Tag Archives: acknowledgement

Fluoroquinolone Toxicity Featured in NATURE

Fluoroquinolone toxicity is highlighted and featured in NATURE – one of the oldest, most reputable, journals in the world. This is so exciting!!

You can read the article, When antibiotics turn toxic, that was published in Nature on March 21, 2018 HERE.

Here are some highlights from the Nature article:

First, thank you to Dr. Miriam van Staveren whose story was told in the Nature article. She is a physician and a fellow “floxie.” Even as a physician, she had trouble getting her experience of being poisoned by Levofloxacin acknowledged:

“Since then, she has seen a variety of medical specialists. Some dismissed her symptoms as psychosomatic. Others suggested diagnoses of fibromyalgia or chronic fatigue syndrome. Van Staveren is in no doubt, however. She’s convinced that the antibiotic poisoned her.”

Second, the article mentions Fluoroquinolone Toxicity and Fluoroquinolone Associated Disability (FQAD) by name. This is huge! Rather than calling what we are experiencing something like, “a rare adverse reaction,” it is referred to as fluoroquinolone toxicity or FQAD. This is subtle acknowledgement that what we are going through is a syndrome–a thing in itself–not just a “side-effect” to be dismissed.

Third, even though the word “rare” is used throughout the article, and I know that this is annoying and off-putting for all of us who see that fluoroquinolone toxicity is NOT RARE, the article also notes that the frequency of fluoroquinolone toxicity is higher than many assume:

“From the 1980s to the end of 2015, the FDA received reports from more than 60,000 patients detailing hundreds of thousands of ‘serious adverse events’ associated with the 5 fluoroquinolones still on the market (most commonly tendon rupture, as well as neurological and psychiatric symptoms), including 6,575 reports of deaths. The FDA says that the reports of adverse events it receives — sent in by drug manufacturers, by doctors and directly by consumers — cannot be used to reach conclusions about the severity of problems associated with drugs. Still, the fluoroquinolones have attracted more complaints than other more widely used antibiotics. And only 1–10% of adverse events are estimated to be reported to the FDA, suggesting that fluoroquinolones might have harmed hundreds of thousands of people in the United States alone, says Charles Bennett, a haematologist at the University of South Carolina’s College of Pharmacy in Columbia. Bennett is also director of the Southern Network on Adverse Reactions, a state-funded pharmaceutical-safety watchdog, which has been working with people affected by fluoroquinolones since 2010.”

Fourth, mitochondrial damage is noted as a cause of fluoroquinolone toxicity:

“Accumulating evidence, Golomb says, suggests that fluoroquinolones are damaging mitochondria, the power packs inside human cells that evolved from symbiotic, bacteria-like cells billions of years ago. This kind of harm can affect every cell in the body, explaining why a wide range of symptoms can appear and get worse over time.”

Fifth, the article noted that Dr. Charles Bennett, may have found some genes shared by people who are hurt by fluoroquinolones:

“At a conference last September, Bennett reported preliminary data that might hint at why only some people develop serious side effects from fluoroquinolones. He took saliva samples from 24 people who reported neuropsychiatric side effects — such as memory loss, panic attacks and depression — and found that 13 of them (57%) shared a gene variant usually seen in only 9% of the population.”

If there are genes that make people more succeptible to disabling fluoroquinolone toxicity, perhaps those can be tested for before fluoroquinolone prescriptions are written.

Sixth, the article notes the obstacles that scientists, researchers, and doctors face when they question and investigate adverse drug reactions. It is noted that little support or funding for adverse drug reaction research is available, and that many scientists face push-back from pharmaceutical companies when they attempt to research fluoroquinolone toxicity.

Last, Floxie Hope was mentioned in the article. Squeee! What an honor and a privilege to be mentioned in an article in Nature!

“On websites and Facebook groups with names such as Floxie Hope and My Quin Story, thousands of people who have fallen ill after fluoroquinolone treatment gather to share experiences. Many of them describe a devastating and progressive condition, encompassing symptoms ranging from psychiatric and sensory disturbances to problems with muscles, tendons and nerves that continue after people have stopped taking the drugs. They call it being ‘floxed’.”

Those seven points are the highlights of the article, in my opinion, but I suggest that each of you read the article yourself. It’s currently (03/25/18) on the home-page of nature.com. Squee!

*****

 

Review of Through the Shadowlands

I just finished reading Through the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand by Julie Rehmeyer. It’s a memoir about the author’s journey through Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). It’s a beautifully written, thoughtful, insightful look at ME/CFS, and how Rehmeyer got through the harrowing illness and regained her health.

Many floxies deal with horrible, intractable fatigue, and suffer from ME/CFS after getting poisoned by Cipro, Levaquin, Avelox, or other fluoroquinolones. I experienced some fatigue while going through fluoroquinolone toxicity, but I never considered myself to be afflicted with ME/CFS (my fatigue episodes passed relatively quickly–thank God). However, the bouts of fatigue I had were frightening, and going through my own “mysterious illness” gave me empathy for others dealing with under-acknowledged diseases. I became facebook friends with several people in the ME/CFS community, and I gained an even greater appreciation for the severity of ME/CFS and the strength it takes to endure it. It truly is a horrific disease, and the horror of it is only compounded by the lack of acknowledgement it receives.

I hope that Rehmeyer’s book brings attention to ME/CFS, and that people recognize how severe and devastating the disease truly is. And I hope that recognition of ME/CFS brings attention to all multi-symptom, chronic, mysterious illnesses that “can’t be reduced to tidy pathologies or a uniform set of symptoms.” These illnesses are real–they are not “just in your head,” and they are less “rare” than people would like to acknowledge. Yet these illnesses are systematically overlooked because they are too complex to form a single hypothesis around. Autoimmune diseases, neurodegenerative diseases, autonomic nervous system diseases, mitochondrial dysfunction diseases, fibromyalgia, ME/CFS, POTS, EDS, and, of course, iatrogenic diseases like fluoroquinolone toxicity, are complex and multifaceted, and they affect every part of the body and every individual differently. They’re difficult to study, but studying them is important. Ignoring them, and pretending that they don’t exist, isn’t helpful to anyone.

Some parts of Through the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand really resonated with me, and reminded me of my experience with fluoroquinolone toxicity. I’m going to point them out here, along with comments, with the hope that they will trigger in you some of the recognition they triggered in me.

In the epilogue, Rehmeyer states:

“Although I’ve certainly worked hard to improve my health as I have, I also want to be clear: I got lucky. I could have done everything I did and still be desperately ill. I think I get some credit for my improvement, but only some. A big part of it is simple good fortune.”

Yup. I’ve been meaning to write a post about the luck aspect of recovery for a while. Why did I recover from fluoroquinolone toxicity when others don’t? Luck. Pure, simple, unfair, ridiculous, stupid luck. I got lucky. I was able to get into a spiral of health. Early in Through the Shadowlands, Rehmeyer says that health and illness are like valleys between hills, and your state of being is like a marble (or boulder–depending on how big your metaphorical valleys are) that is trapped in that valley. It’s easy to stay in the valley–whether that be the health valley or the illness valley. It’s difficult to push yourself up a hill into the other valley. (Hopefully I’m remembering the metaphor roughly correctly–sorry if not.) I was able to get over that hill, into the valley of health, and I was able to do it without near as much suffering as others. Why? Luck. I’m not a better person, nor did I do more things correctly. I was just luckier.

In chapter 19: Moldy Science, Rehmeyer states:

“Learning all this, I felt as if my brain were quietly exploding. A scientific organization put out a statement that was contrary to science, and scientists couldn’t get it removed for 12 years! How could that happen?

And if respected organizations could sow doubt about whether mold is a significant risk factor for asthma–a link that had been observed in the very first textbook on asthma ever written, in 1698–what hope did I have that science would come to understand my weird illness?”

Science is political. You knew that, right? It’s not supposed to be, but it is, so don’t think it’s not.

Just as there have been scientists silenced about the dangers of mold for decades, there are scientists who recognized that topoisomerase interrupting drugs, like fluoroquinolones, are a very bad idea, and are quite harmful to mitochondrial and bacterial DNA. Perhaps messing with our mitochondrial and bacterial DNA and RNA replication enzymes isn’t a particularly good idea. But if a scientist was to say something as brazen as that he or she would be admonished, and maybe even punished.

Throughout Through the Shadowlands, Rehmeyer seems to struggle with her worldview. Is she a scientist who only does treatments that are backed up by placebo controlled trials, or is she a person who is willing to try anything to get better, even if it has a woo-woo component to it? If she tries the alternative treatments, can she still consider herself to be a skeptical scientist? But if science is failing her, and her fellow ME/CFS sufferers, does it deserve the credence and weight she gives it? After a significant struggle, Rehmeyer seems to settle on the approach that depends more on evidence gathered from her personal experience than evidence gathered in labs. She opens herself up to alternative treatments, and reluctantly finds that they help her. She seems to long for evidence of why they help her, and to struggle with the possibility that they are just placebos. At the end of the book, it seems that Rehmeyer stops trying to find identity in the science vs. alternative medicine paradigm, and she settles into a worldview that identifies her as a person with ME/CFS, who has overcome the disease, and who is now part of that tribe. The scientist and woo-woo tribes are less significant, what is significant is her tribe of fellow sufferers (and her family and other loved ones).

In chapter 11: An Unlikely Hypothesis, Rehmeyer writes about the facebook community of fellow ME/CFS sufferers. She states:

“My attitude toward my fellow patients had already started to soften as I had been exploring the forum more, and on Facebook, I found them endearing, and even inspiring. I saw how they turned to one another not just for advice as on the forum, but for a community and support and a social life after they’d been abandoned by so much of the world.”

I find the floxie community, largely found on facebook, to be incredibly inspiring. They are brave, thoughtful, generous, wonderful people, and I am honored to be among them. I also appreciate the other chronic illness communities, including the ME/CFS community, the POTS community, the floxie community, the other pharma-injured community, the fibromyalgia community, etc. All of these communities of people with chronic, poorly understood diseases are wonderfully supportive and strong, and they are appreciated.

Much of Through the Shadowlands felt familiar. I knew who many of the people were that Rehmeyer wrote about, even when she didn’t refer to them by name. I felt as if I was reading about the journey of a friend (or, at least a friend of a friend), and in some ways, I was. The community of people affected by mysterious, chronic, under-recognized illnesses is small, and we have many fights in common. We’re in this together–fighting for recognition, and cures. If Through the Shadowlands helps those suffering with ME/CFS to gain recognition and acknowledgement, perhaps it will hep floxies and others living with mysterious illnesses too.

I recommend that you read Through the Shadowlands. It’s a good book. It’s a well-written, insightful, thoughtful memoir, and I suspect that it will resonate with anyone suffering from a mysterious illness.

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Happy Birthday Grandma!

grandma

Today is my Grandma’s birthday. Happy birthday, Gram! I hope you have a wonderful day!

My Grandma is one of my favorite people in the world and I love her very much.

My Grandma was incredibly, wonderfully supportive through my journey through fluoroquinolone toxicity. As soon as I said, “I’m sick,” before I even knew why or how I was sick, she took me seriously. When I realized what was making me sick, she never questioned me. She never downplayed or dismissed my experience with fluoroquinolone toxicity–she just believed me. She was always on my side, and it didn’t seem like it ever occurred to her to believe the medical establishment, or anyone else, over me.

When she broke her hip a few years after I got floxed, my Grandma immediately put Cipro on her list of medications that she was not to be given. She knew that it was dangerous because of what I had gone through, and she didn’t want what happened to me to happen to her. Her refusal to take Cipro meant a lot to me. It signified that she believed me, and that she didn’t believe that my reaction was something rare or dismissible. It meant that she listened. I write about my experience with fluoroquinolone toxicity not to relive what happened, or to wallow in it, but to warn people so that they don’t go through the same thing I did. It means a lot when people listen, and it meant a lot to me that my Grandma listened to me, and that she refused to take the drug that hurt me. I’ve never had to fight with a doctor about a fluoroquinolone prescription for a loved one, but, I’m pretty sure that if I did get into an argument with a doctor about whether or not a fluoroquinolone prescription was appropriate for my Grandma, she would take my side.

I am lucky in that I have a lot of wonderfully supportive people in my life. I always felt like everyone in my family loved me and wanted what was best for me. I have always known that I am loved and cherished. I have always known that all of my loved ones were on my side. They are all appreciated!

Not all “floxies” have supportive loved ones. Some people don’t believe that their floxed loved one is really sick. Some people don’t try to understand what their floxed loved one is going through. Some people have family members who are dismissive of fluoroquinolone toxicity, and who don’t believe that it’s “real.” Some people have family members who believe that fluoroquinolones can’t be dangerous, and that adverse reactions can’t be devastating, even though there is plenty of documented evidence that fluoroquinolones ARE dangerous and adverse reactions ARE devastating. It saddens me when I hear of people who are not supported by their loved ones as they go through the difficulty of fluoroquinolone toxicity.

I appreciate the support of all my family members, and, today, on my Grandma’s birthday, I am especially appreciative of her.

You are loved, Gram. Happy Birthday! xoxo

 

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The Gaslighting of Patients

Gaslighting: A form of manipulation that seeks to sow seeds of doubt in a targeted individual or members of a group, hoping to make targets question their own memory, perception, and sanity. Using persistent denial, misdirection, contradiction, and lying, it attempts to destabilize the target and delegitimize the target’s belief.

Gaslighting occurs far too often to patients who experience adverse reactions to pharmaceuticals. Often, it is done by the people patients turn to when they are sick–our trusted advisors, our healers: our doctors.

I don’t think that most doctors mean to gaslight their patients, or that many of them are narcissists or abusers who intentionally manipulate people. I think that most doctors want to heal and help their patients. They use the information and tools that they have to move their patients toward health and well-being.

Yet, gaslighting is occurring.

When “floxed” patients approach their doctors with symptoms of fluoroquinolone toxicity (or FQAD-fluoroquinolone associated disability) they often face denial, derision, and hostility from the doctors who they are requesting help from. The doctors say that the symptoms that the patient is experiencing can’t be from the Cipro (ciprofloxacin), Levaquin (levofloxacin), Avelox (moxifloxacin), or Floxin (ofloxacin), even though most of the symptoms of fluoroquinolone toxicity / FQAD are listed in the 40+ page warning labels. They say that the drugs should be out of the patient’s body, even though the black box warning label notes that fluoroquinolones “have been associated with disabling and potentially irreversible serious adverse reactions.” They say that they’ve never seen a patient who has had an adverse reaction to a fluoroquinolone–and that may be true, but are they looking? They say that delayed reactions can’t happen–but they’re documented. They deny that adverse reactions can happen, probably because they are in denial about the very real possibility that the drugs that they prescribe can cause serious, severe, and irreversible pain to their patients.

Then, they suggest that the patient see a psychiatrist and get on antidepressants.

Some people who experience adverse reactions to fluoroquinolones benefit from seeing a psychiatrist and taking antidepressants (though others are hurt further by both–be careful), and those things aren’t inherently bad, but the implication in suggesting psychiatrists or antidepressants is that patients who are experiencing adverse reactions to fluoroquinolones are crazy. We’re not crazy. Though some fluoroquinolone toxicity / FQAD symptoms are psychiatric, none of the symptoms, not even the psychiatric ones, are choices, decisions, or even the result of being crazy. All the symptoms of fluoroquiolone toxicity / FQAD stem from fluoroquinolone use and the damage done by these drugs.

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When a person, especially a doctor, suggests that all the symptoms of fluoroquinolone toxicity / FQAD are in a patient’s head, they are gaslighting the patient and making him or her feel crazy.

It’s dismissive, it’s obnoxious, sometimes it’s abusive, and it’s always wrong.

It happens all the time though, and I wish that it would stop.

Adverse reactions to fluoroquinolones (and other pharmaceuticals) are real, and they happen more often than they should. Denying that adverse reactions occur, then blaming the victim and telling him/her that he/she is insane, is not only useless, it is destructive. It hurts the patient/doctor relationship, and, more importantly, it hurts the patient. As I said above, I don’t think that many doctors intentionally seek to manipulate or hurt their patients. It’s happening though, and it needs to stop.

In the stories of patient pain and suffering from fluoroquinolones described on Fluoroquinolone Stories and The Fluoroquinolone Wall of Pain, doctor denial and gaslighting are described.

Sherry describes the gaslighting and denial that she experienced after taking Floxin and Flagyl:

“I went from doctor to doctor trying to convince them that these drugs did this to my body. They looked at me as if I had ten heads. They couldn’t believe that these medications could stay in one’s body for that long. I was crazy. I would bring them papers to show them proof and one doctor said to me that the medical community would use these papers for toilet paper!”

Cheryl notes the following experience after taking Ciprofloxacin XL:

“I went back to the pharmacist and told him the reaction I had. He said it can happen and it certainly sounded like I had an adverse reaction but he did not report it. I went back to the doctor how prescribed the drug to me and he did not believe me that I had reacted in that manner. Again, no reporting back to any authorities that I had an adverse reaction. I tried to show him the evidence of how many people have been damaged by this group of drugs and how dangerous they are and I was blown off. He told me he prescribes this drug all the time and has never had anyone react. I beg to differ because I bet people do have negative reactions but because they happen after the drug has been used, the connection between the aching muscles, nausea, anxiety, stiffness etc are not connected to the drug they took a month or more ago.”

There are many others.

Floxies are not alone in getting gaslighted by doctors. In the post “The Unintentional Gaslighting of Women and a Goodbye” Kerry Gretchen describes how her stroke that resulted from hormonal birth control wasn’t taken seriously by the doctors who treated her. Support groups for people who have had adverse reactions to a variety of pharmaceuticals and medical devices are full of patients who are frustrated and hurt when their doctor denies both their pain, and the cause of it.

The pain caused by pharmaceutical injuries is real, and patient pain should never be dismissed or denied. When denial of pain occurs, and patients are told that their symptoms are all in their head, it hurts the patient psychologically, and destroys the trust and bond between the patient and his or her doctor.

Doctors can stop this cycle through listening to their patients, not dismissing or disregarding adverse drug reactions as “rare” or “all in your head,” and being conscious of gaslighting as a phenomenon. Good, thoughtful, kind doctors don’t want to hurt or manipulate their patients, but, in order to maintain their worldview about the safety and efficacy of the drugs they prescribe, they often deny and deflect. Hopefully, with awareness of both gaslighting as a phenomenon, and how adverse drug reaction symptoms appear, the cycle will be halted.

 

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Is Fluoroquinolone Toxicity “Real?”

What is required for fluoroquinolone toxicity to be “real?”

Most of the symptoms of fluoroquinolone toxicity are listed on the warning labels.

Tendinitis? Yup, listed on the warning label. Muscle weakness? Yup, that’s there too. Cardiovascular collapse, loss of consciousness, tingling, pharyngeal or facial edema, dyspnea, urticaria, and itching? They’re right there on the warning label. Liver failure is there too – that’s what “hepatic failure” means. “Convulsions, increased intracranial pressure (including pseudotumor cerebri), and toxic psychosis have been reported in patients receiving fluoroquinolones, including ciprofloxacin.” Serious central nervous system effects like, “dizziness, confusion, tremors, hallucinations, depression, and, rarely, psychotic reactions have progressed to suicidal ideations/thoughts and self-injurious behavior such as attempted or completed suicide” are also listed on the warning labels. Permanent peripheral neuropathy is listed too. So are musculoskeletal disorders—though the warning label only notes that those happen in pediatric patients—kids. Prolongation of the QT interval, renal impairment, phototoxicity and diarrhea are also listed.

Do the warning labels leave some symptoms of fluoroquinolone toxicity out? Sure. Even the FDA acknowledges that, “While most of the individual AEs (adverse effects) that exist within FQAD (fluoroquinolone associated disability) are currently described in fluoroquinolone labeling, the particular constellation of symptoms across organ systems is not.” The warning labels are a good place to start though.

If someone takes a drug, then develops side-effects that are listed on the drug warning label, it’s pretty reasonable to think that what they’re experiencing is an effect of the drug. It’s not only reasonable, it’s probable.

If thousands of people experience similar adverse effects after taking a drug, those adverse effects are likely caused by the drug.

Thousands of anecdotes certainly help to build a case, but they are still anecdotes, so scientific experimentation is needed to show that a drug is as damaging and dangerous as people claim it to be.

There are more than 200 peer-reviewed journal articles about fluoroquinolones in the Research section of the Links & Resources page on this site. There is PLENTY of evidence that fluoroquinolones do a massive amount of damage to the human body.

There is PLENTY of evidence that fluoroquinolones damage mitochondria, increase ROS, deplete antioxidants, deplete iron, deplete magnesium, damage the microbiome, downgrade GABA, are endocrine disrupters, cause lysosomal disorders, form poisonous metabolites in the liver, activate mast cells and release histamine, AND MORE.

Can any one of those things cause a multi-symptom illness? Yes, of course they can. And fluoroquinolones DO cause multi-symptom, often chronic, illness.

Despite all that, there is not a diagnostic code for fluoroquinolone toxicity, and fluoroquinolone toxicity is not taught in medical school. Many doctors do not recognize fluoroquinolone toxicity when they have a patient who is dealing with it. (Though that is changing—more and more doctors are recognizing fluoroquinolone toxicity, and that is a very good thing.) And, despite all the damage that fluoroquinolones do to cells, there is no test that shows fluoroquinolone toxicity.

A diagnostic code and a test will likely be required for some people to believe that fluoroquinolone toxicity is real. We should fight for those things, because they’re important in getting the problem recognized and the solution sought.

Even without the diagnostic code or adequate test, fluoroquinolone toxicity IS REAL. It is acknowledged in FDA documents and backed up by hundreds of peer-reviewed articles. If someone chooses to ignore that evidence, well, they’re operating on faith in their notions of infallible doctors, not the real, scientific evidence that shows the damage that fluoroquinolones do to cells.

Regardless of what anyone thinks, your pain and your experience are real. I know that it hurts when people assert that your pain isn’t real, or that you’re imagining what you know to be true. It sucks, to say the least. But you know your body, and you know what happened to you. Your truth, and your experience, matter. Other people’s beliefs about your condition don’t.

 

 

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FQ Toxicity Awareness Wall of Fame

 

Some very influential medical professionals (doctors, scientists, pharmacists) have been speaking out about fluoroquinolone toxicity.  This post is to thank them and let them know that they are greatly appreciated!

Dr. Charles Bennett, M.D., Ph.D., M.P.P.

Dr. Bennett has filed two petitions with the FDA to get them to change the warning labels for fluoroquinolones.  One of the petitions is to get the FDA to add Psychiatric Adverse Events to the Levaquin/levofloxacin warning labelThe other is to have the FDA add “Possible Mitochondrial Toxicity” to the Levaquin Label.  The petitions have increased the credibility of “floxies” and have been featured in many of the news stories about fluoroquinolones.  If the FDA responds to the petitions by changing the warning labels for fluoroquinolones, it will be a huge “win” for those who have been hurt by fluoroquinolones.

Dr. Bennett has spoken out about the dangers of fluoroquinolones on many of the recent news stories about fluoroquinolone toxicity.  Here is one news story that Dr. Bennett was interviewed for:

Many others can be found on https://floxiehope.com/fluoroquinolones-links-resources/

THANK YOU DR. BENNETT!

Dr. David Perlmutter, M.D.

Dr. Perlmutter spoke out about the dangerous effects of fluoroquinolones in the NBC 2 Fort Myers, Florida report, “NBC2 Investigators: Thousands call for stronger antibiotic warning.”  Dr. Perlmutter noted in his interview that fluoroquinolones are drastically overprescribed, and, “I’d say there’s very little doubt it was directly related to taking those medications” when asked about his patient Jamie Laura’s debilitating symptoms.

Additionally, Dr. Perlmutter made this video about fluoroquinolones and peripheral neuropathy:

Dr. Perlmutter has more than 325,000 facebook “likes.”  He is a very influential neurologist who has been featured on The Dr. Oz Show, Dr. Mercola’s web site (and books), and other highly visible places.  He is the author of Grain Brain: The Surprising Truth about Wheat, Carbs, and Sugar–Your Brain’s Silent Killers and Brain Maker: The Power of Gut Microbes to Heal and Protect Your Brain–for Life.  For someone of Dr. Perlmutter’s status to be acknowledging fluoroquinolone toxicity is HUGE!

THANK YOU DR. PERLMUTTER!

Dr. Jay S. Cohen, M.D.

Dr. Cohen has been tirelessly studying fluoroquinolone toxicity, and writing articles about the myriad of adverse effects of fluoroquinolones, for more than a decade.  He is the author of the following articles:

Dr. Cohen recently said, “In my 40+ years in pharmacovigilance, FQs (fluoroquinolones) surpass Vioxx and Thalidomide in the degree of permanent harm done.”  If that’s not screaming from the rooftops, I don’t know what is.

THANK YOU DR. COHEN!

Dr. David L. Katz, MD, MPH, FACPM, FACP

Dr. Katz is a specialist in Internal Medicine and Preventive Medicine/Public Health, and the author of a textbook on evidence-based clinical decisions.  He noted in his Huffington Post article, “Your Doctor’s Knee-Jerk Reflex: How Not to Get Kicked” that:

“I recently saw and began treating a patient for the fluoroquinolone syndrome. Within just a couple of weeks, I heard from a friend who had classic symptoms of it as well, following treatment with Levaquin. In both cases, there was a valid indication for antibiotic use. But there was also good reason to doubt the need for such a high-powered, broad-spectrum antibiotic in both cases. Often, the easiest way for a busy clinician to be sure to “cover the bases” with an antibiotic is to go after a fly with an elephant gun. The collateral damage can, predictably, be considerable; a consequence of knee-jerk prescribing.”

That is very nice acknowledgement of fluoroquinolone syndrome and noting of the over-use of these consequential drugs.

THANK YOU DR. KATZ!

Suzy Cohen, RPh

According to her bio on Amazon, “Suzy Cohen, America’s Pharmacist is the author of 8 books. She is the co-host of a free worldwide event which you can watch from home called The Thyroid Summit.com.  Suzy has been a licensed pharmacist for more than 24 years, and she is a Functional Medicine practitioner. In addition to writing a syndicated health column, Dear Pharmacist, for the last 16 years, which circulates to millions of readers each week, Suzy hosts a medical minute on Know the Cause television. She has a Huffington Post blog. You may have seen her on the The Dr. Oz Show, The View, The Doctors, The 700 Club and Good Morning America Health. She has appeared in hundreds of magazines and television shows nationwide. Her books are translated into various languages. Memberships include: The American College for Advancement in Medicine, The Institute of Functional Medicine, The American Academy of Anti-Aging Medicine American Pharmacist’s Association, International Lyme and Associated Diseases Society.”

In her November, 2014 post, “I’m Going to Ruffle Feathers but I’ll Tell You Anyway” she noted:

“A few popular antibiotics affect DNA similar to some chemotherapy agents. If you’re sensitive to them, you could pay a neurological price that causes sudden and serious neuropathy and degrees of brain damage. The drugs that the FDA is concerned about belong to the fluoroquinolone class, and already have a black box warning for increasing the risk of tendon ruptures. But I’m telling you that more reports have come in with accusations of neurological damage. Personally, I would only use these for life-threatening infections that were unresponsive to older regular antibiotics. I wouldn’t take them if I had a regular old urinary tract or sinus infection.”

It is awesome that someone as influential as Suzy Cohen acknowledges the dangerous effects of fluoroquinolones!

THANK YOU SUZY COHEN!

Dr. Beatrice Alexandra Golomb, MD, PhD

Dr. Golomb’s C.V./resume lists her many accomplishments – http://www.fqstudy.info/Fluoroquinolone_Effects_Study/About_Dr._Golomb.html

Dr. Golomb is conducting the Fluoroquinolone Effects Study through the UC San Diego School of Medicine.

A description of Dr. Golomb’s involvement with the “floxie” community can be found on www.myquinstory.info, “Fluoroquinolone Academic Research Update – Dr. Beatrice Golomb UCSD.

Dr. Golomb’s work brings an enormous amount of credibility to those who are floxed.

THANK YOU DR. GOLOMB!

Dr. Joseph Mercola, M.D.

Dr. Joseph Mercola  is a “family physician and founder of www.mercola.com with more than thirty million monthly views that help people find safe and inexpensive nutritional, lifestyle and exercise options to dangerous drugs and surgeries.” (per his bio on Amazon).  He has over ONE MILLION facebook “likes” and is highly influential.

The following articles about FQ toxicity were published on www.mercola.com:

Dr. Mercola has been instrumental in getting the word out about the dangers of fluoroquinolones.

THANK YOU DR. MERCOLA!

The medical professionals mentioned above are very influential (and even famous).  There are many other physicians who are speaking out about the dangers of fluoroquinolones, but who don’t quite have the reach that fame gives those mentioned above.  Their voices are important too though, and I encourage everyone to click on the following document that describes fluoroquinolone toxicity in the words of the doctors affected by it:

http://fluoroquinolonethyroid.com/wp-content/uploads/2014/11/FQ-Adverse-Effects-In-Their-Own-Words-from-Physicians.pdf

There are many other doctors (and other medical professionals) who have spoken out about the dangers of fluoroquinolones and I, as well as others in the “floxie” community, appreciate each and every one of them!  There is no way I could possibly include them all in this post and I will likely do a follow-up post featuring others who are speaking out about the dangerous effects of fluoroquinolones.  For now, a huge THANK YOU goes out to Dr. Bennett, Dr. Perlmutter, Dr. Cohen, Dr. Katz, Dr. Golomb, Dr. Mercola and Suzy Cohen.  You are all appreciated!

A list of doctors who have been favorably reviewed by fellow floxies can be found HERE.

We’re getting to the tipping point of awareness about fluoroquinolone toxicity.  Soon, it will only be the willfully ignorant doctors who don’t read warning labels or research articles, who don’t watch the news (story 1, story 2, story 3, story 4), and who don’t listen to their peers or their patients, that claim that fluoroquinolones are “safe and effective” drugs.  They may be effective, but they’re far from safe.  The doctors listed above know it, patients know it, all physicians should know it.

 

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Acknowledgment is Healing

We all want our life to matter—to have a purpose. We all want to be valued. We all want to be seen and acknowledged. We all want to be believed. We all want our ideas to matter. We want to be listened to and heard. We all want to be respected. We all want reassurance that we matter, that we are okay and, most of all, that we are loved—unconditionally.

All of these are human desires. Everyone wants these things.

Some people are particularly good at getting these things. They are famous. They are artists—even the ones that don’t call themselves artists.

Even people who aren’t influential to thousands of other people want to be seen, acknowledged and unconditionally loved though. It’s part of being human.

People with mysterious, invisible, poorly-understood diseases often struggle with being seen and acknowledged. They are told that their disease isn’t real. They are told that they should feel fine. They are told that they are lazy or unwilling to help themselves. They are told that doctors know more about their body than they do. They are told that they are choosing to be sick. They are told that their illness is all in their head. They are told that if they only tried ___ (a new drug, diet, exercise, belief, etc.) they would be okay, and if they’re not okay after trying those things, they must not be trying hard enough.

It is mean, and cruel, to steal acknowledgement and validation from someone. It is particularly cruel to say horrible, hurtful, unacknowledging things to someone who is sick.

Who is anyone else, even a doctor, to say that your pain isn’t real? That your suffering isn’t warranted? That, because no one knows what to do to fix you, you aren’t worth fixing? That your problems and struggles are made-up choices, as opposed to “legitimate” physical health problems?

The person who is living in their body every day is more of an expert on their pain, suffering, and their disease, than ANYONE else, no matter how much schooling that person has had.

Doctors can offer insight, advice, diagnostic tools and diagnoses; they can fix many health problems, and if they’re really good a their job, they can heal people. But it really, really, really pisses me off when doctors make people who are sick and scared feel small and unworthy by not acknowledging their pain or illness.

It makes people feel small and unloved when they hear a trusted authority figure (or anyone else) says that their symptoms are imagined, or that their disease doesn’t exist.

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Doctors aren’t the only people who fail to acknowledge the pain and suffering that is involved in mysterious, invisible illnesses. (Doctors are actually better, on average, about acknowledging pain and suffering than most people. It just happens to be more painful and damaging when they don’t acknowledge mysterious diseases because if they can’t even acknowledge the disease, then they can’t fix it, and if they can’t fix it, what is the sick person supposed to do??) There are a lot of people who seem to think that they’re experts on whether or not fibromyalgia, CFS/ME, fluoroquinolone toxicity, chemical sensitivities, mycotoxin/mold illness, vaccine injuries, chronic Lyme Disease, ADHD, benzodiazepine withdrawal, depression, anxiety, Morgellon’s, mitochondrial dysfunction, and other multi-symptom, mysterious, invisible, illnesses exist.

To anyone who would be so callous as to say to someone who is suffering that their disease doesn’t exist – Who are you to say, or even think, that? Who died and made you the expert on anyone else’s body? Who are you to say that you know ENOUGH about the intricacies of another person’s body to determine that YOU know what is going wrong with it?

It is ass-hole-ish and cruel dismiss people—to make them feel diminished and small. Don’t do that. It is the opposite of unconditional love. Acknowledge pain, suffering and mysterious illnesses. Acknowledge those who are going through enough crap without your judgement. It’s the right thing to do. Failing to do so makes you a jerk. Don’t be a jerk.

 

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Acknowledgement of Fluoroquinolone Antibiotic Toxicity

It is important to get acknowledgement from the doctors you are working with.

Though fluoroquinolone toxicity is not near as acknowledged as it should be, it’s not completely unheard of.  After all, most of the symptoms that people experience are listed on the warning labels.  Fluoroquinolone toxicity has also gotten some attention over the years, from Stephen Fried’s 1998 book, “Bitter Pills: Inside the Hazardous World of Legal Drugs,” to Nancy Edwards’ documentary, “Certain Adverse Events,” to the PBS Frontline special, “Certain Antibiotics Spur Widening Reports of Severe Side Effects,” to the dozen+ news stories about fluoroquinolone dangers done in the last month (linked to here).  Hundreds of media, blog, and peer-reviewed journal articles have also been written about the deleterious effects of fluoroquinolones (linked to here).

So, when a healthcare worker says, “I’ve never heard of reactions like that,” it makes me wonder, are they ignoring the warning labels, not paying attention to the media, or both?  (Yes, I know that my perspective is a bit biased and not everyone sees FQ toxicity everywhere, but it has been getting some genuine mainstream attention lately, and any doctor who prescribes these drugs should at least have his/her interest piqued by the stories and/or the existing journal articles.)

I suggest to everyone that they find doctors (or other health-care personnel) who, at the very least, acknowledge that fluoroquinolone toxicity is possible.  You can find a list of positively reviewed doctors here.

Fighting with your doctor for anything, much less a baseline of acknowledgement, is counterproductive to healing.  You don’t want to have that tension with the person who is supposed to be helping you.

Many Floxies have reported the relief they have felt when gaining acknowledgement of fluoroquinolone toxicity from a doctor.  In Diego’s Story, he noted that, “My doctors validating that LEVAQUIN did this to me” was one of the things that has helped him to heal.

Mike, a frequent commenter on this site, told me how great it was to hear from a doctor, “you are definitely floxed.”  And I appreciated hearing from him that his doctors told him that they read Floxie Hope.  🙂

Josh sent me this message:

“So, as I was telling you before, I had to schedule a root canal and was nervous about the procedure. When I went in to the dentists office, I filled everything out about my allergies to fluroquinolones and that I was under no circumstances to be exposed to them. Then, the doctor comes in and first thing she says is…

‘So I see you’re allergic to that poison that I would never dream of prescribing anyway.’

Can you imagine my relief? For about 5 minutes we talked about the adverse effects of quinolones and she assured me she would have never used them in the first place. As for the procedure itself, the first phase went very well (I have to get it finished in two weeks). I was given a lot of novacaine and she used eugenol (clove oil) to pack and seal the cavity temporarily and to bring down the swelling from a small infection in my tooth. I did experience a small flare (some mild muscle ache, nothing serious) for about 36-48 hours after the procedure. But 2 week out from the first phase, and 2 weeks until the second, my floxie symptoms are fine.

Please feel free to share the good news with the community that there ARE more and more medical professionals seeing things from the right perspective here! This woman is a very well respected endodontist in the Philadelphia area and she was just as adamant as I was about staying away from these drugs. Definitely encouraging news, and I felt like God really sent me her way to calm my nerves about the procedure and show that there are some doctors who know what’s up.”

It is noted regularly in The Fluoroquinolone Toxicity Group, a facebook support group for Floxies, that a doctor or other medical professional has acknowledged fluoroquinolone toxicity.  (Frustration with doctors not acknowledging fluoroquinolone toxicity is also noted often, and I suggest that everyone who experiences that try to find a new, more empathetic and educated doctor, if possible.)

Life is too short and precious to fight for the baseline of acknowledgement.

There is a lot of information about fluoroquinolone toxicity available.  Curiosity isn’t too much to ask for either.

The words, “I believe you,” are healing.  I hope that you all get that.  It’s more healing than any medication I can think of.

I’m really glad that more and more doctors are acknowledging fluoroquinolone toxicity, and how dangerous and destructive fluoroquinolones are.  To every doctor who acknowledges the pain and suffering of their patients going through fluoroquinolone toxicity, and especially to those doctors who don’t prescribe these drugs because of the devastation they bring – THANK YOU!

Acknowledgement, curiosity, knowledge, and caring will bring change.  When doctors bring those traits to their practice, they can change the lives of all of their patients.  The more doctors who see and acknowledge fluoroquinolone toxicity, and care about the patients who are suffering from it, the more quickly change will happen and the better the world will be.

 

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