Tag Archives: healing

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!

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Writer’s Block, Advocacy Works, Getting Stronger, and Rivers Full of Antibiotics

I am having horrible writer’s block, and I haven’t thought of a thing to write for floxiehope.com in a while. I apologize for the neglect, but I’m really struggling with finding the time, energy, and motivation to write about this very important topic.

This post consists of the few FQ-related thoughts that have been running through my brain lately, but it’s not a very fluid or comprehensive post, and I apologize for that.

If you are interested in helping me to keep this site active and relevant by writing a guest-post, I would greatly appreciate your help! Here is a link with info about writing for Floxie Hope:

https://floxiehope.com/2017/12/07/write-for-floxie-hope/

If you have topic requests that you would like me to write about, I am open to suggestions. Please don’t hesitate to contact me.

*****

I have been meaning to write a post about the recent finding that most of the planet’s rivers are polluted with antibiotics. This is a topic that deserves its own post, but I haven’t gotten around to it yet. Anyhow, here are some articles about this awful travesty:

  1. The Guardian, “World’s rivers ‘awash with dangerous levels of antibiotics: Largest global study finds the drugs in two-thirds of test sites in 72 countries
  2. CNN, “The world’s rivers are contaminated with antibiotics, new study shows
  3. National Geographic, “First global look finds most rivers awash with antibiotics: Almost two-thirds of the rivers studied contained enough antibiotics to contribute to the growing problem of antibiotic-resistant bacteria.

Nothing about this is okay. Rivers have microbial communities that need to be alive for the health of the river and all the life within it. Killing bacteria throughout a river ecosystem is wrongheaded and likely horribly consequential for all the life in the river. As people ingest the water from the river, they are getting dosed with antibiotics, some of which are fluoroquinolones, and thus increasing their risk of suffering from fluoroquinolone toxicity and other adverse-reactions to antibiotics. Constant low-level ingestion of antibiotics is horrible for the human microbiome too, and microbiome destruction and imbalance is linked to many diseases. And, of course, low-level constant dosing of antibiotics leads to antibiotic resistance (the main problem that these articles focused on). It’s awful and tragic and depressing.

*****

On a happier note:

I went on a hike this weekend with my Dad and a couple of his friends. One of his friends mentioned that her 90-year-old father was saved from getting floxed because she was aware of the dangers of fluoroquinolones and told the doctors in no uncertain terms that they were not to give her elderly father these dangerous drugs. She was aware of the dangers of fluoroquinolones because of my advocacy efforts, and it felt really good to hear that from her. We know each other through my dad, not through any of my patient-advocacy work. Still, she heard and she listened, and she kept her father away from these dangerous drugs. One person at a time – the word is getting out and people are listening. Keep posting about the dangers of fluoroquinolones. Keep screaming about the damage these drugs have done to you or your loved ones. People are listening.

Here are some posts on both spreading the word about fluoroquinolone toxicity, and people listening:

  1. Friends Don’t Let Friends Take Fluoroquinolones: Four Stories
  2. Keep Banging That Drum

*****

I have been hiking a lot lately. Though I have been on dozens of hikes post-flox, something has shifted recently. I am strong again, and I’m capable of getting stronger quickly. Strong and capable of building muscle easily and quickly was how I described myself before I got floxed. Cipro made me feel weak and incapable, and I certainly didn’t describe myself as strong post-flox. After I recovered from the acute phase, I could move and exercise moderately, but I never felt like I was increasing my capacity or getting stronger. Lately, I have returned to feeling strong. I went on two pretty intense hikes this weekend (both about 5 miles, with a significant amount of elevation gain), and I felt strong during and after both of them. I have been doing after-work 50-minute hikes lately that have been getting easier and easier. It feels really good to not only be capable, but to be strong and fit. I didn’t feel that way for a very long time.

As always, I mention these gains not to brag or to make light of the horror of fluoroquinolone toxicity, but in hope that my recovery gives you hope for your recovery.

Love and hope for recovery for all of you!

Hugs,

Lisa

*****

 

 

NY Resolution to Heal My Gut

Seven years after I got floxed, and 5.5 years since I wrote my recovery story, I am still doing well. I am working at a job that I enjoy, I am in a good relationship, I can hike, bike, swim, and otherwise move my body, I have my reading comprehension and intellect back, my energy level is decent, and my autonomic nervous system generally operates as it’s supposed to. I feel good, and I’m living a good life. As I’ve said many times before, I hope that my recovery gives you hope for your healing.

With it noted that I’m generally healed, and that I feel good in most areas of my life, I’m going to confess that…

My gut is a mess, and I am worried about it.

I have no idea whether my gut issues are from being floxed or not. GI tract problems weren’t part of my initial floxing–I didn’t have any gut issues until recently. But in the last year(ish), my gut has started to have… issues. Unfortunately, there is no way to describe GI issues without describing bowel movements, so here goes – I haven’t had a normal textured poo in ages. It has been at least a year. TMI? Sorry.

Poorly formed stools are definitely a sign of inflammation and other gut issues, and, despite the fact that I feel generally okay, I’m concerned about my gut health.

I want a gut that doesn’t hurt every day, that forms healthy-textured poos, and that I don’t worry about. I don’t want to be concerned that I’m developing IBS, or crohn’s disease, or that I have c-diff, or anything else. I’m guessing that I don’t have any of those things, and that I just have an inflamed gut, but I don’t want that either. I want a healthy, happy, healed gut that feels good and operates entirely normally. I don’t think that’s too much to ask for. I also think that my gut is my responsibility, and that no one other than me can do anything about MY gut health.

It’s December 28th as I write this, and the beginning of the new year seems as good a time as any to commit to healing my gut. Here are some of the things I plan to do to heal my gut in 2019 (public accountability is good, right?):

Clean up my diet

When I first got floxed I ate only meat and veggies. I was scared of most foods, and I ended up losing weight and feeling worn-down because I wasn’t ingesting enough calories. After I got over the fear of food, I added fruits and other good things to my diet, and ended up eating as outlined in The Floxie Food Guide. But, after a while of feeling better, I stopped restricting my diet entirely. I didn’t eat much processed food because I’ve never liked processed food, but I ate whatever I wanted. Perhaps my GI issues are the result of my “anything goes” diet (or maybe my GI issues stem from something else like mold in my house or fluoride in my city’s water or a parasite – it’s hard to tell). Anyhow, it’s time to restrict my diet again with the hope of calming the inflammation in my intestines.

Step 1: Give up gluten. My husband has been on a bread-baking kick lately, so this will take some willpower, but it has helped so many people, and it seems like a logical first step, so, I’m going to go gluten-free and see if that helps.

Step 2: Give up legumes. I like beans, but they make me feel like crap.

Step 3: Limit dairy. I love dairy too much to say that I’m going to give it up, but I’m going to try to be cognizant of how much I eat and how it makes me feel and limit it.

I want to be able to sustain these changes, so these are the only things I’m going to do at first. If they don’t work, I’ll move on to a more restricted protocol – probably something close to The Wahls Protocol because it has helped so many fellow “floxies.”

I’ve noticed that oatmeal makes me feel better generally, so I’m going to eat more oatmeal. I’ve also noticed that spicy food tends to make me feel worse, so I’m going to limit them even though many spices are supposed to be anti-inflammatory.

Cut the coffee and alcohol

This is a no-brainer, right? No explanation is necessary as to why these need to go in order for me to heal my gut. It’s hard though, so, here’s my public accountability.

Note that the coffee I drink is decaf. I haven’t been able to tolerate caffeinated coffee post-flox.

I really like both coffee and alcohol, and this is going to be tough. I’m only committing to cutting down on them, not to completely giving up either, but I can commit to cutting the coffee by 50% and the alcohol by 80%.

Eat probiotic foods

Sauerkraut and kimchi, here I come. Luckily, I like both.

Meditate, breathing exercises, eat mindfully, and otherwise stimulate the vagus nerve to heal the gut

Our guts are connected to our brains via the vagus nerve, and stimulating and toning the vagus nerve through meditating, breathing exercises, mindfulness, and other activities, can heal both the gut and the brain.

Here is an interesting post about how a guy healed his IBS through stimulating his vagus nerve through gargling: How I Cured My Irritable Bowel Syndrome.

As I was going through the early stages of my fluoroquinolone toxicity journey I was really good about meditating, doing breathing exercises, going to the chiropractor and/or acupuncturist, and doing other things that stimulated my vagus nerve. I think that these things helped me to heal. They were part of my healing journey, and I recommend them to others because they are healing for the body, mind, and spirit, and because they stimulate the vagus nerve and trigger the release of acetylcholine. Like watching my diet, conscientiously doing activities that stimulated my vagus nerve fell to the wayside as I healed. I felt good, so I didn’t need to do breathing exercises to feel better. But, I think that all the vagus nerve healing exercises were helpful for my gut when I was doing them, and that they’ll be helpful for my gut if I do them again.

Shoot, I wrote a book about healing the vagus nerve – I should make the time to practice what I preach.

Step 1: Meditate daily

Step 2: Swim weekly – it forces breathing exercises, and movement is good for the vagus nerve.

Step 3: Eat mindfully

Step 4: Gargle and/or hum daily

 

Those are my resolutions, and I hope that they result in a happier, healthier gut.

I’m open to suggestions for gut healing. Please feel free to comment below to let me know what has helped you to heal your gut. As you may gather from the post above, I am not willing to go on a super-restrictive diet unless/until all else fails, but I am willing to hear suggestions. I’m also open to trying supplements that heal the gut including aloe juice, collagen, bone broth, probiotic supplements, etc. If you have any recommendations based on personal experience with gut-healing supplements, please comment below.

Whenever someone asks in the forums about how to heal from fluoroquinolone toxicity, someone always answers, “heal your gut.” They’re right, of course–but it’s easier said than done. There are people in the “floxie” community who are much more better about having a “clean” diet than I am who still struggle with GI issues and other symptoms of fluoroquinolone toxicity. I’m hopeful that my modified “clean-ish” diet will help my gut to heal, and that the other things mentioned above help too. I want to acknowledge though, that “healing the gut” is not simple and that there isn’t a single answer for how to do it. I’m hopeful that the steps noted above will help me, and that I’ll have a healthier, happier gut in 2019 than I did in 2018.

*****

 

 

 

 

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.

 

Autonomic Nervous System Dysfunction from Cipro, Levaquin, and other Fluoroquinolones

Many symptoms of fluoroquinolone toxicity involve autonomic nervous system dysfunction.

The autonomic nervous system (ANS) regulates bodily functions such as the heart rate, digestion, sweating, salivating, respiratory rate, pupillary response, urination, sexual arousal, and certain reflex actions such as coughing, sneezing, swallowing and vomiting. The ANS also controls the balance between the parasympathetic (the “rest and digest” or “feed and breed” system) and the sympathetic (fight or flight system) nervous systems.

Many fluoroquinolone toxicity victims/”floxies” (those who have been poisoned by Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin, Floxin/ofloxacin or other fluoroquinolone antibiotics) struggle with:

  • Digestive dysmotility
  • Either sweating too much or too little
  • Increased heart rate / racing heart
  • Breathing difficulty / air hunger
  • Increased frequency, urgency, and pain with urination
  • Sexual dysfunction
  • Loss of libido
  • Dry mouth and dental problems
  • Dry eyes and vision problems
  • Adrenal dysfunction and fatigue
  • Lightheadedness
  • Loss of balance
  • Anxiety
  • Difficulty regulating blood-sugar levels

ANS dysfunction is also common among those with POTS/Postural orthostatic tachycardia syndrome (“The hallmark sign of POTS is a measured increase in heart rate by at least 30 beats per minute within 10 minutes of assuming an upright position”), EDS/Ehlers–Danlos syndrome (a grouping of genetic connective tissue disorders), and MCAS/Mast cell activation syndrome or MCAD/mast cell activation disorder (an inflammatory immune system disorder that leads to many multi-symptom, chronic illness). ANS dysfunction is also a symptom of each of these illnesses.

Fluoroquinolone toxicity symptoms mimic and overlap with those of POTS, EDS, and MCAS/MCAD. All these disorders are multi-symptom, chronic illnesses for which there is no cure. In addition to causing ANS dysfunction, fluoroquinolone toxicity, like EDS, causes connective tissue damage, and like MCAS/MCAD, fluoroquinolone toxicity involves immune system dysfunction. There is significant overlap in symptoms, and maybe pathology, between fluoroquinolone toxicity, POTS, EDS, and MCAS/MCAD.

You can find many examples of ANS dysfunction (and other symptoms of fluoroquinolone toxicity that overlap with symptoms of POTS, EDS, and MCAS/MCAD) in the stories of fluoroquinolone toxicity on https://fqwallofpain.com/, http://www.fluoroquinolonestories.com/, https://www.facebook.com/groups/floxies/ and here on https://floxiehope.com/. Personally, I experienced several ANS dysfunction symptoms, including digestive dysmotility, increased heart rate, dry eyes, loss of balance, anxiety, adrenal fatigue, difficulty regulating blood-sugar levels, and I didn’t sweat for years after I was hurt by ciprofloxacin.

Most of my ANS dysfunction symptoms, along with all my other fluoroquinolone toxicity symptoms, have improved.

The thing that helped to improve my digestive motility most was supplementing hydrochloric acid (HCL). I think that probiotic supplements and foods, meditation, and time also helped to heal my digestive tract.

A Chinese herbal supplement called suxiao jiuxin wan helped to calm my racing heart. I think that acupuncture, stress reduction, and time also helped.

I can’t pinpoint anything specific that cured my dry eyes, inability to sweat, or loss of balance, but those symptoms have all subsided with time.

Anxiety is common among “floxies,” and it can be severe. The post, Treating Fluoroquinolone Anxiety, goes over some suggestions as to how to deal with it. Magnesium and uridine supplements helped me to get through fluoroquinolone-induced anxiety, and those supplements have helped others too. In addition to reading Treating Fluoroquinolone Anxiety, I also suggest reading some of the recovery stories from people who have recovered from fluoroquinolone toxicity anxiety, especially Marcela’s Story, Ruth’s Story, and Nick’s Story.

I still struggle with adrenal fatigue and difficulty regulating my blood-sugar. I tend to feel better when I reduce my stress levels, avoid caffeine, avoid alcohol, and cut out sugar. I’m imperfect about those things though.

ANS dysfunction, and the diseases associated with it (fluoroquinolone toxicity, as well as POTS, EDS, MCAS/MCAD, etc.) are serious, and often the symptoms of these diseases are severe and life-altering. They are not trivial, and there is no easy or simple “cure” for ANS dysfunction or any related diseases.

With the severity of ANS dysfunction and related diseases noted, I’m going to make a suggestion that I hope doesn’t seem too trite:

Love, connection, community, laughter, and peace can all help to heal the autonomic nervous system. Meditation and breathing exercises are helpful too. Anything that you can do to bring love, connection, community, laughter, and peace into your life will be helpful in healing your autonomic nervous system.

Before you accuse me of being too hippy-dippy, hear me out on the logic behind suggesting that love and peace are healing. When you are stressed, or when you feel unsafe or threatened, your sympathetic nervous system–the fight-or-flight system–is activated, and subsequently, your digestive system shuts down, you either sweat profusely or stop sweating, your heart races, your breathing becomes shallow, etc. You have an acute moment of ANS dysfunction. For most people, this situation resolves itself as soon as the stressful moment passes, and the parasympathetic nervous system is re-activated. However, people with ANS dysfunction (whether it is caused by fluoroquinolone toxicity, POTS, EDS, MCAS/MCAD, or something else), get “stuck” in a state of sympathetic nervous system activation and parasympathetic nervous system disengagement. Love, connection, safety, community, laughter, peace, meditation, and more, activate the parasympathetic nervous system, and shut off the sympathetic nervous system that is shutting down your ability to digest food, have sex, see clearly, etc. Activation of the parasympathetic nervous system helps to relieve symptoms of sympathetic nervous system overdrive, and helps to relieve symptoms of ANS dysfunction.

Exercises and practices that activate and heal the vagus nerve–the long nerve that connects your brain to your digestive tract and various organs, and controls your autonomic nervous system–can also help to heal your ANS, and relieve symptoms of ANS dysfunction. The post, Hacking Fluoroquinolone Toxicity via the Nervous System, goes over the connections between the vagus nerve and fluoroquinolone toxicity, and the post, 32 Ways to Stimulate Your Vagus Nerve (and Symptoms of Vagal Dysfunction), goes over some ways that you can stimulate your vagus nerve, which activates the parasympathetic nervous system, and reduces symptoms of ANS dysfunction. Love, laughter, connection, breathing exercises, acupuncture, etc. help to activate and stimulate the vagus nerve.

ANS dysfunction is complex, and it is not an easy thing to fix or “cure,” and I hope that my suggestion of love and stress-reduction as helpful in symptom alleviation isn’t seen as trite or dismissive.

I wish that ANS dysfunction, and the symptoms associated with it, were more acknowledged as symptoms of fluoroquinolone toxicity. They are serious, severe, and cause significant pain and suffering. Even though I am suggesting that peace, love, and meditation are helpful (they are), they are not simple cures that can be implemented in a short period of time. They are processes and practices, and despite doing their best to meditate regularly, love heartily, etc. many people are still very ill with fluoroquinolone toxicity, and other ANS dysfunction diseases. Neither peace nor love are cures for multi-symptom, chronic, illnesses like fluoroquinolone toxicity. Of course love and stress-reduction are helpful, but they’re not cures. We need more cures… and love… and acknowledgement.

 

 

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!

 

Are you going to heal?

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

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

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

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

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

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

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

Hope is really, really, important.

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

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

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