Are you going to heal?

People often ask me if they are going to recover from fluoroquinolone toxicity. I struggle to answer them.

The most truthful and honest answer I can give is, “I don’t know.” I truly don’t. I don’t know how anyone else’s body is going to react to this poison. I don’t know if you’re going to get worse or better. I don’t know what your timeline will be. I don’t know if you’ll go through cycles. I don’t know if you’ve hit the worst of what is going to happen and your journey is all uphill from here, or if your pain and suffering have just begun.

Fluoroquinolone toxicity is so strange and individualized. There are some people who are permanently disabled by one pill, while there are others who tolerate multiple prescriptions of fluoroquinolones with no notable effect, but with their hundredth pill a “bomb” goes off in their body. Some reactions are sudden and easily noticeable, while other people have a gradual accumulation of damage and they slowly notice that they have insomnia, anxiety, GI distress, and that they cannot tolerate foods or chemicals like they used to – those people are floxed, but they often think that they’re “just getting old.” There are some people who have delayed reactions, there are some people who have immediate reactions. Reactions range in severity from mild to severe.

Different things help different people. Some people are helped by supplements, IVs, acupuncture, chiropractic, physical therapy, special diets, etc. But other people aren’t helped by those things, and some people are even hurt by them.

Everyone is different. I don’t know whether or not you will recover. I wish I did so I could give a better answer than, “I don’t know.” I can tell you that I have recovered. I recovered fully. I can work, hike, bike, travel, sleep, eat, and function as I did before I took ciprofloxacin. Probably because of my perspective as a person who has fully recovered, I tend to believe that many, maybe most, people can recover. People send me their recovery stories, and there are many more people who I see post things about their recovery on facebook. I see people move on with their lives. It’s hard to tell from facebook posts whether or not people are healed – you can’t see pain – but you can see that people are continuing to live life and that their pain and illness don’t consume every aspect of who they are. I see healing. I know that it can happen.

I also know that not everyone recovers. It needs to be acknowledged that some people are PERMANENTLY injured by Cipro, Levaquin, Avelox, Floxin, and the generic fluoroquinolones. Some of those people are permanently disabled because of muscle wasting and tendon tears, some of them struggle with chronic and permanent pain, some develop autoimmune diseases for which there is no cure, some never gain their energy back, some have insomnia that negatively affects every aspect of their life, some have serious psychiatric issues, some people have intractable GI issues and food intolerances, etc. The people who are severely floxed, who are not going to recover, deserve acknowledgement and respect for their struggles. Severely floxed people are some of the strongest people I know. During a conversation with friend of mine who was SEVERELY floxed (she was bedbound and paralyzed for months, and it hurt for her to blink) I noted that if she had been floxed at the level that I was (a moderate reaction) she would still be running, but if I was floxed at the level that she was, I’d be dead. She is so, so, so, so strong, and she has my undying respect and admiration.

When people ask me if they are going to be okay, if they are going to recover and heal, I think that they’re often looking for reassurance. On some level, they must know that I don’t actually know whether or not they’re going to heal (I’m just a fellow floxie who happens to write on the internet), but they want to hear someone who has been through it say, “You’re going to be okay. You will heal. It will get better.” I often say that to people. I believe it too. I think that it’s true for many, maybe most, people. Our bodies really do have amazing healing abilities. There are people who are floxed at all levels who see changes in their condition, and even healing. (My friend mentioned above has made remarkable progress. She may never recover to the point where she can run again, but she is no longer bed-bound.) Health ebbs and flows. Our bodies are constantly healing, and aging, and going through good times and bad. Most importantly, I think that hope is important, and that it’s healing. Reassuring people, and telling them that they’re going to be okay, gives them hope. Telling them that I have recovered gives them hope that they too will recover. Telling them that recovery is possible helps them to get through the hard times.

Hope is really, really, important.

Acknowledging that these drugs can do permanent damage, and giving respect to the permanently injured people who are living with the damage, is important too.

I try to walk the line between giving hope and acknowledging the pain that these drugs cause. I do my best, but I’m not always successful. I believe that it is the right thing to do to reassure people when they are scared, and to give them hope when possible. I also believe that it is the right thing to do to tell the truth (that I don’t know). Sometimes those things aren’t reconcilable.

Perhaps the best answer to the question of, “Will I be okay?” is, “I don’t know, but I can tell you that I fully recovered, so I know that it’s possible.” That’s the truth. And I hope that my recovery gives all who hear about it hope that they too will recover. Hope really is important and healing. It’s vital, and I hope that I can give you hope while still acknowledging that I don’t know what the future holds for myself or anyone else.

 

 

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18 thoughts on “Are you going to heal?

  1. Mark June 13, 2017 at 5:48 am Reply

    After over 3 years I’m still not recovered. My main problem are my tendons, and of course general weakness after having been so strong when I was healthy it’s also the hardest part for me.
    I didn’t reach the point of no return, yet.

    What baffles me the most though is the lack of action taken by the experts and doctors, especially the ones who prescribed FQ to us and ruined our lives. They need to be held accountable for their actions, because if they aren’t they’ll continue on their destructive path and increase the member count of sites like floxiehope.

    Thank you for your continuous effort Lisa, well appreciated by us floxies and not appreciated enough by healthcare professionals.

    PS: So…when does the FDA plan to take action against FQ? Maybe in 20 years when thousands of additional people got f’ed?

  2. Cindy Meredith June 13, 2017 at 6:13 am Reply

    Thank you Lisa. I’ve started to write my story many times but then decided I wasn’t ready. Its almost at 3 years and I m probably as recovered as I am going to get. I had some issues going on before I was floxed, fibromyalgia, osteoarthritis, tinnitus and vertigo. I managed those issues just fine and did mostly everything I wanted to do. I guess my experience with Cipro would be considered moderate to mild. I had burning and pain all over, severe (at times) muscle twitches, weakness in my leg muscles, and shaking at night while trying to sleep. my eyelids twitched, I did not sleep well and I was an emotional wreck basically. I took magnesium and received weekly Accupuncture for several months to try and get better. I really took things easy and tried to remain optimistic. I also stopped seeing my family doctor and long time friend who did not believe me about the Cipro. The symptoms lasted only about 4 months so I know I am very lucky.
    Today, I am about the same as I was prior to the Cipro poinsoning. My knees have gotten worse which I believe happened from the Cipro but other than that, I feel good all things cconsidered. I make it my business to tell everyone I can about this class of antibiotics. All of my current docs Know that I cannot have any drug in this class. I’ve discovered lots of people ( coworkers, neighbors, friends) who had reactions to Cipro or levaquan as well.
    Thank goodness I found your website when all of this happened to me. I really felt like I had a chance after reading so many stories. Thank you again. God bless.

  3. Melanie June 13, 2017 at 7:17 am Reply

    You’re right Lisa.
    There’s no way of telling. Its all so individual.
    I try my best to comfort people.
    I’ve seen total recovery only to relapse several years later. I’ve been bedridden…but then clawed my way out of that situation.
    I’m not symptom free but I’ve come leaps and bounds from where I was. For that I’m grateful. I can do most anything I want to do.
    I’m going to England tomorrow to see my dear mum who turns 80 on the 18th and see the rest of my family. Its been 6 yrs since I’ve been home. I never thought I’d see the outside of my bedroom so I’m extremely lucky.
    Somehow my body seems to be able to repair itself.
    I stay positive that one day I’ll be symptom free. Or at least very close.
    I don’t let it take over my life. Life needs to be lived.
    I know things are improvijng even if sometimes it feels like they are not.
    Last yr i i couldn’t drink alcohol. Now i can have a glass of wine. Or a margarita.
    I’m nowhere near as food sensitive.
    Yes i still tingle. I have tinnitus and the most annoying thing is the head pressure. But it’s gone from a 10 to a 1 or 2 in intensity.
    I just bought hearing aids but that wasn’t anything to do with floxing. I was losing my hearing before that.So I’m getting used to hearing litrally EVERYTHING .lol
    I laugh a lot. And that one thing we stop doing for awhile. That to me was huge…the first time I really laughed after floxing. It meant recovery.
    I had a run in with a flouroquinolone 2 weeks ago.
    My dog had emergency surgery. She was given meds to bring home. Me not thinking I sorted them out and put them in cheese. She spat them out. So I was pushing them into her mouth and they where melting onto my hands.
    A few hours later I got very light headed. Didn’t feel good at all.
    I checked her meds and one was a flouroquinolone. OMG!!!
    Panic set in and I have to say I did flare for a few days but i also realize i was panicked and that causes its own issues. I did throw them out. I’m back to my base line happily.
    Can’t get away from this stuff !!!
    I hope recovery comes to us all. I know it doesn’t but it’s my hope.
    I do think the mind can cause us to be frozen in the moment. Can stop us healing. So staying positive no matter what is key.
    Hard at times i know. But it works for me

  4. L June 13, 2017 at 7:29 am Reply

    You’re incredible Lisa. I think that’s about as close to perfect a response that you could give. You have an amazingly big, beautiful heart.

  5. Jason June 14, 2017 at 8:18 am Reply

    Lisa is indeed a very giving gracious hero in all this, helping to try and clean up the mess that Big Pharma and the FDA have created here.

    As an expert on health, and Floxing, I do want to address one aspect of this article:

    “Some of those people are permanently disabled because of muscle wasting and tendon tears, some of them struggle with chronic and permanent pain, some develop autoimmune diseases for which there is no cure, some never gain their energy back, some have insomnia that negatively affects every aspect of their life, some have serious psychiatric issues, some people have intractable GI issues and food intolerances, etc.”

    With the knowledge and experience I now have, I am very sure that many of these people can AVOID the above situations, if they were to act swiftly, doing the correct things needed for them, once they have been floxed. Some of these people would even be helped greatly long after, by again doing the right things, but after enough time has gone by without doing them (or worse, doing the wrong things) there also might be some injuries that are then irreversible, though I am not convinced of this given how how brilliantly the body was designed, and how miraculous it can recover, when given the right tools.

    Note also that Autoimmune conditions ARE curable, just don’t go to a Western Medicine Doctor, of course.

    It is VERY unfortunate, that there are virtually no experts out there on Floxing who really understand the many facets of it, and the body, to be able to help people, and there are sooooooo many pitfalls that a very vulnerable Floxie can fall into. Thankfully they do at least have Lisa and FH to assist them in their research, and to give them hope. 🙂 Good job Lisa!

  6. Lukasz June 16, 2017 at 8:39 pm Reply

    I want to take a moment to echo the previous posts and say THANKS for your honesty, Lisa. You could easily tell us what we want to hear but that’s not the reality of the situation.

    Having that hope though, is crucial. I think most of us are clinging on to your and others’ full recovery so that we, ourselves, can one day get there and get back to normal living.

    Let’s hope we all get there at some point.

  7. Janet June 23, 2017 at 6:06 am Reply

    Hi Dear friends, I am here to tell you about my problem , I was ill last April 2016, I got better then I had 2 relaxes, the last one was very bad with horrible pains , mental fog, etc , but no neuropathy burning , all this time I was taking everything that we have try, but even like I still have bad again, I loss my hope because I was in the most pain than before plus mental fog , ear pain, vertigo, I thought it was my end, so watching videos in YouTube, I saw a nutricionist talking about the benefits of bone broth and free sugar gelatin, so I got free sugar gelatin and I start drinking one tea spoon in a glas of water 5 times a day in empty stomach , I start getting better the sequent day , after 2 weeks all my symptoms disappear, I am better than before, and I am not drinking the others vitamins any more, just the magnesium every other day, but I still drinking the gelatin 3 times a day . I just mencione this to you, it may help you, good luck everybody, sorry for my grammar 😀🌹

    • Janet June 23, 2017 at 6:13 am Reply

      I forgot to tell you the benefits of the bone broth and free sugar gelatin are make your muscle , bones and tendons strong , detox the body , and help reduce the inflammation, I got from amazon and also between these 2 products these nutricionist say the bone broth is better but I check the price, it is expensive that is why I choose gelatin $20 for 2 , good luck👍🏼

    • Janet June 23, 2017 at 6:21 am Reply

      I fort got to tell you the best way to drink the gelatin or bone broth is: put one big tea spoon in a glass of water 2 hours before you drink, also my stomach got better, good luck

    • L June 23, 2017 at 9:53 am Reply

      Good post! I just looked it up and it appears to benefit so many areas—connective tissue, the gut, cells….and also helps glutathione production, so sounds like an excellent suggestion (especially since bone broth takes FOREVER to make. Here is a good link regarding collagen https://draxe.com/gelatin/

    • Janet June 23, 2017 at 11:29 am Reply

      One more tip, if you drink these , please drink plenty water , because drink gelatine or bone broth is like eatting a lot of meet and it can cause kidney stone, so please be smart when you take gelatin or bone broth, drink plenty water or a tea that can clean the kidney, good luck 👍🏼

  8. L June 23, 2017 at 9:54 am Reply

    Also, like bone broth, you want to make sure the source is good and not containing any antibiotics, etc

    • Janet June 23, 2017 at 12:08 pm Reply

      Yes, that is a great sugestión L on, what we can do is take a week of gelatine or bone broth then stop one week …or reduced the amount , so we don’t get kin stones, I am like cute right after taking for 2 weeks , the first week I took 5 times a day, following week I took 3 times a day , today just in the morning, then I will reduce one every other day, and I am drinking parley tea to revent kidney stone, also it make you constipated 😀, but is good to try

      • L June 23, 2017 at 12:11 pm Reply

        I also use Vital Proteins collagen peptides in my smoothies, which I think may have some of the same properties

        • Janet June 26, 2017 at 6:16 am

          Thank you L on, I found a bone broth collagen and bone broth protein , I am wandering which one is better for us, I just want to say something important , my neighbor was floxed 3 years ago she was full recover all ready one year with suplements and ozone blood therapy, BUT , a week ago she decided to do apple cider vinager kidney cleanse and took 2 spoons in a glass of water twice one day and now she is having a very bad relapse with mental fog, so becareful with these maybe our body is not strong yet , good luck with your recovery 🌹

        • L June 26, 2017 at 9:35 am

          I am wondering if something else caused the relapse. ACV is very healthful for many things. (Although I would do just a teaspoon in a glass of water once a day.)

        • Janet June 27, 2017 at 4:45 am

          She says after she took ACV the sequent time her body started to get bad again, the same day, I was reading about ACV it says if we drink to much it can take the calcium from the body … just be careful, she still have her relapse, good luck everybody🌹👍🏼

    • Janet June 27, 2017 at 9:55 am Reply

      Hi again , I tryed bone broth protein this mood and it make have mental fog, so I desire no to take bone broth, if you try as L on says make sure it doesn’t have hormones and it is organic, for now I will just stick with the gelatin , it is more safe for me and it is not expensive $20 for 2, good luck in your recovery 👍🏼🌹

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