Tag Archives: floxed friday

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

*****

Why All Recovered Floxies Are Only 99% Better

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: 

It’s hard to bounce back from Fluoroquinolone Toxicity Syndrome. In fact, many people never do. For those who do, you may ask, How do you feel? Are you back to normal? Are you at 100%?

I don’t know a single floxie comfortable with saying they are 100% better. I never have. I also don’t think it’s possible to be “back to normal” or to who you were previously when something like this happens to you.

It’s traumatic. It changes your perspectives on life, on the medical system, on what the heck an antibiotic is, on what you put in your body, and the significance of everyday things. How can you ever be back to who you were, especially when you come back from a horrifying disability?

And no, rarely anyone can say they are 100% better because flare ups happen. Some symptoms never go away. Even if you feel good for years, one day you wake up with the worst chest pain in your life and you wonder, “Is this an aortic aneurysm?”

EBV and Nerve Damage:

I felt this way more recently with the onset of Epstein-Barr virus, which affects approximately 90% of the population, commonly known as mononucleosis or “mono,” and going back to a lot of the same supplements I took every day for years when I was at my worst.

I’ve been dealing with numbness in my hands again and it’s horribly frustrating. This came up after taking cacao, a neurostimulant, and it made me wonder, Are my hands getting better or worse?

A thing we floxies say is that “healing comes in waves.” Really. You’ll feel a symptom and it may come and go over the matter of a few days or weeks or months before you start to feel it get better. Maybe my long-time nerve damage in my hands is going through a healing process again thanks to the cacao or maybe it’s getting worse. I’ll never know and there is probably no PhD, no expert on Planet Earth, who has the answer to that question, so I just have to wait it out like everything else.

So for now, my pee is bright yellow all thanks to high levels of b-vitamins in my system, you know, to stimulate nerve healing, mitochondria healing, and all that stuff. Amy Moser mentioned in our interview that it takes about a month for one inch of nerve to heal and that her nerves are forever damaged after 8 years, so she believes.

Who knows?

What’s next for the Floxed Team:

We have awesome news to share.
We’re finally all meeting in Los Angeles to shoot some of our bigger interviews (shh) with some big researchers and medical professionals in the field next month.

I’m very excited since LA was my home when I was floxed and I can’t wait to meet some of these people I’ve only spoken to online or over the phone. I’ll be meeting even more friends/floxie family while we’re out there and this is my first time back home since getting floxed.

We’re also applying to more grants and we feel very positive about them, especially one that particularly focuses on female filmmakers making films about disability awareness (heck yeah we are).

***Wish us luck and please cross all your fingers and toes that we can get some of these grants. It would push the process along much faster***

Have a great weekend!

Best,

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

 

Floxed Friday – Levofloxacin in the Hospital

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 almost missed the Floxed Friday update this week because for the past few days, we have been applying to grants to finish post-production (and scheduling the rest of production – very exciting!) and I’ve been tending to my grandmother with her recent dementia episode.

Because of this, I’ve been in-and-out of the hospital, working from my phone. After getting floxed myself, I had PTSD, triggered any time I entered a hospital or even thought about a hospital. If you haven’t read my floxie story, it’s here, but TL;DR: (“too long, didn’t read” for those of you unfamiliar with internet culture), I had a horrendous experience admitted to one of the worst hospitals in Los Angeles while neurotoxic. Thanks to a ton of work with an amazing PTSD therapist, I am no longer triggered by hospitals. Still, it isn’t fun for anyone to spend three days in-and-out of one.

While waiting for a prescription antibiotic the other day (yes, I checked – it wasn’t a fluoroquinolone), I overheard someone at the window say “levofloxacin” to another patient. Although I’m not afraid of hospitals, anything with “-floxacin” makes my heart beat a little faster. I immediately questioned what to do.

Should I say something? We are in a hospital, it could be prescribed appropriately, but outpatient? Would saying something change anything or just make things worse? Would they believe me? Is it too late anyway? I didn’t even see who it was.

Sitting with my uncle, who had previously told me that a coworker of his takes Cipro regularly “with no side effects” and yes, he did tell him what happened to me, I figured that saying anything (which would violate HIPAA anyway) may not matter at all, so I sat in silence, impatiently tapping the chair. I’m already doing something. We’re making a film about this. It’s okay. They are explaining the side effects. Relax.

It’s frustrating to feel helpless in scenarios like these, especially considering you don’t want to be seen as the “crazy person” yelling at a complete stranger, telling them about that one drug that ruined your life with words like “mitochondria damage, tendonitis, and neurotoxicity,” even if that’s the first instinct. Yelling, making scenes, and applying a sense of urgency to your tone rarely makes anyone listen. Dare I say, it may hurt the cause.

Thankfully, during an interview with Dr. Joe Ketcherside, MD last week, we discussed possible solutions to end antibiotic misuse once-and-for-all. I want to tell you guys everything we discussed because as a former neurosurgeon, Joe has a lot of experience with antibiotics and a passion for change. He had a lot to say and even gave me a bit of hope. However, you will have to wait until the film is out!

Until then, we will be searching for funding so we can finish this thing and I will still visit hospitals regularly… unfortunately. If you would like to help in any way, feel free to email us.

Have a great weekend!

Best,

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

******

 

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: 
_____________________________________

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’

*****