What's In a Name?

by Donna Reagan

“What’s in a name? That which we call a rose by any other name would smell as sweet.” -William Shakespeare

Everything and everyone has a name. Ask a linguistics professor, who studies language, and s/he might tell us that names of inanimate objects like ‘table’ and ‘chair’ are quite arbitrary and could have just as easily been named ‘bunta’ or ‘cooglie’. (I only took one linguistics class in college so naturally I’m just making all this up. But hey – stick with me. I’m curious about where I’m going with this. Please don’t leave me lonely AND confused!)

When it comes to names of people, however, I believe that Professor Linguistics would also say while most languages give a meaning to various names of people, ultimately again, they are arbitrary in the sense that it is WE, the culture, who have provided that meaning and we could have easily provided a different meaning to the same name or vice versa. For example – my name, Donna, means “lady” and I know those of you acquainted with me are laughing quite hysterically. My name could just as easily have meant “abrasive broad who curses like a drunken sailor”. Fortunately it does not – so at least I now have a life goal – and that is to live up to my own name.

Growing up like many kids, I used to judge people by their names. I think many children, often ostracize playmates that do not have what is considered a ‘common’ name. I think what most mothers eventually realize is that names go through cycles of what is popular and socially acceptable within that war-zone referred to as a playground. I was relieved as a child, and still as an adult, that my mother did not name me after my great-grandmother…Orvetta (may she rest in peace). Orvetta, to me sounds like a hefty, homely farm girl with a really wide nose and thick calluses on her feet, as does the names Bertha and Gertrude. (To all the Orvettas, Berthas, and Gertrudes out there – I apologize for my narrow-mindedness and childish stereotyping!)

Even to this day, as a level headed…um, ‘lady’, for me those names still have that connotation in my mind. I’m not sure what their ‘official’ meanings are as I’m much too lazy to look them up – but I still think of really portly, very plain women, perhaps possessing a bit of a nasty attitude because they’ve had to combat stupid attitudes such as mine all of their lives. However, as I’ve aged and expanded my… mind, I also realize the name Donna can also call forth the image of a fat unattractive woman with a nasty attitude, especially after I wake up in the morning and peer into one of the few mirrors I’ve allowed in our home. Yet all of that is really beside the point.

What I think is truly important is the names given to our various sets of health-related symptoms. To Professor Linguistics, while the names themselves are still quite arbitrary – to the doctor and patient, they certainly are not. In fact, the name given to a patient’s set of symptoms can be a life and death designation.

As mentioned in my other columns, Lyme disease has over 350 symptoms and is called the “Great Imitator” (much like syphilis) because it can mimic over 300 other diseases. Lyme disease has been misdiagnosed as such syndromes as Chronic Fatigue Syndrome, Fibromyalgia, Irritable Bowel Syndrome, Interstitial Cystitis; and such diseases as ALS (Lou Gherig’s disease), Alzheimer’s disease, Multiple Sclerosis, Lupus, Rheumatoid Arthritis, and so much more!

Many patients with a litany of symptoms spend years searching for a physician willing to name their collection of symptoms. Most of these ‘complicated’ patients receive the tried but often untrue definition of “depression” early on in their quest. For many doctors, depression is their first and sometimes finest attempt at a diagnosis. It’s a ‘catch all’ diagnosis meant to pacify the patient and collect the co-pay, thus allowing the dear doc to move on to the next paying customer.

While a patient with depression myself, it does not explain the entirety of my symptoms and therefore was not the end all diagnosis to solve my problems. In fact, for me I believe the depression to be a secondary syndrome because of the fact that I could find no one brave enough or smart enough to name my collection of symptoms! Initially, when I was meek (yes, there was a time when I was meek – quit laughing!) I accepted, with shame, my depressive label. Finally I began to understand depression is often a chemical imbalance…. which could be caused by some underlying ailment that had NOT been previously addressed; and so I continued searching for answers.

As a patient, I have been poked, prodded, x-rayed, and bled more times than I can count. I have been told I could have a variety of diseases and syndromes. Depending upon what kind of doctor I was seeing, determined what kind diagnosis I received

Although I saw approximately 11 doctors prior to my diagnosis of Lyme disease, I feel I am quite fortunate in two regards. First, I feel quite lucky that I only had to endure 11 doctors instead of 40, before finally gaining a diagnosis I can trust. Second, I feel quite lucky that I have a diagnosis I believe I can trust.

Can you say that? What have YOU been diagnosed with? Have you been diagnosed with a syndrome – of which there is no clear causative agent identified, just a collection of symptoms that doctors have agreed have a common group of symptoms? Or have you been diagnosed with a bone fide disease for which there is some kind of treatment or cure?

Prior to my diagnosis with Lyme disease – I was classified as having Chronic Fatigue Syndrome and Fibromyalgia, among other things. I had all the classic symptoms. I still do. However, I also have the symptoms and test results to indicate that those symptoms point to Lyme. Do I still have the CFS & the FMS symptoms? You bet. Does it matter to my body that I call it – CFS/FMS or Lyme? Not really. Does it matter at all? Well, yes.

While CFS/FMS have therapies that may prove useful to many patients – Lyme disease has a treatment protocol that, while it may not be able to promise a cure, it can and does at the least go into remission for most patients. So does knowing the difference matter? If you want to pursue remission; if you want to pursue greater health – it certainly does!

What about diseases such as ALS, Alzheimer’s disease, or Parkinson’s disease? I have symptoms of early Alzheimer’s disease and sometimes Parkinson’s disease because there are moments when I shake so badly I cannot possibly hold a cup, a fork, or control my fingers enough to type. Does it matter to my body what name I put on these symptoms? No. Does it matter to my overall prognosis? Absolutely!

The treatment protocols for the above diseases are vastly different than the treatment protocol for Lyme disease. For many that have had the misfortune of being misdiagnosed with a disease they do not have, such as ALS – the therapy intended to give them greater well-being could actually be making their health picture so much worse! So the name DOES matter – the diagnosis IS crucial.

What is so terribly sad is that Lyme disease is our nation’s second leading epidemic – second only to AIDS. According to Dr. Nick Harris, president of Irene Labs, a “specialty immunology laboratory and research facility” which has become the ‘gold standard’ for Lyme disease testing, “Lyme disease does not have the mortality of AIDS, but it does have a greater morbidity.”

What that means is that while AIDS patients suffer greater mortality rates, it is Lyme disease patients who have less functioning in daily life. Lyme disease patients generally find it more difficult to work and perform daily household tasks than do AIDS patients. With that being established, I often wonder WHY our great American government does not devote funds to educate the public and their physicians about this fact. It truly is quite necessary, as there are still doctors to this day that will exclaim there is no Lyme in the South. Can you believe that? And how I often respond to such statements largely depends upon my mood, but mostly it goes something like this:

“Why, I do declare, Dr. Doverylittle”, said in my best Scarlet O’Hara impersonation, “but I do believe anyone who believes such nonsense, must certainly be a scoundrel and a fool!” And then I slap them across the face with my lady-like white gloves. Okay, not really. Most of the time I’m just trying to gather enough self-composure not to jump into my cursing, drunken sailor state-of-mind to tell them what I really think, as well as resisting the urge to attack them with my cane.

Ticks and other biting, blood-sucking critters carry the Lyme bacteria. These critters, mostly ticks, attach themselves to humans, deer, house pets, mice, and even birds. We are a traveling American public – yes? And while I am not clear on the migratory habits of deer or mice, I am quite sure that birds fly south – do they not? So why is it that educated doctors and our own government refuse to spread the word that we are ALL in danger of being infected with Lyme disease? Why are we afraid to call it what it is? Why must we see a set of symptoms and look for every other possible disease or syndrome BEFORE we consider that it could be America’s second leading EPIDEMIC? Why must we endure so much stupidity?

Would it help if we referred to it as a Borrelia Burgdorferi infection – as that is the true, scientific name of the infection? Perhaps we could just call it Bb for short? Would that help? Or perhaps admitting that the second leading EPIDEMIC in America has infected thousands upon thousands of Americans currently misdiagnosed with Chronic Fatigue Syndrome, Fibromyalgia, Multiple Sclerosis, Lupus, Parkinson’s Disease, Alzheimer’s Disease, & ALS; perhaps that would be a risky thing to do?

Perhaps that would send panic into the streets, into doctors’ offices, and into our pharmacies? Perhaps revealing the truth about this EPIDEMIC in which 200,000 are diagnosed yearly – perhaps the truth about this disease would bankrupt our insurance companies and bankrupt our antibiotic supply? That would cause an economic upset as well as a great deal of panic. No, we shan’t have panic or economic upset! Let Wall Street reign supreme!! Instead, let us have a sense of peace, no matter how falsely derived.

Let’s just keep the status quo. After all, what’s in a name?