Pretending Lyme Disease is Real

2009-03-01 | |
Last updated: 2009-03-01

Like other conditions with inconsistent symptoms and an insufficient body of medical knowledge to fully explain them, Lyme Disease often swirls in controversy leaving sufferers disillusioned at a medical system that seems to dismiss or explain away their health issues. However, such dismissal is not uncommon as those afflicted by fibromyalgia and lupus also have to contend with varying diagnoses from doctors not experienced or not convinced that observed symptoms are caused by the disease.

What is known about Lyme Disease is that it is caused by at least three types of bacteria and transmitted by different ticks in the North America and Europe. It is also recognized as being hard to diagnose in its early and late stages.

Uncertainty and disbelief are common responses by people to concepts with which they are unfamiliar. Whether it is from a lack of understanding, a fixed belief in “the way things work” or an inherent skepticism for concepts that have not been scientifically tested, there are always those who reject new ideas that are not easily explained. Even in cases where concepts have been scientifically evaluated, there will still be those who will never be convinced or who will need overwhelming evidence in order to change their minds.

When this skepticism and disbelief arises in health care providers, patients may suffer as their doctor looks at all of the well understood and accepted possibilities for the symptoms while dismissing those that reside in the gray zone.

On the other side of the coin, patients suffering from symptoms can often help to “convince” their health care providers that such conditions do not exist. Patients who do not communicate consistently and effectively with their doctor will often be treated with kid gloves as the doctor does his or her best to determine the most effective treatment given the fractured or inconsistent information being presented. Not following the doctor’s recommendations can also result in poor interactions between doctor and patient as the doctor will observe a patient who is not “serious” about treatment.

Additionally, patients who self-diagnose can contribute to their own frustration with the medical system and their doctors. Although there are smart people among us, most of us who are not trained in a profession will not know as much or be able to effectively understand concepts as well as someone who works in the area. We trust our bankers, lawyers and mechanics at some level based on their training, but more so on how freely they communicate with us. Unfortunately, we second-guess our doctors and either debate with them with insufficient background or simply shut our mouths because they don’t seem to “understand” what we tell them.

With all this in mind, it becomes clearer why complex conditions such as Lyme Disease are controversial. However, to get to the root of the problem and develop patient treatments, both patients and doctors have to work to a middle ground. Maybe Lyme Disease as a single condition is not real, but is actually a number of similar conditions that have not been effectively isolated and identified, thus the varying symptoms. Another option is that symptoms with different underlying causes have overlapping similarities with the symptoms of Lyme Disease. The truth is that nobody yet knows enough.

However, based on estimated annual costs of 2 billion dollars a year to US society and chronic patient affliction, trying to understand Lyme Disease like symptoms is an effort that our medical system should undertake and for which more centers of excellence should be established. If the Center for Disease Control is correct that Lyme Disease is underreported and is an epidemic greater than HIV, then it is really very under funded in comparison to HIV/AIDS.

While we can continue to debate whether individuals have Lyme disease or not, we can see the very real symptoms of unexplained inflammation, rashes and fatigue. If a doctor is not comfortable with making a Lyme Disease diagnosis, that is fine, but the patient should be referred to another doctor willing to entertain the possibility and who is more focused in that area of expertise. If, in the end, skeptics are correct and Lyme disease does not exist as one condition, no patient will be complaining if they are no longer suffering, but were diagnosed with a different condition that became understood because we put forth the resources to study it.

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