My Quin Story

Posted By admin on December 3, 2009

This website was created to chronicle my experiences and observations, and the experiences and observations of others, with damage received after taking a fluoroquinolone antibiotic. This supposed “safe” class of drugs are given out in hundreds of perscriptions daily around the world.  These drugs can have horrific side effects that can disable the most healthy of individuals creating long lasting injuries.  These reactions are considered statistically insignificant by drug companies and the FDA, even though their rate of occurrence is fairly high. Often the victims do not know what has befallen them, not suspecting that these drugs could be the cause, especially in those individuals who experience reactions months or years after ingestion.  Compounding the problem, the medical community is woefully ignorant to their effects and the long term damages making the suffering endured by these drugs greatly increased.

Currently there is no medical cure and no magic bullet. My hope it to instill hope, through ways of coping through the symptoms of the damage. This is not a research site although speculation where future research maybe helpful could be listed here.  There are many active sites on the internet.  The Quinolone Vigilance Foundation is being formed to raise money for scientific research, for those that want to get involved.  For Facebook users I recommend, Fluoroquinolone Antibiotic Toxicity (Cipro, Levaquin, Avelox, Floxin) Facebook site. For many more link resources check out the links on the far right column. If you are new to this plight, please use caution when treading these waters, the information can be overwhelming and the opinions can be many. Please read my disclaimer regarding the use of this site.  Thank you.

Since starting this website I receive dozens of emails each week regarding FQ reactions, many from newly damaged individuals.  I do my best to return all emails in a timely fashion, especially urgent ones, but it can take a a few days in some cases.  If your prefer a phone call please include your phone number when corresponding.

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Posted By admin on March 8, 2012

The above famous quote,  “Absence of evidence is not the evidence of absence!” , is most often attributed to Carl Sagan.  Simply put, it means that if we don’t know that something exists, it doesn’t mean that it doesn’t exist.  It is a philosophy that is at the heart of our struggle to gain recognition of what we already know as a community to be true.

I have always been a very intellectual person who, like the folks from Missouri, needed to be shown the evidence.  I was a poster child for “evidence based” thinking.   So when medical test after medical test and doctor after doctor was unable to reveal a definitive diagnosis, I had do what was originally unimaginable; diagnose myself.  Like an amateur sleuth, each lead that I followed always ended up in the same conclusion; I was experiencing a syndrome of symptoms related to an adverse event from a fluoroquinolone (FQ) antibiotic. This adverse event was not only happening to me but it was happening to thousands of other individuals as well. This was a conclusion that I was having a hard time accepting. After all, my doctor, who clearly had more medical training than I, told me that fluoroquinolones are “safe and well tolerated.”  I had placed faith in a system that I was sure would not fail me.

It was not until most of my doctors started denying my claims of an FQ reaction that my faith in the medical system became very disillusioned. That faith was more of an intellectual confidence in an evidence based system then it was just pure blind acceptance.  What I did not realize, at the time, was that the medical system that I placed great faith in was, in part, an illusion: An illusion that was something akin to the movie “The Matrix” where the perceived world was not the actual world.  I did not like this new “real world” that I was experiencing.  For the first time in my life I felt discrimination, alienation, and dismissal.

How could this nightmarish scenario happen to me, and others, in our modern world?  For a long time I blamed myself for not catching this situation ahead of time and psychologically I still wrestle with the “why me” questions.  I knew that the medical system was not perfect and it made mistakes from time to time. After all, making mistakes is part of the learning process. Theoretically, the art of medicine is supposed to be a never ending science into unknown depths and challenges. Treatment theories are practiced over and over again until they become competent, but they are never actually perfected. Perfection cannot be reached because of the infinite amount of unknown variables that exist. The amount of unknown variables that exist within each person is staggering. So if perfection is never reached why does the medical establishment refuse to recognize our plight?  I suppose the answer to that question is more frightening to them than it is to us.  For if they were to readily admit that our plight is legitimate then they would be culpable in the damage done to society. Instead they engage in what is known as plausible deniability.  A condition in which the doctor can safely and believably deny knowledge of any particular truth that may exist because the subject is deliberately made unaware of said truth so as to benefit or shield the subject from any responsibility associated through the knowledge of such truth.  Because of this, you will hardly ever see a doctor put anything in writing.

We are getting mixed signals in the world today regarding our medical care.  On the one hand we have medical groups and doctors telling us to be proactive and advocate about our own health, educate ourselves about our unique health conditions, and become informed about treatments.  But these claims of self-empowerment are more often than not contradicted by the behavior of health care providers.  In reality, informed, assertive, and confident patients are often penalized for doing what they’ve been told to do.

Recently a member of the fluoroquinolone community related this story to me.  In preparation for a doctor’s appointment the FQ sufferer decided to bring in some documentation to bolster their viewpoint. Knowing that bringing in too many articles documenting proof of their symptoms was not a good idea because it could overwhelm the doctor within the limits of a harried appointment.  So they opted for clear concise examples to back up the reasonable hypothesis of their symptoms.  Well, like so many other stories we have heard before, the doctor implicitly denied their claims even though he could not give him a clear cut diagnosis. If that was not enough, to add insult to injury, the doctor even noted in their file that the patient had a “self-reinforcing delusion regarding fluoroquinolones and even brings in documents in an attempt to prove it.”  You are damned if you do, and damned if you don’t.

As frustrating as all this seems, I want FQ sufferers to know that we are not alone. Recent studies have shown that in more than fifty percent of the complaints that patients bring to the doctor do not have any diagnosable medical cause that can be revealed by laboratory testing.  Recently I wrote about patients that were aware of chemo brain but could not convince the medical community of its validity. The symptoms of chemo brain were attributed to other health conditions. Only recently, after years of attempting to convince the medical community, have studies been done that proves its existence.

Every day numerous individuals enter our ranks as they become statistics; unsuspecting victims in a war that is raging just off of society’s radar scope.  Because of this we must never give up our fight for recognition.  We must fight not only for ourselves, but for our families and for strangers that we have never met. The famous line from the movie Independence Day must be lifted as our battle cry, “We will not go quietly into the night!” We will not vanish without a fight! We’re going to live on! We’re going to survive!

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Posted By admin on February 29, 2012

Our enemy is a sly one. It is a drug that is a wolf in sheep’s clothing. It disguises itself amongst other antibiotics as a benign compatriot. Yet it behaves like no other and has the penchant to cripple and unmercifully maim. As if this weren’t enough, it is able to separate itself from the damage it inflicts. Through the unique ability to cause delayed adverse events, it creates the perfect storm by separating cause and effect. When the time comes, it then manifests itself in a dizzying parade of symptoms as it acts like a shape shifter and takes on the appearance of dozens of other illnesses that get the blame. Only those who have fallen victim to it actually understand its full potential. Even medical professionals themselves, who have been unlucky enough to become a victim, have been ostracized and dismissed by their own peers when suggesting FQ’s as the culprit. Some in society argue its existence is necessary, saying it’s power is needed to defeat an even more powerful enemy. But with great power comes great potential for damage; And when the cure becomes the disease, we have truly created a monster of epic proportions.

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Tags: Doctors, Philosophical, Psychological

Posted By admin on February 8, 2012

I had an interesting conversation with a critic recently that was the impetus for this article.  I do not mind talking to those who have differing or opposing positions as long as they can be expressed politely and professionally.   It is not uncommon to find someone who is opposed to the idea that fluoroquinolones can cause harm but this conversation ultimately took a surprising turn.

The other day I received an email from a woman who asked that I give her a call to discuss fluoroquinolone (FQ) usage and toxicity.  After calling her I ascertained that she had seen the PBS article, had seen the Facebook group and had read a few of the personal blogs.  I was initially intentionally aloof until I was comfortable with the fact that she genuinely wanted to have someone hear her concerns and not just complain.

Our conversation progressed in a predictable fashion.  She had been given a FQ in the last few years for an infection and knew many others who had taken FQ’s with apparently no problems.  She said that according to her observations these reactions represent a very small amount of people compared to the total amount of prescriptions.  I countered with how these reactions are grossly under reported and that in many cases the patient does not correlate the symptoms with the antibiotic and the symptoms are often blamed on other health conditions.   She alluded, with a slight amount of animosity in her voice, to the fact that the sufferers are nothing more than a desperate group of individuals that are merely suffering from some sort of a mass hysteria.  I told her that some sort of mass somatoform disorder is not possible due to the fact that there are literally tens of thousands of victims, spanning several decades, from all parts of the world, across every socio-economic level, encompassing every age group from young to old, and most were in above average health.

She, like most of the general public, and a majority of the medical community, believed that once these drugs are out of your system their penchant for damage was done.  I also informed her that these drugs are unique from all other antibiotics in their method of action and are too powerful for routine use.  They behave like chemotherapy medications.  I asked her if she ever heard of chemo brain.  She vaguely remembered hearing about it.  Chemo brain, described as mild cognitive impairment, affected those receiving chemotherapy treatments and would manifest itself some time after treatment and could last for a very long time.  For years, patients had been aware of chemo brain but could not convince the medical community of its validity. The symptoms of chemo brain were attributed to other health conditions. Only recently, after years of attempting to convince the medical community, have studies been done that prove its existence.

Like, chemo brain, fluoroquinolone toxicity syndrome has the ability to manifest itself long after treatment.    For years, patients have been aware of fluoroquinolone toxicity syndrome and have been trying convincing the medical community of its validity.  Instead, through the woeful ignorance of the medical community, patients have been diagnosed with a myriad of other vague health conditions that have only become more prevalent in the last few decades incidentally coinciding with the entrance of FQ’s into society.  Meanwhile most patients know in their hearts the real cause of their problems.   I call this denial by the medical community “The Semmelweis Effect” which I wrote about in a previous article. The Semmelweis Effect takes place when a credible, articulate, intelligence patient presents a plausible mechanism for their medical problem, in the absence of any irrefutable diagnosis, and is dismissed by the medical establishment.

Near the conclusion of our conversation I had the feeling in my gut that I had conversed with this woman before.  Not by phone but by written exchange over Facebook or some other social medium. I understood her ignorance; after all she was placing blind faith in our medical system.  I too had misplaced my faith in the same medical system until I became a statistic.  She, like so many other people including doctors, tell us that our reactions, like all drug reactions, are rare.  But in truth, just how rare are adverse drug reactions?

The University of Toronto revealed that pharmaceutical drugs kill more people every year than are killed in traffic accidents. Their study is said to show that more than two million American hospitalized patients suffered a serious adverse drug reaction within the 12-month period of the study and, of these, over 100,000 died as a result. The researchers found that over 75 per cent of these ADRs were dose-dependent, which suggests they were due to the inherent toxicity of the drugs rather than to allergic reactions.  These statistics are absolutely shocking and these are just the ones that have been tracked.  Imagine how the number would change if we could account for all the adverse drug reactions that patients and doctors were unable to connect back to the source drug.

It just so happens that serious adverse drug reactions are not rare at all, we just choose to stick our heads in the sand and ignore the statistics which are there for all to see.  We assume that things like this always happen to the “other guy” and never to us.  Nearing the end of our conversation I think that she understood more about the plight of the fluoroquinolone community.  I told her I was grateful that we were able to share such a civil conversation on the subject.   Finally we engaged in some small talk discussing our health issues like so many people do. In an ironic twist, which could only have been designed by the hand of fate, she told me that within the last month she had been diagnosed with fibromyalgia.  There was a long pause on the telephone, then she asked me “You don’t think…?” as her words stuck in her throat. I answered back “It sounds as though your connecting the dots.”

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Posted By admin on December 29, 2011

I have experienced a true delayed adverse reaction to these drugs.  Because of this, over the years I have been seeking out and interacting with others who have also experienced a delayed adverse reaction.  Why?  For many reasons these reactions are different than the acute “shotgun” type reactions experienced by many individuals that are more immediately toxic in nature.  The delayed adverse reactions are more rare, but not that rare.  The reason for the rarity lies in the very nature of the reaction itself.  Because of the unique ability of these medications to separate cause and effect, many individuals never make the connection between the medication and their illness.  This behavior, which goes against what is taught to most medical students, will almost never get connected back to the drug by a physician and almost always has to be discovered by the patient themselves.  If the patient never connects the dots he/she may never uncover what the root cause of his/her mysterious illness is, or are given a default diagnosis that is a “catch all” for the medical community.

Acute reactions usually dominate the discussions on various internet forums.  The acute reaction sufferer is usually reeling from the horrific “shotgun” reaction that takes the victim by surprise.  Something akin to getting the “rug pulled out from under your feet”, the acute reaction usually has a sudden onset, is more frequently discovered than the delayed adverse reaction, and is much easier to connect to the medication, at least for the layman. Most folks who are experiencing acute reactions are in more immediate physical and psychological need, thus the reason for the prevalence of their discussions.   

Before I go any further I believe that a cautionary caveat is in order.  It is human nature for us to attempt to place ourselves into a predictable pattern of outcome.  That is why all the internet  groups are full of people trying to determine how they are going to react. “What is going to happen next?”, is one of the most common questions I get asked.  Victims turn to the “Flox Report” and listen to all types of varied opinions in an attempt to gain certainty.   The truth of the matter is that this syndrome creates absolute uncertainty.  These reactions are tailor-made for the individual according to so many physiological and external factors that it would be futile to try and list them all here.   Predicting an individual outcome is like setting a date for the end of the world.  The minute a prediction is made, this syndrome will come along and prove you wrong.   The best you can hope for is to psychologically cope with the reaction, take quality care of your body, and ride out the reaction. 

To me, in a nutshell, a true delayed reaction occurs when there is a noticeable length of time between the conclusion of the course of antibiotic therapy and the onset of the adverse symptoms. During this time the patient, for the most part, is symptom free. This interval usually ranges from at least a few weeks to as long as nine or ten months.   After that, the symptoms usually begin slowly building to a crescendo over a very extended period of time.   Many times the symptoms build on top of one another at a very agonizingly slow pace.   At times the victims may perceive what they believe is a cessation of symptoms. In most cases, these reactions are devoid of the initial horrific “shotgun” reaction that is so prevalent in an acute response.  Delayed reactions are no less agonizing than acute reactions, it is just that their symptoms are played out differently and the underlying method of action is most likely different.

I am broaching this subject for several reasons. First,  I receive many queries from individuals who are afraid that they are experiencing a delayed adverse reaction. Second, I like to keep track of other sufferers who are experiencing delayed reactions for moral support. Third, I believe these reactions are driven by a different method of action so the sharing of data about the reactions are helpful.  Now I will be the first one to admit that setting defined parameters for the “type” of reaction is tenuous at best. Again, the reason for this is as complex as a person’s physiology.  So often the lines of intensity are blurred as one reaction type (mild, intermediate, severe) borrows from another.  Although rare, there are cases where a person taking one pill has an acute reaction that goes on to develop a drawn out parade of agonizing symptoms that lasts for years after the initial acuity settles down. Yet another takes an unbelievable amount of the medication  via I.V. and pill form and only has a very mild reaction.   The reasons for these variances have to do with the highly polymorphic state of our physiology.  Although genetic predisposition can, and most likely does, play a certain role, it cannot explain away why some people do not react until their sixth or seventh time of exposure.  The latter most likely due to cumulative underlying damage.

If you are experiencing a reaction to a fluoroquinolone, do yourself a favor and please use extreme caution when excepting recovery advice.  Although well intentioned, there are many newly involved that will tell you a specific symptom timeline.  Even though it is tempting to grab a hold of such data, it can also set one up for disappointment if your recovery does not follow their pattern.   There is no one size fits all treatment program. Do however know that many individuals do, in fact, recover from this damage.

It is not fair what has befallen us. Either way, until the medical community stops handing these drugs out like candy that trend is unlikely to change. Considering the day and age that we live in, it is one of the greatest medical travesties, that is of monumental proportions, that is continually being perpetrated on innocent individuals.

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Posted By admin on October 27, 2011

Many folks suffering from Fluoroquinolone (FQ) toxicity turn to supplements to help provide their bodies with nutrients and necessary building blocks to promote healing.   One form of supplementation comes through amino acids. Amino acids are the chemical building blocks of the body that make up proteins. Protein substances make up the muscles, tendons, organs, glands, nails, and hair. Growth, repair and maintenance of all cells are dependent upon various proteins. Next to water, protein makes up the greatest portion of our body weight. There are basically two types of amino acids; first, essential amino acids that must be obtained from the diet and second, nonessential amino acids that the body can manufacture from other sources.

Amino acids are readily available in supplement form and can be found at most vitamin stores and sports houses. Amino acids are widely marketed to athletes who use them to enhance performance and promote muscle growth. Besides helping athletes, some amino acids are also good antioxidants that fight free radicals inside the body.  Many amino acids are bundled together in combinations by companies to target certain body functions such as muscle growth or intestinal support. Since amino acids are basic building blocks and are widely marketed as a natural way to provide the body with the essential building blocks it needs, surely they are safe for FQ sufferers to take, right?  Well, the answer is yes and no.

FQ’s can be toxic to the liver and some earlier versions of FQ’s were taken off of the market due to their liver toxicity profiles. Unfortunately, most FQ sufferers, at least ones that I know, have some sort of impairment to their liver as a result of the toxicity.  And many more probably have this impairment and are not aware of it or aware that it is responsible for some of the physiological responses that they experience.  The good news is that the liver has a good capability to heal and many FQ victims that have mild to moderate FQ damage seem to see faster liver healing.   For FQ sufferers, the majority of liver impairment usually comes in the form of damage to the enzymatic (cytochrome) pathways in the liver. The liver enzyme system is responsible for the biotransformation of a multitude of drugs in the body.  I will post a more in-depth article regarding liver dysfunction at a later date.

Over the years I have spoken with several FQ sufferers that, through trial and error, have determined that certain amino acids have made them feel worse or exacerbated their existing symptoms.  Some attributed this increase in negative symptoms to the fact that the supplementation with amino acids was helping the liver remove toxins from the body, but I do not believe that this is necessarily the case.   Others have told me that one amino acid will cause body pains, another will cause weakness, another will cause anxiety and some cause no reactions whatsoever.

Dr. Melissa Palmer, an expert on liver disease, says that amino acid supplementation is also potentially dangerous for people with liver disease. Although amino acids are indeed natural, it doesn’t mean that they’re always safe, especially for people with liver disease.  Now I am not implying that FQ sufferers have liver disease but I do believe that the possibility of liver pathway dysfunction caused by FQ toxicity warrants caution with the use of amino acids, or any substances for that fact. I think that, at times, some FQ sufferers assume that since amino acids are present in food, that they are benign and would not suspect them to cause problems. I have a theory that some of the reactions, not all, that folks have to certain foods may be from the amino acid content in the food, but I am not prepared to expound on that theory right now. Most of the amino acid supplements that are available over the counter come in quantities that are far greater than the amount the body needs or obtains through food sources. Consumption of excessive amounts of amino acids could cause serious side effects.

The moral of this story, like many, is one of caution.  If you are experiencing exacerbation or an increase of symptoms and are taking a supplement with an amino acid(s) you might want to research the possibility that they may be causing the problem.  Fortunately, most amino acids are readily available individually and in small amounts through various companies if you choose to experiment with any sensitivity issues.  For myself, I am slowly working through the amino acids to see which ones I respond negatively too.  I have severe digestive issues and certain amino acids like l-glutamine or l-carnosine are recommended to help heal the digestive tract lining. Unfortunately I am very sensitive to l-glutamine which exacerbates my neurological symptoms and am mildly sensitive to l-carnosine which causes weakness and some pain. To find out whether I am sensitive to an amino acid, I usually purchase a small quantity from a quality vitamin supplier and then test myself with a small amount. Just remember, a supplement that works for one may not work for another. If you have concerns about amino acids please discuss them with your trusted medical provider. Amino acids can provide essential building blocks that we need for healing but always keep a diligent eye on your supplements to make sure that they are not making you worse or causing discomfort.

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Posted By admin on April 12, 2011

Many of you may know, or maybe heard via rumor, there have been some of us in the community that have endeavored to move research regarding quinolone toxicity to new levels. I am pleased to say that there has been some exciting research initiated over the last few years in addition to in-roads being made into the medical research community. Even so, there are daunting challenges ahead of us and a tremendous amount of work to be done. Many folks that I have worked with and corresponded with realized that at some point it would be necessary to start a national non-profit organization to raise funds and direct quinolone research. I (we) believe that time is now.

Having been involved in the FQ community you must have realized by now that the impetus for change that we seek in modern medicine and research must come from within the community. This change will not come from the outside. Recent history is replete with grass root groups that have faced daunting medical issues and have overcome. The FQ community is populated by many intelligence, articulate, and motivated individuals. If we work together in common unity we can achieve the changes that we seek and end this suffering that we face.

Because of this we are announcing the beginning of a charitable non-profit foundation to fill a niche in the quinolone victim community. More specifically, the niche is to stimulate and fund university level research that will inform and educate the medical community. Our goal is not to compete or replace any existing organization, website, or social network but to work in concert with these entities to fulfill our mission to understand and minimize/reduce quinolone toxicity as a cause of human suffering in the world. Hopefully the organization will be named the ‘Quinolone Vigilance Foundation’ (QVF). We can’t say that will be the name for 100% sure (until an attorney does the necessary due diligence work and signs off on the name). We chose that name because even though thousands of individual are damaged from Fluoroquinolones, quinolones (the foundation class of drugs) in and of themselves are toxic. New drugs continue to be developed from both quinolones and fluoroquinolones. It is an unfortunate probability, that in the future we are going to continue to see folks damaged from newer antibiotics and chemotherapy drugs that are based on these drugs. Because of this, we would like the foundation be broad enough to cover those individuals also.

The current URL for the future foundation is www.saferpills.org. This URL was chosen as an easy to remember URL and not actually associated with the official name. Eventually the foundation will have other URL’s (probably some with FQ in them) as it becomes more comprehensive.

We are in the processing of negotiating a pro-bono law firm to handle the necessary incorporation paperwork and seeking non-profit status from the IRS. Even though the law firm will be providing pro-bono services we need to solicit funds seed money to cover the incorporation costs for Federal and State fees. Any seed money that we received for starting the foundation will be tax deductible retroactively once the non-profit status is achieved.

Initial board members are being selected based on their involvement in the FQ community, individual areas of expertise, and a demonstrated ability to work closely together in a humble, diplomatic, and altruistic fashion. Each board member will direct foundation activities within their areas of expertise. The board will be announced after more formal formulation has been achieved. Once the board is established, a few committees will be initiated to direct fundraising activities, oversee research, and interact with the media and community. Committees will be made up of individuals who are directly involved in the FQ community, demonstrate the ability to work closely in a respectful and altruistic manner, and are willing to commit the time and effort to achieve the goals necessary.

It is important to note that ALL individuals involved with the foundation are providing their talents on a pro-bono basis without monetary or material compensation. The foundation will be structured so that the maximum amount of funds raised can go directly to achieving the mission, mainly research, and expenses for administration will be kept to a bare minimum.

If you are interested in participating in any way, and/or want to be kept up to date on the progress, I encourage you to go to the URL www.saferpills.org and sign up for ‘Updates and News’ on the right side of the screen. You will be kept update to date on organization news, including: incorporation process, volunteer opportunities, committee opportunities, and financial needs, and general news.

Also, if you are aware of anyone who may not receive this information and may be enthusiastically interested, please share with them this post. Please, if you have any questions, comments, concerns, or offers do not hesitate to contact me.

David Melvin

“Never doubt that a small group of thoughtful, committed people can change the world. Indeed. It is the only thing that ever has.” Margaret Mead

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Tags: General Medical

Posted By admin on February 27, 2011

It has been a while since I have posted and article and I apologize for that. I am still searching for the perfect balance that allows me to work, head up FQ issues, work on the creation of a national non-profit, deal with medical issues, and get the necessary rest.   So far I have not found it.

I recently received an email from a fluoroquinolone (FQ) sufferer who asked if he could share his story with me without fearing reprisal for his opinions.  He said that after reading my writing he felt as though he could approach me with what is, in his opinion, a very controversial and taboo subject in the FQ community.  His views, which were formed, based a personal health crisis a few years ago, have left him feeling a bit ostracized. After listening to his story, I asked him if I could use it for the basis of an article.  He agreed, as long as I would change his name.

Frank, as I will call him, was your average a middle age blue collar man who worked at a local industrial factory.  One day Frank injured his arm on a piece of machinery.  Frank recalls that the injury was moderate in severity and resulted in some pretty serious scrapes and a few deep slices to his forearm.  Even though the injury was treated promptly, which included washing, disinfecting, stitches and bandaging, he developed an infection in the injury area.    At first, he thought nothing of the infection and was prescribed a course of antibiotics, but soon after things began to change.  He thought something was not quite right about his immune system.  The infection did not clear up and on top of the infection he developed what he described as cold and flu like symptoms.

Frank was given course after course of various antibiotics with the exception of the FQ’s and the infection did not improve.  As his physical state slowly weakened he was admitted to the hospital with an aggressive tissue infection in his arm.  According to Frank tests revealed that he a contracted a form of MRSA.  Within days of being admitted his health slowly deteriorated to the point where he had pneumonia and the doctors were worried that his life could be in jeopardy.  At this point, Frank’s doctor, who has been resistant to the idea of using a FQ, due to some issues with FQ resistant MRSA, decided to go ahead and try an FQ since Frank was in the ICU and was, for the most part, dying. 

Within a few days of starting the FQ, Frank’s infection began to improve.  Frank’s doctor credited the fact that evidently the strain of MRSA that Frank had contracted was still responsive to the FQ’s.  Slowly over the next few weeks Frank’s health began to improve and within a month he was back at work on a limited basis.  Within the next few months Frank’s started noticing some tendon issues in his shoulders and knees and some neurological issues. After searching the internet about the FQ’s he was obviously surprised about what he uncovered.  Although the doctor blamed Frank’s symptoms on what he described as lingering effects from the severe infection, Frank had absolutely no doubt that the symptoms he had were from the FQ IV he received.

It has been a little over two years since Frank’s infection and he describes his reaction to the FQ as an ongoing intermediate reaction.  In his words the reaction is “chronic but not debilitating.”  Frank has read the horror stories suffered by many victims of the FQs.   Although, Frank himself is damaged from the FQ he received, he also is the delicate position of being convinced that the same FQ saved his life.   Because of this, Frank desires for the removal of FQ’s from everyday use and wants them to be used in a hospital setting for life and death infections, where the collateral damage maybe more acceptable (benefit vs. risk). 

Over the last few years Frank has made several attempts to relate his opinion to some members of the FQ community only to get replies that ranged from slight rebuffs to outright hostile criticism.  In one setting he was accused of being a pharmaceutical shill.  Frank realizes that those permanently disabled by these drugs, especially those whose doctors used them for routine, non life threatening, infections, have an understandable rage but he hopes some common ground could be reached.  Frank believes that by focusing on common goals as opposed to our differences we can get something accomplished as an FQ community.  When I asked him what he thought some of those goals should be, he stated “more black box warnings for neurological reactions, education of medical professionals, and require doctors to discuss and sign off with patients about the adverse reactions.”  These are a good start, he said.   

My conversation with Frank brought me back to my own internal psychological struggles about what constitutes acceptable use of these drugs, if any.  If Frank approached you, what would your response to him be?

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Posted By admin on January 28, 2011

Some new internet sites have popped up lately. Please visit or join these sites to help them grow and raise awareness.

New Google Support Group:Quinsupport Google Group

Thank you.

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Posted By admin on December 8, 2010

One of the many activities curtailed by having an adverse reaction to fluoroquinolone is physical exercise.  Whether you were an athlete prior to your FQ ADR or you were a sedentary individual, exercise can play an important role in your post floxed life, enhancing it and helping the body with the healing process.

I am not going to extol the general virtues of exercise since by now everyone should know that exercise benefits the body in many different ways and information on this subject is easily researched.  I will however extol the virtues of exercise for the floxed individual. 

After our reactions, many FQ sufferers become quite health conscious. Paying attention to drugs that are taken, foods that are consumed, and working hard on keeping what we have left of our bodies in good working order. Regardless of the type of FQ reaction that you have, you are going to have collateral damage. The amount of collateral damage obviously varies from victim to victim depending on numerous factors.   However, for most FQ sufferers there comes a point in their reaction timeline when they choose to start integrating a physical exercise regimen into their road back.  I think that there are numerous reasons why we, as FQ sufferers, should start exercising when we are physically capable.  In the next few paragraphs I will elaborate on a few areas where I think exercise benefits the FQ sufferer in particular.

Exercise has numerous positive effects on cognitive function and neurological function.  Most FQ sufferers have at least some neurological damage that can manifest itself in numerous different ways.  Exercise has been shown to improve cognitive function by helping the hippocampus in the brain and improve synaptic responses.  It does this by increasing cell proliferation or turnover rate of nerve cells by increasing growth factors that create new nerve cells. Exercise also increases blood flow through the brain which increases the amount of oxygen the brain receives. 

Moderate exercise helps the immune system. Studies have shown that moderate exercise can reduce the amount of upper respiratory infections and reduce bodily inflammation. In addition, Exercise can help regulate adrenal output by helping reduce the level of cortisol buildup in the body.  Excess cortisol can lead to numerous health problems.  One problem faced by some FQ sufferers is adrenal gland malfunction.

Three questions that are often asked after one suffers from an ADR to the fluoroquinolones are: when do I start exercising, what type of exercises do I do, and how often?  When, is obviously a hard question to answer.   Two years into my reaction my joints still felt like they were held together by rubber bands and that too much exertion would cause damage.  It was not until I was at 32 months out that I decided to begin an exercise regimen.  For each sufferer, the answer to “when” question differs according to their reaction.  I know some floxies that were exercising three months after their reaction (obviously not a very severe reaction physically) and I know some who have not started five years after their reaction.  This decision is such a personal one and must be left to the individual and how they feel.  I believe that rushing to exercise too soon can cause severe damage.

 What type of exercise to do is also a hard question to answer but there is some helpful information garnered from other floxies who have started an exercise program.  Most FQ sufferers cannot tolerate impact exercise for quite some time, if ever, after their reaction.  I was very physically fit prior to my reaction and now almost three and a half years out I cannot tolerate any impact exercise whatsoever, that includes even walking for very far.  What I can tolerate is a no impact adjustable resistance exercise.  My exercise of choice is stationary bicycling. I purchased a very nice recumbent exercise bike with adjustable resistance that can be changed while bicycling and a built in cardio monitor.  I am able to adjust the resistance depending on how my legs feel that day and give myself a good aerobic workout.
The exercise bike allows me to work my ankle, knee and hip joints and well as the muscles associated with these joints. To benefit the rest of my body I do light resistance exercises to my arms and shoulder joints.  These consist of pulling, pushing, lifting, and curl exercises while a helper puts variable light pressure on the joints.   I can direct the helper to put more or less pressure on the joints depending on how they feel.  One final exercise I do is some mild sit-ups to keep the back limber.

Some floxies prefer to exercise in the swimming pool, and this can be very beneficial especially if it is a heated pool.  I have however had some floxies say that swimming still puts too much resistance on knee and shoulder joints.

Talking about exercising for floxies would not be complete without talking about pain.  I never realized the body could experience so many different kinds of pains at so many different levels.  Early on in my reaction deciphering the different pains was very hard to do.   Only after time did I learn what pains to pay attention to and what pains to ignore.  I had to learn that the “headache” like pains that I get in my joints, were not serious, and did not affect my exercises at all.  Then there are the phantom pains of neuropathy that come and go and with me are completely unrelated to exertion. If I get sharper pains in the tendons, I know that I have to back off the exercise and cool the tendon down.   I do this by putting an ice pack on the offending tendon after exercise. On an important note, exercise for the most part lowers my overall pain levels.  On average if I am not able to exercise for three days or more, my pain levels in usually increase.

This leads to me to the question of “how often?” In my life pre-floxing I would do intense aerobics every day, I now find that it takes me much longer to recoup even from moderate to mild exercise.  Because of this I prefer to exercise every other day and sometimes two days between sessions if I am not feeling up to it or I over did it.

One final note and that is what I call the paradoxical effect of insomnia.  Several floxies that I have talked to about exercise have reported that exercise sessions can worsen insomnia.  I have found this to be true in my case.  I speculate that this is caused by adrenal malfunction but I do not know for sure.  I have found that I can lessen the impact on insomnia if I exercise early in the day and consciously try to keep stress levels that day to a minimum and avoid too much sugar intake.  Overall, I believe that the benefits of exercise outweigh the negatives.

Category: Exercise, General Medical | 5 Comments »
Tags: Exercise, General Medical

Posted By admin on October 29, 2010

Many of those who are dealing with fluoroquinolone reactions debate on whether to treat their reaction by conventional means or by alternative means.   This debate has raged on and at many times has divided individuals as they staunchly defend what they believe is the correct way.  In this article I would like to look at this argument with neutral bias and see if there is any common ground that can be reached.

This argument is not new to the medical community.  Over the years many individuals suffering from a multitude of maladies have sought out alternative methods of treatment especially when they believe conventional medicine has failed them or their condition is beyond the cure of modern traditional medicine.   Conversely there are those who look upon alternative forms of treatment as nothing more than dangerous chicanery or quackery that is used by charlatans to prey upon desperate people.  As with any argument of this type there is usually truth in both camps and equal evils in both camps also.  History is replete with those who prey on unsuspecting desperate people offering treatment options that do more harm than good.

Recently, while reading through the myriad of postings on the internet regarding fluoroquinolone reactions, one person stated that they were unwilling to discuss any treatment options that were not confined to the boundaries of traditional medicine.  I had to laugh when I heard this statement.  Although I completely understand the viewpoint and respect it, I could not help but thinking that it was traditional medicine that caused the problems with fluoroquinolones in the first place.  Alternative medicine is not to blame for this debacle.  Yet, even with this in mind there are those who vilify those who choose to seek alternative forms of treatment.  How ironic.

I understand why alternative medicine is viewed with trepidation.  Many claims made by alternative practitioners are not accepted because the safety and efficacy of these treatments have not been proven.  I do agree with this viewpoint. There are many times that unsuspecting people have been hurt or killed because the alternative treatment that they chose had not been proven safe.   However judging safety by comparing it to traditional medicine is not as clear cut as it seems. Adverse drug reactions inflict serious injury to more than 2 million people in the United States each year, including more than 100,000 fatalities. In fact, adverse drug reactions are one of the leading causes of death in the United States. After all, I was told by my urologist that the fluoroquinolone that I took was safe and well tolerated.   The doctor believed, and probably still does, that the fluoroquinolones have a pristine safety record; a pristine safety record that was derived using evidence-based assessment methods, obviously directed and funded by the drug companies. 

What drives people to alternative medicine?  Well besides the aforementioned examples there are probably a myriad of other reasons but one that I think is the most apropos lies within human nature itself.  Humans do not like to sit idly by and do nothing.  More often than not when a newbie enters the FQ world they are often told there is nothing that they can do for their reaction but just let time take its course.  Most people, at least the ones that I know, do not like this advice.  The complete lack of control can be psychologically unnerving and therefore drive a person to seek alternate paths to wellness.   So is to give up, really the answer?
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Category: General, Philosophical, Psychological | 3 Comments »
Tags: General Medical, Philosophical, Psychological