The pain is unbearable, unrelenting in my collarbone and neck. Sharp, arthritic-like pain.
MRI results are in. I meet with my neurologist. I do not have MS. That is good news. A relief. But what is it then, this mysterious anomaly, this cavalcade of symptoms slowly taking over my life and radically altering my ability to do the simplest of tasks? I have been continuing to track them.
Here, Mr. Dr. Neurologist, here is my list again. He briefly peruses it. "Oh, they are just too vague and non-related to mean anything." "WHAT? Hold on a minute, if these symptoms are so vague how come they are interfering with my ability to live my life?"
"Well, I am concerned about a couple of your complaints. Your weight loss, night sweats and migraine. I’m going to advise your family doctor to test you for Lupus and Skeletal Rheumatoid Arthritis." Back to my family doctor.
Chest x-rays. Abdominal ultrasounds. Another round of endless blood tests. My bones ache and ache. I am in so much pain. My brain has turned to mush. I can’t bear to even hold hands with my daughter. And more than a sheet over my body at night causes great pain and discomfort. Maybe it is rheumatoid arthritis. Maybe it is bone cancer.
"I’m sending you for a bone scan."
I went for the bone scan on December 22, 2006. Back to the family doc. She plays the "Are you sure you are not depressed?" card again.
"Maybe you should go see a psychiatrist. Here’s a referral." Fine. I’d be happy to go just to prove that I am not depressed, or crazy for that matter.
"Please send me to a Rheumatologist. Doc, I have such terrible arthritis pain. Maybe what I have is Fibromyalgia. Perhaps a Rheumatologist can give me some life-style suggestions for controlling and dealing with the pain."
"You don’t have fibro, Shannon. And your bone scan was normal. So you don’t have rheumatoid arthritis. Your blood test shows you have no inflammation in your system but if you insist, I will refer you to a Rheumatologist. I doubt he will even see you."
Off to see the Rheumatologist accompanied by my ever-growing symptom list. Of course, Murphy’s Law prevails and my arthritic symptoms have waned just in time for this appointment. "Shannon, there's no way you have fibro. You don’t have the personality for it."
Really! Where do statements like this come from? I didn’t know diseases were assigned personalities. Dr. Specialist continues to wax eloquent...
"I’d say that you’ve probably just ‘hit a rut.’ You seem like a highly motivated individual. I’m sure you’ll pull yourself out of it." What a complete waste of time. Ever been given a pep-talk by a pompous, arrogant know-it-all?
"No no! Doctor, you don't understand. I used to run eight km a day and weight train an hour every day. I WANT to do that, I have the DESIRE to do it but I can not physically do it because I am in such tremendous pain!"
"I’m sure your pain is real for you."
Flippant comments like that are not helpful, not professional, and are extremely irritating.
I'm shutting up now, and am going to sit here and smile and nod until you finish your pointless pep-talk and then with my dignity barely intact, I will march my aching body and my non-existent life out of here.
My condition is benign, according to his expert opinion.
I will not book that appointment with the psychiatrist. Not interested in wasting my time, or his time. I KNOW my problems are not imagined. But I don't have the emotional or physical stamina to deal with any more doctor's visits. I am tired of trying to make them believe that there is something physiologically wrong with me. I give up. I can't keep trying to figure this out anymore.
My husband talks about my health issues to our surgeon friend in Ontario. He asks many questions. I think I know what might be happening with her, but let me do a little digging and I’ll call you back. Phone rings three days later. "I’ve been checking into Shannon’s symptoms and I believe she may have Lyme disease."
"What is Lyme disease? Isn’t that something you get from a tick bite?"
That can’t be me. I’m a city girl, not a nature girl. My idea of gardening is stuffing my artificial Christmas tree into a decorative garden urn full of dirt. I Google Lyme Disease.
And lo, there is my symptom list! Every single last one my symptoms is listed before my eyes. How is it possible that every doctor I have seen over the past nine months have missed this? One would think this is so obvious. Every last one of the symptoms that I have experienced is listed as a symptom of Lyme disease. In fact, by the time I receive my clinical diagnosis of Lyme disease, I present with 57 of the 75 symptoms listed on a diagnostic check list.
"Hey family Doctor, I'm back! Listen to this. Our surgeon friend thinks I may have Lyme disease." To my relief, she is open to the suggestion. For she is just as frustrated as we are with my perplexing medical situation.
"Hmm, sometimes all it takes is a fresh set of eyes. I’ve recently had another patient happen across a doctor in Hope who seems to be knowledgeable in this area. It might be helpful for you to see him, so I am going to refer you to him, as well. His practice is out in Hope. So, let’s hope for hope in Hope. And in the interim, I will send you for a Lyme test. But just so you know, in 20 years, I have never had anyone test ‘positive.’"
Ah yes, the great test debate that I have been reading about. Upon my own investigation into this disease, I find a plethora of information on the importance of diagnosing Lyme based on clinical presentation as opposed to serological (CSI type evidence) tests and results. The tests are known to be highly unreliable and insensitive. But in general, clinicians have no clue about this, and and so rule out a positive diagnosis when the test comes back negative, even with the presence of symptoms!
Even the CDC has gone on record stating, “that commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.”
Furthermore, how is it that we in BC are still so misinformed about the symptoms and the need for a clinical diagnosis of Lyme disease? In fact, clinicians seem to be woefully unaware or unwilling to even acknowledge the prevalence of Lyme disease in this province?
Basically, that ignorance has cost me nine months of my life.
I go for my Lyme test and wait to hear from this doctor in Hope. I'm contacted the next day and given an appointment with Dr. M for April 11, 2007. Dr. M is the first doctor who asks me what my quality of life was. “What life?” And then he asks me to assign a percentage to it.
"I don’t think it would be an exaggeration to say that it is about 30% of what it used to be."
Both my husband and I respond together. We look at each other. We are both struck by that. We know our life has been radically altered because of my illness and that we no longer function "normally" anymore, but to have it assigned a number is a rather dismal eye-opener. To finally have a medical professional acknowledge this loss as real and significant is a profound relief.
Dr. M then proceeds to take a thorough health history and physical exam. Our first appointment with him lasts well over an hour. At the end of it, he clinically diagnoses me with Lyme Disease. He says he is willing to treat me.
We are dumbfounded. There is really no sense of relief. With diagnosis comes the reality that I now face an uphill battle to restore my health, as this insidious disease has had nine months to take up residence in my defenseless body.
However, we are buoyed by the knowledge that at least we finally know what it is that had so radically altered our life. Armed with this knowledge, we can wage war on it and begin getting our life back.
Update: Shannon's doctor in Canada retired in 2008 and she was forced to find treatment in the United States. She continues to fight the disease, and her two sons have been diagnosed with Lyme as well.
To view a video about Shannon's family's struggle with Lyme, visit http://partnersinlyme.blogspot.com/
Shannon Goertzen, Canada