For chronic Lyme patients, every day can be a struggle
It was bad enough that Amy Wiester of Bell Township contracted Lyme disease at age 6 after suffering a tick bite at her family’s farm.
But Wiester, 36, was bitten twice more by Lyme-carrying ticks, in 2004 and 2018.
The disease — and the co-infections that frequently accompany it — have dominated the past three decades of her life.
“I never really had treatment (for the initial infection),” Wiester said. “I was one of five children, and I was the ‘sick kid.’ ”
Her worst symptoms were similar to those of a stroke.
“I had neurological Lyme,” she said. “I would have numbness that would go up my arm and spread to my lips, nose and eyebrow. I would always tell my doctors I had a tick bite and a bull’s-eye when I was little, and it was just never addressed.”
While attending college in 2004 at Penn State, Wiester was bitten again and developed the classic bull’s-eye rash. She was placed on a 21-day antibiotic cycle, but it did not help.
“Things started to get worse around then,” she said. “One morning I lost my vision around 6 a.m. And I had nausea for about three years straight.”
In 2012, Wiester began seeing a nurse-practitioner who specialized in Lyme cases and finally received a Lyme diagnosis.
“We also found out I had seven co-infections,” she said. “I was in treatment for about five years, and I was almost in remission.”
In May 2018, Wiester — who lives at the edge of a large forested area with plenty of places for ticks to thrive — was bitten again, and “it has full-blown wrecked me,” she said.
“I had a whole plethora of issues: dizziness, my heart would pound just from getting up and down, and I had full-body pain that was so bad I thought I would need opioids,” she said.
Wiester began taking intravenous antibiotics and today has a peripherally inserted central catheter to administer medication, but her symptoms have progressed to a point where it is difficult for her live a normal life, as well as care for her 5-year-old son, who has also begun to present symptoms of both Lyme and some of its co-infections.
“Being debilitated myself most days, and now with him down-sliding, it’s giving me the will to do what it takes to get better, to be able to give him a fighting chance,” she said.
In seeking support, Wiester came across the PA Lyme Resource Network where she met Bill Moore, the network’s vice president.
Moore believes he contracted Lyme disease in 2009 but had a similar problem in getting a proper diagnosis.
“Twenty-three doctors later, I got a diagnosis in 2012,” Moore said. “Things started with symptoms you could chalk up to something else, like a mild flu. I think doctors are getting more knowledgeable, but almost none of them thought it was Lyme.”
Moore said the network exists to guide patients “toward more Lyme-aware doctors,” so that situations like his and Wiester’s are not as common.
Wiester drives four hours to see a doctor she feels comfortable with.
“With the exception of a few practitioners that are helping more of the less-severe cases in this area, you have to travel far,” she said.
An affordable solution
Wiester’s friend Kelly Smith said she is a “Lyme warrior.”
“Amy always managed to push through the days with little complaints,” Smith said. “That all changed when she was bit in the summer of 2018.”
In order to help Wiester with her substantial medical bills — paid largely out-of-pocket — Smith is organizing a Sept. 22 spaghetti dinner at the Parks Township Fire Hall in Armstrong County.
The prevalence of Lyme in Pennsylvania, and the high cost of combating it, has gotten the attention of state lawmakers.
The state House passed House Bill 629 in April. Currently in the Senate’s Banking and Insurance Committee, the bill would mandate insurance coverage for “long-term antibiotic and antimicrobial therapy for a patient with Lyme disease and related tick-borne illnesses when determined by a health care practitioner to be medically necessary … after making a thorough evaluation of the patient’s symptoms, diagnostic test results or response to treatment.”
It would also protect doctors who want Lyme patients on long-term antibiotics, a move that Moore said is critical when it comes to treating the disease.
“Doctors will prescribe a 21-day course of antibiotics,” Moore said. “But often they won’t prescribe a longer course, and there have been doctors in New York disciplined for doing that.”
Long-term antibiotic use does pose a risk, Moore said, “but Lyme is a complex illness, so why deny a person that treatment and allow them to develop a chronic illness?”
Wiester is seeking a potentially permanent solution overseas.
“I want to go to Germany for a hyperthermia treatment that just doesn’t have the support behind it in the U.S.,” she said.
The St. George Hospital, run by Dr. Friedrich Douwes in Bad Aibling, Germany, offers treatment using a combination of antibiotics and hyperthermia, a process by which a person’s body is gradually warmed to 107 degrees Fahrenheit.
The treatment was initially being used to treat and destroy cancer cells, according to the hospital’s website. But when it was used to treat cancer in two women who were also suffering from chronic Lyme disease, Douwes discovered that their Lyme symptoms also disappeared.
According to the website, Douwes has treated more than 800 Lyme patients and seen dramatic improvement. Borrelia burgdorferi, the bacterial cause of Lyme disease, cannot survive for long at temperatures above 106.88 degrees Fahrenheit.
Douwes notes, however, that Lyme is a complex disease, and while his focus is on killing the Borrelia spirochetes that cause it, hyperthermia doesn’t address the many co-infections that often go hand-in-hand with a Lyme diagnosis.
“I’ve been on antibiotics, and I’ll have to come home and still undergo treatment,” Wiester said. “But right now I’m so ill that I can’t function, and hopefully it can help with that.”
When it comes to preventing tick bites, the first thing to know is that Pennsylvania has had the most Lyme cases in the country for the past seven consecutive years, Moore said.
In addition, Westmoreland County had the third-highest number of Lyme incidents in the state in 2016, with 577 cases reported.
“Prevention is the best way to deal with this, and for people who’ve been bitten, it’s even more important,” Moore said.
Moore recommended applying permethrin to clothing if venturing into an area where ticks might live, or wearing DEET-based repellent.
Keeping your yard well-landscaped is also a good preventive measure.
“A tick needs moisture to survive, and it wants to live in your leaf litter,” Moore said. “The shorter you can keep your lawn and the more sunlight you have, the less likely you’re creating a good habitat for ticks.”
For people who live near a tree line or wooded area, Moore said the network recommends treating the tree line with a tick killer twice per year, or using cedar chips — a natural repellent — as mulch.
For the first time this year, the state is offering free tick testing at East Stroudsburg University. The Pennsylvania Tick Research Lab will test ticks for the top four pathogens relevant to the species that is submitted. Additional testing is available but costs between $50 and $100 for Pennsylvania residents.
If someone is bitten by a tick, they can place it in a plastic bag, send it to the lab and receive results within three days.
So far, the lab has tested 9,032 Pennsylvania ticks, and nearly 35 percent have tested positive for some type of infection vector, according to TickLab.org.
Moore strongly recommended that anyone who finds a tick on them send it for testing.
“It’s easier to test a tick than a person,” he said. “Tick testing is 99.9 percent accurate.”
The larger focus, he said, should be on developing a cure.
“The bottom line is, whatever the treatment, we need more research,” he said. “For the 75 percent of people who do well on a short course of antibiotics, that’s great. But for the 25 percent of us who don’t, we need a lot more research.”
Patrick Varine is a Tribune-Review staff writer. You can contact Patrick at 724-850-2862, [email protected] or via Twitter .