Welcome to 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/

[This site is about Fluoroquinolone Toxicity Syndrome, Floxing, cipro side-effects, levaquin side-effects, avelox side-effects, floxin side-effects, fluoroquinolone antibiotics, antibiotic side-effects, dangerous drugs, cipro danger, levaquin danger, avelox danger, cipro reaction, levaquin reaction, avelox reaction, floxin reaction, Cipro recovery, levaquin recovery, avelox recovery, floxin recovery, recovery stories, fluoroquinolone poisoning, adverse drug reaction, healing, hope, and any other keywords that are important. :) ]

Please support Floxie Hope –

Thank you!  More info about supporting this site can be found HERE

The Fluoroquinolone Toxicity Solution Ebook has helped many Floxies to recover, including Cindy and Ruth.  Affiliate link –

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4,372 thoughts on “Welcome to Floxie Hope

  1. BW January 14, 2015 at 5:00 pm Reply

    Does anyone here know what robert grozier died from? Was is directly related to his flox symptoms or was there another cause?

    • Destruida los Restos January 15, 2015 at 7:42 pm Reply

      No, I don’t know and I thinmk very few people do, but he did take alot of other medication because of his terrible neurological suffering and I think it may have been those other meds that eventually finished him off. In the last photo of him, he’s unrecognisable. He was such a very nice, kind man.

  2. lori January 14, 2015 at 5:31 pm Reply

    Hi. I took cipro exactly a year ago for kidney infections. Here I am a year later, have seen 14 different doctors. None of them know what is wrong with me ! I got diagnosed with peripheral neuropathy n carpal n cubital tunnel on Aug 15 2014. Btw….nothing ever hurt me so bad in all my life as that shock test! NOthing! My elbow has been killing me ever since! I have been told possibly fibromyalgia, mono EPV, veins are diseased, in Nov 2014 blood test positive for RA. Sent to rheumatologist more blood tests and he says no I do not have RA. Low vitamen D (12) and high absolute lymphocytes is all the hundreds of blood tests reveal. Been tested for MS, lupus,hepatitis,gout, I cant remember everything right now. Every single one of my heart tests, xrays, ultrasounds,EKG ECG, and every other test I’ve had this year, unremarkable! Had biopsies from swollen foot with red hot spot that moved around. Taken out of hot spot. Differential diagnosis are hypothyroidism, connective tissue disease and something uticarial vasculitis. I’ve never been sick in my life like this. Always been healthy and very rarely did I even go to the doctor. Always active. I can barely walk most days. About to be fired after over 25 years at my job. Legs swollen. Feet always swollen. Butt hurts now. Back hurts. Elbow hurts so bad brings me to tears to put on my coat or take it off. When I stand up which have to do very slowly it feels like my tendons are going to rip away from bones from back of ankles all the way my legs. Have gained 3o pounds cause I cant do nothing. Can’t even start lawn mower. Wanted cut my arm off after trying to weed EAT for 5 feet. Can’t touch my legs they hurt so bad. My hands go so numb it feels like I get shocked to touch something. Sharp pains constantly every where that almost drop me! I can barely type or write most days now. Has gotten only worse every day. I’ve fell trying to stand up getting off toilet . My legs are so weak its pathetic. Im weak everywhere. Have zero muscle left. Couldn’t even get out of tub the other day. I am NEVER not hurting somewhere! I mean hurting bad! Can’t hardly stand it any longer. Have had two primary care doctors quit on me. Appt tomoro with new one. Always nauseated. Feverish off n on. Can’t remember anything. Always go blank lately really bad. My eyesight has totally went downhill past year. If I sit too long can’t hardly get back up. Can’t go grocery shopping. Too far to walk. So extremely exhausted all the time. Yet past couple months I’ve experienced insomnia for the first time ever. I’ve mentioned cipro poison only to be blown off n told no way. Last night…I went to urgent care…after missing work for over two weeks….and the doctor gave me a shot…I think called toradol…I cried myself to sleep…as usual the past two weeks it got so bad….and when I woke up I could not believe it! For the first time in one year I could take a step without it hurting! I turned on bathroom light n wasn’t in tears cause my arm n elbow weren’t shocked! I got off the toilet n STILL no pain or shocks or needles or nothing! And didnt even almost fall! I finally got both shoes on n actually had to tighten laces. My feet fit in them. I swear I have not felt so good! I finally made it work. But then about 9 am the tightening up starts. Swelling starts. Tingling. Numbness. Aches n pains all are completely back now! In tears all the way home. I feel like just giving up in so sick n tired of all of this! There has got to be a way…in this day n age …somebody knows how to test for cipro poisoning! N what to give us to get it out of us! So unfair! I pray for relief for us all! God bless!

    • Daniela January 14, 2015 at 7:42 pm Reply

      Hi Lori, welcome to the club. Try to keep your chin up and take care of yourself. And believe in yourself, even though the doctors tell you otherwise.

      I hate to say this, but the most important thing is try to avoid more medications, because of course I never even met you, but everything seems to make us worse. A medication made you this way, so you have to support your own body to repair itself, and that takes time.

      Your weight gain could also be “wheat belly.” Cipro gave me all kinds of digestive disturbances and sensitivities. Cutting out all grains helped me a lot to feel much better really quickly, and the weight falls off.

      You already found out that you can’t sit too much. So just move gently, but be careful because we tend to tear as well. You need to find the right balance. No dairy helps me here.

      Eyesight — I’m still trying to figure that out. maybe more carrots?

      I’ve been healing for five years now, but I am definitely healing. You will too. But really don’t try to find the solution in a bottle (medicine bottle, not alcohol. But you’ll find that drinking alcohol or even coffee is all but impossible now anyhow.)

      Take care ((((()))))

      • Destruida los Restos January 16, 2015 at 12:59 am Reply

        Eyesight – I keep telling everyone, euphrasaia (eufrasia in some languages) and you nee the homeopathic mother tincture, not any other extract. Also cold, used teabags are good, but euphrasia’s best. Its common name in England is eyebright. You can see a video of its effects on me on my blog. (Why do I bother and why does no-one ever take any notice of my suggestions? Dunno, mais tant pis pour eux.)

        • Peter January 17, 2015 at 1:45 am

          I’ll have to look into this as my eye problems started in October and are now terrible. Any light is blinding, my left eye droops (noticed it today), eye floaters, trouble focusing.

          1.5 years later, when do all the symptoms stop appearing? This is ridiculous.

        • Destruida los Restos January 17, 2015 at 1:30 pm

          I’ll give ypou more detailed information, Peter, but not tonoight. I was like that and really bad, but now I’m fine – you’ll be amazed at our powers of rcovery.

        • Destruida los Restos January 19, 2015 at 3:23 am

          Peter, you should protect your eyes from sunlight -from all light, but especially sunlight. If you can cope with sunglasses, wear really good quality ones – you need UV protection – or otherwise use a l arge, green eyeshade.
          Buy a homeopathic tincture of euphrasia officinalis from Ainsworths in Kondon or from another reputable homeopathic pharmacy and use a few drops in an eyebath (non-chlorinated water) two or three times a day (not more.) Aso use cold strong tea or cold used teabags – place the teabags or pads of cloth soaked in tea on your closed eyes for five minutes twice a day. (The tannin, I think, is what helps.)
          Just be patient, as those are the things that help and your sight will clear, gradually, but it may take a year or two to be completely clear.
          Don’r use euphrasia more than 2 or 3 times a day – enough is good, more is too much.

        • Daniela January 19, 2015 at 7:17 pm

          They have been raised on so much advertising which taught them to distrust historical wisdom, and even distrust their own instincts, so they can be sold things that their grandmothers could have remedied from the kitchen cupboard. And their law backs it up. Kind of frightening.

      • lori January 19, 2015 at 2:02 am Reply

        Thank you for your reply. and the info. i appreciate it. I have also noticed i do not sweat anymore. Have you noticed anything like this? I used to sweat so bad it was unreal. Maybe it is because i am in bed all the time this past year. I dont know. And also, have you noticed less hair growing on legs or armpits? Or your hair is falling out by the handfuls? Lori

        • Daniela January 19, 2015 at 7:09 pm

          Oh yes all of that. And cold all the time.

        • Destruida los Restos January 21, 2015 at 1:49 am

          Lori, you don’t sweat because your exocrine glands aren’t working. It’s called Sjogren’s Syndrome (with two dots above the ‘o’) but that’s just because the scientist or doctor Sjogren gave his name to it. Eventually they’ll start to work again.
          If you do use anti-perpirants or deodorants, stop – get a pierre d’Alun instead – it’s a natural crystal. Can also be used as after-shave and general astringent.

      • Destruida los Restos January 21, 2015 at 1:16 am Reply

        “They have been raised on so much advertising which taught them to distrust historical wisdom, and even distrust their own instincts, so they can be sold things that their grandmothers could have remedied from the kitchen cupboard. And their law backs it up. Kind of frightening.”

        I’ve just read this (WordPress comments system is rubbish) after writing the same thing below. I always think that Americans (especially Americans, but it’s creeping in everywhere) treat their bodies (and even their minds) as if they were expensive, modern motor-cars with everything electronic – they take them to be tuned with special machines, polish them with special products, get them exercised in spoecial exercise-garages where they have rolling roads and stuff, insure them for huge sums and work all hours to pay the insurance – and have no idea how they work or how to do simple maintennace at home!
        Flossing – one woman emailed me to ask whether her favourite brand of floss would be availabel in the U.K. Floss? Then I realised she meant for her teeth!

    • Debs January 15, 2015 at 8:18 am Reply

      Hi Lori ,

      Welcome to our parallel universe, sorry you got hit too. I am a long term survivor of FQ toxicity, & over 26 years I have experienced much of what you have over multiple floxings . I have still improved immensely since my last floxing ( of 7 ), & despite 12 years of being force-fed psychotropic poisons on top of this from my first floxing in 1988, so there IS hope for everyone to improve.

      One thing I would just like to say here is to please be VERY careful re drugs, especially something like Toradol, my guess is they did not even tell you anything about the possible risks of this drug ? . I have done a lot of research on many different drugs due to what has been done to me over the years, so always bearing in mind we are all different as to what we can or cannot tolerate, I would just like to caution you to be VERY careful re this one. Toradol is not your usual NSAID, but in fact carries a very serious toxic profile indeed

      http://www.drugs.com/pro/toradol.html

      • lori January 19, 2015 at 2:23 am Reply

        Thank you for your reply. I will keep that in mind. Since this happened i am against taking anything the doctors have tried to give me. I was in such a low mood and so ready to give up at that point i just felt like i didnt even care. and i know that is horrible to say….but sometimes it is soooo hard to stay positive when nobody will help and you have never been in pain like this or been so depressed. Have no income because you cant get to work.
        I cant even get any of the doctors to help me and fill out the FMLA paperwork for my job. Sometimes i am not even sure i will be able to do my job anymore. I dont know if or when i will be able to be productive and be at work every day and be dependable. I could qualify for disability since i cannot type or write more than half the time my hands are so numb….and that is an essential part of my job duties.(all it takes for the fed gov is one essential duty)…but without a doctor to help me with even the FMLA papers there is no way i could apply for a disability or medical retirement.
        (Hard to believe for 3 years prior to this i was taking care of my 2 1/2 year old granddaughter, by myself full time 24/7’s. I had custody of her. Got us both up and ready and out the door everyday at 520am, took her to daycare, picked her up, cooked her dinner every night, got her bathed, homework, doc appts, dental appts, everything. There is no possible way i could do that this past year. i can barely take care of myself anymore)
        sometimes i feel like i am going crazy or something. all this time and they still cant fix me???
        I am so happy for you that you are doing better! Gives me hope. and i need that right now thank you. lori

        • Destruida los Restos January 21, 2015 at 5:09 pm

          Lori, get some St. John’s Wort extract – not homeopathic, just a good quality herbal extract, or tablets; a few people react less well, but for most people it’s an excellent, safe, herbal mood-regulator – both a mild anti-depressant and a mild antianxyolitic.
          I’m not sure, so don’t count on it, but I think the Facebook FQ group, or the QVF, can help you to find a sympathetic doctor and/or to apply for disabilty payments.

    • Debs January 15, 2015 at 8:26 am Reply

      One other thing to keep in mind also, is ( again bearing in mind we are all unique ), that many of us cannot tolerate NSAIDS after floxing. Lisa has a post on this subject in the October 2014 Archives . my most severe floxing in fact the one which trashed me completely was with a Cipro & a high dose of an NSAID

  3. Peter January 14, 2015 at 9:18 pm Reply

    Has anyone had nail problems where the skin under the nail permanently recedes? So over time more and more of the nail becomes white and can be cut off without any issues? My right middle finger and both big toes have nails that are more or less coming off. The toes are worse and seem to be getting worse daily. If you consider your nail is this “—“, mine can be cut to this if i remove all the white “/\”. So both sides are losing skin under the nail and thus the amount of white is growing.

    I’ve been to a nail doctor and have not gotten anywhere. I just can’t stop it. Any ideas?

    • Melanie kemp January 15, 2015 at 11:25 am Reply

      Yes. One of my big toes and the toe nails are brittle

      • Peter January 16, 2015 at 1:18 am Reply

        I forgot to mention my second right tie is now brittle too. I guess I’m glad others have the issues, but I wish we’re could cure it.

        • Debs January 17, 2015 at 3:56 am

          Hi Peter ,
          Personally in my last floxing I had new symptoms appearing up to 18 months after being hit.

  4. rich January 15, 2015 at 7:22 am Reply

    i think i had this peter in my teens.. way before cipro… i think i was just digging too hard in the corners..so alot of white in the sides of nails…try not to cut as much off and dont dig… mine grew back in a year….

    • Peter January 16, 2015 at 1:20 am Reply

      Thanks for the input. I never had these problems before and don’t dig or pay much attention to my toes beyond cutting them when necessary. I keep hoping the skin will grow back, but from what I’ve read, i need to cure the underlying problem….the medicine effects…,which I’m not sure how still.

  5. Anna January 15, 2015 at 4:35 pm Reply

    Hi- just posting to offer a bit of hope. I took Levaquin for 5 days. On the 5th day I had such bad muscle and joint pain I could hardly walk and was house bound for 2 weeks, besides stumbling to the er and numerous doctors. I started on magnesium as well as used it topically and took Epsom salt baths. I drank protein shakes and ate really clean. I don’t know if any of this had to do with anything – but the reaction was short lived. It cleared up in a few weeks. Burning in my knees was the last to go. I have slowly resumed normal activity and haven’t had any further issues.

    My heart goes out to all of you who are suffering.

  6. Destruida los Restos January 15, 2015 at 7:38 pm Reply

    Hallo all, just to remind you – look at my ¡Destruida! blog – I know I should update it, but look at the misery, the videos of me howling, the nightmare of it all – five years to recover, re-poisoned by soup – now I can walk, run, jump, dance, laugh, sleep and remember things and I have literally almost NO pain. No, I’m not what I was or what I might have been, but that’d be the same if I’d had any nasty modern illness, or any nasty old-fashioned one, so I’m not about to complain.
    A lot ofthe time, i’m happy and have FUN!
    I just saw Lori’s post and thought I’d offer some cheer. Honestly, I never even thought thought I’d survive until last year, but here Iam.
    I was fortunate in that I was taken to a healer – they’re still usual and accepted in much of continental Europe, but I think in the U S A and UK they were all burnt as witches or sprayed with healercide.
    If you can, try to think about other things. I know it’s difficult, but it does help. Also, try to be doing something to help others – people, cats, rainforests, whatever – and something new for yourself – something you learn or do, not buy – so that the time isn’t entirely wasted and miserable.

    • Debs January 16, 2015 at 4:28 am Reply

      Hi Destruida,

      I take an approach very similar to you in regards to my life, & found a very long time ago that to try to distract yourself as far as humanely possible from our predicament any way you can is extremely useful, in fact one of the most helpful things to try to do is to try to get involved with a cause / to get involved with those less fortunate, with animal charities saving nature etc, in learning new things, in fact whatever your personal interests are .
      It is of course NOT easy, in fact can it be difficult in the extreme, & at times, especially when you are going through the acute hell of this poisoning of your whole self body & soul it often feels seemingly impossible to do. I feel I have been fortunate in that I KNOW how difficult this can be to achieve, having been stuck in neuropsychiatric hell on earth for so long where everything was stripped away from me both physically & psychologically, my world ended up becoming VERY small indeed. Having experienced this however, I ALSO know It CAN be done, & no matter how much physical pain you are in , no matter how cognitively damaged you are, there is always a way to adapt your life so it still has great meaning for YOU, there is ALWAYS a way, it is a matter of finding it.

      Personally I feel the things which helped me were firstly to stop fighting myself, trying to get back to exactly the same situation I was in before this occurred, we ARE changed people , & I mean this in every respect , the sheer shock of finding out what has happened, that Drs, those supposedly highly trained people we have been taught since birth who have taken a oath to first do no harm, who are there to help us ,heal us when we are unwell, those we entrusted with our lives, when we find out they have instead poisoned us & made us extremely sick, & when we find out what is going on behind the scenes, the reasons for this, well it changes our outlook on life, it literally rocks our world to its very foundations , we can NEVER be the same in this respect, & this realisation I found was in many ways actually a positive thing for me. To find out just what humanity is capable of, & realise how FAR I was personally removed AS a person from this evil, & to decide to do something no matter how small about it for example via advocacy, I feel It has in fact made me a much better person.

      IMO, Adapting to the way things are NOW is a major key that opens the door of the floxing prison, to live in the moment. I found practising mindfulness is very useful in this respect. Adapting the things important to me I used to be able to do ,but no longer am able to, was also very helpful. Sometimes this means scaling things down for instance. OK so I can no longer landscape my garden, do the heavy work BUT dammit, ! I can still plant seeds. I still have a garden, only in pots of flowers & veg, & My actual garden is mostly full of self seeding flowers which mostly looks after itself.
      I am an avid nature lover , I used to be able to go out birdwatching , I now have feeders in my garden & watch them this way. noticing & taking in the ‘ little things’ & when possible getting out into nature is something which helps a lot.

      I am soon getting 2 new kittens. I strongly feel having something to nurture, which relies on you & gives you a reason to keep fighting, also loves you unconditionally is SO very important, & conducive to healing.

      One of my major passions in life is learning new things. I used to attend evening classes , at present I am unable to do this , so I decided to look into studying online instead, I actually found somewhere you can study online for free, there are so many various different subjects you can study here, if this is your sort of thing. I am starting a course in animal welfare soon, if anyone else here is interested in this also, here is the link .

      https://www.coursera.org

      in the UK there is a befriending scheme set up, & I am looking into am looking into becoming a phone friend ( best description ) via phone for people who are lonely / housebound, who maybe talk to nobody for days on end. I decided this would also help me. I am going to do my very best to try to ‘ become a rainbow in someone else’s cloud ‘.

      At the end of the day, imo, peace & acceptance is often achieved by training our minds to process life as it IS now, not as how we think it SHOULD be, thinking logically we cannot live in any other moment BUT now , as yesterday is gone, & tomorrow of course is not yet here or promised.

      Sending many healing (( hugs )) to one & all.

    • Lisa Wright January 17, 2015 at 4:34 pm Reply

      Destruida, where is your blog posted?

      • Destruida los Restos January 17, 2015 at 6:02 pm Reply

        http://destruida-los-restos.blogspot.com.es/ It’s a mess and a muddle, but you can see what happened to me and hear hours of my howling and sobbing! I cried rivers for four years and streams for another. I really did have a very nasty time. Now I’m rather a jolly lady, always busy, and love my life! “You never most always sometimes know,” as Almanzo would say. :)
        I do encourage newcomers to read the comments here right back from the beginning – there’s lots of useful info.

    • lori January 19, 2015 at 2:28 am Reply

      Thank you for sharing your comments. I am normally a positive person. You help give others hope thank you Lori

  7. b January 15, 2015 at 9:29 pm Reply

    MrgprX2
    Hi guys, Anyone tested MrgprX2 (DNA test) and how is it ?
    Thanks for sharing

  8. todd January 17, 2015 at 9:38 am Reply

    I have a friend who has flox. I recently visited with her and heard her story. At least some of it, and I am shocked at the shear magnitude of debilitation it causes in a persons life who has become afflicted by it. The pain is I ncomprehensible but I know my friend and knkw it is no exageration. That people treat someone with floxie that way appalls me. I am here to learn more so maybe I can be of some help to my friend. My heart goes out to all of you who suffer and Im truly amazed by the strength you must have to push on. That in itself is inspiring to me. Thank you.

  9. aly January 17, 2015 at 6:49 pm Reply

    I was given I think 2 of these listed antibiotics a few yrs back, and since have had neuropathic pain I call “invisible itching”, and strange eczema type skin situations with no link to stress, weather fluctuations, etc. I eat organic and don’t even take advil. I knew the antibiotics were the root of the issues I now have. I suppress them holistically. …they tried to feed me prednisone. Livid. Thank you for information.

    • Destruida los Restos January 18, 2015 at 12:05 am Reply

      I think you may have shingles. The herpes zoster virus lives in the nerve tissue, the nerves are damaged by quinolones, your immune system is weakened – result: shingles. That’s what the “excema” eruptions are. If there’s a good healer (a person, I mean, who helas shinghles) in your area, that’s what you need. It was when my shinghles erupted, but had been agony for ages without a rash, that I went to the healer who also released a lot of the FQ effects and made them run out of me just as they’d ru n in.

    • Jen January 18, 2015 at 9:52 am Reply

      Aly, may I ask what kind of holistic methods worked for you? For the itching? Thank you.

      • Destruida los Restos January 18, 2015 at 12:46 pm Reply

        Well, a homeopathic potency of hypericum helps with most nerve pain and some tingling and there are other remedies that help with itching and tingling, burning and stinging – depending on just how it feels and on the person – but it was the healer who did it.I’m talking about the old-fashioned healers, who used to be burnt as witches or wizards! They just have this goft, whch is innate, and then are usually given a “secvret” that’s passed on fro’m a grand-parent or other relative. I bet you do have them in your country, but I don’t know how you’d find one and abvoid phoneys. I’m pretty sure you have shingles, though and you need to try to cure it as soon as possible and without pharma-meds, or it’ll get worse. Search online for natural remedies and homeopathic ones and I’ll have a think when I get time, but if you can find a shingles-healer, that’s what you really need. In France ans¡d Spain, Italy and many other countires, it’s perfectly normal to go to a healer for certain things -doctors will recommend t6hem and in francve they can be state-registered, yet in the U.ko. and probably in the USA, they’re persecuted or prosecuted!

        • Jen January 19, 2015 at 1:18 pm

          Are there any herbs/supplements good for the itching, tingling, burning and stinging? Visually everything looks normal.

        • Destruida los Restos January 21, 2015 at 12:01 am

          Yes, try hypericum 30c. It’s a homeopathic remedy. Also cautsicum or cantharis or apis mel might help – read more about them and ab o u t homeopathy. http://desti-homeopathy.blogspot.com.es/ There’s lots on line.
          I think the reason so many ofyou are obssessed by the idea of supplements is that they’re advertised on television and everywhere. I can’t see why else. In the USA you have advertising of pharmameds and of supplements. It’s going taht way in Europe, but sn’t as bad yet.

      • Daniela January 19, 2015 at 7:24 pm Reply

        if it is the infection I think it is, there is a supplement, lysine. and there is an exercise because the chicken pox/herpes infection rests in the coccyx (the bottom of the spine). That exercise is salabhasana, or locust pose. Lie on your stomach, head tucked, push the body forward with the toes, release the toes, then lift both legs just a tiny bit (from the hips, not bending the knees.) Just enough to feel it a bit in the lower back. The goal is probably to bring blood flow into the coccyx and heal that infection.

        Hope it helps!

        • Jen January 19, 2015 at 10:40 pm

          Daniela, I don’t think it’s an infection. I think it may have to do with PN symptoms.

        • Destruida los Restos January 21, 2015 at 12:05 am

          That’s interestng, because hypericum also acts on the coccyx and a lot of people who need hypericum for some reason turn o ut also to have damaged their coccyx at some point. Homeopathy really is holistic and wonderful.

        • Destruida los Restos January 21, 2015 at 1:24 am

          I think Aly (above) has shingles, yes, but hyoericum etc. should help jen, as it’s for nerve damage. Hypericum is one of my favourite remedies.

          I had the tingling an ditching for ages before it turned into shingles.

          There are homeopathic shingles remedies, a combination of hypericum, herpes zoster and I’ve forgottebn the other. They may work well, but I was cured by the healer so didn’t try them.

          Aly, if you have shingles, as I’m sure you have, you should try to find the best non-pharma treatments, as it’ll probably get worse and can last for ages before eventually passing. t can be really foul and it does increase depression.

          I looked online, but all your American helaers are Christian prayer-group things and that’s not what I mean. The healers in the US will be in the “ethnic communities,” as they’re called, although you might find one by asking in alternative health shops and so on.

    • Debs January 20, 2015 at 1:59 am Reply

      Hi Aly,/Jen

      I have had SO many weird skin issues over the course of my floxings I in fact have a whole file of photos of strange rashes & bizarre sores etc. The itching / burning/ stinging all over often is also a very common symptom of FQ toxicity often as part of the neuropathic picture, I have had the lot. They tried to misdiagnose me with Eczema, I refused to accept this diagnosis, as I do many others they try to pin on me. These skin issues in respect of the rashes lesions have virtually cleared up now, the torturous itching i still get although now though nowhere near as bad as it was, not 24/7 as it used to be.

    • Destruida los Restos January 21, 2015 at 1:51 am Reply

      Aly, am looking at hom rems for shingles, but tell me if you’re not interested.
      Have also found someone who sounds like a good homeopath in USA – they’re there, but you have to look for them.

    • Destruida los Restos January 24, 2015 at 9:54 am Reply

      Varicella is the other remedyhy for shingles; you could take the ASinsworths combination or use hypericum, varicella and possibly calendula.

  10. Destruida los Restos January 18, 2015 at 12:07 am Reply

    If no healer, use natural shingles remedies, but I have no experience of them, so can’t make recommendations.

  11. SM January 18, 2015 at 9:13 am Reply

    For a while now, I’ve been trying to figure out my foot pain. I have some nerve stuff- light tingling here and there- mostly in my left foot. So I know that’s a nerve issue. But i also have bottom of foot pain that starts out minor and worsens as the day goes on. The more I’m on them the worse it becomes. It’s an ache and pain like they’re bruised. A deep pain.

    My neuro doesn’t believe it is nerve related as it doesn’t sound like typical descriptions of nerve pain. I have also not been able to find any site that states that neuropathy is far worse while standing and walking. It’s usally the opposite- that nerve pain worsens at night and while at rest in bed. The biggest confusion is that my right foot, which often had zero-mild tingling sensations is usually worse in terms of pain while standing.

    The podiatrist thinks plantar fasciitis but I’m not convinced. My PT doesn’t think so and I think PF is a catch-all diagnosis for foot pain. I’ve been stretch and doing things like it is PF for a couple months now but nothing has changed. I’d even say that while many symptoms have improved over my 18 month floxing, this one has worsened.

    Can anyone else relate? Any thoughts?

    Thank you.

    • Jen January 18, 2015 at 10:08 am Reply

      SM, where exactly is the pain? I’m trying to see if I had/have the same thing as you. Mine were in the arches mostly.

      • SM January 18, 2015 at 11:43 am Reply

        Jen,
        My heels are tender as the day goes on. But my arches are sore too.

        • Jen January 18, 2015 at 3:24 pm

          SM, I don’t know if the same things that helped me will help you but here is my run down on my condition. The pain in the arches of my feet were the first symptoms for me. It was so bad the first 6 wks that I was homebound and bedbound. I also had ankle pain. The podiatrist said I had acquired fallen arches due to posterior tibial tendonitis. Another ortho dr said it was more inflammatory in nature. Hence, I’ve had physical therapy where they gave me manual therapy to loosen up the tightness and gave me exercises to do for stretching/strengthening. I had 6 wks of therapy and it did help. Prior to therapy I was limping mainly on my left foot but now I can walk normal with heal-toe motion. I do have soreness towards the end of the day and if I’ve been on my feet for long but it’s definitely better. The other thing that helped for me were shoe inserts recommended by the podiatrist. I also have PN and haven’t really found any help for it yet. They have improved a lot but still linger. I’ve started taking ALA and will also include benfotiamine which are supposed to help with PN.

    • Destruida los Restos January 18, 2015 at 12:49 pm Reply

      It’s probably plantar fasciosis, not fascitis, and tendonosis in the tendons that run along the top to your toes – all connective tissue is affected, but as no inflammation, it’s not -itis.

      • SM January 18, 2015 at 2:03 pm Reply

        Thanks, Destruida. I used the general term for PF even though I am aware and agree that it is not inflammatory in nature.

      • lori January 19, 2015 at 2:44 am Reply

        my feet and legs swell up immensely. sometimes to the point they will split open on the bottoms of my toes. it hurts to take a step feels like getting shocked. constantly tingling, numbness and achy really really bad.. the bottoms of my feet are always red hot to the touch and bright red.no matter what i do the swelling is always there. the backs of my ankles all the way up the back of my legs is always so tight and feels like it is ripping my muscles apart or something. all the biopsy showed is differential diagnosis connective tissue disease or hypothyroidism. and ulticarial vasculitis ? all xrays are good and show nothing. and all the tests the dermatologist have done are all good too. at first she thought i had diseased veins and the blood was pooling at the bottoms of my feet, but later we found they are all good.
        Not sure if this problem is connected with all my other symptoms. having an MRI soon on my feet.
        I seriously cannot go to the grocery store anymore. It is too far for me to walk. If i cant get it at 7-11 or Maverick where i can park right close to the door then i dont get it.
        I soak my feet a couple times a week in a foot bath with epsom salt. Not sure if it helps or not but it feels better for a couple hours when i get done.

        • Destruida los Restos January 21, 2015 at 4:09 pm

          I think soaking your feet alternately in very hot water, with Epsom salts or I used comfrey root, then in very cold water, wth ice, is helpful – worth trying, anyway.

    • Patty Alexander Sr. January 18, 2015 at 3:09 pm Reply

      I started out later on with RLS but that is nothing compared to the other stuff going on with my feet so Those things are in my past that I don’t even think about anymore. Thinking about when I would read up on that condition way back though, one article mentioned that RLS could be an iron deficiency and the doctor at the time did tell me to take an iron supplement and I did but it didn’t help any. She wouldnt tell me a dose to take and you have to be carefull in taking iron. This is at a time before the major pains in my feet ever started, so that may give someone a clue of what to watch out for.

    • Carrie January 20, 2015 at 12:49 pm Reply

      SM, the pads of my feet are very painful…. the area from the arch forward to where you toes connect… is that what you are referring to? I feel like the pads of my feet are no longer there… it is a horrible pain sometimes when walking in shoes – just about every pair I have – and it gets worse throughout the day for me. I have been told that it is due to the loss of collagen and how FQ’s mess up the connective tissues in our bodies. I am about 14 months out and hope to see improvement in the coming months… I PRAY that this gets better for me along with all the other horrible symptoms…

  12. Debs January 18, 2015 at 2:40 pm Reply

    I had this pain myself my feel felt as If I had stood on by a horse. My arches have dropped also, connective tissues are softened & weakened all over the body. so it is of no surprise to me this occurs.

    • Patty Alexander Sr. January 18, 2015 at 2:44 pm Reply

      My arches have not fallen but mine definitely is inflamation related, that’s why for me, I for the most part try to stay away from inflamatory foods, along with taking the serrapeptase. At least I am not a total cripple this way and I can deal with it.

    • SM January 18, 2015 at 3:17 pm Reply

      Debs,
      My arches certainly haven’t fallen. My feet can be mildly tender to massage, but the pain is a much deeper pain that occurs over time on my feet. Did this improve for you? Are there recommended protocols?

      • Jen January 18, 2015 at 3:29 pm Reply

        SM, I have to tell you the manual therapies were very painful! I was afraid that it may do more harm than good. But surprisingly for me it helped. By the end of my 6wk therapy the manual therapy wasn’t as painful as in the beginning. I used to clench my teeth in pain in the beginning but towards the end I would actually look forward to it.

        • SM January 18, 2015 at 3:51 pm

          Jen,
          Like physical therapy? I have just started therapies- ASTYM, Active Release.

  13. Patty Alexander Sr. January 18, 2015 at 2:52 pm Reply

    Jen, my foot pain is basically in the middle of my feet, say if you wrapped a sock around your foot starting at the arch and wrap it all aroiund the arch of your foot. The meaty muscle part there. I don’t have any problems with heel pain or down lower by my toes, other trhan an occasional stabbing pain in my heel lately, but that doesnt make it painfull to stand. I do get nerve pain at times in different parts of my feet, but that’s another story.
    The Serrapeptase I take helps a great deal with this kind of pain, and also with the nerve pain.

    • SM January 18, 2015 at 3:04 pm Reply

      Thanks, Debs and Patty. That’s good insight, Patty. I think I’ll give the anti-inflammatory diet a shot. I’d do anything. Fruits, veggies, whole grains, beans, nuts, oils, salmon? You avoid meat and poultry and processed foods? Is that the idea?

    • Jen January 18, 2015 at 3:31 pm Reply

      Patty, could you explain the nerve pain you get in your feet? It’s a bit difficult for me to know whether what I’m feeling is nerve pain or not. How much of the serrapeptase do you take and which brand if you don’t mind me asking?

  14. Debs January 18, 2015 at 3:38 pm Reply

    Mine is at present a deep throbbing ache underneath the feet in the middle, the bruised feeling has gone now. my arches only dropped after my most severe last floxing with Cipro & an NSAID. now I can no longer stand for any length of time. The neuropathic pain I still get on & off stabbing / stinging but this is much improved. treatment for this is really trial & error I feel personally. Different things seem to work for different people we are all unique in our reactions. I do strongly feel time is the one major thing which will show how much we have been injured & how much we will improve.

    • Destruida los Restos January 18, 2015 at 6:37 pm Reply

      I take ruta graveolens 30c for my feet – sorts them out in minutes -or if you have inflammation try rhus tox 30c.

      • marianne (@vogelfan1) January 20, 2015 at 7:40 am Reply

        Hi; does rita graveolens help for the neuropathy (tingling)?

        • Destruida los Restos January 24, 2015 at 10:00 am

          No, for that you need hypericum 30C (or the equivalent potency, ‘cos in America yu use dfferent numbers, but it0’s the same thing.) Also, for tingling, apis mel or urtica might help (apis is from bee stings, urtica fromn nettles) but hypericum is THE number one remedy for all nerve damage. Read through all the previous comments and you’ll find I’ve written plenty about these remedies.
          Ruta is for the ache in my tendons and fascia. If there’s inflammation, rhus tox may be better, but I find ruta is perfect.

  15. Patty Alexander Sr. January 18, 2015 at 3:39 pm Reply

    Sm, it gets really complicated. Salt does me in BIG TIME! So anything with salt for me is a no no.Grains are a no no. and especially whole wheat bread is bad sruff, regardless of how much they promote it as being healthy. f you can cut out all pasta, all breads and goodies, that would be a great start. Dairy affect some people in a bad way. Definitely cut out any vegetable oil and any hydrogenated foods like margarine, crackers of any kind and anything processed because they are loaded with trans fats and other additives that are not good in this situation. Did you know that if a product is less that, (I think 5 percent )trans fat, they are allowed to label it as 0 trans fat? So if you eat a lot of margarine thinking it is 0 trans fat, you are getting alot of bad stuff there. and you think you are eating healthy.
    You might want to stay away from the night shade veggies. (all the squash family, tomatoes, peppers) they can be inflammatory
    It would be easier to list what is good to eat.
    Olive oil, Coaconut oil, nuts, (no peanuts), walnuts, almonds, are all good. Salmon is an excellent choice but I just dont care for it so I take fish oil in it’s place. Leafy greens are an excellent choice (with olive oil, no store bought dressings) Cucumbrers are great, , celery is great and any green veggies.also cabbage, brocolli, brussel sprouts are all good.carrots, etc. Rice in modereation, is what I was told.
    Be carefull with fruit, especilly the high glycemic kind, and I do eat some Skinless chicken and beef. Orgainc anything is preferred but I havent gone that route yet. Take it slow Sm, Rome wasn’t built overnight. It tales awhile to adjust and Your taste buds will change in time with it.. It atually depends on how much you are hurting as to how fast you will adjust. I wish you well!

  16. Patty Alexander Sr. January 18, 2015 at 3:44 pm Reply

    I forgot to mention that I put curcumin, pepper, ginger on all of my veggie dishes as well as cocoanut oil and olive oil over top of everything that I eat and it makes it really good!

    • SM January 18, 2015 at 3:58 pm Reply

      Thanks, Patty. I appreciate all the feedback. I have a pretty healthy diet already- haven’t had non organic meat or dairy or eggs in 18 months. But there’s room for improvement. I haven’t found a good that really hurts me which is why my diet hasn’t been severely limited. I watch sugar and don’t eat a lot of processed crap. But I haven’t eaten foods that hit me with symptoms overnight so that I was like, “oh yeah. That bread caused this nerve pain.”

      • Jen January 18, 2015 at 4:47 pm Reply

        SM, yes physical therapy. My sessions consisted of various exercises and a manual therapy from the physical therapist. I’m not familiar with the ASTYM, Active Release. Mine was just regular physical therapy.

        • Debs January 20, 2015 at 1:48 am

          Hi all,

          Just a quick heads up here for anyone thinking of looking into physical therapy to treat the tendon issues we get . Please make sure that any therapy you get is geared towards tendonOSIS ( degenerative ) & NOT temdonITIS, ( Inflammatory ), & that the therapist is made fully aware of the fact, that we on the whole have the former & NOT the latter, ( although both can of course coexist, & we can have slight inflammation in respect of tendonosis ( more often at first ). I say this because PT for TendonOSIS is completely different, & many floxies have suffered further injuries to these tissues & set themselves back with healing, because the therapist was not made aware of this fact. If they refuse to adapt the therapy , my suggestion would be to look elsewhere.

  17. Patty Alexander Sr. January 18, 2015 at 5:47 pm Reply

    I am trying to find Lisa Bloomquists reply to answer her earlier question, But Jenn basically asked similar questions so I’ll answer here. I’m fairly new here and I dont know my way around so please be patient if I dont answer you right off. I also get overwhelmed sometimes after reading and I just have to stop.
    Jen, the nerve pain that I get in my feet sometimes feels as though a mouse grasps onto, (bites onto) the end of my toenail, (when I am laying in my bed) and it feels like a weight feeling like that just hanging there. Other sensations I feel a burning feeling in my feet, sometimes it feels like a burning pain trying to push through to the bone, I get it in my legs too at times. I get a lot of muscle spasms at times, too. I think I need to up my magnesium by a lot because I thought it was 500 mg per tablet that I was taking and it was only 100 mg per tablet. Recently I take 4 tablets of magnesium a day but I will be upping it to more). Nerve pain can be a lot of different weird sensations. My balance gets bad sometimes because something is weird about the bottom of my feet, (at times), like I don’t get the normal sensations as if you were to step out your front door, I get very anxious just stepping out to one step because I don’t have the normal feeling there in my feet that we all take for granted (if we didnt have this problem). Sometimes I have fallen because (on my kitchen floor) because my feet felt like they slid across the floor (both feet together)when they did not. Is that weird, or what? When I last fell, in August of last year I felt like every nerve in my body was wripped from where ever it was attached to, when I hit the floor. That is what I am still recovering from now. So now I have different feelings and anxieties to get used to.
    When I was still working, (almost five years ago), I would get severe tingling in my feet while at work to the point that when I sat down for my break time I’d be sitting there twirling both feet trying to get that feeling to go away. It never ceased. Years before that probably when this all started for me, probablly around 2004, I’d be walking around doing my job and I’d get stabbing pains in my feet.(with no warning). Just a stabbing pain out of no where. This is also the year that my knees started swelling and becomming very painful…and around this time also, I became so exhausted and started sitting down alot, something I never did on the job. I was diagnosed as hyperthryoid shortly after that., and years after that, adrenal fatigue.

  18. Patty Alexander Sr. January 18, 2015 at 6:12 pm Reply

    Jenn, I got a little off topic. The brand of Serrapeptase that I read up on first and bought was through Sandra Cabot,MD, or Liverdoctor.com. Two capsules of these are 250,000 IU of Serrapeptase. I innitially started at one capsule but I am a big person so I take 2 and that seems to help.
    The other kind I buy is from Robert Renfern. He is from the UK. His product is called Serra enzyme, and I take ONE of them in place of 2 the other kind because his product is as strong with one capsule as the Liverdoctors kind needs two of. I hope I didnt confuse with that.
    I read throughly on both of these sights before I ordered. Sandra Cabot calls Serrapeptase: a miracle pill, and it certainly has been, to me. My hubby can attest to that
    On other posts, I may have said the Serrapeptase is 240,000 IU, I have the bottle here and it is 250,000IU.
    Jen, the Serrapeptase knocks out the nerve pain, for me,(in my legs and feet) and makes them feel, (almost normal) but I still have to be carefull with my footing. I have issues with my arms too but I dont mention it because it’s nothing, compared to my legs and feet. Another thing that I fotget to mention, is that I sleep as much as I have to, in order to feel less pain. If I get up and I still hurt,(my legs) or they feel weird, I go back to bed for a couple hours more. I answer to no one anymore and it has to be like that in order for me to survive this ordeal and possibly regain my health. We all need a miracle to get through this!

    • SM January 18, 2015 at 6:22 pm Reply

      Patty- Thanks for all your information. I bought some Serrapeptase and I think I’ll give it a shot. It sounds like you’ve been fighting this for a long time and were quite severe at times. This is a tough road we are all on.

    • Jen January 18, 2015 at 7:59 pm Reply

      Thank you Patty. My main problem is the pins/needles feeling and the electric zap like feelings. They also feel like i have to scratch them like when you have extremely dry skin. The other pains come and go.

  19. Patty Alexander Sr. January 18, 2015 at 7:25 pm Reply

    Sm, it is VERY IMportant to make sure that you take Serrapeptase on an EMPTY stomach. The best of luck to you and to everyone here.

  20. Esther Arden January 19, 2015 at 8:54 am Reply

    Has anyone suffered from loss of smell after taking Levaquin/Avelox? I no longer can smell and my sense of taste has diminished.

    • Catherine January 19, 2015 at 9:22 am Reply

      Hi Esther
      I lost my sense of smell and taste for a while after I was floxed, but they are back now.

    • Melanie kemp January 19, 2015 at 11:44 am Reply

      A friend of mine has lost his sense if smell

    • Melanie kemp January 19, 2015 at 5:13 pm Reply

      A friend of mine has lost his sense of smell

    • Debs January 20, 2015 at 1:31 am Reply

      I had a different issue, in my last floxing where my sense of smell & taste changed & in a way actually became more sensitive. I found many things I used to like I could not longer stand.it seems to have sorted itself out now.

      • tricia January 20, 2015 at 8:35 pm Reply

        For anyone who has been floxed for a year or more, do symptoms get worse over time? I’m almost 3 months out , have leg pain and neuropathy that comes and goes, eye floaters, and fatigued…although my debilitating fatigue I used to have improved slightly. I can still work and do all the things I did before( except exercise) I have pain that comes and goes, some brain fog and feel very depressed and hopeless just from reading blogs of the continuous pain and suffering that so many seem to have. I hope we can all recover soon!

        • Melanie kemp January 20, 2015 at 8:53 pm

          It gets better Tricia
          3 months in i was pretty horrible. 6 months was the turning point

        • Destruida los Restos January 21, 2015 at 1:55 am

          Mine got worse and worse most of the time for four years – then I recovered and am very well for my age and very happy. It was animals that saved me – every time i was about to top myself, along came an abandoned, hurt, starving animal that I had to help and they saved me as much as or more than I saved them. Much nicer than people.

        • Destruida los Restos January 21, 2015 at 1:57 am

          Animals and the healer and homeopathy, all three. And destiny, probably – que sera, sera.

        • Destruida los Restos January 21, 2015 at 1:58 am

          Three months is nothing!

        • Debs January 21, 2015 at 2:51 am

          Hi Tricia,

          As someone who has been in this world quite a while having been floxed multiple times I can say that a common pattern & one which seems to occur quite often ( although by NO means universal, as our floxings are completely unique to each & every one of us ) is that more & more symptoms can tend to crop up over varying amounts of time, & this timeline can vary a LOT ( some symptoms in fact can often be delayed for many months, this is one of the hallmarks of these horrendous drugs ). Then people often find new symptoms will stop appearing, we then can jog along the bottom at the same level again for varying amounts of time before turning the corner & then beginning to SLOWLY improve. We then often ( but not always ) enter a period of cycling of symptoms / various groups of symptoms. These cycles at first can be quite severe , then as time passes they tend to become less nasty, & the gaps between these cycles tend to get longer , for me it tended to be around an average of 18 months from being floxed until I noticed I had no more new symptoms cropping up on average with my various floxings

          At 3 months you are VERY early into your floxing, & it is possible that you might get worse before you begin to get better, although of course on the other hand you may be lucky & you may not do so, nobody knows unfortunately & this is one of the most difficult things about floxing One of the hardest things to get our heads around, As we are used to on the whole with feeling unwell getting ill, then recovering quite quickly. Floxing is NOT in any way shape or form like your usual everyday illness, we have literally been poisoned
          This CAN be a long term situation, & in fact adjusting our thinking to accept this possibility can be very helpful in fact although not at all easy to do.

          Many people will get to a place where they will feel recovered , even more WILL EVENTUALLY reach a place where this does not consume their every waking moment & this becomes just another bad experience a bad memory & recover enough to be able to get on with their everyday lives, albeit maybe with some limitations ( often related to exertion / exercise ) due to the damage, a FAR fewer number of people unfortunately do end up with ongoing issues. for example I have been left with chronic kidney disease ( but that is not surprising, due to the amount of times I have been floxed & how much poison I have unfortunately ingested )

          I improved substantially eventually in many ways with each of my floxings & even though I have been floxed 7 times. & also been force-fed 12 years of psychotropic poisons ON TOP of this, for a FQ induced misdiagnosed condition, with my last floxing I have STILL done the same. IMO If I can still greatly improve after all this, I truly believe this there is great hope for us all !.

        • Melanie kemp January 21, 2015 at 8:58 am

          Thanks debs. Love youre post.
          what’s youre thoughts on relspses.
          I relapsed after recovering pretty much 99%. Had 3.5 great years. Relapsed because of working out. Its been horrendous. Worse than my floxing.Very slowly seeing improvement (9months in now). Doesnt feel like improvement but i know i am.because im no longer bed ridden and im getting out a little.
          Still feel really bad though

        • Daniela January 21, 2015 at 10:49 am

          Three months is a short time BUT most of us had no idea what was going on and some of us were being given other medications or told it was something else and treating the wrong thing, etc.

          If you feel you have identified the problem, and you find and follow the appropriate suggestions from people who have gone through it, you’re probaby going to be okay much much faster than expected :)

  21. Esther January 19, 2015 at 10:10 am Reply

    Thanks Catherine for responding; then there may be hope for me.

  22. Patty Alexander Sr. January 19, 2015 at 12:23 pm Reply

    Sm, good luck with the serrapeptase! I hope it works as well for you and for anyone who gives it a shot. I am far from out of the woods yet but the Serrapeptase was the answer to my prayers.

  23. CP January 21, 2015 at 11:14 am Reply

    I still believe that Fluoroquinolone toxicity has two components: an initial direct toxicity and a prolonged immunological phase—I do not believe in lingering metabolites, DNA change, and so forth. There is no other way to explain the cycles besides immunology—every patient that has received an immunossupressant like prednisone has noticed improvement while taking it, although, the symptoms recur once it is discontinued; to me that seems like a process for containing the damage, and the steroid therapy duration should be longer than we have anticipated. Having said that, it appears that we are underutilizing immunosuppressants to limit the damage to our bodies. While steroids may pose a danger in patients who have used it chronically prior to being floxed, I believe for acute cases, suppression, and exacerbations, it might be the right thing to do to limit our sufferings. Steroid therapy and other immunossupressants can’t be for a few days or a few weeks, the therapy must be for months if not a few years. Again, most people seem to respond very well to steroids, but have a recurrence as soon as it is stopped. That in itself indicates an immunological process and response to steroids.

    This would be an excellent study for the research scientists amongst us. We need animal (poor animals) study to look into this. There are animal studies that show the damage, but we now need animal studies to show if immunossupression can help us contain the Fluoroquinolone toxicity. I am surprised that amongst the thousands of people that have been damaged by Fluoroquinolones not a single study has been performed to look into the benefits/lack of benefits of immunossupressants!

    • rene January 21, 2015 at 11:55 am Reply

      Immune suppression as a form of long term treatment for damage to the muscoskeletal system, CNS, PNS, is at best very very dangerous. All Steroids are contraindicated for these injuries as they compromise the connective tissue further, and “suppress” the immune system” which is not on the path to repair, or healing. Suppressing symptoms, “is” the pharmaceutical model of medicine. “That” model perverts the expression of the system as a whole….that is not medicine, that is just more of the same mess.

      Steroids decrease inflammation, while doing what else? Destroying Osteoblasts which build bone. The Hypothalamic/Pituitary/Adenal regulation is decreased. Opening the door to adrenal dependency, blood sugar problems….That does not serve the body that is in need of repair, and healing. Long term use of steroids is very very difficult to taper down and get off of entirely. Hence the safe and risk free options of diet, vitamin C IVs, Glutathione push,…also reduce inflammation.

      • CP January 21, 2015 at 12:51 pm Reply

        We don’t know if the alternatives to immunsuppresion is appropriate. All we know is that if we do nothing we are loosing our tendons, nerves, and multitude of other organs anyways. People are suffering from pain, loss of vision, loss of joints, they are loosing their jobs, they live a miserable life and some have even committed suicide…. We are suffering as it is and the damage is on-going. Why not lessen the damage and torture? Perhaps, not decreasing the intensity of the aberrant immune response is more damaging and torturous then people taking the immunosppressants. Modifying the immune system has helped others with their illnesses and perhaps it may be a partial solution to our new found immune problem. The pharmaceutical method of practicing medicine isn’t entirely incorrect. Taking Vitamin C, IV Gluthothione have absolutely no scientific and objective science behind it, and perhaps many people will be injured by them for no good reason (these therapies have their risks which in no way should be minimized)—plus these therapies parallel the pharmaceutical method. Again the “wait and pray” method may not be the appropriate approach. We need to clarify the various approaches and find the best and least harmful process with an open-mind.

        • Lisa Bloomquist January 21, 2015 at 1:46 pm

          I appreciate your input, CP, but I disagree. I agree that FQ toxicity is likely autoimmune in nature, but I think that we disagree on both what that means and what to do about it. I think that autoimmune diseases come about when cells are damaged – specifically when mitochondria are damaged. Look at the tests for autoimmune diseases – they test antibodies for cellular damage, not immune system functioning. The immune system is reacting to the cellular damage and entering into a vicious cycle of perpetuating damage. I think that the way that you stop that cycle is to repair cells, not suppressing the immune system. I think that suppressing the immune system with pharmaceuticals has huge drawbacks – opening one up to infections (obviously), causing cancer and all of the other side-effects of immunosuppressive drugs. I also disagree that most floxies respond well to steroids. Completely anecdotally, it seems to me that roughly 50% of people respond badly to steroids, 30% respond neither well nor badly and 20% respond well to them. That is my impression, not scientific data – so take it for what it’s worth.

          I think that Dr. Terry Wahls is on the right track. Are you familiar with her story? She put many of her MS symptoms into remission via diet. I think that there are many levels of cellular support that are needed for healing from an autoimmune disease and/or FQ toxicity, but that her diet is a good place to start. It seems to be helping many people.

        • Kel January 21, 2015 at 2:33 pm

          This is placed completely on faith and on little knowledge but on the 6th sense/gut feeling/intuition. We don’t know that FQ Syndrome is not a product of an autoimmune disease or another condition in the genes of those effected. How would anyone know today with the tiny bit of scientific information available to us. My Niece has Cogans and may have been given FQ ear droplets for an ear infection, which in fact that ear is now completely deaf and then subsequently given injections of steroids into that ear. They kept checking her for various Immune System Diseases. I am not sure that the Cogans was known by antibodies or by symptoms by the Immunologists blah blah whatever they say they are, specialists.

          I don’t know where this Vicious illness seeps up from. Though I like so many theories an ideas, time for Medical Funding! Seriously Funded! Only will be done when enough Floxies in the right places push for it. When the Companies feel the financial burden and the public cries and screams. Like 500 or so million to save Redwoods

        • Destruida los Restos January 21, 2015 at 4:59 pm

          I don’t think it’s auto-immune. I can’t see anything about it that indicates that. I think very few conditions are auto-immune. I think it’s another made-up thing to make it somehow the patient’s fault. I think it’s yet another term to use without really analysing what it means.

  24. Kel January 21, 2015 at 2:35 pm Reply

    P.S. Hmm, feeling arthritic in my hands sorry for the poor grammar plus tireeeeeed… This syndrome sucks the life out of it’s patients. We are patients, I think we just want to be treated as such. Validated, understood

    • Daniela January 23, 2015 at 7:25 pm Reply

      It will pass. It may recur, but then it will pass again. I used powdered turmeric on my hands, effective but stains everything. You can eventually wash it out, and if you are like me and it works almost immediately, you won’t care.

      Actually the best thing for my hands were the exercises, yoga for hands. It looks scary but it works right away. I posted the link to the youtube video a few pages ago.

  25. CP January 21, 2015 at 2:52 pm Reply

    I agree that there are is a basic abnormality that develops in immune diseases, and not all are due to DNA injuries. There are many methods and causes for immune diseases. Some can be due to certain proteins we exhibit and some can be due to DNA damage like Lupus, . However, the point is that no matter how the immune system is being triggered, it is clear that damage does occur. While we may not be able correct the underlying cause for the abnormal immune response, we can certainly contain the immune response. At this moment and time, we have no idea how Fluoroquinolones have triggered our immune system, so we can’t go and fix the problem, but what we can do is to limit the intensity of the response. In all immune diseases, it is the response that causes the damage.Meanwhile, if one modifies ones diet and so forth no harm is done, but it may not be sufficient to change the injury that has occurred; perhaps, the injury is permanent and we won’t be able to fix it anytime soon, and perhaps modifying the abnormal response, which we can control, is a viable option.

    We need animal studies to look into what happens when Floxed rats (poor rats :-() are exposed to immunosppressants. As far as your observation is concerned, there are many variables that could explain your observation. For example, those who did poorly or didn’t feel the difference perhaps didn’t receive appropriate amounts of immunosppressants and continued to become worse, or they were exposed to the immunossuppressants before the immune response developed, but they were suffering from the initial direct toxic effects of the FQs. Those who did benefit perhaps had already developed the immune response.

    The bottom line is we need some objective studies to see what is going on, and we shouldn’t completely overlook traditional medicine. Changing diet, eating organic, taking Vit. C, etc. has done me zilch. The only improvement I have noticed is because my body inherently has been working overtime to fix the insult.

    • Lisa Bloomquist January 21, 2015 at 3:06 pm Reply

      It would be wonderful to have some studies devoted to finding answers for victims of fluoroquinolones. The current situation of us trying to put together answers from the smattering of data available, is not acceptable. It’s what we have though. :/

      I have been having some interesting conversations about these two (not related) topics. They may be things that you would want to look into, CP (and others reading this) –

      1. Porphyria. Dr. Rochlitz book has some gems in it – http://www.wellatlast.com/whatsnew.html
      2. Buckminsterfullerene/c60 – several long-time floxies have reported being helped by it. More research needs to be done, of course, but initial responses are positive.

      Regards,
      Lisa

      • CP January 21, 2015 at 3:35 pm Reply

        Thank you for the references. Bucminsterfullerene is basically graphite from your pencil. It is an extremely inert molecule and unlikely to impact our floxed state. I am open-minded, but I also understand chemistry enough to know that this molecule is good for nothing :-). I don’t understand how Porphyria can trigger all our symptoms, or how FQ toxicity can be linked to it. I will investigate.

  26. rich January 22, 2015 at 10:02 am Reply

    looked at your blog destrudia glad your better now

  27. Michael teeter January 22, 2015 at 8:46 pm Reply

    Hello everyone just an update after being to the hospital 4 times they finally admitted me.
    My wife and family thought I was a goner. They think it is chrones. Many doctors here think it related to my flexing. But it seems I am getting better. I was wondering if any others here been through the chrones attack?

    Mike out!

    • Daniela January 23, 2015 at 10:14 am Reply

      I hope they stopped the arthritis medicine. Take care.
      SCD diet is specific to crohn’s, or one of the related problems. It seems to be the same as GAPS.
      I wish I could send you some homemade sauerkraut.

      OH, I really got a bunch better by nothing but broth for 24 hours. It would give your crohns or whatever it is a rest and it’s only a day. IF you are not on meds of course.

  28. rich January 23, 2015 at 6:05 am Reply

    yes dest.. have you written your story yet or you still floating around 90% recovery

    • Destruida los Restos January 23, 2015 at 11:25 pm Reply

      Oh, I wouldn’t expect to recover 100%! That’d be silly and greedy. It hadn’t occurred to me estimate the percentage -I’m just happy that I can get dressed, look afetr myself, go out visiting and enjoy ity, go for quite long, fast walks -why would i ask for more? Look at the first video on this page http://destruida-los-restos.blogspot.com.es/p/fluoroquinolone-toxicity-2-3-years_22.html That was how it was most of the time -I spent a lot of time lying on the floor ‘c oscouldn’t get into the bunk. The fourth year I was mostly in bed n a cold, dark house. The fifth year, I started to liv eagain.
      Yes, I s’pose I should write my recovery story, but as none of you live near a good healer (or if you do, you don’t know it) and none of you will try homeopathy and all of you except a very few are obssessed with taking supplements, preferably with a trade name and in capsules, and as in fact que sera sera, the recovery stories make no difference at all! Most people will continue to recount the deatails of their symptoms, will continue to claim that t’s unfair (not at all unfair – how many puppies, as well as little children in Nigeria, were tortured to death so that we could have these meds) will continue to waste money on taking supplements that are mostly capsule and packet.. ..then they’ll get bored and stop writing online and after a while they’ll recover and move on. The thing I’ve discovered most is the staggering intellectual laziness of modern people – can’t read more than a paragraph, don’t enjoy learning for its own sake, can’t and don’t try to understand anything new or complicated, can’t even be bothered to read through the past comments on this blog! They just expect someone to give them answers on a plate. It’s because of television and youtube and so on – being old and old-fashioned and having had a classical education, I’ve very much enjoyed searching and learning. My favourite thing of all is the spindle muscles in our feet – dear little things and it’s not surprising we fall over when the spidndley nerves are damaged.
      My recovery story would be: I took a quinolone, was very ill, kept getting iller, was unhappy, was homeless, amazingly I met a healer who reversed it, then I used homeopathy to heal some more. That’s my story, but it won’t be yours – we have our own stories, from birth to death. My only other advice is try not to waste the time – use it for learning, for helping others, for doing internet advocacy about things that matter (not just faffyquins) and so on, as Debs and Daniela and I keep saying.

      And NO to whoever claims that it needs more testing on animals to find a cure – if that’s how you think, then in my opinion you wouldn’t deserve to be cured. Laboratory testing on animals is deeply wicked, as well as useless and unecessary. http://www.iaapea.com/

      • Destruida los Restos January 24, 2015 at 7:29 am Reply

        By the way I was as gloomy and hopeless as anyone. Ididn’t expect to recover at all, let alone twice, and was obsessed by the thought of suicide. My lun gsand heartt were very badly affected, both times. I could hardly breathe, waslikesomeone with emphysema – struggle, struggle, wheeze wheeze wheeze, cough cough cough, weep sob weep, day and night, and shocking tachycardia.
        There’s no poin t in saying you won’t get etter because nothing you’ve tried has “worked,” as you haven’t tried using time and patience and, frankly, you have no choice about those!
        I think floxigfcaton must be contagious, as my keyboard is so unwell. For ages, my tyoing was mad, but now I can typoe, only the keyboard’s forgotten how to do it oroiperly!

  29. B January 23, 2015 at 2:26 pm Reply

    I’m interested to know if anyone has had a low Sed rate test result after their reaction? I’ve been tested at 2 mm/hr two times over the last 4 month. It feels like an abnormal finding, but the doc doesn’t seem too concerned.

  30. Peter January 24, 2015 at 2:20 am Reply

    Honestly I’m losing more hope in this fight. I remember when I use to have crystal clear, white eyes, but over the last four months all that has changed. Now my eyes are terribly bloodshot all the time, many black and white floaters, every light seems like staring at the sun, and they always feel strained.

    It’s frustrating that nothing is helping any of my symptoms and every time I think, it can’t get worse than symptom X, I get symptom Y, that’s ten times worse. I just don’t see how you guys stay strong on this and are improving. It’s to the point now that I can no longer drive a car due to oncoming headlights blinding me. It amazes me how I went grin having superior vision to not being able to drive a car in a few months, while so young.

    I appreciate this site and the support, but I’m a realistic person and without any improvement, it’s hard to buy into things improving. 1 year, 7 months and it’s still getting worse.

    • rene January 24, 2015 at 3:12 am Reply

      Peter,
      I know how dreadful this is for you, but do not be convinced that you will remain in declining health. I too had many alarming, and inexplicable changes during my first 2 years. That is no longer ongoing. Being realistic means acknowledging what is occurring, it is not embracing it as a fixed unchanging, never to change or improve, or recover.

      I dont know the specifics of your condition, or what you are doing to care for your condition…I think you should demand to be tested for Vitamin B12 deficiency. Even is you have to stretch the truth to get your doctor to agree to do it! Meaning say that you were told you had pernicious anemia by a doctor years ago…..that will get their attention. You just forgot about it, & want to get thoroughly checked. The point is to insist on it and get it done. Until you are tested properly you don’t know. Not just the regular blood serum….you want the antibody test for intrinsic Factor & methylmalonic acid.

      If you are in the USA you can order your own tests on line. Many of us have underling and unknown B12 deficiencies. Either becuase of, pernicous anemia, MTHFR gene mutation, or diet…..either way if so….that is not something that should be left undiagnosed or assumed that you do not. It is a very common, prevalent issue….but there is no money to made by the Remedy which is oral supplementation with Methycobalamin or Hydroxycobalmin or weekly home injections or both. NOT the Cynocobalamin form which is cheap, and has a cyanide molecule to contend with. The right form of B12 is crucial. Do not take the folic acid in mutl’vitmains is you are low in B12 either. Research this yourself……but do yourself a favor and find out if you are deficient?! If you are, then that will be one of the best things you can do for yourself is to raise your levels. Also the blood srum levels are not an indication of what is in the cells. So, insist on being tested for pernicious anemia. Dont let the doctor talk you out of it. If he or dhe wont then get the online tests!

      • Peter January 24, 2015 at 10:24 am Reply

        Part of my problem is my doctor is a complete idiot to put it nicely. She will not test for anything, ever. No matter how much i demand or push her too. She will never accept medicine did this and even yesterday when i was forced to go to her, she would not test me to verify anything. I avoid doctors now Like the plague. I’ve been sick for a month and a half with who knows what, non stop cough, runny nose, sore throat, etc. T got to the point this last week that i saw white dots in my throat so i went in yesterday thinking strep. Last month when i got sick i was around someone who had strep and work in a classroom…so ya. She would not do a strep test and prescribed Zithromax Z-Pak, which I’m fearful of starting because of levaquin, but also because it’s the same story….here take this medicine for blank, even though i did no tests….a simple x-ray would have prevented levaquin. A strep test could have prevented??? In the end, she told me to take this because i was exposed to someone with strep, Not because she thought i had it.

        This and doctors just worry me to death now…

        • rene January 24, 2015 at 1:05 pm

          I agree, and you are correct to be wary of them. Since this doctor is a failure….than I highly recommend that you find a local Naturopath. They are the most forward thinking, and their approach is non pharmaceutical. If you need help with this, either list which city and state you are in the USA. I am pretty good and finding stuff.

          You do not have to accept, or continue going to this ignorant doctor. Good bye, and keep it moving. Functional medicine Doctors, environmentalist Doctors, Osteopath are the kind of doctor’s that are best suited for the majority of people, whether harmed from these drugs or not.

        • Destruida los Restos January 24, 2015 at 2:38 pm

          Well, you can easily cure such infectons with natural things. It’s hardly even worth listing them, they’re so easy to find online. Start by gargling wth salty water, tghen use natural antibiotics such ass garlic and thyme. There are lots. I drink ginger tea, or ginger and liquorice and leman peel and elder-flower and sometimes marshmallow and marigold and whatever else i feekl like adding, everty day. I never get colds or sore throats, but if someone very heavily inbfected comes and sneezes at me, I take my fierce ren¡medy and that frightens the infection away before it dares to start – crush many cloves of garlic (about nine) and half an onion, using a fork (silver or stainless steel) pour runny honey over them, leave for a few hours at least, or a few days, then take spoonfuls of the honey.

        • Heather January 24, 2015 at 8:43 pm

          Hi Peter, you should definitely stop seeing the doctor you are referring to and find an MD with at least an open mind. I actually see a naturopathic doctor and they will definitely send you for testing. A functional medicine doctor is also something to look into.

    • Debs January 24, 2015 at 4:04 am Reply

      Hi Peter,

      I am also a very realistic person. If you have not yet seen it, please seek out my post above ( 21st January ) on my own view on improvement / potential recovery. This is based on my multiple floxings, over 26 years, as well as my experience of watching others. I have been in this world a very long time. In respect of the visual symptoms, particularly in my last floxing I had horrendous light sensitivity & had to wear sunglasses 24/7 even at night indoors. Apart from my having a bad reaction to an epsom salts bath which has caused this light sensitivity to flare a bit, ( before this they were fine, & this is improving again ), these visual issues I had have now gone completely, that is apart from the floaters & slightly dry eyes, but I have adapted to these.

    • Destruida los Restos January 24, 2015 at 7:18 am Reply

      Have you tried euphrasia? (No.) As for headlights, I and at least two other people I know spent two years staying inside with dark blinds or curtains drwan all day, fortwo years or more, but we recovered,.

    • SM January 24, 2015 at 12:50 pm Reply

      Peter- You and I have the same timeline. I’m also 19 months. I improved in the beginning 6 months, but I feel very flatlined since then. My big symptoms now are PN in my feet and some in my hands. My feet always hurt- cold ache, tingle, or actual pain when I’ve been on them too long.

      Most floxies seem to have ups and downs. I don’t seem to change much at all. I concur with how hard it is to be hopeful. I hear of many people who are improving and healing. I love the stories. They are the only things that give me real hope. But after so long, I have started to really believe that I won’t have that story.

  31. Debs January 24, 2015 at 4:25 am Reply

    Hi Melanie,

    My own views on relapse are of course based on what I personally consider a relapse. a flare & a cycle of our symptoms, all these to me feel different. A relapse to me is when you FEEL completely refloxed, & then I often find I will get flares of various symptoms pop up on top. For me It ALWAYS involves the horrendous bodily weakness becoming enhanced greatly, feeling literally poisoned. This is how I tell the difference personally. These relapses I find are often triggered by trying to do too much, This coming suddenly to a full stop & crashing I believe from this respect it is mitochondrial, oxidative stress also contributing greatly to our issues overall. Flares seem to be triggered by something I cannot tolerate. Cycling involves for me various GROUPS of symptoms occurring together , sometimes this is the neuropathic pain , sometimes it will be the muscoskeletal system playing up etc.

    • Melanie kemp January 24, 2015 at 9:08 am Reply

      Debs.
      did you recover from youre relapses

  32. SM January 24, 2015 at 4:01 pm Reply

    Debs- I appreciate your insights on the recovery process you shared on January 21st. I had read it but reread it just now. It certainly fits with the experiences of many recovered/significantly improving floxies I’ve read about. Like you said, everyone is different. And for me, I feel mine has been odd. I had a very acute reaction the day after taking a 6 day Cipro treatment (my first and only as far as I can tell). Those first 2 months were brutal- insomnia, joint point, muscle pain, nerve pain in my legs and feet so that the sheets hurt and I had to sleep with my feet outside the sheets, stomach pain, tendinitis all over, etc. The typical stuff. But between 2-8 months, things gradually improved. My tendon and joint pain and insomnia became minor to non-existent. The extreme stiffness improved significantly. So, it seemed that I had turned that proverbial corner. Well, since the 8 month mark, and now 19 months overall, I feel very stagnant. My symptoms have settled into nerve issues in my feet along with significant pain when I’m on them (unsure if that’s nerve related or connective tissues or whatever). I also have some nerve pain in my hands and maybe a little wrist tendinitis. I don’t feel it’s changed in the past 10+ months. And even if it has, it certainly hasn’t improved significantly. Like you said, we are all different. 19 months isn’t very long in floxie land, but based on how my body responded initially, I certainly didn’t believe I’d be here at this point. I’m just hoping that the next corner is, well, right around the corner. I need it. I’m sure we all do.

  33. Peter January 25, 2015 at 10:39 am Reply

    It’s good to see other people in the same boat, even though that sounds bad, but it gives me some hope. I plan to find a new doctor this week. I also need to see my ent doctor again to maybe finally fix the nose ulcer I’ve had for over a year, but also now to look at my nose as well. Sadly i must report that my left nostril is collapsing for some reason. It’s very disturbing and further bringing me down and impacting my breathing. It really does seem like i can’t win. I’ve accepted i will need surgery at this point, but maybe he’ll have something else to say. I’m not really sure. This illness just leaves me scratching my head daily and many of my problems i feel a are unfortunately not treatable / can never return me to 100%.

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