Doctors miss Lyme disease diagnosis
Ten years ago, I had what would become a critically important conversation with an older woman, also a former trail runner. She had previously been stricken with a mysterious illness that no doctor could define.
Two years later and a whole lot sicker, she finally got the diagnosis: Lyme disease. The kicker was that she knew it was Lyme disease way before she could get a doctor to agree with her. They were adamant that Lyme wasn't in California.
Ten years later, most of us know that Lyme disease is here, and 2008 will always be, for me, the year my family met Lyme.
It started with Ribbon. The kids were thrilled with the new puppy. But, every return to our kitchen from outside revealed she was a tick magnet. It wasn't long before I pulled a tick off my son, Louis. The tick seemed barely attached, and I was sure it had been on him less than an hour.
Within the next two days, he had a very red bar-shaped rash. It wasn't a ring or target rash, so I knew we didn't need to worry about Lyme disease.
Wrong — absolutely wrong! The target rash is rare; less than 10 percent of Lyme patients have had one. If you have one, you have Lyme. But, if you don't have one, the jury is still out.
By February 2008, Louis started complaining of exhaustion. Other symptoms followed — aching legs, and feet "heavy like lead." The pediatrician set about trying to figure out what could be wrong.
I asked about Lyme; after all, there was a known tick bite. He said confidently, "It can't be Lyme. The tick wasn't on for 24 hours and he didn't have the target rash." Again, this is wrong. Infection can take place after 15 minutes. But that night, I was relieved.
The next morning, I knew it was Lyme. Joint pain had been added to Louis' list of complaints. The doctor refused to pursue Lyme disease. He was adamant. I remembered the Lyme conversation 10 years ago and knew that it had been a gift. Similarly to the trail runner, here I was faced with a doctor who was sure of his facts.
The problem was that he ignored other facts, such as a known tick bite and Louis' clinical assessment. His symptoms were in alignment with Lyme, a neuropathic ailment. It turns out that feet "heavy like lead" is a beautiful description of a neuropathy.
There is more to this story. Louis became a very ill little boy. One year later, he is finally able to do well at school while still being treated. It has been a huge struggle.
But, there is another gift in this story. This fall, I was diagnosed with Lyme disease. Turns out the last four years of dizziness, vertigo, asthma, vision problems, fatigue, heart palpitations, sleeplessness, cognitive deficits, stabbing pains and even the plantar fasciitis really aren't normal parts of aging, at least not at 43. I am sick.
Without Louis' acute presentation, I would never have discovered my own Lyme disease. I would have just slipped away. A conversation with a trail runner essentially saved us.
To extend this Lyme conversation to as many people as possible in our community, there will be a "Lyme Disease Awareness Night" at 7 p.m. Wednesday, March 4, at Ladera Community Church. Three Lyme-literate and wonderful doctors are coming to talk about this emerging disease. They are: Dr. Christine Green, Dr. Deborah Metzger and Dr. Nick Harris (founder of Igenex).
Come and learn. You may save yourself or someone you love a great deal of suffering by simply learning basics of prevention, diagnosis and treatment.
"Lyme Disease Awareness Night" begins at 7 p.m. Wednesday, March 4, at Ladera Community Church, 3300 Alpine Road in Portola Valley. For more information, e-mail firstname.lastname@example.org.
About the author
Kathleen O'Rourke is a Woodside resident who has organized a Lyme disease awareness event, set for March 4.