Invisible Illness: Living With Lyme Disease In Oregon
A serious illness can be life-changing. It often leads to doctors and specialists, who evaluate, test and diagnose. Treatment becomes the means to recovery. But what if a patient's condition is rare to a geographic region? In part two of our reports on “Invisible Illness”, KLCC’s Tiffany Eckert speaks to one Oregon woman about her plight to discover what’s been ailing her.
For thirty years, Deb Elder has been hurting. She says her chronic pain started after a traumatic accident. Then she was told she had Fibromyalgia. Deb describes her symptoms:
Elder: “Walking rigor mortis. It feels like your body’s turning into stone.”
The stiff aches were constant and progressive. She started going to doctors in California and Oregon and got nowhere.
Elder: “I personally have been seen by 39 different physicians and treated with 63 pharmaceutical medications. Spent 12 years on methadone with chronic pain. “
A few years ago, a friend told Deb about Lyme Disease. As she began to research the possibility, her symptoms seemed to fit. But, like most people, she thought the only way to catch Lyme was from a tick bite.
Elder: “I don’t have a tick bite in my history.
If she lived somewhere else, say the Northeast where Lyme Disease was first discovered, a diagnosis might have been easier to get. But, Deb says M.D.s in Oregon aren’t “Lyme literate.”
John David Wilson is a doctor at The Travel Clinic in Eugene. He works in prevention—particularly against illnesses travelers might pick up overseas like Milaria, hepatitis, yellow fever. Dr. Wilson says invisible illnesses challenge most physicians.
Dr. Wilson:“Doctors veer away from this sort of thing because it’s not easy, it’s not well defined, you have to take time. The business structure of medicine is becoming less and less friendly to people who take time, but that’s what’s needed.”
In 2012, Deb Elder spent 8 months bed bound from debilitating symptoms. When she was strong enough to travel, she went to IgeneX Labs in Palo Alto. It specializes in Lyme Disease diagnosis. They amplified a few copies of her DNA and documented segments of the Lyme Borrelia bacteria. That finally confirmed it: Deb Elder has Lyme Disease.
Elder: “I believe I was born with it. Congenital transmission of Lyme happens where the mother has Lyme and it's passed through the womb and in breast milk. We also currently suspect that it’s an STD that is passed similar to Syphilis.”
Like many who suffer from rare or invisible illnesses, Deb has become an amateur authority. She has 4,300 Facebook friends on her Lyme Disease Eugene Oregon support group page. She carries around stacks of brochures on the disease. She's sort of obsessed.
Elder: "Some of the doctors on the Infectious Disease Society of America or IDSA call us Lyme loonies. And I kinda embrace that because I am fanatical about this.
The medical community is in agreement that antibiotics will help Lyme patients get better quickly. However, once the infection has progressed to the second or tertiary stages, Deb says Oregon docs are reticent to administer antibiotics long-term. Like some other Lyme patients, she is now using bee venom as an alternative treatment.
A quick search of Oregon physicians who treat Lyme Disease leads to a long list of psychiatrists.
Dr. Wilson points out when people with chronic, debilitating symptoms can’t find treatment, they can get depressed. But…
Dr. Wilson: “The other way around, depression can cause pain all over. And sometimes you don’t know which came first.”
People with rare or invisible illness are used to being called 'crazy.' They say it comes with the territory.
Despite debilitating symptoms—some patients still advocate, demonstrate, even attempt to legislate changes in the health care system. Deb Elder believes outreach and activism are necessary to change the way Oregonians think about the invisible illness called Lyme Disease.
Elder: “The fact that our medical community is not actively helping to treat these infectious agents really outrages me."
The importance of good communication for doctors and patients: