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.

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!

                Most, if not all, FQ victims, who had reactions during or within a year or so after taking an FQ, undergo the same evolution in the diagnosis of their reaction.  That is, in the beginning of their search for answers they will go from doctor to doctor, undergoing medical test after test to determine the cause of their malady.  Now, as I have said before good medical practice requires us to rule out any other possible cause of our symptoms so that we do not jump to conclusions, or miss something very important.  A majority, who are suffering from self-admitted fluoroquinolone toxicity, have received various diagnoses, many of them multiple diagnosis, from different medical professionals in their quests to find answers.  These diagnoses have run the gamut and have included chronic fatigue syndrome, chronic regional pain syndrome, fibromyalgia, gulf war syndrome, lupus, Lyme disease, multiple sclerosis, ALS, various rheumatoid diseases, disautonomia, ankylosing spondylitis, and many, many more (this list is definitely not all inclusive).  Others have been diagnosed with undefined collagen vascular disorders or present a mysterious set of symptoms that do not quite seem to fit in any category and defy appropriate diagnosis.

                Now I do not want to give the impression to the reader that I do not believe that a majority of the above list of diseases are not legitimate maladies.  I do.  As a matter of fact, with a very knowledgeable and thorough physician it is possible to achieve a definitive diagnosis in many of these categories. But what I do believe is that there is a certain percentage in each of the above categories, and probably many more categories of disorders, that may have been misdiagnosed and that are actually suffering from fluoroquinolone toxicity.  The frustrating part of this is that most of these individuals, if not all, do not suspect that FQ usage in their past is a prime suspect.  It is hard to define or quantify any specific numbers of individuals that are in the misdiagnosed percentage of any disorder but since there have been hundreds of millions of prescriptions of FQ’s since their inception the amount could be staggering.  According to information I received from the Fluoroquinolone Toxicity Research Foundation it has been estimated that more than 10% of the entire world population has been prescribed a fluoroquinolone up to the year 2005. Between 1993 and 2005 there were 300 million patients treated with levofloxacin worldwide alone.  Anyway, at the bare minimum more than 13 million such patients, during that time frame and many, many more if you extend the reporting period to 2010, had experienced an adverse reaction that was not recognized, reported or treated by the physician.   I think the key phrase is “not recognized” or if I may rephrase, not connected back to the FQ usage.

                So, based on conversations with many FQ sufferers, reading hundreds of posts, documents, and on just plain old anecdotal evidence, I believe that many individuals who have taken FQ’s and had no noticeable reaction to the antibiotics go on to develop symptoms that eventually lead to a diagnosis of one of the above categories many years later. The typical patient and doctor usually expect the side effects of a medication to manifest while the patient is taking the medication and they assume that the side effects can be mediated by discontinuation of the medication.  This is common assumed knowledge among a majority of physicians. This is not the case with FQ’s.  For some patients, and the numbers are not clear, it seems as though the side effects can last indefinitely and, as many FQ sufferers know, can become worse long after the medication has been discontinued.   Still, some patients who have absolutely no side effects whatsoever while taking the medication go on to develop a malady that is never connected back to the FQ many months or many years down the road.  

                I am not a conspiracy theorist, alarmist, or someone who sees FQ’s hidden under every rock.  As a matter of fact I am just the opposite.  However my theory (not really mine alone, there have been quite a few championing this idea for a long time) that FQ’s can cause other problems long after ingestion really started changing after I started this website. Since starting this website I reached out to all FQ sufferers, especially those that are having protracted reactions to the medication and I am hearing from those individuals.  I am now seeing that these protracted reactions run the gamut in severity and length.   A lot of these reactions do not follow a set pattern and only after much detective work do some sufferers finally connect the dots and make their own definitive conclusion. Take a look at this brief case story:

Barry was an active executive for a large national corporation.  He travelled very frequently within the U.S and occasionally internationally.  In the mid nineties and seemly out-of-the-blue, Barry developed what was diagnosed as chronic fatigue syndrome.  He described that there were times when he barely had enough energy to walk from the bedroom to the kitchen to eat.  His joints were weak and frail, and he developed sensitivities to foods and some medications.  Doctors were perplexed and they surmised that he picked up an “unknown virus” during one of his international trips.  Thousands of dollars of testing turned up nothing conclusive.  After about five years his chronic fatigue symptoms abated although his sensitivities remained.  Over time some sensitivity to medications got better but to this day, sixteen years later, he still cannot eat many foods that he once enjoyed and has intolerance to aerobic exercise.  After reviewing his medical records, Barry discovered that prior to this ordeal he had received a three week course of Floxin for prostatitis. He had no reaction to the Floxin while taking it or immediately thereafter.   

In the above case story Barry was officially diagnosed as having Chronic Fatigue Syndrome based on the symptoms that he was exhibiting.  His medical history was reviewed time and time again during the detective process but each time the FQ was never suspected as either the cause or the exacerbation of the condition.  Do you know of a loved one, a friend, a co-worker, or someone else who suffers from a diagnosis of mysterious origin? If so ask them to do some detective work to find out if they have had FQ usage in their past, and not necessarily their immediate past. There are many more stories out there like Barry’s and because of the fact that there are no long term studies of the effects of these drugs on people, all we have in anecdotal evidence.  This insidious response from the medication creates the perfect storm in which it disguises itself so the patient and the doctor do not associate the adverse reaction with the medication.  Time severs the link between cause and effect and in a sense it becomes a chameleon whose damage is blamed on something else.

I believe that some of the fear, justified or not, lies in the pages of the Flox Report, written by Teo Boomer and last updated in March 2007.  On page 139 of the Flox Report the author states “We have not recorded a single case of a person that has not improved over time, save the cases of those that had very severe reactions and opted the way of helping the symptoms with drugs for sleeping, for anxiety and for the pain. And even taking those medicines, you can recover from a severe reaction, but it is less likely.” And “In severe reactions, there is a clear link, a very strong relationship between the psychotic drugs taken and the outcome after 5 or 6 years. The more drugs taken for depression, anxiety, insomnia, nerve pain and seizures, the worse the prognosis (likely outcome). “

Because of this information, I have had quite a few FQ sufferers question me about the validity of this information when trying to decide on whether to take something for their psychological issues.  After all when a FQ sufferer seeks treatment for his acute reaction it will usually lead him to a physician or psychiatrist that will recommend and prescribe a psychotropic substance. As matter of fact, some physicians recommend long term low dose benzodiazepines or anti-depressants as a treatment, which would contradict the above statements.   I have spoken with many FQ sufferers who have taken both benzodiazepines and antidepressants to assist them through their ordeal and frankly they do not know whether it harmed their recovery or not.  I wrote and earlier article on antidepressant usage using anecdotal information shared with me by other FQ sufferers.

I have scoured the Flox Report for any more references to this controversial information but cannot find any.  There are many questions to asked here: Do psychotropic substances delay only the neurological recovery or does it include the muscular skeletal recovery also? How do we know these psychotropic substances actually altered (lengthened) the recovery process?  Where these just subjective observations made by the sufferers? If one stops taking psychotropic substances does the recovery process hasten? These are very strong statements that have inspired fear and caution in many FQ sufferers but I cannot find any more information other than this subjective and anecdotal reference.

Now I understand that any information that we collect is considered anecdotal by the definition of “reports or observations of usually unscientific observers.”  I however would like to try and shed more light on this mystery so I am asking the help of you, my readers who are also fellow FQ sufferers.  I have created a very short survey that I would like each of you to take to help us understand this conundrum even more.  It may or may not shed any more light on this mystery, but it is worth try.  Please click here to follow a link to the psychotropic medication survey.  I promise it is short and will take only a few seconds of your time, but the information we garner may be of help to others.  Please remember that we must not get complacent in our battle for a solution to these reactions and every clue that we can uncover will place us closer to that goal.  I get contacted weekly by new sufferers who are looking for answers and any information that we can provide to empower them will place them further along in their information journey than we were when we started this challenging ordeal.   I will post a follow up to this article in the future as soon as enough anecdotal information is provided to me by fellow FQ sufferers. In the meantime, please use caution when choosing any medication and always discuss any and all medications with your trusted medical professional.

Admin Update: April 19, 2010

Thank you to all who completed the questionnaire thus far.  Of the individuals that responded so far 3/4 listed their reactions as severe (both acute and delayed), and 1/4 listed their reactions at intermediate.  Interestingly enough 3/4 respondents said that they feel taking a psychotropic medication did not increase their recovery time so far and any negative effects abated when the psychotropic medication was stopped.  The other 1/4 of the respondents felt that it hampered their recovery time by increasing negative side effects and further unbalancing brain chemicals.  I will keep posting updates to this article as more questionnaires come in.

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.

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 moral 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.

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?”

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.

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 moral 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.

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.