Tag Archives: FDA Failure

Victory at the FDA

Lisa Testifying at the FDA

 

I wrote a post about the FDA committee hearing about the risks of fluoroquinolones for Hormones Matter. Here it is:

Victory at the FDA for Fluoroquinolone Victims

As Chandler Marrs noted when she posted it on Facebook (BTW, shares are appreciated!):

“Who’s to say the experts know more than the patients? They don’t. This took years of patients speaking out, all the while the experts were silent. I am so impressed with the folks who were ill themselves, but still managed to launch a movement that was finally recognized by the FDA. Though there is still much to do, their stories and their struggles provide a guide to others. Suffering in silence does no one any good. Speak out.”

Indeed. I am very proud of all of the floxies who made this happen. Thank you to all!

 

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I HOPE for Change

This site was started to give hope for healing to those suffering from fluoroquinolone toxicity. Stories of healing and recovery are shared on www.floxiehope.com so that the people who are going through the destruction done by fluoroquinolones that we refer to as “floxing” (as one Floxie noted, it’s cuter than calling it disability brought on by a chemotherapeutic drugs masquerading as antibiotics) can see that others have recovered – and so that they can learn lessons from those who have gone through fluoroquinolone toxicity and healed.

More than the lessons and techniques used for recovery though, I think that the important thing that the stories convey is hope – hope that recovery is possible. Recovery happened for the people who have shared their stories on floxie hope – so there is reason to hope that you will recover too. Sarah, Bill, Crystal, Ruth, Sharon, Brian, Keri and all of the other people who have shared their stories on floxiehope have recovered. If they can do it, so can you. There is hope in knowing that other people have emerged from this horrible toxicity syndrome. And HOPE, I believe, is healing. It helps to believe that there is a light at the end of this tunnel. It helps to know that it’s possible for the spiral of ill-health, and new, scary symptoms, to come to an end; and that recovery and a return to health is possible.

None of the effects of fluoroquinolones on the body or brain are “in your head” or a choice, but, with that said, the mind is a powerful thing. Having hope, and faith that this will pass, and that your health will improve, is important and powerful. HOPE is healing.

In many of the posts on this site, and articles linked to through this site, I have strayed from a message of hope for healing/recovery. I have posted essays that are angry, fearful, questioning and/or accusing, not hopeful. Some of these posts/essays have scared many of you. Some of them have probably pissed you off. Some of them have probably made you feel less hopeful about the prospects for your future health.

Understandably, I have gotten push-back from people in response to those posts. People have said, “I thought this site was supposed to be about HOPE, not ____” (fill in the blank with any scary, intimidating fluoroquinolone related topic). I’ve been thinking about the sentiment that they have expressed a lot lately, and these are my thoughts:

First, I’m sorry. I’m sorry for inducing fear and/or pissing you off. The fact that fluoroquinolones do really horrible things to cells, and that I am really angry at Bayer, J&J, the FDA, doctors, pharmacists and everyone else responsible for this mess, does not detract in any way from the fact that people can, and do, recover from fluoroquinolone toxicity. If it’s helpful, please skip my downer posts and just read the stories on this site. The stories are reason for optimism and hope. They are stories of perseverance, strength, optimism through adversity and healing. They are meant to convey HOPE for healing.

Second – I’m going to defend myself a bit – I think that the scary and/or intimidating topics are hopeful – they’re just hopeful in a different way. They’re not about hope for healing or recovery, but they are about hope for other things – like information, justice, answers, and stopping this insane system that allows mineral chelating, mitochondria destroying, multi-symptom chronic illness inducing chemicals to be given to people to treat urinary tract infections.

The way that things are now is not okay. Systems are broken and people are getting hurt by those broken systems.

I HOPE that the absurdity of people needlessly being hurt by fluoroquinolones is realized – by everyone.

I HOPE that doctors start realizing that the people who come into their offices with multi-symptom, chronic, mysterious ailments after a course of fluoroquinolone antibiotics are suffering from fluoroquinolone toxicity. I HOPE that they realize that these reactions are not as rare as they have been led to believe. I HOPE that they think twice about prescribing fluoroquinolones again after they recognize fluoroquinolone toxicity in their patients. I HOPE that the information on this, and other FQ toxicity related sites, gives them the information that they need to see that fluoroquinolones are dangerous drugs.

I HOPE that people gain information from this site with which they can become empowered. I HOPE that the articles and posts on here give you the information that you need to understand what is going on in your body. I HOPE that you are able to take the information that you gather from this site and share it with your doctors, friends, family, etc. I HOPE that they are able to gain understanding of what you are going through from reading about fluoroquinolone toxicity.

I HOPE that the FDA quits being inept and more tightly regulates fluoroquinolones and other dangerous drugs.

I HOPE that we all gain answers to the question of, What in the world is going on in my floxed body??? I HOPE that I (or other people) am able to gather up the articles and information that is necessary to answer that question. And, with that information, I HOPE that a protocol is established that helps people to heal from fluoroquinolone toxicity.

I HOPE that we all gain justice. I HOPE that Baron & Budd, or any other law firm that brings a suit against Bayer and Johnson & Johnson for the damage that their drugs have done to people, wins and that all victims of fluoroquinolones are adequately compensated for their pain and suffering. I HOPE that the lawyers generally stop pussy-footing around with lawsuits for individual symptoms and start bringing lawsuits against FQ producing corporations for inducing multi-symptom, chronic illness in victims. Because that’s the truth – it’s what’s happening. I HOPE that the top executives and scientists at the corrupt pharmaceutical and big-ag companies that are poisoining us all are charged with, and found guilty of, crimes against humanity. I HOPE that justice is served – in every way possible.

I HOPE that all of the people and institutions that are supposed to be keeping the pharmaceutical industry in check (the FDA, the media, the justice system, conscientious doctors, etc.) – who are currently failing – start DOING THEIR JOBS.

And of course, still, I HOPE for your healing. I HOPE for your recovery. And I HOPE for the continued wellness of those who have healed.

This site is about HOPE. It’s about HOPE for change in just about every area to do with fluoroquinolone toxicity. It’s about HOPE for individual change – mainly the healing kind. And it’s about HOPE for institutional change. I HOPE it comes soon – because too many people are getting hurt by cipro/ciprofloxacin, levaquin/levofloxacin, avelox/moxifloxacin and floxin/ofloxacin. It’s not okay. It needs to change. I HOPE it changes.

 

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Seeing through the Matrix

Do you remember that scene in The Matrix where Neo (Keanu Reeves) is offered the pills by Morpheus (Laurence Fishburne)?  He has the choice, he can take the red pill and see the real world, or he can take the blue pill and remain in the façade world, the Matrix.  He takes the red pill and he breaks out of the fantasy façade world and enters the real world – a place of destruction and suffering.

I took the red pill.  I actually took 14 red pills.  I’m not sure which one triggered the reaction in my system that changed my perspective entirely, but I see the world differently now, as a result of being floxed.  It would be horribly narcissistic for me to say that I see the “real” world now and that few others do, and I don’t mean that.  What I mean is that I see the world differently now than I did before, and that there are some things that I believe to be true that never even occurred to me before.  I broke out of my own personal Matrix, with those pills; those 14 fateful, life-altering pills.

This perspective shift is not unique to me, or to being floxed.  Whenever people experience a betrayal, whenever something that they assume is safe and protective turns out not to be, their perspective changes and they see the world differently.  Usually this is a bad thing.  People become jaded and bitter, assuming that they are going to get hurt again because they got hurt in the past.  I would like to think that this hasn’t happened to me.  I’m still pretty trusting.  But I do see things differently.  I’ll let you judge for yourself if these things that I now believe are jaded and bitter or if they reflect the “real” world.

I now see:

  • No one is looking out for patients.  The FDA isn’t (duh).  Doctors, Pharmacists and the other people directly involved in the medical system aren’t.  The legal system isn’t.  No one is.  The medical system doesn’t get to be the 4th leading cause of death of Americans by having the proper checks and balances that focus on patient safety and protection.  (Of course, there are plenty of individuals who are looking out for the best interest of patients, but the system, as a whole, is not.)
  • Much of medicine relies on magic, not science.  Officially, the mechanism by which fluoroquinolones cause tendon, CNS, kidney, liver, etc. damage is unknown. (source 1)  Scientists and doctors state, most of them truthfully, that they have no idea how these drugs mess people up.  It is also claimed that much is unknown about the way these drugs work to kill bacteria – the thing that they are supposed to do.  If the mechanism by which a drug works, and sometimes doesn’t work, is unknown, the reliance is on magic and faith to get the desired outcome, not science.  Doctors claim that their pills and potions are backed up by science, but they’re not.  They’re backed up by faith in a broken system.  BTW – the mechanism by which fluoroquinolones both kill bacteria and damage every cell in a person’s body is by forming a poisonous adduct to DNA.  This was found, then immediately ignored, in 1998.  Here’s the article – http://www.jbc.org/content/273/42/27668.full (source 2)
  • Doctor’s rely on anecdotal evidence all the time, but patients aren’t allowed to.
  • No matter how many peer-reviewed, scientific journal articles show the danger of a drug, doctors will believe that the scientific evidence supports its use until it is removed from the market.  Similarly, no matter how sick a drug makes people, it won’t be taken off the market unless…. I’m not sure…. Because flat-out causing cancer isn’t enough to get Humira (source 3) and Enbrel (source 4) removed from the market.  Perhaps damaging the DNA of humans will be enough to get fluoroquinolones removed from the market (read source 1 and 2), but I doubt that it will be.
  • Fluoroquinolone damage is everywhere.  A large portion of the people who are diagnosed with autoimmune diseases, fibromyalgia, chronic fatigue syndrome, leaky gut syndrome, anxiety, depression, dementia, arthritis etc. are actually suffering from fluoroquinolone toxicity.  (Of course, those diseases are real on their own, and there are many factors that cause them, but fluoroquinolone toxicity is one of the causes that isn’t even considered.)
  • If enough people repeat a mantra enough times, it will be seen as true, no matter what the evidence against it.  It almost makes me laugh, reading articles that point out the damage that fluoroquinolones can do to mammalian cells that follow that presentation of damning evidence with the conclusion that they “have an excellent safety record.”  (source 5)

I could go on, but I’ll leave it at that.

I have largely healed from getting floxed.  I fluctuate between 95-100% of my pre-floxing capacity.  Life has continued.  As I live my normal life, and feel fine while doing so, the memories from being sick fade.  Sickness is no longer my reality.  It is no longer shaping my day-to-day life.  It is no longer warping my perspective and shattering my trust in the medical system.  Normalcy has resumed and the trivial has, again, taken over.  It would be easy for me to go back into the Matrix, the façade world where I don’t understand how “mysterious” ailments occur, and to think that the systems that are in place to protect and sustain us are working as they should.  Undoubtedly, it would be healthier for me to leave my “Floxie” world behind and to go back to what everyone else considers to be the real world.  As a healthy person, I can do that if I choose to.

But I’m choosing not to.  I’m choosing to stay in the “Floxie” world.  I am choosing the version of reality, of truth, that I had when I was sick.  It may not be the healthiest thing in the world for me to do, but it feels like the right thing to do.  People are sickened by these drugs every day.  Their world is shaken to the core when their health, their pain-free, happy, trusting existence is brutally stolen from them.  It seems like the right thing for me to do to continue to see their pain, to acknowledge their struggles, and to fight the broken systems that are perpetuating the sickening of innocent people.  It feels right to stay in the dark and gloomy “real” world and fight the Agent Smith’s of the world who want to keep us trapped and sick.  So I will continue to do so.  The Matrix, with its niceties wrapped in naiveté, is enticing, but I prefer to know the truth.

Sources:

  1.  Sarah H. Elsea, Neil OsheroffST, and John L. Nitissll,  Cytotoxicity of Quinolones toward Eukaryotic Cells: IDENTIFICATION OF TOPOISOMERASE II AS THE PRIMARY CELLULAR TARGET FOR THE QUINOLONE CP-115,953 IN YEAST* Vol. 267, No. 19, Issue of July 5, pp. 13150-13153, 1992 THE JOURNAL OF BIOLOGICAL CHEMISTRY 0 1992 bv The American Societv for Biochemistrv and Molecular Bioloev. Inc. Printed inn.’S.A.  http://www.jbc.org/content/267/19/13150.full.pdf+html
  2. Arkady B. Khodursky and Nicholas R. Cozzarelli, The Mechanism of Inhibition of Topoisomerase IV by Quinolone Antibacterials*  10.1074/jbc.273.42.27668 October 16, 1998 The Journal of Biological Chemistry, 273, 27668-27677.  http://www.jbc.org/content/273/42/27668.full
  3. FDA warning label for Humira – http://www.accessdata.fda.gov/drugsatfda_docs/label/2012/125057s232lbl.pdf
  4. FDA warning label for Enbrel – http://www.accessdata.fda.gov/drugsatfda_docs/label/2012/103795s5507lbl.pdf
  5. Stahlmann R., “Safety profile of the quinolones,” Journal of  Antimicrobial Chemotherapy. 1990 Nov;26 Suppl D:31-44. http://www.ncbi.nlm.nih.gov/pubmed/2286589

 

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