My story is a classic tale of chronic Lyme disease. In 2010, I suspected that I had Lyme disease. I contacted Dr. Ernie Murakami, M.D., a retired Lyme doctor in B.C. for his opinion. I told him that in the 70s and 80s I had significant exposure to ticks in North America and Europe while competing in the sport of orienteering, and that I had removed ticks from my skin. In 1980 I got sick with flu-like symptoms that went away after a few weeks, but I thought it was just a virus or from overtraining. Unfortunately, this illness left me with a constant vise-like headache. I was hospitalized and diagnosed with benign intracranial hypertension (increased pressure around the brain). The doctors tried a number of treatments, but nothing worked. I was also diagnosed with hypothyroidism (low thyroid) and put on thyroid medication for life.
Significant symptoms have been headache, light and noise sensitivity, fatigue, brain fog, memory lapses, mood swings, episodic insomnia, neck stiffness and pain, moving joint aches and night sweats/chills. I just accepted symptoms as part of life. I’ve had two gastrointestinal disorders, one of which required surgery after months of illness and severe weight loss and two surgeries for severe gum recession. I had always attributed these health problems over the years to training, stress, sports, hormone imbalances and aging.
Based upon my history and symptoms, Dr. Murakami told me that I fit all the regular criteria for chronic Lyme: started out like a flu, mysterious illness, multiple doctors, misdiagnosed or no diagnosis, symptoms ebb and flow in cycles, and no treatments have ever really helped. He strongly recommended that I get tested. In 2012, I saw my family medical doctor and went through the usual public health testing for Lyme. As expected, the ELISA result came back negative, so I sent blood samples to two U.S. specialty laboratories for comprehensive Lyme testing. The results came back definitive for Lyme disease, a compromised immune system and co-infections.
I had been a high functioning person with chronic infection for 32 years. Unfortunately, in 2014, Lyme disease reared its ugly head as it can often do years or decades after the initial infection. It left me bedridden for many months and suffering with severe rheumatoid arthritis. After three years of this devastating disease, I have experienced significant recovery, not complete but well on its way, slow and constant.
My story does not stop there, however, because I suspected that my oldest son also had Lyme disease. He had a completely different set of symptoms from me. His symptoms were all neurological: mood swings, depression, anxiety and psychosis. They had started mysteriously in his late teens and increased significantly to the point that he required continual hospitalization for mental illness symptoms. Testing of his blood and urine at U.S. laboratories were absolutely positive for Lyme. Was he bitten by a tick? Perhaps, but more likely is the Lyme infection was transferred from me to him during pregnancy. Recent testing in 2018 revealed that my youngest son also has Lyme disease, though he is largely without symptoms.
Lyme is a very complicated and demanding condition requiring complex and comprehensive treatment individualized for every patient. When it comes to experiencing and treating Lyme, I have it both ways. As a physician, I treat Lyme patients every day, and as a Lyme patient, I know exactly what every patient is going through. I have both a professional and personal stake in Lyme disease that has given me significant insight into the care my patients need.