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 have horrific side effects that can disable the most healthy of individuals creating permanent long lasting injuries.  These reactions are considered statistically insignificant by drug companies and the FDA. The victims sometimes do not know what has befallen them, not suspecting that these drugs could be the cause.  Compounding the problem, the medical community is woefully ignorant to their side effects and the permanent damages making the suffering endured by these drugs greatly increased.

Although there is 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.  If you want to do some in depth research I recomend the Fluoroquinolone Toxicity Research Foundation. It is the definitve scientific  site for fluoroquinolone toxicity.  I am in no way affilliated with that site but recommend it for research. There are two active discussion forums available for FQ damage on the internet they are the Fluoroquinolone Antibiotic Victim Community Forum and the Fluoroquinolone Toxicity Yahoo Group.

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Posted By admin on February 26, 2010

I was getting ready to post an article on insomnia, which will be forthcoming shortly, when I got sidetracked by watching a portion of congressional hearings focusing on the automaker Toyota. Anyone who has been watching the news lately has to have heard by now that Toyota is in the cross hairs of congressional hearings in Washington, D.C.  Toyota has come under public scrutiny due to alleged defects in some of their automotive models.  Toyota is recalling millions of autos in hopes to correct possible acceleration defects that, according to the latest facts I could find, have been linked to a possible 275 crashes and 18 deaths over the past 11 years.  I agree that these deaths are tragic and warrant the company to investigate and correct and malfunctions, but let is put this in perspective with our fluoroquinolone plight.

According to Medwatch, the adverse drug reporting arm of the FDA, the following statistics are available on fluoroquinolone antibiotics, from a period from 1997 to 2007: Levaquin 39,128 adverse drug reactions (ADR’S) and 808 deaths, Floxin 13,495 ADR’s and 311 deaths, Cipro 40,395 ADR’s and 837 deaths, Avelox 30,160 ADR’s and 337 deaths, and Proquin 40,151 ADR’s and 831 deaths.  For this list of FQs, and it is not a total inclusive list, the total adverse drugs reactions are 163,329 with deaths totaling 3,124. According to the FDA, reports to Medwatch only represent between 1% and 10% of the actual numbers of occurrence.  Why?  The FDA states that most people have never heard of the Medwatch program and a lot of doctors are not inclined to waste their valuable time in reporting adverse drug reactions or telling patients about it.  Looking at the facts from the FDA’s own admission, deaths from FQ’s could easily total over 30,000, based on if only 10% of the actual occurrences have been reported.

Now humor me for a minute as my logical mind kicks in.  Toyota recalls millions of cars and has to appear before congressional hearings because of the possibility that a defect cause 275 crashes and 18 deaths over 11 years, and the fluoroquinolones antibiotics have caused, at the very least, 163,329 ADR’s and 3,124 deaths, and no hearings, no outcry, no acknowledgement from the medical community? Why?  These drugs have caused untold suffering to thousands and could possibly be implicated in the cause or exacerbation of many other health disorders, which is a topic for another article.

Now one may try to argue back that hundreds of thousands of prescriptions have been given out for fluoroquinolones and they have an excellent safety record.  Compared to what?  Millions of Toyota’s have been sold and now have come under scrutiny for 275 crashes and 18 deaths.  Don’t you think that 3,124 deaths (when the actual figure could be as much as 30,000) warrant more scrutiny? What will it take to get stronger wording and cautions for other damages other than tendon injuries? Patients need to be informed that the use of these drugs for other than life saving necessity can results in a host of severe reactions, which can cripple for an extended period.

In American today it is unfathomable to me that a group of people so large, can fall into a hole, and, despite the evidence, their pleas for help go unheeded.  I know that many in FQ community have tried for years to get the attention of the medical community and law makers.  Despite failures, we must continue to fight, anyway we can, and build upon the small successes to overcome the resistance.

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Posted By admin on February 18, 2010

Hallmark worries of those who are suffering from fluoroquinolone reactions are; am I ever going to get better? And how bad is my reaction going to be?  Coupled with this, is the constant struggle of trying to maintain a positive attitude, in the face of what seems to be an overwhelming negative situation.  I have to admit, there are times that I feel overwhelmed at what has beset us and I am in need of hope and inspiration.

Enter Chuck.  Chuck was given a six week course of therapy with Levaquin in April of 2002 for a case of prostatitis.   While taking Levaquin, Chuck also concurrently took a non-steroidal anti-inflammatory.  After Chuck finished his prescribed course of antibiotics he started down a downhill path that by September of 2002 left him acutely affected with FQ toxicity syndrome.   Chuck was afflicted with all the telltale ADR’s, including, wide spread joint pain and muscle pain, terrible vision problems, including visual nerve palsy and double vision, neurological problems that included various skin sensations, severe shooting and stabbing pain, coupled with fear, anxiety, depression and severe insomnia.

Chuck, totally ignorant to what was happening to him, turned to the internet for help.  He found information that helped him start piecing together what was happening to him.  As Chuck’s ADRs got worse and worse he turned back to the medical community for help.  He had test after test that routinely showed inconclusive results. Chuck related that most doctors thought he was crazy when he mentioned to them that the fluoroquinolone Levaquin might be the cause of his problems, although they never offered any other pathology for his symptoms.

Chuck had enough.  Knowing that he was not going to be able to count on the medical establishment for help, he developed his own treatment plan.  He knew the road ahead was going to be very long, difficult, and full of ups and downs but he was determined to get his life back. For the first year after his symptoms began Chuck took an SSRI to help ease the overall symptoms of the nervous system.  Chuck could barely walk and when he did he would hurt all over the next day.  Instead of fighting against his new limits he decided to work in harmony with them in order to start his healing.  Little by little he started with the most basic Yoga stretches and did only very lite Yoga stretching for over a year.  The Yoga stretches helped his joints remain limber despite the daily stiffness and pain he felt.  When he was able to, he would hold the stretches for a longer period of time. Chuck would couple his Yoga stretching with times of meditation where he would quiet his mind and combat the anxiety, depression, and fear that would try to intrude into his life.  He would meditate for twenty minutes twice a day.

After some time Chuck started an exercise routine again.  At first, he would walk very short distances, or until his body told him to stop.  Then he would recuperate a day or so.  He eventually moved onto a recumbent exercise bike where he could lightly work his legs without straining them.  After a while, Chuck started incorporating light weights into his exercise routine.  There were times, especially when starting the use of weights, where he had to rest several days, to a week or more, before doing more.  Chuck said that the bodily intolerance to exercise, which at first was very severe, lasted for years and he would be stopped occasionally with bouts of tendonitis, especially early on.

Looking back Chuck said it is hard to recall when improvement began as he recalled cycling back and forth for years. He would slowly get a bit better, and then the symptoms would return, then recede, then get better again, then cycling again, over and over.  

Chuck shared with me that he found a discussion group about fluoroquinolones early on.  At first he found the group dynamic helpful and found comfort with fellow sufferers, but after a while, he felt some of the negativity was contributing to his anxiety, cycling, and robbing him of hope.   So Chuck made the decision to stop visiting the site, to avoid the contagious negativity, and turned his focus onto healing and recovery.

How is Chuck today? He describes himself as not as strong and capable as he was before floxing , but he can generally work out every other day, walk every day, and keep the bouts of tendonitis to a minimum. He still has flare ups from time to time with tendonitis, and he has permanent damage to one eye, but overall he is thankful for his recovery, considering he remembers the darkness in the beginning when he was wondering whether he would end up in a wheelchair or worse. 

What is the morrow of this story?  We need to know that recovery from fluoroquinolone toxicity is possible, if not very likely, even for the seriously impacted.  Whatever plan you choose for your recovery you must remember that a big part of that recovery is hope.  Hope should not be looked at as something that optional but instead should be looked upon as something required.  It is a necessary, integral, piece to your recovery, and without it your recovery can be greatly lowed down or delayed.  Are you lacking hope?  Do what it takes today to turn your despair into hope.

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Posted By admin on February 7, 2010

I was speaking with a fellow FQ sufferer the other day when the idea for this article was born.  We were discussing the frustration that every FQ sufferer encounters when trying to get a doctor to listen to us, to believe in the credibility of our claims, and to treat us like we actually know what we are talking about. Yes, I know, I have written about this very subject before in previous articles like “Falling into a Hole” and “Connecting the Dots”, but I believe that this is a subject that will continue to need discussion until we get the attention of the medical community.

Ignaz Philipp Semmelweis was a Hungarian physician who discovered by 1847 that the incidence of disease could be drastically cut by the use of hand disinfection or washing.  Semmelweis discovered that a common sickness that was prevalent in mid-19th-century hospitals and often fatal, with mortality rate of 10%–35%, could be prevented by simple hand washing. As a matter of fact Semmelweis proved and published in various publications results where hand-washing reduced the mortality rate below 1%.  Semmelweis discovered this well before Luis Louis Pasteur confirmed the germ theory.

So, since Semmelweis was a physician and discovered something that was obvious, easily proven, and could clearly save lives, his ideas were welcomed among the medical establishment of the day, right?  Wrong. Semmelweis’s observations conflicted with the established scientific and medical opinions of the time. Semmelweis’s main finding, that all instances of a certain disease could be traced back to only one single cause: lack of cleanliness, was simply unacceptable to his colleagues. His findings also ran against the conventional wisdom of the day and contrary to all established medical understanding that diseases spread by other mechanisms. As a result, his ideas were rejected by the medical community. Some fellow doctors were offended at the suggestion that they should wash their hands; they felt that their social status as gentlemen was inconsistent with the idea that their hands could be unclean.  Specifically, Semmelweis’s claims were thought to lack scientific basis, since he could offer no acceptable explanation for his findings. Not until decades later, when the germ theory of disease was developed by Louis Pasteur, Joseph Lister, and others, did Semmelweis’s discoveries prove to be totally correct. Semmelweis is now recognized as a pioneer of antiseptic policy

All patients, especially those with a chronic medical condition, have trouble from time to time getting their doctor to listen to them.  Mind you, this is from patients who have known medical maladies. Now couple this with malady that the medical establishment is woefully ignorant about, or denies exists, and you have what the typical FQ victim suffers from. They suffer from, what I call, the “Semmelweis effect.” 

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.  All FQ victims have either experienced the Semmelweis effect themselves or have known another sufferer that has experienced it.  It is common place, especially at the facilities such as Mayo clinic where opened mindedness for medical research is suppose to be a hallmark.  I have personally spoke to several FQ sufferers, who gone to the Mayo clinic, whose motto “The needs of the patient comes first”, only to have  their theory on FQ toxicity rejected;  Despite the fact that Mayo clinic cannot come up with any definitive diagnosis on their own.

So there we have it, just like Ignaz Semmelwies, our pleas to look at the evidence are basically ignored and dismissed by the medical community, while decent people, undeserving their fate, suffer.  So the next time a doctor looks at you, like you have three heads, ask him “Do you know who Ignaz Semmelwies was?”

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Posted By admin on February 4, 2010

I will occasionally get an email from a new FQ sufferer, and sometimes a more veteran sufferer that reflects the utter despair that has over taken their lives as a result of the FQ damage. I have not been immune to this reality also, as have many; if not all of those who have had FQ damage. There are times when we are taken to the depths of despair as a result of the absolute uncertainty that goes along with our plight.  Being down, or depressed, as a result of what has happen to us is a normal part of the emotional process.  But what happens when the despair takes on an utterly dark tone, one that we are almost afraid to look at.  This subject is not broached very much in the FQ community.  I would like to take look at this entity that Winston Churchill call the “black dog” that has a tendency to hit us in during dark night of our soul.

To understand our depression we need to take a look at where it comes from. It is definitely not hard to make a correlation between the chronic nature of FQ damage and depression.  FQ damage can cause tremendous changes in our lifestyles that limit our mobility and independence.  These changes may make it impossible to pursue the activities that we once enjoyed or to pursue activities that we have not yet had a chance to do but would like to.  This, in turn, undermines our self confidence and robs of us our sense of hope in the future.  When depression arises from these limitations placed upon us it is usually identified as external, or exogenous, depression. This is sometimes called situational depression.

Another type of depression that the FQ sufferer can face is internal, or endogenous, depression.  Commonly coupled with anxiety, this depression comes on us as a result of the internal changes caused by the FQ toxicity.  This depression can strike us “out of the blue”.  It literally comes from the inside out regardless of our situation and can strike even if we are happy. 

Our depression, whether external or internal, is caused by chronic condition that has many other physical facets to it.  When we experience depression it often aggravates other issues we face like pain and fatigue.  Depression has a tendency to intensify pain, as well as fatigue and sluggishness.   Because of this, it can cause the FQ sufferer to isolate themselves, which in turn is likely to exacerbate the depression.  It can create a vicious cycle which in turn can interfere with the healing process.

All chronic illness sufferers can suffer from depression.  Depression can rank high among those who suffer from illnesses such as Multiple Sclerosis or Chronic Pain Syndrome so it is not unusual for FQ sufferers to suffer from it also.  What adds insult to injury and causes greater despair is for the FQ sufferer is the fact that there are no treatment options available and most doctors do not even acknowledge the condition.

So, when should FQ sufferer seek treatment for depression?  The answer is when we become depressed about being depressed.  Make sense?  Feeling down is normal and happens to all, but when it crosses over into the realm when we feel all hope is lost and we cannot cope, then we should seek help. To fear depression gives it undue power that it should not have in our life.  Instead, it needs to be treated as any other symptom that arises.  And, by recognizing and treating depression early, we can greatly improve our overall medical condition by re-instilling hope and in turn creating a better quality of life and a greater likelihood of sticking to a treatment plan.

There are many treatment options that are available that can be discussed with your medical professional.  In some cases medication may be necessary to help you through a tough time.   If your doctor has recommended medication for your condition, educate yourself about the medication and discuss any concerns with your doctor. As a FQ sufferer you may wish to take a minimal medicinal approach, psychotherapy offers a very viable option.  A competent psychotherapist can help you get through the rough times in many ways, of which can be to indentify and change inappropriate thought patterns and teach various forms of relaxation therapy appropriate for your situation.  Also psychotherapy should not be viewed with the stigma that it used to be and should be viewed as a facet in your total wellness program.

Here are some tips to help cope:

• Try not to isolate yourself. Reach out to family and friends. If you don’t have a solid support system, take steps to build one. Connect with other FQ sufferers that understand your unique plight through online support groups.
• Learn as much as you can about your condition. Knowledge is power when it comes to getting the best treatment available, and maintaining a sense of autonomy and control.
• Avoid those that are overtly pessimistic and associate with those that offer hope and positive reinforcement. Look for positive role models in the FQ community.
• Develop medical support from experts you trust, and can talk to openly about your ongoing questions and concerns.  This can be difficult for FQ sufferers but not entirely impossible.
• If you are in chronic pain, talk with your physician about alternative pain management.
• As much as is possible, remain engaged in the activities you enjoy. Doing so will keep you connected, as well as boosting your self-confidence and sense of community.
• If you become depressed, don’t wait too long before seeking help. Find a therapist or counselor whom you trust.

Living with FQ toxicity is a tremendous challenge, and periods of grief and sadness are to be expected as you come to grips with your condition and its implications, but keeping a positive attitude and, maintaining hope can help you create a better quality of life and improve your medical condition.

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Posted By admin on January 21, 2010

The positive thing about fluoroquinolone (FQ) web groups, whether they are email lists, forums, or groups, is that there is usually a lot of information available.  It can be a helpful thing to have varying viewpoints on such things as healing, medications, supplements, testing, etc…, because it allows the user to make more informed choices.  But there is darker side to all this information. When a newly floxed person first ventures into the waters of internet in search of answers on the mystery of FQ’s, the information can be overwhelming.  More than once, I have heard of a newbie turning away from the Internet because of the overwhelming shock of what they have discovered there.  Only after the shock has wore off do they venture back cautiously peering behind the door to see what information that they can glean hoping not to be brought to their knees again.

We, as humans, have a psychological tendency to project ourselves into another person’s journeys. So it is easy to read about another FQ victim’s horrific story and then place ourselves firmly into that person’s shoes.  I am guilty of this every now and then. I read another FQ victims tale of tragedy and see myself in those shoes.  Then inevitably, if we put ourselves in that position, we usually experience worry, fear, depression, and anxiety.  Although these emotions are normal for anyone experiencing illness, they can be exacerbated by too much information.  We have to temper our fear with the fact that everyone’s physiology is different and that there are a million different variables in play.  Even though reactions can be similar in nature, there are no two completely identical reactions.

So how do we get past this emotional overload?  That is a hard question to answer.  Each newbie that usually enters into the world of FQ damage is mainly there for a few simple reasons.  Those reasons are usually for information and comfort.  I have found that most people want the truth; they do not want to be lied to or have any information candy coated. Other the other hand they do not want to be punched in the face with it either.  If a newbie, who enters the FQ scene, runs into the wrong person, who by their own personal circumstances are cynical, cold, angry, frustrated, and depressed, they can be set off on the wrong path, sometimes with tragic results.

Even a seasoned FQ sufferer can be negatively affected by another person’s hopelessness. Every now and then I, myself, get too caught up in someone else’s depression that I have to turn away from it for a while, lest I fly to close to the sun and singe my wings.  After all, there are some dark realities out there that scare us if we look at them to long.  Man, as a creature, is not new to suffering and FQ victims do not have a monopoly on it. But our plight is unique in that we have been damaged by an ignorant medical establishment through no fault of our own. However, mankind has long wrestled with the just world hypothesis and why bad things happen to good people.  I have never met an FQ sufferer who deserved to be poisoned by a toxic drug given to them by a medical doctor.  But when we, as seasoned FQ sufferers, talk to those that are newly floxed have a responsibility to help them ease into the discomfort of the situation, lest we perpetuate one bad instance after another.

Another way to overwhelm the new FQ sufferer, or the seasoned one for that matter, is with pure information overload.  Now I consider myself a fairly smart person and I am able to understand most information given to me, even though I may have to reread it numerous times. But, even I get overloaded with raw data from individuals.  FQ victims run the gamut as far as intelligence goes.  Their intelligence stratum is very varied from those who barley understands what is happening, to those who should be splitting atoms in a lab somewhere.  I will give you an example.  The other day I asked a question of another floxie about brain neurotransmitters, which I consider myself fairly well versed.  I received the following information as part of an entire page long dissertation of raw data. “The seven mammalian TRPC channels share a structural motif in the COOH-terminal tail, the TRP box, which is located close to the intracellular border of S6 and contains the invariant sequence EWKFAR.”  What??? Now to me intelligence is not a matter of just what you know, it is also conveying it to others in a form in which others can understand it.  This goes for all the data associated with FQ’s.  We need to convey data in such a way that everyone understands what we are trying to say, especially the new victim.

What is the morrow of this story?  I was never offered a comforting hand until well over a year into my plight, even though I was posting on the Internet. There are newly floxed individuals coming into the community everyday.  They arrive here either by having it suddenly thrust upon them or by a long trail of clues and connecting the dots. When they arrive they are experiencing dozens of different emotions including fear, isolation, anger, confusion, disbelief, depression, anxiety, and on and on… To keep from alienating them we need to have compassion combined with truthfulness.  One without the other makes the road a harder one.

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Posted By admin on January 18, 2010

One of the biggest hurdles that we face as FQ victims is determining the type of reactions that we are having.  Becoming an FQ victim creates absolute uncertainty.  When we experience a new symptom we wonder if that symptom is with us for a day, a week, a month, or permanent. We want to know whether our reaction is going to be long lived or short lived or whether it will be intense or mild. As the old adage goes, there are no easy answers for those questions and anyone who tries to tell you something different is trying to sell you something.

FQ damage involves a complex morphology that is not yet fully understood. This damage can affect everything from your tendons, to your central nervous system, to your DNA, plus everything in between.  Now, add to the mix that everyone’s physiology is different and you get a very complex stew.  On top of that, some of us were perfectly healthy prior to FQ damage, while others had prior sickness and disease, while yet others had allergies and sensitivities. Now toss in other variables that play an important part of the mix such as the age of the person, weight of the person, type of FQ taken, dosage amount, concurrent medication that was taken at the same time, and length of treatment.  It is analogous to having a handful of dice and rolling them onto the table.

Having said all that, there are some loose guidelines that I personally follow when trying to get a basic idea of the severity of a reaction.  Some would probably accuse me of being irresponsible and I will probably even catch some flak for posting this information but just remember it is my opinion only.

I believe the quicker and more acute the initial onset of ADR’s after the initial reaction, on average, usually means a more compressed timeline for the reaction.  These reactions are akin to being shot by a shotgun at about 3o feet.  Whether it is a single or double barrel depends on a lot of the factors that I had listed above.  These reactions can be very acute with sudden and horrific ADR’s.  The positive side to this, if there is one, is that these types of reactions usually clear up faster, although it’s virtually impossible to tell this to someone who is actually going through it. 

Conversely, I believe the longer the initial onset of the ADR’s after the initial reaction the more drawn out the timeline.  These reactions are usually spared the shotgun blast of the very acute reaction but instead have their reaction drawn out over a greater timeline.  It is unfair to compare one reaction to another, in terms of the suffering, because both reactions are equally traumatic to their victims. 

Usually, most of the reactions that I have come into contact with fall somewhere in between with a majority of them having a quicker onset.  Some people get really get confused with the term “delayed reaction”.  To have a true severe delayed reaction your symptoms usually present themselves months after your exposure.   If your reaction is within weeks of the exposure I usually consider it a quicker onset. But I have to throw in a caveat that occasionally there are those reactions that don’t fit or make any sense whatsoever.

A lot of FQ sufferers experience a commonality in their symptoms. That means one person will get a particular problem very severe while yet another person will get it very mild, but everyone will usually get it to a greater or lesser degree.  What is irresponsible is telling someone that their ADR should go away in a certain time frame.  I often read things like “those symptoms will lessen in 1 year” or “they will disappear by the third month.”  The problem is there is no “one size fits all” timeline for the ADR’s..

It is unfortunate that currently there is no cure for these reactions. It is my opinion that rarely does anyone get out without some sort of collateral damage.  There are theories, which I think deserve a lot of credence, that certain medical conditions seen by doctors today have their root in FQ exposure (but that is another article).  Having said all that, most people will see a significant amount of recovery over time. Someday we will know the truth.

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Posted By admin on January 11, 2010

“It could be worse; you could have recently been diagnosed with cancer like a friend of mine.” These words recently spoke to me by a co-worker ring through my ears with the frustration only known by those suffering from FQ damage. Feeling misunderstood I answered “Yes, but at least those with cancer have a treatment system available.”

This frustration is played out every day in the lives of those damaged by fluoroquinolones (FQ’s).  As I have described before, those that have had the happenchance to have been damaged by FQ’s understand what I am talking about.  These drugs, if they hurt you, they create the perfect storm: they damage you then prevent you from getting help to heal.  In a sense, you fall into a hole.  A black hole that is extremely hard to extricate yourself from.

After all, if I have cancer, diabetes, COPD, or most any other malady, I would have a medical system that would at least acknowledge my problem and suggest an appropriate treatment.  But those with FQ damage, through no fault of their own, are hurt by the medical community, then as if to add insult to injury are shunned and marginalized by the very same medical community that hurt them in the first place.

Even after dealing with this for more than two and a half years, I still find it quite amazing that in the 21st century with all our technology and supposed compassion for the sick and ailing, we, the floxed, have fallen into a hole, while in plain sight of the rest of society; A hole that the medical community denies the existence of.  Oh I know that there are other diseases, conditions, and sicknesses out there that have no cure.  But at least they are acknowledged by the medical community.  Those folks do not have to convince their doctor that their plight is real before attempting to get any help.

Often times this ignorance goes farther into our personal lives with family, friends, and co-workers who do not understand our plight.  After all, how can I have something that the medical community denies exists even though in a sadistic irony is documented in medical literature? Surely we must be stark raving mad. For most of us, we have someone close to us, whether it is a wife, parent, child, sibling or another floxed friend, that because of love helps us through this horror.  Every day I thank God for these few people that support me, because there are days when that is the only thing that gets me through the day. 

I often tell floxies that if they have a doctor who believes them, listens to them, understands that traditional therapies usually do not help, and is willing to help them symptomatically then they better hold on to them because it is a rare find.  Recently I had a long time doctor friend of mine, who is considerably older than me; ask for sources of where he could find information on what I am experiencing.  I gave him several website addresses.  The next time I saw him I could clearly see that he had read and understood the data.  He looked at me and said, “I had no idea that these drugs could cause such horrific effects.”  I looked at him and simply said “Thank you.”

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Posted By admin on January 3, 2010

I have been asked a lot, since I have such a drawn out reaction, how did you connect the dots and determine that this was the result of fluoroquinolone toxicity?  I have always been somewhat of a troubleshooter my entire life. Also, I have always been a curious person who learns about something if I do not know the answer.  So naturally, when something started going wrong with my health I started researching my symptoms.

I am not a doctor, nor do I have any desire to be one.  But if you are a FQ victim you are almost required to become doctor, if not forced to do so, to manage your own health.  After all, most of us are in this predicament because we trusted a medical professional with a treatment option that was not safe for our bodies.  Remember the old saying “Fool me once, shame on you; fool me twice, shame on me”?  Well since our floxing, I doubt there are many of us out there that will blindly trust a doctor’s opinion, test recommendation, or medication without carefully researching all the pros and cons.   You become a skeptical inquirer, a detective, a Sherlock Holmes.

It is a paradoxical irony that we then must turn back to the same system that hurt us to attempt to troubleshoot our problem.  Good medical practice requires us, however, to rule out any other possible cause of our symptoms so that we do not jump to conclusions.  Every time you research an opinion, test, or medication you gain knowledge – invaluable knowledge, specialized knowledge.  And where do you go for this knowledge? Well, obviously the first answer is the internet. After all you are reading this blog aren’t you?  I can find up-to-date professional quality information on any testing procedure, medication, disease, or syndrome on the Internet.   That’s the wonder of the internet, the amount of raw data available. 

I remember once telling a doctor that I found the answer for what I have on the Internet.  His reply to me was, “you can’t trust everything you read on the internet.”  This is true, assuming that I am a total idiot and do not have the capacity to skeptically filter out fact from fiction.  After all, that doctor did not have the answer to what was happening to me, even though the data was there.  Factual, reputable, knowledge about my condition was there in black and white.

That brings me back to us becoming the doctors.  There is a total failure in our medical establishment today.  The failure is that people like me, and there are thousands, damaged by a commonly prescribed drug, have nowhere to turn for treatment. So we turn to each other and share our knowledge about tests, medications, and opinions. And in the end we are left to be the doctors because the very doctors who prescribe the medication do not know its horrible capacity for maiming and do not know how to treat you once it has happened.

For some floxies, the answer is obvious as to what caused their problems.  An immediate acute response while on the medication leaves little room for error.  But others search for a while before the dots all connect up.  I have seen quite a few come onto internet forums years later when something connected the dots.  Sir Arthur Conan Doyle once said “Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth.”  So basically, if there was FQ usage in your past, and you have eliminated every other cause, you have your answer.

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Posted By admin on December 30, 2009

Just be glad you don’t have (insert your worst comparison malady here). I have heard this literally dozens of times as well meaning individuals try to comfort those that are suffering by pointing them to some malady that they perceive is much worse.  I call them comparison statements. 

To those that offer those remarks to others the must remember that levels of suffering are very subjective.  Therefore one person’s perception of suffering can greatly differ from another’s.  So by basically telling me to be thankful that I don’t have cancer, or diabetes, or COPD or another malady doesn’t not usually make me feel better.  I do not have cancer. I am glad I do not have cancer.  Does the fact that I do not have cancer does that diminish the suffering I have endured or am enduring with my FQ damage? The answer is a resounding NO. 

Conversely, I know people that have cancer that are cured and I know people with FQ damage that are in a wheelchair with terrible disabilities.  Good psychological practices dictate that we do not compare one person’s level of suffering to another’s, or the damage caused by one disease to another disease, or one chronic condition to another chronic condition.  By doing so, we can further isolate a suffering person who is not on the road to emotional well being and are still in an acute stage. In the acute stage, the very sick must put all their energy into healing and may not have the luxury of energy left over for emotional growth or to appreciate that things could be worse.

I have noticed that most of these comments are usually not made by the acute or chronic sufferer but by those that have made it through something traumatic or are not suffering greatly themselves.  But isn’t there better ways to comfort and give hope to the suffering than to tell them that they should be glad that they haven’t had their arms and legs dismembered in an industrial accident or that they don’t have a brain tumor.  Most people, even the suffering, are intelligent enough to be glad that they don’t have something worse. 

Some reading this may think that I am being a Scrooge.  That could be farthest from the truth.  I live for hope every day. I hope that everyone, who is suffering from the awful plight of having been given a medication, and through no fault of their own, have been damaged, recovers speedily.  What I am saying is look for more positive ways of encouraging those suffering from FQ damage or any other malady.  One thing this has done to me is to open my eyes to those that suffer from a chronic condition, regardless of the onset.

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

Posted By admin on December 26, 2009

Even though I knew this information already and had posted on it briefly in a few forums I wanted to document the information that links fluoroquinolones with the older anti-malarial drugs that were known to be very toxic.  This is a very basic overview in a nutshell for those who need to know.

I was once discussing FQ’s with a rheumatologist who made the observation that he knew of some chemotherapy agents and anti-malarial drugs that responded the same way as what I was describing the FQ’s of doing but had never heard of an antibiotic acting similarly.  After the conversation, my interest was piqued so I put on my Sherlock Holmes cap, something that every floxie does quite frequently, and researched where the FQ’s came from.  I read the “Flox Report” again and it lead me to research the link between FQ’s and anti-malarial drugs.

So after I started my search I ran across an article called “The New Quinolones: Back to the Future, by Julian Davies © 1989 The University of Chicago Press.” In this article the author stated that “the quinolones were discovered by accident as a side product in the synthetic preparation of an antimalarial agent.”

The older anti-malarials, the drugs that were discovered in the early 1900’s to fight against the spread of malaria in third world countries; they were very potent and toxic drugs.  One older anti-malarial drugs, Chloroquine, was discovered in 1934 at Bayer laboratories. This drug later became the predecessor on which today’s FQ’s are based. Cholorquine was considered too toxic for human use and it was not used on humans for over a decade after its discovery until World War II.

In a 2008 medical journal listed on Pubmed titled “Antimalarial Therapy Selection for Quinolone Resistance among Escherichia coli in the Absence of Quinolone Exposure, in Tropical South America” the author’s state, “The pharmacore of the fluoroquinolones and chloroquine are similar. In fact the origins of the quinolone class are from the use of chloroquine as an antimalarial. A compound isolated from the commercial preparation of chloroquine was modified to produce the first marketed quinolone, nalidixic acid. Fluorine was subsequently added to produce the fluoroquinolones, resulting in both an increase in potency and spectrum.” This article actually deals with the fact that the use of chloroquine in tropical countries is producing a FQ resistant strain of bacteria.

What is the significance of all of this? Well for us floxies it is important to know that Chlorquine can be a nasty drug.  It has a laundry list of adverse reactions including, gastrointestinal problems especially stomach ache, skin problems including alopecia, itching, and rashes, headache, nervous system problems including psychosis, depersonalization, serious concentration problems, depression, anxiety, confusion, dizziness and peripheral neuropathy, cardiac problems including Qtc prolongation,  and severe eye toxicity including blurred vision, extra ocular muscle palsies and retinal toxicity, Hemolysis with G6PD deficiency. And, on top off all of this it has been documented that it can remain in the body for up to five years or longer in measurable doses!

Now back to the rheumatologist that I spoke with at the beginning of this article, I like that doctor and he is well meaning, and I intend on educating him. But, if I can connect the dots with a computer and a few minutes of internet access so can he.  There is no excuse for ignorance in the side effects of these drugs or any drugs.

Category: General Medical, History | 2 Comments »
Tags: Doctors, General Medical, History