On this episode of the Drugwatch Podcast, our guest is filmmaker and artist Michelle Polacinski. After taking the fluoroquinolone antibiotic Cipro for a urinary tract infection, Polacinski began to suffer from what friends and family called a “mystery illness.”
It started with numbness in her right arm. She dismissed it as a simple pinched nerve from sleeping in the wrong position, but the symptoms began to progress. Soon, she lost feeling in her entire body.
“I had that numb arm for three days, and then the left arm went numb. Then, both of my legs … my brain was also foggy. I couldn’t really think straight. I would talk really slowly … and that was really scary,” Polacinski said.
Her primary care physician told her the symptoms she was suffering came from antibiotics called fluoroquinolones that include Cipro, Levaquin and Avelox — popular and powerful antibiotics.
The urgent care that prescribed them for Polacinski’s UTI never told her the drugs could cause serious side effects, including nerve and tendon damage.
These drugs carry several black box warnings — the FDA’s most severe warning. In December 2018, the agency also warned the drugs could cause ruptures or tears in the aorta, the main artery in the body.
“For so long everyone thought I was dying, I had some mystery illness, and I was too sick to explain it to people, and people kept asking what was wrong with me,” Polacinski said.
She decided to share her story and found Facebook groups and websites like Floxie Hope. That was when she found out there were thousands of others like her. It angered her that these drugs were affecting so many people. Some were permanently disabled.
“I was really mad because I consider myself — or I had considered myself — pretty up-to-date on side effects and stuff and I just didn’t know an antibiotic could do that,” Polacinski said.
She knew she had to spread awareness about what she and others went through. But she had lost all her savings to medical bills and had to move in with her parents. She thought there was nothing she could do.
“Well, I thought, oh my entire career is over … everything was gone,” she said. “I didn’t know what to do, and I was like well, I have a camera, I have an education and experience and I know a lot about what happened to me, and I just, I wanted to educate people so they’re making informed decisions when taking drugs.”
The result is her upcoming documentary called Floxed. Polacinski hopes to educate the medical community as well as the public about the potential negative side effects of fluoroquinolone antibiotics.
Hi there, and welcome to another episode of the Drugwatch podcast. I'm your host, Michelle Llamas. On today's episode I've got a guest with me. Her name is Michelle Polacinski. She is a filmmaker and artist out of New York, and she's got a documentary that she's working on that came about because she had an experience with fluoroquinolone antibiotics. So she is on the phone with us today to talk about her experience and the documentary. So, welcome to the show, Michelle.
Thank you. Thank you for having me.
So let's jump right into it. Tell us about how you were exposed to fluoroquinolone antibiotics.
It was about three or maybe four years ago now. I was getting ready for work, and I noticed I had symptoms of a UTI. The last time I had a UTI, which was only one other time before that, nothing worked but antibiotics. I think I had Macrobid. I went into an urgent care before work and just wanted to get some antibiotics.
I guess I didn't really understand what antibiotics were at the time, but they gave me Cipro, and I got it right out of the urgent care. I didn't have to go to a pharmacist, it didn't have a list of warnings, there's nothing written on the bottle but Cipro.
And you mentioned that you had Cipro. For a lot of people that are listening that are not familiar with the term fluoroquinolone antibiotic, it's basically a class of really powerful antibiotics, and Cipro is one of them. We've got Levaquin, and Avelox, which are the most popular ones here in the U.S.
Like Michelle mentioned, they're very easy to get everywhere; pharmacists, urgent cares, they usually will just give them out without telling people a lot of things about them. And they're very commonly used for UTIs and a lot of minor infections. They're very powerful, so they're actually only supposed to be used for really strong infections, but we'll get into that more later.
You mentioned Michelle, that you didn't really know about these antibiotics. They just said, "Here you go, they'll make you feel better," like probably a lot of Americans do, right? You go in and they just give you what you get, and you trust your doctors. When did you start having some symptoms and making you feel like, "Hey, there's kind of something wrong with me here after taking the antibiotics?"
Well, first of all, I've never had a reaction to any medication in my life, especially antibiotics. So I just kind of took it and didn't really think about it too hard. But my first symptom that I actually didn't — I noticed something was wrong, but I didn't really seek any medical attention. I was just really, really tired for a few weeks after I took it. Just really tired. No amount of sleep could make me not tired. But at the same time, I was working for the Food Network at the time, I was always on set, working 12 to 16 hours a day, six days a week. It was really hard on my body.
The first symptom that I noticed was a month after I took Cipro, and I only took three pills of it. It actually didn't even work to cure the infection, so I had to take other antibiotics. But it was three pills, and a month later my right arm went completely numb.
Oh, wow. That was probably really scary.
Well, actually I just assumed it was a pinched nerve. You know, you sit on yourself weird, when you wake up or something and — the thing is, it happened at the end of the day, not after I was sleeping. I was moving around a lot. There's actually no way I could've gotten a pinched nerve, but I was just like, "It's probably a pinched nerve."
And most people do that, right. You bring up a good point there because you're not really thinking that it's the drugs that caused it. So, you're just thinking, "Eh, I slept wrong," or "I'm just tired from a long day," that you're kind of just explaining the symptoms away, right?
Plus, it's really difficult in the U.S. to get a doctor to see you and take you seriously. Especially as a woman, a lot of times they're just going to be like, "Well, it's anxiety, have a nice day," and you're sitting — and you waited for them for three hours, or got an appointment three months later. So that's another thing: I wanted it to go away on its own. I didn't want to see a doctor because it's so difficult. So I had that numb arm for three days and then the left arm went numb. Then both of my legs.
Wow. So this is a month, about a month after?
Yeah. And then once my whole body went numb, about four days into those numbness symptoms, and then it was my face and then it was the rest of my body. And then I had numbness for four months straight.
Oh, my gosh. So your entire body pretty much was numb?
Yeah. And they worried about peripheral neuropathy, which is the numbness of the hands and feet, sometimes just your fingers and toes, kind of tingling, that kind of feeling. But I had it through my entire body, and that wasn't my only symptom either.
Okay, if that wasn't bad enough, your entire body just goes numb. That's crazy. So, what else happened?
The tiredness just kept getting worse, so I had really bad fatigue, which now I know was due to mitochondrial damage from the antibiotic. So really bad fatigue, and then even though I was super numb, I also felt like it was difficult for me to stand because I was really tired. So I still went to work for the next few days, until my entire body went numb, and then I was like, "Okay, I think I'm going to stop."
And my brain was also foggy. I couldn't really think straight. Every time I spoke, it was really slowly, like this, and that was really scary. I had these crazy nightmares and a lot of floxies have these same nightmares. It's really traumatic, like horror movie style nightmares. And I'd wake up to panic attacks, which I haven't had before or since, which were super crazy, too.
And then I had the tendon stuff. I’d never had a rupture, but I had tendon damage throughout my whole body and I had pain in my elbows, in my wrist, in my ankles, in my shoulder, my rotator cuff, even behind my eyes, which was really scary, especially right before you're going to sleep, because there's that whole REM cycle where your eyes are moving back and forth, so that was really scary.
I had a little bit of vision loss, but that came back. So my vision came back fully, thank God.
When all this stuff was happening to you, of course, you still didn't really know, right, what was going on with you?
Yeah, and neither did my doctors. So when the numbness started happening a few days in, once the left arm went numb, I went straight to the ER. I was like, "Okay, this isn't a pinched nerve. This is something else." And my best friend's dad had Guillain-Barre. So that was my first thought, "Oh, maybe I have Guillain-Barre," which leads to paralysis, so that was very scary.
And so we did all the tests possible. I went to the ER three times and they actually didn't even take any tests. They just had me wait for five hours and then made me leave and pay $175 or something per visit. So, that was fun. And then I finally got an appointment with my primary care physician and he knew right away what it was.
This was after all this craziness. So, thank goodness for your primary care doctor.
Yeah, and that was a week after I started having the symptoms, but yeah, absolutely. I actually, a year later, sent him a letter thanking him for saving my life, because a lot of floxies aren't that lucky.
Some people never know what it is until three years later and they're already stuck in a wheelchair. Because there are things you can do to help your body heal from this. Which, if you don't have a diagnosis, you don't know what to do.
So when you finally talked to your doctor, how did he tell you what you had?
Basically, I had a list of, like 15 symptoms at the time. I wrote them all down in a notebook, because a friend of mine who has dysautonomia, so she goes to the doctors all the time, was like, "Great, write everything down in a notebook because they're going to take you seriously if you have a notebook." I was like, "OK, I'm bringing a notebook."
And my doctor, I kind of tested him out before I saw him. I had really bad experiences with doctors growing up. So I researched and found this doctor. He's wonderful. So I already knew him. I knew he was going to believe me, it's just really hard to get an appointment with him.
So once I finally got an appointment with him, he wrote down all my symptoms on that sheet that people — that the doctors lay on the examining table. So, he just wrote down all my symptoms on that, and it felt very Beautiful Mind-esque, I don't know if you've seen that movie.
Oh yeah. Scribbling all these things down there, and you're imagining he’s making all these awesome connections between them.
Yeah, yeah, and I was like, "Oh, I'm in good hands. That's great." But then he looks up at me after he's done writing whatever down, and he was like, "Have you ever taken Cipro?"
And I was like, "Yeah, but a month ago." I didn't — I was like, "It can't be that, it was a month ago." And he's like, "No, that can stay in your body for a while." He thinks it's up to six months, but other doctors will disagree or they also have no clue. But people do have reactions six months later. So it's not crazy.
So the FDA recently, only just recently, started really coming out with warnings that talk about how serious these symptoms can be, and the fact that they can be irreversible. So everybody that's been affected by any of these fluoroquinolone, they say they've been "floxed," and they call themselves "floxies."
In speaking to a lot of them, they have a lot of that same sort of experience that you've had, where they really are going from doctor to doctor to doctor, and they're getting all these strange diagnoses, because doctors don't know. Doctors will basically say to patients, "Hey, well, there's kind of this little bit of a tendon rupture issue, but it's only going to affect you if you're like 65 and older, and it's not a big deal."
And, and I hear so many people saying, "Oh, well it's really rare, so it's not going to happen to me," and in your case, you didn't get any warnings at all, is that correct?
Yeah, I didn't get any warnings at all, and all of those assumptions are untrue. It's actually insanely common, really difficult to get the right numbers, because only 1 to 3 percent, I think the statistic is, of people who have side effects report it to the FDA, so we don't even really have proper FDA reports.
And then a lot of people who do report to the FDA, if they're not writing the name of their doctor down, then it's just tossed out. But yeah, I didn't have any warnings, I had nothing at all. They were just like, "Here, take this. Take one," I think it was one a day, "make sure you eat food and drink water." And I remember when the drug didn't work, I called the urgent care back and I said, "Hey, this isn’t working, my UTI isn't going away at all."
Normally, I at least feel a little bit better day one of taking the antibiotics. And the woman on the phone said, "That's really strange, that's a really strong antibiotic." And I said, "Why'd you give me a really strong antibiotic for the first day of the UTI?" And she didn't respond.
Yeah, because — there was one famous doctor, and his name escapes me now, but when you read a lot of this literature, they compare it to using a machine gun to kill a mosquito. That's kind of basically what they're saying. These drugs are for anthrax, they're for serious infections where there are no other antibiotics to help.
And as we know, of course UTIs, sinus infections, which people also get them for, there's plenty of antibiotics that can treat those, right? So it's weird when they go to the big guns first. And I think that some of the other people that you've met in the community have said the same thing.
So now we talk about the community. Let's get into this. So, now you've had these symptoms and you're like, "What the heck? I can't believe I was given this antibiotic, not told anything about it." You started doing a documentary project. Tell me kind of how that came about.
Yeah, I guess I wasn't really all that angry because at first when this happened to me, I was like, "Oh, I'm just one of those rare people with a rare side effect to an antibiotic." But then my doctor told me to look it up, and then I started finding the community. So I found Floxie Hope, which is a website all about Fluoroquinolone Toxicity Syndrome, and I'm now friends with the person who started it.
She's also in my documentary; amazing, really smart, awesome person. I found the Facebook groups, there's a bunch of different Facebook groups on there, and learned there were over, I think, 11,000 people in one of the biggest Facebook groups, but not everyone's in there.
We're talking just one, because there are a ton of floxie Facebook groups.
Yeah, I think I'm in like 15.
You think there's even just a thousand in each of those smaller ones. It definitely doesn't seem rare, right? When you look at thousands and thousands of people, and this is all over the world, right? Let's be clear about that. It's not just here in the U.S.
Yeah, actually part of our documentary takes place in Canada. There are a ton of Canadian floxies and there's actually a whole Canadian activist group for floxies and they meet in Toronto every year and do an educational rally where they set up booths and teach passersby about fluoroquinolones and what they can do to you, just so people know the side effects.
Basically, I also have this blog that I've kind of stopped writing since I've done the documentary. But I wrote my story on there because for so long, everyone thought I was dying, I had some mystery illness, and I was too sick to explain it to people, and people kept asking me what was wrong with me, so I was like, "Oh my gosh, I'm just going to write it all out in one thing and then send it to people in a link."
Well, it didn't really go viral, but I had at least three to five people message me privately every single day after putting that up for a month. Like, "Oh, I saw your story, I was floxed, too. What did you do to help yourself get better? How are you doing now?" And it's just a constant influx of people.
After a few months, I just got really upset because this was happening to other people. I was really mad, because I consider myself, or I considered myself, pretty up-to-date on side effects and stuff and I just didn't know an antibiotic could do that. So I was like, "Well, I have to do something to educate people because I have all this information." And people had written books. Amy Moser wrote a book. She's also in the documentary. Lisa herself with Floxie Hope wrote a book, as well. A few other people wrote books about their experiences.
But the thing is, the only people who are reading these books are people who were already floxed, people who already had these reactions. I thought at the time, "Oh, my entire career is over." After working in Los Angeles, I had to move back in with my parents, and lost all my money to medical bills, all my savings, everything was gone.
I didn't know what to do and I was like, "Well I have a camera, I have an education and experience, and I know a lot about what happened to me," and I wanted to educate people so at least people are making informed decisions when they're taking drugs. And also, to inform doctors; a lot of doctors don't know about these side effects.
The reason a lot of them prescribe Cipro and Levaquin and Avelox for UTI's and sinus infections, is because they have tablets with — it's kind of like a SparkNotes, for prescribing. There's one called UpToDate and there's one called Epocrates. Epocrates is amazing because all the side effects are at the very top, and I love that.
But on UpToDate, which is way more popular, it's kind of like the iPhone of the doctor SparkNotes, basically at the very top, when you type in Cipro in UpToDate, it says, "Used commonly for UTIs." Or if you type in UTI, the first thing that pops up is Cipro. So, it's really not their fault. A lot of people didn't know these were so dangerous until more recently. We have like five or six black box warnings now.
And, unless you're somebody that's on the FDA website all the time, those warnings don't actually go out to the public. It's hard to find them. So, the average person isn't going to be searching FDA warnings all the time, right? And if the doctors don't know, then chances are patients aren't going to know, either.
Unless you're actively seeking any of this information, you're not really going to know. And when you're sick and you go to the doctor, most people aren't going to be thinking about, "Oh, what is this that you're giving me?" They just want to get better, right?
I think that's what happens a lot of times. And with antibiotics, especially if you've had surgery, or anything like that, you don't really have a choice.
One of my friends from college, actually after this all happened to me, she has Crohn's, and she had such a bad infection in her intestines that she woke up to an IV of Cipro on her arm, and she started freaking out and hit me up. And whenever anyone takes those drugs, I'm like, "Just take a ton of magnesium supplements." Just take a ton of magnesium supplements and hope for the best. And she didn't have a reaction. So there's definitely a place for fluoroquinolones, I think. Especially when it comes to those lifesaving things.
Sure. We don't want to say, "Wait. Let's ban them," right? We don't want to say that. And you did bring up a good point, we don't want to scare people. This isn't something that happens to everybody, but you should at least know that there is a risk, right?
Yeah. But there's also ways of preventing a reaction. There have been studies in 2007, they did it on mice, and you can prevent up to 80 percent of reactions if you take certain supplements a few weeks before you take the antibiotic. Which of course, who can actually predict when they're going to need the antibiotics?
We're talking about awareness and education. So, if there was one thing that you could tell people about these antibiotics, what would that be?
I guess, well definitely always look up any drug you take before you take it. If you know that you're getting prescribed a fluoroquinolone for really minor infection, definitely just ask your doctor for a safer alternative. Don't immediately blame your doctor and assume that they know everything, and they have to know about every drug ever. If they're not keeping up with everything, they're human.
And there's also that whole UpToDate factor. But also, someone once said in a floxie group — which I thought was really funny, but also a really, really great idea — if there's a support group for it online, just don't take it. I really like that. You know, look it up on Facebook, look up whatever drug that you've just been given on Facebook and see if those side effects really are rare. Because sometimes they are. Sometimes they are rare.
Sometimes those side effects that are written on the pamphlet or the internet or whatever, maybe they are rare, but for fluoroquinolones, they're not, and how are you going to know the difference? I think that's a really good rule of thumb.
Now you're trying to spread awareness though, at least, and try to inform people. So when we talk about educating the public, that's probably really the best way that people are going to be able to look out for themselves.
What's going on with the documentary now, and what can you tell people about what to expect from it when it does come out?
We want to bring this film into hospitals. We want to bring them to doctors, we want to bring them to hospital administrators, help them come up with a better protocol for fluoroquinolone antibiotics. Because I've seen these drugs ruin people's lives. If they were going to die from a serious infection, well then that's a risk that they ought to be able to make for themselves, and be educated on it prior.
But if it's for a minor UTI, everyone regrets it. No one's happy they took a fluoroquinolone. So I think that working with the medical system is really what we're trying to do and create positive change. Working with people to do it, not pointing fingers or anything. I mean, this just kind of got out of hand, and we're happy to help.
For your documentary, Michelle, you did not just interview patients, and that's awesome, there's plenty of patients there. But you wanted to make sure there was also some science and research in this documentary. Tell us about all the people that are involved in this project.
We're definitely very science-based. What's interesting with floxies, is a lot of us have to do a ton of research into biochemistry, even though a lot of us haven't taken a biochemistry lesson in our lives. So, I definitely wanted to include that part in the documentary, especially since it's also geared towards doctors and the general public.
So we're interviewing a doctor who is actually floxed himself and he got better, which is awesome, but has dedicated his practice essentially, to helping floxies and other people with chronic illnesses, which is really cool. We've also interviewed a researcher. We've also interviewed family members of people who lost loved ones to fluoroquinolone antibiotics, because a lot of people do die from these side effects. And it's unfortunately not super rare that that happens, either.
We've also interviewed a former pharmacy tech, so they talked to us about what happens behind the scenes in a pharmacy, and the other people who have worked in the pharmaceutical industry. Maybe going to interview some medical students, because I don't know if you know this, but they're teaching Fluoroquinolones Toxicity Syndrome in medical schools now.
Wow. That's amazing. That's amazing. That's actually great news.
Yeah, now I don't know if it's all medical schools, but after what happened to me, a few of my friends from college went to medical school and they contacted me, and they're like, "Oh my gosh, what's happening to you? What's going on? I'm really interested, I'm trying to be a doctor, et cetera." And I love that and I really appreciated that support, especially when a lot of people after they’re floxed just tend to hate the medical community because they were like, "Oh, my gosh, I can't believe this happened to me."
So having that assistance from my friends who are in medical school and having an incredible doctor who stood by me the whole time really helped me with that.
Thank you very much, Michelle, for all the information that you've given us and for sharing your story. Because, I like to tell people that so much of the awareness that comes out is from people coming forward and sharing what's happened to them. Because, like in the case of fluoroquinolones, or other drugs or medical devices that affect people, sometimes without those stories, people don't really understand it.
You know, we're, we're talking research and all this really complicated stuff, but when people share what happened to them and even give hope about, "Hey, you can recover from this," that’s really amazing. So, I want to thank you so much for being on the show.
Thank you for having me.
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