For the better part of a year, Torrin Acker’s daily routine involved swallowing some 30 medications — ammunition to fight the devastating effects of Lyme disease-related ailments.
The then-16-year-old’s war chest included antibiotics; drugs to combat pain, migraines, seizures, vertigo and sleeplessness; and vitamins, minerals and herbs to boost his depleted immune system.
The red-headed, 6-foot-3, Ashland teen was flat on his back for months, fighting off not only Lyme disease but other infections and viruses, mother Kasey Acker says. It was heartbreaking to watch her only child’s life “slipping away each day,” she says.
Now Torrin is getting his life back.
Torrin’s condition has improved dramatically through aggressive antibiotic treatments, vitamin therapies and detoxification as prescribed by a team of doctors, including the Ackers' family physician and doctors in Medford and the San Francisco Bay Area who are familiar with Lyme disease.
Though there is controversy over the prolonged use of antibiotics in the treatment of Lyme disease — which can sometimes do more harm than good — Kasey Acker says 85 percent of Torrin's symptoms have disappeared. One of two co-infections has been eradicated, and he has recovered from the viruses. The results of an 18-week culture test later this month will let them know whether the Lyme disease is dead.
Kasey Acker says they are finally “on the downhill slope of what’s been an uphill battle” for six years.
She suspects that Torrin was bit by a tick during a campout in the Willamette Valley. Although he did not exhibit the typical red bull’s-eye rash, Kasey now recognizes other symptoms often associated with infected tick bites: headaches, fever, fatigue and muscle pain.
Ticks thrive in the same areas where Southern Oregonians love to hike, hunt, fish and garden, and where pets, deer and other creatures love to roam.
Ticks carry not only Lyme but a smorgasbord of other infectious diseases, according to Sharon Lee, a retired registered nurse who is co-founder and co-leader of the Southern Oregon Lyme Disease Support Group.
Lee is on a mission to dispel a myth that Lyme disease does not exist in Oregon.
Lee and her co-leader, Judi Johnston, are in remission after battling multiple tick-borne infections over several decades.
The support group they established in 2009 grew to 100 members in 2011. By 2015, membership had doubled.
Tick bites are “100 percent” preventable, Lee says, but they often go undetected. Most humans are bit by immature ticks or nymphs. Less than two millimeters in size, they are difficult to see, which is why they often go unnoticed during their 36-hour feeding time.
Many times, it’s not until weeks or even months of a "flu that won’t go way,” or incessant headaches and joint pain, that a victim will seek medical attention.
And, in many cases, it may be years before a patient receives a Lyme disease diagnosis. The Ackers saw nearly 20 doctors before it was confirmed that Torrin had Lyme.
Typical short-term symptoms are characteristic of the flu. Most patients are treated after they present a distinctive “bull's-eye” rash that appears a day to a month after the tick bite. The rash isn’t always ring-shaped and some people get no rash at all. At this stage, doctors prescribe a 30-day regimen of antibiotics.
Because of their corkscrew shape, Lyme bacteria (Borrelia burgdorferi) drill through tissue and spread throughout the body so fast that the bacteria can appear in spinal fluid within three weeks of a tick bite.
If left untreated, Lyme disease can spread to the heart, nervous system and joints.
The body stages an all-out war against armies of microscopic, yet obstinate Lyme bacteria that morph and invade organs, cells and tissues.
“It’s almost like they have a mind of their own,” says Lee.
In addition, the organisms create a bio-film that shields them, she says.
Long-term Lyme sufferers can have a huge list of varied symptoms, including meningitis, brain inflammation, muscle twitching, chronic joint pain, arthritis and even memory loss. Lyme can be misdiagnosed as chronic fatigue syndrome, lupus, neuropathy, multiple sclerosis, ALS or Parkinson’s.
Lyme is the “great imitator,” says Dr. Cory Tichauer, a Medford naturopathic physician and Southern Oregon’s only Lyme specialist. “Lyme is greatly misunderstood, and often misdiagnosed.”
He has treated some 500 Lyme sufferers in recent years, and is booked out until April.
Unfortunately, by the time most patients come to see him, their illness is chronic, he says. “It is a complex, multi-symptom disease.”
Studies by the National Institutes of Health show that most Lyme disease patients recover when treated with a few weeks of oral antibiotics. But for those who've had the disease for more then six months, or in whom the disease has invaded joints and tissues, other therapies must be implemented, Tichauer says.
Lyme awareness advocates such as Lee and Theresa Denham, of the Oregon Lyme Network, believe that patients have slipped through the cracks because of outdated field studies regarding the incidence of ticks, underreporting of tick bites, unreliable diagnostic testing and the debate between the Infectious Disease Society of America and the International Lyme and Associated Diseases Society on standards of care.
Britta Nosbaum, a Medford longtime Lyme sufferer, blames her delayed diagnosis on “Oregon’s fractured medical system.”
“I haven’t had a normal day in two years,” she says. “If Lyme is not real, why do I have a real disease?”
Although she feels she is “screaming in the wind,” Nosbaum and her husband, Mike, continue to declare that Lyme does indeed exist in Oregon.
“The divide in the medical community is the biggest challenge,” says Mike Nosbaum, who paddled rivers and streams from Applegate Lake to the Columbia River last spring to bring awareness to the Lyme fight.
Last year, Lyme awareness advocates presented Senate Bill 916 to the Oregon Legislature. They argued for changes in the state’s clinical guidelines for treating Lyme disease. The bill passed the Senate but died in the House Health Committee.
Lyme awareness advocates also say that because the medical community believes Lyme is rare in Oregon, insurance coverage is either non-existent or a mixed bag at best.
Kasey Acker says that as a single parent, she could not afford Torrin’s medical expenses on her own. Charitable organizations, generous friends and the “kindness of strangers” have helped make Torrin’s recovery possible, she says.
Many families like Olivia Christensen’s have opted for treatment at a clinic in Germany that alleges a 99 percent success rate, even though they must pay out-of-pocket and stage fundraisers.
After missing seventh- and eighth-grade at Hanby Middle School with symptoms much like Torrin’s, Olivia spent last spring and summer in Germany. The Gold Hill teen is now a healthy freshman enjoying life at Crater High School.
Olivia’s story has inspired a half dozen other Rogue Valley residents to seek similar treatment.
“Germany is not the absolute answer for everyone,” says Olivia’s mother, Crystal Christensen. “But, we would not give up until we found an answer. I would have gone to the moon and back.”
She quickly adds that the trip to Germany would not have been possible without community support.
Olivia was bit by a tick so tiny that her mother thought it was a mole or freckle on her ear until it fell off.
Crystal is now vigilant in taking preventive measures and warning other parents not to allow their children to jump and wrestle in piles of leaves or play in the woods without spray or protective clothing.
While there is no cure yet for Lyme, Lee tells longtime Lyme sufferers that there is a 90 to 95 percent recovery rate from the chronic symptoms.
She attests to her own experience, and says she now feels better than she has in years.
Nosbaum also feels that after a three-year battle, the worst is over.
“There are still good and bad days,” she says. “But, there are more OK days. It’s a long (healing) process, but I choose to focus on hope.”
“The treatments are difficult, and long-term,” says Tichauer. “In steps, in stages, patients do get better.”
For more information, contact Sharon Lee at 541-879-0222 or 408-807-6979.
Reach Grants Pass freelance writer Tammy Asnicar at firstname.lastname@example.org.
Lyme Disease Cases in 2014 | HealthGrove