Eating Crow with Lyme
I HAVE OFFERED
ADVICE, AND LATER
BEEN FORCED TO
At the end of another busy day in the office I leaned back in my chair and propped my weary feet on the corner of my desk, the only flat space not otherwise occupied by charts, forms, and the remnants of lunch. Gary, my office partner, and I were sharing “war stories.” A couple of our patients that day had been particularly challenging. “You know what?” he grinned. “Medicine is a humbling profession!” Oh, how true!
Medicine is humbling in many ways. Not only is the human body infinitely complex and prone to all sorts of pestilence and manifold frailties, it seems like the rules keep changing! Is margarine better for you than butter, or not? For those with diverticulosis, should your diet be free of seeds, nuts, and skins? Or does that extra fiber actually do you good? Should ladies in their menopausal years be on estrogen to prevent osteoporosis ... or ... not? As new information is available, we sometimes have to rethink the old standard recommendations. On more than one occasion I have offered authoritative advice, and later been forced to “eat crow”!
Where Do I Learn More about Lyme?
Where can parents start learning more about the disease, find knowledgeable
practitioners, and get accurate diagnoses?
PREVENTION AND SYMPTOMS
Since the medical field has differing opinions on Lyme disease treatment and diagnosis, you’ll want to be aware of the official Centers for Disease Control position as well as frontline clinicians’ experience and recommendations.
FINDING A LYME SPECIALIST
At this time, there is no national list of Lyme specialists. The best way to locate one in your area is to ask a local Lyme support group for recommendations or email Turn the Corner at firstname.lastname@example.org.
FIND A LYME DISEASE SUPPORT GROUP
Lyme Disease Network
TOOLS FOR PATIENTS/CAREGIVERS
- My Lyme Guide by Marjorie MacArthur Veiga and Sarah
- Cure Unknown: Inside the Lyme Epidemic by Pamela Weintraub
HAVE A HELPFUL LYME RESOURCE?
Share it on HSLDA’s Facebook page.
Never has the crow been more difficult to swallow nor had more profound implications for my patients than on the topic of Lyme disease. I used to believe (and most of my fellow family physicians continue to believe) that Lyme disease is hard to get and easy to treat. In fact, I as much as stated this in previous articles I wrote on the subject.1 For years I reassured my patients with tick bites that their chances for contracting Lyme disease were slim. I gave them a list of symptoms to watch for and adopted a “wait and see” approach. For those suffering from Lyme-like symptoms, but with no clear history of tick bite and rash, I rarely did blood work.
But I am now convinced that, at least in my neck of the woods (northeastern Pennsylvania), Lyme is easy to get and hard to treat!
What changed my mind? Personal experience. A family member began to suffer a wide variety of strange symptoms 12 years ago, including facial numbness, slurred speech, problems with balance, abdominal pain, and headache. After a few baseline studies, her physician informed her that she was depressed and offered antidepressants. She told the physician she had read about Lyme disease and requested testing. He refused, stating (as I had to several of my patients) that her lack of history of tick bite and the classic rash disqualified her from any consideration of Lyme disease. But she worked and lived on a farm, had pets in the house, cut her own firewood, and spent much of her day outdoors. Deer (carriers of the primary Lyme disease vector, the blacklegged deer tick) were as plentiful as cows on the farm. The ingredients were all there ...
She changed doctors and her new physician agreed to order an ELISA antibody screening study for Lyme disease. It was negative, she was reassured, and further workup was deferred. But the symptoms persisted, gradually worsening with time. She developed heart rhythm disturbances, migratory joint and muscle aches, and increasing weakness. The Lyme studies were repeated, this time including the Lyme Western Blot. Again, she failed to meet Centers for Disease Control criteria for Lyme disease. Multiple specialists, including neurologists, rheumatologists, and cardiologists, saw her; no one could figure out what was wrong. I kept thinking, “This seems to fit Lyme disease, but the tests are negative ... Hey, what do I know, these guys are specialists; I’d best keep my mouth shut.” Finally she was seen by a Lyme specialist. He initiated aggressive therapy for what he recognized clinically, and what was shown on repeat testing, to be a raging untreated case of Lyme disease. After years of misery and tens of thousands of dollars in medical costs, she is gradually getting better.
This same scenario has been experienced at the HSLDA headquarters in Northern Virginia. Multiple coworkers are suffering with Lyme disease, but struggling to find adequate treatment in a skeptical and woefully uninformed medical system. The impact on HSLDA cannot be overstated!
How is it that so many competent, caring practitioners are blinded to the truth of this epidemic? The answer is simple, actually. Like me, they followed the rules as established by the powers that be at the Centers for Disease Control, unaware that there was even controversy regarding the diagnosis and treatment of Lyme disease.
In reality, however, a battle rages between the governmental healthcare policymakers in their well-insulated ivory towers and many frontline clinicians, for whom personal experience clashes with the so-called “standard of care.”
The true victims of this war are innocent Americans: hardworking, upright, and honest individuals like my family member and my HSLDA colaborers, suffering mightily with this brutal disease but with precious few viable options for treatment.
In a role outside his usual job as HSLDA chairman, Michael Farris was appointed by the governor of Virginia to head a task force to explore the issue of the Lyme epidemic in Virginia. The goal of the task force is to discover better ways to prevent, diagnose, and treat Lyme. Surrounded by those in the throes of the illness, Mike is a motivated man! As he volunteers his time, energy, and intellect to this monumental project, I hope and pray that his efforts will shine new light into the murky waters of the Lyme controversy. Please join me in those prayers, and if Lyme disease becomes a topic in your state’s legislature, get informed and get involved!
1 “Ticked Off,” Jul./Aug. 2008 Court Report, and “Lyme Disease: Do You Know the Facts?” Sept./Oct. 2008 Court Report
|About the author
Rodger Sayre, MD, FAAFP, has been an HSLDA board member since 1997. He and his wife, Mary, have graduated 6 of their 11 children and continue to teach the rest at home in Pennsylvania. Dr. Sayre is certified as a Diplomat of the American Board of Family Medicine and is a Geisinger Medical Group associate with a busy practice in Tunkhannock.