Tag Archives: stories

Write for Floxie Hope

Are you interested in sharing thoughts, opinions, or advice with others in the “floxie” community? Would you like to use the Floxie Hope platform to reach your fellow floxies?

If so, I would like to invite you to write a guest post for www.floxiehope.com (this site).

There is so much wisdom and insight in this community. I see thoughtful and insightful posts in the comments on this site, and in the various facebook groups that focus on supporting victims of fluoroquinolones. Unfortunately, so many wonderful, valuable comments (either on this site, or on social media) get lost as newer comments rise to the top. One way to preserve thoughtful comments is to turn them into blog posts on floxiehope.com.

I welcome all insights into fluoroquinolone toxicity to be published on floxiehope.com. Hopeful posts, or those about your recovery journey, or things that have helped you, are of course welcome. I want this site to have hope and recovery as its base. However, I also welcome posts that explore the less hopeful aspects of fluoroquinolone toxicity. If you want to write a summary of a journal article about fluoroquinolone damage, or if you want to write a post that connects the symptoms of, for example, fluoroquinolone toxicity to lupus, I’m happy to publish something like that too. I’m open to other suggestions as well.

If you are interested in writing a post for floxiehope.com, please contact me through this form:

Thank you in advance for any consideration that you give to contributing to floxiehope.com! All contributions to this site are greatly appreciated!

 

 

 

Is Big-Pharma Silencing You?

Every once in a while someone asks me if I’m afraid that Bayer or Johnson & Johnson will retaliate against me for speaking out about the dangers of fluoroquinolones, and specifically the fluoroquinolones they manufacture, market, and distribute–Cipro and Avelox by Bayer, and Levaquin by Johnson & Johnson.

The answer is no.

No, they haven’t done anything bad to me, and no, I don’t think or fear that they will.

Not that corporate pharmaceutical companies like Bayer and J&J haven’t been evil before–they have, and I’m sure they are currently being evil, and will continue to be evil into the future–I just don’t think that they’ll be evil or vindictive toward me.

As a patient, patient advocate, and blogger, I don’t think I’m on their radar. Perhaps I’m naive for thinking that–I just have a hard time believing that big bad Bayer actually cares what little me (Lisa) has to say. In some ways, I wish they did. If they cared, it would be because they felt threatened, and to be capable of threatening big-pharma would be pretty amazing. I don’t think I’m on that level though–for better or for worse.

When I first started this site I asked an attorney how I should protect myself. She said, “always tell the truth,” and “they can’t argue with your story – it’s yours.” Just like my story and truth are valid, your story and truth are valid too. This site has my story, and the stories of others like me who have been hurt by fluoroquinolones. Our stories are true. They are our testimonials. They are what happened to us. No one can take away our experiences, our truths, or our stories. Our stories are valuable beyond measure, and they are making a difference in how people think about fluoroquinolones specifically, antibiotics generally, and even about how pharmaceutical reactions are connected to various illnesses and symptoms.

I want everyone to be empowered to share their story. Stories of pain and injury caused by fluoroquinolones are important and they matter. So, it bothers me when people refrain from telling their stories/truths out of fear that Bayer or J&J will retaliate against them. I can’t know what will happen to anyone in the future, but I can tell you that over the past 4+ years of running this site, having my story of fluoroquinolone toxicity available, and writing about the dangers of fluoroquinolones, neither Bayer nor J&J have done anything bad to me. (And while this means that I’m not as threatening to them as I want to be, it also means that I’m not having my life ruined, and, well, that’s a good thing IMO.)

What bothers me even more than fear-based self-censorship of patients is fear-based self-censorship of scientists, researchers, and doctors. A floxed friend approached a research scientist she knew personally and professionally to ask if he would do some research into fluoroquinolone toxicity, and he declined while flippantly saying something about not wanting to jeopardize his future funding prospects. I have no idea whether or not researching fluoroquinolone toxicity would affect this research scientist’s future funding prospects, but the fact that he fears pharma reprisal, and is willing to overlook horrifying fluoroquinolone reactions in his friend and colleague just to avoid the possibility of big-pharma’s reprisal, is bothersome. Unfortunately, reluctance to take on and question pharma seems common among researchers. As the saying goes, “don’t bite the hand that feeds you,” and so much research (even academic research) is funded, at least in part, by pharmacuetical companies.

Pharma money controls the conversation. They don’t have to make overt threats. They don’t have to ruin the lives of scientists (though they do, as seen in the story of the battle between researcher Tyrone Hayes and big-ag chemical giant Syngenta or the destruction of Andrew Wakefield’s career over his questioning of the effects of the MMR vaccine on the gut biome). They just have to control the purse-strings, and many people will fall in-line.

When research scientists limit the questions that they are willing to ask in order to avoid rocking the pharma boat, they are doing us all a dis-service. There is nothing thoughtful, curious, righteous, or even scientific about failing to research adverse drug reactions out of fear of reprisal from pharma, and drugs will continue to be more and more dangerous if all incentives are for research scientists to look away. I hope that my friend’s friend is unusually timid, and that most research scientists are willing to challenge big-pharma. Though I hope that, I don’t believe it. I believe that most research scientists are falling in-line with what their funders want, either consciously or unconsciously, and that because of biases toward their funders, we, as patients and consumers, are less safe.

I have hope that individuals will get over their fear of big-pharma, and speak out about the harm that they have experienced as a result of fluoroquinolone toxicity or other adverse drug reactions. (Shout your truth – tell your story – it’s empowering – trust me, it really is!) I even have some hope that individual scientists will face their fears and confront their big-pharma funders. But I have less hope that the system of corporate, academic, and even government “science” will go against the big-pharma, big-ag, and big-chemical giants that fund and feed them. It’s too scary. Even if the fear is largely self-inflicted, it’s still too scary for most people to question and challenge paradigms.

When I got floxed, I couldn’t help but question my existing paradigms. A pharmaceutical, an ANTIBIOTIC no less, hurt me. It made me ill for a long time, and there was nothing that doctors could do to help me. I didn’t gain any acknowledgement, support, or solutions from traditional doctors (some people do though, everyone’s experience is different). It made me realize that when the medical system hurts people, they don’t know how to put them back together, and all my assumptions about the ability of the medical system to solve human health mysteries went out the window. I realized that the doctors in the Western medical system have no idea how to treat complex illnesses like fluoroquinolone toxicity (or other multi-symptom, chronic illnesses), and that the patients dealing with mysterious illnesses are largely on their own. When I realized that pharmaceuticals are hurting people and leading to chronic illness, I started to question whether or not the good done by pharmaceuticals is worth the harm. I started to see that many of the illnesses of modernity can be linked to pharmaceuticals (and antibiotics specifically, and fluoronated drugs specifically), as well as the endocrine-disrupting chemicals of big-ag and other corporate chemical companies. My paradigm shifted when I got hurt by ciprofloxacin, so it wasn’t a risk to my world-view to actively criticize Bayer, J&J, or the other pharmaceutical companies after-the-fact. There are many obvious disadvantages of getting hurt by ciprofloxacin and other pharmaceuticals, but a silver lining was that my world-view shifted, and my fear dissipated.

I’m not afraid of big-pharma. Maybe it’s because I’m naive about their power, influence, and ability to ruin my life. Maybe it’s because I’m not a threat to them, and neither of us have any reason to fear the other. But I like to think that I don’t fear them because my world-view doesn’t give them power any more. Of course they have actual power–they have money, influence, and the ability to poison and hurt me, every other human, and the earth–but they no longer have the power of me believing that they are the answer. I don’t believe that they are the answer. I believe that they are the problem. And I believe that challenging them is the right thing to do. I also believe that answers to the problems caused by pharmaceuticals are in the stories of patients who are willing to speak out about what happened to them, and in the willingness of researchers and scientists who are willing to buck-the-system and question the pharma paradigm. Some bravery is required on behalf of both patients and scientists who question and challenge big-pharma. The bravery is worth it though, and others may find, like I did, that there is nothing to fear but fear itself.

 

 

 

Tell Your Fluoroquinolone Toxicity Story

I encourage every person who has been hurt by fluoroquinolone antibiotics (or any other pharmaceutical) to tell his or her story.

Telling your story of pain caused by fluoroquinolones can be cathartic and relieving. In writing your story, you are saying to yourself and others, “My pain is real. I was hurt by a prescription drug. It happened to me. Listen, because this is important.”

These stories ARE important! Patient stories are important for advocacy, for warning others, for changing minds, and more. The world will be a better, safer, place if physicians and patients alike are aware of the adverse effects of fluoroquinolones and all other drugs. Patient stories help people to understand the severity of adverse drug reactions, so that they understand the real risk associated with each prescription drug. Neither our doctors nor our friends are psychic, and they need to be told about adverse drug reactions in order to understand them. True stories about the effects of fluoroquinolones on individual lives vividly illustrate the risks of these drugs—much more than studies, or data, or warning labels.

Patient stories can also help researchers to understand the real-world effects of pharmaceuticals, and the direction that a researcher chooses to look can be influenced by patient reports and stories.

Because patients reported their symptoms to the FDA, the warning labels for fluoroquinolones have changed to note that peripheral neuropathy is a potentially permanent side-effect of fluoroquinolones. Patient reports and advocacy also led to the November 5, 2015 FDA meeting where the Antimicrobial Drugs Advisory Committee and the Drug Safety and Risk Management Advisory Committee decided that the current warnings on fluoroquinolone labels are not sufficient. We still have a long way to go, but it should be acknowledged that patients, and their stories, are driving the FDA to action, and that is quite special and unusual.

Reporting Fluoroquinolone Toxicity to the FDA

Please, even if you don’t tell your story to anyone else, report your adverse reaction to the FDA. Instructions on how to report your reaction to the FDA can be found here – http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm.

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Telling Your Story of Fluoroquinolone Toxicity on the Internet

If you would like to tell your story on a web site, there are a few options:

The Fluoroquinolone Effects Study

Please, please, please also tell your story to the researchers who are conducting the Fluoroquinolone Effects Study. The Fluoroquinolone Effects Study is being led by Dr. Beatrice Golomb and it is through UCSD. The Fluoroquinolone Effects Study is a chance to tell your story in your own words to scientists who are studying fluoroquinolone toxicity. More information about the study can be found here – http://www.fqstudy.info/Fluoroquinolone_Effects_Study/Welcome.html.

Media Coverage of Fluoroquinolone Toxicity

Hundreds of people have spoken out to the media about fluoroquinolone toxicity. Thank you to each of you who told your story! I encourage all of you to reach out to the media, because even though many of our stories have been told, many more are needed. Write letters and emails, call your newspaper editors and tv reporters. Please do whatever you can to amplify your voice when telling your story.

People are Listening

People are listening to our screams and our stories. I regularly hear from people who say something along the lines of, “I requested a safer antibiotic because I heard from you that Levaquin is dangerous.” I hear from doctors, nurses, pharmacists, and other medical professionals who are getting information about fluoroquinolone toxicity from Floxie Hope. The number of people in The Fluoroquinolone Toxicity Group on Facebook has increased steadily to almost 5,000 people. Many of those people share information about fluoroquinolone toxicity with their friends. The word is getting out, and that’s a very good thing!

Thank you to all of you who are telling your stories of pain caused by fluoroquinolones! These stories are important, and I even think that it’s healing for you to tell your story.

 

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Floxie Twilight Zone

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Kristin Weber put her story of fluoroquinolone toxicity on Hormones Matter.  I encourage you all to read it:

FLUOROQUINOLONE POISONING: A TALE FROM THE TWILIGHT ZONE

It is beautiful, thoughtful, poignant, honest and heart-wrenching.

Here are some of my favorite quotes from it (all are direct quotes, re-printed with the author’s permission).  She writes beautifully and I get shivers reading her story.

“Now imagine spending three entire years dealing with this, suffering in ways you never imagined possible, every day bringing a new version of misery. Some days you can’t walk without pain. Some days your hands and feet burn all day. Some days a migraine slurs your speech, and makes you feel cross-eyed with distorted limbs, and joints twisted up like a pretzel. Some days you feel electrocuted; other days fatigue leaves you with leaden limbs, a supreme effort required for every move. Some days you’ll experience all of the above, and then some.”

“Your small child will grow into a young adult. Much later, you’ll grieve the time you lost with him while in a sickly fog, struggling to work and maintain a semblance of a life. You’ll find yourself making post-death requests to the universe, just in case there is an afterlife, to please let you come back and spend that time with your child. Please let you immerse yourself in those precious, fleeting moments, and enjoy and love him without the weight of illness and misery and constant worry that overshadows any joy life holds.”

“Then, a miracle will occur: like a phoenix rising from the ashes, little glimmers of your long-lost self will begin to return. You’ll remember who you are beyond this sickly, lost person. You’ll realize that beyond your suffering lies an untouchable spirit that will always exist. That illness cannot break you. It may seem to at times, but it cannot change who you are at your very core, no matter how much pain or suffering your body is experiencing. This thought will comfort you in inexplicable ways.”

“The second gift will be in recognizing the lessons which surviving hardship brought you – lessons about perseverance, inner strength, self-worth, confidence, humility, compassion, and forgiveness – and realizing you wouldn’t trade the growth born from these lessons, even if it meant reliving your health struggle all over again. (Though you will still long to have learned them less painfully, would that have been an option.) You’ll realize that, paradoxically, your isolating, alienating illnesses indirectly revealed your underlying connection to everyone you share the world with. You’ll know that although you wouldn’t consider illness a friend, it has certainly been one of your most powerful teachers.”

“You’ll know that saving even one person from the suffering you endured will be worth the potential disbelief, and even ridicule, that may come your way through the telling of your story. You’ll know that you no longer need anyone else to validate your illnesses, or any of your experiences, for that matter. Because, ultimately, your health ordeal has taught you to stand in your own truth with confidence – no matter what others believe, no matter how they might judge you.”

“We also need to change our response to people living with mystery illnesses our medical establishment does not yet acknowledge or understand how to treat, hopefully with more open-mindedness, curiosity, and compassion instead of judgment and dismissive skepticism. Think about this: didn’t most newly discovered illnesses, at one time, begin with a general lack of understanding and acceptance within the medical world? To act as though today’s medical knowledge base is static and impervious to change via new discoveries is misguided and harmful. But every time people – especially doctors – dismiss patients with a condescending disbelief in their illness, clinging tightly to old paradigms, they are effectively halting further scientific understanding for themselves, and potentially the rest of the world as well. They are also denying vital support, empathy, and care to people who suffer.”

Every word in FLUOROQUINOLONE POISONING: A TALE FROM THE TWILIGHT ZONE touches my soul.  It’s a profound and beautifully-written story, and I encourage you all to read it in its entirety (it’s 4 pages long, be sure to scroll through each page) and to share it with loved ones.  Thank you, Kristin, for speaking out so eloquently.