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The Fluoroquinolone's Inconvenient Truth
If you are newly floxed, letās say two years or less, or if you are in a bad space emotionally itās probably best that you pass this article over.Ā Seriously.
When I started this website years ago, I was faced with an overwhelming about of data.Ā Here I was, blogging about fluoroquinolones (FQās) as a cathartic release, unprepared for the road on which I was about to travel.Ā Literally, I was totally unprepared to face the number of people who were travelling, more or less, the same road.Ā I knew a lot of people had experienced these adverse drugs events (ADEās), but the actual numbers ended up beyond my imagination.Ā Ā As a matter of fact, prescription drugs are the third leading killer of people in the U.S. and Europe, only second to heart disease and cancer (1), the the FQās are a big part of that.Ā
ADEās have complex manifestations, and the FQās are the poster children of complex manifestations.Ā The modern medical establishment has a very tough time recognizing ADEās from pharmaceuticals, even from those drugs that are likely to create ADEās, so asking them to recognize FQ ADEās is nearly impossible. Ā
The FQ class of antibiotics are capable of setting into motion an idiopathic syndrome that causes numerous symptoms, of which can number into the several hundred. The adverse events of FQās are often disparate and by all definitions outrageous to a classically trained doctor.Ā Although I am not making excuses, there really is no way to quantify this type of insidious damage based on the training of most doctors.Ā
Mining data from this realm is challenging to say the least, and, the people who are supposed to be doing it, arenāt. That, unfortunately, leaves schmucks like me left to do the dirty work.
Regulatory agencies and pharmaceutical companies, despite now having access to decades of FQ prescribing data, are dropping the ball.Ā One could easily surmise that they are doing this intentionally because if they did, we would uncover many ugly inconvenient truths. Ā
I, regrettably, have been wading waist deep in this anecdotal collection of FQ ADE information since I started this website since 2009, but at least some of it has come to fruition.Ā Scholars like Dr. Bennett, Dr. Noble, Dr. Golomb, and others, have tapped me for data in one aspect or another, and I have contributed to the occasional academic paper on FQās.
I have found, more often than not, that the FQ data trail leads us into areas where we do not want to go; areas that we would normally avoid, if it were up to us.Ā Ā One of these ugly inconvenient truths that I would like toĀ away from but keeps rearing its ugly head is what the medical community refers to asĀ ālate effects.ā
Late effects are defined by the National Cancer Institute as health problems that occur months or years after treatment has ended (1).
Actually there are only a few classes of drugs that are recognized by the medical establishment as causing late effects.Ā Ā Among them are topoisomerase inhibitors that are used in anti-cancer therapy (chemotherapy) such as etoposide, teniposide, doxorubicin, daunorubicin, mitoxantrone, and amsacrine (2).
Yet, the FQās are topoisomerase II inhibitors.
We expect late effects in some patients who take systemic Topoisomerase Inhibitors for cancer, but the medical system totally dismisses them in patients who take Topoisomerase II Inhibitors as antibiotic therapy.Ā
The late effects are there, but the medical establishment isnāt looking for them.
Like ripples on a pond, these late effects are spreading out throughout society, and not getting connected back to the FQās.
Ever since my entrance into this hellish word called floxing, I have been loosely documenting cases of individuals who were exposed to FQās, assumed a recovery, and then developed ālate effectā much later on, or those who took and FQ and had an unremarkable course of therapy and then later, much later, developed health problems.Ā
There are two falsehoods that have become apparent to me.Ā
The first, and the most obvious to those who have been personally impacted by the FQās,Ā is that the general population is being sold a false bill of goods that these drugs are safe.Ā Many doctors, researchers, and the like, find these drugs are impeccably safe. Why? Because they are not looking for the long term collateral damage.Ā Ā Their eyesight for ADEās is myopic and narrow.
The second, and the most unpleasant one, if you suffered from an adverse event, no matter how small,Ā you are home free once you recovered.
Initially, years ago I thought that the pools of late arrivals (those suffering from what is referred to as delayed adverse events), and those returning after having apparently recovered, were both very small.Ā Regrettably, time has shown me that these pools are much larger than I previously thought.Ā And that is just from the people who āconnected the dotsā linking their new health problems to the FQās they had much earlier.Ā
This begs the hypothetical question, āHow many people donāt actually make the connection?āĀ The obvious answer is that weāll probably never know as the data gets lost in the noise, and the medical establishment will never blame it on the antibioticā¦. ever. Ā
The worldās belief structure about the FQās, driven by the medical community, is built on false narratives about safety that frankly donāt exist.
There are many reasons why the FQās have fallen so handily into a protective niche in our society: they came on the scene at the perfect time before our knowledge of mitochondria was more advanced, their method of action is poorly understood by the medical community, their unique method of action allows for the development of late effects which separate cause and effect, and medical cognitive dissonance, just to name a few.
I do think that most doctors suffer from cognitive dissonance.Ā Ā Ā
Cognitive dissonance is a universal human phenomenon and it is based on the assumption that people want consistency between their expectations and reality. Because of this they contort their thinking into knots to make that happen. In the case of ADEās, to preserve the notion that our efforts help rather than hurt, their impulse is to attribute the harm to something other than their intervention.
Obviously, a cognitive dissonant attitude drives the failure to connect ADEās to the guilty medications.Ā This not only fails the patients, but again it fails in reporting statistics which leads the FDA to grossly underestimate the ADEās experienced by patients.Ā The bottom line is that doctors and patients believe that the FQās are much safer than they really areā¦and they cling to this belief, despite evidence to the contrary.Ā
Today, however, one of my biggest demographics is individuals who have assumed complete healing and have returned.Ā My data also shows that when they return, many are less vocal than before; they tend to shun FQ related social media and other outlets, so the community doesnāt hear a lot of the stories told by these unfortunate souls.Ā However, in my little niche, I do, and with regular frequency.
Many times, returning individuals end up in more specific communities such as chronic fatigue, peripheral neuropathy, mitochondrial, neurological, and on and on.Ā They have one thing in common however, the FQās were the initiator.
The detractors to this inconvenient truth are varied, from those entrenched in our political and medical system, to those new to this horror, and to some who are in self-denial.
With hindsight starting to allow us to peer into the once fog shrouded statistics, we start seeing the ugly anecdotal ties to Parkinsonās, ALS, Alzheimerās and a whole host of other, albeit less serious but still terribly disabling pathologies.
When you look at the recovery stories through this lens, the veracity of the statistics takes on a whole new dimension. Peopleās recovery, like levels of pain, are subjective, since no one uses the same standard to describe their recovery.Ā I often get asked the question āWhat does a recovery look like?ā
When you weed out the ones who were probably never floxed in the first place (those who recovered from deathās door in six months or less and are back jogging), or those suffering some other health malady with overlapping symptoms, and then analyze the scant long term data that we have, the picture is . . . not real pleasant.
For those poor returning souls this situation creates a conundrum.Ā Their message, along with their data, gets lost, delegitimized. It is an inconvenient truth that gets relegated to the dark fringes of the FQ community.Ā The medical establishment treats these patients the same way, like pariahs, especially if the try to blame their ADEās on FQās.Ā This often forces drastic measures.
One floxie who I will call āBillā told me his story which epitomizes this situation:Ā Ā
It was about a year and a half or so after floxing, Bill started to feel great. He never really was that active in the online support community, feeling a bit out of place or uncomfortable in most conversations.Ā He remembers telling a few people he was feeling better, so he left, setting the FQ community firmly in his rear view mirror. He was happy to have this bad nightmare behind him. He continued to carry on with his life, yet over the next several years he realized something was not right.Ā Unfortunately, he started experiencing unusual fatigue and eventually developed some neurologic symptoms. In the back of his mind he knew exactly where these problems stemmed from. Again, most doctors were of no help so he sought out a new doctor, but with a different twist. Frustrated and wanting to get some help, Bill took a drastic step, he lied to his new doctor, telling him that he was suffering from late effects from chemotherapy that he had years earlier.Ā Ā Bill knew this proposition was dicey and that he would have to maintain the faƧade, however, for the first time, he received some recognition, instead of a blank stare.Ā Ā
Time will tell where this leads him. In a sense, Bill wasnāt lying.Ā He did in fact have a Topoisomerase II inhibitor, he had Levaquin.
To his body, metabolically he received a course of chemotherapy. Ā
Bill, who thought he was home fee, fell back into the black hole of long term collateral damage from floxing.Ā
For many, calling Billās story rare or unusual makes them feel better.
The inconvenient truth is that Billās story is not rare or unusual. The messages of toxic positivity, which I wrote about here, take away from the true devastation that these drugs cause.Ā Regrettably, medical professionals and policy makers gravitate towards recovery messages and use them as excuses to look away.Ā This feeds into the cognitive dissonance that I mentioned earlier.Ā The resulting output is the belief that serious long lasting damage is rare and that these drugs are safe.Ā
My premise; its all an illusion.Ā
FQAD outcomes are blurry at best.Ā There is no long term tracking data done of the floxed population.Ā Ā Although my capabilities are limited,Ā my statistics donāt paint a pretty picture.Ā
This begs another hypothetical question and one that I, like I mentioned earlier, get confronted with on a regular basis, āWhat does a true recovery from the FQāsĀ look like?āĀ Many times I am asked to speak comfort, when I canāt.
In reality, how many individuals go on to develop other health conditions years down the road related to the FQās?Ā I think the truth would shock us all.Ā Ā
What about the athlete who can no longer perform in peak condition?Ā Or a police officer that canāt chase after a suspect?Ā A secretary who can no longer āconcentrateā at her job? A typist who canāt type, a jogger who canāt jog, or a singer who canāt sing? You get the picture.Ā Ā
In first aid and triage they have aĀ phrase called theĀ walking wounded.Ā These are injured persons who are of a relatively low priority.Ā How many FQ related walking wounded are in our society?Ā
If politicians and doctors believe that FQ toxicity is a recoverable condition, it lessens the amount of energy put towards drug safety and curbing the use of these drugs.Ā It also alienates the multitudes that become permanently disabled, in one way or another, from these horrible medications.Ā They have no legitimate label, or recognition.Ā In other words it goes onā¦.forever.Ā
I donāt know the exact count of these disenfranchised and damaged people wandering about like battle weary survivors of an apocalypse, and I probably never will.Ā All I know is that they are there, and there many more than I had even begun to imagine when I started this endeavor.
Do you know of a loved one, a friend, a co-worker, or someone else who suffers from a diagnosis of mysterious origin, such as peripheral neuropathy with an unidentified cause? If so ask them to do some detective work to find out if they have had FQ usage in their past, and not necessarily their immediate past.Ā Tell them that FQās are often given during surgery, often without the patientās knowledge.
If you are faced with potential antibiotic use, for yourself or a loved one, please become informed as to the choices that you have available. If antibiotic use is necessary, there are generally safer alternatives than the Fluoroquinolones.Ā Ā Discuss all concerns with your doctor about treatment to help you choose the safest method.
