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.