Monthly Archives: June 2019

Floxed Friday – Oculomucocutaneous Syndrome

Every Friday Michelle Polacinski, a Floxie as well as the Director and Producer of ‘Floxed,’ sends out a newsletter to those who have subscribed to the ‘Floxed’ newsletter. The Floxed Friday updates are always interesting and thoughtful, and Michelle has given me permission to share them here. 
If you would like to receive the Floxed Friday updates directly from Michelle, please subscribe to the Floxed Documentary email list. You can subscribe through THIS LINK. Subscribing also helps Michelle to gain funding for the Floxed Documentary, and she doesn’t send out spam. 
The following was written by Michelle: 
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Oculomucocutaneous Syndrome

I was transferring footage from one drive to another and scrolling through Instagram when I realized that I could use my time in much better ways, so I picked up Ben Goldacre’s ‘Bad Pharma.’

I’ve been reading this book on-and-off since I started making ‘Floxed’ at another floxie’s recommendation. Dr. Ben Goldacre has produced Ted Talksand traveled around the world explaining to the public how and why large pharmaceutical companies can trick doctors with marketing tactics, but also how doctors can mess up… and how that’s normal… and sometimes, yeah, sometimes it’s deadly. Whoops.

Dr. Goldacre started this journey after he misprescribed drugs to one of his patients and hurt his patient even though he followed the information he received about that drug to a tee. How could he, upon following all the Good Doctor rules, hurt his patient?

This topic is long, confusing, and it’s understandably arduous to research and understand it all. Goldacre has written multiple books on what he has learned in his research and I’ve only gotten through the first part of ‘Bad Pharma,’ which is 100 pages long and currently chock full of highlights, underlines, and various annotations.

This particular thing caught my eye just now: Oculomucocuaneous Syndrome. This particular syndrome isn’t just an illness that comes on randomly nor is it a virus or some kind of disease. No, it’s actually what Goldacre describes as a “horrific” multi-system side effect of the drug ‘practolol.’

Practolol was a beta-blocker drug used for heart problems that had a side effect in humans which didn’t occur for the animals they tested on first, which apparently occurs very rarely. So, what is Oculomucocuaneous Syndrome? He left it at “horrific,” so I had to find out.

No, it’s nothing like Fluoroquinolone Toxicity Syndrome other than the multi-system syndrome inducing part. It consists of keratocunjunctivitis sicca, which is dry eye syndrome. The Wikipedia article showed a picture of someone with blue sclera, but it’s actually just a dye they used, so it seemed more horrifying than it actually is. It also consists of various scarring and something called metaplasia, which is the transformation of one type of cell into another type of cell (WOW what), and the shrinking of a different part of the eye.

According to this PubMed article about the syndrome, 3 patients had significant vision lost and many also lost their ability to produce tears. So that is definitely horrifying, but Fluoroquinolone Toxicity Syndrome is just as if not more horrifying, so why wasn’t it immediately pulled off the market like Practolol?

If you’re interested in how scientific studies and drugs work, I highly recommend grabbing a Ben Goldacre book from your local library. These books are very dense, but they’re an interesting read.

Have a great weekend!

Best,

Michelle Polacinski
Floxie, Director, and Producer of ‘Floxed’

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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.

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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.

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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

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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

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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.

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