crap. Low blood sugar. What can be done about that?

        • Bobby January 26, 2018 at 8:18 pm

          Eating peanut butter and crackers now, food taste odd. Almost like peanut butter is sweet. Any clue what’s happening?

      • Ruth Young January 27, 2018 at 7:58 am Reply

        I got that sudden fatigue early on. Your body is dealing with a lot right now.

        It is normal for symptoms to go up and down a lot. That the joint pain comes and goes is a good sign. When my tendon was actually damaged the pain did not go. But tightness around my ankles and knees would fluctuate. Today those joints are fine. So there was not actual damage. I think my right ankle had some damage to it, as it would swell and get painful with use but it does not bother me now. Two summers ago while I worked a cleaning job it would get pretty painful at times. Now I can work really hard carrying heavy stuff on fireworks shoot sites and my ankle never bothers me. I can walk as far as I want, even hike. So it healed. If I could have actual joint damage heal at my age, then you should not panic about anything being permanent yet. Even my Achilles’ tendons, which got quite bad, are normal now. I have had no indication that any damage or weakness remains. And for you, anything that is cycling so that it comes and goes, will likely eventually go away for good.

        I had taste disturbances. Well, I was lucky, food tasted better than usual. Taste disturbances are seen in people going through benzodiazepine withdrawal so it is possible they are from loss of GABA-a receptors, a condition that does repair itself over time because we have neural plasticity.

        Your doctor will help you if you do have issues regulating blood sugar now. Kind of common in floxies. It can also reverse over time, but does not always. Another floxie commenting on this said that the drug metformin is actually helpful. That may be true.

        There was an earlier FQ pulled from the market because it caused such terrible issues with blood sugar regulation. You just have to get tested and deal with things as they come. Just because a lot of floxies have that issue does not mean you will. Just because some flox issues can be permanent does not mean they always are. They frequently are not. Quite frequently people have no permanent effects at all– but healing can take a long time.

        • Bobby January 27, 2018 at 12:03 pm

          Ruth, do you know what is causing my sequences of low body temperature? I could be in my 70 degree house with a t-shirt and pants on and become freezing for no apparent reason.

          The insomnia is crazy too. I don’t know if it’s a bit self induced. But I have to take two melatonin 5 mg pills AND a antihistamine to fall asleep. Even then it’s only for 6 hours, maybe a little more, and then I wake up. And no matter how hard I try I can’t fall back to sleep. All these symptoms combined and all the symptoms I’ve told you about in the past just seem to keep piling up and up. It feels very never ending and hopeless. In your most brutally honest opinion do you truly think I could very well be a goner? Or have you seen others like me find a way out of this? I’m going freaking nuts.

          And to make it worse, NO ONE believes me. Not my friends. Not my family. They all just think I’ve lost my shit.

        • Ruth Young January 27, 2018 at 12:37 pm

          You are absolutely not a goner. I was cold all the time and so was Lisa, and yes symptoms do keep coming back for a long time. But most people get well or at least see enough improvement to go back to living a normal life.

          Why don’t you find me on Facebook and we can talk there. My black cat is my profile pic and I am located in Wisconsin, as I told you. Find me there and then we don’t have to take up this entire thread and we can talk more privately, even doing voice messages. Facebook has a very nice voice message feature in Messenger.

  24. Bobby January 27, 2018 at 3:07 pm Reply

    Yeah I definetely didn’t mean to make this the “Bobby” show. I’ve just been so scared and literally have no one in my personal life that fully believes levaquin did this to me. Sorry about that guys.

    Ruth do you have an e-mail address instead? I wiped my Facebook a long time ago (job opportunity thing as well).

    • Ruth Young January 27, 2018 at 4:00 pm Reply

      I would rather do the FB thing because it is so convenient for me but if you would rather do email just ask Lisa, the admin of this site, for my email and she will give it to you. I will give her a heads up that she can do that in case she misses this post.

      • Bobby January 27, 2018 at 4:09 pm Reply

        How do I get a hold of Lisa? Lol

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  26. […] Follow The Barefoot Aya on Facebook, Twitter, and Instagram. Photo Credit: my mom Related Content: How to Find the Best Quality Probiotics | The Barefoot Aya Floxed Doctors are Taking Fluoroquinolone Toxicity Patients | Floxie Hope The Mystery Illness: Part 1, Symptoms | The Barefoot Aya FQ Antibiotics and Memory | Floxie Hope […]

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