Lyme disease sufferers find comfort in each other’s company
Photo by Brittany Soda/New Jersey Herald - Christa Degan, left, of Stillwater, and Stacey Cerbo, of Hampton, are seen Thursday, Dec. 20, at the New Jersey Herald office in Newton as they discuss their experiences about living with Lyme disease.
Photo by Brittany Soda/New Jersey Herald - Marty Theys, coordinator of the Lyme Disease Awareness Group, is seen Thursday, Dec. 20, at the New Jersey Herald office in Newton as he discusses experiences about living with Lyme disease.
By JESSICA MASULLI REYES
NEWTON — The story of Lyme disease often goes like this — get a tick bite, see a bull's eye, go to the doctor and be cured by antibiotics — but for some people the story can be very different.
These people, never finding a tick or developing a bull's eye rash, go year after year with unexplained, debilitating symptoms. These people are often misdiagnosed or even called crazy.
"If you don't fit the perfect clinical picture (for Lyme disease), then they don't know what to do with you," Christa Degan, of Stillwater, said.
Degan, a stay-at-home mother of three, started "not feeling right" in the summer of 2009. She had sudden-onset migraines, joint pain and flu-like symptoms that just would not go away. Her symptoms progressed to neurological issues, such as numbness, tingling and blurry vision.
Knowing something was wrong, Degan went to the emergency room, where they told her to get tested for multiple sclerosis, but the MRI and CAT scans disproved multiple sclerosis. She asked the doctor if it was possible that her symptoms were from Lyme disease, but she was dismissed. Instead, she was put on medication for anxiety, but again this was not the problem.
In 2010, she was finally diagnosed with Lyme disease. Lyme disease is a bacterial infection that is transmitted to humans from the bite of an infected tick, according to the Centers for Disease Control and Prevention. At first, flu-like symptoms occur, such as fever, headache and fatigue, but the real problems come if left untreated, when the infection can spread to joints, the heart and the nervous system, the CDC says.
Only about 70 percent of people get a bull's eye rash at the tick bite spot, the CDC reports.
A pamphlet from the Lyme Disease Association of Southeastern Pennsylvania explains that when Lyme disease is not properly treated, it can lead to serious symptoms of unrelenting fatigue, joint or muscle pain, vision or hearing abnormalities, numbness or tingling, facial paralysis, heart damage, psychological disturbances and stomach problems.
Degan, like her doctor, assumed that her new diagnosis would be quickly cured by six weeks on antibiotics. But, she wasn't cured and she continued to deal with the symptoms for another year.
"You are not only physically sick, but you are also advocating for yourself," Degan said. "You are just begging someone to believe you."
She found another infectious disease doctor, Dr. Max DeShaw, of Florham Park, and after six more months on antibiotics and three months of IV treatment, she is now in remission. Degan still has lingering symptoms, but considers herself 90 percent better, although reoccurrence is possible at any point.
Degan and others with similar stories have now joined a new Lyme Disease Support Group, which was started by Marty Theys, of Stillwater, in October and meets every third Thursday of the month in Newton. For these individuals, who often are not believed or are misdiagnosed, a support group provides a way to share knowledge, guide each other through the process and know that others are in the same position.
Degan first found similar support when she heard Stacey Cerbo,a stay-at-home mother of three boys from Hampton, talking about her symptoms of Lyme disease at the gym. The two became friends.
Cerbo said that in fall 2009 she began feeling sick, "like an 80-year-old woman run over by a bus, train and car." She was a self-described gym rat who was in the best shape of her life, but starting in 2009 she wasn't able to make it through one exercise class at the gym. Her elbows hurt, her ears rung and she had stomach problems.
After researching online, she told her doctor that she thought she was sufffering from Lyme disease, but she was dismissed, just like Degan. After an emergency room visit in December 2010 in which she tested negative for Lyme disease, things just worsened to stuttering, trouble signing her name and short-term memory loss.
A different test in January 2011 finally found she has Lyme disease.
"It was a very long, hard journey," she said. "It was a huge relief to be diagnosed, but I was ignorant about the disease. I thought I would be better in four weeks."
Cerbo was on antibiotics for two years until November and now is in remission. She sees herself as someone who can advocate and help others suffering from this disease, especially since the disease is often misunderstood as something far simpler.
"The science behind this disease is lacking," she said.
There is major controversy over Lyme disease between academic doctors and the doctors who treat patients, according to the Lyme Disease Association pamphlet. Some academic doctors have taken a position that the disease is easily cured with oral antibiotics, but doctors who see patients with this disease argue that it can be a serious illness with long-term symptoms. For this reason, some patients go years without diagnosis or are not treated for long enough.
Virginia Condit, a mother of five from Fredon, went nearly seven years without a diagnosis. She started feeling tired about nine years ago and, like the others, felt knee pain, headaches for months on end, arthritis and neurological problems.
"I was diagnosed with Fibromyalgia, chronic fatigue syndrome, borderline rheumatoid arthritis, raynaud's disease, restless leg syndrome," she explained, adding that she was put on all kinds of medications for these diseases she didn't have. "I was having awful pain and such fatigue that I couldn't get out of bed, and I have five children so you cannot do that with five children."
She then started hearing voices, having worsening eyesight and smelling smells that were not there.
"These are all parts of Lyme that nobody knows about and that general doctors do not believe," she said.
After her mother-in-law introduced her to Theys, Condit got tested again for Lyme disease and the test came back positive in 2010. She went on two months of antibiotics and two months of pulse therapy, which is when you go on and off antibiotics so that the Lyme can reoccur and then be attacked. She is in remission but still has several symptoms, although not as bad as before.
"You just have to say that this is my body now, and move on the best you can," she said.
She also now knows that four out of her five children have Lyme disease, which is not unheard of, considering that certain areas like New Jersey have much higher instances.
"It's a disease that I wish Sussex County would try to understand more," Theys said. "Every time you turn around up here there is Lyme."
Theys hopes that this new support group will help people like these three women manage the disease and will provide more awareness to the more debilitating side of the disease.
Condit encourages those experiencing weird symptoms to "keep getting tested." She finds support in this new group because those without Lyme disease have a hard time sympathizing.
"But, when you get together with somebody else who is going through it and getting it, you feel like you are less crazy," she said. "There is hope there. We just all have to stick together."
If you're interested
What: Lyme Disease Support Group
Where: First United Methodist Church, 111 Ryerson Ave., Newton
When: Every third Thursday of the month at 7 p.m.
For more information: Call Marty Theys at 201-213-4178
