Monthly Archives: December 2019

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.

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Mitochondria Summit

I just had surgery (just a couple hours ago as I write this), so this post is going to be short and sparse. BUT, I wanted to let you all know that there is a summit about Mitochondria that is happening THIS WEEK (December 9-15). You can access it through clicking on the image above, or through THIS LINK.

Fluoroquinolones damage mitochondria, and have been shown to deplete mitochondrial DNA. More information about the damage done to mitochondria (the energy-producing organelles of our cells) can be found in these posts:

Study Finds that Ciprofloxacin Depletes Mitochondrial DNA

New Study Finds that Ciprofloxacin Depletes Mitochondrial DNA

More posts about how fluoroquinolones damage mitochondria can be found through doing a search for mitochondria on floxiehope.com, and through searching for “mitochondria” on the links & resources page where you can find media and journal articles about the effects of fluoroquinolones on mitochondria.

In their April 27, 2013 Pharmacovigilance Review, “Disabling Peripheral Neuropathy Associated with Systemic Fluoroquinolone Exposure,” the FDA describes the damage done to mitochondria by fluoroquinolones:

Ciprofloxacin has been found to affect mammalian topoisomerase II, especially in mitochondria. In vitro studies in drug-treated mammalian cells found that nalidixic acid and ciprofloxacin cause a loss of motichondrial DNA (mtDNA), resulting in a decrease of mitochondrial respiration and an arrest in cell growth. Further analysis found protein-linked double-stranded DNA breaks in the mtDNA from ciprofloxacin-treated cells, suggesting that ciprofloxacin was targeting topoisomerase II activity in the mitochondria.

The FDA Pharmacovigilance Report also notes that mitochondrial damage (and the ensuing oxidative stress that occurs when mitochondria are damaged) is related to multi-symptom, chronic diseases like optic neuropathy, neuropathic pain, hearing loss, muscle weakness, cardiomyopathy, lactic acidosis, Parkinson’s, Alzheimer’s and amyotrophic lateral sclerosis (ALS).

I am excited to hear what the mitochondria experts featured in the Summit have to say about healing mitochondria, possibly un-doing the damage done by fluoroquinolones, and maybe even how to prevent the diseases associated with damaged and depleted mitochondria.

One of the featured speakers is Dr. Terry Wahls, author of The Wahls Protocol, that has helped many floxies including Renee and Jamieson. You can read Renee’s story HERE and you can listen to her podcast HERE and you can read Jamieson’s story HERE. Dr. Wahls was also featured on The Floxie Hope Podcast and you can listen to her interview HERE.

I’m also excited to hear Bridgit Danner, LAc, FDNP discuss the effects of toxic mold on mitochondria, and to hear Michelle Sands, ND discuss the hormone-mitochondria connection, and to hear Jason Prall discuss microbiota-mitochondria communication, and to hear what many more wonderful speakers have to say about mitochondria.

I look forward to spending the next couple days relaxing, recuperating, and recovering from my surgery while learning lots about mitochondria.

I think it will be helpful for floxies, and give insight into healing our mitochondria. It’s THIS WEEK – please let me know your thoughts in the comments below. We can all learn together. 🙂

Floxed Friday – Why Don’t You Sue?

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: 

I’m writing this next to a large window and a view of falling snowflakes, gently floating down to the ground below, causing accidents and exciting skiers everywhere.

Skiing is a big, big deal for me. I learned when I was 4 years old in the middle of the woods in Upstate New York. My dad, a trophy-winning freestyle skier, known for his backflips and helicopters, gave me a pair of used thrift store Rossignols with the chickens at the top and gave me poles meant for a much taller child as we hopped over sticks and fallen trees together.

After racing on a team in high school and teaching skiing for 6 seasons, it’s easy to see that I’m enamored with the sport.

Skiing was and still is one of my favorite activities. When I was floxed, I couldn’t walk or hike for awhile. I was one of those floxies who crawled to the bathroom and lost 20 pounds in merely weeks.

I was no professional athlete floxie, but come winter, I was terrified that I would never ski again.

I was one of the lucky ones. While many floxies remain forever disabled, forever unable to walk again or run again, I got better and could ski again. To be fair, skiing is not a tendon-heavy sport, so it was easier to get back into it than, say, rock climbing or weight lifting or running or whatever other people do to stay fit.

I’m not bragging about it at all, but I was able to go backcountry skiing a couple days ago after we got a huge snowstorm and discussed my *former* disability with another skier I met there.

“Why don’t you sue?”

He actually didn’t ask me that question, but most people do when I talk about getting floxed. The answer is a complex one.

Many have tried and many have failed to win, including successful lawyers with floxed loved ones or doctors who have been floxed themselves. Lawsuits, including class action ones, have come and gone since the late 70’s, but fluoroquinolone antibiotics are still on the market because “there is enough warning for patients,” and “look at all those black box warnings!”

We disagree. We think that there needs to be much more education about Fluoroquinolone Toxicity, for medical professionals especially, but also better informed consent for patients.

It’s easy to blame the doctor who prescribed the antibiotic, but the fact of the matter is that many doctors are not adequately warned of the risks themselves. Doctors, like Mark Ghalili, DO, have been floxed. If that’s not an example that they are not properly informed, I don’t know what is. Today, Fluoroquinolone Toxicity is regularly taught in medical schools all over the USA, but I want it to be a mandatory lesson.

It’s regular practice for pharmacy technicians to remove the lists of warnings and pamphlets about the drug in order for it to be “easier” for patients, or so they say.

Who is to blame, really? Is it the drug itself? The drug had no intention. It’s an object, a creation. Is it pharmaceutical companies? Pharmacists? Investors?

Many floxies choose to blame themselves. “I shouldn’t have taken that drug,” they lament. “It probably happened because I’m too old, I was too sick, I took ibuprofen for a headache, I didn’t read the pamphlet, I have the MTHFR gene, I didn’t Google it, etc. etc. etc.”

It’s easy to blame the victim, even when the victim is never at fault . . . so who is to blame?

Instead of focusing on the blame, I’m focusing on solutions. Our team is focusing on how we can end this floxie epidemic once-and-for-all, with adequate educational campaigns and, hopefully, a huge, awesome documentary. Let us know if you want to help with the campaign and we’ll add you to a list for when the time comes.

Look out for YET ANOTHER podcast (originally recorded in June, I think!) coming out next week. We talk about how I became a filmmaker and get a little more into what it’s like to work in the film industry.

Have a great weekend and thank you for your continued support!

Best,

Michelle
Floxie, Director, and Producer of ‘Floxed’
#nonewfloxies #floxeddoc

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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.

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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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