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 article research I recommend the Fluoroquinolone Toxicity Research Foundation.   There are three  discussion forums available for FQ damage on Yahoo Groups: Fluoroquinolone Toxicity , Surviving the fluoroquinolones, and Fluoroquinolone Adverse Reactions .   For 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 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.

Category: Doctors, General, General Medical, Philosophical, Psychological | 1 Comment »
Tags: General Medical, Philosophical, Psychological

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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Tags: Amino Acids, General Medical

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

Category: FQ Community News | No Comments »
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?
(more…)

Category: General, Philosophical, Psychological | 3 Comments »
Tags: General Medical, Philosophical, Psychological

Posted By admin on October 5, 2010

Every fluoroquinolone (FQ) victim generally goes through the same plight once their ordeal begins; recognition.  Each one of us has a story.  Although the details may be different the overall theme is the same: The medical community denies that these drugs can do the damage that they do, despite documentation to the contrary.  To compound the matter, often the victim not only finds themselves fighting the medical community, they also find themselves fighting against resistance from family, friends, co-workers, and the general public.

New FQ victims are often shocked when they come to the realization that in this day and age, with our supposed advanced medical technology and scientific open mindedness; they have fallen out of reach of the medical community and are basically on their own.  They are now engaged in a battle for survival on a battlefront that they never knew existed.  Because of this we relish in hard won victories no matter how small.

As we become veterans in the FQ battle, we become very knowledgeable and in some ways we become more knowledgeable than the medical community.  So, when we convince someone within the medical community that the threat of the FQ’s are real, that the damages are real and that the suffering is real, we have won a small victory.

I have had a few small victories in my battle, and the most recent was one that was the most memorable.  Although, I have convinced a few doctors within the last few years about the dangers of FQ’s and the reality of the plight of their victims, a recent visit a local neurologist was very poignant. This neurologist had seen me for some time and was unable to deliver a definitive diagnosis. I presented a plausible cause for my symptoms and after some challenging questions from the neurologist, that I would not have been able to answer early on in my battle, the neurologist wrote ‘quinolone neuropathy’ on my chart.

Why are these small victories important?  Besides bolstering our attitude, the recognition is important if we are ever to turn the tide of battle in our favor.  Some day there will be enough believers within the medical community that the research and treatment that currently eludes us will be a distinct possibility.  I know some would say that this is a pipe dream, because the enemy is much more powerful, well entrenched, well financed, and suffers from scientism.   But we must continue to fight if only for the reason that it is the right thing to do. 

I have recently had a small defeat in my struggle.  During a recent visit to the University of Chicago I had an appointment with an associate professor of neurology.  My hopes were high for a positive outcome because this was a teaching hospital and I hoped for an open minded atmosphere where outside the box thinking would be fostered. I was wrong. During my appointment and after a failure of two doctors to pronounce a definitive diagnosis, I presented what I thought was my plausible explanation for my symptoms.  The senior doctor present looked at me and said that “neuropathy was not the type of damage that fluoroquinolones could do to the body, only tendon issues.”  My response was, “I have documentation here that shows that FQ’s can cause peripheral neuropathy.” The doctor replied “not any documentation that I have read.”  The doctor was not willing to look into any information that I could offer as a possible cause of my condition.  Also, she almost seemed angry, that I, a simple patient, could offer a theory on oxidative stress and programmed cell death, known as apoptosis. What I find extremely ironic is that doctors rely heavily on the patient’s opinion of what their symptoms are but totally dismiss the patient’s opinion as to the cause of the symptoms.  Obviously, it was time to shake the dust off of my feet and move on.  Entrenched ideas with tunnel vision are hard to overcome.  It is scientism in its most poignant example.

Do I get disappointed when these small defeats?  Sure I do.  Just like everyone one else.  However, what is important is that you pick yourself back up and get going again.   Use your small defeats to give you the drive to educate yourself more, hone your approach, and presentation.  Eventually you will have a small victory, or maybe a major victory.  Who knows maybe your victory will be the one that turns the tide for the entire FQ community.

Category: Doctors, General, Philosophical | No Comments »
Tags: Doctors, Philosophical, Psychological

Posted By admin on June 20, 2010

Insomnia

This is the first in a two-part series on Insomnia.

Insomnia is a constant bedfellow for the FQ victim.  As a matter of fact, I have found very few FQ victims that have not suffered from insomnia, in one form or another, at least at one point in their timeline.  Insomnia hits us in various forms, whether it is the total inability to sleep, light sleep where you wake up quickly and don’t really get good rest, or you fall asleep easily only to wake up way to soon. Some sufferers also report severe night terrors similar to nighttime panic attacks that occur while falling asleep or shortly thereafter. Although there is no magic bullet for the cure to insomnia brought about by FQ toxicity, there are some tips and suggestions that can help us try and cope with this unwelcome visitor in the night.

Our battle with insomnia is as much a psychological battle as it is damage that has been done by the fluoroquinolones.  Don’t get me wrong, I acknowledge and believe real damage has been done to our nervous system that results in the insomnia.  I also know, as psychological creatures, we can allow this unwelcome visitor more power than it actually deserves, thereby making our battle with insomnia an even greater one. 

First let’s deal with insomnia and its psychological implications. When, as FQ sufferers, we first get hit with the insomnia it can be very disturbing to our psyche.  I have heard sufferers liken the insomnia experienced from FQ damage to ingesting some heavy duty stimulants.  For many, even if they can fall asleep, the sleep can be so light that one FQ sufferer wrote, “I could hear a cat walking across a carpeted floor while asleep.”   This is very apropos. It can be quite disturbing not wanting to sleep or even have the ability to sleep for days at a time. But this is where we must not make our first mistake; to become fearful of the inability to sleep.  I do not like it, and I expect you do not like it either, but we must  accept that it is part of the FQ damage and in time it will pass.  So basically, flow with it and let what happens, happen. And that brings me to the second mistake we must not make; to get angry and fight against the insomnia when it happens.  Again, let it flow and let what happens, happen.  Do not become fearful, or angry, or upset because you can’t go to sleep.  By doing so, we can make matters worse and create a condition where we train ourselves to become insomniacs.  Yes, even when the FQ damage starts to clear, and the ability to sleep returns, which it will do, we can have trained ourselves to stay awake, and we don’t want that.   So please, be kind to yourself and remember that this is for a season and eventually will pass. 

Now there comes a time when the FQ sufferer may want to try something to help induce sleep during the rough spots. I do not advocate any particular treatment option because whether to use a sleep agent or not is an individual decision.  This is a point of great controversy amongst FQ sufferers; whether to take a sleep inducer because many feel that this can hamper your recovery.  Although to this date I have never found a basis for this fear, some individuals have chosen to remain as drug free as possible in this realm and I can respect that.   However there are some victims that have determined that their level of suffering, such as nighttime panic attacks or not being able to sleep for days requires something to help them through these rough times.   As far has help goes, we have several options at our disposal and they are relaxation (cognitive) therapy, herbs, supplements, and medications.    I will discuss these options briefly and at the end of the second part of this article I will list some helpful tips shared to me by other FQ sufferers.  Remember to discuss any choices that you make with your trusted medical professional.

Relaxation therapy is a viable cognitive way to counter the stress associated with FQ toxicity and when practiced regularly can counter daily stress responses. This reduces the likelihood that stress hormones will be elevated at night. When practiced at bedtime, relaxation response helps turn off negative sleep thoughts, quiet the mind, and relax the body. This type of therapy elicits a brain-wave pattern similar to stage one sleep, which is the transition state between waking and sleeping. Thus, by practicing relaxation therapy at bedtime, it is easier to enter stage one sleep, then hopefully onto stage 2. Anyone can learn these techniques on their own very easily or, if they so choose can be taught and guided through relaxation therapy by a psychologist. I taught myself relaxation therapy by using The Relaxation & Stress Reduction Workbook. Now in its sixth edition, this workbook, highly regarded by therapists and their clients, and remains the go-to source for stress reduction strategies that can be easily self taught and practiced with success. Although the relaxation by itself may not cure insomnia, it has a significant positive effect on sleep for most insomniacs.

There are many vitamins and supplements that can be beneficial to make sure that you are getting a good nights rest.  Although these items may not cure you insomnia, the lack of the right vitamin or mineral can exacerbate sleep problems.  Calcium and magnesium are necessary for the proper functioning of the nervous system.  A calcium deficiency can cause restlessness and wakefulness that will prevent proper rest.  A magnesium deficiency can also cause nervousness, plus many other hosts of symptoms and may be play a vital role in FQ toxicity, but that is for a later article.  When calcium and magnesium are taken in the appropriate ratio they produce calming effects and on the brain and are essential for a good night sleep. Vitamin B12 deficiency can cause a host of neurological issues including affecting a good night’s sleep. Adequate B12 levels usually promote a calming effect on the nerves.  It is important to note that some FQ sufferers have reported that B12 actually exacerbates their symptoms causing an almost paradoxical effect, so caution is in order. It is important the B12 is taken in appropriate balance with other B vitamins.  The supplement Melatonin, which is actually a sleep hormone, is purported to be able induce sleep without any negative side effects. It is important to note that Melatonin has been shown to only help those that are deficient in Melatonin and many FQ sufferers have reported mixed results. The supplement 5- HTP, a form of tryptophan, has been shown to be an effective alternative for dealing with sleep problems in a safe and natural way compared to sleep medicines.  5-HTP can have interaction problems with certain antidepressant medicines since it affects the serotonin levels.  Information on these supplements can be found by clicking here.

In the second part of this article, I will discuss herbs, medications, and helpful tips.

Category: General Medical, Insomnia, Psychological | 1 Comment »
Tags: General Medical, Insmonia, Psychological

Posted By admin on May 15, 2010

I was reading an article by CNN Medical News correspondent Elizabeth Cohen about a so called “Obnoxious Patient” that was “fired” by his doctor.  In the article Dr. David Golden says he had to fire a patient for being obnoxious because the patient would not stop questioning him about the possible side effects of a medication that he, the doctor, was going to prescribe.  The doctor stated that the patient was not open to discussing anything.

While reading the article I had to start laughing.  I do not know if that was appropriate response or not but the irony of the article struck home with me, as it would strike home with any of us in the fluoroquinolone victim community. Dr. Golden says he’s all for empowered and educated patients, but some patients have become so empowered, they’re actually putting their care in jeopardy. I had to ask myself what would have happened if I would have questioned my doctor about the fluoroquinolone he prescribed me.  Well, actually I did and he assured me that the drug was safe and well tolerated.  Maybe I should have questioned even more. In hindsight, I would have gladly been fired by him as opposed to get the medicine that basically changed my life forever.  Who knows maybe Dr. Golden did his patient a favor. 

I do not know how many FQ sufferers have told me that their doctors are not open to discussing the possibility that the FQ is the cause of their damage. Many FQ sufferers have also related to me that their doctor’s responses ranged from polite dismissal, to outright hostility, and some doctors had the gall to actually diagnose the FQ victim with suffering from a mental illness when they try to link the symptoms with a fluoroquinolone antibiotic. These are all from individuals who presented their information in a very civil, non-obnoxious manner. Most people with chronic illnesses, and almost all people in the FQ victim community, find it ironic that doctors, whose profession is suppose to be open to continual learning, are actually so closed minded.  Unfortunately this sad behavior has been around for a very long time.

This plight of facing a closed-mindedness that is disguised as open-mindedness is nothing new. Laura Hillenbrand, author of the famous book “Seabiscuit: An American Legend”, was diagnosed with Chronic Fatigue Syndrome many years ago.  Before her diagnosis she had to endure all kinds of humiliation by physicians who, out of ignorance, would not listen to her.  Laura Hillenbrand wrote “The doctor I found waved me into a chair and began asking questions and making notes, pausing to rake his fingers through a hedge of dark hair that drifted onto his brow. He ran some tests and found nothing amiss. He told me to take antacids. A few weeks later, when I returned and told him that I was getting worse, he sat me down. My problem, he said gravely, was not in my body but in my mind; the test results proved it. He told me to see a psychiatrist.”  When she was seen by a psychiatrist that found her mentally fit, her doctor told her to go see another psychiatrist.

Now, I don’t want anyone reading this article thinking that I am advocating that they become obnoxious with their doctor.  I do however support that you strongly advocate for yourself.  With the dawn of the internet, information that was once only readily available in the realm of the medical professional is now readily available to the general public.  Information that once took a long time to accumulate and analyze, can be reviewed and accessed with lightning speed. This can intimidating to some doctors.

 Conversely, you must remember that doctors must first approach each new patient on a level playing field.  They basically have to start at square one.  However a good doctor, once he/she has established that you are an articulate, intelligent patient should use your knowledge about your own health combined with their medical knowledge in a synthesis to formulate a treatment plan if possible. In a past article I wrote about what I coined as the “The Semmelweis Effect.”  The Semmelweis Effect takes place when a credible, articulate, intelligence patient presents a plausible mechanism for their medical problem, and in the absence of any irrefutable diagnosis is dismissed by their medical professional.  If this occurs it is time for you to do the firing. It is a shame in American today, that the patient knows more about a medical condition than the doctor.  If that makes me obnoxious, then label me “guilty as charged!”, but forgive me if I don’t sit idly by while the doctor dismisses the information that I present to him/her.

We in the FQ community are a unique breed.  We are clearly suffering from something that is not yet acknowledged by the main stream medical community although overwhelming documentation and anecdotal evidence exists.  I have written about this before in several articles and will probably continue to write about it until we as a community get the attention of the medical community. But please do not lose hope.  I believe a day will come when we will see vindication!

Category: Doctors, General, General Medical, Philosophical, Psychological | No Comments »
Tags: Doctors, General Medical, Philosophical, Psychological