In the apartment she shares with her daughter, Nancy Kos slides open a deep drawer to reveal squadrons of bottles and jars — antibiotics, homeopathic remedies, antiparasitic drugs — lined up in orderly multitude such that you can’t see the drawer’s bottom.
She opens a second drawer. More bottles, medicine, vials, jars, capsules.
The contents are for Anita. Anita Kos-Maracic, Nancy’s daughter, doesn’t open the drawer herself because she can’t. She’s too weak.
Anita’s so sick she often can’t talk or walk. The pain is unendurable.
“Some days she is sobbing and moaning from the time she wakes until she goes to bed,” says Nancy. In 2013, Anita was diagnosed with Lyme disease, the tick-borne infection about which so much controversy rages.
Lyme disease is a puzzle, whose symptoms range, depending on the source, from rash, fever, joint aches and temporary fatigue to (late stage) chronic arthritic pain, neurological dysfunction, facial paralysis, memory loss, heart palpitation and inflammation of the brain/spinal cord.
Lyme is now such a topical flashpoint in health policy that, a year ago, Canada passed legislation enforcing collaboration among levels of government, patients’ groups and the medical community to address timely diagnosis and treatment.
A year after that legislation, Anita, 47, and Nancy haven’t noticed any relief or improvement, either in treatment and testing access here or in monetary coverage.
Three years after diagnosis, Anita’s pain is worse than ever, she says; long before the positive diagnosis, which she had to go to the United States to get, Anita felt she had Lyme.
She’s been in debilitating pain more than 10 years, many of them spent not knowing what to call her suffering. In 2013, Nancy moved in, things got so bad.
The cost of Lyme has depleted them financially. “We’ve run through my retirement savings,” says Nancy, adding they pay their rent on credit cards.
Anita and Nancy are more desperate than ever.
Many who identify as Lyme sufferers, with or without a diagnosis, say the Canadian medical community’s official approach is limited, in contrast to the American one which sometimes countenances greater doses of antibiotic than allowed here.
The medical diagnostic test for Lyme in Canada is a rigorous, evidence-based one, says Dr. Fiona Smaill, McMaster professor of microbiology and infectious diseases. She appreciates the frustration of those who, though not diagnosed, feel they have Lyme.
“For many patients who present with poorly defined syndromes that don’t fit anywhere (as identifiable diseases), it’s distressing not to have a diagnosis,” she says.
“When a patient has non-specific symptoms the worst thing is to dismiss (their concerns) as ‘all in your head.'”
A point well taken by Anita; she says sometimes she’s treated as though she’s hypochondriac.
But tests must be administered in a systematic way, with tight controls and balances against other possibilities, says Smaill. Giving patients a diagnosis derived from a loosely controlled process runs the terrible risk of precluding other, perhaps correct diagnoses, like a different infection or auto-immune problem.
The issue with some American diagnostic facilities, she says, is that they perform poorly against the “gold” standard when it comes to Lyme and are associated with false positive results.
Nancy, who has compiled extensive files and research (her folders overflow), says many feel the Canadian system produces too many false negatives.
American Lyme specialist Dr. Maureen McShane calls the Canadian medical approach too conservative and tells me doctors here are sometimes discouraged from addressing Lyme boldly; they’re cold-shouldered by professional bodies if they do. But the U.S. case is also problematic, she adds. American treatment, testing and insurance coverage are scattershot; some treatment centres are unreliable.
“All we want is for the pain to stop,” says Anita, who’s been to innumerable specialists and is now considering bee venom.
“We’re losing hope,” says Nancy, who has already lost her husband and her son, both to brain aneurysms. Anita is all she has left. Anita calls her mother “her angel.”
But, she adds, “sometimes I ask God to take me. Just to live like this is horrible. I can’t work. I can’t have company over.
“I’m so worn out.”