EPISODE 7
Fluoroquinolone Associated Disability (FQAD): The power of validation and human connections when health treatments harm
Meet Dana and Ferdi, who were brought together across continents by an adverse drug reaction to fluoroquinolone antibiotics (ciprofloxacin, moxifloxacin, levofloxacin and ofloxacin) that left them disabled. In spite of it all, they found love and the strength to assist other victims struggling with fluoroquinolone toxicity.
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Lee: Awareness is power.
Heather: And it can save your life.
Lee: Welcome to our podcast, “Know Risks.”
Heather: I’m Heather.
Lee: And I’m Lee. We’re two moms, a lawyer and a nurse, who were brought together by a misfortune. Both our children were harmed by adverse drug reactions.
Heather: The purpose of this podcast is to educate people on the risk of any health treatments you put in or on your body.
Lee: We feel if we’d been properly informed and been our own experts, our children would not have been harmed.
Heather: In today’s world, with medicines being incentivized for profits, you need to educate yourself. Know the risk of health treatments and it can protect yourself and your loved ones from being harmed.
After a severe reaction to fluoroquinolones and Macrobid, Dana Wold is now fighting to rebuild her body and her life after spending four years bedridden.
Dana: I experienced extreme weight loss; I lost 20 pounds within a matter of weeks.
Heather: Before Ferdinand Dirsch, or Ferdi, got sick, he loved going to concerts, skiing, and spending time in nature. After he had finished school in Germany, he was prescribed Moxifloxacin for sinusitis and developed a full range of serious and life-limiting side effects.
Ferdi: I had electricity running through my body and I had chest pain. I had panic attacks. I had severe panic attacks and paranoia.
Heather: Their story, which we will hear in just a few moments, is one of tragedy and hope, and is a testament to the flawed health system in the U.S. and in Europe.
So thank you for tuning in with us today. We hope that you get as much out of this conversation as Lee and I did.
[Interview begins.] All right. We are so pleased to have two guests with us today to share their story. Dana and Ferdi — am I saying that correctly? (Laughs.)
Ferdi: Ferdi, yeah. Perfect. (Laughs.)
Heather: I’ll get it right! They’re joining us today from Germany. Really interesting story behind this. Although they’re in Germany today with us, Dana’s mother, who is a true advocate for her — Lori — a couple years ago I got — I believe she emailed a reporter who did a story about what had happened to Shea and his horrific experience with fluoroquinolones, in his case Levaquin, and I got this email and she said she was in the neighboring town — we’re in a small community — that she was right next door but she had taken her daughter, Dana, to a doctor in California for issues from the effects of the fluoroquinolones she took, and we’ll talk about that today. But this doctor in California had actually told her to get in touch with me. I don’t know him personally but I think he uses some materials that I’ve generated on his website and in his literature, which is what this is all about. You know, spreading the word and having a support community to reach out to so that when your intuition — or as we’ve been calling it, hunch — is that you might have had an adverse effect, in this case to a fluoroquinolone, that you can be validated, because it’s so difficult and, you know, we’re going to hear a lot of these stories, but when you’re not getting that type of validation from your health care provider, sometimes even from families or others around you, it can be very difficult and really add to the stress and just the horrific experience of having a toxic reaction, especially to these drugs, which, you know, in my case these drugs were the drugs that, you know, proved fatal for my son and for Lee’s daughter, put her on just years of dealing with the effects of taking them.
So we’re so happy to have you two here today. I’ve never got to talk to Dana; I’ve always talked to your mother, but we’ve grown a friendship over the past couple of years, and a lot of the topic is about you —
Dana: (Laughs.)
Heather: — now about Ferdi. (Laughs.) So we’re just really excited today to hear your story. So I guess I’ll just, you know, let one of you start. I don’t — you know, I know what I’ve heard from your mother, you know, but would just love to hear it in your own words.
And Ferdi, I know how you two met and you’ve experienced these horrific effects too, so just want to hear from you both.
Dana: OK. I guess it’s hard to explain where mine starts because I have taken fluoroquinolones on and off since I was 12. I was first prescribed Levaquin at 12 years old, which I took that twice, and then I’ve taken Cipro at least five to six times throughout my life, and I had never connected the dots at the time that some of the issues I was having, you know, in my late teens, early 20s, could be related to taking these drugs. It was nothing that affected my life at the time. I was just having some worsening digestive issues, reactive hypoglycemic issues. I started getting chronic stiff necks in my 20s, which just seemed like something I shouldn’t be experiencing at that age; muscle twitching and some worsening anxiety and panic attacks that I was experiencing. But I was still very active. I never connected it to taking those at the time. I was a performing musician in Chicago. I was working out, you know, four to five times a week sometimes; I had my own dog-walking company and I lived in an apartment in Chicago. And then in December, December 23rd of 2017, I had a UTI, urinary tract infection, and I went into a CVS MinuteClinic, which was just a couple days before Christmas. I wanted to be feeling better for Christmas, and she prescribed me Macrobid; Nitrofurantoin it’s also called. And this, what I later learned, was basically just the nail in the coffin for me. I reached my tolerance threshold by taking fluoroquinolones so often for so many years. And then within a day of taking Macrobid I started noticing some very strange effects happening. I was having chills very bad. I started developing extreme night sweats. I had very bad digestive distress and then I started getting extreme bouts of vertigo — and I’m not talking like you feel a little dizzy; I’m talking about you feel like you’ve been on a spinning carnival ride for a half hour straight — that would just come out of nowhere when I would just be standing or sitting, and I had never experienced anything like that in my entire life. I started getting rashing on my face, and then a couple nights before New Year’s Eve, I was driving to a show, a concert that my band was playing in Chicago and I started seeing spots just when I was looking at the stoplight when I was waiting for it to change. It was very disturbing; it was almost like flashes of light and then I’d see spots everywhere, and then I noticed it when I was on stage I was seeing them everywhere. I can’t even really describe what it was like. And then at this point, I knew that something was seriously wrong and I went online and started searching for side effects of Macrobid and what I was reading was extremely disturbing and it sounded very similar to what I had going on, but then I also started reading things about lung scarring, that it can cause respiratory failure. So that was very scary for me to see, and that’s when I stumbled across the FQ Toxicity, where I started seeing images and videos of people in wheelchairs losing their ability to walk and I was just like, what am I reading? Like, this is caused from antibiotics? I’ve never heard of this. I’ve been taking this my entire life on and off. So that was so terrifying to see. And then I immediately stopped taking it, hoping within a couple days that it would just resolve since I thought if I stopped it, then it just wouldn’t continue getting worse. But it just kept getting worse from there.
A weak later I was running on the treadmill at the gym and I all the sudden started to feel sharp pains in both my shins and it felt like somebody was taking a sledgehammer to both of my legs. I immediately had to stop running. I felt like I was going to collapse. I couldn’t make it back to the locker room, barely to my car. And then a couple days after that, I was driving my car in the city and I all the sudden lost feeling in my arms and my legs while I was driving on the expressway. I had to pull over. I immediately took my phone and called my mom. I was completely panicking. I didn’t know what was happening. I felt like I couldn’t feel my entire body. My mom rushed to Chicago and she took me to urgent care where I of course presented what I had found with the side effects and said I recently took it and they said there’s absolutely no way that it can cause since you discontinued the drug; it has nothing to do with it. They ran all these tests. They said my blood work was completely normal and that there was nothing they could do. And then after that is when it just started continuing to get worse. I noticed I could no longer stay awake during the day. I was constantly in a coma-like state on the couch. I started experiencing hallucinations, extreme psychosis and paranoia, just nonstop, overwhelming fear, extreme digestive distress, like somebody had lit my intestines on fire is the only way I can describe it. I experienced extreme weight loss. I lost 20 pounds within a matter of weeks. My skin was burning. It felt like I was being burned alive or like someone was clawing at my skin with constant pins-and-needles feeling all over my body. I lost all strength in my arms and then I slowly, over the months, just lost all of my physical ability altogether. I had to quit my job. I could no longer drive. I had to move back in with my parents. I eventually was taking less and less steps. I just could no longer walk at one certain point, walk distances. I couldn’t hold my arms up to take a shower.
Heather: During this time frame were you getting — were you seeing doctors? It just sounds so much like my son’s story, I mean, just identical, you know, in terms of the trajectory of what you’re experiencing.
Dana: There really is just when you hear everyone’s story, there’s so many similarities just in what happened. I mean, even his and — I was going to a functional doctor, I started going to in March. He had no idea about fluoroquinolone toxicity but he was doing everything in his power to try to help me. I was taking so many supplements but just nothing was getting better; it just kept worsening. And my sister was getting married at that point and I — you know, I missed out on all of that. I couldn’t be a part of any of her stuff, and then I just barely made it to her wedding. I was able to go to her wedding in May of 2018. But then after that I started experiencing extreme breathing issues and that’s when it got to the point where my family said, we need to go get some serious help for this and then they started driving me to different places all over the country.
I had — I still have and I had extreme respiratory muscle weakness, which kept weakening, making it harder to breathe. I could no longer sing. And that’s when we started just going to different places and I had several treatments to have that done. And then when we got back from getting treatments, the issue just kept getting worse and that’s when I ended up going to the ER two different times.
I failed the pulmonary function test at two different hospitals. They said I had severe restricted breathing and generalized weakness, but they had absolutely no explanation as to why. They held me at a hospital in Chicago and then of course when they asked me what was going on, I always brought up — and I always knew it was from taking that. I didn’t know — it was nothing else. They thought maybe I was having a myasthenia gravis crisis, they thought I had lyme disease, but nothing ever showed on the tests. And then they started to send in the entire psych team of five or six people that were questioning why I thought this could still be from the drug when it had been, you know, 10, 11 months at that point since I took it.
Heather: Isn’t that interesting, too, that that’s the intervention when a patient is consistent with what they believe caused them to be, you know, feeling the way they are is that it’s an immediate entry into the mental health system.
Dana: Yes. And it was — I mean, they had five or six people come in. I was laying in the hospital bed; they were all standing around me and, I mean, they made me feel like I was just imagining all of it. They made my entire family feel like that.
Lee: Yeah, that’s so hard.
Dana: And just not even, you know — even if you don’t necessarily know what it is, not even taking the time to even — because it’s all there if you look it up online or just look into it. There are so many people that this is happening to. But just even the unwillingness to even acknowledge it or talk about it is just, you know —
Lee: You’re suffering so much and then to not be heard and somebody to take the time and there is — there was at that time, 2017, when you started to piece it together — and good for you for doing that — there was literature that supported that the reaction is often delayed and it continues long after you stop the medication, but that was my experience too was that the doctors don’t look at that and the first thing they do jump to, like Heather said and like you said, is maybe there’s something wrong with her; why is she thinking this? You know, it’s so hard.
Dana: It is.
Heather: “It’s all in your mind.”
Dana: And then, you know, that’s — I mean, that’s one of the hardest parts of this entire thing. And after that, you know, as sick as I felt — and every day I felt like I wasn’t going to make it another day; I just didn’t even want to go to the hospitals anymore. And then in December of 2018, that was the last time I sought any sort of treatment because there was just nothing anybody was offering or acknowledging, besides the couple doctors I did see that have treated patients successfully. But after that point —
Heather: With this issue?
Dana: Yes. But after that point, it was December of 2018, I became completely bedridden. I could no longer leave the house. I was in bed every day. I laid down to eat. I could barely eat and only tolerate a couple foods. I got down to 89 pounds. I had a bedside toilet. I couldn’t make it 20 feet to get to the bed. My mom and dad had to wash my hair with the device laying down on the bed. I couldn’t have any visitors. I had extreme sound and light sensitivity. Even people talking in the same room was too much stimulation for me. It continued with the psychosis, delirium, hallucinations. I started to get derealization and depersonalization where I didn’t even recognize myself. I felt like I was hovering over my own body, just looking down at myself. I felt completely detached from my own body. I had shakes, tremors, electrical zaps. You know, and my dad was working to support us and my mom was my full-time 24-hour caregiver. She, you know, signed over to be my power of attorney because everybody was frightened; we didn’t know what was going to happen. And yeah, I mean, I never would have got through it if it wasn’t for my family.
Heather: Yeah, she saved your life.
Dana: She did.
Heather: She certainly did because I don’t know if you had an opportunity to look at, you know, what happened in my family, but unfortunately, Shea did go into the mental health system, which is so interesting and since then and some — and for those listening really recommend Dr. Healy’s podcast. But it’s so interesting to me because we think about mental health and it was really scary for our family when he started, like you said, you were hallucinating; you know, anxiety, close to what we can, you know, label delirium. But when someone hallucinates, generally the issue is they’re having a drug reaction or they have a very high fever. You know, and that needs to be looked at because hallucinations generally are not mental health issues. You might get, you know, paranoid or delusional, but when you’re actually seeing things, you know — and this is something that doctors should know, you know? But instead, the reaction from doctors is either bipolar, schizophrenia — bipolar in my son’s case, which didn’t make sense at all — and another cocktail of drugs that just adds to the toxicity that, you know, you’re already experiencing.
I’m just curious too, just to go back a bit: So you were 12 when you first received — was that Levaquin?
Dana: Yeah.
Heather: See, that’s just amazing to me, you know?
Dana: Honestly — I mean, he said that yesterday. He’s like it should be — (laughs) —
Heather: That is off-label for children.
Dana: — it’s a crime.
Heather: Lee’s daughter got it at 13.
Dana: You know, and it’s the weirdest thing because I just look back at every time I took these now it makes so much sense. I just remember when I was 12 taking that and I remember laying in the basement and my arms, like, felt super heavy and I just felt like a paranoia, just the weirdest thing, and it’s like you think, OK, maybe I have a high fever, it’s from being sick, but you’re also 12 years old so you’re like, I don’t know what’s going on. And you don’t think it’s from a drug that your doctor gave you within 10 minutes of being there, when you’re 12 years old, you know. It’s just — it’s crazy. But now that I know what I know and everything I’ve learned, I can look back and see all these things, you know, right in front of my eyes what happened every time I took it.
Lee: Wow.
Heather: And your mother — I mean, just to put this out there, this isn’t, you know, a family — your mother was a nurse, correct?
Dana: She was an X-ray technician, yeah, but she worked at the hospital.
Heather: She worked at the hospital, yeah.
Dana: Yeah, for several years. And, you know, she had never heard of this either.
Lee: Yeah, but we’ve always been told — or, you know, you respect the doctor’s opinion and if the doctor says you need an antibiotic and they prescribe one, you’re — not only that, you’re going to a pharmacy, then it’s being dispensed, so you’re assuming it’s safe.
Dana: Yeah. And you don’t think something that’s handed out so freely and so easily like that could be something that could cause that type of catastrophic thing. It’s just — and there are so many more mild even antibiotics or natural alternatives that are just never even talked about.
Lee: Yeah. And I don’t know if you, I mean, have heard — like, heard about informed consent, but I know for both Heather’s son and my daughter, Charlie, like, had we been told that side effects, you know, our kids wouldn’t have taken that medication, and I’m assuming if your mother, you at the time — probably not you at that age; it would have been your mother — but had there been a list of side effects read, you know, it would have been, what else is available? What are the alternatives?
Heather: And this is a young woman who’s getting this drug, though, from age 12 to when did you start having — feeling these effects?
Dana: Well, I always — you know, I had issues on and off just growing up for things that I’m realizing now was not a normal way to feel when you’re growing up, and I didn’t know any differently because that’s just how it was and I thought oh, everybody must feel this crappy all the time. I had no idea. But it’s like when you take those on and off and every time you take an antibiotic it alters your gut microbiome and it causes these symptoms. And it was never anything that I said, oh, this could be from this drug, but then, you know, once I took that in December of 2017, that was just like the tolerance threshold for my body.
Lee: When you were going through your journey after you made that connection — like, and you did go to the emergency you said a couple times — were they trying to put more medication on, or, like, was it just like we can’t help you at all, or what was the advice?
Dana: They did — I mean, they only suggested antidepressants or anti-anxieties. That was it. There was no — I’m like, OK, I get it, you think I have mental health issues, but what about my restricted breathing? You know, it’s not a normal thing for a 29-year-old to be experiencing. Like, why would I not have proper use of my lung muscles? It doesn’t make — which seems to be a neuromuscular issue caused by these drugs, I’m realizing. But they didn’t offer anything other than that.
Lee: Wow. I know in my daughter’s case it was they wanted steroids; you know, it was anti-inflammatories because of the joint pain, but I know that that was one of the things that we declined, luckily. But I know that quite a few people that did get those that came out in that European meeting, advisory meeting that they had that a lot of people that took those almost got worse right after. But yeah.
Dana: [To Ferdi.] Did they almost try to give you —
Ferdi: Yeah. I experienced it too, where they wanted to give me steroids where I was at the hospital for allergic reaction that I never had before, and they wanted to give me steroids too, and I was telling them that I can’t take them because I was experiencing the side effects from the antibiotic that I had taken a couple months ago and they were super dismissive of that too and were saying, like, I can promise you that can’t be from it; it’s such a long time ago.
Heather: Yeah, let’s hear some of your story.
Ferdi: Yeah, so growing up I always had a lot of infections, especially tonsil infections and ear infections, and I was given antibiotics at least I would say five to 10 times in my life before I ended up taking the fluoroquinolone. And that happened in 2018 and that was the year I just finished school and I spent the summer and the whole year pretty much working different jobs to earn some money. And then in December of 2018, I got this sinus infection and I started to feel sick and I started not feeling good so I went to my ENT doctor and he prescribed me Moxifloxacin — Avelox, I think they also call it — 400 milligrams for one week once a day. And given the fact that I had taken antibiotics before and I never experienced anything from them, I wasn’t feeling too weird about it and I was happy that he prescribed me something so I could feel better because I was feeling sick. And so I went to the pharmacy, got the antibiotic and I also got some probiotics because at the time that was all that I knew about antibiotic side effects, that it might alter your gut bacteria and give you digestive distress. So I took the probiotics and took them with the antibiotic, and that made me feel good about it because I thought, OK, now I’m fine, I’m just taking the antibiotic and then the infection’s getting better and then it should be OK; that’s all, yeah, was aware of. One thing I remember that was a little strange to me: My doctor, as he was prescribing the antibiotic to me, he was asking me if I would still be growing. You know, at the time I was 20 years old so I said no, I stopped growing a couple years ago. And I asked him why he was asking that and he said there’s a couple studies out where they found that in — I think it was from dogs. Actually, it was from some animals that were still growing that had some cartilage damage and the joints weren’t growing properly. And at the time that made me feel super weird and I didn’t know what to think of that. But since I wasn’t growing anymore, I thought I would be totally fine. So my doctor asked me about that and I thought it would be OK. And then I started taking the first pill the same day and after — it only took one hour and then I felt like a very, very deep depression and I felt like I never had felt in my life before. I felt so out of it and had such a dark feeling and felt extremely unwell and I was super spaced out and didn’t even make the connection with the antibiotic at all. That’s how bad I was feeling; I couldn’t even realize what was going on.
Later that day I still somehow made it to a Christmas market with my friends and we all hung out there together and I experienced some — remember some very extreme mood swings where I would feel fine one moment and then the next moment, even though I was in a very cool setting, just hanging out with my friends and having a good time, that feeling would come up again and I would feel that dark depression and, like, the super weird feeling that I had never felt before. So that was — yeah, that was something that I had never, ever felt in my life and I was — yeah, I think my parents were kind of realizing it but then, at the same time, we also always hear that you have to finish taking an antibiotic so you don’t create any resistance to bacteria. And the next couple days we drove to Amsterdam because that’s where we wanted to spend our Christmas holidays and I just kept taking the pills and that was the only thing that I had going on at the time. But then after I think the fourth or the fifth pill — and I started taking them after the fifth pill — I got more side effects. Like, I could tell my tendons were starting to feel stiff and shortened and they were hurting. I felt extreme vertigo. My neck was hurting and was very painful and I couldn’t eat at all. I had extreme stomach pain, and that got to a point where I couldn’t get out of bed at the hotel in Amsterdam. My dad was — my parents were totally worried about what was going on and they decided to call this medical hotline because all of my doctors were out of office because it was Christmas. They called this medical hotline and they were suggesting I should immediately go to the hospital and have myself checked in there so doctors should look at me because of the side effects that could be, you know, possible from taking Moxifloxacin. So we drove home and I went to the hospital here in Germany and I started telling the story feeling terrible and the doctor didn’t do any tests on me; he didn’t take blood; he did nothing. He just said that he thinks it’s just, you know, a matter of a couple days or weeks until it should go away. He didn’t say it was impossible that that’s what caused it because I think at the time — you know, I had just taken it three days ago or a week ago. And then they still said just wait a little bit and then since you stopped taking it it should get better.
(Laughs.) I remember asking him because it was the winter, can I still go skiing later that winter? Because I had no idea at the time either that it would be a thing that would take such a long time in order to start resolving. And even then, I felt like, OK, in a couple weeks this might be totally better. But unfortunately, it got worse. It got a lot worse the next couple months, and I developed a lot of symptoms. I looked at the list that I, you know, kept continuing on my computer and there were like 75 symptoms that I had over the last — over the next years. And yeah, I got extreme eye pain; like when I would move my eyes I got pain behind my eyes and I started seeing the typical floaters that I lot of floxies experience. And when I would try to sleep I had those lightning flashes in front of my eyes and I felt like I had electricity running through my body and I had chest pain. I had panic attacks. I had severe panic attacks and paranoia. And I remember in March I couldn’t sleep at all before 5:00 a.m. in the morning; like, I was laying in bed and I felt like I was — I felt the worst I ever felt in my life by far and I couldn’t sleep at all. I got fatigue and I lost the feelings in my limbs and arms; they would constantly fall asleep. Like, I would fall asleep eventually and then wake up and I couldn’t move my arms and my legs anymore. That was a very overwhelming and traumatic time for me and my family too.
So eventually my steps went down to 1,000 or under 1,000 steps a day and I was pretty much spending most of the time in bed. And considering what I had done the year before, I was skiing for a week, I was surfing in Portugal for a week, I was traveling, you know, Europe with my friends, I was partying, I just a normal life, and then the next year after I took the antibiotic, I’m just pretty much bedridden and in bed for months on end. Yeah, that was pretty significant — and yeah.
Then eventually I found out about this Floxie doctor in Germany whose name is Dr .Pieper and he’s in Constance in the very south of Germany and I think by now he’s treated 5(00) to 600 floxies, and they come from all over Europe to him. And I remember it was a three-hour drive by car that we had to take to get there and it was an insane challenge for me; I almost couldn’t do it and I felt terrible just sitting in the car for that long and then just had to lay in the hotel bed for the rest of the day after doing the car drive. And then I went to him and he was the first doctor to acknowledge my side effects and he believed me. It was the first one who believed me, believed the full extent of everything that I experienced because all the other hundreds of floxies were telling him exactly the same. So that was a very good feeling to finally be acknowledged by a doctor. And then, yeah, he did some diagnostics with me. There are some mitochondrial diagnostics that we did and he put me on a bunch of supplements and it was the fall of 2019 and right around that time is when I started to get a little bit better and some of the symptoms dissolved and improved.
I think he puts those floxing side effects into four categories: There’s first the GABA side effects, like the very beginning, what I was describing with the depression and the anxiety and the dark feeling; that’s when the fluoroquinolones can actually inhibit your GABA receptors in your brain and then you’re missing this important calming neurotransmitter and your brain is pretty much going crazy and acting totally different than it was before. So that was one thing that I had experienced very severely but that got better after roughly a year. And then the next one I also experienced was the collagen side effects where the fluoroquinolones can up-regulate those enzymes called MMPs and they pretty much start degrading your own healthy collagen and tissue, and that’s what makes your tendons hurt and that’s when you experience the tendon stiffness and everything. And that’s something I still had in 2019, all through the whole year. Then also, obviously, the fatigue. I had severe fatigue and muscle weakness and my muscles were twitching and were weak, and that’s the mitochondria being damaged by those drugs. And I also had nerve symptoms, which is the fourth group, where I had the small fiber neuropathy where my skin felt like it was burning and had weird sensations, (I guess ?) water dripping over my skin or I couldn’t tell if — I would put my hand in hot water and I couldn’t even tell the temperature of it, I couldn’t tell it if it would touch my hands, and I lost complete feeling of my arms and of my legs at one point. So yeah, throughout 2019 I was experiencing all of those side effects from all those four groups, because some people only get the tendon pain, for example, and others only get the anxiety part. But it’s just different for everyone.
Lee: Yeah, and I think, too, you guys were both young and healthy and that was the same with my daughter, Charlie, and [Heather’s son] Shea. And I think, how many elderly people, you know, are prescribed this medication? I know a doctor that said, you know, it went through a journey of trying to convince everybody like you do, because it’s — you want the validation because it’s so frustrating to figure it out yourself and then nobody reads the paper and understands. But this one doctor said, you know, I prescribe it all the time but they’re all elderly people, so it’s — you wouldn’t — they wouldn’t even clue in; they would go to their doctor with joint pain. And, you know, you guys kind of made the connection. Dana, it took longer for you because it wasn’t until it really blew up and then you looked backwards. But, like, if you have it and you’re healthy and young and then all the sudden, after medication, these things all happen, and you read the literature, it’s almost textbook; like, what you guys experienced is exactly what our two kids experienced. But somebody that’s, you know, 75 that goes in and says I have joint pain and my muscles and my neck and — can you imagine how they’re treated —
Dana: Oh, yeah.
Lee: — and what additional medications they would be put on? Oh, your mother’s acting depressed or anxious; like, "here you go; take some more.
Dana: I don’t even think it’s supposed to be prescribed in the warnings to people over 65, in the black box warning, so —
Lee: Yeah, but the warnings were not followed because my daughter — the warnings were all in place when my daughter got the medication.
Dana: She was so young.
Lee: She was 13 and she was, like, an athlete, and pretty much everything that you both have described she had. I didn’t connect the anxiety and the insomnia, just being scared to be home alone. These things — I didn’t connect that. I thought it was because she was experiencing pain and that made her scared. The way you guys described it, you know, how it affects your central nervous system and the GABA that you were mentioning, like, I made that connection much later, because in the time you’re just living it.
And I feel bad — it’s heartbreaking to hear your stories, actually; it brings me almost to tears because I protected Charlie. She didn’t read the information about the people being in wheelchairs and this. To have to read it and realize it’s actually happening to you and then try and fight to get care, it’s so awful. And I know that that is what Heather struggles with because that’s what Shea was trying to do is convince his doctors that this drug had done this, you know — while you’re sick, while you experiencing these symptoms.
Heather: That’s devastating, but it’s just so frustrating and I think these stories kind of just pull back the veil and allow us to see how easy it is, like, discussing elderly people who might get this and have these effects, someone younger, like you — how easy it is to get into a health system in which the treatment actually — you know, you’re having an adverse reaction to a drug, you’re having a toxic reaction, and then what’s supposed to be what the medical establishment believes is your issue or your diagnosis, in many cases — it was in my family — the treatment killed my son, in both respects: in first getting the high, high dose of Levaquin for a preventative measure over a long period of time. They wanted him to take it 40 days; they gave him two 21-day prescriptions, 750 milligrams a day. We know he took it 20 days.
Dana: Twenty days.
Heather: But his — he kept saying it was messing with his mind, he couldn’t — he was a walking zombie, you know? But he also just had a surgery that he never had — he never had surgery before and a nasal, deviated septum, it’s a violent surgery; I mean, they need to break your nose, so we’re just thinking it’s a reaction, you know, to just the trauma of having surgery, and the medical institutions make you believe that it’s all these other things, but primarily what was really pushed in our circumstances is this whole idea of an underlying illness. You know, it’s an underlying mental health issue. He’s at the age where that would present, you know, it’s not from this drug, when it’s so clear. I mean, even — I know both for Lee and Ferdi and Dana this occurred after the labeling; at least you had the labeling on the box, you know, in the States, anyways, where you could say — I know Europe is at that point too. But even though the labeling wasn’t as comprehensive as it is now in regard to these issues being irreversible or ongoing, after you stop the drug, there were so many testimonials. People have written books about this going back 20 years, you know, and it’s just — it’s so unfortunate because I think we hit on something so important. There are so many people suffering from this and they’re being treated for some misdiagnosed ailment that they don’t have, you know? And unfortunately, nine times out 10 — I don’t even think it would be a stretch to say 10 times out of 10 — the treatment will certainly lead to the worsening of this and a host of other effects, or the treatment kills somebody, you know? And it’s just like, this is so frustrating, just so frustrating. And the other thing about it that’s so insidious about it is some people never know. They never even know this was the issue. This is not rare. People don’t know. People are being told it’s, you know, this or it’s that; it has nothing to do with that drug. That’s what makes it rare. What’s rare is somebody in the health — a health provider actually acknowledging and listening to someone; that’s what’s rare, not the instance of these reactions.
Lee: And the reporting of it, as we’ve discussed in other podcasts, the reporting of it.
Dana: Yeah.
Lee: I’m curious with both of you — and I know that you’re not — you know, you’ll tell us how you’re feeling today and a lot of people say that they don’t completely heal. Like, I would say my daughter, you know, is definitely not 100 percent. But what was it that you think worked to make you — to improve? Was there something that you did that helped?
And we’re not giving medical advice on this; we’re just — we like to share — what worked for you might not be for everybody. I know for us a lot of it was with Charlie — because of the gastrointestinal issues it was a lot of, like, really clean eating. Like, until now she doesn’t eat non-organic meat just because of the risk of the antibiotic being in the meat. But it was a healing through food a lot with us, but I’m just curious what worked for each of you.
Dana: I guess I don’t know what to pinpoint it to exactly. I think it was in June of 2020. You know, if there’s anything I’ve learned — I mean, I’ve learned a lot through this entire thing but it’s just how insanely powerful our bodies are. Our body’s constantly working to repair itself and, you know, there’s things you can do to assist it, but as we know and you guys know with this, there’s no one thing that can help. But I know it’s different for everyone. I just started noticing in June of 2020 that I was able to stand a little bit longer. I could stand for 30 seconds at a time, and then a minute at a time, then five minutes, and then I started taking steps and I was able to leave the bedroom. I remember the first time I went out and felt the sun on my skin in, you know, almost four years and it was just the most amazing feeling just to be outside again, you know, breathing fresh air. I feel like that — once I got that momentum, like, OK, my body can do this; you know, it can get better. I just was able to do a little more and more from there each day, even though I still hadn’t left the house yet; I didn’t even leave the house or go somewhere else until this past May, so it hasn’t even been that long since I’ve been back out experiencing life again, I guess.
But I think what I can say helped is just, you know, getting lots of sunlight. You know, I was only eating a certain amount of foods because I have a very restrictive, limited diet, so just eating as best as I could I’m sure helped, you know, and then I met Ferdi — (laughter) —
Heather: (Laughs.) I love this. (Laughs.) Why don’t you guys talk about that a little bit? That might be a good lead-in about how you two met because you were, you know, across the world from each other.
Dana: Yeah. I had been off social media for years. I couldn’t handle it. It was too hard for me to see pictures and stuff of people just living and enjoying their lives. I stayed off of it. And then in September of 2020, I wanted to create an Instagram account to share my floxing experience because I saw there was a large group, a community on there of people who had been affected by these drugs, and so I just created an Instagram account — (laughs) — and then — we don’t know who started following who, I think, but then he ended up just sending me a message, a personal message on Instagram that was very nice and said I’m so sorry to hear what happened to you, and just shared a little bit about what had happened to him and then —
Ferdi: Yeah, I mean, I felt the need to talk to people who can relate too and I was — you know, Instagram had a small community of floxies at the time and that’s how we connected, and I think we started off talking about floxing mainly and comparing what we’ve been through and what we’ve experienced and what had helped us. Then we also found out that we’re both into music and that was like the number two topic that immediately came after that and we started talking about music a lot. And that’s how we first connected and started talking, back in 2020. Yeah.
Heather: So you’re a musician also, correct?
Ferdi: Yes.
Heather: I was just going to say, that’s probably really an important piece of this, though, because so often — it frustrates me there’s not much more research because I have met so many people who have experienced what Charlie — after Shea’s death — what Charlie went through, what you two have gone through. You’re so articulate; you’re so in tune and aware of what’s going on in your body. Shea was that also. He knew. If there was just some research. I mean, this is all-important information where there could be more research going on to see what can or can’t help people in this situation, but I would assume having this community — and that’s something Shea never had — but you also discuss, well, I’ve tried this or this didn’t work. That’s a huge part, because a large part of this, it appears to me, when things go really south is when there is the presence of treatment but not for the underlying condition, not for the toxic reaction you’re having to the drug but for whatever it’s contributed to in terms of a medication or a treatment from a health provider outside of that, whether it’s a mental health issue or what — you know, those seem to be the situations where things really get horrific quickly. But I would think that would just be so — I mean, I think that could have saved my son’s life if he had this type of community to chat with.
Dana: It’s so important. It’s so important because, you know — and that was a huge thing with him. I mean, you know, we were just talking as friends and people who had both suffered from this reaction and, I mean, he was so helpful, the stuff that he was suggesting to me.
[To Ferdi.] And I just felt like you knew so much about it, just — you know much more than I have known at the time.
And he was always offering things to help and that was so helpful and just, you know, kind of supporting each other. And you need that support when you’re going through — and just to have that support from somebody who knows what you’re experiencing is — you know, that was so important.
Lee: I think that’s so valuable. I think it’s — because so many of them, people that have been harmed by these medications haven’t been validated, often by their families — it sounds like you both had very supportive families, but you hear those stories where, you know, I know one girl — you may know of her — who’s not with us today but she struggled. You know, your own family members don’t believe what’s going on. You know, am I making these conditions up about my daughter? Like, am I overexaggerating? You know, like who wants their kid to be sick? Who wants to be sick? But to find a community that’s going — it validates that this is actually a real thing and it’s really happening and also to share, like, what has helped. And, you know, that’s sort of been my mission is any time I see somebody on the Facebooks or the Instagram that’s reaching out with, like, what can I do, like, I’m very quick to help as much as I can, this is what worked, or just to support those people. Like, it is a real thing; what you’re experiencing is real, you know?
Dana: Yeah, it’s so important. I think, actually, it’s just — it’s something that I don’t even think people going through this, you know, realize how important that is sometimes. And we’ve both been so lucky because our families had been — I mean, I never would have gotten through it if I wasn’t able to stay with my family and they were supporting me. But I just think having that, you know — and then when eventually, in December of last year, he felt he was well enough to get on a plane and come to the United States for the first time— (laughs, laughter) — which was a huge deal —
Ferdi: Totally.
Heather: We all follow you on Instagram. (Laughter.) We’re, like, living through you! (Laughs, laughter.)
Dana: (Laughs.) Yeah, that was huge. I mean, neither of us can still take that many steps, so, you know, he was able to use the airline assistance, which took him through the whole airport and —
Ferdi: Yeah, even in December of ’21 my radius was still very small. I, you know, was able to go out of the house a couple times a week, maybe do a couple small things, visit my grandma, for example, but I hadn’t done much more than that besides visiting, you know, doctors, like Dr. Pieper, for example. So flying to you was a huge step for me and I was very scared of it. But luckily there’s something called just airport assistance that takes you in a wheelchair that — you know, my biggest problem too is with taking many steps, so that helped with that a lot, and then I just went on the plane and somehow made it and that was such an accomplished feeling, and after that I feel like, you know, I was able to fly to the U.S. and then what else? I mean, I can do anything now pretty much.
Dana: (Laughs.)
Ferdi: It was such a good opportunity to get some trust back into my body because you’re on the airplane in the middle of the ocean, you feel like no one can help you now; you just need to get over it yourself, after all those years where you just lost all the trust in your body. But once I landed there I regained a lot of it, and that was very helpful too in that sense.
Dana: Yeah, and then he, you know — I still hadn’t left the house at this point, so he started encouraging me and taking me on just little drives where I would get — my parents live in this, like, little cul-de-sac-type thing and he started encouraging me to sit in the car and let’s just go like around the small circle, you know, let’s just practice getting in the car, and, you know, we did that the whole time he was visiting and I started to get more comfortable trying to do stuff like that again and I felt my body getting stronger, my legs getting stronger. And then he ended up coming back to visit again this last May and, you know, he — I had practiced a lot with the vagus nerve stimulation, which I feel helped me, just stimulating your vagus nerve, which controls so many bodily functions. I feel it was helping my breathing. And he had tried the Parasym device, which is something that they don’t have in the U.S. We can’t get it here and he brought it and I started using it when he got here in May, and I started noticing I was improving. Just this last May I was able to go to my sister’s and see her house; I had never seen her house; she lived there for two years.
Heather: What is that device? I’m not familiar. Can you talk a little bit about that?
Ferdi: Yeah, it’s a little medical device; it’s only available in Europe. I think the FDA didn’t approve it yet. And you clip it on your tragus that’s here at the ear and it sends electrical stimulation to your ear and actually behind the ear there’s a branch of the vagus nerve that goes through your whole body and, you know, is important for your organ function and for your whole nervous system and for your parasympathetic nervous system. And with that device that’s attached to the vagus nerve, you can actually stimulate it and make it function better, and there’s actually a paper on it talking about how floxies might have vagus nerve dysfunction.
Heather: We should post that, yeah, if you could give us that.
Ferdi: Yeah. And the paper suggests that that might be something that floxies could benefit from; that’s why I got it and I felt like it helped me, too, in ways. I didn’t see a, you know, crazy improvement after it but I feel like it calmed me down and made me feel a little bit better and got me into the parasympathetic state which I still struggle to get into a little bit. And you’re able to support that function with the vagus nerve stimulation and yeah —
Dana: I noticed from using it just for a few weeks that I was able to go and do things. I was able to go to the city and we went and visited there. And then, you know, when he was here I just never felt like I would be well enough anytime in the future to be able to come here to Europe and visit here, so just the fact that I’m sitting here right now and was able to — you know, I used the airline assistance also and was able to get on a plane and fly here. It’s been miraculous and I never imagined I’d be able to do something like this.
Heather: That’s wonderful. Yeah.
Lee: So wonderful.
Heather: And that makes sense with that device because what we see especially on the labeling, and I know we fought — and Dr. Bennett will be a guest on this podcast, but I know he’s been real persistent with the citizens petitions to the FDA in regard to — right now the labeling talks about central nervous system, you know, damage, but a lot of times that doesn’t strike someone as the neuropsychiatric issues that, you know, the panic and the anxiety — (inaudible) — we talked with Dr. Healy about akathisia, which can be induced by different medications. And I liked the way — you know, we try to be polite about it and call it an adverse effect. You know, he said something in his podcast that you were poisoned. You were poisoned. You know what I mean? This is a poisoning. When he would talk about my son — he was one of my son’s experts in the court case — you know, this was a — and that really puts it in perspective, you know? It kind of takes out all these responses of how rare it is or, you know, it’s so uncommon that can’t be it, you know. It has adverse effect.
Dana: It’s just not that rare. (Laughs.)
Heather: Yeah. (Laughs.) It’s like, you lived it and I’m just so grateful that you could share your story.
I want to ask you about something. I know with my — Shea was a musician too.
Dana: Yeah.
Heather: His death — you know, when I talk about it — it was tragic but it was a slow walk. And I think both of you and Lee, having gone through this yourselves or with a family member, can kind of imagine what it would be like to not have anyone to validate this and then be given further drugs and be given a label of being mentally ill. So it was a very slow walk to his death. He became very much different and in the end, you know, somewhat empty because his struggling with this was horrific. But I can say, when he was making music, those were the few times during those two years where I had him back. And it might even be, you know, just for two or three minutes, but, hey, Mom, can you listen; I just made this beat; can you listen to it? And he was there.
Dana: That’s so great.
Heather: So I just — I know you too are both musicians. I just have to imagine that that was helpful to both of you to have that connection also and to be able to produce that type of creativity together while you’re coping with this. It was probably just phenomenal.
Dana: It really was. It was a struggle for me. I think just losing my ability to sing, because that was always one of my favorite things to do, and I wasn’t able to do that for a while and then, you know, we started just recording songs back and forth to each other across the ocean — (laughter) — you know, I would just be singing just little tiny pieces at a time to record and I would just be in bed sometimes just doing that, but it was just so motivating and helpful just to always be able to have that part of it, you know.
And I — you know, how much you love music; I think just listening to music, playing music, just getting strong enough again to play and sing and it’s just been a great thing.
Ferdi: Oh, for sure. I mean, I remember in 2019 I also struggled playing the guitar because my fingers were just not moving the way they used to and they were stiff and I couldn’t really control them, and when eventually that started getting better, it was the best thing in the world. It was like the best supplement for me, if you will, to play music and play guitar, and it has always been a huge part of my healing, and even just listening to music. You know, when I would feel terrible and anxious and then had my songs and I would put them on and they would immediately make me feel better than pretty much any supplement in the world, I would even say. So it’s been a big part for me too.
(To Dana.) And then just doing it with you has been, like, a very amazing experience, I will say. (Laughs, laughter.)
Dana: I feel the same way. (Laughs.)
Heather: I (see ?) big things for you two. I really do.
Lee: That’s so great. It’s so wonderful that you guys have had this horrific, life-changing experience but, you know, at least have connected over it and have each other’s support and the music that you make together. Not that you would trade what had happened but, you know, at least it has brought this, you know, wonderful relationship.
Dana: Yeah, you know, we say that too. I mean, as terrible as it has been, we never would have met if, you know, this didn’t happen. (Laughs.)
Ferdi: (Laughs.) For sure. Never.
Heather: Yeah, and I think what’s important for all of us to remember too, you know, I don’t have Shea with me anymore but now what I could do is tell this story. And I know this story — Lee was in contact with me very soon after, you know, her daughter had this happen to her and it diverted this whole entry into, you know, mental health, other medications that could have certainly sent her down a path that no one should have to go down to and which is fatal.
So I just — you know, for you two this is wonderful and I hope that in sharing these stories the word — there’s hope, you know, because I really think one of the things when there’s no hope that’s when you kind of give up, you know, and that’s when you hear these stories like mine, you know? We’ve got to speak out. We’ve got to say — even if people don’t want to hear it — I don’t know how many times people rolled their eyes, you know — I don’t care. One person (can ?) hear it.
Dana: It means a lot to us that you guys are doing this and, you know, getting the word out and helping a lot of people and just — I know I feel very thankful for that and just what you guys are doing and —
Ferdi: Me too. It’s very important.
Lee: Well, we’re just so appreciate of both of you for sharing your experiences. It’s probably painful to talk about it and relive about the worst days and, you know, you’re still on your healing journey. You’re not back to where you hope to be and, you know, hopefully that journey continues for you. But we’re really grateful.
Dana: (Laughs.) Thank you.
Ferdi: Thank you.
Dana: Yeah, I feel very happy, and you know, even if — you know, there’s still certain things that neither of us can do. You know, we can’t play physical sports or do — but you know, sometimes it’s just, you know, nice to — you know, we’re lucky to have our families and lucky to — you know, they drive us places and drop us off and —
Ferdi: All the time.
Dana: Yeah.
Heather: (Laughs.)
Dana: (Laughs.) Just, you know, doing little things like that, and even if it’s not where we were at one point, you know, I don’t doubt that either of us can get back to that and continue to improve.
Ferdi: And there’s so much we learned along the way too that we never would have learned or we wouldn’t have grown in a way if we wouldn’t have experienced that, so there’s also that side to see.
Heather: Yeah. And I just know your story’s going to be an inspiration.
Lee: Heather and I, just on a final note, like, with our podcast saying, you know, be your own expert, like, I think we can all say what we’ve learned is question everything that we put in or on our body because you can’t just take it because it’s prescribed. You can’t just continue to take it even when you’re having side effects because you were told to not stop. Like, you now realize we need to be aware and, you know, we need to research. And you guys are so, both, intelligent and I’m just impressed with, like, what you’ve learned about this medication and the side effects and what’s happened and — you know. And I know both of you and us too are going to be that much more careful with everything that we continue to take, weighing the risk and benefit at all times, really.
Dana: Yeah, and there’s just — you know, there’s more and more research and more and more studies that are being done to learn more about it, and more communities out there for — you know, what he’s doing now he’s helping other floxies; they’re doing coaching and just helping —
Heather: Oh, wonderful.
Dana: Yeah, he’s part of a group — you can talk —
Ferdi: I can talk about it real quick.
Heather: Oh, can you talk about that a little bit before we let you go? Yeah, that’s wonderful. I didn’t know that.
Ferdi: There’s this home page called FQ Consulting. It was founded by a Swiss medical student who himself had also gotten floxed and he’s about to get his medical degree very soon. He’s at the very end of his studies. And he was coaching me. He opened this site where he would offer help for floxies. And he was talking to me in 2020 and 2021 and then I got a lot of help from him. He knew so much about it and it was amazing to have him to talk to and he got me through this, like, to a great extent. And eventually he asked me if I wanted to be part of this home page too, if I wanted to talk to people and help people in the way he did with me. I obviously said yes. I did this online course on IIN to become a health coach last year, and yeah, now I’m part of his page too and we’re offering one-on-one consulting for floxings but we’re trying to help them. And we’re offering a free monthly support group for people — so far only in German — but where people can, you know, connect with each other, support each other and just we’re trying to create a space where people can talk about their experiences without being judged and where they’re understood. We’re also planning on doing an English one for our American and British friends. (Laughs.) And Marco [Karrer] will also host mindfulness courses there to help with stress management and pain management. We also founded this Instagram site for the home page where we’re trying to raise awareness and, you know, educate people on the side effects and just spread the word and help people that need the help because there’s not a lot of places where people can go to get help at the moment.
Heather: We’ll have to put all that on our website, because we’re getting a lot of — I know Lee can attest to this too, but people are emailing us with questions. It would be nice to be able to give them a resource such as that.
Dana: Yeah, they have free support groups —
Heather: So important.
Lee: for, you know, anyone that wants to join and just if they don’t have — you know, don’t have the family support or the community, just where they can connect with other people.
Heather: This gives me a lot of hope, though, because I know Lee’s daughter is in medical school. Charlie. Yeah, they’re in Australia. So maybe we won’t change this system right now, but it’s coming and with organize groups, like Ferdi and Dana giving this outreach, I mean, this is what it’s going to take, you know? It’s just really going to take getting out there, in Charlie’s case infiltrating it. (Laughs, laughter.) I have no doubt she’ll be a doctor who will listen.
Dana: That’s so great. (Laughs.)
Heather: This was just a wonderful chat. I thank you two so much for being with us.
Lee: Yeah, thank you so much.
Dana: Well, thank you, guys.
Ferdi: Thank you for having us.
Dana: Thank you for having us. And thank you for what you’re doing to help all of us.
Heather: We’re trying.
Ferdi: Thank you.