1 woman’s struggle: ‘I just want to get my story out there and really hope that it can help bring awareness to this disease’
26-year-old Megan Crist of Niantic was forced to have a pacemaker after giving birth to her son Haydn Crist, 9 months, because of the effects of Lyme disease she believes she contracted from a tick bite in 2007.
NIANTIC — When Megan (Noska) Crist began experiencing dizziness, shortness of breath, chest pain, migraines and a variety of other symptoms in 2011, the 26-year-old, who was expecting a baby boy at the time with her husband, Devin, thought she was just having pregnancy complications.
“I thought I was just having the worst pregnancy ever,” Crist, a native of Browerville, Minn., said. “Some women just have difficult pregnancies.”
A self-proclaimed “simple girl,” Crist was used to running marathons, studying molecular biology at Millikin University in the hopes of becoming a doctor and serving in the Army National Guard, so the symptoms she was experiencing, which progressed to frequent black-outs further along in her pregnancy, were alien to her.
“I ended up being sent to the (Decatur Memorial Hospital) emergency room by my obstetrician in April 2012,” she recalled, “and after wearing a heart monitor for 24 hours, I was told I had a third-degree atrioventricular block,” a medical condition in which the impulse generated in the SA node — a specialized heart tissue that controls the heart beat — does not translate from the atria of the heart to the ventricles, she said.
Despite her diagnosis, Crist said doctors thought her condition would go away after she had her son, Haydn, in May, so she was sent home. Three weeks after giving birth, however, the AV block was still there and her symptoms were worsening, and in August 2012, she received some shocking news when she was admitted to the emergency room at St. Mary’s Hospital.
“After examining me and admitting me to the hospital, the doctors told me that, at age 26, I would need a pacemaker to live,” she said, noting that although the news was devastating, it was also a relief. “My heart had been periodically pausing or stopping for five to seven seconds at a time, which was what was causing me to not be able to breathe, to have chest pain and to pass out. I knew something had to be done, and I was just hopeful that once I got the pacemaker, the pain and fatigue and symptoms I had during my pregnancy would go away.”
Crist prepared to receive “Sparky,” her pacemaker, on Sept. 1. In the meantime, she met cardiologist Dr. Manohar Kola, someone who became “my biggest advocate,” she said.
“Before my surgery, he asked me if I had ever been bit by a tick, had a rash or experienced achy joints,” she said, “and it hit me that, yes, back in the fall of 2007 when I was in basic training, I had a large rash on my left leg that kept spreading. I ended up having a couple days of antibiotics (to treat the rash), but then I also started getting dizzy spells and migraines and I felt like I was more tired.”
Crist said she didn’t think much of the symptoms because, after going to the doctor a second time, she was told that she was OK. She said the symptoms were “pretty much kept at bay” until she became pregnant in 2011.
After receiving her pacemaker and returning to her Niantic home, Crist was optimistic her life would return to normal, but during her recovery, her limbs began tingling and her overall sense of fatigue did not dissipate. She also began feeling more chest pain and achiness in her joints, in addition to blurred vision.
“I started feeling like I was losing it,” she said. “I couldn’t do my school work or stay awake to study for tests, and some days I felt like I was going to pass out just doing the dishes.”
After countless emergency room visits and months spent calling doctors and nurses, pleading for them to help her, Dr. Kola came to Crist’s rescue.
“He was my guardian angel,” recalled Crist. “He told me he thought I may have Lyme disease, and he ended up referring me to a friend of his who was doing a lot of Lyme disease research in Washington, D.C.”
An illness transmitted to humans through deer tick bites, Lyme disease is often characterized by viral symptoms in the early stages, said Dr. Craig Conover, a state epidemiologist at the Illinois Department of Public Health.
“People with Lyme disease usually get a rash called erythema migrans, as well as viral symptoms like fatigue, headaches, fever and muscle and joint aches,” he said. “If the disease goes untreated, however, the disease, which starts out in a localized area, then begins to spread from the (tick) bite site to the blood stream and organs and can cause neurological symptoms, like facial paralysis, cardiac symptoms, such as heart arrhythmias, and arthritis.”
Although Crist had tested negative for Lyme disease 10 times in Illinois, after she underwent more tests in Washington, D.C., and the labs were sent to California, she received the answer she had been awaiting.
“The test came back positive for chronic Lyme disease,” she said.
Unfortunately, that was not the end of Crist’s problems. After receiving four weeks of intravenous antibiotics at St. Mary’s in November 2012, her symptoms still persisted, and many doctors were unable to do anything more for her.
“The CDC (Centers for Disease Control and Prevention) only calls for four weeks of antibiotic treatment for Lyme disease, but I wasn’t getting better after that, so I had to look for a doctor who would give me more treatment,” said Crist.
After a long search, Crist found both Dr. Joseph Jemseck, a Lyme disease specialist in Washington, D.C., and Dr. Arden Beachy, a doctor in her hometown of Browerville, who were willing to “think outside the box” and pursue other types of treatment options to help her get better.
“I started more IV antibiotics in December, and I am currently on my third month of that,” she said earlier this month, noting that she will likely receive seven to nine months of IV antibiotic treatment. “I also have a port and pic line and take about 70 pills each day, which include antibiotics, probiotics and supplements.”
While Crist acknowledges she still has difficult and painful days, she believes she is now on the road to recovery.
“I’m getting treatment in both Minnesota and Washington, D.C., and I know I’m on a positive path,” she said, “but now the biggest problem is insurance and the cost of the treatment.”
Covered by both Tricare insurance through the military and Blue Cross Blue Shield through her husband, Crist said due to her doctors not abiding by the standard CDC treatment protocol for Lyme disease, in addition to Blue Cross Blue Shield not wanting to cover the treatment because they believe the disease was incurred while Crist was still serving in the military, most of the treatment is being paid for out-of-pocket.
“My IV treatment is costing $4,000 to $7,000 a month out of pocket, not including the supplies to maintain my central line, my oral antibiotics, supplements, labs or the out-of-state trips to Minnesota and Washington, D.C., I have to take every four to six weeks,” she said. “Devin and I both deployed in 2008 and 2009 to Afghanistan, so we’re paying our bills from our deployment savings and whatever we can, but the money is running out.”
Although Crist is optimistic that her military insurance will eventually begin to cover some of the costs once they receive all of her medical documentation and determine the Lyme disease was contracted while she was in basic training, Crist’s family hoped to help cover some of the costs by holding a benefit for her Saturday at the American Legion in Lovington.
While she knows she has a long road ahead, Crist said she is optimistic for the future and hopes the benefit helps others, as well.
“I just want to get my story out there and really hope that it can help bring awareness to this disease,” she said. “It’s so important to understand the disease and realize how serious it is, and I just want to be there for others who may have it and help them through it.”
Contact Harbour at nharbour@herald-review.com or 217-421-796
