Monika Gleason and Shayla DeRenne have plenty in common. They finish each other’s sentences, exchange texts at 3 a.m., share a love of horses and have trouble holding onto friends.
So they’ve become their own best friends, like twins really, who met and developed their bond under the unhappiest of circumstances: sickness and pain.
Both suffer from late-stage Lyme disease, an often misunderstood ailment that some call the invisible disease because it can take years to set in and even longer to be correctly diagnosed. Patients like Gleason and DeRenne, who are college-age and appear fit despite their illnesses, have a hard time getting others – especially their peers – to grasp how truly sick they are.
“Shayla lost her peer group,” said Anna Gleason, Monika’s mother, during an interview at their home in Folsom. “They ran away because they didn’t understand” why Shayla, 25, with severe leg pains and difficulty walking, was never able come out and party, Anna Gleason said.
“Just try to get 19-year-olds to understand,” Gleason said. “It’s next to impossible.”
Gleason, 21, was 19 when she began a daily regimen of antibiotic treatment and efforts to control the severe nausea and violent vomiting that could leave her unresponsive on the bathroom floor. Both Gleason and DeRenne suffer heart conditions as well, with their heart rates escalating to hazardous levels even in the middle of the night. Fainting also is not an uncommon occurrence.
“We are frequent fliers to the emergency room,” Gleason said.
The two join thousands of patients and supporters worldwide who share a deep frustration at the public and the health sector’s lack of awareness of Lyme disease.
As it does every year, “the Lyme world,” as activists call it, will stage a day of rallies and protests worldwide May 16-18, encouraging tick-borne infections “to be recognized as potentially serious diseases that require the urgent attention of governments and the medical community.”
Both Gleason and DeRenne were bitten by ticks as toddlers. At the time, Gleason’s family lived in Nebraska and her mother recalls ticks being so common she’d have to pick them off furniture. DeRenne’s parents recall giving her a bath at age 2 and extracting a tick from her hairline.
In the Sacramento County and Yolo County region, two ticks – the western black-legged tick and the Pacific Coast tick, or deer ticks – are primary suspects for spreading Lyme disease, said Luz Rodriguez of the Sacramento-Yolo Mosquito & Vector Control District.
Outdoor enthusiasts need to watch for ticks in tall grasses in certain areas where the district’s specialists go tick flagging – dragging trails with cotton flannel cloth, gathering ticks and returning to the lab to test the insects for disease. Some of these areas include Cache Creek in Yolo County and around the American River near Folsom at East Lake Natoma, Mississippi Bar, Negro Bar and Nimbus Dam, Rodriguez said.
The onset of symptoms can be vague. A reddish rash, sometimes resembling a bull’s eye, appears in only 35 to 60 percent of victims. Joint swelling appears in only 20 to 30 percent of patients. But experts recommend watching for symptoms such as flu-like illness, facial paralysis, palpitations or chest pain, extreme fatigue, stiff, aching neck, cognitive problems, muscle pain and twitching, and abdominal pain such as nausea and diarrhea.
Gleason, whose first misdiagnosis was lupus, said that, despite her flagging health, she still enjoys the outdoors. Before taking ill, she was a dancer and singer, but Lyme disease damaged her joints, and her energy lags after about three hours. She can no longer dance but works part-time with her mother at Summitview Child and Family Services, based in Placerville, which provides treatment to troubled teenage girls.
DeRenne, who was initially incorrectly told as a teen that she had rheumatoid arthritis, has a quarter horse named Fancy, who she’d love to ride. She did show-jumping and taught horseback riding, and her aspirations include running a high-end stable. But her leg pain is so fierce it causes seizures.
Gleason and DeRenne’s shared experience of waiting years for an accurate diagnosis mirrors that of many Lyme disease sufferers. The severity of chronic Lyme disease is highly debated. A series of long-lasting symptoms can surface years after patients come into contact with a tick carrying the bacterium Borrelia burgdorferi.
Delays between infection and the onset of serious symptoms add to the medical community’s uncertainty over how to treat Lyme disease.
Often, the disease mimics multiple sclerosis, with aching joints, headaches and indescribable fatigue. In all, Lyme disease vexes physicians because it is said to have symptoms similar to some 200 different diseases.
The symptoms can be isolating, leaving patients physically and, sometimes, emotionally debilitated and without established medical treatment agreed upon by such leading clearinghouses of health information as the Centers for Disease Control and Prevention and the National Institutes of Health.
Because there is little agreement on the accuracy of diagnosis and severity of the disease, patients and their families often end up with little insurance coverage for Lyme disease. That means they must pick up some of the treatment costs, leading many families to bankruptcy, Gleason said.
Anna Gleason, who is an advocate for awareness with an El Dorado County group called Lyme Junction, recently wore lime green nail polish, a lime green shirt and a plastic lime green support bracelet. She recommends people watch a video called “Under Our Skin” to gain a better understanding of the disease.
Although Gleason and DeRenne were willing to get together recently to share their stories, they are not keen on joining support or awareness groups. There, they find few people their age to whom they can relate. Also, they pointed out, it can get pretty depressing to listen to everyone unpack their medical woes.
“We can totally lean on each other,” Gleason said.
“We can even each other out,” DeRenne said. “Obviously, we wish we didn’t have this in common, but at the same time, our friendship is like a blessing.”