Floxie Hope

Floxie.Hope.1800.72.dpi

This site is to give HOPE to those who are suffering from Fluoroquinolone Toxicity Syndrome as a result of being poisoned by fluoroquinolone antibiotics – Cipro, Levaquin, Avelox, Floxin, etc.  It contains stories of healing.

Cipro, Levaquin, Avelox and all other fluoroquinolones are dangerous drugs that can have devastating effects that cumulatively I’ll refer to as Fluoroquinolone Toxicity Syndrome or Floxing.  Fluoroquinolone Toxicity Syndrome/Floxing includes damage to connective tissue (tendons, ligaments, cartilage, fascia, etc.) throughout the body, damage to the nervous systems (central, peripheral and autonomic), and more. The damage done by fluoroquinolone antibiotics can destroy a person’s quality of life or even kill them. Certainly, there is a time and a place for drugs with dangerous side effects. If you find yourself in a septic shock induced coma, fluoroquinolones may save your life. Unfortunately, these drugs are not being reserved for life or death situations. People are being prescribed them for urinary tract infections, suspected prostate infections, upper respiratory infections, as a prophylactic for travelers’ diarrhea, ear infections, pink eye, etc. Thousands of people have suffered needlessly from the devastating effects of fluoroquinolone antibiotics, when another, safer antibiotic could have, and should have, been used.

The damage done by fluoroquinolones is largely unacknowledged by the medical establishment and an accurate diagnosis, compensation and relief are difficult to come by. There is no known cure for Fluoroquinolone Toxicity Syndrome/Floxing.  However, many people continue to LIVE after being poisoned by fluroquinolones.  They find healing, recovery, perseverance, compassion and hope.  These are their stories.

This site is meant to give hope for healing to those who are adversely effected by fluoroquinolones.  It is no way meant to disregard the pain of those who are chronically suffering from the horrifying effects of Cipro, Levaquin, Avelox or the other fluoroquinolones.  There are people who don’t recover.  Their stories are real and they matter.  There are also people who are able to recover and I share their stories with the hope that they inspire others, or at least give hope that recovery is possible.

Here is a New York Times article about the dangers of fluoroquinolone antibiotics – http://well.blogs.nytimes.com/2012/09/10/popular-antibiotics-may-carry-serious-side-effects/?_r=0 – more news stories, research papers and other resources can be found on the “Links and Resources” page.

Here is a Facebook group that is a great resource for those going through Fluoroquinolone Toxicity – https://www.facebook.com/groups/floxies/

Featured post – I’m floxed. Now what?

The Fluoroquinolone Toxicity Solution Ebook has helped many Floxies to recover, including DanielCindy and Ruth.  As a bonus, you will also receive The Floxie Food Guide – a book of diet guidelines to help you through fluoroquinolone toxicity:

flu tox get help you need banner click lisa

 

 

 

25,621 thoughts on “Floxie Hope

  1. Dee May 28, 2020 at 7:15 am Reply

    Attila, I have had acid reflux for years and been on Nexium for many years too. I got floxed 3 years ago and weaned myself off of the Nexium as no PPI I meant for long term use. As a matter of fact many times acid reflux can be caused by too little acid production. You have to get a test done to find out if you have too little or too much acid. Anyway, when I got floxed I decided to go off medications I was on that I felt were unnecessary other then my thyroid meds. Keep in mind that I was diagnosed with Barrett’s esophagus which is a change in cells in the esophagus due to acid damage. I lost 50 lbs after being floxed and my acid reflux mostly went away. At 2 1/2 years out I put all my weight back on and my acid reflux is really ramped up bad now. I probably have 2 options which is to lose this weight fast and hope the acid reflux settles down or go back on Nexium for at least 2-3 months to try and heal acid damage in my esophagus. I don’t want to go on the med but it might be imperative for me being that I have Barrett’s. If this is your first time having acid reflux you may try natural approaches to healing first. Avoid spicy food, peppermint, chocolate, high citrus fruits, caffeine (you can google it). Do not eat 3-4 hours before bed. Try to raise your bed some at your head end. (You can buy a wedge to sleep on). There are a few things you can do and you can find lots of info online. I don’t know how long you have had acid reflux or how bad it is so always get your Docs opinion and do your homework too. PPIs are actually suppose to be for short term only ( about 8 weeks) but many end up on them long term. They are also extremely hard to wean off once you have been on them for awhile. I have had 4 endoscopes done so I am well aware of the damage done to my esophagus. I am 64 and should have started 20 years ago taking more steps to address my acid reflux naturally instead of being on meds all that time. Weight control and especially your “diet” are the key ingredients to get it under control.

    • Don M May 28, 2020 at 8:00 am Reply

      Dee…………. I support all your comments. The medical establishment and the doctors appear now to be trained to treat what they see as quickly as possible and damn any after effects. Why? Because they do not have to live with the after effects. If they can quickly “mask” the problem with a drug they appear to be satisfied.
      What do most doctors do? They tell you to stop the drug and give you a different one opening you up to different side/after effects.
      Yes … I have become very anti “today’s traditional” medical establishment.
      For nearly all lab concocted drugs there is a natural one out there. The problem is finding that drug because so little is done about promoting them. Big Pharma has a vested interest in suppressing as much information as possible about natural alternatives. You have to find it and sort it out yourself because your doctor is following the information the drug companies are putting out.

      I was interviewing (his office called it “intake”) a prospective doctor and he told me “I have never heard of Fluoroquinolone Toxicity”. “Antibiotics target only bacteria and do not affect the other cells of the body”. I ASAP left his office and have never been back.

      • Dee May 28, 2020 at 8:35 am Reply

        Don and Attila
        Yes I know from experience that PPIs long term can give you a sense of false security in having acid reflux. It shuts down you acid making ability which is so important in digesting your food properly. You take a PPI and just go on living your life eating what you want. You don’t address the cause of the acid reflux and it never goes away or heals. If you can address it early with weight control, diet changes and lifestyle changes you can usually heal it naturally. The sooner you can do this the better rather then being dependent on a medication with long term side effects and also getting control of it so you don’t get damage to your esophagus which can lead to cancer over time. I am several years too late as I listened to my Doc about staying on a PPI and now I have Barrett’s esophagus which I am trying to not let it go any further then that!! It is a much harder challenge now that I’m a lot older and overweight. If you are young and getting acid reflux strike it down as soon as possible with natural intervention!

      • Bob May 28, 2020 at 1:29 pm Reply

        I hope you told this doctor he is hopelessly uninformed and too lazy to keep up with research and should probably give up his medical license. I call that a quack.

    • Kirst August 5, 2020 at 11:55 am Reply

      Hi Dee, I have come across a book that may help with acid reflux. Its called Celery Juice by Anthony William. It is packed with original info and has helped me

  2. Dee May 28, 2020 at 11:44 am Reply

    I didn’t want to contribute to the arguing but I am just going to say that I agree with Barbara as far as please please stop with all the bantering back and forth about the Covid virus. We all have access to the media and the internet to gain knowledge and information from whom we choose and we can form our own opinion, beliefs and protocol to protect ourselves with that knowledge. I am older and I choose to protect myself but I know that many others don’t take it as seriously. I can only control myself and what I do, not others. Let’s keep this a positive sight for healing and recovering from FQ poisoning. That is enough for most of us to deal with. Some people who come to this site are very sick from FQ toxicity. Let’s all be there for them in a positive healing way of support. Arguing back and forth about Covid is not what this site is here for so let’s be done with that. We all have enough stress and anxiety to deal with our FQ symptoms along with worrying about Covid too. Let’s be here for each other to facilitate healing from FQ symptoms. That is first and foremost for all of us. This site has helped so many of us in recovering from this FQ nightmare. Let’s keep it that way! No more arguing please!!!!

    • Barbara Arnold May 28, 2020 at 10:32 pm Reply

      Well said Dee. I couldn’t agree more. Thankyou, I know what it took for you to say this.

      I didn’t know you had Barrett’s esophagus, I’m really sorry about that. As if you don’t have enough to deal with. I did get acid reflux for a short while but it went away like many of floxy symptoms do. I do tend to get a lot of ‘heartburn’ now even if I havn’t eaten anything that I think would cause it ie salad, baked potatoe etc. I take an over the counter ant acid as sometimes it can really burn, but it seems short lasting. Like you I find this sort of thing more of a challenge getting older. What are you doing to try and stop the Barrett’s esophagus from going any further ??

  3. Dee May 28, 2020 at 1:41 pm Reply

    Bob, at this point in time I told talk I refuse to take PPIs and will avoid them unless my Barrett’s becomes a major problem. I may have no choice but need another scope to see how much damage has been done

  4. Madge Hirsch May 28, 2020 at 5:15 pm Reply

    I’m very keen to eat out next week when restaurants reopen here! Cooking every day for nearly three months has made me long to be able to sit down , choose from a menu and walk away from the washing up. Eventually managed to do the tax return with no tears. The real problem is the UK sticking to the stupid idea of a tax year that runs from April to April and not January to January. My husband keeps telling me to stop trying to understand it just fill in the boxes on the spread sheet. The paracetamol with opium painkillers work really well but like you I don’t want to build up a tolerance to them. So I am saving them for trips out on the bike. Getting on the bike is painful for the hip but once on I’m ok. Today we went for a picnic at a lake. I think the confinement has been emotionally wearing for a lot of people and it will be good to get out other than just for food shopping or the chemist. Take care .

    • Madge Hirsch May 28, 2020 at 5:17 pm Reply

      This reply was meant for Barbara but seems to have ended up in the wrong place!

    • Sheila May 28, 2020 at 5:33 pm Reply

      I agree, working in accounting it boggles the mind sometimes that the calendar starts in January but the fiscal calendars can start anywhere anytime, it would be great to have them all start at the beginning of the year.
      sounds like you had a lovely day, I am anxious to eat out too, but still going to hold back as my state has yet to hit any sort of peak and with everyone out n about without masks at all I think I’ll wait to see how that goes. But a good salad sounds great to me, I can’t wait but it looks like at least another month for me.

    • Barbara Arnold May 29, 2020 at 1:03 am Reply

      Madge,
      Ha ha, I know what you mean about eating out and not washing up. I am really fed up with cooking, but I have stretched myself and cooked some things I normally wouldn’t do.
      We have just booked a restaurant in Alicante for the 7th June. I am really looking forward to it and can’t wait. We used to eat out several times a week, so it’s been hard . However I never forget how lucky we are as we have a big garden with a pool, so at least we could get outside for fresh air. God knows how those people living in small flats have managed.
      The worst thing for me was not seeing my grandson, even though we zoom each other, I have a craving to give him a cuddle. If the UK drops their quarantine rules as Spain has done, there will be a light at the end of the tunnel, so I’m hoping that will happen in the not to distant future.
      Enjoy your meal out Madge, and take care xx

  5. Dee May 28, 2020 at 11:34 pm Reply

    Barbara, at this point in time when my acid reflux acts up I take an antacid to try and calm things down. I don’t want to go back on a PPI. My goal is to try and lose weight as I think the extra weight gain has really ramped up my acid reflux along with having a hiatal hernia. Even though being floxed was an absolute horrible nightmare I did lose 50 lbs the first 3-4 months which was actually a big part of my acid reflux going away for about two years. As I recovered I slowly gained all my weight back and my acid reflux came roaring back. I’m sure being floxed might have contributed to it coming back too. I will be 3 years out from floxing in one month. I actually consider myself about 90% recovered with the exception of this acid reflux and some symptoms that come and go but doesn’t really hinder my life much. I want to get another endoscope to see if my esophagus has been more damaged these past 3-4 months but am waiting for this Covid virus to decline more before having a scope. If I have further damage I might have to go back on a PPI to help my throat heal. Meanwhile I’m trying to watch my diet, eat smaller meals and stay upright until very late night until I lay down to sleep. It is a challenge everyday but I do my best. My floxing recovery was hell on earth. I had 20 plus symptoms and my recovery was long and slow. I’m just starting to feel like I’m getting my life back. The mental and emotional trauma is the hardest thing to come back from but I’m slowly finding myself again and trying to look forward instead of back. You have always shown kindness and support when I have come to this site with questions and concerns. You always encouraged me with positive and kind words. This floxing recovery is a long journey and it is a “process” to heal. I’m getting there. I try to help others when I can but I want to move past this too. I am praying that I can get my weight down and heal my esophagus along with getting stronger and more energy back day by day. I want to find joy and optimism back and no longer live in Floxie fear. It is a tough road to walk. Thank you for your support along the way.

  6. Barbara Arnold May 29, 2020 at 12:50 am Reply

    Dee,
    I don’t know if this will help, but I’ve just seen a post from a fluroquinolone site, where the poster, who is also a moderator said she took Betain HCL. The theory being that the reflux resulted not from an excess of acid production, but a general paucity. Blood cells in the respiratory tract could stack in what supposedly called the ‘Rouleaux formation’ This results from an absence of certain compounds necessary for digesting protiens. She said that taking Betaine HLC , a cheap probioctic complex, and some standard digestive enzymes, in less than a week this cleared up the problem. She also said it worked for people with ‘air hunger’ as well. It seemed to make sense to me, so I thought you might like to look into it. I really hope it helps.
    I also think losing weight could help, but like you I find this extremely difficult as I’ve got older, it sucks, but I’m really happy to hear just how far you have come. To be 90% recovered after 3 years, tells me you are doing well, and with your positive attitude you will get there. Never foreget how far you’ve come in one of the hardest journey’s of your life. Your stronger than you think.
    I wish you all the joy and optimism in the road ahead.
    Love Barbara xx

    • Dee May 29, 2020 at 6:52 am Reply

      Barbara, thanks for the suggestion on the Betaine HCL. I’ve thought about trying it in the past as I know it is possible that I have too little acid rather then too much. This actually is pretty common. I’ve never been tested so I don’t know the answer for sure in my case? BUT I think I will give it a try to see if it is a game changer! I’ve really got nothing to lose. I will know fairly soon after trying it if it works or not for me? Thanks for reminding me about it! I will update you when I give it a try!!! Take care and enjoy going out to eat in a week!! I miss hugging my grandson too! Time to start getting out again in a safe way before we all go crazy!!! Big hugs! D

      • Barbara Arnold May 30, 2020 at 5:53 am Reply

        Dee, just remembered I heard Apple Cider Vinegar can also help. You can mix it with juice apparently. Something else you could look into. Hope it helps.

  7. Lisa May 29, 2020 at 3:59 pm Reply

    Hi All,

    I can’t stop people from commenting on a particular topic or thread (as one can on Facebook), so I just deleted a couple threads that had become contentious on issues other than fluoroquinolone toxicity. I deleted entire threads so as not to single out any particular person. I have an awful tendency to always want the last word, and I don’t think I’m alone in that unproductive tendency, so I just deleted the threads, and I hope that those who were involved in the conversation can agree to disagree.

    Fluoroquinolones don’t care what a person believes, and people from every background and with beliefs all over the spectrum of possible beliefs, have been floxed. In a crazy way, it has brought people together who would not otherwise associate with each other, and that is a round-about blessing. I appreciate all the people that have come into my life because of this site and the “floxie” community. In no way do I appreciate the drugs or the damage they have done – but I do appreciate the people, even the ones that I disagree with and wouldn’t have associated with under other circumstances. This site has been a place where people can find things that they have in common, and they can help people through the horror of fluoroquinolone toxicity. Finding things in common and helping others is at the base of our humanity, and I appreciate seeing the humanity in everyone on here that has helped others through this difficult disease. You are all appreciated. Even those of you who are pissed at me for deleting long posts that took you a while to write. 😉

    We are living in contentious times, and our differences seem to be highlighted more often than the things we have in common. But we really do have more in common than we don’t – and that’s something we should all keep in-mind.

    I ask that until the world feels a bit less topsy-turvy, can you (collectively) please try to stick to topics that are fluoroquinolone toxicity and healing related? I know that COVID, and politics, and other contentious topics are on everyone’s mind, but if you can please stick to FQ related topics for the most part, your help will be appreciated. Thank you.

    Hugs,
    Lisa

    • Andrea May 29, 2020 at 4:13 pm Reply

      Got it 🙂

    • Virginia May 29, 2020 at 5:22 pm Reply

      Hi Dee, I might recommend some caution with Betaine hCl. An integrative doctor recommended it for me, and it, maybe combined with other meds/supplements, made my stomach hurt for a whole year. The doctor had told me to lower my dose when I felt a warmth and tingling in my stomach, but I never felt those sensations, so didn’t realize I might be damaging my stomach. For those of us with too much acid, B. might be unsafe. I think I’ve brought that up on this site before, but not sure if you’d seen it.

    • Virginia May 29, 2020 at 5:26 pm Reply

      Thanks for stepping in, Lisa, and for your tactful, peace-making explanation.

    • Barbara Arnold May 29, 2020 at 9:58 pm Reply

      Thankyou Lisa,
      I one hundred per cent agree with what you have said. Thanyou for this wonderful site that has helped so many, may it continue to do so. xx

  8. Orf May 30, 2020 at 1:01 pm Reply

    Thank you Lisa, thanks for this great site that gives people hope.

  9. Hans May 31, 2020 at 5:25 am Reply

    Thank you Lisa for putting together very useful pieces of information.

    here is also a nice resource for recovery:
    https://bit.ly/3gGj6aP

  10. joanneg May 31, 2020 at 10:26 am Reply

    Andrea, I take Healus which is tributyrate acid along with potato starch and a probiotic so basically the same thing your doctor ordered you and it works amazing for my stomach, gut inflammation and energy. Just wanted you to know in case you haven’t tried it yet.

    • Andrea May 31, 2020 at 2:08 pm Reply

      All right, thanks

  11. Lisa May 31, 2020 at 2:30 pm Reply

    I wanted to let you all know that I received an email back from Henk’s account – one of his loved ones wrote me back through Henk’s email. Sadly, Henk is not doing well. He is very weak and his prognosis is poor. I (Lisa) ask you to keep him in your thoughts, and if you are inclined, keep him in your prayers. He sends his regards to the community.

    I will send him any notes that you want to post here, or you can send them directly to me through the contact link above and I will forward them to him.

    Hugs,
    Lisa

    • Andrea May 31, 2020 at 4:22 pm Reply

      Thank you so much Lisa. Please tell Henk’s family or friends, to keep us updated on his situation, whatever happens. Tell them his floxie family loves him. I know it’s a big request, but try to understand. Thank you so much. Here’s my message to Henk :

      “Dear Henk, It’s Andrea, after a few days of concern because of your absence from Floxie Hope, Lisa informed us about your health status. Needless to say I’m deeply sorry for what’s happening to you. Many of us, me included, during theese days were asking about you. Not one minute I stopped thinking about you, hoping that you were doing better, sadly this wasn’t the case. I just want to let you know that, whatever happens, I consider you a friend. Since we’ve “met” on this website, you’ve always been very nice and friendly, to me and to everyone, and I will never forget all the knowledge and useful informations you’ve shared here. Not only that : all the comments, all the things you’ve shared here, all the worlds that you wrote, I will always keep them with me, in a special place in my mind and in my heart. Even though sometimes I’ve been quite rude with you, I know you’re a great, good guy, and you’ve never felt any anger towards me. You’ve already told me that, and I will always respect you and thank you for that. I wish I could help you, someway, somehow, but I can’t.
      What I can do, is telling you that, no matter what happens to you, you will always be in my thoughts. Like I said, you’re friend to me now. Not only that : you, me and everybody in this community, we share an unfortunate path, so I guess there’s a connection between us.
      I wish you could write me back, like you used to. There’re so many things I’d like to chat with you about, but this is a weird situation. I wish I could find better words, but I can’t.
      I miss you Henk, you’re a good guy.

      • Lisa May 31, 2020 at 4:33 pm Reply

        Thank you, Andrea! ❤ I sent your comment to Henk. ❤ ❤

        • Andrea May 31, 2020 at 5:26 pm

          Thank you Lisa

        • Barbara Arnold May 31, 2020 at 10:04 pm

          Dear Henk,
          You have been an amazing contributer to Floxie Hope, and you are very muched missed. We all thank you, and we think about you . I wish you strength and courage and love.
          Barbara Arnold x💜

        • Lisa June 1, 2020 at 5:30 pm

          Barbara, I forwarded your note to him. xoxo

    • Virginia June 1, 2020 at 5:32 pm Reply

      Lisa, would you please forward this to Henk:
      Dear Henk, you have been a constant source of support to so many on Floxie Hope over the years, and I hope you are feeling our support for you in this very hard time. I pray for your health, and strength and serenity to get through this.

      • Lisa June 1, 2020 at 7:13 pm Reply

        Thank you, Virginia! I sent it to him. xo

    • Rop June 3, 2020 at 3:23 am Reply

      Hello Lisa and all other friends of Henk,

      My name is Rop, I am a friend of Henk. Since Henk is no longer able to read his email, I am contacting you through this site to update you on Henk’s status.

      As you probably already know, Henk is very ill. He was diagnosed with esophagus cancer several weeks ago. The cancer has spread to his liver and lymphs. His prospects are not good.

      Henk has chosen not to undergo chemotherapy, but he has received radiation treatment to reduce the blocked esophagus. Sadly this had only limited effect and he remains dependent on a feeding tube.

      Henk’s time is limited. He would like to thank you Lisa, Andrea, Barbara, Virginia and all others from this site for your friendship and kind words. I will try to keep you updated by posting here.

      Regards,
      Rop

      • Andrea June 3, 2020 at 10:32 am Reply

        Hi Rop and thank you for supporting your friend in this hard time and keep us updated on his situation. We all love Henk, he’s one of us. Thank you again. Say hello to him from all of us

      • Madge Hirsch June 4, 2020 at 2:36 am Reply

        Hi Rop- thank you for updating us on Henk. He is very much in our thoughts . Please pass on our good wishes and let him know how much we miss him here.

      • Virginia June 4, 2020 at 4:00 pm Reply

        Rop, thank you so much for updating us about Henk; we are all worried about him. Your news is very sad, but not unexpected. Please give him our greetings, prayers and good wishes and please continue to keep us updated.

      • Andrea S. June 4, 2020 at 6:43 pm Reply

        Hello Rop. Thank you so much for the update on Henk. I have had him on my mind often and your news is of course not what we all wanted to hear. I hope and pray Henk is not in pain or suffering. Please if you read this tell him Andrea S. from the USA is thinking of him and forever grateful for the kindness he showed to me on this platform.

  12. Orf May 31, 2020 at 10:16 pm Reply

    Is Magnesium Cloride ok to take for qinn antibiotic poison? Any info appreciated.

    Thank you

    Orf

    • Andrea June 1, 2020 at 6:11 am Reply

      Any form of Magnesium (cloride, malate, citrate etc) should be good after a FQ course, since it’s shown that FQs depletes magnesium from your body. But keep in mind that we’re all different. For me, personally, magnesium has always been kinda tricky. At the beginning of my journey, son 3.5 years ago, magnesium seemed to do more harm than good. It took a while to see some positive effects. I now use, only sparingly, some magnesium malate (said to be the best for muscle spasms and weekness) and from time to time a liquid multimineral called Remyte mineral solution. It is said that the best form of magnesium for your brain, is magnesium threonate
      Anyway, to answer your question, I belive magnesium chloride is fantastic to use in baths (epsom salt), but I don’t think it’s a good choice to use internally. I would choose other forms.

  13. Dee June 1, 2020 at 2:41 pm Reply

    Lisa. Please send this note to Henk.
    Henk, you have always been there for all of us Floxie’s giving us valuable guidance, information and feedback. You have helped us all in our recovery and healing more then you know. Thank you for caring. Please know how much we appreciate your concern and support. I pray that you are finding strength and perseverance to get you through this very trying time. I pray that you also can find a sense of peace through this too. Thank you for being there always for so many of us. You have touched many of us. May you be surrounded in love and light always. Prayers and thoughts are being sent your way. Blessings.

    • Lisa June 1, 2020 at 5:31 pm Reply

      Thank you, Dee! I forwarded it to him. xo

  14. Orf June 2, 2020 at 12:42 pm Reply

    Thanks for the Mag. information everyone!

    Orf

  15. sinisteressex June 3, 2020 at 9:03 am Reply

    Lisa, please tell Henk that despite not knowing him, his participation in clarifying the floxies problems was essential to my recovery path. I am from Brazil and since I discovered this community with so much information I have been sharing it with my friends and colleagues. Tell Henk that working on it was indispensable for many people, including people from other countries, like me, a resident of Brazil. I wish him recovery soon! Strong hug from someone very grateful.

  16. Andrea June 4, 2020 at 2:23 pm Reply

    Hey L, where are you?

    • A.Coleman June 8, 2020 at 2:28 pm Reply

      Andrea, I was just wondering the same thing. With Henk not posting anymore and L having gone silent too; the “core” of Floxie Hope took a big hit. I hope L is well and just recuperating from quarrentine and away from her computer.

      • Andrea June 8, 2020 at 5:55 pm Reply

        Yes, I’m a little worried too…how are you anyway? Any update on symptoms etc?

  17. Don M June 10, 2020 at 8:11 am Reply

    I am going to recommend that you look into something. It is called Aculief. Watch the video and then go to my next post to see their web site.

    Don’t laugh. It is based on the old Chinese acupressure idea. Very simple device but works on the L 14 acupressure spot.

  18. Rop van Rijen June 10, 2020 at 12:05 pm Reply

    Dear friends of Henk,

    I am afraid have sad news for you. Henk passed away today. Henk chose the moment of his departure, because he was very ill and tired without any hope for the future. He was in the company of his friends and we guided him out of this life. He had a strong belief that his friends and family that left before him were waiting on the other side.
    Thank you for being Henk’s friend
    Regards,
    Rop

    • Virginia June 10, 2020 at 6:00 pm Reply

      Rop, I am so sorry to hear about Henk’s death. It is shocking how quickly his cancer took him. I know many others on this site will be grieving too. He was a caring soul, generous with his advice and time, and never left anyone unanswered. I’m very glad he could choose his time of passing, so that he had some control about his death. I too believe that he is now with his friends and family who were already on the other side. Thank you for letting us know the sad news and for being with him at the end.

    • Andrea S. June 10, 2020 at 6:58 pm Reply

      Rop thank you so much for letting us know here. My heart is heavy. How wonderful that he was surrounded by his friends to help guide him to his next journey. Henk helped calm me when I first came to this forum. I will never forget that. I hope it gives you and Henk’s friends comfort knowing he is now at peace and has joined his loved ones. May God bless you and everyone Henk touched. I am so very sorry for the loss of your friend.

    • Andrea June 10, 2020 at 7:56 pm Reply

      Rop,
      thank you very much to let us know this sad news. I’m very sad to read that. It happened so fast, but at least I’m glad he had the opportunity to choose when to leave this life and that he was surranded by his friends. Me and him had shared so much on this website…good and sometimes bad feelings, but in the end, we had the opportunity to make peace and I will always be thankful for that. Chatting with him, through the years, I’ve learned that he was a gentleman and a caring person. I’ve learned a lot form him. I’m sorry for your loss.

      Bye Henk, you will be missed,

      Andrea.

    • Barbara Arnold June 10, 2020 at 10:28 pm Reply

      Rop,
      This is so sad, but I am glad Henk is not suffering anymore. He is at peace now.

      He was one of the main contributor’s on this sight and he will be missed by us all, it just won’t be the same without him.
      Thankyou for letting us know and my condolences to you and his friends.
      Hugs,
      Barbara.

      • Andrea June 11, 2020 at 8:09 am Reply

        Barbara, that’s just what I was thinking. This site helped me so much in the last 3 plus years. Without him, this is ain’t going to be the same. And now I’m starting to get worried for L. She was one of the most active person here, and now she’s not showign up anymore. I hope everything is fine with her…

        • Barbara Arnold June 11, 2020 at 10:49 pm

          Andrea,
          I believe when she is ready, L will return. She likes to take a rest now and then as it helps her health. We can always ask Lisa to email her in the future if we get worried.
          You stay well to, and keep letting us know how your doing.
          Hugs,
          Barbara

        • Andrea June 12, 2020 at 1:50 pm

          Thank you Barbara, you too

    • Madge Hirsch June 11, 2020 at 8:09 am Reply

      Thank you Rop for letting us know of Henk’s death which sadly we were expecting. Henk was a very prolofic contributor to this community and helped lots of us going through this journey. He was very much appreciated and will be sorely missed. It is good to know he could choose when to go. It is a consolation that his suffering is at an end.

    • Lisa June 11, 2020 at 11:49 am Reply

      Thank you for letting us know, Rop. We are all saddened by the loss of Henk. He was loved and appreciated. I am glad that he was surrounded by love as he passed.

      It is an honor to have known him and to have been his friend.

      Hugs and love to all his friends, family, and other loved-ones.

    • Michael June 11, 2020 at 1:41 pm Reply

      That’s sad news. Rest In Peace Henk.

    • A.Coleman June 12, 2020 at 1:34 pm Reply

      Henk will be missed by all of those on Floxie Hope. He never gave up hope and I am sure he is at peace now. He was a great contributor to this site and was always willing to provide his help and find information for topics where he might not already have experience.

      Thank you Rop for being there for him since we could not.

    • selcem June 18, 2020 at 4:43 am Reply

      So sorry for Henk, he was supporting us while we could not receive support from anyone around. He was very kind man.
      Hope is the most important, and I wish none of us loses hope. Folks, please stay strong, and dont let flox beat the hope.

  19. Don M June 12, 2020 at 7:39 am Reply

    Henk and I bantered back and forth over several different subjects. It was interesting conversation. I do not know what to say therefore I acknowledge the information and say nothing more.

  20. A.Coleman June 17, 2020 at 1:45 pm Reply

    Wow – without Henk and L currently not posting it has been almost a week since there was a post on Floxie Hope!!

    Don’t have a lot to add other than just checking in to the site to see how everyone is doing. Hope things are well and that is why there are not many posts. Personally hit a bad day Monday but overall trending in the correct direction. One major symptom – brain fog still impacting my life. Digestive issues are nearly corrected and neuropathy, while still present is very manageable most days.

    I do have something interesting to share relative to my brain fog. I typically start the day with a light headache; but no brain fog / lightheadedness; headache will go away in an hour or so then around noon brain fog / lightheadedness starts creeping in. IF i do some cardio exercise (around 15 to 20 minutes seems to be enough) then I get some relief in the afternoon. I typically try to exercise a bit again around 5:00 PM. Brain fog will continue to impact me off and on until around 8:00 PM and then for those magic hours from 8 until I go to bed I am pretty much a normal person again. This has resulted in some late nights as I try to “hold on” to that normal. I do note that I still suffer from insomnia though it is slowly improving too; when I actually sleep through the night a few nights in a row my brain fog will be better; if I have multiple nights with less than 6 hours of sleep in a row then brain fog is a bit worse – but this isn’t the whole answer. I hate drugs but have thought a bit about trying a short course of Ambien to see if it makes my brain fog go away.

    Any thoughts on the brain fog and the positive impact of exercise? Note that eating also helps some; but not as much as cardio, so do you think that is a clue? Also why does it get better around 8 most days?

    I’ve had ultrasounds to check that my major arteries leading to the head are not blocked; which is a known FQ impact. My BP is okay a tiny bit high 125/81 on average; and when I take it just after exercise it is usually lower not higher; but not by a lot – typically 118/79. Blood glucose is okay last time it was checked.

    Overall the brain fog is improving but VERY SLOWLY. It has been an impact in my life for 18 months or so now and basically gets less impactful rather than moving the time of impact to be shorter. IF it continues to diminish at this pace it may be another one to two years before it goes away; so any thoughts to help push it along would be appreciated. I have considered if I have a cerebral spinal fluid leak and think that is possible. Next visit to neurologist I am going to push for an X-ray / MRI to try to find out what is going on; I actually think that traditional western medicine might be able to help me here if I can get them on the right track.

    All your thoughts and feedback are appreciated. Stay safe and keep hope alive.

    • Barbara Arnold June 18, 2020 at 1:07 am Reply

      I think we are all a bit in shock about Henk. Your right it’s weird without him.
      L……it’s time you came back. Your needed.

      Here are some things that have helped other floxies from my floxie group about what helped with brain fog.
      I suggest you research then decide what to take, but do it slowly, not all at once, then you can measure if it helps or not. In the begining over 5 years ago, I made the mistake of taking to many things and not having a clue what worked and what didn’t.

      FOLINIC ACID LOZENGES (NOT FOLIC ACID)

      PPQ taken with Coq10 UBIQUINOL

      MAGNESIUM L-THREONATE, passes the blood brain barrier.

      NAC

      Hope this helps.

      • A.Coleman June 19, 2020 at 9:40 am Reply

        Barb, thanks for your ideas. I already take folinic acid (I am a C566T heterozygote for MTHFR) and have been taking this for some time. I have overmethylation issues and have to go slow with this supplement.

        I have tried the PPQ supplement in the past and noticed no improvement and have taken Coq10 several times too without seeing an impact.

        I recently switched out some of my Mg glycinate and replaced it with Mg threonate. Definality had a positive impact at first; but it has plateaued and is no longer providing continued positive movement. I am still taking it – and hoping that as time goes on it will help.

        I have been taking a liposomal glutathione for the last few years (instead of NAC).

        So, I think I am doing everything your would suggest from a supplementation protocol other than the PPQ. I may order some more and give that a try.

    • Michael June 18, 2020 at 2:01 am Reply

      I have the same issue. Last couple of weeks my neuropathy has been a lot better and I’ve been exercising more. But today around midday I hit a brick wall with the Brian fog. I really crashed. Totally destroyed. I had to go home early. Now laying in bed at around 9pm I don’t feel too bad. And I’ll be good in the morning I expect. But the brain fog is totally devastating.

      • A.Coleman June 19, 2020 at 9:44 am Reply

        Michael, so sorry to hear; especially as you had been excited recently with your positive changes in neuropathy. I haven’t gotten so bad that I had to miss work; but I admit to a few days of sitting there pretending to work while I waited to go home. Even now I try to schedule all my important work to complete before noon and have also found myself doing some “catch up” work late in the evenings when I feel better.

        I hope that your brain fog and lightheadedness don’t progress any further and that you get some relief. Trying the suggestions Barbara suggested above might help. I know that for me the Mg Threonate did help; but didn’t take away the brain fog.

        Be glad that you live in NZ and can live a pretty normal life not trapped at home like the rest of us; I know that spending the last three months trapped at home hasn’t helped my floxie symptoms.

    • Don M June 18, 2020 at 5:51 am Reply

      A. Coleman…….. Re the brain fog. Sleep deprivation and low blood oxygen level are contributors. Get a finger oxygen meter. Go back in the posts and read about the Aculief.
      It is a gadget that maintains pressure on the L14 pressure point between the thumb and first finger. Read the information about the things that this pressure point can help. Anxiety and better quality sleep are 2 things. Not everyone is helped but it is sure worth a try.
      https://aculief.com/
      Get your own glucose meter and check your fasting glucose level occasionally. Blood sugar bounces around like a football. The only stable and more accurate reading is the A1C blood test.

      • A.Coleman June 19, 2020 at 9:45 am Reply

        Thanks for the suggestion Don. Early on in my floxie journey acupuncture provided some relief for my neuropathy and digestive problems. I had seen your earlier post; but not read caretully. I have ordered an aculief device and will report back in a while; if nothing else it will hopefully help the stress and anxiety of being a floxie.

        • Don M June 20, 2020 at 6:48 am

          A. Coleman……. Your very welcome. I seem to have found that the Aculief helps eliminate the head pressure problem and accompanying head ache. It is highly touted for migraine headaches. My stiff neck is better when I am using Aculief. My appraisal about it for reducing anxiety episodes is still out. I have found that CBD oil seems to help with anxiety and putting the two together should net some relief. Random anxiety episodes are very aggravating. Especially when one is trying to sleep. Does it improve one’s sleep? I think so and it certainly doesn’t hurt anything to have it on your hand over night. All around the Aculief appears to be something every floxie should try. It may help to decrease the number of maladies that we encounter.
          The price is acceptable and really cheap if it does for a person what it is touted to do.
          Try it……… The two pack costs less than $40. Amazon, eBay or the Aculief web site.
          https://aculief.com/

          The Aculif is based on Chinese acupressure that has been around a long time. Between the thumb and first finger is the acupressure point L-14. By pressing on this location it causes many different “beneficial” things to happen in the body.

        • A.Coleman June 22, 2020 at 6:51 am

          Don, thanks for the additional information about how the Aculief has helped you. I have some of the same symptoms. It actually started with a sore, stiff neck and eventually included head pressure, headaches and brain fog. You don’t often hear about floxies suffering from stiff necks.

          My stiff neck had been getting much better; then about three weeks ago I had a relapse. I had been taking RF-Curcumin by Thorne and quit since it hadn’t seemed to help my knee problems much; but the relapse started a week or so after I quit.

          So, now I am examining the possibility the curcumin was helping my neck. I got another bottle and re-started the supplement a few days ago. So far no miracle; but I know it takes time with supplements; so fingers crossed. I will let you know if I become convinced the curcumin helped my neck.

          The Aculief is supposed to be here in a couple of days. Do you wear yours all the time or just at night?

        • Don M June 23, 2020 at 6:22 pm

          A. Coleman………….. Yes I do use the Aculief all night. During the day I will use it when ever I feel one of my anxiety attacks coming on or when I begin to feel the head pressure. I switch it from one hand to the other. To long on one spot gets a little sore.
          The L-14 acupressure spot is supposed to be beneficial for many different things. In this “10 best acupressure points” the L-14 spot keeps coming up.
          https://www.modernreflexology.com/acupressure-points-for-body-aches/

        • A.Coleman June 30, 2020 at 1:31 pm

          Don M

          Been using the aculief for a couple of days. Early feedback:

          Seems to help headaches quite a bit
          Doesn’t have an impact on brain fog that I can tell – darn because that is what really impacts my life these days.
          Haven’t had an anxiety / panic attack (and hopefully won’t – they are down to one or two a month now) so not sure about its role there.

        • Don M July 2, 2020 at 5:25 am

          A. Coleman…. The benefits from the Aculief seem to be rather subtle. Benefits other than the headache issue sometimes are hardly preceptable but I think other results may depend on just how strong the endorphin actions of a person are. It appears that the thing that acupressure point L-14 affects most is the pain factor which is based on the person’s endorphin production.
          I do find that there is a calming effect when used to combat anxiety. Nothing over whelming but again I say “subtle” enough to warrant using the Aculief.

    • Andrea June 18, 2020 at 11:42 am Reply

      A. Coleman, one of the scariest symptoms I’ve suffered was, together with the excruciating pain in my lower body, the lightheadness and brain fog. I also suffered from short breath during that time. I’m almost sure that completely giving up coffe, tea etc had a huge impact on it. It’s been almost two years since my last coffee. Are you drinking coffee,tea or any caffeinated drink by any chance? I too remember that during my worst flox outbreak, in the summer of ’17, there were times where I was feeling a little better and times when everything was crushing me, during the same day. Sure enough the lack of sleep is soemthing terrible, as you noticed, you feel better whenever you can sleep at least 6 days per night. I would give everything to sleep well and enough again. I’m so tired. Anyway, I don’t know much about Ambien, so I can’t help you in that regard.
      PS, yes Henk’s loss was a hard thing to metabolize, and this chat would never been the same without him.
      Also L’s silence is starting to worry me, I hope everything it’s fine with her…
      Anyway, I would try to keep answering questions on this website and not let everything go. We stil need to share our knowledge and keep us informed.

    • Roxanne Talmadge June 19, 2020 at 5:10 am Reply

      I’ve been having an awful time since getting a flu vaccine in February. Not sure if it caused a relaspe of the Cipro side effects or if its a bad reaction to the vaccine or both. Yes, brain fog is one of the symptoms. Things seem to go in cycles. Physical and then mentally. Very frustrating.

  21. Krabiwi June 18, 2020 at 4:24 am Reply

    Rest in peace Henk. Very likely flox caused this cancer as the high amount of oxidative stress in various cells can even mutate the nucleus DNA and epigenics. Michalak et al already refered to this effect in his FQAD paper:
    ” Oxidative Stress and Epigenetic Regulation in Ageing and Age-Related Diseases”
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3794746/

    • Krabiwi June 18, 2020 at 4:27 am Reply

      This means flox murdered Henk.

      • Michael June 18, 2020 at 10:22 pm Reply

        I also am worried about mylong term outlook. What can I expect in the 20-30years?

        Neurodegenerative disease? Alzheimer’s? Parkinson’s? Cancer?

        • Andrea June 19, 2020 at 2:43 pm

          MIchael, i’ve thought a lot about that too in the past, but what’s the point? I mean, even healthy people can get those illness, why ruining our lives even more with bad thoughts? Sure, someone could argue that we could be more exposed to those things, but it’s not written anywhere. Just try to do whatever it take to get better right now, and don’t worry too much about the future, if you can. Just my suggestion of course.

        • Krabiwi June 20, 2020 at 8:31 am

          Michael, it’s therapeutical important to get rid of all those mutated mtDNA copies in the long run to prevent them from clonal expansion and further oxidizing all cell parts which among others can cause cancer and alzheimer etc. Keywords for self study: NAD+, niacinamide, mitophagy, autophagy, intermitting fasting

        • Michael June 20, 2020 at 3:59 pm

          Holy crap you think that’s what it is? Colonial proliferation of damaged mitochondria? Ffs … I just want to cry.

        • A.Coleman June 22, 2020 at 7:16 am

          Michael,

          What Krabiwi means by clonal proliferation is that mitochondria do not undergo sexual reproduction but reproduce by making an exact copy of themselves. Of course there is always the chance for mutation.

          Many of your mitochondria were damaged (Read mutated) by the Fluoroquinolone and then began reproducing with those mutated genes in place. Those mutated mitochondria are more common in nerve cells and tendon cells in floxies; thus all our nerve problems and tendon issues. Probably some of your nerve cells were never affected and are reproducing with “normal type” genes.

          Over time the “normal” mitochondria will hopefully out-reproduce the damaged mitochondria. There are various mechanisms that make the normal mitochondria more fit than the damaged mitochondria and you have to wait it out while supporting your body with supplementation as much as possible.

          Depending on how much the FQ damaged your mitochondria that wait might be fairly short or very long. The younger you are when floxed the shorter the time to wait because your mitochondria are dividing faster than when you are older.

          I am nearing five years of being a floxie. Very few of my symptoms have completely gone away; but most are manageable with the exception of my brain fog and fatigue. I was 47 when floxed and was hit by the double whammy of FQ taken with an NSAID, which made the impact so much worse.

          I know from reading other floxie recovery stories that the fatigue is nearly always the last symptom to go because your body is busy trying to recover and until everything else is “fixed” you will have fatigue.

          I fully expect to reach a stage sometime in the future where all my symptoms are in that manageable stage but also expect to have flares for many years after; potentially the rest of my life. The one thing I hold on to is that my symptoms are always changing and mostly for the better. The symptoms I have experienced that were not there at the onset are the ones that I most struggle with today. Basically it seems in my body that milder symptoms take 24 to 36 months to correct and the more severe symptoms have never completely gone away but get manageable in the same time frame.

          So, back to Krabiwi’s suggestion is to try to accelerate the process of getting rid of those damaged mitochondria by taking certain supplements and doing intermittent fasting. Check out your B vitamin and you will find niacin, which is a form or both NAD+ and niacinamide. Based on how much B3 is in your supplement you might want to bump it up a little with NAD+. If your digestive system is not too damaged (mine was highly impacted by FQ) then you might consider the intermittent fasting. Start by eating dinner a bit early then skipping breakfast one day a week. If that is okay then consider a 24 hour fast every two weeks or so.

        • Krabiwi June 22, 2020 at 8:58 am

          Indeed my theory is that progressive flox symptoms are among others (beside oxidative lifestyle with mal nutrition, medis etc) a consequence of clonal expansion of mutated mtDNA. As those mutated DNA copies are less complex than wildtype mtDNA, they proliferate faster. This would also explain cycles as the body desperately tries to fight clonal expansion with strong mitophagy events to prevent the mutated copies to outrun the wildtype copies. Those strong mitophagy events would flare up symptomes due to the temporary lack of mitochondrial content and life energy ATP.

          There are some studies. Google Keywords: clonal expansion + mtDNA

        • Michael June 24, 2020 at 1:24 am

          I like your theory I think you must be right. It also explains why the recovery periods are so very long and slow. And why some people get “delayed severe” reactions, the true extent of the severity manifesting many months or even over a year after the initial poisoning. But what can we do? It is essentially therefore and acquired mitochondrial disease.

        • Krabiwi June 26, 2020 at 7:35 pm

          Since being floxed with a serious crippling onset 2 years ago I do among others intermitting fasting, low carb and high dosaging of Niacinamide to promote autophagy and mitophagy. Stable back to 95% these days, in some areas already better than pre flox.

  22. Michael June 20, 2020 at 3:59 pm Reply

    Clonal* proliferation

  23. Andrea June 23, 2020 at 2:43 pm Reply

    Lisa. I know maybe I’m asking a little too much, but L hasn’t posted for a long time. Could you please send her an email. I’m getting a little worried. Thank you so much.

    • Lisa June 24, 2020 at 5:56 am Reply

      Hi Andrea,

      L has decided to take a break from commenting on floxie hope. She is doing alright though.

      I will let her know that you are checking in and that the community misses her.

      xoxo,
      Lisa

      • Andrea June 24, 2020 at 10:02 am Reply

        Thnaks Lisa, that’s all I wanted to know. Thank you again 🙂

      • Madge Hirsch June 25, 2020 at 4:12 pm Reply

        Thank you Lisa for letting us know that L is ok. I hope she returns as her contributions are valuable.

  24. Michael June 25, 2020 at 5:12 pm Reply

    Had anybody had toxicity from B6. I’ve been taking 50mg p-5-p every day and yesterday I took an extra tablet (total 100mg) and felt dizzy and suddenly anxious and spacey.

    I’m sure it was the B6. I’m wondering whether it causes brain fog also. I’m going to lay off it for a while (half life is 30 days).

    Michael

    • Virginia June 25, 2020 at 7:45 pm Reply

      Hi Michael, sorry about the bad reaction to taking 50 mg. of B6. I’ve heard that 50 mg per day is the upper safe limit for B6, but maybe some people need to take less to avoid side effects. Taking more than 50 a day can lead to permanent neuropathy, I’ve heard, so I’m very cautious with it, just taking 25 a day. Maybe there’s even more B6 in your multivitamin or vitamin B complex if you take those, so it could be even more than 50 mg. you were taking.

      • Michael June 25, 2020 at 9:05 pm Reply

        Thanks Virginia, that’s interesting you should say that because I was under the impression that you really needed to be dosing with 100s of milligrams of B6 for a long period of time for toxicity to develop.

        My p-5-p supplement comes in 50mg tablets and a B complex vitamin I took before contained B6 at a dose of 100mg (pyridoxine). That was the one by Solgar which is a very reputable brand.

        But I just read today that in Holland the upper safe limit has been set by law at 21mg for supplements!

        “From October 1st, 2018, dietary supplements may not contain a daily dose of more than 21 milligram vitamin B6 in the Netherlands. A higher vitamin B6 intake can have a harmful effect on health.”

        So maybe you are right!

        In any case I’ve stopped taking any p-5-p and any supplements / multivitamins altogether right now and will lay off for at least a month or so and see where I am then. Thanks for the tip…

        • Virginia June 25, 2020 at 9:20 pm

          You’re welcome, Michael! Interesting about the Holland upper safe limit; makes sense to me. I think 100 mg. in that Solgar formulation is too much, though it is a good brand. I hope you’ll get over your symptoms soon.

        • A.Coleman June 26, 2020 at 2:40 pm

          Michael,

          Not a bad idea to give the B6 a rest; but be prepared. Your neuropathy will get worse if you drop the B12 and folate along with the B6 and some other things you might not realize may start being factors.

          Don’t remember have you ever been tested for MTHFR?

          One of the best, and also hardest things I have done in my floxie journey was stop all my B vitamins for three months. Lots of symptoms came back; but when I restarted my body was more prepared to help make its own B vitamins.

          I now only take Bs every other day during the week (so Monday, Wednesday, and Friday) and take weekends off at my naturopath’s suggestion. It has actually helped lots of my symptoms; except for my neuropathy. That has gotten worse; though the pain hasn’t doubled and clearly I am taking less than half of the B vitamins I used to take.

          Once all my other problems start clearing up and my body is better able to process the methyl groups (I am a C677T heterozygote for MTHFR) I will probably increase the B vitamins to four days then five days a week; but don’t ever plan to go back to seven days a week. (I also plan to try a couple of months off the B vitamins again early next year.)

          Good luck.

        • Michael June 26, 2020 at 4:39 pm

          A.Coleman I remember you said you have a degree in Biochemistry. My first degree was in Pharmacology. What do you think of the potential for toxicity with P-5-P? From what I have read the way pyridoxine causes toxicity is that at high doses it blocks the active form (the P-5-P) from the enzymatic processes so that’s why you get toxicity which is similar in symptoms to B6 deficiency… so can you get toxic effects from the active form (from P-5-P)? I’m sure the answer is yeas but the real question is whether these are relevant at “normal but high doses” i.e. 50mg, 100mg, etc I would have though that 50-100mg of P-5-P would have been OK but my own experience and what Virginia said above, as well as what I read on some sites make me doubt this.

          Also how important do you think taking folate is? I was taking it before as metafolin but I haven’t been taking it for a while, assuming I get plenty from my diet which is rich in beans, legumes and grains. But I will start supplementing again if necessary.

        • A.Coleman June 30, 2020 at 1:26 pm

          Michael, not sure about the P5P toxicity vs other forms of B6. I think all forms can lead to toxicity. I would not take more than 50mcg per day and wouldn’t take that amount long. I take about 6 mcg of the P5P form when I take B vitamins.

          As to taking folate – it can be VERY important but that all depends on your MTHFR status. I suspect that most floxies who take over a year to recover (that’s me) have some or multiple MTHFR mutations. For me as a C677T mutant I only metabolize folate about 65% as effectively as a “normal” person. That means that taking a form of B9 other than folic acid is important. Taking metafolin is a big step. Because of my mutation and my mitochondria impairment due to FQ I have a really hard time processing the methylated version of folate. I can process a bit; but to make it easier I use folinic acid (NOT folic acid); which is much more bioavaialbe than folic acid; but not the fully methylated form that triggers my body into a toxic overload situation.

          If you haven’t been tested for MTHFR I would strongly suggest you do so; once you know that and have your B12, B6, Folate, and Homocysteine levels tested too you can tailor a specific approach to vitamin B supplementation that fits your genotype and current levels of B vitamins.

          If you are normal genetically for MTHFR you certainly don’t need the metafolin; but might be okay including some folinic acid. If you body doesn’t need it; it won’t methylate it and it doesn’t have a big negative impact. If you are heterozygous for one or more of the MHTFR genes or homozygous recessive then you might consider a methylated version of folate it you can tolearte it.

          Good luck

  25. Michael July 2, 2020 at 1:22 am Reply

    What is the pathophysiology of the brain fog caused by Ciprofloxacin? is it neuronal cell death? is it axonal degeneration? Is it mitochondrial dysfunction?

    • A.Coleman July 2, 2020 at 8:41 am Reply

      Michael – who really knows.

      There is a good post on Floxie Hope on the topic (just google) and probably a better one on My Quinn Story, “Is Fluoroquinolone Brain Fog Actually Chemo Brain?” http://www.myquinstory.info/is-fluoroquinolone-brain-fog-actually-chemobrain/

      I think the hypothesis in the My Quinn Story is plausible. In my own case I also suspect that I am suffering from Cerebral Spinal Fluid leaks – probably lots of tiny leaks that heal and open repeatedly due to my mitochondrial dysfunction. That would explain my stiff neck and other problems in addition to brain fog and headaches. I can’t convince a neurologist though to do the necessary tests.

      I do think this is one place where western medicine might help me if they would just take a holistic approach instead of focusing on their own sub-specialities. Regardless my brain fog is getting better; but I have suffered with it for over 18 months already and at the current pace have at least 9 months more to go – so probably another year or more.

      It is the single worse floxie symptom I have ever dealt with – other than the gastroparesis.

      • Michael July 2, 2020 at 11:26 pm Reply

        A.Coleman did your brain fog come on some time after the rest of the symptoms ? I think this is what is happening to me now …

        The neuropathy is really easing off now. It’s been 2 weeks where I’m only getting minor symptoms like a bit of tingling etc

        But the brain fog is hitting me … I had a bit of fatigue around 6 months post flox but that cleared and I remember thinking very definitely that my CNS symptoms were the first to clear.

        But recently I feel like I have concussion. Mornings are OK but by mid to late afternoon I’m like a zombie!

        Yesterday I wanted to order a salmon and cream cheese bagel and I was like:

        I’ll have a… bagel … cream cheese … salmon and bagel ….

        I mean it’s funny but still ridiculous and I’m a bit worried but I think it’s just going to take a long time to clear up

        I do think it’s chemo brain also

        • A.Coleman July 3, 2020 at 8:05 am

          Michael,

          As you know I am a long time floxie. Nearing my five year post – floxing. I didn’t start having problems with my head / neck for nearly two years after floxing. It started with a sore stiff neck, progressed to horrible 9 out of 10 headaches and then moved on to brain fog and lightheadedness.

          I still deal with all those but the stiff neck and headaches are getting very slowly better. Neck problems range from a 1 to 3 on a scale of 0 to 10 most days. I still have headaches about 40% of the time; but they are usually early in the day and go away by noon or earlier.

          For me the brain fog is usually pretty good when I get up and starts getting worse around noon; but oddly does get much better around 7 or 8 at night most nights. The time of day it impacts me isn’t shortening but the significance of the problems gets less each month. In January I would rate the impact as a 8 our of 10 and now it ranges from a 3 to 7 out of 10 during those hours.

        • Michael July 3, 2020 at 5:17 pm

          Yeah I think we have the same phenotype A.Coleman. For FQ toxicity. We have the neurotoxic phenotype. What we have I think is a form of chronic toxic encephalopathy.

          But I think it’s receptor-mediated from what I read about chemo brain … GABA etc following epigenetic effects although I’m not contradicting your hypothesis about the CSF leaks. I don’t have neck pain or headaches mind you.

          I do feel my IQ is preserved I’m still able to think quite well but when the fog comes on again about kiddish to early afternoon I’m a bit of a zombie.

          I think this will gradually get better A.Coleman but we will have to work around it for now.

        • Michael July 3, 2020 at 5:29 pm

          Have you read this 2016 review? I think it’s on point and very informative.

          “Chemo brain: A critical review and causal hypothesis of link between cytokines and epigenetic reprogramming associated with chemotherapy

          Xiao-Min Wang, Brian Walitt, […], and Zhang-Jin Zhang”

          https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4750385/

  26. Don M July 2, 2020 at 5:52 pm Reply

    A. Coleman…… Very good article. I agree that brain fog and dizziness are the two most annoying things. Strangely the Aculief does help a bit. I understand that there are pressure points on each side at the back of the neck where it meets the bottom of the skull bones. It may have some bearing on neck stiffness. Hard to hold one’s thumbs there very long.

  27. Don M July 5, 2020 at 6:48 am Reply

    A. Coleman…… Regarding pain. Investigate PEMF. There is plenty of information if you Google PEMF. A good place to start is https://www.drpawluk.com/ He claims to be an expert on the subject. His devices are rather expensive but there are others on the market that run in the $300 to $400 range. Check out Sota and Dr.Clark MagZapper for the ones under $400. Cheaper ones do not make enough power to be very effective. Only one web site reference is allowed here. If one tries to post more the algorithm will not allow the post.

    • Don M July 12, 2020 at 6:20 pm Reply

      A. Coleman……. Check this web site out. https://www.healthline.com/health/pressure-points-for-neck In the article it discusses the He Gu (L-14) pressure point and the Zhong Zu (TE-3) pressure points. The Aculief gadget can be used on the Zhong Zu (TE-3) point the same way it is used between the thumb and finger. The article also shows other pressure points that help neck pain.

  28. Moe July 11, 2020 at 8:07 am Reply

    Is here somebody except those who already share their stories that recovered 100% from Levofloxacin ?

    • Don M July 12, 2020 at 7:14 am Reply

      Moe……. I draw a lot of flack when I say that there is never a full recovery but there is “REMISSION” of the symptoms that one must deal with. When the antibiotic has reached so deep into the DNA and mitochondria and caused so many problems I think that it is mighty hard to totally eliminate it’s destruction. Many people feel that they are “recovered” but is it a full recovery or a very welcome remission? I read about so many people who say that years down the road something pops up. That does not mean that we all should not strive to make things as good as we can. It behooves each floxed person to learn as much as we can about the insidious antibiotic and inform as many people as we can about it’s dangers. And at the same time trying to improve our own situation.

  29. Carla Lockwood July 11, 2020 at 1:02 pm Reply

    Hi Moe … I am seven years out and have been following FloxieHope off and on for most of those years, although I haven’t yet contributed my considerable healing story. I don’t want to disillusion you, but it’s not certain that you can recover 100%. Of course, I’m speaking from the aged end of the spectrum, since my flox symptoms (from Levaquin) began at 70. I have been diligently working toward total healing, but at my age it’s fighting my way up the down escalator.

    Nevertheless, I am still healing and function is slowly recovering. I would say I’m at 80-90% on my ‘good’ days. Considering that 4 years ago I was completely bedridden and in total pain, I think I have come a long way. If I can get this far at my age, those who are younger could heal even more efficiently and may claim close to 100% recovery.

    Some of my observations from my experience, and from following comments on several Floxie sites:
    The extreme anxiety and depression seem to happen in the early stages of floxing (although the “brain fog” can continue unpredictably). Perhaps the anxiety and depression is in some ways a natural reaction to being poisoned and becoming disabled, with the intensity of it aggravated by the drug. I want to reassure those who are at that stage to know that it gets better, that the extreme emotional changes level out. Perhaps realization and acceptance help, changing reaction into the determination to overcome the effects. Music and meditation at this point can be very effective, especially if you are bedridden and can’t do much else.

    A lot of people, me included, want to continue exercise as a way to help heal. I learned the hard way that exercise must be curtailed when symptoms begin to appear. I was continuing to do my morning Yoga Sun Salute, part of which is Downward Dog, which stretches out the back of your legs — and the Achille’s tendon. Early in the progression of the damage done by Fluoroquinolones, the connective tissues become fragile and can easily rupture. Stretches can cause that, which is how I ended up with a probable Achille’s tendon rupture that developed into Stevens-Johnson Syndrome, a terrible acute inflammation of the foot and ankle. I have pictures. They are horrible. My friends thought I would have to have the foot amputated. I worked on it for more than a year, and what finally enabled it to heal was fresh Cannabis juice from shade leaves. I had tried many other forms of Cannabis (as well as countless other potential cures), but it was not until, in desperation, I tried juicing the fresh leaves that it made a difference. Worked wonders. Perhaps it was the abundance of chlorophyll, which would mean that juicing other greens (kale, spinach, etc.) might help as well. It may have been that the leaves contain more CBD and less THC.
    My point, though, is that those who are newly floxed should avoid any exercise which strains the tendons, such as stretches, lifting weight, etc. Mild exercise in the pool seems okay. Mainly, remember your connections are fragile. They do recover as you go, but take it slowly, and stop if there is pain.

    I have found that my healing journey has fallen into five categories. Within each category are a number of practices and treatments, which I can list and explain in later postings.
    These are the “Five Steps to Healing” I have developed:
    I. CLEANSE: Releasing toxins created by the poison and cleansing them from the body.
    II. TREAT: Addressing the damage done by the toxins.
    III. REBUILD: Building healthy new tissue with diet, supplements and herbs.
    IV: MOVE: Keep moving carefully as much as you can when you can.
    V: BELIEVE: Knowing with certainty that you will heal.

    I’ll be glad to expand on any of those categories or answer any questions.

  30. Don M July 12, 2020 at 6:56 am Reply

    Carla Lockwood…….. Thank you for your post. In August I will be 86. Your not alone in the recovery attempt when it comes to age.

  31. CARLA LOCKWOOD July 14, 2020 at 9:35 am Reply

    Bravo, Don! I hope you are doing well. I’m finally at the stage where I want to exercise in the pool, and of course the pools have been shut down due to the virus. However, last week the City of Santa Rosa opened its big outdoor pool for scheduled use, with screening. I was able to participate last Friday, and it went very well. My legs are sore, but it’s muscle soreness from exercise rather than the random FQ pain. I highly recommend water exercise for recovery.

  32. Janine July 16, 2020 at 11:52 am Reply

    Hallo i took Levofloxacin 4 Months ago, i would love to exchange myself with floxies who also took levo. Because i heard is the strongest one when you’re talking about the side effects…..

    Especially when you are from Vancouver, would love to hear if there is an Doctor or alternative medicine who treated some floxies or at least knows that i am not crazy

  33. Janine July 16, 2020 at 11:57 am Reply

    Sorry i forgot to post my E-mail, will free to write me whenever you want, it is j.risse100@gmail.com

    • Don M July 17, 2020 at 9:17 am Reply

      Janine………. Hi. I live in Arizona so will be of little help in finding a doctor close to you. http://www.myquinstory.info/ Read some of the stories from people who have been floxed. Sometimes there are tidbits of helpful information found there.
      Also I wish you good luck in finding a doctor that “will” understand your underlying problem.
      Most want to run a battery of tests to rule out things and don’t want to admit to the fact that Leviquin is a nasty antibiotic and probably the nastiest of the bunch.
      You can get a lot of information from visiting the web sites that are centered around Fluoroquinolone Toxicity.
      Leviquin is a revved up version of ofloxicin. To get a new patent the makers added a second molecule of fluoride. And wala? We now have Lev……….ofloxicin. A newer but nastier antibiotic. Did you know that the original drug maker has discontinued the manufacture of Leviquin? I wonder why?

    • Don M July 17, 2020 at 9:45 am Reply

      Janine……. Check this out. Got $40 to spend? Check this out. https://www.fqtoxicity.com/
      The reason that I keep posting is because the checking alogarithm will allow only one reference post per posting. More more than one web site reference and it discards your post.

  34. Andrea July 20, 2020 at 2:50 pm Reply

    Hi guys. I haven’t posted for a while now, but from time to time i still read your posts. Just wanted to say hello to all of you, hoping that everyone is doing good (or better at least)…

  35. Don M July 31, 2020 at 3:39 pm Reply

    Don’t knock it until you have tried it. It is based on the thousand year old system of acupressure. https://www.youtube.com/watch?v=Th0ySbSUToY It may not work for you but you will never know until you have tried it. It works for me so I am passing on the idea.
    Acylief. Wearable acupressure. The best thing about it is that it helps to eliminate pain and other meds.

  36. A.Coleman August 5, 2020 at 7:15 am Reply

    Hey Floxies. Reading stories about COVID patients who are still sick months after their initial infection made me think of ourselves. I wonder how many of them developed pneumonia as a secondary infection and were given fluoroquinolones and it is fluoroquinolone toxicity they are suffering from not lingering COVID impacts or some combination of both.

    In some cursory investigations I found a story from Rachel Brummert who is a certified patient advocate and fluoroquinolone survivor. She contracted COVID and at the time of the post seemed to be on the road to recovery. Read her story here – https://www.drugwatch.com/beyond-side-effects/testing-positive-for-covid-19/

    • Madge Hirsch August 5, 2020 at 1:16 pm Reply

      Yes- I have been struck by the uncanny similarity of described “long haul ” covid symptoms to floxing symptoms. If the sufferers have not been given FQs as a treatment the only other explanation that sprang to mind was that the virus attacked the mitochondria.

  37. A.Coleman August 5, 2020 at 7:24 am Reply

    In a related post to my one above I unfortunately found at least one published, peer-reviewed paper pushing fluoroquinolones as a treatment for COVID – https://www.sciencedirect.com/science/article/pii/S0188440920309243

    If you don’t want to read the paper at the link above the sentence below should make you mad / frustrated. It was enough that I went out to the website for the hospital in Greece where this “doctor” works in an attempt to email them but was thwarted by the Greek alphabet when I got deeper in the site. If anybody reads Greek and wants to take a stab at emailing this “doctor” please do so.

    Here is the sentence relative to FQs:

    Noteworthy, respiratory fluoroquinolones are characterized by advantageous pharmacokinetic properties, leading to significantly higher concentrations in the lungs compared to serum, as well as an excellent safety profile comparable to other antibiotics used to treat respiratory infections, such as macrolides and b-lactams (13,14).

    We all know that the part about the excellent safety profile is a bunch of B.S.

    I read about the steroid treatment with Remdesivir being hopeful and if I was sick enough I would take a steroid at nearly five years post floxing; but you will never get another fluoroquinolone in my body.

  38. Dee August 5, 2020 at 2:14 pm Reply

    Kirst. Thanks for the suggestion on acid reflux book! I will check it out!!👍🏻

  39. Andrea August 6, 2020 at 6:30 am Reply

    Hello guys, any experience/bad reaction with Clonazepam (Klonopin or Rivotril)?
    Thanks.

  40. Louisa Mitchell August 10, 2020 at 6:47 am Reply

    These are all benzodiazepines a very dangerous group of drugs.

  41. Louisa Mitchell August 10, 2020 at 7:27 am Reply
  42. Michael August 11, 2020 at 7:45 pm Reply

    Just watched this interview with Mikhaila Peterson.

    Basically when Jordan Peterson got COVID he was also given a FQ and appears he has been floxed. Especially bad as he was withdrawing from Benzos at the time:

  43. Barbara Arnold August 11, 2020 at 10:20 pm Reply

    Killing us slowly…………

  44. Andrea August 13, 2020 at 3:18 am Reply

    Thanks Louisa and Michael. Yes, benzos are terrible, but so is my chronic pelvic pain, which is destroying my life by not letting me sleep at night. This last medication seems to help quite a bit in that regard, but I always wake up groggy and tired, expecially when I take it the next morning again. And keep in mind, I’m actually taking a very low dosage!
    I wanted that doctor to prescribe to me some medical grade cannabis, but : “NOOOO, there’s no proof that cannabis help with chronic pelvic pain”…Bullcrap! Luckly in Sept. I would be able to get an appointment with another docotr who belives in the properties of Cannabis and prescribes it for different problems. Let’s hope I won’t became a junky with this crap in the meantime…

    • Barbara Arnold August 13, 2020 at 9:02 am Reply

      Have you tried Kratom Andrea ?

      • Andrea August 13, 2020 at 9:58 am Reply

        No Barbara, never tried it. I’m going to do a cystoscopy soon, with possible biopsy of the bladder, to see if tere’s really an interstitial cistitis, and if so, the urologist, was suggesting to do some ialuronic acid instillation into the bladder…but my problem is that there’s still no diagnosis for my pain, and it will probably never be

    • Don M August 13, 2020 at 10:10 am Reply

      Andrea……. I have no idea if it might help you because I have no idea just exactly what the area is or the cause of your pelvic pain. But…. Have you looked at hand held COLD LASERS? The cold laser is non invasive and above all it is not a medication. Using a cold laser WILL mitigate pain. I know this first hand because I use one regularly. A cold laser treatment will not last long but it can be repeated as many times as one wishes because it is a non invasive thing. Don’t buy a cheap one because they do not produce enough power to be really useful. There are many of the cheap ones listed on eBay.
      A good quality one that is made in Israel is just under $1,000. https://www.lasertrx.com/
      Also available on eBay and Amazon. I wouldn’t be without mine.

      Also PEMF will mitigate pain. It is pulsed magnetics generated by a unit into a hand held paddle..

  45. Don M August 13, 2020 at 10:21 am Reply

    Andrea…………. https://www.healthline.com/health/cold-laser-therapy#at–home-use Can only put one web referral per posting otherwise the checkers won’t post it.

  46. Don M August 13, 2020 at 10:27 am Reply

    Andrea……. PEMF Information from and expert on PEMF https://www.drpawluk.com/

  47. Don M August 13, 2020 at 10:29 am Reply

    Andrea…………… An example of the PEMP unit. https://drhuldaclarksupplies.com/magzapper.html
    I have this one and use it regularly. And yes it does help.

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