If there’s something that bothers me to no end, it’s when someone insults my intelligence. When people deny fluoroquinolone toxicity, an extremely horrible thing that happened to me, assume authority, and insult my intelligence, it’s probably the worst thing ever. Here are a few things you should never say to a floxie:
1. “I’m sorry this happened to you, but…”
If you’re going to end that thought with a “but,” we know that you’re not actually sorry. We usually get this from an acquaintance – maybe someone from high school or someone we just met. Maybe this is coming from your brother’s ex-girlfriend from 6 years ago who you’re randomly still friends with on Facebook. The thing is, if you’re insulting someone’s intelligence and then pretending you care about what happened to them at the same time, we can see right through it.
2. Anything that insults their intelligence
Regardless of whether you are a medical professional (even a doctor), you might want to consider that someone who nearly died from a reaction to a drug and researched their way to good health over a matter of months/years probably knows enough about this topic to have a decent, solid opinion on it. Most of us have read nearly every study done on fluoroquinolones, fluoroquinolone toxicity, magnesium deficiency, fluoride toxicity, and anything else that’s related. I know that seems insane, but this is a highly educated community. Since doctors can lose their license just for admitting you had an adverse reaction since they may have (usually) prescribed against protocol. That said, we have to do our own research to know what happened to us molecularly in order to figure out how to help us heal. We have groups and lists of verified research (yes, scientific evidence from known medical journals and schools like Nature, Harvard Medical School, Mayo Clinic, Johns Hopkins, etc etc) not only pointing to the reality of fluoroquinolone toxicity, but showing how much damage it can inflict on someone intracellularly. Unless you are being respectful and you’re genuinely curious, we don’t have to waste our energy to share those many articles with you. A simple Google search will do, or you can check out this lovely list of studies compiled by author/floxie Amy Moser (it’s at the end of her blog post). We also have lists of doctors who stand by us and can help us heal, which so far is only functional and integrative doctors who specialize in toxic reactions to drugs, heavy metals, and other stuff like mold.
3. “The medical community agrees…”
First of all, the medical community is rapidly changing and if you are going to echo the same words that most doctors or health professionals have said to us, time-and-time again, we don’t want to hear it. We already know what you are going to say and it still gives us PTSD from the times we went from doctor to doctor, wasted thousands of dollars, and had 50+ different tests taken to “diagnose us” when they wouldn’t even consider the possibility that it was fluoroquinolone toxicity, even if we had all of the symptoms. Let me guess: “it is extremely rare, it is safe, there are not enough negative symptoms to take it off the market, no one knows the numbers of how many people have been hurt, it has saved many lives, we use it all the time, it is commonly prescribed, it is a broad-spectrum antibiotic, I prescribe this all the time, it does not trigger auto-immune disorders, the symptoms are not severe enough, etc etc etc etc”
Psst! We’ve heard it all before and whatever you say won’t convince us of anything. We know the truth, we know what some people believe to be the truth, and anything you’re saying (or, repeating, really) is only solidifying our distrust in the medical field and the lack of empathy we have already dealt with tenfold, even if some of what you’re saying is right (we’ve still heard it a million times and it doesn’t help).
Trust us and understand that maybe you don’t know everything about fluoroquinolone antibiotics. I know you haven’t read every study and I know you trust what UpToDate* says because you don’t have the time to research every little reaction to every little drug on the market. Who has the time but people who were left disabled and unable to walk? Who cares but those affected and their loved ones?
Also, bullying someone or insulting the intelligence of someone who has been harmed by any kind of pharmaceutical not only does not help you win arguments or look like the “one on top,” but it makes you look really, really bad. You may make yourself feel better by echoing these same phrases that we’ve heard a million times, but you’re making us (and any of our fellow floxed friends) feel awful and possibly trigger some lingering PTSD.
Oh and they’re teaching fluoroquinolone toxicity in med school, btw. They are teaching future doctors about how extremely dangerous these drugs can be and how to prescribe them with caution/only in an emergency. I can’t provide a link to that information because it was merely passed on from former fellow classmates in my pre-med college courses who are currently in med school and wanted to make me feel better. I’m not surprised if they skipped that chapter in pharmacy school.
4. “This is rare.”
Thank you, yes, this is our favorite one. If 10,000+ people who know they have been floxed, who are active in the community, have been severely affected and likely disabled (either permanently or temporarily) is considered rare, then okay. I guess compared to the 7+ billion people on the planet, 10,000 people is only 0.000143%… however, 7 billion people were not prescribed a fluoroquinolone antibiotic. So, I’m not sure how many people are prescribed fluoroquinolone antibiotics. There are no numbers for that nor are their numbers for how many people have been affected, really. My number isn’t counted by the FDA nor Bayer-Monsanto because I refused to provide the name of my doctor and throw him under the bus. He was a nice guy and really had no idea. He doesn’t deserve to lose his license when 13 of my other doctors said they would have done the exact same thing.
Anyway, Dr. Jay S. Cohen had been researching this at UC San Diego before he passed away, the Chicago Tribune cited a study that found a fifth of a 490 person sample size developed severe side effects (is that rare to you?), and The Ecologist wrote an article about how people have died from fluoroquinolones in the UK. That’s only three links, too! We have a plethora.
From this information, you may choose to argue the whole Flying Spaghetti Monster argument, that neither side can really prove the other exists without any hard facts. Unfortunately for you, many studies back this up and also unfortunately for you, that’s no argument when the side effects are this severe.
So yeah, we know what we’re talking about and studies + doctors + the media backs us up. Just don’t even bother, please.
5. “Leave it up to the professionals.”
I’m sorry, but you literally just graduated with your PharmD. There are floxies who were former doctors, nurses, nurse practitioners, PAs, and yes, pharmacists. Please see #2 and understand that we probably know more than you do on this subject, especially if we’re a few years out of a reaction. My 3 best doctors all said that they did not know much on the subject, that not too many people in the medical community do. If Big Pharma pays your rent, I’m going to assume the same goes for you. Unless you have done research on fluoroquinolone toxicity in a lab, we won’t take you seriously. Must I reiterate? Yes. We are very well-educated on the topic.
One of my doctors (now my primary) learned about these severe side effects, especially the possibly permanent tendon damage, and decided that this was enough for him to stop prescribing fluoroquinolones entirely. He has over 20 years of experience. Will you respect his opinion/fact dropping over ours? Do I need to give you his phone number or something? Scratch all that – can you just respect that I went through a horrendous experience and accept that I may know a lot more about a subject matter than you do in your own field of study? Okay.
6. “You don’t know what you’re talking about.”
Oh yes, we do.
7. “Have you considered seeing a psychiatrist?”
I would love to be able to afford a psychiatrist for the depression I’ve had since I was 12, but I’m not making this up. None of us are. If you look up the side effects of this drug, you will notice that many of our complaints link up. We understand that, many times, seeing a psychiatrist is not because the doctor/PA/etc thinks you’re insane, but because you may need psychiatric help to deal with the matter. However, this might be best left to a social worker, so if you suggest a psychiatrist, we’re going to assume you think we’re making it all up and that we spend our time on WebMD with severe Munchausen’s.
The unfortunate fact of the matter is that many of these symptoms, although extremely severe, are invisible to the human eye. Many tests do not show it. It won’t show up on a blood test. It won’t show up on an EEG, an EKG, and sometimes you will find white matter on a brain/cervical spine MRI scan. Usually this happens in extremely severe reactions or with elderly people who may have had white matter prior. I digress.
It is very difficult to comprehend that someone may be telling you the truth about a horrible reaction that you may not want to believe or cannot verify. Maybe you feel inadequate as a healthcare professional because these reactions place blame on the medical field and not on genetics or any other varying factors. It must suck to realize that reactions are not rare and that your prescriptions do hurt people sometimes.
In these cases, it is best to put your ego to the side and practice empathy. This is when you need to practice empathy the most. Believe us. I didn’t spend $5k and moved back into my parents’ house in the middle of nowhere for fun. I doubt any of the other 10,000+ did either.
*If you are not familiar, UpToDate is an app used widely in hospitals that is essentially the “SparkNotes” of pharmaceutical drugs. Black box warnings are at the bottom of every drug, by the way. Cipro’s page does not even list every black box warning.
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