Tag Archives: doctors

Reluctantly Going to the Doctor

After getting floxed I developed a significant amount of skepticism toward Western Medicine. I realized the damage that Western Medicine, especially pharmaceuticals, can do, and I stopped believing that doctors can fix many issues. I learned that Western Medicine is really lousy at dealing with multi-symptom chronic illnesses of all types–including the ones that are recognized (like autoimmune diseases)–but especially the ones that are not recognized (like fluoroquinolone toxicity) or ill-defined (like ME/CFS, fibromyalgia, etc.). I saw that there is very little that can be done to help people who have suffered from iatrogenic illness, and that often (though not always, of course) when Western Medicine doctors encounter a patient who has been hurt by a pharmaceutical or medical procedure their response is hostile or ignorant.

With that knowledge, I proceeded to tell myself that I was better off without Western Medicine. Despite my insurer’s pleas, I refused to sign up with a primary care physician (out of laziness and inertia as much as fear and adversity) and I told myself that I was healthier and happier without getting poked, prodded, and possibly poisoned by doctors. For the most part, my avoidance of the Western Medical system has been serving me fine. I have been healthy and happy for many years.

However, I recently had an issue that needed to be fixed by a Western Medicine doctor – or, at least the tools of a Western Medicine doctor. I needed a minor surgery. A scalpel and Novocain were necessary to fix my issue (an issue that is somewhat embarrassing, has nothing to do with fluoroquinolone toxicity, and that no one wants to envision, so I’m going to do my best to get through this post without saying exactly what it was). No diet changes would cure me, nor could acupuncture, nor could exercises, or anything else other than a scalpel (the Novocain wasn’t strictly necessary, but it sure made getting cut easier for everyone involved). So, I went to a surgery center, got my minor surgery, and am on my way to being healed. The doctor who fixed my issue was good. He was kind, thoughtful, and he did what he needed to do to fix my issue in as quick and painless a way as possible. I am grateful to him for what he did, and I’m glad that the technology to quickly and easily fix my issue was available.

Western Medicine is really good at fixing well-defined problems that involve scalpels and other cutting tools. Western Medicine put me back together.

About a week after I got my issue fixed, my mom fell and broke her hip. She needed a partial hip replacement and she got one. It’s still a recent development, and it’s TBD how well she was put back together, but, my point is that Western Medicine doctors are good at dealing with broken bones (and pus pockets). They also have good tools for numbing people and knocking them out. The painkillers that they have are also quite effective (though not without consequence). I’m hopeful, actually fairly confident, that the doctors did a good job putting my mom back together, and that she’ll recover well.

I wish that Western Medicine was as good with multi-symptom, multi-system, complex illnesses as it is with broken bones, pus pockets, and other issues that can be fixed with surgery. I wish that fixing gut microbiome dysbiosis was as common and easy as fixing a broken bone. I wish that hormonal imbalances were as easy to detect and cure as an abscess. I wish that adverse drug reactions were easy to detect, and that the promise in all the commercials of “see your doctor if xyz occurs” resulted in a doctor who knew how to treat and cure adverse drug reactions. But Western Medicine isn’t good with multi-symptom, multi-system, chronic illnesses – it just isn’t.

But they are good with broken bones and surgeries, and I am very, very, very thankful that I got my issue taken care of, and that my mom got a surgery to put her hip back together.

Western Medicine has its place. And as much as I’d like to avoid doctors, I’m going to go to them when necessary. I’m guessing that you will too. I really wish that they were better at treating fluoroquinolone toxicity and other similar issues – or even better at treating the symptoms of fluoroquinolone toxicity. Maybe someday.

*****

 

Floxed Friday – The Rise of Floxie Education

Every Friday Michelle Polacinski, a Floxie as well as the Director and Producer of ‘Floxed,’ sends out a newsletter to those who have subscribed to the ‘Floxed’ newsletter. The Floxed Friday updates are always interesting and thoughtful, and Michelle has given me permission to share them here. 
 
If you would like to receive the Floxed Friday updates directly from Michelle, please subscribe to the Floxed Documentary email list. You can subscribe through THIS LINK. Subscribing also helps Michelle to gain funding for the Floxed Documentary, and she doesn’t send out spam. 
 
The following was written by Michelle: 

We’re in Los Angeles, home of the entertainment industry, the most prevalent researcher on Fluoroquinolone Toxicity, nostalgia, and the doctor that floxed me. Ahhh it’s good to be home… and it’s weird to be home.

We’re shooting two very important interview subjects out here and we are very excited about what’s to come. During every interview, we learn something new that we didn’t know before. Did you know that on certain tests that doctors have to take in med school, “Cipro” is the answer to “What do you prescribe for a UTI?”

That was the case back then, but it’s not the case now.

Before diving headfirst into the entertainment industry, I was on track for medical school. I attended a pre-med summer camp for interested high school students in Boston, where I wore pant suits and attended conferences with a coffee in my hand as if I were a full-blown adult.

In college, I took classes on Animal Behavior and Microbiology, auditing Immunology by accident, and making friends along the way.

A lot of these friends, but not all, ended up making it to medical school. I was eternally grateful when they flooded me with facebook messages, skype calls, emails, and texts asking me the details about what happened to me. They were both alarmed and very curious.

Early into med school, they didn’t know much about what to expect, but a few years later, those same people reached out to me again, “just to let me know” that they had just taken an entire lesson on Fluoroquinolone Toxicity Syndrome and that they were told only to prescribe fluoroquinolones in near-death situations.

Naturally, my former academic peers shared my floxed story with their classmates and later, I had messages from other friends in nursing school who learned about FQT/FQAD.

At Chowder Fest this year, a woman made a sly remark about my “intelligence” when I propped the door to the bathroom open with a garbage can and we ended up talking about Fluoroquinolone Toxicity Syndrome just for a girl who was peeing to raise her arm over the stall and scream, “Is that CIPRO?” She learned about it in a Biology class studying for her Bachelor’s Degree.

I know it’s hard to have hope if you’ve been floxed, particularly if you’ve shown no signs of improvement, but there is hope in education. There’s hope in the future.

We hope that once finished, we can use this documentary as an educational resource for doctors and other medical professionals alike. Just talking about it seems to spark awareness and hopefully, change.

Have a great weekend!

Best,
Michelle Polacinski
Floxie, Director, and Producer of ‘Floxed’

*****

Floxed Friday – Oculomucocutaneous Syndrome

Every Friday Michelle Polacinski, a Floxie as well as the Director and Producer of ‘Floxed,’ sends out a newsletter to those who have subscribed to the ‘Floxed’ newsletter. The Floxed Friday updates are always interesting and thoughtful, and Michelle has given me permission to share them here. 
If you would like to receive the Floxed Friday updates directly from Michelle, please subscribe to the Floxed Documentary email list. You can subscribe through THIS LINK. Subscribing also helps Michelle to gain funding for the Floxed Documentary, and she doesn’t send out spam. 
The following was written by Michelle: 
_____________________________________

Oculomucocutaneous Syndrome

I was transferring footage from one drive to another and scrolling through Instagram when I realized that I could use my time in much better ways, so I picked up Ben Goldacre’s ‘Bad Pharma.’

I’ve been reading this book on-and-off since I started making ‘Floxed’ at another floxie’s recommendation. Dr. Ben Goldacre has produced Ted Talksand traveled around the world explaining to the public how and why large pharmaceutical companies can trick doctors with marketing tactics, but also how doctors can mess up… and how that’s normal… and sometimes, yeah, sometimes it’s deadly. Whoops.

Dr. Goldacre started this journey after he misprescribed drugs to one of his patients and hurt his patient even though he followed the information he received about that drug to a tee. How could he, upon following all the Good Doctor rules, hurt his patient?

This topic is long, confusing, and it’s understandably arduous to research and understand it all. Goldacre has written multiple books on what he has learned in his research and I’ve only gotten through the first part of ‘Bad Pharma,’ which is 100 pages long and currently chock full of highlights, underlines, and various annotations.

This particular thing caught my eye just now: Oculomucocuaneous Syndrome. This particular syndrome isn’t just an illness that comes on randomly nor is it a virus or some kind of disease. No, it’s actually what Goldacre describes as a “horrific” multi-system side effect of the drug ‘practolol.’

Practolol was a beta-blocker drug used for heart problems that had a side effect in humans which didn’t occur for the animals they tested on first, which apparently occurs very rarely. So, what is Oculomucocuaneous Syndrome? He left it at “horrific,” so I had to find out.

No, it’s nothing like Fluoroquinolone Toxicity Syndrome other than the multi-system syndrome inducing part. It consists of keratocunjunctivitis sicca, which is dry eye syndrome. The Wikipedia article showed a picture of someone with blue sclera, but it’s actually just a dye they used, so it seemed more horrifying than it actually is. It also consists of various scarring and something called metaplasia, which is the transformation of one type of cell into another type of cell (WOW what), and the shrinking of a different part of the eye.

According to this PubMed article about the syndrome, 3 patients had significant vision lost and many also lost their ability to produce tears. So that is definitely horrifying, but Fluoroquinolone Toxicity Syndrome is just as if not more horrifying, so why wasn’t it immediately pulled off the market like Practolol?

If you’re interested in how scientific studies and drugs work, I highly recommend grabbing a Ben Goldacre book from your local library. These books are very dense, but they’re an interesting read.

Have a great weekend!

Best,

Michelle Polacinski
Floxie, Director, and Producer of ‘Floxed’

*****

Change Will Come

Ruth wrote this guest post. You can read Ruth’s story of fluoroquinolone toxicity in “Ruth’s Story – Cipro Toxicity.” You can also listen to Ruth’s story through her episode of The Floxie Hope Podcast. THANK YOU, for sharing your insight and wisdom, Ruth! 

There was a long period of time after I got floxed that I despaired of anything ever changing in the medical field. I didn’t think doctors would ever change their prescribing habits regarding fluoroquinolones and people would continue to be harmed as I was, until the end of time, basically. But I recently had an epiphany that brought the realization that not only will the overuse of fluoroquinolones stop, it is inevitable that it does stop.

It is true that America’s FDA is doing a poor job of keeping the public safe from bad drugs and faulty medical devices. But I believe that even if the FDA does not become the watchdog it should be, the needed changes regarding fluoroquinolones will come. Probably not as soon as any of us would like, but they will come.

Every summer I work as a pyro technician for a display fireworks company. I have to undergo training for this. I am kept abreast of the requirements of the ATF, our own industry, and our company. Our own company is stricter than the legal requirements as regards safe distances for spectators. Our own industry has made recommendations to improve safety which are also stricter than what the ATF requires. Sometimes these requirements can seem burdensome or inconvenient.

Why would a fireworks company and professional organizations made up of pyro technicians create their own stricter regulations, when it would be easier to just stick with whatever is legally required? Because sane and rational people want to keep the public safe. Yes, we want to put on a good show, make some money and no one in this world actually wants to have to work harder– but at the end of the day no sane and rational person would want to be responsible for injuring another human being.

I believe the doctors themselves and others working in the medical industry will in the end solve this problem, whether or not the FDA ever wakes up and provides some regulations for use of fluoroquinolones that have some teeth. I believe even the drug companies will reluctantly come around due to social pressure or fear of litigation. I believe this because if it happened in one industry it can happen in another.

New and stricter regulations regarding the transport, handling and use of display fireworks have been met with resistance. I don’t want to paint a picture that says every time a new rule is added everybody is happy about it and immediately gets on board with it. But I have heard the arguments for continuing the old ways and I know why they aren’t holding up, why changes are happening despite opposition. The arguments against changing how fireworks shows are done are the same ones that are used against changing how fluoroquinolones are prescribed. They are all flimsy arguments. Here’s my list:

  1. We’ve always done it this way.
  2. It’s easier to do it this way.
  3. It’s cheaper to do it this way.
  4. I don’t believe this really makes a difference for safety, because I personally have never seen anyone get hurt doing it this way.

Let’s take these one at a time:

We’ve always done it this way” simply does not hold up when the science says what you have been doing is not safe. In both industries those advocating for safety have science on their side. Also, it is mainly the older pyros and older doctors using this argument. As they retire, and young people coming in are trained in a different way, this argument will simply disappear. I have had young pyro technicians come to me and say that an older person on the crew showed them how to do something that was inconsistent with training they received. I confirm that they have to do it the way they were trained and I never get an argument from them.

The more experienced person may continue to argue on the basis of, “I have always done it this way,” but the younger person will distrust anything that goes against the training he or she received. I have heard of some medical schools today teaching about fluoroquinolone toxicity syndrome and cautioning students to avoid using FQ’s unless really necessary. These are second and third hand accounts, but if they are true this is a huge win for us.

Some of the older pyro technicians, sad to say, take themselves out of the picture by choosing to continue doing things that we know today are not safe. Doctors who simply refuse to believe in the dangers of fluoroquinolones and take those drugs themselves also may learn the hard way. I’m not saying people getting hurt should be celebrated, absolutely not, but every time the lesson is learned the hard way it is still learned.

It’s easier to do it this way,” does not fly either in the face of how much people can be harmed. In one case we are talking about explosives that, if they don’t go off in the sky where they are supposed to become actual bombs on the ground, and in the other case we are talking about medications whose side effects have been described many times as being like a bomb going off in the person’s body. The amount of voices speaking out on the horrors of fluoroquinolone toxicity helps our case because after people have read our stories they don’t want to risk FQ toxicity no matter how much the doctor may claim Cipro has a great record of safety and efficacy.

The informed patient is going to request that the doctor culture the infection and prescribe accordingly, rather than just prescribe the broad spectrum antibiotic because it is easier. Patients are refusing to take the atomic bomb of antibiotics when they might not need an antibiotic at all. Being handed Cipro and sent on your way without even knowing for sure you have an infection is not going to continue to be accepted medical care. Those of us who speak out to our friends and post about this here at floxiehope and on social media are part of that change, and we can feel good about that. The dangers are becoming known.

Customers can and do drive changes that improve safety. For a recent fireworks show we were informed that the sponsor had requested we follow recommendations by our own industry for distance between loaded mortars. They were actually asking that we follow California’s standards, even though the show was shot in Wisconsin. What reason could we give for not doing what the customer asked? It’s easier to be able to load all the mortars right next to each other in the old style racks than to skip tubes or use the newer ones that have the required spacing? That would have been our only reason to refuse that request: It’s easier to do it the old way.

But the sponsor was making the request because he wanted as safe a show as possible. When patients make requests of their doctors because they want to be as safe as possible the doctor cannot really make any argument that is going to hold up as to why he should not honor those requests. Today we are seeing customers of display fireworks companies taking the time to inform themselves about our industry and what we do! How much more so are patients today taking the time to become informed? In both cases it is happening because the Internet makes information about any subject easily available. When we speak out about our reactions to fluoroquinolones we are helping provide valuable information for others.

It’s cheaper to do it this way,” may seem to be a logical reason to resist changes. After all, companies need to watch their bottom line. But when it comes to a question of money or public safety, the need for public safety will eventually win. There may be a period of time during which companies can make some money while risking the health and safety of other human beings, but eventually that time will end.

People have a desire for self preservation. Whether it is pyro technicians experiencing danger from low breaks, round trippers and finale racks blowing up or patients experiencing or reading about bad ADR’s to a drug, people are going to run the other way when their life or health could be put in danger. Fireworks companies that buy cheap but unreliable product lose workers and have difficulty selling more shows without crews to put them up. Hospitals that use fluoroquinolones for every little thing lose informed patients. If I needed surgery I know where I would go for it, because I know of hospitals (a couple) that do not use fluoroquinolones. If I had to pay out of my own pocket I would do it, because my health and safety is that important to me.

I know of display fireworks companies that are now out of business after consistently focusing on the bottom line instead of safety. I believe the same will hold true for medical facilities, doctors and even drug companies that continue to put money ahead of human health and safety. The display fireworks company I now work for tests all their product and they spend extra money to get product that is going to perform as it is supposed to. They are rewarded for this not only with greater customer satisfaction for some really beautiful shows, but they attract more workers. Pyro technicians would rather work where they feel safe and know they are not putting members of the public at unnecessary risk.

I think the same holds true in health care. I used to work for a medical staffing company in physical therapy. Some companies I temped for definitely cared only about the bottom line, with very high productivity standards. I was so rushed that I knew I was not really able to provide good care, and that put patients and myself at risk. I stopped taking jobs for those companies. Companies that had compassion for both their patients and employees attracted the best workers and could even pick and choose, selecting the cream of the crop of therapists, doctors and nurses. Patient satisfaction went up. While some of the companies that had pushed so hard for productivity were being bought out, the companies that I most preferred to work for were thriving. Decisions made with concern only for the bottom line always come back to bite the companies making them right in the butt.

I don’t believe this really makes a difference for safety, because I personally have never seen anyone get hurt doing it this way,” was the excuse my own doctor used for prescribing Cipro to me for a sinus infection. She had personally never seen anyone have a reaction to Cipro. Well, that is anecdotal evidence and it’s weak. The medical community cannot on one hand say that mountains of anecdotal evidence that fluoroquinolones are harming people is not strong enough evidence and then use anecdotal evidence themselves for their continued widespread use. The changes the FDA recommended for the use of fluoroquinolones in 2016 were made for a reason. A panel of experts heard the testimony of those harmed and looked at medical research regarding fluoroqouinolones and made an informed decision. Making a decision based only on your own experience and observations is not an informed decision.

I say that change will happen in the medical field because in the pyrotechnic industry change is happening. When a change is recommended in how something is done it is probably because somebody got killed doing it the old way. People who want to be safe believe those recommendations even if they personally never witnessed an accident. The same will happen with doctors. Even if they never personally had a patient get floxed, they will follow FDA prescribing guidelines for FQ’s because they do not want to harm other human beings.

One thing that does stand in the way of this change is cognitive dissonance created by the very fact that no sane and rational person wants to harm another human being. As the evidence comes out that fluoroquinolones are insanely dangerous and that the side effects are horrific, long lasting and sometimes permanent, doctors do not want to believe that they put anyone through that. The fact that reactions are delayed means they most certainly could have severely harmed a patient and never known about it because the connection to the antibiotic was never made. It is going to be very hard for doctors to come to terms with this, and I think it is behind a lot of their strident claims that Cipro is “safe and effective.” They need it to be, because if it were not, then there is a good chance they have harmed those they meant to help.

A floxed friend recently shared her experience with an ER doc who tried to give her Cipro for a UTI without even culturing to confirm an infection. She gave him an earful and the expression on his face said that she got through to him. He was horrified. He will either now disbelieve her because he must to avoid a truth he cannot face (that he may have harmed patients) or he will do some research, find the truth, change his prescribing habits and speak to his colleagues. I believe that in time even this cognitive dissonance will be overcome and doctors will do what is right, follow the recommendations of the FDA, and stop prescribing fluoroquinolones in situations that do not warrant their use.

The fluoroquinolone catastrophe has gone on far too long. It can be discouraging to reflect on how many have been needlessly harmed. However, as I have observed changes happening in the pyrotechnic industry that, although sometimes opposed, do happen and do increase public safety, I have to believe that the medical industry is not immune to those same types of changes. I think if it were easier to sue for harm done by pharmaceuticals, that would actually be a good thing, because sadly, there are some people out there who are neither sane nor rational, but consumed with greed. Only one thing gets their attention, and that is losing money. There has to be more accountability for drug companies and doctors who prescribe dangerous drugs needlessly. I do believe it will happen and in the meantime, as we inform people about the dangers of fluoroquinolones we are playing our part in bringing about these much needed changes to the medical industry.

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.

fluoroquinolone-lawsuit-banner-trulaw

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.

 

flu tox get help you need banner click lisa

 

 

Comments From Doctors About Fluoroquinolone Toxicity

With every article about fluoroquinolone toxicity that is published (there are hundreds HERE), more and more people come forward and say, “that happened to me too,” or, “those drugs hurt my family member,” or some variation/elaboration of those sentiments. As awareness grows, more and more doctors are coming forward to say that fluoroquinolones are dangerous drugs whose risks are under-recognized. Growing awareness and recognition, especially from doctors, nurses, and other medical professionals, is important in the fight to reduce the number of lives ruined by these dangerous drugs.

It recently came to my attention that there were many good comments from doctors and other medical professionals on an article in Medscape Medical News, “FDA Panel Says Fluoroquinolones Need Stronger Warnings.” (If the link leads you to a sign-in form instead of the article, just google “FDA Panel Says Fluoroquinolones Need Stronger Warnings” to skip the sign-in-wall.) It should be noted that Medscape Medical News is aimed at medical professionals, and that one needs to work in medicine in order to comment on stories on the site. The comments are, for the most part, a conversation between doctors. It is heartening to see that most of the comments are supportive of the notion that stronger warnings are needed on fluoroquinolones, and that the real risks of Cipro/ciprofloxacin, Levaquin/levofloxacin, Floxin/ofloxacin and Avelox/moxifloxacin are under-recognized and under-appreciated. Several of the commenting doctors also noted that these drugs should only be used as a last-resort, after all other options had been exhausted.

In this post, I’m going to highlight some of the comments that were published on “FDA Panel Says Fluoroquinolones Need Stronger Warnings.” It’s good for “floxies” to hear from doctors who recognize the pain caused by fluoroquinolones, who are also fighting for more prudent and appropriate use of these dangerous drugs. It’s nice to hear from doctors who recognize that fluoroquinolones can cause a multi-symptom chronic illness, and that fluoroquinolone toxicity is not a simple “side-effect.” A huge “THANK YOU” to all the doctors who left supportive comments on the article! Conversations between doctors about the dangers of fluoroquinolones are going to do a lot to change how fluoroquinolones are thought of and prescribed.

Here are just a few of the comments (I ended up copying/pasting most of them, but there are still some gems left behind in the comments section of the article):

“At the age of 39, I suffered horribly from the use of Cipro. It changed my ability to practice Anesthesiology. I had to go to barely part time work when this occurred and could barely move. I had no preexisting health issues prior to the use of this fluoride containing poison in my opinion. I still have evidence of its destruction 6 years later. I have met several other individuals who have also suffered among them a classical pianist, two other physicians and several other highly educated individuals whose lives were changed monumentally especially for the first one to two years post “poisoning” as I call it.

The toxicity of this class of drugs is predominantly musculoskeletal and neurologic and I can truly sympathesize with patients who have been “blown off”as hypochondriacs by their PCP s or others when they present with severe musculoskeletal pain and neuro and neuropsych issues. There are other SE as well in various organ systems however as noted most seems centered in the MS and neuro psych realm. Many have expansive work ups (as did I) to rule out ominous diagnoses all to no avail but suffer greatly nonetheless in terms of years not weeks or months!

Fluoroquinones are cytotoxic to chondrocytes and the vasa vasorum is also thought to be greatly affected at the microscopic level and may lead to the neuropathy. Some feel this propensity in patients to suffer what is called (By victims of these drugs)”FQ syndrome”may point to a mitochondrial source.

Just because there is no blood test to measure the damage these poisons wreak on previously well patients or because the wide range of symptoms patients experience has yet to be acknowledged and named a formal syndrome, doesn’t mean the horrible side effects aren’t real or don’t exist. To do so, is folly. I was finally diagnosed at a well known academic center by a neurologist in conjunction with rheumatologist. Also of interest is the flood of multiple significant musculoskeletal and neurologic complaints suffered by a large proportion of government workers who were given Cipro after the Anthrax scare several years ago. However, again, many people were dismissed then.

One thing is certain is that significant side effects of these medications exists and failure to acknowledge patients who present with what seems to be a “positive review of systems” after FQ use should be taken seriously. Especially true when as a physician you know your patient was previously healthy prior to FQ use and not a patient who routinely presents with multiple mundane complaints.

I feel and have read many patients who experienced nearly identical symptoms to the ones I suffered. Most all blown off as head cases. If more physicians would entertain the possibility a FQ may be responsible for their patients suffering, maybe then they would

Report to the FDA and we would have a true idea as to the incidence of life changing and sometimes permanent havoc these drugs wreak on our patients. In my case, I’ve lived it and I welcome the added safety warnings on these drugs. People have abused these drugs which are extremely broad spectrum and powerful for conditions that don’t require a hammer to kill an ant. Hoping these warnings will ease the indiscriminate use of these very potentially damaging drugs.”

“This does not even mention the risk of acute toxic psychosis. I have witnessed it in a 17 year-old on levofloxacin for h. pylori. Dramatic, acute onset of psychosis after two doses with no prodromal history. There are more cases out there I understand. I have learned to reserve these drugs for cultured bacteria for which there is no other reasonable alternative. It is not a reasonable choice for prophylaxis or starting treatment pending culture results in my opinion.”

“I, myself, have had major issues with this class of drugs.  Took Avelox in July 2013 for an upper respiratory infection without issue.  Was given Avelox again in November of 2013 and within 10 minutes of my first pill, I was in anaphylactic shock.  I was transported to the ER and nearly died!  Over previous years, I was given Levaquin and Cipro for other URI s.  Guess my body had enough.  My joints are shot and I will never be the same again.”

“I agree with need for stronger language even a black box warning and better education of prescribers.”

“I am a nurse, and i never knew about this until i took Levoquin and Cipro. Now i am a disabled person. I lost my life. The side effects are not being reported. Check the study UCSD (University of California, San Diego) is doing. Thanks for reading our notes and joining in.”

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“I am a BSN, RNC-NIC nurse.  I had been given Levoquin and Cipro both at different times.  I am now a “FQAD” person otherwise know as a “Floxie”.

The medication was given appropriately both times as second and third choice for sinusitis and possible bacteria meningitis (it ended up being viral).  I am prone to meningitis and needed to be treated. After two other abx didn’t work, i had to go on a Fluoroquinolone.  My life was saved.  However, it is also ruined.  I was walking up a short flight of stairs, slowly, nothing special, and my Gluteus minimums and my Gluteus medius tore almost completely off my femur.  I was allowed to do nothing and no physical therapy allowed for 7 months.  pain, when not on analgesics was 10/10.  ON FIRE!!  Finally off to the Physical Terrorist and she seemed to somehow cure me.  It is coming back through.

I have concentration difficulties, issues with eyes, i fall asleep sitting up at the dinner table, i cannot remember words, faces, people i know well, EEG shows something as does MRI and have to go through Neurophsych testing, pain head to toe, dx with Fibromyalgia too.  I have never, ever in my life been depressed (unless called for in the case of a loved one dying etc).  I now have depression and am slightly suicidal.  (NEVER EVER that way previously, this is from the Fluoroquinolone.)  I have a chronic fatigue type of issue. I could go on – so many problems.  I have to go have my heart checked now i have issues there  – not sure what.

Please, do a culture.  Insist on a culture.  There may be another drug. I lived, but my life is ruined.  I loved being a nurse.  I cannot even garden now and had to hire a housekeeper.

This is serious!  These Fluoroquinolones are poison.  I don’t really do anything anymore.  i am afraid of running into people who know me and i should know but do not.  That is embarrassing.  I have taken to telling them i am sorry, i have fluoroquinolone toxicity and it has affected my brain.  Will you tell me how i know  you?  Embarrassing as hell, but so far so good, everyone has been nice about it.  When i run into someone who is not, i will probably end up back in my house.

In retrospect, i would rather have risked not taking it and not living.  Yes, it is that bad.

Do not poison your patients.  Tell the docs, they do not know.  Look us up on Facebook by typing in “Fluoroquinolone” in the search bar.  Meet us and see what our lives are like.   One Cipro tablet, one Levoquin can cause this.”

“had reaction to fluoroquinolone but question how many reactions are actually reported to FDA. I know mine wasn’t. Suspect rate of side effects is way higher than reported. also suspect the generic I had releases at a different rate of delivery than the older brand name Levaquin possibly causing reaction as I never had it with brand name in past.”

“After one dose of ciprofloxacin, I developed Achilles tendinitis, first on the right, later on the left. These impaired my mobility for more than one year.”

“Quite a few postal workers presented with today those of us in the “know” call FQ syndrome after prophylaxis for anthrax scare!

There’s a lot out there! Physicians have failed these patients by and large by not reporting these side effects and hence nothing has been done with veracity till now as more and more patients are getting vocal and advocating and demanding answers. The Internet has allowed many suffering to see they are not “crazy” and others are suffering too!”

“Excellent article ,discussing a very important subject.FLUOROQUINOLONES are terrible drugs ! no one can imagine how harmful are they till he suffers one side effect and i refer to the SENSORY NEUROPATHY involing the whole body from face to feet including chest and abdomen.”

“Fluoroquinolones ought to be the absolute last antibiotic of choice in every case. Its’ highly unfavorable safety profile would make me think long and hard before using it.”

“Some doctors still hand these things out like aspirin. I knew they were dangerous, but not this much. This announcement needs very effective publicity – especially to physicians and pharmacists.”

“don’t forget the neurotoxicity ( potential that is ) is not limited to the periphery and that patients with epilepsy should probably be spared the ”quinolone risk” unless options are limited and the treated condition dangerous.”

“FQ’s were brought on the scene with a lot of hype. IMO they have not lived up to the hype that preceded its use. Whatever happened to using Tetracycline for sinusitis, Bactrim for UTI’s. Of course you could go outside the box and use colloidal silver for any and all infections without worry of resistance.”

“I am amazed at how often the quinolones are prescribed when there are safer alternatives. They should not be a first choice!”

“I suffered horribly from Cipro and relate to the fact that MOST physicians have no idea of the wide swath of side effects these drugs are responsible for and unfortunately some of them are so severe they leave the victim with permanent sequelae. So many patients “blown off” by their physicians who either fail or refuse to acknowledge the poison these drugs are. It kills Anthrax.”

“I don’t know why any physician would risk prescribing fluoroquinolones. Tequin almost killed me and I’m not exaggerating. I spent several days close to death in the hospital. Thankfully I’m alive but my hearing and eyesight and blood vessels are permanently damaged and I STILL have other autoimmune, neuropathy and soft tissue issues as well ( since 2003). I spent several days in and out of a ‘ diabetic’ coma and the doctors were no help. No one would listen to me when I told them it was the Tequin that was killing me. Given my sed rate, I was given a Lupus diagnosis. That was the final straw for me and I knew I would die if I didn’t get out of there. When I was coherent long enough to speak to my husband, I told him to unplug me, give me some soda and crackers so that I could gain enough strength to walk out of the hospital. I went home proceeded to do my own research and find the help I needed from friends/colleagues. I was in so much pain all over my body and had to sleep on a hard floor ( with my dogs 😀 ) for two months because the bed was too soft and the slightest strenuous movement was too painful. It took a good year before I was completely pain-free and the tinnitus became tolerable. G-d help anyone in a similar situation that doesn’t have the same level of education to help themselves. These meds should be banned!!!!!!!!!!”

“With the possible exception of darifenacin (Enablex), anticholinergics (antimuscarinics) used in treatment of overactive bladder also increase the risk of QT prolongation and torsade de pointes. Perhaps we should show particular caution in prescribing fluoroquinolones for patients using longterm anticholinergic medications.”

“Maybe physicians should consider side effects more and potential for developing resistance. Cheaper first generation drugs can still be used effectively without going to the big guns for minor infections.Patients don’t always understand potential consequences. Physicians should.”

“It has been more than ten years ago now when the medical director of one of the hospitals I was on staff at told me that flourquinolones was appropriate first-line therapy for a UTI. I vehemently arqued with him to no avail. There was no changing his mind.

Tell me, did he sell out or was the drug manufacturer’s campaign so high powered to convince everyone, except me, that this was appropriate care?”

“Nice article. Warning may also include their effect on sleep, causing insomnia.”

“My father got severe drug reaction with ciprofloxacin in the form of bone marrow failure. I have also been reported cases of bone marrow suppression and skin rashes with ciprofloxacin. It needs further careful observation.”

 

 

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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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Articles About Fluoroquinolone Toxicity to Give to Your Doctor

People often ask for articles about fluoroquinolone toxicity to share with their doctors.  Following are a few articles that I recommend.

What you should share with your doctor depends on your doctor’s willingness to read what you give him or her.  Doctors are busy.  Most of them don’t have the time, energy or inclination to keep up with all of the latest drug research.  They depend on the FDA to regulate drugs and they assume that if a drug has been on the market for years, it must be safe.  They are wrong in those assumptions.  It would be more appropriate for them to assume that all of the mysterious diseases of modernity (fibromyalgia, chronic fatigue syndrome / M.E., autoimmune diseases, allergies, dietary intolerances, autism, etc.) are due to the damage that pharmaceuticals are doing to the mitochondria, microbiome, endocrine system, etc.; and the feedback loops between those delicate systems.  Unfortunately, most doctors haven’t had that epiphany quite yet.  Here are some articles that can at least introduce Fluoroquinolone Toxicity Syndrome to them:

Show your doctor this if 4 sentences is his/her limit:

I’m going to ruffle feathers, but I’ll tell you anyway” By Suzy Cohen

SuzyCohen

Here are more details on fluoroquinolones being chemo drugs, as Suzy Cohen notes: “ CIPRO, LEVAQUIN AND AVELOX ARE CHEMO DRUGS” by me (Lisa Bloomquist) on Hormones Matter.

For doctors who are willing to take the time to read a few articles, but aren’t going to spend a lot of time looking into FQ toxicity, I recommend that you show them these:

  1.  Dear Doctor letter written by Dr. Plumb, a doctor who was Floxed
  2. New York Times article by Jane Brody, “Popular Antibiotics May Carry Serious Side Effects
  3. PBS Frontline expose about fluoroquinolones
  4. Forbes article by Melanie Haiken, “Antibiotic Alert: The Drug the Doctor Ordered Could Cause Deadly Side Effects
  5. Fluoroquinolones 101” by me (Lisa Bloomquist) on Hormones Matter.

For doctors who are willing to read journal articles about fluoroquinolones, I recommend these:

  1. Physical Medicine and Rehabilitation (PM & R) “Musculoskeletal Complications of Fluoroquinolones: Guidelines and Precautions for Usage in the Athletic Population
  2. Science Translational Medicine, “Bactericidal Antibiotics Induce Mitochondrial Dysfunction and Oxidative Damage in Mammalian Cells
  3. Journal of Young Pharmacists, “Oxidative Stress Induced by Fluoroquinolones on Treatment for Complicated Urinary Tract Infections in Indian Patients
  4. Molecular Pharmacology, “Delayed Cytotocicity and Cleavage of Mitochondrial DNA in Ciprofloxacin Treated Mammalian Cells

There are more than 100 other useful peer-reviewed research articles on the Links & Resources page of Floxie Hope.

Another thing that you can do is go over the FDA warning labels for the fluoroquinolones with your doctor:

  1. FDA Datasheet – Ciprofloxacin (Cipro)
  2. FDA Datasheet – Levofloxacin (Levaquin)
  3. FDA Datasheet – Moxifloxacin (Avelox)

The severity of adverse reactions to fluoroquinolones isn’t noted anywhere on the labels.  Nor is the fact that symptoms can be delayed.  It is assumed, by everyone, that adverse drug reactions are transient and that they will stop when administration of the drug has stopped.  This isn’t true for fluoroquinolones.  The adverse effects listed on the fluoroquinolone warning labels are multi-systemic and perhaps your doctor should wonder how and why fluoroquinolones cause multi-symptom, chronic illness.

Most people, doctors and patients alike, think that adverse reactions to fluoroquinolones are rare.  If you feel like going over this post with your doctor, I think that I make some good points in it:  “Is Fluoroquinolone Toxicity Rare?

Multi-symptom chronic illness brought on by a chemotherapy drug masquerading as an antibiotic is something to take seriously.  If your concerns are not taken seriously, I highly recommend finding another doctor.

And please thank the doctors who listen to you, read the articles that you give them and start being more prudent with their use of fluoroquinolones.  When a critical mass of doctors realize the dangers of these drugs, we’ll start seeing change.  I thank every one of you who takes the time to talk to your doctors about fluoroquinolone toxicity.  It does a lot of good.

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