Tag Archives: Community

Patience and Kindness

Perhaps it’s because of the winter solstice dark and cold, or because 2019 was a particularly bad year for some people, or because being floxed SUCKS, or because of fear, or because nuance can be difficult to convey via the internet, or because of a million other potential reasons for ill moods, but it seems to me that people have been particularly impatient, rude, and even hateful on the floxie facebook pages and groups–including the floxie hope page and the fluoroquinolone wall of pain page, both of which I manage. I’m pretty decent at ignoring unpleasant things and avoiding confrontation, but the comments that are mean-spirited are starting to bother me. Perhaps in recognition of the holiday spirit or the change of the year (and decade), I would like to make a request – can y’all please be nice?

No one knows the perfect way to go through fluoroquinolone toxicity. No one knows the correct way to cure this. Everyone is experimenting and trying their best. Some people try things that they hope will be helpful or curative that have hurt others. The people who try these things are not stupid or trying to rub an adverse reaction in anyone else’s face. Sometimes knowledge of best practices shifts and what someone tried years ago is now known to hurt floxies. It stinks, but it happens. There’s no need to belittle people for what they tried years ago – or what they tried yesterday. People are doing their best to heal with the information they have. Feel free to give more information, but I would like to ask people to please be thoughtful when “correcting” others.

A common criticism on the floxie hope facebook page is that posts are old. Yup – some of them are. This site has been around for 6.5 years – since June, 2013. I put older posts up on the floxie hope facebook page because I figure that some people will still get value out of the posts. I sincerely hope that they are helpful, hopeful, or otherwise valuable to some of the people who see them. I also don’t think that 6 years is that long, or that a 6-year-old post is less valuable than a 6-hour-old post. However, if some of the information is out-dated or incorrect, I apologize. I did the best I could at the time I wrote each post, and I’m still doing my best now. I try to post accurate and backed-up information, but sometimes I’m wrong about an assertion. It happens. I’m a blogger. This site is my blog, not a peer-reviewed journal. I have always tried my best to be correct, but I don’t have the resources to verify any of my assertions about the causes or effects of fluoroquinolone, so please take everything I write with that grain of salt.

I also put up old posts because, frankly, I’ve gotten tired of doing fluoroquinolone research, putting together pieces of information from various sources, and formulating thoughtful and informative posts. I don’t have the emotional or intellectual energy to do that like I used to. I apologize. I wish I still had that energy and passion. But, to be honest, it has waned. I miss the passion that I once had, and I feel like the posts I have written in the last year-ish are not particularly inspired (or interesting). I would LOVE to have thought-provoking, interesting, inspired, passionate posts on this site, and I invite anyone who is interested in putting a post on floxiehope.com to send me what they’d like to post. This site has a decent-sized audience and it’s a good way to say what you want to say about fluoroquiolone toxicity to the community. Please let me know if you’re interested in writing for floxiehope.com (through either clicking THIS LINK or on the pic below).

One more thing that is a bit tangential – Facebook is cracking down on a lot of sites and groups, and I hope that the fluoroquinolone toxicity community on Facebook doesn’t get hurt by the crackdowns. I don’t think I’m breaking any FB rules, but even without thinking I’m breaking any rules, I’m still having some issues. This notice is currently on the fluoroquinolone wall of pain facebook admin page:

I clicked on the “learn more” link and, as far as I can tell, all rules have been followed. But maybe I did something inadvertently that was against facebook’s rules. Or, maybe they’re wrong. Either way, facebook has a massive amount of power to affect our reach and our ability to spread the word about fluoroquinolone toxicity, and if they shut down the pages and groups related to fluoroquinolone toxicity, well, that will be an awful shame. Facebook has facilitated the growth of this community (as I’m writing this, the Fluoroquinolone Toxicity Group on Facebook has 10,761 members). It has facilitated people sharing information about this illness, recovery, coping, etc. I am grateful to Facebook for all that it has offered. But what it gives, it can take away. I’m slightly worried that a wrong move can result in the disillusion of a major meeting-ground for floxies. I hope that we can continue to use facebook, and it would be a shame if we couldn’t and had to start over on a different platform. If you have a problem with something that is posted on the floxie hope facebook page or the fluoroquinolone wall of pain facebook page, please contact me rather than reporting it to facebook. Maybe then we can stay in their good graces.

*****

The Term “Flox”

When I tell people about this site they often ask me what the terms flox, floxed, and floxie mean. I am not a lexicographer by any stretch, and these are not official definitions, but here are my answers:

Flox (noun): A shorthand term for the multi-symptom, chronic illnesses brought on by fluoroquinolone antibiotics that are referred to as Fluoroquinolone toxicity or Fluoroquinolone Associated Disability (FQAD).

Flox (verb): To be afflicted with fluoroquinolone toxicity or FQAD. The term “flox” is typically used in the past tense as “floxed,” as in, “I was floxed by cipro in 2011.”

Floxie (noun): A person who suffers from fluoroquinolone toxicity or FQAD.

The term “flox” comes from the names of the fluroquinolone antibiotics. All the fluoroquinolones contain “flox” in their names – ciproFLOXacin, levoFLOXacin, moxiFLOXacin, gatiFLOXacin, oFLOXacin, etc. As communities of victims of these drugs formed, people found it easier to say, “I’ve been floxed” or, “I’m a floxie” than to say, “I am going though a multi-symptom illness brought on by fluoroquinolone antibiotics.” Perhaps the term “FQAD” would have been just as easy to say as “flox,” but “flox” preceded “FQAD” by more than a decade and the term has stuck.

The earliest written record of the term “flox” that I can find is in Stephen Fried’s 1998 bestselling book, “Bitter Pills: Inside the Hazardous World of Legal Drugs.” In it, Fried describes his wife’s severe, primarily psychiatric, adverse reaction to ofloxacin, a fluoroquinolone antibiotic. Fried noted that the community of people who had been hurt by this class of drugs referred to themselves as “floxies” and spoke of their condition as being “floxed.” (EDIT/NOTE – Please see Mr. Fried’s comment below for correct information about the early usage of the term “flox.)

Most journal, and even news, articles don’t use the terms “flox” or “floxie.” They typically refer to the constellation of symptoms that “floxies” deal with as “adverse reactions to fluoroquinolone antibiotics” or they don’t refer to the syndrome as a whole at all, rather, they’ll list the symptoms that their featured victim suffers from, and then note that the victim attributes those symptoms to fluoroquinolone antibiotics. A couple news articles have used the term FQAD, as it was coined by the FDA, and is seen as a bit more official than “flox.”

In online communities new terms are often coined, and they gain traction in those communities. “Flox” is one of those terms. The terms “flox” and “floxie” are primarily used on the internet in support groups for victims of fluoroquinolones. The biggest Facebook group for victims of fluoroquinolones is The Fluoroquinolone Toxicity Group, and their url is https://www.facebook.com/groups/floxies/ (note the “floxies” in the url – it’s easier than https://www.facebook.com/groups/FluoroquinoloneToxicityGroup). Additionally, this site is one of the more popular blogs about fluoroquinolones, and it’s called Floxie Hope. The terms “flox” and “floxie” are used throughout blogs and support groups dedicated to fluoroquinolone toxicity.

People within the “floxie” groups and communities know these terms and what they mean and imply. The people in the “floxie” community know when someone says that they are “severely floxed” that it means that person is suffering from more symptoms than they can count or name and that they are likely bed or house bound as a result of their fluoroquinolone-induced injuries. Of course, everyone’s experience is different, and people are encouraged in these communities to further describe their pain and their experience, but it’s far easier to say, “I’m severely floxed” than it is to list dozens of symptoms then say that those symptoms were caused by fluoroquinolone antibiotics.

Some people really hate the terms “flox” and they particularly hate the term “floxie.” They see the terms as silly and flippant, and they see it as disrespectful to those who are suffering from fluoroquinolone toxicity. Fluoroquinolone toxicity IS a serious and severe illness, and it should be taken seriously by doctors, patients, regulators, and everyone else. It is not a joke, or something to be taken lightly. It is a life-altering, often disabling, syndrome. Fluoroquinolones have maimed and killed people, and fluoroquinolone toxicity should be taken as seriously as other multi-symptom, chronic, mysterious illnesses like M.S., Lupus, Lyme Disease, M.E./CFS, etc.

Neither “flox” nor “floxie” are particularly serious terms, and I empathize, and even agree with, those who see it as minimizing the seriousness and severity of fluoroquinolone toxicity.

But… sometimes terms just stick. Both flox and floxie are terms that have resonated with people in the community, and they have stuck. Many people find it easier to describe their illness as being “floxed” than to describe it any other way. It resonates with people more to say, “floxies unite!” than it does to say, “victims of fluoroquinolone antibiotics come together!” For the purposes that the the terms are used, they work well for expressing what people want and need to say. I don’t think that anyone who uses the terms “flox” or “floxie” mean any disrespect to the illness or the people suffering from it. In fact, most of the people using the terms are either victims of fluoroquinolones or those who love a victim of fluoroquinolones.

I am writing this post on a site called Floxie Hope, so I am, of course, somewhat biased. I like the term “floxie” and it has become part of my brand (if you can say that a blog has a brand). I think that the term sticks in people’s minds and it resonates with them. There is an understanding of what it means–at least within our community. The naming of this site was somewhat accidental–I was trying to figure out how to create a web site and this was supposed to be my place-holder site until I figured out the mechanics of blogging, then I was supposed to think of a more well thought out name for the official site, but then this site got rolling while named Floxie Hope, and 5.5 years later, it’s still going and here we are.

I hear the people who think that “flox” and “floxie” aren’t serious enough terms to connote the severity of fluoroquinolone toxicity. In a lot of ways, I think they’re right. BUT, I don’t think that the term has held this community back. We have made a lot of progress over the last decade. We still have a lot of work to do, but millions of people have become aware of fluoroquinolone toxicity and fluoroquinolone dangers over the last decade, and part of the momentum of this community is our shared language and our shared understanding of terms like “flox.”

The terms “flox” and “floxie” are ingrained in our community, and they are likely here to stay as long as fluoroquinolones are hurting people (I hope for the extinction of the term through the strict limiting of the drugs – but we’re a long way from that and it’s certainly a matter for another post). I think that the terms are doing more good (through ease of communication, bringing people together, and having terms that resonate with many) than harm.

I am hopeful that the terms “flox” and “floxie” will someday be so well understood and accepted that they make it into the dictionary. The only criteria for words making it into the dictionary is that they appear in edited text, so I actually hope that more journalists start using the terms “flox” and “floxie” in their articles. Having the terms “flox” and “floxie” in the dictionary would be wonderfully validating, and it would help to increase awareness of fluoroquinolone toxicity.

When I describe this site, I often try to tell the back-story and give the long explanation of how I was hurt by ciprofloxacin. Sometimes the person who I’m talking to says something like, “Oh, you’ve been floxed – that happened to my sister-in-law.” The word is getting out, and the terms “flox” and “floxie” are spreading. It’s a good thing. Awareness is one of the most important steps toward change, and short, easy-to-remember terms like “flox” and “floxie” help people to become aware of the dangers of fluoroquinolones.

*****

The Loss of a Loved Community Member

The “floxie” community lost a wonderful person last week. His name is Marc Thavenot, and Levaquin killed him. Marc struggled with fluoroquinolone toxicity for three years. He fought for his life every day of those three years. However, in November 2018 he lost his battle.

Officially, his cause of death was suicide. But the truth of his situation is much more complicated than the simple label of “suicide.” I suppose that all suicides have more to them than simply someone taking his or her own life. There is always a back-story.

Marc’s back-story is that he was tortured by a combination of fluoroquinolone toxicity (Levaquin), benzodiazepine damage, and Lyme Disease. On his web site he described his situation:

“In October 2015 after I had a fall and broke my hand i was put on a drug called Valium which is a benzodiazepine for anxiety and insomnia. Then 3 weeks later I was given an antibiotic called Levaquin for what the doctor thought was a stubborn ear infection. Little did I know that not only are these two drugs dangerous by themselves but are contraindicated when given together and risk for toxicity goes up tremendously. Upon taking the second dose of Levaquin, day number 2, I awoke at 4am with the most terrifying symptoms one can imagine. I felt the most horrific impeding doom, burning all over, ringing in my ears, blurry vision, panic, anxiety and fear unlike anything i could have ever imagine. For the next couple weeks these symptoms persisted along with the most brutal insomnia one can imagine with no sleep for days on end. Having already been dealing with having Cerebral Palsy my entire life this was just life shattering yet I had no idea what was yet to come. A couple months of this and things began to get worse with hallucinations, blood pressure spikes, body temperature deregulation, bone pain, shortness of breath, adrenal crashes, immune system crashing, GI problems, food sensitivities, rashes, teeth pain. It was just absolute hell everyday and i was completely unable to function and no doctor could figure out what was wrong.”

For three years Marc dealt with these issues and more. One of the more devastating symptoms that Marc dealt with was tinnitus that ruined his ability to do his job as a music producer and sound engineer.

Marc tried many things that he hoped would help his situation. Tragically, none of the things he tried cured his fluoroquinolone toxicity, benzodiazepine damage, or Lyme disease.

Perhaps with more time some of his symptoms would have faded, or maybe a cure for fluoroquinolone toxicity, benzodiazepine damage, or Lyme disease would have been found. Perhaps the thing that would have helped Marc to turn a corner toward healing would have come in a few more months, or a few more years. Tragically, we won’t know if solutions would have come to Marc. His time here is over, and that is so, so, so horribly sad.

Like many, maybe most, people, I struggle to find the right words to say both to a person who is suicidal and about a person who has committed suicide. I am not equipped emotionally, nor do I have the right training professionally, to say the “right” things to/about people who are suicidal. So, I have steered away from the topic, and suggested that people reach out to suicide prevention hotlines and mental health professionals. I still suggest both of those things. The National Suicide Prevention Hotline can be accessed through http://www.suicidepreventionlifeline.org/ and 1-800-273-8255. The people who answer the Hotline calls have tools and resources to help steer people away from suicide, and I hope that people use the Hotline as a resource. However, I’m bothered by my own suggestion that suicidal people “reach out.” I’m bothered by the suggestion because Marc DID reach out. He reached out to to many of us in the floxie community, including me. He asked questions and he sought advice, and he was given guidance to the best of our ability. But nothing helped, and his health continued to decline until he couldn’t take the pain any longer. Now he’s gone. I wish I had done more to help Marc. I wish I had known the right thing to say to him, or the right advice to give him that could have possibly shifted his path. I wish he was still here.

I know that there are others in the floxed community who feel guilt over not “doing more” to help Marc. I’m sure that you all did what you could. I did. But I wish I had done more, and I feel bad about not doing…. I don’t know…. more. But as a friend pointed out, why are we feeling guilt while the people who gave Marc the drugs that killed him feel no guilt or remorse about their role? The pharmaceutical company creators of Levaquin, the FDA (or the equivalent on Trinidad and Tobago), the doctors, etc. played an active role in poisoning Marc, but most of them have no idea, and they feel no guilt, while we do, and Marc is gone.

I hope that Marc’s family and friends know that the thoughts and prayers of many people throughout the world who “knew” Marc through the fluoroquinolone poisoned community are with him and them. He was clearly loved, and he is missed.

Levaquin, benzodiazepines, and Lyme disease killed Marc. He was tortured by the illnesses brought on by these pharmaceuticals for years, and I can’t say that I don’t understand how they could lead to his suicide. But, with all the love and respect in the world to Marc and his loved ones, can I please encourage all my floxed friends reading this to not go down the same path? Death is permanent. With death there is no hope or chance of healing. For every day that you are alive, there is a chance that healing will occur. There is the chance that discoveries will be made that will lead to cures. There is a chance that your body will cross a threshold toward healing. There is a chance of joy. There is a chance of love. There is life. There is hope.

I hope for strength for each of you. I hope that you get through fluoroquinolone toxicity. I hope that your body, mind, and spirit heal. I hope that you maintain hope, and that tomorrow (or the next day, or the day after that) brings the healing that you are hoping for.

I hope that Marc’s loved ones know that he touched the lives of many people throughout the world. He is missed, and our community is in mourning.

*****

Marc’s friend Nicholas asked me to share this message. It includes Marc’s last message.

Marco and I were friends since we met in 1999, best friends since 2002. We had a business together and we helped each other through some tough times and eventually, unwillingly, we were forced to dissolve the business for economic reasons and a shift in the landscape of home studios. It wasn’t easy. We had our differences of opinion and that coupled with other developments in my own life caused us to grow distant for a while though we frequently spoke via phone and message. We overcame our differences, our defunct business, and leaned on each other again and became brothers.

Over the last 3.5 years of him suffering we visited when we could, but spoke at least 3 or 4 times a week minimum for 30 mins to 3 hrs depending on how he was feeling. During the last 2 months, we spoke every day. I am recovering from my own issues, and I always hoped that he was doing the same, but it never came to pass.

Most people couldn’t endure watching him suffer. It was my honour to do so and help him through it, but to all who feel a ‘how’ just know, he understood. He often lamented that all those that surrounded him before had disappeared, but he knew how hard it was to watch someone suffer. He held no grudges.

Above all he wanted me to pass on this message so that people could know what he went through, what this drug, this dangerous ‘last resort only’ drug that is still treated like it was Panadol, did to him.

He was suffering from brain fog, which will be evident in his writing. I think it brings the message home with greater strength…

Marc’s words:

I wanted to write to you to thank you for all that you have done. Not once did I think that you didn’t do everything possible for my well being

The more I understand of my situation the more I realize I’m stuck in a very complicated viscous cycle. Iv just had a lot of trauma in my life that Iv struggled to let go of and it’s not because I have not tried but because it’s trsuma I have to relive everyday from young I was in pain and it was a physical and emotional struggle to do simple daily tasks even though I didn’t show it I certainly felt and I kept strong and pushed through. This built up trauma eventually weakens ones immune system and emotional health which I why I struggled so much with depresseion even though I didn’t show it as much

My accident breaking my hand was another trauma that started the ball rolling and then having surgery introduced anesthesia that also did not help the situation. Then came the final blow the levaquin which obviously damaged me in very serious ways I’ll never know for sure but I know was never the same after taking that drug.

I cannot begin to describe pain Iv felt everyday with having to live with CP. it was agony that existed both emotionally and physically. Then getting floxed and experiencing absolute nightmare symptoms daily And then to have so much taken away and have having fought to heal only to get worse and relapse due to who knows what. Fq toxicity is no joke and it has been just too much for me to deal with I have no life. This is not living.

Everyday since since I took that drug levaquin iv felt unattached, like my Head was filled with cotton and I couldn’t focus. every bit of sleep I got which was minimal I woke up to me extremities feeling like they were being crushed and burning. The main symptoms that were horrific with adrenal surges and BP spikesc of 210/110. Then it would drop to low 90/50. I have internal vibration that felt like if I was hooked up to a low voltage shocking station. I have severed moods swings with crying fits for no reason, my body felt heavy like someone filled me with lead. I feel completely exhausted but couldn’t sleep because i felt this pressure in my back my head that squeezed my head almost like if I had a parasite octoputus like thing in my head. Everyday I have severe abdominal pains that would feel like someone stabbing me with a knife. My mid and lower back would ache feel tense. I had several parts of my body feel numb and go completely week on a daily basic. My teeth would ache everyday. My jaw would be tense. My ears suffered horrible as they would be extremely sensitive to sound and burn life fire inside. I have nerve pain all over my body . I have stabbing bone pains in shins and arms. My vision is double blurry and not what It was. My chest feels like someone sucker punched me in the soloplexus. I have skin burning all over which feel so bad sometimes even taking a shower hurts. I feel like I’m out of my body with extreme brain brain fog fatigue and pressure all over my body and when I push to do anything I feel pressure all over my body with fatigues like some sucking energy out of me get worse. fingernails hurt and have arthritis like symptoms that make it hard to type play guitar etc. I have severe digestive issues with bloating constipation food intolerances. I can’t tolerate the sun or groups of people which makes going out or liming with friends almost impossible. My ears click with damaged euststion tubes so I hear things louder and sounds like resting a glass down on a table or a speaker phone would hurt my ears and I would hear audible distortion in my ears if I tried listening to music even at very low levels. All of these symptoms and more iv have endured from the day I took those pills. It’s now over 3 years and I still experience all of them in groups randomly everyday. Lack of sleep and depression have been a huge challenge as iv been not able to work feel joy do daily activities etc. fq toxicity is no joke and it ruins lives. Iv had countless doctors tell me it’s in my head it’s anxiety disorder. Bullshit. Cause after 2.5 years of hell I went on to antianxiety medication which barely helped. Except I feel more sedated but still can’t sleep. Fq toxicity can include damage of receptors in the brain that are responsible for managing our neurotransmitters. It can cause dna damage. Vegus nerve damage. Totally destroy your microbiome. Damage to mitochondria which is your main cells Responsable for energy production. It can damage immune function and send you body into extreme fight or flight which it did for me. Allowing infections viruses etc to wreck havoc as they have the oppertunity. After extensive testing in my journey to try and heal. I’m positive for Lyme , babesia , Scarlett fever, ebstein bar, cmv, herpes hsv 1 7 and 8, hpv. Rubella and a collection of parasites. What I did find out was I didn’t get my cerebral palsy from lack of oxygen at birth which usually leads to full body defects and speech problems. I had a different cp which is common with cmv virus infection in the nervous system. This would explain all my life I struggled with being unable to relax and have an easy time with relationships because my nervous system was compromised. It was difficult for me to be social. Well thing is the levaquin I took activated that virus and made it much worse along with everything I mentioned above so my cp got worse I now I’m forced to walk in crutches. Fq toxicity damages cyp450 liver engine pathways which responsable for metabolizing herbs drugs etc. no longer can I take pain killers thc or several other things that could have helped ease my suffering. This has affected me greatly as it’s affected my detox pathways and left me unable to detox like a normal person. Which creates a very toxic environment in your body which leads to more symptoms due to leaky gut and poor methylation.
These are things doctors are commonly unaware of and is why Iv had no real help because there really is no solution to what iv been going through. After 3 years and I’m actually worse off now after everything I’ve tried I really don’t know what else to do. All I know is life is absolute torture everyday and a struggle and I never knew someone could feel so bad. Only one who has experienced this could ever possibly get it.

I want everyone to know that there is so much more to what’s was going on with me that I would take a lifetime to explain. But the pain and torture that I go through nigh and day over and over again is just too much for one to endure. So please if your reading this don’t be angry or mad or sad or hurt because you think Iv done a bad thing. Know that I’m free of the worse pain and torture that I could ever imagine and please feel a sense of ease knowing that I no longer suffer. I know I’m my heart that my soul is in a beautiful place. And that it was just stuck in a sick body.

Healing from Fluoroquinolone Toxicity Takes Time, Perseverance, Strength, and Kindness

Ruth wrote this as an update/guest post. You can read Ruth’s story of fluoroquinolone toxicity in “Ruth’s Story – Cipro Toxicity.” You can also listen to Ruth’s story through her episode of The Floxie Hope Podcast. Ruth has offered her insight and wisdom to thousands of “floxies” over the years. As of the publishing of this post, her story has almost 1,600 comments. If you read through them, you will see how Ruth has generously given her time, insight, wisdom, and advice to those who are struggling. The comments are just a small sampling of what she has given to the fluoroquinolone toxicity community. Ruth has given so much to others while going through the ups and downs of fluoroquinolone toxicity herself. She is a kind, thoughtful, generous, person, and I am honored to call her a friend. As you will see from the post below, she can use a bit of encouragement and appreciation, so I’ll take the time to say thank you to her. THANK YOU, RUTH! 

Floxiehope update 7/19/18

I’m not 100% healed yet. I had another relapse lasting a few months during the second half of this school year. My blood pressure kept going up in response to doing just about anything. I felt overwhelmed just about all the time. Earlier in the school year I would go work out after school and feel marvelous afterward. When the relapse started by the time my teaching day ended my blood pressure would be up way too high for me to exercise. This caused my base line blood pressure to hover around 140/90, which is what happens when I don’t do any cardio. But by the end of a day it would be 170/110 or higher.

Friends kept telling me to go on medication for high blood pressure but I just didn’t feel like my problem was with the cardiovascular system. It seemed like my autonomic nervous system was sending the wrong message and that was what was ramping up my blood pressure and heart rate. If I was about to be eaten by a bear, this would have been an appropriate response. My body was responding to the stimulation of a normal teaching day as if I was in mortal danger. But like most flox symptoms, I knew this could stop happening at any moment, and I really did not want to be on strong antihypertensives when that happened.

Since the school year ended I have been feeling better. Still mildly hypertensive, but better. I need to clean up my diet and exercise more. I’m working on that but I have not been checking my BP right now as if it is a little high that upsets me, which is counterproductive at this point. I don’t get that feeling of increasing anxiety, of things being overwhelming or of my blood pressure sky rocketing. If anything I feel a lot more normal than I have for years.

Not being able to work out definitely hurt me when fireworks season started, so I got really sore. At first my back hurt, then my core and abs hurt and then nothing hurt and I could lift whatever I needed to. It was amazing how fast my body recovered and gained strength. I’ve been more motivated to work out and especially to strengthen my core.

I would say the most troubling aspect of my post flox life right now is new floxies who ask me for advice and then get completely freaked out that I still have relapses and am not symptom free. They accuse me of lying to them. They block me on Facebook. They tell me I have not really healed very much and they need to find someone to talk to who has healed. Once again, I felt the temptation to turn my back on the flox community forever. It seems that since I didn’t heal 100% some floxies feel I have nothing to say. I almost believed them.

But my story is my story. My healing journey is my own and no one else’s. It is my belief that I will see 100% healing but I think it will take between six to seven years total. I think the very stressful job I had prior to this year pushed my nervous system to make more repairs and when it did that I felt it. I think this year I pushed myself way too hard doing administrative tasks for teaching with a nervous system that still does not like too much of that kind of thing. I love my new school and Wisconsin has merit based pay for teachers. I put in a lot of time on grades and lesson plans so that at the end of the year I had the documentation I needed to show I did my job. It pushed my nervous system when I was spending ten hours on my day off doing stuff for school. That’s a long time to sit and enter data into a computer. For anybody.

I think also there is an emotional aspect to dealing with getting floxed and I couldn’t do it right away. I couldn’t even cry without it feeling like someone was squeezing my brain. I didn’t have normal emotions for years. Aspects of my personality were missing that didn’t come back until year three. Suddenly, this school year, I had the emotional capacity to ask, “What just happened to me? How do I feel about this? Am I coping all right with this?”

I was so busy though, working so hard at my teaching job and I did a lot of arranging music for my choir this year also. They do better with three part music than four part, so I arranged public domain hymns into three part choir anthems. Between the two jobs every spare minute was spent concentrating, bent over a computer screen. But my brain didn’t want to concentrate on all that stuff or on teaching my classes, it wanted to process what had happened to me when the flox bomb went off in my body and brain four years ago. Some of what I was experiencing toward the end of this school year may actually have been PTSD.

So as fireworks season winds down and I have more time I am working at healing not just my nervous system but my spirit. I’m giving my brain time to just do nothing, think of nothing. I’m giving my body time in nature to just experience things like swimming and hiking. I have had to let go of the dream of a perfectly clean house before school starts. I have had to allow myself time to heal. Not physically. I am pretty much physically healed. Time to heal mentally, emotionally and spiritually.

I probably am still lacking a few receptors for gamma amino butryic acid compared to if I had not been floxed. I do believe that those will be replaced eventually because I believe in neural plasticity.

I am still a bit low on magnesium, but now it takes working hours in 95 degree heat and humidity for me to notice it. My teeth started to feel loose while I was drenched in sweat working to set up fireworks shows, but as soon as I took some magnesium they tightened up and the anxiety I had felt building went away. I used to notice symptoms of magnesium deficiency like that if I didn’t take some every two hours just sitting around indoors.

I used to have to eat breakfast and take a magnesium pill the moment I woke up. Now I walk two miles or more before breakfast and I don’t always remember to take magnesium before I do it. I have noticed that my legs don’t hurt no matter how much I walk or stand. It takes a lot for me to get physically tired. So I am making progress, and I definitely think my cells will once again be healthy and filled with magnesium and I won’t have to take as much as many magnesium pills as I do now to keep them that way.

I think what really remains for me to reach 100% healing is for me to completely come to terms with what happened to me, to recover from the PTSD the experience seems to have caused. I was in a situation in which my body was failing me, I didn’t know how bad it was going to get or even if I would die. The flox bomb going off can cause some shell shock. Only if you have experienced it can you understand that, and realize I am not meaning to diminish the PTSD experienced by our soldiers. But like them, keeping busy can only delay the PTSD symptoms. Eventually, our mind says, “Hey, this thing happened, and it was really bad, and I really need some help to cope with it, because I really couldn’t cope at the time and I’m not sure I can now.” We can get physical symptoms that are a manifestation of our inability to cope– like my blood pressure and heart rate constantly becoming elevated. I wasn’t overwhelmed with my teaching duties, per se, although I may have pushed a little nervous system healing by doing so much computer work. What really caused my last relapse was my absolute need to stop, to pause, to reflect, to heal from that flox bomb. Not physically. That part of my healing is very nearly complete. I need to heal mentally.

I need to stop and rest so that my mind can process what happened and be ok with it and pause and see that I really am ok now.

I think what I have to say has value even though I am not 100% recovered yet. It would be nice if there were some magic pill, a miracle cure that could make flox damage go away instantly. There’s not. And even after the physical damage heals, there is the emotional aftermath. Personally, I think someone who has coped with the flox bomb for four and half years may just be able to give better advice about coping with getting floxed than the person who managed to heal in a few weeks. Even if a floxie does everything the quick healer did it does mean he or she will heal as quickly. We are all different. There are no guarantees. There is no protocol for treating FQAD. It’s great when someone can share a supplement they took and someone else feels a bit better from it, but none of us are sharing overnight cures, because there are none.

Getting floxed does a tremendous amount of damage to the human body. That the body can heal it is amazing. That it can take a significant amount of time to do so is frustrating. That it sometimes cannot heal all the damage is a real possibility. Talking to people who healed slowly, who faced the fact that they were damaged badly enough that they may not heal all the way, is going to provide wisdom that is way more important than what supplement or treatment you could try.

I have always believed that improving parasympathetic nervous system function was at the core of healing floxies. Learning coping skills is all about choosing “rest and digest” over “fight or flight” no matter what is happening to you. Not saying it’s easy. But it’s a choice of learning to live life despite your circumstances, or deciding your life is over because your circumstances aren’t good. I have learned to make a great life for myself even when my circumstances were pretty crummy.

When I look back over the past four and half years, most of my memories are good. There are some pretty horrible ones in there too, but once I got past about month four or five, I could live even with the symptoms I had. When I look back on those times I remember the things I did, my accomplishments, and the people I spent time with. I really don’t remember the symptoms I was having, or if I do it is in passing and they certainly don’t dominate my memories.

Here’s something else to consider. How many people do you know with perfect health? Everybody has some issue(s) they are dealing with. Some of the middle aged women who work at my school have told me of their struggles with menopause and I have to say, other than that rough stretch toward the end of the school year, I generally feel a lot better than they do. I’m floxed, yes, but I can think of a lot of people who aren’t floxies who aren’t as healthy or as active as I am.

I’m four and a half years out and I still have some healing to do. But when I look at where I started compared to how I feel today, I know I am blessed. I’m incredibly saddened when floxies decide I have nothing to say to them because I didn’t heal 100% yet.

I think we need to treat one another better in the flox community. I actually know of some people who healed 100% who no longer are willing to support other floxies. Perhaps the behavior of floxies seeking help actually drove them away from the flox community. When seeking out advice of another floxed person, it is important not to forget that this person probably went through hell and may still be struggling with issues, struggling to cope with what happened to them, just as you are. Most are happy to share advice and emotional support, but few of us are medical professionals and we aren’t getting paid to help other floxies. We do that out of the goodness of our hearts. If advice we give isn’t helpful, then say thank you and move on. But don’t expect any floxie to have the magic bullet. There isn’t one. It is going to take time for you to heal.

Our society does not like to admit that some things that are painful are going to be that way for awhile. When I was widowed back in 1993 I had friends tell me that if I was still feeling sad in a month or two there is probably something wrong and I would need to get some professional help. I know a floxie who was prescribed Benzodiazepines because she lost a loved one. When she took Cipro it threw her into Benzo withdrawal, but she would never have been in that situation but for this idea that any suffering is intolerable and must be medicated away. This may be why our medical system does such a terrible job of treating chronic illness. It is quicker to prescribe a pain pill to get rid of the symptoms than to really dig into the cause of the illness.

Anyone who has dealt with grief knows the time line my friends suggested when my husband died was way out of whack. The floxie time line is more similar to the grief time line than anything else I can think of. And like grief, it may never totally go away. It will never be as if you had not loved and lost. You are forever changed. It will never be as if you were never floxed. I am forever changed because I got floxed even if I have more healthy mitochondria then when I started, if every cell of my body is brimming with magnesium and all my antioxidants are functioning beautifully and if I have more GABA receptors than I started with, I still experienced the flox bomb go off in my body and it was beyond horrible. That experience will always be with me as much as the moment I heard that my husband had been killed.

A few Sundays ago I played a hymn in church that had comforted me after Danny died, and suddenly I was crying so hard that I couldn’t sing and it was like I was 25 years old again and going through all that grief the first time. Some wounds don’t ever really go away, but you can live with them. You can survive and thrive and sometimes, even grief feels good. I can cry again without it feeling like someone is squeezing my brain. How I cherish that blessed release tears can bring!Now I can cry about the flox bomb too, and probably, if I live to be 80, there will be a day that a certain memory hits me and I cry about getting floxed all over again.

I am just asking floxies who seek advice from other floxies to keep in mind that what we are all dealing with is a chronic illness. It lasts a long time for just about everyone. Some people are able to heal from it, which is amazing and wonderful. But even those who don’t heal, but learn to cope, have done a tremendous thing and overcome a lot. They should be celebrated and listened to, because learning to cope is over half the battle, and some scars are simply going to be there forever. It is way past time for the medical community to stop doing this to people. But at least we can treat each other well.

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

 

Review of Through the Shadowlands

I just finished reading Through the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand by Julie Rehmeyer. It’s a memoir about the author’s journey through Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). It’s a beautifully written, thoughtful, insightful look at ME/CFS, and how Rehmeyer got through the harrowing illness and regained her health.

Many floxies deal with horrible, intractable fatigue, and suffer from ME/CFS after getting poisoned by Cipro, Levaquin, Avelox, or other fluoroquinolones. I experienced some fatigue while going through fluoroquinolone toxicity, but I never considered myself to be afflicted with ME/CFS (my fatigue episodes passed relatively quickly–thank God). However, the bouts of fatigue I had were frightening, and going through my own “mysterious illness” gave me empathy for others dealing with under-acknowledged diseases. I became facebook friends with several people in the ME/CFS community, and I gained an even greater appreciation for the severity of ME/CFS and the strength it takes to endure it. It truly is a horrific disease, and the horror of it is only compounded by the lack of acknowledgement it receives.

I hope that Rehmeyer’s book brings attention to ME/CFS, and that people recognize how severe and devastating the disease truly is. And I hope that recognition of ME/CFS brings attention to all multi-symptom, chronic, mysterious illnesses that “can’t be reduced to tidy pathologies or a uniform set of symptoms.” These illnesses are real–they are not “just in your head,” and they are less “rare” than people would like to acknowledge. Yet these illnesses are systematically overlooked because they are too complex to form a single hypothesis around. Autoimmune diseases, neurodegenerative diseases, autonomic nervous system diseases, mitochondrial dysfunction diseases, fibromyalgia, ME/CFS, POTS, EDS, and, of course, iatrogenic diseases like fluoroquinolone toxicity, are complex and multifaceted, and they affect every part of the body and every individual differently. They’re difficult to study, but studying them is important. Ignoring them, and pretending that they don’t exist, isn’t helpful to anyone.

Some parts of Through the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand really resonated with me, and reminded me of my experience with fluoroquinolone toxicity. I’m going to point them out here, along with comments, with the hope that they will trigger in you some of the recognition they triggered in me.

In the epilogue, Rehmeyer states:

“Although I’ve certainly worked hard to improve my health as I have, I also want to be clear: I got lucky. I could have done everything I did and still be desperately ill. I think I get some credit for my improvement, but only some. A big part of it is simple good fortune.”

Yup. I’ve been meaning to write a post about the luck aspect of recovery for a while. Why did I recover from fluoroquinolone toxicity when others don’t? Luck. Pure, simple, unfair, ridiculous, stupid luck. I got lucky. I was able to get into a spiral of health. Early in Through the Shadowlands, Rehmeyer says that health and illness are like valleys between hills, and your state of being is like a marble (or boulder–depending on how big your metaphorical valleys are) that is trapped in that valley. It’s easy to stay in the valley–whether that be the health valley or the illness valley. It’s difficult to push yourself up a hill into the other valley. (Hopefully I’m remembering the metaphor roughly correctly–sorry if not.) I was able to get over that hill, into the valley of health, and I was able to do it without near as much suffering as others. Why? Luck. I’m not a better person, nor did I do more things correctly. I was just luckier.

In chapter 19: Moldy Science, Rehmeyer states:

“Learning all this, I felt as if my brain were quietly exploding. A scientific organization put out a statement that was contrary to science, and scientists couldn’t get it removed for 12 years! How could that happen?

And if respected organizations could sow doubt about whether mold is a significant risk factor for asthma–a link that had been observed in the very first textbook on asthma ever written, in 1698–what hope did I have that science would come to understand my weird illness?”

Science is political. You knew that, right? It’s not supposed to be, but it is, so don’t think it’s not.

Just as there have been scientists silenced about the dangers of mold for decades, there are scientists who recognized that topoisomerase interrupting drugs, like fluoroquinolones, are a very bad idea, and are quite harmful to mitochondrial and bacterial DNA. Perhaps messing with our mitochondrial and bacterial DNA and RNA replication enzymes isn’t a particularly good idea. But if a scientist was to say something as brazen as that he or she would be admonished, and maybe even punished.

Throughout Through the Shadowlands, Rehmeyer seems to struggle with her worldview. Is she a scientist who only does treatments that are backed up by placebo controlled trials, or is she a person who is willing to try anything to get better, even if it has a woo-woo component to it? If she tries the alternative treatments, can she still consider herself to be a skeptical scientist? But if science is failing her, and her fellow ME/CFS sufferers, does it deserve the credence and weight she gives it? After a significant struggle, Rehmeyer seems to settle on the approach that depends more on evidence gathered from her personal experience than evidence gathered in labs. She opens herself up to alternative treatments, and reluctantly finds that they help her. She seems to long for evidence of why they help her, and to struggle with the possibility that they are just placebos. At the end of the book, it seems that Rehmeyer stops trying to find identity in the science vs. alternative medicine paradigm, and she settles into a worldview that identifies her as a person with ME/CFS, who has overcome the disease, and who is now part of that tribe. The scientist and woo-woo tribes are less significant, what is significant is her tribe of fellow sufferers (and her family and other loved ones).

In chapter 11: An Unlikely Hypothesis, Rehmeyer writes about the facebook community of fellow ME/CFS sufferers. She states:

“My attitude toward my fellow patients had already started to soften as I had been exploring the forum more, and on Facebook, I found them endearing, and even inspiring. I saw how they turned to one another not just for advice as on the forum, but for a community and support and a social life after they’d been abandoned by so much of the world.”

I find the floxie community, largely found on facebook, to be incredibly inspiring. They are brave, thoughtful, generous, wonderful people, and I am honored to be among them. I also appreciate the other chronic illness communities, including the ME/CFS community, the POTS community, the floxie community, the other pharma-injured community, the fibromyalgia community, etc. All of these communities of people with chronic, poorly understood diseases are wonderfully supportive and strong, and they are appreciated.

Much of Through the Shadowlands felt familiar. I knew who many of the people were that Rehmeyer wrote about, even when she didn’t refer to them by name. I felt as if I was reading about the journey of a friend (or, at least a friend of a friend), and in some ways, I was. The community of people affected by mysterious, chronic, under-recognized illnesses is small, and we have many fights in common. We’re in this together–fighting for recognition, and cures. If Through the Shadowlands helps those suffering with ME/CFS to gain recognition and acknowledgement, perhaps it will hep floxies and others living with mysterious illnesses too.

I recommend that you read Through the Shadowlands. It’s a good book. It’s a well-written, insightful, thoughtful memoir, and I suspect that it will resonate with anyone suffering from a mysterious illness.

********

If you would like to get your microbiome sequenced through Ubiome, here is a 10% off linkhttp://ubiome.refr.cc/VDDLNWP .

ubiome logo

1,000,000 Views!

Screen Shot 2016-06-22 at 3.58.08 PM

Floxie Hope just surpassed ONE MILLION views! Whoo hoo!

A lot of people have learned about fluoroquinolone toxicity through reading the stories and posts on this site, and I’m pleased beyond words about that! From reading the stories and posts on Floxie Hope, thousands of people have learned about how fluoroquinolones can cause multi-symptom, often chronic, illness. It is a pleasure and an honor to be informing people and spreading the word about the dangers of these drugs. More than that, it’s a pleasure and an honor to be offering hope and support to people who are going through fluoroquinolone toxicity. Floxie Hope wasn’t started to raise awareness – that’s just a lovely byproduct – it was started to offer hope for healing to people going through fluoroquinolone toxicity. It was started to let people know that recovery is possible, and to tell them that they too can make it through the mess of fluoroquinolone toxicity. I hope that with each of the 1,000,000+ times this site was viewed the person visiting gained a little more strength, and a little more hope.

Healing is possible. Recovery is possible. Try to believe it. It can be difficult to believe that recovery can happen when going through the depths of fluoroquinolone toxicity, but keep trying. Keep believing that you will improve. You will.

I should acknowledge the people who don’t recover from fluoroquinolone toxicity, and I hope that those who are still ill after years of struggling, who know that they will never fully recover, realize that I don’t mean any disrespect to them. I think that hope is important for all of us, even those who are forever changed by these horrible drugs. We all need hope, even if it’s hope for tomorrow to be better, not hope for a full recovery.

This site has gotten far more traction, and far more attention, than I could have envisioned when I started it in 2013. What I’m more proud of than the 1,000,000 views mark though, is the community that has been built. More than 12,000 comments have been made on the home page of Floxie Hope, and almost 19,000 have been made on the site as a whole. In these comments you will find people asking for advice, and others responding with support and guidance. You will find people sharing their hopes, fears, remedies, insights, and warnings in the comments throughout this site. Knowledge has been built and gained through the community of people commenting on Floxie Hope. People have selflessly offered their time, expertise, guidance, advice, support, and LOVE to other “floxies.” This offering of love and support for other people, whom each commenter hasn’t met in person, is really beautiful, and I appreciate everyone who has commented and formed the community that is Floxie Hope.

I also appreciate everyone who has contributed their story to Floxie Hope! The stories of hope and healing are so valuable, and so helpful! Thank you to everyone who has written a story about their journey through fluoroquinolone toxicity, and recovery!

I recently received this lovely message from Josh:

“Thank you so much for all you have done and continue to do on behalf of us floxies worldwide. Your guidance, insight and determined spirit helped me through so many dark days at the height of my illness. Where there was no good advice or hope, you provided the light of both. It’s been nearly 3 years since I suffered my reaction, and even though I didn’t think I’d ever get better…here I am, happy and healthy. Thanks again, you’re a rockstar and help people more than you understand.”

I cried. That’s why this site is here. That’s why thousands of people have viewed this site, and hundreds have joined the Floxie Hope community – because hope is powerful.

Our stories are moving, and our truth is powerful. What happened to us matters and the louder we scream our stories – our truth – the more we will change the system. Progress has been made, but we still have a lot to do. There are still too many people getting hurt by fluoroquinolones, but hopefully that will change someday soon. Until the day comes when the madness of people being hurt by fluoroquinolones stops, we can stay here and offer help, hope, and community to those who need it.

Thank you to all who have made Floxie Hope. It’s all of us, together, making a difference.

 

flu tox get help you need banner click lisa

I Heart The Floxie Community

DiegoMelanieJose

Diego, Melanie and Jose

Diego posted the above picture with the note, “Sometimes in life you come in contact with people whom God puts in your path! Although it was unfortunate that our paths crossed due to being affected by the same type of antibiotics we have supported and encouraged each other! Building our lives back to complete health! Thanks for ur friendship guys!”

Isn’t that lovely and awesome?

Diego also wrote:

There is something definitely powerful in uniting yourself with others who have a drive and determination to get better. This weekend I had the privilege of meeting other individuals who were affected by fluoroquinolones and we talked about our symptoms of course. However, there was conversation about our dreams, goals, and fire to keep pressing through this pain. I felt empowered to keep fighting and felt so much peace about knowing that we will all recover. We shared our remedies and gave each other tips about getting better. Our lives are definitely forever changed. I choose to believe that it will be changed for the better. Hang in there we will OVERCOME this!!! Now, I am blessed to call Jose and Melanie my friends. I can’t wait to meet more people affected by these antibiotics. Keep fighting, keep pressing, keep believing, YOU ARE WORTH THE FIGHT!

<3!!!!!

None of us would have asked to become a floxie. None of us would have asked for the painful peripheral neuropathy, the torn tendons, the chronic fatigue, the brain fog, the loss of money and relationships, or, really, any of it. But the awful did happen. It’s unfortunate, and if we could turn back time and re-do things, I think that most us never would have taken those drugs. But if we turned back time, and were never floxed, we never would have gained the friendships and community that many of us have as a result of banding together with other floxies. And since we can’t turn back time, we may as well appreciate the friends that have come into our lives because we are part of the floxie community.

As the wonderful admins of The Fluoroquinolone Toxicity Group (4,600+ people – wow!) always say to new members:

welcome to a group that no one wanted to join! Actually, this is the best group of people you will ever meet but the reason we’re here really sucks. The friendly folks here understand what you are going through and really want to help, whether you are a victim of fluoroquinolone toxicity, or a loved one who is taking care of one.

Indeed–The Fluoroquinolone Toxicity Group is full of friendly, thoughtful, wonderful people! People in the group spend hundreds of hours helping each other, advocating for each other, supporting each other, giving information to each other, and more. Floxies spend time and energy supporting friends who they’ve never met, who would be strangers if it weren’t for the unfortunate connection of being mutually poisoned, through some of the worst times in their lives. The generosity and caring of those in the community truly is amazing. Thank you to everyone who is part of this amazing community!

Floxie Hope also has a community of people who help, support and nurture each other. There are more than 15,000 comments on FloxieHope.com as a whole, and 10,000 on the home page. The thoughtful comments that reflect generosity, caring, knowledge, and a desire to help others, are beautiful and greatly appreciated! THANK YOU to all my wonderful friends who have made this site into a community. I am humbled by your generosity and grateful for your friendship!

I’ve had the opportunity to meet some floxie friends in person. Here is a picture of me with Suzanne:

SuzanneLisa

It is amazing beyond words to connect with someone who really understands what you’re going through, and what you’ve been through. Fluoroquinolone toxicity is so strange, and so unintuitive, that it’s really difficult for those who haven’t been through it to understand. Fellow floxies understand. They “get it” without struggle. It’s wonderful to have friends who understand and empathize with you.

Empathy, friendship, connections, community and understanding – they’re what life is all about. I am thankful to everyone in the floxie community for their friendship and for the wonderful community that has been formed! You are all greatly appreciated!

 

flu tox get help you need banner click lisa