Honesty is Better Than Sugar Coated Truth

This is a complex article to write. It is controversial and could be really tough on anyone newly floxed. It deals with  subjects that some could find depressing, so my recommendation is to skip this article if you are in a dark place psychologically.  If you are in having a stressful day then I recommend you go here instead.  If you decide to read on you have been warned.

This is one of those articles that I vacillated over writing for a while.  A recent email conversation with an outspoken doctor finally became the impetus for finishing this article.  But first some background info…

Invisible Illness

No one truly knows how many individuals suffer from Fluoroquinolone Associated Disability (FQAD).  Taking a step back and taking a cursory overview of how many fluoroquinolone (FQs) antibiotics are prescribed (hundreds of millions) worldwide then factoring in the ‘acknowledged’ adverse event percentages, leaves us with a mind boggling amount of individuals that could be or are suffering from FQAD in our society. Now, couple this with the fact that many of the mystery illnesses such as fibromyalgia, chronic fatigue syndrome, or similar health issues could have their origins tied directly or indirectly to FQ’s, elevates this to a tragedy that is beyond comprehension.

On top of this, many FQAD sufferers fall into the realm of the invisible illness. Not only do FQAD sufferers have to put up with challenging, painful, and debilitating conditions every day, but on top of that, you may have to face skepticism from friends, family, and co-workers, as well as strangers and medical professionals, all of which don’t understand what’s wrong with you.

In my opinion, the medical establishment is particularly culpable because, besides inappropriate prescribing of FQ’s in the first place, they do a terrible job at differential diagnosis when it comes to those who report adverse events while taking an FQ.  In other words, if it can be blamed on something else, it will be.

Because of this, it is so vitally important that we continue to get the word out: That we educate, advocate and push for more research and greater understanding from the medical community.  Yes, we have made some tremendous strides, but we cannot stop and just bask in our accomplishments because we have a long way to go.  The foes that are lined up against us are strong and well entrenched and can come from the most unexpected of places.

Additionally, as we proceed along this path, we must make sure that we do not unwittingly ad burdens to or throw roadblocks in our path for recognition and justice.   This is the main point of this article.

Interesting conundrum

Within the last year I had a poignant on-going email conversation with a doctor that made me realize how easy it is to unwittingly present vital misconceptions.  Whether we like it or not, some misconceptions can contribute to the ongoing fluoroquinolone (FQ) tragedy.  The conundrum is both controversial and at the same time a double edge sword that cuts both ways with no easy answers.

On Occasion, I will have an interesting conversation, usually via email, with medical professionals searching for information.  Not that these conversations happen that often, but they do happen from time to time and they can lead to interesting and sometimes colorful interchanges. Some medical professionals share their strong opinion regarding FQ’s while others are genuinely looking for information after complaints from patients.

The spectrum of personalities runs the gamut from well-meaning compassionate health practitioners to condescending self-absorbed narcissists who believe that they possess god-like qualities.

Initially, this email was from a doctor who was looking into FQ Toxicity and this email blossomed into a lengthy interchange. This was post Nov 5^th, 2015 FDA meeting and he wanted to see if there really was something to FQ Toxicity.  In his words he wanted to see if there were “truthfully a large number of people falling through the cracks or instead a small but very vocal group of people.”

Although I was encouraged with his willingness to do the research, I was equally disheartened and frustrated with the conclusion he made.

First on a positive note, this particular doctor did come to the conclusion that FQ’s can cause adverse events.  Having seen FQ’s used in the ICU, he saw firsthand some adverse events that, in his words, were ‘part and parcel’ when using such a powerful antibiotic.  He did however agree that the FQ’s should be used more judiciously, especially in the geriatric realm. Additionally, he went on to acknowledge that if a person did have an adverse event to the FQ’s there was really nothing much that a physician could do except stop the medication and support the patient symptomatically.

I thought to myself, “Great! At least we have some common ground to work from!” But then he came to a disheartening conclusion.  He told me that he truly believed that FQ toxicity is, for the most part, a  recoverable drug reaction.  Basically, his thought process was, stop the medication,‘ride it out’, and you will eventually recover. To me, this type of thinking is particularly dangerous because it does not respect the level of damage that the FQ’s can inflict.

Naturally I was perplexed, how could an educated doctor seeking truthful answers come to such a conclusion?   So, I very courteously asked him how he arrived at this decision.  “Well, by doing a cursory search of the internet.  Although it appears that you have a few that have had unfortunate drug reactions, and I acknowledge that, but I see a majority recovering from their reactions.” he answered.

He went on to say, “like most pharmaceuticals, I think only a very small number of patients are actually permanently harmed by the FQ’s. Statistically those numbers are no more or less than any other pharmaceutical given their rate of prescription, and you need to remember that every pharmaceutical has a propensity for harm. However I am seeing many stories of recovery, which is encouraging and seem to be the majority. ” He concluded by saying, “There will always be a few people that get harmed by any pharmaceutical; It is the nature of the beast.”

Now, I understood that this doctor, like most doctors who are pressed for time, did a cursory overview and did not frequent the private Facebook pages, or do an in-depth search of personal stories  or he might have a come to a different conclusion.

Opaque Landscape

If you dive deep into the FQ community you will quickly learn that most floxies aren’t alone in feeling that all, or most, of the doctors are failing them.  Truth be known, having spent time in discussion with medical types, many feel that the medical community is failing the patients as well, especially in the area of listening and responding to adverse events. These candid discussions truly reveal an opaque land of medicine where actual reality is much more dysfunctional than the average person can even possibly imagine.

Although, as floxies, we are keenly aware of the pervasive health-care problems, few of us have a clear idea of how truly disillusioned many doctors are behind the scenes as well.  I am not making excuses for ignorance, but if truth be known, I think many doctors believe the system has shifted profoundly towards the negative over the last decade making harder to care for complex cases.

This does not bode well for any patient. It is bad enough to be a patient with simple needs in an already dysfunctional system, but when you throw in a complex patient, such as a floxie, you can understand why most floxies come away with the opinion that they will never again go to a doctor or a hospital again.

So, from my standpoint, having a doctor that was interested or at least engaging in an honest conversation about FQ’s  was both rare and enlightening.  In my opinion this doctor was either truthfully portraying what he saw,  a sanitized version of floxing, or he was himself engaging in plausible deniability.  Either way, I did not want to end the conversation. So I pressed him for more details about his decision, hoping to open more doorways in which I could enlighten him on the true horrors of floxing.

His observations led me to have to address a truly uncomfortable reality yet again.  A reality that I had dealt with years ago but unfortunately rears it’s ugly head in the minds of newly floxed individuals, time and time again.

Sugar Coating A Double Edged Sword That Cuts Both Ways

I won’t pull any punches, FQ toxicity is horrific.  I have seen it kill, maim, cripple, destroy marriages, families, and finances.   Basically, it has the propensity to ruin lives, and it does that to countless numbers on a daily basis.  Couple this with the fact that most medical professionals deny its existence in its truest form and therefore deny the possibility of providing comforting care, make this a travesty of overwhelming proportions.

Sugar coating this stark reality is a grave injustice and it makes the double edge sword more damaging.  Oh sure, we want to recover, we want to see our floxed friends and family heal and get on with their lives. Lord Knows I do. But the brutal truth is that we live in fear of a very ugly reality as well.  A reality that we are often scared to look at for fear that it might befall us.

Defining Reality

Although the doctor did not come right out and accuse me, he basically intimated that my opinion of FQ Toxicity was influenced by “my reality.” He implied that since I basically immerse myself in a group of chronically ill floxies, I only see the world from that perspective. Evidently this doctor felt he had the ability to rise above such bias and see things more unprejudiced.  Or put in other words, he implied  that I see the world through rose, or FQ, colored glasses.

Now, to say that I have never taken a FQ biased perspective on my part, into consideration, is foolhardy to say the least.   I generally pride myself on my ability to critically think and although not perfect by any means, I try to take my own personal biases into consideration to avoid over reacting. If anything, I am occasionally too gullible. On a side note, if one would even do a cursory search of my website, one would realize that I portray all possible outcomes to floxing.  But to be fair to the doctor, I have to admit that I do mostly focus on collecting information from those chronically floxed, which is quite numerous I might add.  Despite that fact, I try to avoid getting pigeonholed.  And here comes a caveat, yes, I have had contact with lots of people over the years that experienced significant health improvements.

However, having been at this for almost ten years and having had contact with countless individuals (I get emails every day of the week from newly floxed), I would have to say that I very rarely ever see anyone who has had a fairly significant adverse event to the FQ’s make a complete 100 percent recovery.   I know this is scary.  I get it! It happened to me.  I have dealt with the fear and spent many nights in the depth of despair caused by the absolute uncertainty.

Despite the victories or the stories of recovery, this travesty must not be pushed aside or dismissed, for if one life is ruined or destroyed, it is one life too many.   The truth is, there are still too many lives ruined.   And like I mentioned before, when you take in to account untold cases of fibromyalgia, chronic fatigue, and neurodegenerative conditions like ALS and Parkinson’s (1), many of which could have their start in the epigenetic influences (2) of the FQ’s, the scope is mindboggling.

As chronic floxies that have been battling this for years know, if people come on the scene and then six months later are claiming complete 100 percent recovery, they were either blessed with a very, very mild adverse event or there is a good possibility they were not floxed in the first place.  Initially, to the inexperienced, floxing symptomatology is such a wide spectrum that it can understandably overlap with other pathologies.  However, I have found that the FQ’s are more sinister than that; Whether it is a man who ruptured a tendon two years after pronouncing himself recovered, to a woman who came down with a debilitating case fibromyalgia after declaring herself recovered, I have heard many such stories.

Now, for those folks, who did not heed my initial warnings about this article, and have read this far, and are starting to worry, I will throw in another caveat.

Do some people experience healing? Yes.  Do many people regain functionality in life and move on? Yes.  

Denying reality does not change it.

Phillip K Dick, American Science Fiction writer said, “Reality is that which, when you stop believing in it, doesn’t go away.”

Denying the reality of what the FQ’s can do does not change the reality of what they actually do.  Instead denying that fact that they maim, kill and destroy also sends the wrong message to doctors and politicians.  It sends the wrong message to those who can change or correct the problem.

Why would someone want to deny the reality of what FQ’s can do?

Well off the top of my head, I can think of several reasons.

First, for floxies, I am of the opinion that some folks think that by deflecting, qualifying, or softening the impact of harsh speech about the damages that FQ’s do it will somehow their temper their own adverse event.  They are afraid that truth will destroy hope.

Second, for doctors, plausible deniability is a powerful tool that is sued to abate guilt.   Intentionally looking the other way, or doing a poor job of differential diagnosis offers a modicum of doubt.  After all if you never seen a FQ adverse event, they don’t exist right?

Third, someone is trying to sell you shore-front land in Idaho.  No seriously, I actually have been criticized by some trying to sell or market health services.  So, those who are peddling ‘cures, solutions, or other treatment protocols’ have an interest is suppressing or re-defining reality as well.  It drives up traffic and sells products.

Third, the pharmaceutical companies would love to have stories of persistent permanent damages wrought by drugs such as the FQ’s watered down and dismissed completely.  We know that their influence on the medical industry has led to a wholesale denial of many adverse medication events.  We also know that they would love to control the conversation about pharmaceuticals in the area of the internet known as health space, including social media.

I am sure there are more, but attempts to squelch the ugly reality that these drugs cause, can be a grave miscalculation, and in my opinion contribute to the continuation of the ongoing struggle.

You see, but you do not observe. The distinction is clear.’ Sherlock Holmes Quote. -A Scandal in Bohemia.

At the root, aside from nefarious agendas, I think that we become scared to look at other people’s reactions because we fear that we might experience those adverse events ourselves.  So we engage in a sort of reverse psychology with ourselves.  We figure if we throw in caveats, that somehow those caveats will ‘cushion the blow.’

Because of this, I have seen those who are severely affected scared to speak their mind.  They are afraid that by expressing their reality, it will frighten or depress others.  Too often I have witnessed a chronically affected floxie make a statement about the reality of their situation only to have other people throw in qualifying statements to cushion the blow.  I think, subconsciously, the ‘qualifiers’ are doing so, so they mediate their own fears and insecurities.

Although I consider myself quite diplomatic, I do get tired of others floxies, and myself, having to throw in a caveat every time we attempt to address the harsh reality.   Common sense tells us that some people do see healing, while others do not.  The variables are great, but the truth is what it is.

A Watered Down Message

So what ‘do you’ say to a doctor who tells you he believes most everyone will recover from their floxing?

I know people are only going to see what they want to see and doctors are no different.  I made a valiant attempt to link mystery illnesses to FQ’s.  I told him that I would be rich if I had a dollar for everyone who claimed to be recovered and moved on, then contacted me later when they had a flare up or something chronic showed up.  I discussed late effects and delayed adverse events and asked him to always look at the patient’s chart to see if they had FQ’s in their medical history, especially if complaining of unusual symptoms.  Whether he walked away more educated, I do not know. He did tell me that “almost everyone has had a fluoroquinolone in their past” and I told him “even more the reason to suspect it as a culprit in the present.”

If doctors and politicians only see the watered down messages tailored to accentuate recovery and avoid the harsh reality experienced by many, they will not be motivated to change the status quo and more than likely it will be perpetuated indefinitely. Because, despite current warnings, FQ use still goes on unabated as old ones get retooled and new ones are entering the marketplace as antibiotics for human and animal use, chemotherapy and possibly anti-virals in the future.

The truth is that doctors and politicians do not read the fine print or look between the lines!  They must be faced with the hard cold truth!

Hope Necessary for Survival

Now before anyone feels like schooling me on negativity, I know more than anyone else that hope is needed for survival.   I consider hope among the most wondrous of gifts that can keeps us going when we want to quit. I, by the grace of God who gave me hope, have survived two heart attacks and endured years of suffering at the hands of FQ’s.  So, without hope I would have been sunk!

However, my thoughts have continually vacillated over the years between two extremes: on the one hand, that I would heal and walk away from this nightmare AND recognition that full healing, for me, was not likely and more overarching, something needed to be done about this worldwide travesty to protect family, friends, and the general society.

There Are No Easy Answers

So my questions to the world at large is this; Is this the message we want to send to doctors or do we want them to see a different reality of what FQ toxicity is? How can we spur interest in research and investigation if doctors think that mostly everyone will recover? How can we change the FDA and influence drug policy with a sugar coated message? And how do we diplomatically balance this with new floxies who do not want to hear the harsh reality?

I do not have easy answers to these questions. But I do know one thing, sending the wrong message reinforces misconceptions, slows research and advocacy, and plays into the hands of the ‘powers that be’ that would like to see this situation just go away.

For now, “Honesty is better than sugar coated truth.”