Lyme disease
Julee Glaub Weems with her Little Windows bandmate and husband Mark Weems, performing at the Swannanoa Gathering.

Julee Glaub Weems’s life used to be full of music, running, hiking and cycling. Today, it’s consumed by antibiotics, herbal remedies, acupuncture, doctors visits and endless research into alternative treatments for a disease that got a six-year head start on treatment.

In 2011, six months after giving birth to her son Declan, Julee noticed that her left thumb had stiffened up. It wasn’t long before her entire hand started going stiff and exhibiting tremors. Alarming for anyone, but especially to a professional musician who makes her living playing guitar, Irish drum (bodhrán) and flute.

“At first they told me I had MS,” says Julee, who lives in Durham and works part-time in Great Outdoor Provision Co.’s Chapel Hill store. Subsequent trips to four neurologists yielded a range of other diagnoses, from Parkinson’s disease and a brain tumor, to poisoning by toxic metals. Each new diagnosis brought with it treatments that failed to calm her tremors, ease her headaches, and ease her muscle pain.

Finally, in March of last year she convinced her general practitioner to test for Lyme’s Disease. The test by the Centers for Disease Control and Prevention came back positive. So did two subsequent the tests, by California-based IGeneX and Galaxy Labs in Morrisville, commonly used to test for Lyme.

A diagnosis — now what? 

After six years of uncertainty and false diagnoses, Julee finally had a diagnosis. The problem: Lyme, a bacterial infection transmitted by deer ticks, is most successfully treated with antibiotics when caught early. Because deer ticks are considerably less common in the Southeast than they are in New England, the Mid-Atlantic and the upper Midwest, the medical community has been slow to test for the disease in this region.

Part of the problem, too, says, is that Lyme disease can be difficult to diagnose in general. In about three quarters of cases, Lyme first presents itself as a rash. It’s often assumed that the rash will morph into a bull’s eye, but that only happens in about 15 percent of cases. Because Julee lived in Durham, in North Carolina, where Lyme-bearing deer ticks weren’t thought to exist, it wasn’t considered a prime suspect, especially since symptoms typically start appearing three to 30 days after a tick bite.

Typically, but not always.

A stint in Connecticut 

Julee grew up in Charlotte and attended Wake Forest University, where she majored in music. A love of Irish music took her to Dublin for seven years after graduation. When she returned to North Carolina, to Durham, in 1992, she went to work for Great Outdoor Provision’s Cameron Village store.

She continued to make music part-time while moving up the Great Outdoor ladder. She became a key player in helping Great Outdoor open new stores, and managed the outfitter’s store in Durham’s Northgate Mall before deciding to pursue music full-time in 1999. To do so, she decided she needed to be closer to the band she was playing with, which was in the New York area. So she moved to rural Connecticut, which is the epicenter of Lyme disease. The first outbreak was reported in 1975 near the Connecticut town of Old Lyme. It’s been a hotspot for the disease ever since.

And while the disease usually shows within 30 days of a bite, it can also remain dormant for years, triggered later by a trauma to the body. Such as childbirth.

A life altered by Lyme

The disease has had a profound effect on Julee’s life. She still performs occasionally, usually with her husband Mark as the traditional music duo Little Windows, but only sings. She also continues to teach through the school she and husband Mark founded, the North Carolina School of Traditional Music, though again, her teaching is limited to vocals.

She hasn’t been able to play a musical instrument for more than a year; now, when she performs she grips both hands to minimize the tremors. She used to be a marathon runner (including a 4:34 finish at the Dublin Marathon), and while she still hikes and rides her bike, “my stamina isn’t what is used to be. Lyme is exhausting.” (Though she still manages to run the Traditional Song Week, which she started a decade ago at the annual Swananoa Gathering, series of week-long folk music and dance festivals held each summer at Warren Wilson College.)

The hiking and cycling might not happen, either, were it not for Declan, now 7.

“We play baseball and kickball, and I went sledding on the biggest snow hill in our neighborhood,” she says, smiling. “I have a 7-year-old I want to enjoy growing up with.”

Treatment: two months at a time

Time lost to a delayed diagnosis has meant that Julee is playing catchup with the various treatment strategies currently available. She recently had to take a break from a popular antibiotic treatment because it was causing problems for her pancreas. Right now, she’s trying an herbal treatment including tinctures of Cumanda, Samento and Banderol. “You need to drink 4 quarts of water a day,” says Julee, or about twice the oft-cited recommendation of drinking 8, 8-ounce glasses of water a daily. She also recently discovered she has access to a Rife machine, which, some believe, can kill harmful cells via an electromagnetic pulse, as well as an infrared sauna, which uses light to create heat and has shown early promise in being able to treat a range of chronic health problems, from high blood pressure to dementia.

“My doctors say we stick with a treatment for two months, and if we don’t see any signs of improvement, we move on.”

A particularly insidious side effect of Lyme’s disease is insomnia, “which,” Julee notes, “doesn’t help with healing.” Other common symptoms include memory loss, mood changes, and inflammation of the joints.

Worse, perhaps, is that because the Centers for Disease Control and Prevention long denied the existence of Lyme disease in North Carolina, most insurance companies — including Julee’s — still don’t cover treatment. To help cover her medical debts, Julee’s friends have created a YouCaring page, with the goal of raising $30,000.

“Both Mark and Julee have given so much to the music community,” Sarah Borders of Mountain Home Music wrote on Julee’s YouCaring page, “we thought you would like to be given the opportunity to give back.”

A Lyme-free future

When Julee talks of the future, she talks of a future with lots of hiking and cylcing, of not just singing but playing her instruments as well. Despite having the disease for seven years, she talks optimistically of a future free of Lyme.

Until then, the hope of treatment and the prospect of playing more with Declan keep her upbeat and motivated. She also finds motivation through the folks who walk in the door at Great Outdoor Provision Co.

“I love helping people going on an adventure,” she says. “People are so gracious, so compassionate. They’ll ask, ‘Are you OK?’” when they notice the tremors. I don’t want to scare them about Lyme,” she says, “but I do feel it’s important for them to know.”

She doesn’t want the prospect of Lyme disease keep people from getting out into the woods. “Hikers should be careful,” she says, “not fearful. I still hike and camp.”

As part of her information campaign, she cites the usual advice: If you pluck a tick from your skin, save it; watch for a rash — if one develops, go to your doctor immediately.” She pauses, then adds, “And go to a vet and get tested.”

A vet?

“Vets are quick, without a second thought, to test ticks for the presence of Lyme disease,” she says.

* * *

Avoiding Lyme Disease

To avoid Lyme Disease, you need to avoid ticks. Some recommendations from the Centers for Disease Control and Prevention:

  • Be especially vigilant in areas where ticks are more prevalent: moist and humid environments, particularly in and near wooded or grassy areas.
  • Repel ticks on skin and clothing. Use repellent that contains 20 percent or more DEET, picaridin, or IR3535 on exposed skin for protection that lasts several hours.
  • Perform rigorous tick checks, paying close attention to: Under the arms, in and around the ears, inside the belly button, back of the knees, in and around all head and body hair, between the legs, around the waist.
  • Remove ticks quickly and correctly. Use fine-tipped tweezers. If a tick is attached to your skin for less than 24 hours, your chance of getting Lyme disease is extremely small; however, other diseases may be transmitted more quickly.
  • Be alert for fever or rash. Rashes tend to spread slowly and can spread to up to 12 inches in diameter. In only a small percentage of cases does the classic “bull’s-eye” rash appear.

Act quickly if …

In addition to a fever or rash (which could develop 3 to 30 days after being bitten), the Mayo Clinic advises to be on the lookout for:

  • Flu-like symptoms. Fever, chills, fatigue, body aches and a headache may accompany the rash.
  • Joint pain
  • Neurological problems, which may not develop for weeks, months or years after infection.
  • Possible nausea and vomiting
  • Less-common signs include heart problems, eye inflammation, liver inflammation, severe fatigue.

For more information, visit the CDC website, here, the Mayo Clinic here.

Help Julee

As Julee mentioned, insurance does not cover most treatment for Lyme disease, treatment that can be extremely expensive. To help her pay for her battle against Lyme, friends have established a YouCaring page on her behalf. You can contribute to help Julee by going here.