Tag Archives: Hope

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.

*****

Your Illness is Not Your Fault

In my recent post (“Reluctantly Going to the Doctor“) I wrote about getting a minor surgery to address an “issue” and I had a couple more things I wanted to say about it.

When my issue was getting addressed, I asked the doctor if there was anything I could do to avoid having the same issue in the future. He said that it’s just one of those things that happens, and that there’s nothing that anyone can do to avoid it. It wasn’t because of anything I ate, or did, or didn’t do – it was just one of those things that happens. Hopefully it won’t happen again, but if it does, I know who to visit to get it take care of.

Hearing “it’s just one of those things that happens” was actually really nice and refreshing. Even though he didn’t explicitly say it, I heard, “it’s not your fault,” and that future issues wouldn’t be my fault either. It just happens. Sometimes parts of the body malfunction.

For those of us with fluoroquinolone toxicity, we know what caused our issues. They didn’t “just happen.” We were poisoned. And the answer to the question of what can be done to avoid fluoroquinolone toxicity is simple – don’t take fluoroquinolones.

With any sort of difficult-to-treat illness, there are always guesses regarding what to do, how to treat the illness, and how to prevent symptoms in the future. This site is filled with advice around all those questions. Every person who has written about their experience and shared their input regarding dealing with fluoroquinolone toxicity has meant well and has wanted to help, and the stories of hope and healing on this site have helped thousands of people through fluoroquinolone toxicity. But I worry about that line between suggesting things that are healing and blaming people who don’t do the things that are supposed to be healing. Not healing from fluoroquinolone toxicity doesn’t mean that you haven’t eaten the right things, or that you haven’t gotten the right treatments, or that you haven’t spent enough money. Fluoroquinolone toxicity happens first and foremost because people are exposed to fluoroquinolones, but symptoms persist because of all sorts of reasons, most of which are mysterious. Healing happens too, and we can point to reasons and ways that we think our body has healed, but the truth is that healing is mysterious too. Healing happens. The body has amazing healing capacity. But sometimes it doesn’t.

Neither are your fault. No matter what you ate, or what you drank, or what pre-existing health issues you had when you got floxed, or how your infection happened, or any other life factor, your illness is not your fault.

Of course I hope that you find healing. I hope that you find some tools that help you to heal too, and I hope that this site helps you to identify those tools. But if you don’t find the things that help, or if your body just doesn’t heal, it’s not your fault.

I think that letting go of anger and self-blame is healing, and I hope that this post helps some people to stop blaming themselves for their illness. I know that I dealt with a lot of guilt and self-blame in my journey through fluoroquinolone toxicity, and I hope that hearing, IT’S NOT YOUR FAULT, helps someone through their journey.

******

I wrote the above paragraphs in early November 2019 and a few things have happened to me health-wise since. The issue that I had a minor surgery for didn’t heal properly, and now I have to have a more major surgery. The next surgery will involve general anesthesia, and a few weeks of recovery time. I’ve never been a fan of general anesthesia, and have always considered it to be a bit scary. Fluoroquinolone toxicity adds to my fear of it. If any of you have advice for going through surgery post-flox, or anesthesia, please don’t hesitate to contact me. Thank you!

******

Finding the Silver Linings

“Do some good things possibly come out of it? That’s not the point! Some good things come out of a car wreck, but that doesn’t mean we need to have car wrecks. That’s a dumb-butt idea. You can find good out of almost anything. You get enough manure you can grow things with it. There’s good in almost everything. But that doesn’t mean it doesn’t stink to high heaven.” -Dave Ramsey (speaking about things that have absolutely nothing to do with fluoroquinolone toxicity, I just liked the little rant.)

This post is about the lipstick on the pig that is fluoroquinolone toxicity. There are several shades of lipstick that I’m going to point out in this post, and some of the shades are lovely, but they’re still on the big, fat, stinking, disgusting pig of fluoroquinolone toxicity.

No matter what good has come to my life, or the life of anyone else, from fluoroquinolone toxicity, it was still an awful and painful thing to experience. Sometimes pain and suffering lead to growth, and sometimes that growth is valuable or even beautiful, but that doesn’t make the pain or suffering “worth it” or justified in any way. You don’t torture people to make them stronger. You don’t poison people so that they can shift their perspective on the world. You don’t damage every tendon in a person’s body so that they can feel better about saving their children from their fate.

I know that fluoroquinolone toxicity is awful, and that most people would say that ZERO good has come from it for them. Fluoroquinolones have ruined people’s lives. They have killed people. They have disabled people, stolen careers, destroyed relationships, and smashed dreams.

This post is not to justify the pain that fluoroquinolones brought to me or anyone else. The harm that these drugs have done isn’t justifiable.

But life is complicated, and figuring out how to wrap your head around something like fluoroquinolone toxicity isn’t black/white. Perhaps finding the good in difficult situations is helpful (or even necessary) to move on from fluoroquinolone toxicity. Maybe it’s even healing.

A lot of good has come to my life since getting “floxed,” and some of those good things are a direct result of getting floxed. In no particular order, here are some of my silver linings of fluorouqinolone toxicity:

  1. I have this web site. Floxiehope has been a blessing for me in more ways than I can count. It has given me community, purpose, passion, drive, a powerful tool through which to communicate with others, and so much more. I am grateful for all the good that this site has brought to my life.
  2. I now have empathy for people who are suffering from multi-symptom chronic illness. I was never callous toward people with poorly understood illnesses, but I never made any effort to understand them before I got floxed. I now have appreciation for how difficult ME/CFS, Lyme disease, multiple chemical sensitivities, POTS, autoimmune diseases, iatrogenic illnesses of all types, etc. are for people. I now understand that these diseases are incredibly complex and poorly understood, and that people who suffer from them are often victimized over and over again by both the medical system and society at-large.
  3. I have a community of floxed people throughout the world that I love. I have connected with people all over the world who have suffered from the adverse effects of these drugs. These connections have added to my life in wonderful ways.
  4. I now see the harm that pharmaceuticals can do, and I will never blindly trust the pharmaceutical industry, or doctors, again. I think that this skepticism will protect me.
  5. I learned patience and kindness toward myself. I was really hard on myself while I was sick. It didn’t help. Eventually learning patience and kindness for my body, soul, and all other aspects of my self was helpful, and it made me a better person.

Fluoroquinolone toxicity has been such a big part of my life for so long that it has touched every aspect of my life, and all the good and bad that has happened since 2011 has something to do with my journey through fluoroquinolone toxicity. It shaped me. It shaped me into the woman who my husband fell in-love with and married. It shaped me into the woman who took the job that I now have. It shaped me into the friend I am today, and even the daughter I am today. I cannot separate any aspect of my life from the effects of fluoroquinolones because they changed the course of my life.

This post was inspired by a post in The Fluoroquinolone Toxicity Group on Facebook. In it, Gene asked, “Often we hear of people going through a trial in life and then they say, “X was the best thing that ever happened to me”. Can anyone share a ‘best thing’ story about their fluoroquinolone story?”

Several people responded with really thoughtful and insightful answers. With their permission, I am sharing some of the things they wrote:

Alanna: “I was always a health nut, but I became much more informed & disciplined about my general health & healing protocols that work with the body, not against it. I like to help people, including passing on what I’ve learned. My faith deepened, I had miracle answers to prayer. My husband stepped up & did hero’s work, bringing us closer. With limited energy, I trimmed the extraneous out of my life to focus on that which has value, It straightens out your priorities, doesn’t it.”

Charles: “I changed my whole perspective on life, brought me back into my faith, and generally has helped me become a much better person emotionally and spiritually”

Amanda: “Got the opportunity to dive deep with my spirituality. I’ve learned what is and what is not worth my time and energy. I’m much more compassionate and am learning how to be more assertive, as I have to voice my needs for quality of life.”

Annette: “I learned how to be my own doctor. I learned not to trust or rely on anyone but myself (that may sound like a negative, but it has actually served me well post FQ).”

Nora: “Confirmed my belief that Western medicine is about masking symptoms and a business and that sauna, fasting, exercising, and eating well make a difference in one’s health.”

Gene: “I think the best thing I can say about it is I’ve learned that I seem to have an endless will to fight and to not accept that small chalky things i put in my mouth will win. When the first symptoms hit in 2010 I said ” I do not accept this”. I’ve been fighting ever since to figure out ways to get my health back. So I am incredibly strong in that way, even if my body doesn’t always feel strong. The other thing I have gained in this is a stronger faith in the fact that there is much more to this than 80 years and than the end. We enter another world and this one will be but the blink of an eye. So maybe it is teaching me patience as well. The hardest lesson i am beginning to learn and I try to do is forgive the doctor. He did not intentionally hurt me. He is also the victim in a dysfunctional medical system. There are some powerful people in the fluoroquinolone distribution system who I do believe know a lot, and they are not acting as they should. My doctor was not one of them. He will be a victim too when full enlightenment about these drugs becomes the norm and he realizes how many people he hurt. Rather than hate him for what he did I see him more as one might see a pure accident, like an asteroid hitting me and hurting me. S—t happens to people, it’s how this place works. It’s probably good to accept that about this planet and then try all we can to make it better.”

Cathy: ” I have set an example for my kids of what true strength looks like.”

Lisa: “I am alive. Cipro was one of the few antibiotics that does not result in anaphylactic shock for me. It was used to treat a super bug I contracted after cancer surgery. I suppose that is why I am able to reconcile my current situation easier than others might.”

Bill: “Nope. No upside whatsoever. I was fine before and now still trying to get back to baseline. The “best thing that ever happened to me” thing is just an attempt at a cognitive reframe for the traumatic event….helps put it behind you. If it works for ya-great. If something good came as a result of your poisoning—again…great.”

Langdon: “Compassion for myself and appreciation for the people who are nice to me.”

Jennifer: “For sure Levaquin wasn’t the worst thing that’s ever happened to me but it was up there with the top 3 worst. The only good thing that came out of it is it forced me to alter my life and change my diet pretty drastically. I now lead a more healthy lifestyle eating 85-95% organic, way way less refined sugars & processed foods. Additionally, I am trying to lessen the toxins coming into my household by buying mostly cleaning and skincare products that are free of toxic chemicals. Of course it’s not 100% but I’ve made great strides. I’m not sure if I would’ve been on this trajectory had it not been for Levaquin. I was always health conscious but now it’s on another level. I feel like it’s life or death or at least life or really poor health. I truly grasp the concept of “if you don’t have your health you have nothing”. It’s so difficult to do anything (or care for anything) when your health is suffering so badly. I am grateful every day that I’m recovering from this nightmare and I wish everyone here the best. Healing hugs.”

Each and every one of those quotes/comments is thoughtful, insightful, and contains gems of wisdom. Thank you to each person who took the time to write these thoughtful comments, and for allowing me to re-publish them here.

Again, I am not trying to make light of the horror of fluoroquinolone toxicity. It’s not a trite, “make lemonade out of lemons” kind of situation. But I do appreciate all that has grown from the manure that ciprofloxacin brought to my life, and I hope for something positive to come of it for each of you too.

*****

 

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.

Books by Floxies

There are a couple of new books available on Amazon about dealing with, and making it through, fluoroquinolone toxicity. Both of the following books are written by “floxed” women, and both generously share a message of hope, perseverance, and strength through the difficult and painful journey of fluoroquinolone toxicity.

Praying Through Pliés: Living With Lupus and Surviving An Antibiotic Called Levaquin

Praying Through Pliés: Living With Lupus and Surviving An Antibiotic Called Levaquin by Rhonda “Jean” Bolton is described as follows:

“A nurse’s true and inspiring journey of living with lupus and later surviving a devastating reaction to the fluoroquinolone antibiotic, Levaquin, by weaving her faith and her love for ballet into a powerful story of transformation. Beautifully and poignantly written, the author addresses her personal loss, grief, sadness, and anger, but the prevailing message is one of hope, love, and gratitude. Included are sections on exercise, sleep, stress management, and nutrition with simple and realistic suggestions for change. This book has the potential to bring healing, hope, and joy to those dealing with chronic illness, loss, or challenges of any kind, but it is also is for anyone who desires to make positive changes in his or her life. Also written for those who suffer from adverse reactions to fluoroquinolone antibiotics and who are unheard or even discounted, this story provides support and encouragement, while adding one more voice of credibility to their pain and disabilities.”

In an email correspondence, Jean also noted that, “Early readers have said it is a powerful and inspiring story of healing and transformation. I combine faith and my love for ballet to offer others what I have learned about lifestyle changes in the areas of stress management, nutrition, sleep, stress management, and exercise, the importance of positive thinking, and the power of gratitude. My hope is that this book will bring hope and healing to others.”

Thank you so much for writing about your journey through fluoroquinolone toxicity (on top of autoimmune diseases) and for sharing it with the “floxies” of the world, Jean!

The Magnificent Story Of A Lame Author

The second highlighted new book about a woman’s journey through fluoroquinolone toxicity is The Magnificent Story Of A Lame Author by Amy Moser.

The author, Amy Moser, is also the author of the viral blog post, “This Antibiotic will Ruin You.” “This Antibiotic will Ruin You” was viewed and read MILLIONS of times, and greatly increased awareness of the dangers of fluoroquinolone antibiotics.

Amy followed up”This Antibiotic will Ruin You” withThe Magnificent Story Of A Lame Author. The Amazon description of the book states:

“When I was growing up, I pictured myself as a nurse, an olympian, an astronaut…but never handicapped. I just didn’t see that coming. I was as happy and enthusiastic to greet this new challenge, as I would be a swarm of bees. It can be very hard to accept great trial with open arms.
I might be lame, but my story isn’t. Nearly seven years ago at the age of 28, my body suddenly disintegrated underneath me. My doctors had no idea why my previously healthy body was imploding. I was a spunky young wife and mother stunned by her new circumstances. Discovering the cause offered no cure. What now? Where do I go from here?
When I’m overwhelmed by this burden, and I’m too heavy to forge ahead, the hand of God lifts me and leads me on. My journey is incredibly hard, but immeasurably blessed by God. Impossible situations give God opportunity to shine and us an opportunity to trust. Miracles wouldn’t be miracles if they were possible. You know the phrase, “When life gives you lemons…make lemonade.” I’ll give you a new one. When life throws you dung, use it as fertilizer to grow your mustard seed of faith. It may move a mountain or grant you the strength to traverse over it.
This story is about building an unconditional faith in God even during the most grueling moments of my life. I’m finding beauty and hope along a rugged path I never would have chosen for myself.”

An Amazon review of the book, from Roland, stated:

“Amy Moser has endured more pain and suffering than anyone should ever have and all because of one medication for a mild infection. Her heart for God and her iron clad faith in His goodness and mercy have kept her going for her devoted husband and her children. I have never read a stronger testimony about the power of prayer and an unwavering faith. This is a very important book because of the warning about Cipro and the other drugs in its category and how catastrophic the side effects can be. But more importantly, seeing her faith as she describes dealing with the truly awful things happening to her formerly healthy body is a gift to us all. Read this book. Learn more about the side effects of these dangerous drugs. They are horrifying. Then say a prayer for Amy Moser and all the others suffering because of these drugs.”

Both books are generously and thoughtfully written. They describe journeys of hope and faith, and they are gifts to those who read them. I hope that they help you through your journey through fluoroquinolone toxicity as well!

 

A Letter About How to Get Through Fluoroquinolone Toxicity

A few months ago I received an email from a floxed individual (whom I’ll call “T”) that really succinctly and perfectly summed up what I’m trying to convey with this web site. I asked him if I could share his message and he gave me his blessing. This is what he said:

In your first Floxie Hope Podcast, you said you wanted to change the world. I just wanted to let you know that you changed my world. I suspected that my symptoms were caused by Cipro, but I wasn’t sure until I found your website. All of the stories sounded so similar to mine. So much suffering, and nothing the doctors could do about it.

I read your posts and your e-book eagerly, trying to figure out what I could do and what I could expect. I learned a lot and followed a lot of suggestions, trying to find what worked best for me. Throughout my struggles, several things you wrote or posted stuck with me and helped me get through, including the following.

Stay alive – This seems obvious, but it’s not. There were times during the dark days, when I was at my worst, that suicide seemed like the most obvious choice. I knew I could not endure the life I was living for very long, and I was a burden on my wife. It was her that kept me going through those times. I wanted to see if I could get better so I could be there for her when she needed me, and do the things she needed me to do.
Keep going – This was difficult, because every nerve in my body was telling me to stop. It took a lot of effort and will to keep moving, but I knew it was important, so I did what I could.
Nothing is permanent – It was terrifying to think that the suffering I was experiencing could continue for the rest of my life. When I stopped and thought about my symptoms, I realized that they were very dynamic and were changing all the time. Hopefully, they would change for the better.
Patience and hope – In reading the recovery stories, the two most common things that helped people were time and a positive mental attitude. I kept telling myself and those around me that I would get better. There were times that I didn’t believe it, but eventually I did improve.

It has been almost 18 months since my last dose of Cipro. I can’t say I’m fully healed because I still have symptoms, but they are not nearly as severe as they were a year ago. My focus has shifted from hoping to coping, and I feel like I have my life back. I believe that if I keep up the healthy lifestyle habits I started, I will continue to improve. Thank you for all your encouragement, and for spreading the word about the perils of Fluoroquinolone antibiotics.

I have received countless lovely emails from people who have been floxed that have written beautiful messages to me. They are all appreciated! There’s something about T’s message that stuck with me though, and I wanted to share the message with you.

When I read T’s message I thought, “Exactly – that’s exactly what I’m trying to get across.” Staying alive, keeping going, realizing that our health status fluctuates, patience, and hope, are all so important in getting through the pain and suffering of fluoroquinolone toxicity. I even think that those things help with healing.

Thank you, T, for your lovely, kind, thoughtful, and generous message! I hope that others are getting those messages of hope from Floxie Hope too.

I also hope that T’s email, and this post, serve as a reminder to those of you who are struggling right now. Stay alive. Keep going. Nothing is permanent. Be patient. Have hope. Those things will get you to tomorrow, and tomorrow is a new, hopefully brighter, day. Continue getting to tomorrow, after tomorrow, after tomorrow – perhaps healing, recovery, coping, acceptance, change, relief, or whatever you seek, is in one of those tomorrows.

 

Hope Heals and Unites

Over the past 3.5 years, this site has morphed and changed, and it has accumulated a lot of valuable information. It started out as a place to tell stories of recovery from fluoroquinolone toxicity. Over time, it became a repository for hundreds of articles about fluoroquinolones, and I started to write posts that focused on research. Fluoroquinolone toxicity became a puzzle that I wanted to solve, and many of the posts on this site are about that detective-work. I went to Washington D.C. in order to advocate for change in how fluoroquinolones are prescribed, and I wrote about those experiences. With that, this site became an advocacy site, and changes to medical and pharmaceutical policies were put forth. This site has become a supportive community, and I am grateful beyond words for the hundreds of people who have contributed more than 15,000 comments to Floxie Hope. It has grown, it has morphed, it has become more substantial and more effective with each post, article, and comment. I’m proud of this little site.

Though all its forms and purposes add to its value, I think that the most important and useful thing about Floxie Hope is it’s core and original purpose–to be a place where people can share stories of healing, resilience, recovery, and, most importantly, HOPE.

Fluoroquinolone toxicity is different for each individual who experiences it. Some people have absolutely devastating reactions, while others get off more lightly. Everyone’s symptoms are different, everyone’s timeline is different, and what helps and hurts each person is different. Also, we all have different backgrounds, personalities, characters, and approaches to life and illness. No matter the severity of an individual’s illness, or personality, or approach to life (both optimists and pessimists, religious people and non-religious people, rich and poor, etc.), we all need, and benefit from, HOPE.

Hope is healing, and it is necessary for healing. It’s not the only factor in healing, and I don’t think that we should try to hope fluoroquinolone toxicity away without doing anything else, but it is a valuable component none the less.

I hope for recovery for all those who suffer from fluoroquinolone toxicity. I hope for change in how fluoroquinolones are prescribed. I hope for acknowledgement of the devastation that fluoroquinolones inflict on the lives of their victims. I hope for less suffering and more healing.

Can we all agree on that? Can we all agree that healing and recovery are valuable, and that they should be hoped for? Can we agree that too many people are getting hurt by fluoroquinolones, and that we should hope for change? I think that we can agree on those things. Hope unites.

There are differences in what changes people think should be made. Some people think that all fluoroquinolones should be taken off the market, others think that they should remain available but that their use should be restricted. Some people think that the pharmaceutical companies can and will discover a cure for fluoroquinolone toxicity (and all the other “rare” diseases and adverse drug reactions out there), while others see the pharmaceutical companies as the problem, not the solution. Some people think that the FDA should be abolished for not adequately protecting people from the harm that prescription drugs do, while others think that working with the FDA is the best way to enact meaningful change. Some people fight, some people forgive, some people do a combination of the two–they’re not mutually exclusive. Some people question all aspects of the pharmaceutical industry (including vaccines), others think that fluoroquinolones are a particular bad apple, but other drugs and vaccines are good and helpful. Some people warn against throwing the baby out with the bath-water, others want to burn the whole system down.

I have been many places on the continuum of opinions above. I can see the perspective of anyone who argues for any of those things. Though I try to err on the side of hope (and continuity–I’m not really a “burn the mother****** down” person, no matter how much I want change), I can even see the perspective of those who are angry, and who want to destroy the entire system that hurt them. Anger can even be seen as hopeful–hoping for change on a visceral, emotional level. The experience of getting floxed, and taking the time to really process my thoughts and emotions about all steps in the journey, has led me to be a more compassionate, open, understanding, and empathetic person. I see perspectives that I didn’t see before, and I understand and value them even when I don’t agree with them.

The floxie community is diverse, and we could focus on our differences. I don’t think we should though. I think we should focus on the things that unite us. Hope unites us. Healing and recovery unite us–no matter what form they take. We’re all trying to do our best to recover, and to make it through this crazy world we live in. We want our health and safety, and the health and safety of our loved ones, first and foremost. Acknowledgement and paradigm shifts are nice too. If we focus on our common goals and strengths, we can get further than we can if we focus on our differences. Hope unites and it heals. We all need hope.

May this site give you hope. May it bring people together. May it be a resource and a community. May you heal. May we all heal.

 

 

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