Jen Graber's 8-year-old son Kevin is in constant pain. Kevin is in so much pain that he needs to lay down on his back when doing homework. He has to stand while he eats lunch -- it hurts too much for him to even sit. Worse yet, the pain Kevin is inflicted with is from a disease many doctors say doesn't even exist.
Chronic Lyme Disease (CLD) is the controversial disease which comes from long-term untreated exposure to the bacteria Borrelia burgdorferi. Suffers of CLD report constant severe pain and discomfort, stiffness in joints and muscles, constant fatigue and lethargy, memory loss and trouble concentrating as well as a host of other symptoms.
There is currently a great debate in the medical community over CLD. Many health professionals do not even acknowledge the existence of the disease. The CDC's stance on it is that it does not exist; instead it says the symptoms are simply from other conditions like rheumatism, arthritis or even multiple sclerosis. Due to this, many doctors are hesitant to test for Lyme disease at all.
At a Lyme Disease support group in Middletown, several parents called to mind stories of hitting the proverbial "brick wall" of the medical establishment's skepticism.
"The doctors basically told me I was crazy and to stop (pursuing a Lyme disease test)," said Donna Darroch.
Darroch's daughter, Danielle, contracted Lyme disease at an early age. It's believed that the disease can be transmitted through bodily fluids -- including breast milk.
Danielle's condition was unknown at the time. It aggressively ravaged her body. She had recieved three spinal taps by the age of five. After Darroch's persistence, she finally convinced doctors to test her daughter for Lyme disease.
Those who claim to suffer from CLD often struggle to find doctors who are willing to treat the illness. The common treatment for the disease is long and potentially dangerous treatments of antibiotics.
The treatment itself is fraught with controversy -- and occasional death. A 2000 article from the Oxford Journal reported of a 30-year-old woman who died from a 27-month long intravenous CLD treatment of cefotaxime, a powerful antibiotic.
Despite the controversy, sufferers claim the treatments are the only thing that gets them "back to normal."
"I was in the hospital at the time. The doctors said what I had was meningitis. They put me on (an antibiotic treatment) just as a precaution … the same my daughter had been on before, and it was like someone turned on the TV. I was alive again," said Darroch, who also tested positive for Lyme disease.
For many, finding treatment involves long trips and costly procedures. Evelyn Throne, the founder of the Lower Bucks support group, takes the train to Washington D.C. every six weeks to see her "LLD" or Lyme-literate doctor, as she calls him.
Those that do have Lyme-literate doctors still face the sometimes daunting costs of treatment. Most health insurance companies refuse to approve antibiotic treatments that exceed a 28-day usage period. One member of the support group, Regina Mitchell, said it costs her and her daughter $600 a month out of pocket to treat CLD. She has been dealing with the disease for 10 years.
"It's all politics," Regina Mitchell said. "Insurance companies don't want to pay for the treatments and doctors don't want to do the treatments because the insurance companies won't pay."
Non-chronic Lyme disease itself is prevalent in the area. Pennsylvania is one of the top three areas of outbreak for the disease, seeing on average almost 4,000 reported cases a year. Throne believes this number to be inaccurate.
"One in every 10 cases is actually reported; most go unnoticed. The number (of people infected by Lyme disease) could easily be 40,000 … 70 percent of deer ticks carry the disease," Throne said.
Bucks County has the fifth highest reported incidents of Lyme disease in the state, seeing somewhere in between 50 to 100 reported cases in the county a year.
For those who have or had Lyme disease, and wish to get in touch with the Lower Bucks Lyme disease support group you can visit their website or visit them during their next meeting on March 20 at the Middletown municipal building.