FLOXED

Lauren Saikkonen was living life. A couple of young kids, loving husband and a great job in her chosen profession. Then one day in 2011 her mind pulled the emergency lever and shut down her body. She has never recovered. What can do this to a healthy person?...Fluoroquinolone (FLOX) antibiotics. Aside from the daily struggle to function this remarkable person has devoted her life to advocate for others that have been FLOXED

Transcript

Daniel

Lauren Saikkonen and welcome to A Patient Story Podcast.

Lauren

Thank you for having me.

Daniel

All the way from North Carolina.

Lauren

Yeah, half a world away.

Daniel

Yeah, we sure are. So I'm very grateful that you've given up your Sunday to come and join me, but it's such an important topic. It makes it really worthwhile for both of us and our listeners, I think. And we're going to be talking about the results or the, not results, but the bad effects that you had from fluoroquinolones. And these are a type of antibiotic. I know they're still prescribed reasonably commonly in the US and were reasonably well prescribed in Australia, although they are diminishing in Australia to some degree because it was only last year that the health department here sent out some urgent bulletins saying, you know, be very, very careful with this drug because of the nasty side effects that they cause. And I'm so surprised when I knew we were going to be talking about this topic, just looked at the Australian prescribers website and I was so surprised that information, that warning bulletin only came out a year ago, after we've known these drugs have been around since the 1970s. And I was so surprised that it's taken so long to get to this point because of how nasty the side effects can be and how reasonably common they can be. So Lauren, let's talk about you now. It's enough of me. And you're a young mum and you have two children, two young girls. And you initially took a dose of the drug Cipro, which is basically fluoroquinolone, back in 2011 for some stomach pains. What sort of pains were you having at that time?

Lauren

Finally figured out after some time and perspective that it was undiagnosed irritable bowel syndrome. The dr didn't really know what it was, so she was just, I think, taking kind of a kitchen sink approach and just throwing anything at it just to kind of throw it at the wall and see what sticks.

Daniel

And did you have any immediate effects from the Cipro at that time?

Lauren

The effects weren't immediate. Looking back at my medical records, because I kept records of every medical detail since I became ill, the effect was delayed approximately a month. So I was prescribed Viscipro in September 2011. And then looking back at my records, it was October that I was diagnosed with chronic fatigue syndrome, which was a misdiagnosis.

Daniel

And what were your primary symptoms at that time?

Lauren

So I still kind of remember it like it was today. I was just standing in my living room just on a normal day and it was just like a bomb went off in my body. Just all of a sudden it felt like a wave washed over me. It became very weak and fatigued and It just felt like something swept over me and I called my mom and said something's wrong. And I didn't really get out of bed for a few years after that.

Daniel

Because the side effects from Cipro and other flox, the short word, drugs, is quite different in a number of people, but chronic fatigue like or exhaustion like syndromes are certainly one of the more common ones because it seems to poison the mitochondria, the little cells in our body that drive energy for us. Is that what was eventually described to you as happening?

Lauren

Yeah, the way that I've come to understand it, and I'm not a scientist, my background is in history education, But from what I understand is that the fluoroquinolone targets the bacteria, but it becomes like a friendly fire because the bacteria looks very similar to the mitochondrial DNA. And it damages the mitochondrial DNA in a way that when every time the DNA replicates, it's replicating the damaged version. So it breaks the template for the mitochondria of each cell and then it's just replicating the damaged version. And that's why the body can't fix itself is my rudimentary understanding of the damage.

Daniel

That was a very good explanation. And I think that's possibly half the story. I think the other half of the story is it actually significantly depletes, actively chelates, which means grabs and pulls out of your body. some significant nutrients which the body uses to make enzymes and mitochondrial function as well, particularly magnesium. So it's a bit of everything, I guess. Yeah, did you have any... Yeah, sorry, go on.

Lauren

Oh, sorry. From my understanding also, I mean, it just breaks from the eyebrows down. It also crosses the blood-brain barrier. So the layer that protects your brain from toxins and bacteria, it crosses the blood-brain barrier and can cause psychosis, causes brain damage. I have very significant brain damage and psychological issues, either from the Cipro itself, but also the trauma that all this has caused me as well.

Daniel

I'm sure I can't even begin to understand the emotional issues associated with all of this. So with the Cipro brain damage, what do you mean brain damage? Is that I know there's a lot of psychiatric conditions associated with the use of fluoroquinolones, but is there also physical structural damage to the brain as far as you know?

Lauren

As far as the damage to the brain, I don't exactly know, but psychosis is one of the documented adverse effects. And I work very closely in conjunction with Dr. Charles Bennett of the University of South Carolina, and he studies fluoroquinolone damage and toxicity. And in some of the work that I've done with him, he's mentioned that there's been 122 documented suicides associated with Cipro in particular. And for myself, as far as the brain damage, when that bomb went off into my body in 2011, it wasn't just the fatigue and the weakness. I was a teacher and I discovered that I couldn't read anymore. I went to, because I was still trying to teach and struggling, and I went to read something that I had assigned and it was almost like it was in a different language. I just could not understand what the words meant. anymore. So I don't know exactly what the damage was, but I just, if it takes away your ability to read, it's doing something.

Daniel

Oh my goodness, that must have scared the living daylights out of you.

Lauren

It did. And I dedicated my life. I'm like, okay, I'm stuck in bed now. I had to resign from my teaching position at the age of 27. And I dedicated my life trying to understand what had happened to me because I know it was something happened. This did not just come out of nowhere. And that's been the really frustrating part of it is that the government, at least in the US and all these governments know that this is happening and it's just kind of they're allowing it to happen, which is the really frustrating kind of agonizing part of it for me.

Daniel

Have you come across many people in your, because I know you're an educator as you just mentioned on the topic, do many people come to you with their stories of how they were affected?

Lauren

Yes, I'm actually a member of a very large fluoroquinolone harmed community. So I'm in constant contact daily, just chatting with people from the community. But a really interesting anecdote of something that happened is that I made a friend in town. We just kind of met through a different channel, completely unrelated to health. And we got to be Facebook friends. And we got to see each other one day and she says, Lauren, like, tell me what you're posting about. Like you're talking about antibiotics and then you got sick. Like, tell me like what happened. So I was giving her the rundown and she said, you know, like I got really ill after I took an antibiotic and she decided to look through her paperwork. And long story short, she had taken Levaquin and that's when her mysterious illness happened for her. So I think that this is so pervasive that everybody probably knows somebody that's been adversely affected. And 9 times out of 10, it's just mysterious. people get misdiagnosed with like chronic fatigue syndrome, fibromyalgia. it's in your head, you're tired, you're stressed. It's psychological, things of that nature.

Daniel

But then in 2023, you had a urinary tract infection. And am I reading it correctly that you were given the same drug again?

Lauren

Yes, a lot happened in between there. So even before 2023, in a desperate attempt to try to get better, I had neurosurgery. I had a cervical spinal fusion just in kind of desperate hopes of trying to get better. My body had a severe adverse reaction. And I nearly passed away. I was in hospitals. They couldn't figure out what was going on. So I was forcibly committed to three different psychiatric wards because I was misdiagnosed as a psych patient. And then finally, after everything, my system settled and I came home and it was kind of back to my baseline and thought the nightmare was over. I thought perhaps I had a urinary tract infection as a separate issue and got prescribed Cipro and was injured again. And this time the adverse effects were immediate. And the icing on the cake is that I didn't even have a urinary tract infection. She just suspected one. She told me I had one. And she said, hey, let's not get out with this. And that's, I had an immediate adverse reaction. And my husband said, you've taken this before. I swear to, I swear, you know, you took it before. And he dug back through, I mean, just thousands of medical records and clear as day in 2011, I had taken it. And that's like how the mystery was solved. Like, that's what happened. And this is how I had to find out.

Daniel

So that was only three years ago. Wow, amazing. And the extent of the reaction Was there a different type of reaction? Was there any other symptoms?

Lauren

Yes. So the day after I started it, so two pills in, my hands and my feet started to hurt. And then that night that I took it, I could not sleep, could not sleep for anything. It was like 4 A.m., couldn't sleep. And then the next day I just look up, Cipro, like pain in hands and feet. And that's when on the FDA website, I see peripheral neuropathy, that one of the black box warnings is permanent nerve damage in your hands and feet. And of course, that's terrifying. And then I start looking through it even more and it says risk of permanent disability, risk of aortic dissection, risk of retinal detachment, suicides, deaths, you know, and you know, that's Psychologically, how terrifying is that, I was already disabled? I was at 50% and here I took something that could have damaged me even worse. And I'm like, why did my doctor, why would she give me this for a urinary tract infection?

Daniel

It's just quite amazing. And because in Australia at least, part of the education that's... the government's trying to push through is, they're still going to have this drug available, but it's very, they're trying to make it the very last, if everything else doesn't work, this is what you use. But even then, I think it's, you have to really determine whether the risks are worth it. It's so damaging. A lot of people also have significant tendonitis and tendon rupture, particularly the Achilles tendon. And have you come across many people like that? I mean, I've seen people reports of people after taking this drug in wheelchairs because their tendons have ruptured permanently and they're permanently in wheelchairs. But is that something that you've come across much?

Lauren

Tendon rupture is like the most commonly known risk of fluoroquinolones. And fortunately, I mean, knock on wood, by the grace of God, that's one of the few things that didn't happen to me. But the frustrating thing for myself and so many people in the US in particular is that in 2015, a group of people that were severely injured, disabled, in wheelchairs, had loved ones commit suicide, actually testified before the FDA in the US. And the FDA coined the term fluoroquinolone associated disability. They acknowledged the risk of permanent disability. And they put on the warning on the website with fluoroquinolones that they should be last resort only. It says that black and white do not use this for urinary tract infections. And they actually told the manufacturers, put this in the literature, you know, so that patients can make, you know, an informed choice. And the manufacturers simply declined and they just left it at that.

Daniel

You're kidding. Oh my goodness.

Lauren

Yeah, I guess I came to find out, there's every time you shake this centipede, another shoe drops out. In the US, the FDA can make advisories and warnings and recommendations and manufacturers are under no obligation to follow those warnings.

Daniel

Wow, it's such a big story. So how many in the US, how many people do you think are affected? Do you have any idea or concept?

Lauren

Yes. So just looking at one year, so Cipro came out in 1986. It was approved. So this has been going on for 40 years. And to look at one year in 2023, in the US there was 14 million prescriptions for fluoroquinolones and the FDA just said that they believe that 1% of people are fluxed meaning you know severely injured, killed, commit suicide. So if you do that quick math, 1% of of 14 million is 140,000. And that's the most conservative estimate. And that is one year alone.

Daniel

From my experience, there are so many sub conditions or minor side effects that don't make the grade and people still have a reduced life, but they don't quite qualify to be called floxed. And so you would expect that number to actually be much higher?

Lauren

Yes, the numbers are really astounding when you look at them. In 2025, through the work of my friend that's been injured in the US, Talia Smith, and the work of the fluoroquinolone toxicity study, actually finally got ICD-10 codes passed for fluoroquinolone injuries. So just last year, you can go to the doctor now and be diagnosed as being fluoroquinolone injured. And the funny thing is, is that I feel like the drug companies have worked very hard in the US particular to sweep this under the rug. Every other antibiotic with much better safety profiles already had ICD 10 codes. So if you know, the FDA said in 2015, almost 10 years ago, that this can cause permanent disability and all these other things. Why did it take almost 10 years for an ICD-10 code to come out to diagnose those injuries?

Daniel

The research on fluoroquinolone also shows that we know that all antibiotics cause some degree of death to the intestinal microbiome, but fluoroquinolone is certainly amongst the worst. and the most long term damaging as well. So the information has been known about it for some time. It's pretty bad.

Lauren

Yeah, that's the really frustrating thing is that and people, you know, some people say don't take any medicine at all, you know, people that have been injured. But my contention is, is that they should be prescribed as indicated. So if you have anthrax, if you have plague, that's what these these antibiotics were designed for. If you have those things, you might have to roll the dice. I'd rather take the anthrax, given what I've been through. But they should just be used as indicated. And that's the really frustrating thing is like if you're using this for a urinary tract infection or a sinus infection or You know, an ear infection, it's like killing a fly with a flamethrower. The fly is dead, but you burn the house down.

Daniel

Yeah. When the health department allowed recognition of the syndrome and some degree of liability associated with that to the drug companies, did that make victims of this drug suitable candidates for some sort of compensation in the U.S.?

Lauren

No. Well. Like I said, it's that centipede. So in 2018, Johnson & Johnson lost an $880 million class action lawsuit due to fluoroquinolone injuries they had to pay out. And instead of, making it anyway safer, making sure that it was prescribed responsibly, they switched production to generic to shield themselves from liability. So you in the US, you can't sue a generic drug, no matter what it does to you, doesn't matter. So they just played the shell game in order to just injure people and not get sued for it.

Daniel

So then it's got to come back to education of doctors. And where is it lacking? Where have we missed the education for the people prescribing these drugs? I know a lot of education is driven through drug companies, but certainly the government must have some role and responsibility in educating. Has that been happening in any way?

Lauren

No. Your average primary care doctor here, urgent care, especially your average doctor just. does not know, or if they know some of the advisories, they don't take it seriously. My own doctor that I see just for some labs and to prescribe my medication, even just my last visit, he denied that Cipro had disabled me. So your average doctor is very, very resistant, at least to hearing this from patients. So I've since become a patient safety advocate and I've been lobbying the North Carolina General Assembly. And what Dr. Bennett and I have been trying to ask for is that in North Carolina, the fluoroquinolone training and advisories would be a continuing education requirement for at least licensure. in North Carolina, as well as informed consent. You know, you sign saying that you've been advised of the risks and we're hoping that it can be done as soon as one state does it, that the other states will start to follow suit.

Daniel

Yeah, informed consent is such an important topic because people just aren't told of the level of risk across many drugs, but particularly across drugs like this. So going on, What have you done to help yourself try to recover?

Lauren

Well, I did, like you mentioned, the fluoroquinolone takes a lot of nutrients and vitamins out of you. And I don't tolerate vitamin supplements very well. So what I started doing is I looked at my nutritional deficiencies, which I'm pretty much deficient in every vitamin and mineral. I started eating in a very targeted manner to try to correct or at least bring up some of those nutrients. And I actually had some very uneven, but Actually, I've seen improvement in some of my symptoms and it's not what I would like it to be, but there actually has been progress there.

Daniel

Okay, so in terms of the more common, well, actually several of the most common deficiencies where flox has been known to drag these nutrients out of your body are things like iron, copper, zinc, and magnesium. And to me, that makes some sort of sense because these nutrients are involved in enzymatic processes within your body and the production of energy and also involved in inflammatory markers to some degree and obviously oxygen transport. So it often takes quite a high dose to get people to a point where they're feeling some sort of therapeutic benefit. So did you look for foods that were particularly high in those nutrients? And if you did, what sort of foods are we talking about here?

Lauren

So I'm terrified. What kind of ends up happening is that people that have been so severely harmed, I mean, I almost died from this, my kids almost lost their mother, So the thought of taking a pill, I'd rather be shot out of a cannon. So one thing I can tolerate just psychologically is food. And I'm deficient in vitamins A, D, E, K, copper, magnesium, like you mentioned. So I started trying to replace my vitamin D through fish, eggs, and other, just trying to do a variety of vegetables, like carrots for vitamin A. Just trying to kind of eat like a spectrum of fruits and vegetables and meats and then especially fish for vitamin D. And I have like, since I started the really targeted nutrition, I've had less days in bed. And then I used to have like PTSD kind of episodes, like panic attacks. And it's not perfect, but it is markedly better than it was. So it gives me a little hope that I can keep progressing from here.

Daniel

And are you choosing organic where possible?

Lauren

Ideally, I would love to go organic, but especially in the US, food prices are very high. So in a perfect world, I would. especially for the fact that I'm quite ill. I wouldn't have the stamina to walk through a store if I wanted to. So I just get my food delivered from Walmart. And when I can make it to Aldi, I do that.

Daniel

So you're still not leaving the house all that often?

Lauren

I do, because I really don't want to give up on living some sort of normal life and the things that I want to do the kids and the community and socially. So I do leave the house maybe a few times a month, but it is very, very difficult. I probably should, one of my biggest fears is eventually needing a wheelchair, but I, just can't really psychologically put myself there yet.

Daniel

Yeah. I imagine that when you're getting prepared to leave the house, it's quite an event for you in terms of getting ready, getting dressed, and the thought of opening the front door. Are you able to sort of psych yourself into it more frequently? Or is it still that big hurdle that confronts you every time you go out?

Lauren

It's funny that you ask that. One of the, it's physically exhausting, but then also I have horrendous OCD and PTSD. So also the psychological aspect of what I, you know, what I need to do to leave the house. And I still so badly want to though. So I'll just, the last couple times that I've gone just to try to go to my kids' school to pick them up or go and run an errand, I'm like, you can do this. you can't do this, leave the house, like do it now. And then I finally, it's kind of like jumping off a cliff, but I do try, I do actually have to try to force myself.

Daniel

I'm sure your family are incredibly supportive. Do you have any other support mechanisms around you?

Lauren

So there's a couple of things that I wanted to mention before they completely escape my brain. So you asked about like natural methods, how am I coping with this? So aside from the foods for the PTSD and the OCD, and you asked about support, I have a therapist that I meet with weekly. And we do talk therapy and then especially to try to target the OCD and the PTSD and the anxiety. I've done started a highly specialized modality called EMDR, which is specifically designed to try to and has been shown to help with PTSD. They use it for veterans. And I don't know the entire I don't know the entire psychology behind it, but it helps retrain the brain from it takes it from like an active threat to a past threat and she just like it's like you watch a little bouncy ball go across the screen from left to right. And her name is Lynn and she says, Lauren, think about, the most we go through and I say like the most traumatic experience. And she says, okay, Lauren, think of like the most traumatic experience, think of the psych ward that you were in. And then she has like the little bouncy ball go across the screen. And then she says, okay, now when you're thinking of that, tell yourself I'm going to be okay or I'm safe. And it works somehow with like the REM, the way that your brain produces sleep. And you know, I don't know all the science behind it, obviously. But I really have high hopes that because the PTSD and the OCD is almost as debilitating as the physical symptoms themselves.

Daniel

It stands for Eye Movement Desensitization and Reprocessing. And it's used to help retrain eye movement and try to... disassociate bad memories using eye movement and reassociate with more positive memories. It sounds very complicated, but there's really good evidence for it. And, you know, apparently it works really quite well from what I understand.

Lauren

Yeah, I would do anything to try to, because the, you know, the physical symptoms and the psychological symptoms, I have a family So they're devastating for me, and I fight them all the time. But it's hard on my family too. my husband and then my kids, my kids know they all have to have learned, like what are my triggers? What do we do not to make mom, scared or have an episode? And so I would just do anything because especially the OCD and the PTSD. And then when I have the PTSD, I have flashbacks of, almost dying, and I would do anything to try to help alleviate those symptoms because it's like a torture chamber. in your mind. It's never-ending terror.

Daniel

And is there any other sort of inflammatory processes going on? Have you looked at inflammatory markers as well?

Lauren

Yeah, so like I said, my rudimentary understanding is that the fluoroquinolone, part of the damage is that it damages the nervous system. in a way that makes it hypersensitive. So it affects the GABA receptors. So you become hypersensitive. A lot of people are very sensitive to like medications, foods. I'm very sensitive to pollen. So yes, light, sound, it just makes it very overactive. So you're hypersensitive, your nervous system is, but it also can make the immune system hyperactive. So a lot of people develop very severe allergies or mast cell activation. Yeah, so the immune system becomes very, very hyper.

Daniel

If I was your physician, I'd love to see you adding more antioxidants into your diet. Berries and cherries and lots of fruit and vegetables as you know that you're aware of. It's so important. You mentioned that there are social media groups, support groups and people that have gone through Flox therapy, Flox side effects and adverse reactions. What are these groups? Are they on Facebook or some other platform?

Lauren

They're everywhere. So I mostly use Facebook, but they're on Reddit. I'm kind of a little on the older side, so I use a lot of Facebook. just to, type in flux or fluoroquinolone or cipro and about a dozen pop up. And it's kind of a, it's kind of a double-edged sword because you get, you get, I have great friends and great support from the flux community, but it's just also, you know, very hard to see what other people are going through. It just kind of reaffirms how dangerous and sad and devastating this condition really can be. on Thanksgiving, I open my social media and someone says, I flocked from ear drops and now I'm gonna put a gun in my mouth. You know, or, you know, yeah, one of my first friends that I made when I discovered that I had been flocked and I joined the flocks community, her name was Elizabeth. She committed suicide right after Christmas in 2024. So, it's really, it's terrifying, when you see this condition that you have and that you suffer so much from, to see people either talk about suicide or people, fly to, Switzerland to be euthanized, which happens in the community as well. to be inundated with that on a daily basis, sometimes I need a little bit of a break from the social media, just for my own mental health.

Daniel

I completely get that as well. And so what's next for you? I know that you've given a couple of articles and talks at various newsletters and newspapers, particularly in your home state. Are you looking at expanding any of that?

Lauren

So I do admin for a support group, but what I'm really active in right now is the advocacy. And on May 13th, Dr. Bennett and I have a new round of lobbying day that we're doing in Raleigh at the North Carolina General Assembly. We have four meetings set up with state senators. And I'm meeting with the legislative assistant for Senator Ted Budd here. And I've put in a request to meet with the attorney general to see if this is a consumer protection and public safety issue. So I'm really hoping that I can get some higher level meetings and really get some meaningful regulations and recognition put in place for sufferers of this.

Daniel

You need to drop a note to RFK.

Lauren

He has actually. In 2022, he did a social media post on fluoroquinolones and the dangers of them. So we have been trying to get up with him. So we hope he would do something about this. Right. Dr. Bennett, you know, Dr. Bennett and I talk often and he's a wonderful asset to the community. And I was saying, the squeaky wheel gets the grease. And he says, well, get, he says, he says, get squeakier. So I'm like, I figure, you know, I crack my knuckles and I'm like, okay, I'll just, I'll squeak away. Yeah, but you know, just.

Daniel

You're an amazing person for what you've been through. And I'd love, I love that you're getting behind the community and you're an advocate for all of this because it's, you know, we need people like you in the world. who did this sort of thing, and we're so grateful. And that purpose you bring will certainly help a lot of people. So thank you very much. And do you want people to get in contact with you or any of your organizations?

Lauren

Definitely. But the last thing that I wanted to mention, and Dr. Bennett would love for me to mention this as well, is Dr. Bennett at USC, he took mice and did an animal trial of fluoroquinolones. and he injected him and his protege Raj injected mice with Cipro and it made all the mice sick. They wouldn't run through the maze. They wouldn't eat. They wouldn't hang from the handlebar. They wouldn't socialize. So how this ever passed from animals to humans, you know, I guess the humans became the guinea pigs. But I would absolutely love for people to Get in touch with me. People can just email me if they want. Just my name, Lauren Sikonen at Gmail.

Daniel

I'll put it in the show notes.

Lauren

Oh, sure, sure, sure. Thank you.

Daniel

Okay, no worries. I actually have read Dr. Bennett's work on the mice study. Quite amazing. One asked the same question. How did it get approved as a drug if it was so damaging to mice? And who knows?

Lauren

The drug companies, they already had invested in this class of antibiotics. And I guess they wanted to make good on their investment. And when I'm struggling with this every day, I think a couple of different things. I'm glad I could make the drug companies $50 to ruin my entire life. And then I think this isn't going to happen to my kids. because they know, my little girls, they go to school, they're still in elementary and they tell, they're warning their friends because they don't want this to happen to their friends or their mothers. And then I think, how can I get through one more day of this? I'm not sure I can do one more day. And I'm like, they messed up the wrong girl. They're gonna, you know, I'm not ever, ever, ever gonna let up on this.

Daniel

I love that. I love your attitude. Just for the listeners, because most of our listeners are in Australia, the drugs fluoroquinolone in Australia is often called ciprofloxacin, norfloxacin and moxifloxacin. So they're the most common, although there are I think about 80 odd drugs that use this chemical. They're the most commonly prescribed.

Lauren

They put it in ear drops and eye drops and someone can sustain the same amount of injury just from ear drops, eye drops. So check for anything that says Flox. And my parting piece of advice would be always Google your medication. Always Google it.

Daniel

Lauren, thank you so much for your time. I'll let you go and rest now. Best wishes to you. And please reach out if you ever want to talk again.

Lauren

Thank you so much for the time, Doctor. I appreciate it.

Daniel

No worries. You take care.

Lauren