We have started our tenth year at Forum Health Knoxville (how time flies), and I am constantly reminded of all the interesting patients and their stories. Many began their journey trying to explain to me how very fatigued they were. Other symptoms such as headaches, joint pain, muscle aches, brain fog and sadness were also described. Some would apologize for the extensive symptom list. With tears in their eyes, we would discuss stress levels, sleep issues, ability to exercise, etc. I could sympathize with them, but I honestly didn’t understand the depth of their despair!
For most of my life, I have had an excess amount of energy which I have thoroughly enjoyed. I work hard but I also play hard. Saturday mornings in the summer were always reserved for biking Cades Cove with my husband. We would bike until 10 AM, which usually meant we had time for about 25 – 30 miles of continuous riding. Being outside made my heart sing –whether hiking, kayaking, fly fishing or gardening.
Everything changed in late winter, 2016. It became increasingly difficult for me to get out of bed in the morning. My legs would not cooperate and all my extremities felt hypersensitive. I had episodes of electrical shocks deep in my thighs. My arms felt sunburned. My hands began to tremor. Erratic heart palpitations added to the deluge of symptoms. Anxiety attacks would hit with no specific triggers and without warning. The overall fatigue was absolutely crushing.
Being a Nurse Practitioner didn’t make life easier. I had listed my differential diagnoses but now I needed specific testing to validate which one was making me miserable. I had a complete workup with a Neurologist which included a brain MRI, a spinal MRI, and a series of nerve and muscle tests where your body is shocked. Fortunately, all the tests were negative. I visited a Hematologist who discovered very low levels of immune markers and a few other out of range lab values. We ran a lot of cutting-edge tests at Forum Health Knoxville which gave me bits and pieces of abnormal results – but no diagnosis. My initial Lyme test came back “equivocal” which meant my antibody levels were right at the cut–off for a positive Lyme test.
During this time, I continued to feel completely debilitated. I had overcome thyroid cancer a year earlier with much less disability. In my exasperation, I decided I needed to write a book called, “How to Get Well when All Your Lab Tests are Normal.” However, I was too tired to write it!
More symptoms began to appear – severe joint pain in my wrists and my shoulders. Muscle pain in my biceps and intense pain in the lymph nodes in my groin area. Vasculitis (inflammation of the blood vessels) in both thighs brought more pain. I could hardly walk. I marveled at how easy walking was for everyone else and use to be for me. Something I had taken for granted my entire life was now so difficult for me.
I was out of work for over 3 months. If it weren’t for my family, close friends, and my deep faith in God, this journey would have been unbearable. In late June, my Lyme test was repeated with the same lab but looking at different markers. This time it came back positive for Lyme. Finally, I had a definitive diagnosis. A diagnosis is not the end, but my first step forward to wellness restoration.
The duration of my journey for a diagnosis was briefer than many patients with Lyme. Lyme disease is called “the great imitator” since it mimics so many other diseases. Getting a positive diagnosis can be very difficult. Though the CDC claims the characteristic bull’s eye rash (erythema migraines) is found in 70-80% of cases, most people never remember a bull’s eye rash or being bitten by a tick at all. I certainly didn’t. A Maine state report from 2010 found the presence of the rash in only 43% of cases and a 2002 study found the presence of the rash to be as low as 9% of confirmed Lyme cases.
Borrelia burgdorferi is the parasitic bacteria that causes Lyme. Its corkscrew shape allows it to bury down into blood vessels, muscle, joints, heart, brain, eyes, and skin. Another favorite hiding place of Borrelia is in the myelin sheath which covers the nerves. That’s why many symptoms of Lyme can mimic neurological disorders. If that were not enough, it can secrete a protective covering, called a biofilm, around itself so that the bacteria can evade the immune system and block the actions of the immune system. Another complicating characteristic of Borrelia is the ability to change its genetic makeup. It is the perfect stealth microbe!
What caused my sudden eruption of symptoms? I may have had acute Lyme. In addition, I may have had Borrelia for quite some time but my immune system was able to suppress it. Perhaps the combination of thyroid dysfunction and eventually thyroid cancer along with life stressors and other abnormal lab values was the perfect storm set up for me.
It is also possible that I also carry several co-infections found commonly in chronic Lyme patients. The symptoms and their intensity are different for each person. Besides multiple species of Borrelia, ticks can also carry other bacteria, viruses, and protozoa. Some of the more
common co-infections include Bartonella, Babesia, and Mycoplasma. All three bacteria can travel throughout the body attached to Lyme diagnosis is difficult due to the migratory pattern of the parasitic bacteria involved due to their ability to hide from the immune system and their ability to become dormant inside cells. From my experience, several labs, immune system evaluation, and a Lyme questionnaire are necessary to put all the pieces together to prescribe a customized wellness restoration program. Life is a journey and my journey with Lyme appears to just be beginning. My story may begin with a diagnosis, but my journey will end in wellness.
In the next article, I’ll describe my journey to treatment. It has been a long journey just to my diagnosis – but not one without hope! I’m working again, and my sympathetic heart has changed to an empathetic one. I listen just as closely as before, but now my eyes may have tears in them as well. My passionate desire to diagnose and treat others with Lyme as well as other chronic illnesses has risen to new heights. It’s amazing how God can teach me through this terrible disease to now reach out and help others.
If you have Lyme, think you have Lyme, know someone who has Lyme, or struggle with inflammation or immune system problems, spread the word, share this information and call our office at 865.675.9355 to learn how to begin your journey to wellness today.