Vickie Holder was preparing to kill herself.
The intense, undiagnosed pain she endured for three years had taken its toll. She started to pay down credit cards and put her affairs in order, deciding that if the pain didn’t stop on its own, she would stop it her own way.
“I could not live with that pain. I just couldn’t live with it. I would just go crying,” Holder said.
Sitting at a table at Fay’s Country Kitchen, the Carlisle restaurant she runs with her husband, Jim, Holder shared the darkest chapter of her story, hoping that it would help someone — anyone — in a similar situation find an answer.
And, she’s certain the answer is Lyme disease.
“If you have something that’s wrong with you and nobody can pinpoint it, you have Lyme disease,” Holder said. “If you’ve been to all kinds of doctors and nobody can find anything wrong with you, I guarantee it’s Lyme disease.”
Finding a diagnosis
It all started three years ago with pain behind her eyes that felt like it was in the eye socket itself, Holder said.
She went to an ophthalmologist who diagnosed her with dry eye. Holder said she had dealt with dry eye in the past and knew this was something different. She sought a second opinion, and that person also rendered the diagnosis of dry eye. A third opinion from Johns Hopkins Hospital after numerous tests also cited dry eye as the cause of the pain.
Holder remained unconvinced.
“It wasn’t that dry that it should have caused me the problems I was describing to them,” Holder said.
The pain persisted, and eventually she said it felt like something was eating away at the nerves in her face.
Holder started trying anything anyone suggested in search of relief. Looking at a list in a folder containing the paperwork chronicling her journey, she started checking off all the ways she tried to ease the pain: acupuncture, muscle testing, ionic cleanses, detox programs, visits to a salt cave, meditation, reiki, clean eating, chiropractic care, massages and essential oils. She even bought a pulsed electromagnetic field therapy mat.
“I was doing all of this all along with going to my family doctor numerous times, and him giving me numerous medications and numerous diagnoses,” Holder said.
Doctors, including a neurologist and an infectious disease specialist, tried CAT scans, brain scans and numerous blood tests over a three-year period to try to get to the root of the problem. Four of those blood tests included tests for Lyme disease that returned negative.
“All four tests were negative. All at my expense,” she said.
Doctors even told her that what she needed might be a psychologist.
Through it all, Holder had the nagging feeling that her condition could be Lyme disease.
“Nobody even said Lyme disease. None of them. I was asking them, ‘Could this be Lyme disease?’” Holder said.
Other symptoms that could have helped to pinpoint Lyme disease were easily explained away by other causes. Aches in her leg? That’s from putting in 12-15 hours a day at the restaurant. Feet hurting? Holder thought she needed new shoes. She had no energy, but she was taking care of her father in addition to working long hours.
“I had a reason for everything except for my eyes,” she said.
The pattern continued for nearly three years at the cost of around $20,000 until a friend made a suggestion that proved to be the turning point in Holder’s search for answers.
“A friend of mine said, ‘I want you to go see Dr. Noonan. I am telling you, you have Lyme disease,” Holder said.
Confronting Lyme disease
Dr. Noonan is Dr. Frank Noonan, who practices family medicine at Central Pennsylvania Integrative Medicine in Myerstown in Lebanon County. Type his name into Google, and the words “Lyme disease” will come up along with his name as a suggested search. What doesn’t come up in this age of connectivity is a website or an official Facebook page.
Holder contacted Noonan and spent a few hours filling out paperwork in preparation for her first visit. Based solely on that paperwork, Noonan was almost certain he knew the cause of Holder’s persistent pain.
“Just by my paperwork, he was 99.9 percent sure I had Lyme disease,” she said.
Noonan ordered yet another test for Lyme disease, but this one was different. These test results went to a lab in California that specializes in tick-borne illnesses, a lab that is reputed to perform one of the most accurate tests in the country for Lyme disease.
It took three weeks for the test results to come back, but Holder finally had her answer on March 6 — she had Lyme disease.
“All these four tests that I had? I just assumed I didn’t have Lyme disease because they all came back negative, but they’re called false negatives,” Holder said.
Dr. Timothy Stonesifer of Cumberland Valley Parochial Medical Clinic in Shippensburg said he sees patients like Holder often. Doctor after doctor will diagnose other causes for their symptoms until one doctor is willing to do different blood testing.
“We really don’t have an accurate test,” he said. “The sad part is it’s the FDA-approved test.”
Stonesifer said better testing would help with early detection and treatment. It could also help to define how persistent the disease is or determine whether extended use of antibiotics or the use of multiple antibiotics would be effective for some patients.
More funding for research is essential to finding that better test. Funding for Lyme disease at both the state and federal levels lags far behind funding dedicated to other health concerns.
“I believe there’s more money for leprosy and swimmer’s ear in the United States,” Stonesifer said.
The road ahead
Holder started treatment on March 30. Noonan prescribed three antibiotics that she takes twice a day. She also takes a probiotic as well as another medication that affects the gel surrounding bacteria to allow the antibiotics to do their work.
Noonan told her that it would take at least five weeks before she would start to see results.
“It was exactly five weeks until I felt relief,” Holder said.
Eight weeks after the treatments started, Holder returned to Noonan’s office for a change to her antibiotic routine and to undergo an IV treatment.
Every six weeks, Holder travels to Myerstown to receive one bag of vitamin C and B vitamins to boost her immune system and a second bag containing a detox agent that allows the dead Lyme bacteria to be eliminated from the body. The whole process takes about two hours.
This will be the routine for the next six to nine months. Each treatment will cost $460, which is not covered by insurance, Holder said.
Speaking now, with a diagnosis and with a treatment plan, Holder almost sounds incredulous when she thinks about where her undiagnosed Lyme disease almost took her.
“To take your life over something that’s been misdiagnosed over three years?” she asked
She knows now that her condition is treatable, but not curable. It’s likely she could experience a flare-up in the future.
“I can live right now with what’s going on with me,” Holder said.