Melissa’s Story – Floxed Twice

I was floxed twice.

The first time was in July of 2016 for a suspected UTI. There was no UTI. The bacterial culture came back negative, but no one ever called me to tell me to stop the antibiotics. I finished the entire prescribed dose of Cipro. Something was happening to me but I never attributed it to the Cipro until almost 2 years later when it happened again.

Like many others, I bounced around to doctor’s appointments in search for answers. I had written down a list of my symptoms at that time to bring to my rheumatologist’s appointment:

1st time floxed (August 2016):
– random episodes of dizziness
– eye floaters
– tinitus (I already had it in one ear due to some unilateral hearing loss, but developed it in the other ear)
– depersonalization
– anxiety and feeling of hopelessness
– feeling very down
– random bouts of crying
– tendon pain all over
– joint pain
– feeling that my bones were trying to break out of my skin
– intense fatigue
– weakness, like my legs were heavy and couldn’t sustain my body
– intense arm and leg pain
– calf cramping
– terrible insomnia
– heart racing, beating hard and fast
– hair loss
– dry eye
– liver pain (started months later)
– what I thought was heart pain…likely costochondritis (months later)

To compare, 2nd time floxed (May 2018)
– all above symptoms
– vibrating sensations, primarily in legs, arms and face
– face numb (not positive if it was the quinolones or not)
– nerve pain/tingling/numbness all over body
– muscle twitching

New symptoms kept showing up each week. The symptoms were cyclical. I could go weeks with the horrible pain and fatigue, and then it would taper for weeks at a time to almost nothing. Each time I’d feel better, I thought it was all gone for good, only for it to return again. I never took magnesium because I didn’t know to. I did start to eat cleaner (did the Whole30 diet for a month, ate and still eat gluten and dairy free and overall was conscious of what I put into my body). The only thing I took was Vitamin C, D, and a probiotic. I never took NSAIDs, thankfully, as I now know that could have made my situation worse.

Four months later at the end of October 2016, my husband and I went to the beach in Florida. I remember that I was at a peak of pain, sitting on the airplane, feeling anxious and wanting to cry, every part of my body hurt. At one point a few days into our vacation, after being in the ocean for hours each day, I felt like I was going through a pretty intense detox. I was at the worst of all of the pain and sensations of the entire past few months. I cried to the pharmacist, begging for something that could provide relief. I left empty handed which was not a bad thing. The next day, all pain was gone. Just like that. The anxiety was gone. My body felt strong. And it never returned to that magnitude again. When people say it has to get worse before it gets better, it’s really true. Embrace the bad because it will get you to the good!

What remained (now looking back):
– random joint and tendon pain that would crop up here and there
– dry eye cleared up but took a few extra months
– my left hand still tingles at random
– I continued to play soccer, and my left calf would cramp up so bad within minutes of playing, so badly that eventually I had to stop playing. This only started after Quinolones.

The second time I was floxed was in May of 2018 for a suspected sinus infection that I never did have. I took that first Avelox/Moxifloxacin pill and felt something was wrong as I woke up that night unable to straighten out my knee. I took the second pill the following day. I began to notice my legs were incredibly weak…it was difficult to walk. I went to the ER, and they told me to stop this antibiotic immediately. It was helpful that nearly every doctor and pharmacist that I talked to believed me, or had heard of this as a possible reaction to Quinolones. I’m thankful for that. One pharmacist stated that this antibiotic is becoming a real problem the longer it’s on the market. People think they are fine taking it once, twice, ten times, until suddenly the ‘bomb’ goes off in your body. I’m glad recognition is starting, so that this antibiotic class can be reserved for times where absolutely necessary.

Everyone assumed that since I was off the antibiotic, my symptoms would improve. But that was when everything got so much worse. I had less intense cycles of pain this time around. This time my symptoms were more steady (from worse to less worse, but never gone and mainly bad). That made me wonder if this time my symptoms would become permanent. The only thing that I could say that was better this time compared to my first floxed experience was that I didn’t have the intense flu-like fatigue, maybe because I stopped after two pills this second time around, or maybe because it was Avelox instead of Cipro. I was tired, but not the same intensity. One day it clicked, that this is what happened to me 2 years prior. It was frightening to know that I did this to myself for the second time, and for no good reason. The effects are cummulative and I wondered if maybe I wouldn’t pull through this time.

The insomnia kicked in about 2 weeks in. I hated it. Heart pounding and racing in the middle of the night, unable to sleep…but I knew this time what was happening to me so I would tell myself that I had to ride this out. The anxiety and random crying was so uncharacteristic of me, that I could remember crying and telling my husband that this was not me, that this was the antibiotic, and that it would pass. It did. I never had mental health issues before taking Quinolones, and I haven’t since. If you are suffering from the anxiety, I think it’s one of the worst of all the symptoms…it really will pass. You WILL feel normal again, especially if you didn’t suffer from it before. Just keep reminding yourself, it’s not you, it’s the anbitiobics!

About two months in, I started losing so much hair (for you women who have had babies: just like post-partum hair loss).

Three months in, I started with the nerve pain. This time, like hot lava being poured on my head. My trigeminal nerve on both sides of my face would burn. My spine would burn. My abdomen would burn. My face and scalp would go entirely numb and tight, like I was wearing a mask. This was a frightening new symptom. Crawling and tingling all over my body from head to toe. I kept thinking I had insects crawling on me. My skin felt like it was vibrating all over. I knew that because I was floxed for the second time, I would need more time to heal than the first time. I would give myself daily pep talks, willing myself to be better and stronger. God has taught me many things through this, and patience was one of them! I sure did lean on Him during these months.

What I took this second time around: Vitamin C, B Complex, Magnesium Glycinate, Iodine (tiny amounts and for a short amount of time) to help flush out the excess fluoride, Vitamin E (short amount of time), eating well, going to the beach again (replenishing those lost trace minerals). I also did epsom salt feet/leg soaks every single night for about 30 minutes for months. I had read that it is a great way to replenish magnesium, and I would notice if I missed a day or two.

I never sat around and felt sorry for myself…for long. I think I cried every single day for 5 months, but I made myself stop each time. And I never cry about it anymore. I knew this wasn’t the real me, but what the Quinolones were doing to me as they messed with every part of my body and mind. If you have been floxed, you know that Quinolones affect you at the cellular level. Your mitochondria is destroyed. Everything is poisoned. But God made our bodies to heal…give it time. I knew I was getting better when for two days, just like the first time, everything got so much worse. I couldn’t get up off the floor to put one foot in front of the other. It was pain, fatigue, crying, but strangely I felt like “this is a good thing! I’m almost at the finish line!”. And it was true. Following that was the biggest leap of improvement in the entire process. Just after that we went to the beach and I’ve been so much better since.

I know what it’s like to feel like your body is dying from the inside out. I didn’t want to appear weak, but I did. I have four young kids, a loving church family, and an amazing family…they saw me at my lowest which is incredibly humbling. My husband gave me so many foot massages, I could cry thinking of how wonderful he was to me during that time. And oh, my family and friends! I had meals, help at home, and more. A small glass of wine before bed from time to time really helped my overactive system (I have read so many people saying that it helped, and it’s weirdly true). You have to keep smiling, keep moving, keep hoping, keep praying. The months and years seem long and the future uncertain, but most people heal eventually. Maybe not exactly as you were before, but pretty close! That sounded upsetting when I’d read that people after one or two years were “85%” or “90%” healed. I wanted to be 100% healed! And I understand the frustration of not being able to do everything you did before. I was very active and there is a lot I still can’t do, but there is a lot I can do. Honestly, I think you will be so relieved when the initial horrible symptoms are gone that you won’t mind being 85% healed as much as you thought you would. You’ll be grateful.

I remember the first time I took a long walk, and realized I didn’t feel like dying after! It felt like such a gift. It almost seems silly now, now that I’ve improved so much. I sometimes ask myself, did I just even go through that? TWICE? The reality is that my body is still healing, and I don’t know if I’m in a better cycle, or if I’m good go to with continuing on the healing…but just having these days gives hope that I’m on the healing track. I can handle life like this. I’m nearly at the 6 month mark! It’s only going to get better from here.

And as some extra advice, once I realized just how frightening the stories on google were for this, stories of permanent damage and the medical articles on Quinolone Toxicity and what it does to the body, I stayed off for good. When I felt low, I would pray…our God hears and cares about our suffering. And then I would read recovery story after recovery story on Floxie Hope to remind myself that I too could heal eventually. I’m so glad this site exists! The recovery stories really gave me hope, but also helped explain what was happening to me. The first time I went through this, I had no idea what was going on with me and that was disheartening in its own way. This time, I did, which made it that much easier. Be patient. Keep busy even in pain and fatigue. Walk as much as you are able, and push yourself a little more each day. Allow people to be around you and even to help you.

Thank you for taking the time to read this. If you are suffering with Fluoroquinolone/Quinolone toxicity, it will get better!

* The story above is truthful, accurate and told to the best of the ability of the writer. It is not intended as medical advice. No person who submits his or her story, nor the people associated with Floxie Hope, diagnoses or treats any illness. The story above should not be substituted for professionally provided medical advice. Please consult your doctor before trying anything that has been mentioned in this story, or in any other story on this site. Please also note that people have varying responses to the treatments mentioned in each story. What helps one person may not help, and may even hurt, another person. It is important that you understand that supplements, IVs, essential oils, and all other treatments, affect people differently depending on the millions of variables that make each of us unique. Please use appropriate caution and prudence, and get professional medical advice.

33 thoughts on “Melissa’s Story – Floxed Twice

  1. iulian October 22, 2018 at 8:18 am Reply

    hi. what did you do for the derealization ?…:( week 7 now and so acute . along with other simpthoms i have this is one is bringing me down. also.. how long you had that feeling for ? thank you

    • melissam October 22, 2018 at 8:45 am Reply

      I’m so sorry you are feeling that too. You have to ride it out. It started to improve about 5 months in. Really, hang in there and keep reminding yourself that it will pass!

    • Jenny November 8, 2018 at 2:20 pm Reply

      I’ve had depersonalization and derealization super strong now for 8 months straight. It will leave tho don’t worry. I have heard it from so many people I have spoken to . Just haven’t seen it yet . Don’t be afraid it’s a symptom your brain does to protect you from what happened . It’s neither deadly or painful it will just make you feel out of place . I pray it leaves for me too. Mellisa when was it fully gone in your case ?

      • melissam November 15, 2018 at 1:06 pm Reply

        Just saw this post Jenny! I know we’ve spoken since…I believe it will go for you too. Once I hit the 5 month mark I started to feel real feelings that were normal again. It’s hard Jenny! 8 months of it sounds terrible…I’ve heard others hitting that 12 month mark and see improvement in this area. I wish I could tell you for sure, but I am confident it will pass. I don’t see anywhere that the mind stuff is permanent.

  2. Melissa M. October 22, 2018 at 8:45 am Reply

    I’m so sorry you are feeling that too. You have to ride it out. It started to improve about 5 months in. Really, hang in there and keep reminding yourself that it will pass!

  3. Tom October 23, 2018 at 1:55 am Reply

    Hello, thank you for your story! It is great that you are doing much better! Wish you to have full health back. How many FQs did you take total? (pills/mg) What your vision issues? You mentioned floaters… Did they come “overnight” or was progressive worsening to some point? Had you blurry or double vision problems?

    • melissam October 23, 2018 at 4:45 am Reply

      Hello Tom! In July 2016, I took Cipro (500mg), and I took the entire dosage. I can’t remember if it was 7 or 10 days. I took one pill a day. I had no idea that it was the Cipro causing the reaction I had or I would have stopped sooner.

      In May 2018, I took Avelox (400mg), once a day. I only took two pills, one per day. I noticed a reaction after the first pill but I dismissed it and still took the second.

      The floaters came on with my first floxing in 2016 and only affected one eye. I have less floaters now than then, so it must be healing, and good that I didn’t get new ones this second time around. I don’t know if they came on overnight, but I don’t remember them progressively worsening. What was there was there, and one day I just noticed them. I did have a lot of dizzy feelings/blurry vision. Not double vision, but issues with being able to focus my eyes. When that would come on, I remember it would last about 2 weeks, then I’d be good for a bit, then it would come on for about 2 weeks again…I hated that feeling.

  4. Lorna October 23, 2018 at 7:30 am Reply

    Hi Melissa

    Wow what a trooper your story is truly amazing.

    15 days in (early days, haha)- but I really want to kick this thing in the was.

    Mainly suffering with fatigue, brain fog and really sore joints and nerve pain in leg stopping me walking.

    What iodine supplement did you take I wonder? And how much.

    Thank you !

    • melissam October 23, 2018 at 8:00 am Reply

      Thank you Lorna! We are all troopers…I see you are too. What you are experiencing I know very well. All of it should pass, I do believe that!
      I was told to be careful with iodine. I took a tiny drop a day for a couple of months, and then stopped because I was told it is good to take but bad to take too much. I got scared as I had no idea how much “too much” was. The brand is Natural Factors, and says on it “Fresh Kelp Extract – Each drop contains 800mcg of Iodine”. The bottle is a 50ml size. I was taking just a tiny drop, not the entire dropper full or you would overdose, but one single drop of the iodine in water, once a day. If you want a visual, here is what the bottle looks like: https://homegrownfoods.ca/products/nf-fresh-kelp-extract (I didn’t buy it from this website…I bought it from my local store).

    • Sandi November 13, 2018 at 10:09 am Reply

      Hi Lorna, I took Cipro on June 4th 2018. I am just 5 months out. My symptoms were CNS related, very high anxiety, crazy bouts of hopelessness & crying. Tendon, muscle & joint pain all over my body. Feelings of burning on my shoulders & elbows. Tight restrictive muscles on my legs. Tremors, fatigue and all over unwell. So many more symptoms I can’t recall or don’t want to remember. Right now I am walking pretty good. The tightness is gone but I feel very fragile. My hips & shoulders hurt everyday. Fatigue is better but still not my former energetic self. I am getting better but it’s hard when you want it to just be over already. I’m so tired of thinking about Cipro everyday. I am out doing my life and that is a godsend. I just recently went on a trip. I was so happy with myself that I was able to walk all through the airport and fly like my old self. I secretly rejoice in all my baby steps & accomplishments. We are around the same time floxed. How are you doing Lorna?

      • melissam November 14, 2018 at 8:26 am Reply

        Hey Sandi! I know you addressed your message to Lorna, but then you wrote that we were at about the same months out (5-6 months), which is making me think you meant to address your message to me :).
        Either way, it sounds like you have had many of the same symptoms as me, and I’m encouraged for you at the progress (baby steps) you have been making. I celebrate those baby steps too. I totally get that!
        Your energy will return, I’m sure of that. I also know what it’s like to want it to be over with already…I think we all are learning patience. From the sounds of it, you are almost out of the thick of it.

  5. jane October 23, 2018 at 12:08 pm Reply

    Hi Melissa.
    Just wondering if you still have neuropathy(tinglin, numbness, and nerve pain) and if you did anything for it ?

    • melissam October 23, 2018 at 12:45 pm Reply

      Hello Jane! I don’t have the nerve pain like I did, not even close. At the time that it was acute, I would scratch my head (or any part of my body) and the pain would last almost the entire day. Everything felt so hyper sensitive. My ears felt on fire, etc.
      Now, when I sit down cross-legged, I notice that familiar vibrating feeling in my legs. But that is getting better too. I still get tingly left hand from time to time (kind of carpal tunnel-ish, but only started after Quinolones). The nerve pain came and went in cycles, worsening at times and better other times, but never gone. Now I don’t really feel it or notice it there hardly at all.

      I didn’t do anything for it, unless the magnesium or vitamin B complex helped. It is very possible they did. I hope if you are having this symptom that it passes quickly for you.

      • jane October 23, 2018 at 1:02 pm Reply

        So basically time did away with it? Do you know how long you had it for? The neuropathy is driving me crazy 😦

      • melissam October 23, 2018 at 1:19 pm Reply

        I know, it was the symptom that was making me feel so anxious :(. I still hope and pray it won’t come back. This is my longest stretch without it!
        And yes, time did away with it. It lasted a couple of months. I started to notice my skin being extra sensitive when I touched it on my scalp. Putting a ponytail in would make my head hurt/burn or whatever that was, for a long while if not the whole day. Then I would feel it in all parts of my body. Even my BUTT burned! It was so weird. Are you still at the beginning of your journey? How long have you had this symptom?

        • Tom October 26, 2018 at 2:40 am

          My butt burned too…! I was sitting in the car and in the first moment I thought that the seat heating was turned on full power by mistake… then I realized that there is no seat heating in that car 🙂 (I have 2nd one with it) It lasted about half an hour and never came back… Very weird experience… It was about four months in. (now 8 in)

        • melissam October 26, 2018 at 4:58 am

          So strange these sensations. I’m so glad to hear it didn’t return! What do you have left after 8 months Tom?

  6. Rajiv October 25, 2018 at 2:58 pm Reply

    Hi. How long after the 1st floxing did your symptoms start improving and what percentage recovery were you at at the time of the 2nd floxing? Thanks.

    • melissam October 26, 2018 at 5:01 am Reply

      Hello Rajiv! The first floxing improved drastically at 4 months, from one day to the next. It was really odd that I went from horrible to pretty much nothing within a day. At the time of my second floxing, I would say I was 95% better. Now I’m nearly at 6 months from the second floxing and still I have symptoms (some peripheral neuropathy, and that vibrating skin sensation mainly on my legs that I know is my nerves, random joint and tendon pain that comes and goes, and dry eye that is already improving). It isn’t leaving quite as quickly this time around as the first time, though I’m doing so much better than I was a month ago and I can take off running if I want to ;).

  7. Lila October 26, 2018 at 10:45 am Reply

    Hi Melissa,

    I’m enduring post-floxing symptoms since 5months now. The main unbearable symptom is intense fatigue.

    How many time does your fatigue last and how did you cope with it ?

    Did you take something to lessen it ?

    Thanks by advance for your help.

    Lila

    • melissam October 26, 2018 at 11:18 am Reply

      Hello Lila. I know that intense fatigue very well. I don’t think anyone can understand just how debilitating that fatigue is…I remember I could barely move. That was a symptom of my first floxing experience in 2016 and went away after I went to the beach in Florida (around three days or so into our vacation). It was gone from one day to the next, like, GONE around 4 or 5 months into being floxed. I had read someone else say how each time she went to the beach, she experienced more healing. Must have to do with detoxing or replenishing trace minerals/magnesium. I didn’t do anything else. Coping with it was very difficult. It is very debilitating and I’m so sorry you are experiencing it. Rest when you need to but also make yourself move as much as possible.

      • Karen Ramey October 31, 2018 at 5:39 pm Reply

        I forgot to hit the “notify me” selection. Please keep me notified. Thanks, Karen

  8. Karen Ramey October 31, 2018 at 5:38 pm Reply

    Thank you for sharing your beautiful story of recovery. I’m inspired!

    • melissam November 2, 2018 at 6:33 am Reply

      I hope it does offer some hope! Thank you for taking the time to tell me that.

      • Jenny November 8, 2018 at 2:11 pm Reply

        Hi can you tell me how Ming the depersonalization lasted please. I am 8 months out and I still have it really bad 😦

        • Jenny November 8, 2018 at 2:14 pm

          Can you shoot me a buzz 310.432.3381 I need some guidance . If you want . I am a mom of two and floxing is ruining my life . Thank you .

  9. bobby November 14, 2018 at 12:00 pm Reply

    im about 5 months in was floxed by levaquin for a sinus infection that want responding to amoxiclav..anyway my joints still hury and my shoulders knees and tendons ..i have neurapathy and gor some reason all gets hurt when the humidity goes up…does anyone know why..sorry for everyone on here experiencing all these side effects …

    • melissam November 15, 2018 at 12:49 pm Reply

      It all is very upsetting, isn’t it. 5 months later, having shoulder/tendon/joint issues 5 months in is not uncommon. I have heard others talk about the humidity being an issue as well.

  10. Rajiv November 14, 2018 at 5:26 pm Reply

    Hey Melissa. How do you know if your regressing with new symptoms or is it just part of the process ? Im getting new symptoms and its freaking me out.

    • melissam November 15, 2018 at 12:40 pm Reply

      Rajiv, I would say it’s part of the process. Can you tell me, how long since you were floxed and your symptoms? Getting new symptoms is normal especially in the first 6 months but can be longer.

  11. Rajiv November 15, 2018 at 5:00 pm Reply

    Hi melissa. I had levaquin in february and cipro/macrobid in april. My symptoms of fatigue and minor tendon issues and peripheral neuropathy came on 6 weeks after macrobid or cipro. I had dark spots on my feet that went away 4 months in and then dizziness, weakness, tremors started in the 5th month. This is really rat poison that they gave us. I never knew an antibiotic could damage all systems of the body.

  12. Rajiv November 15, 2018 at 10:08 pm Reply

    Hey Melissa. Do you filter your drinking water and shower water at all?

    • melissam November 16, 2018 at 9:06 am Reply

      Hey Rajiv.
      I don’t know much about macrobid but I would assume it is all the cipro (that may be my lack of knowlege talking there). It is poison and I too didn’t know :(. I had the weakness and such start immediately, not at 5 months, but that doesn’t mean others haven’t had that show up a bit later. It affects us all differently.
      I don’t filter drinking water or shower. I have a Brita that I use off and on, and other times tap water. Where I live we don’t have fluoride in our water though, which is good.

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