#dr. noble

[pigeonparker]

Loved tonight's episode of Casualty, and there were so many Will and Archie parts

So I decided to make some gifs

(please don't steal then🥺)

(please don't steal then🥺)

[fqtoxicity]

New Post has been published on My Quin Story

New Post has been published on http://www.myquinstory.info/the-fluoroquinolones-inconvenient-truth/

The Fluoroquinolone's Inconvenient Truth

If you are newly floxed, let’s say two years or less, or if you are in a bad space emotionally it’s probably best that you pass this article over.  Seriously.

When I started this website years ago, I was faced with an overwhelming about of data.  Here I was, blogging about fluoroquinolones (FQ’s) as a cathartic release, unprepared for the road on which I was about to travel.  Literally, I was totally unprepared to face the number of people who were travelling, more or less, the same road.  I knew a lot of people had experienced these adverse drugs events (ADE’s), but the actual numbers ended up beyond my imagination.   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 FQ’s are a big part of that. 

ADE’s have complex manifestations, and the FQ’s are the poster children of complex manifestations.  The modern medical establishment has a very tough time recognizing ADE’s from pharmaceuticals, even from those drugs that are likely to create ADE’s, so asking them to recognize FQ ADE’s is nearly impossible.  

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 FQ’s are often disparate and by all definitions outrageous to a classically trained doctor.  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. 

Mining Data

Mining data from this realm is challenging to say the least, and, the people who are supposed to be doing it, aren’t. 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.  One could easily surmise that they are doing this intentionally because if they did, we would uncover many ugly inconvenient truths.  

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.  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 FQ’s.

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.   One of these ugly inconvenient truths that I would like to  away from but keeps rearing its ugly head is what the medical community refers to as  ‘late effects.’

Late Effects

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.   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 FQ’s are topoisomerase II inhibitors.

See the disconnect? 

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. 

The late effects are there, but the medical establishment isn’t looking for them.

Like ripples on a pond, these late effects are spreading out throughout society, and not getting connected back to the FQ’s.

Ever since my entrance into this hellish word called floxing, I have been loosely documenting cases of individuals who were exposed to FQ’s, assumed a recovery, and then developed ‘late effect’ much later on, or those who took and FQ and had an unremarkable course of therapy and then later, much later, developed health problems. 

Falsehoods

There are two falsehoods that have become apparent to me. 

The first, and the most obvious to those who have been personally impacted by the FQ’s,  is that the general population is being sold a false bill of goods that these drugs are safe.  Many doctors, researchers, and the like, find these drugs are impeccably safe. Why? Because they are not looking for the long term collateral damage.   Their eyesight for ADE’s is myopic and narrow.

The second, and the most unpleasant one, if you suffered from an adverse event, no matter how small,  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.  Regrettably, time has shown me that these pools are much larger than I previously thought.  And that is just from the people who ‘connected the dots’ linking their new health problems to the FQ’s they had much earlier. 

This begs the hypothetical question, “How many people don’t actually make the connection?”  The obvious answer is that we’ll probably never know as the data gets lost in the noise, and the medical establishment will never blame it on the antibiotic…. ever.  

The world’s belief structure about the FQ’s, driven by the medical community, is built on false narratives about safety that frankly don’t exist.

Cognitive Dissonance 

There are many reasons why the FQ’s 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.     

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 ADE’s, 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 ADE’s to the guilty medications.  This not only fails the patients, but again it fails in reporting statistics which leads the FDA to grossly underestimate the ADE’s experienced by patients.  The bottom line is that doctors and patients believe that the FQ’s are much safer than they really are…and they cling to this belief, despite evidence to the contrary. 

Unpleasant Truths

Today, however, one of my biggest demographics is individuals who have assumed complete healing and have returned.  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 doesn’t hear a lot of the stories told by these unfortunate souls.  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.  They have one thing in common however, the FQ’s 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 Parkinson’s, ALS, Alzheimer’s 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. People’s recovery, like levels of pain, are subjective, since no one uses the same standard to describe their recovery.  I often get asked the question “What does a recovery look like?”

When you weed out the ones who were probably never floxed in the first place (those who recovered from death’s 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.  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.  The medical establishment treats these patients the same way, like pariahs, especially if the try to blame their ADE’s on FQ’s.  This often forces drastic measures.

One floxie who I will call ‘Bill’ told me his story which epitomizes this situation:  

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.  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.  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.   Bill knew this proposition was dicey and that he would have to maintain the façade, however, for the first time, he received some recognition, instead of a blank stare.  

Time will tell where this leads him. In a sense, Bill wasn’t lying.  He did in fact have a Topoisomerase II inhibitor, he had Levaquin.

To his body, metabolically he received a course of chemotherapy.  

Bill, who thought he was home fee, fell back into the black hole of long term collateral damage from floxing. 

For many, calling Bill’s story rare or unusual makes them feel better.

The inconvenient truth is that Bill’s 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.  Regrettably, medical professionals and policy makers gravitate towards recovery messages and use them as excuses to look away.  This feeds into the cognitive dissonance that I mentioned earlier.  The resulting output is the belief that serious long lasting damage is rare and that these drugs are safe. 

My premise; its all an illusion. 

FQAD outcomes are blurry at best.  There is no long term tracking data done of the floxed population.   Although my capabilities are limited,  my statistics don’t paint a pretty picture. 

This begs another hypothetical question and one that I, like I mentioned earlier, get confronted with on a regular basis, “What does a true recovery from the FQ’s  look like?”  Many times I am asked to speak comfort, when I can’t.

In reality, how many individuals go on to develop other health conditions years down the road related to the FQ’s?  I think the truth would shock us all.   

What about the athlete who can no longer perform in peak condition?  Or a police officer that can’t chase after a suspect?  A secretary who can no longer ‘concentrate’ at her job? A typist who can’t type, a jogger who can’t jog, or a singer who can’t sing? You get the picture.  

Walking Wounded

In first aid and triage they have a  phrase called the walking wounded.  These are injured persons who are of a relatively low priority.  How many FQ related walking wounded are in our society? 

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.  It also alienates the multitudes that become permanently disabled, in one way or another, from these horrible medications.  They have no legitimate label, or recognition.  In other words it goes on….forever. 

I don’t know the exact count of these disenfranchised and damaged people wandering about like battle weary survivors of an apocalypse, and I probably never will.  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.  Tell them that FQ’s are often given during surgery, often without the patient’s 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.   Discuss all concerns with your doctor about treatment to help you choose the safest method.

Monetization Policy

[iris-trottingmare]

Pretty neat little shader I made in Maya. Thought I would try to replicate it in Unity. Not having much luck though.

[fqtoxicity]

The Personal Cost of Research has been published on My Quin Story

New Post has been published on http://www.myquinstory.info/researching-fluoroquinolone-toxicity-the-personal-cost-of-research/

Researching Fluoroquinolone Toxicity: The Personal Cost of Research

Doctors as part of their training are supposed to learn to “improve the quality of life for humankind, to service the underserved and to advocate for our patients who need most.” From the perspective of the Fluoroquinolone (FQ) community how many can actually say that they have truly been served by a doctor who practices by those principals?

It is an unfortunate fact that, in many cases, those from the FQ community have experiences with doctors that are, putting it mildly, less than ideal. Often times, the doctors deny, dismiss or downplay their patient’s testimony, especially when the patient’s experience falls outside the ebb and flow of the commonplace and the patient walks away feeling further victimized by the system. Although not impossible to find, one would have to agree that to find an altruistic doctor who is truly interested in the patient’s testimony is rare indeed despite the fact that altruism is supposed to be upheld as a goal and a responsibility for all medical doctors since Hippocratic times.

Fortunately we do have a few doctors in our community that chose to give our testimonies a public voice. Several years ago we started reaching out to doctors and academic researchers. At that time, three academic researchers answered our call. They were Dr. Charles Bennett, Dr. Beatrice Golomb and Dr. Mark Noble.

They have been willing to go against entrenched ideas, willing to put professional reputations on the line, and willing to face tremendous pressure from peers, associates, the FDA and drug companies to stand in defense of what they know to be the truth.

Many times by choosing the path of listening to our testimonies, presenting the facts in publications and conferences, and pursuing answers by researching fluoroquinolone toxicity, puts them at odds with very powerful entities in a high stakes game, which many academic medical professionals are not willing to participate in.

When I first entered the FQ community many years ago I was quite naïve to the ways of our current medical system. And now, after many years of knowing a handful of academic researchers, I realize the amount of pressure and peril they face in their professional and personal lives in the pursuit of our justice. If I were in their shoes, I do not know if I could stand up to the scrutiny.

Recently when Dr. Charles Bennett was interviewed by J. Ryne Danielson of the public relations office at the Medical University of South Carolina, he revealed the true nature of the battle they face and we often do not see.

Bennett, who heads up the Southern Network on Adverse Reactions or SONAR, oversees one of largest and most successful pharmaceutical watchdog groups in the country. According to Bennett “SONAR listens to people who have been harmed by an adverse drug reaction,” he said. “We give patients a voice.”

But doing so comes with a price. Bennett goes on to say that “You can’t do what I do and think the drug companies don’t notice you.” “Wyeth, Schering-Plough, Eli Lilly, Novartis, Roche, Genentech—you can’t find a major drug company that SONAR hasn’t found an issue with.”

With the media scrutiny and the Citizen Petitions filed over the last year putting the FQ’s square in the crosshairs of public attention, you can bet that Bennett has gotten the attention of some very powerful entities; entities that are going to push back in an effort to silence or undermine our message.

Bennett said many things can happen when one finds him or herself on the wrong end of a powerful corporation: “Sometimes you find that you’re not invited to conferences you used to be invited to. You’re kicked off committees. Sometimes they send private investigators after you.” “They’ve looked at everything I’ve ever done in my life,” Bennett said.

We, in the FQ community, must not take these truly rare academic researchers for granted, for they give us, who have been disenfranchised by the medical community, a legitimate voice.

Bennett concludes, “In my life,” he said, “I always wanted to be in a position to make a difference and to save lives through public health and public policy initiatives. I think that’s what I am doing. SONAR has saved tens of thousands of lives and billions of dollars. That’s a good day’s work.”

Let’s commit to support Dr. Bennett, the team at SONAR, and all the other academic researchers who put their credentials on the line to make sure our testimonies are not only heard, but for lending scientific credibility to what we know to be reality.

[fqtoxicity]

The Personal Cost of Research has been published on My Quin Story

New Post has been published on http://www.myquinstory.info/researching-fluoroquinolone-toxicity-the-personal-cost-of-research/

Researching Fluoroquinolone Toxicity: The Personal Cost of Research

Doctors as part of their training are supposed to learn to “improve the quality of life for humankind, to service the underserved and to advocate for our patients who need most.” From the perspective of the Fluoroquinolone (FQ) community how many can actually say that they have truly been served by a doctor who practices by those principals?

It is an unfortunate fact that, in many cases, those from the FQ community have experiences with doctors that are, putting it mildly, less than ideal. Often times, the doctors deny, dismiss or downplay their patient’s testimony, especially when the patient’s experience falls outside the ebb and flow of the commonplace and the patient walks away feeling further victimized by the system. Although not impossible to find, one would have to agree that to find an altruistic doctor who is truly interested in the patient’s testimony is rare indeed despite the fact that altruism is supposed to be upheld as a goal and a responsibility for all medical doctors since Hippocratic times.

Fortunately we do have a few doctors in our community that chose to give our testimonies a public voice. Several years ago we started reaching out to doctors and academic researchers. At that time, three academic researchers answered our call. They were Dr. Charles Bennett, Dr. Beatrice Golomb and Dr. Mark Noble.

They have been willing to go against entrenched ideas, willing to put professional reputations on the line, and willing to face tremendous pressure from peers, associates, the FDA and drug companies to stand in defense of what they know to be the truth.

Many times by choosing the path of listening to our testimonies, presenting the facts in publications and conferences, and pursuing answers by researching fluoroquinolone toxicity, puts them at odds with very powerful entities in a high stakes game, which many academic medical professionals are not willing to participate in.

When I first entered the FQ community many years ago I was quite naïve to the ways of our current medical system. And now, after many years of knowing a handful of academic researchers, I realize the amount of pressure and peril they face in their professional and personal lives in the pursuit of our justice. If I were in their shoes, I do not know if I could stand up to the scrutiny.

Recently when Dr. Charles Bennett was interviewed by J. Ryne Danielson of the public relations office at the Medical University of South Carolina, he revealed the true nature of the battle they face and we often do not see.

Bennett, who heads up the Southern Network on Adverse Reactions or SONAR, oversees one of largest and most successful pharmaceutical watchdog groups in the country. According to Bennett “SONAR listens to people who have been harmed by an adverse drug reaction,” he said. “We give patients a voice.”

But doing so comes with a price. Bennett goes on to say that “You can’t do what I do and think the drug companies don’t notice you.” “Wyeth, Schering-Plough, Eli Lilly, Novartis, Roche, Genentech—you can’t find a major drug company that SONAR hasn’t found an issue with.”

With the media scrutiny and the Citizen Petitions filed over the last year putting the FQ’s square in the crosshairs of public attention, you can bet that Bennett has gotten the attention of some very powerful entities; entities that are going to push back in an effort to silence or undermine our message.

Bennett said many things can happen when one finds him or herself on the wrong end of a powerful corporation: “Sometimes you find that you’re not invited to conferences you used to be invited to. You’re kicked off committees. Sometimes they send private investigators after you.” “They’ve looked at everything I’ve ever done in my life,” Bennett said.

We, in the FQ community, must not take these truly rare academic researchers for granted, for they give us, who have been disenfranchised by the medical community, a legitimate voice.

Bennett concludes, “In my life,” he said, “I always wanted to be in a position to make a difference and to save lives through public health and public policy initiatives. I think that’s what I am doing. SONAR has saved tens of thousands of lives and billions of dollars. That’s a good day’s work.”

Let’s commit to support Dr. Bennett, the team at SONAR, and all the other academic researchers who put their credentials on the line to make sure our testimonies are not only heard, but for lending scientific credibility to what we know to be reality.