Laura Nardelli recalls, all too vividly, the day everything changed. It was a warm day in June, and her young daughter, Sophie, had experienced an “overnight explosion of OCD” no one could explain.
“All her symptoms were neuropsychiatric,” says Nardelli, whose family lives in Wolfeboro, N.H., and Keene Valley, N.Y. “All of a sudden she wouldn’t come inside the house. She basically lived on our deck all summer. That was how it all began.”
Sophie’s symptoms worsened over the next several years, until tests revealed a troubling diagnosis: encephalitis, or inflammation of the brain, caused by Lyme disease, an insidious malady acquired through the bite of a blacklegged tick carrying the bacterium Borrelia burgdorferi.
Sophie’s story has become more common than one might expect. Although most people are familiar with Lyme’s early symptoms—fever, headache, joint aches and fatigue—the disease can lead to much more serious problems if left untreated, according to J. Andre Garabedian, M.D., a board-certified physician and an authority on Lyme.
“Initially, the symptoms of Lyme are very vague,” says Dr. Garabedian, the founder of The Garabedian Medical Clinic in King of Prussia. “A lot of people think it is a virus-like illness because they never see the tick or the telltale bull’s-eye rash, which is present only 30 percent of the time. Also, the ticks we’re talking about are smaller than people might think; the nymphs, at most, are the size of a poppy seed.
“Most people just wait for the flu-like symptoms to go away, but that’s a missed opportunity,” he continues. “If you don’t catch it in the early stage with an adequate amount of antibiotics, it can lead to more advanced problems that can affect the central nervous system, the joints and the heart.”
An Adaptable Foe
Among the fascinating, and terrifying, aspects of Lyme is its ability to evolve and outmaneuver the human immune system. In an increasing number of cases, even after antibiotic treatment, symptoms can linger—if not worsen—for months and even years, in what is now referred to as post-treatment Lyme disease syndrome.
“If you miss the window at the beginning of the infection, Lyme penetrates the cells and is extremely difficult to eradicate,” says Dr. Garabedian, a family doctor for 30 years before founding The Garabedian Medical Clinic five years ago, treating not only Lyme but also fibromyalgia, chronic fatigue syndrome and thyroid disorders, among other conditions. “When it is exposed to too many insults in a hostile environment, it actually changes its morphology. It’s an extremely intelligent organism that can constantly change and evade the immune system.
“Lyme is not a condition the immune system can control,” he continues. “It can become resistant to treatment or avoid antibiotics by going into a dormant stage. Once it is established, it starts an inflammatory process in the brain that migrates throughout the body. As a result, you can have cognitive malfunction, neuropathies, headaches, sleeplessness, muscle stiffness and drooping of the face, also known as Bell’s palsy. The longer it’s left untreated, the more complex and severe the symptoms. Some people can become totally disabled. That’s why you have to treat it with the utmost respect and power to get the best result.”
To combat the disease, Dr. Garabedian embraces an integrative approach based on comprehensive testing, incorporating the likes of antibiotics, neutraceuticals, hormonal therapies and, recently, low-dose immunotherapy, or LDI. Some patients respond quickly, while others might take years to recover.
“Although Lyme’s ever-changing nature makes it harder and harder to eradicate, that does not mean you have to live with this all your life,” Dr. Garabedian says. “Patients ask me all the time, ‘Can you cure me?’ I cannot promise you that, but whether you’re a triathlete or a dancer, I can promise to make you more comfortable and functional so you can return to doing the things you have done before the diagnosis.”
The roots of Lyme disease stretch back to 1970s New England, where several children in the town of Lyme, Conn., developed a mysterious rheumatoid arthritis-like illness now attributed to bites from infected ticks. Dr. Garabedian suggests the disease has since reached epidemic proportions.
“Until 2013, the [U.S. Centers for Disease Control and Prevention] said the average number of new Lyme cases diagnosed every year was between 20,000 and 30,000,” he says. “They have since changed their estimate, now saying it’s more like 300,000 new cases per year—and that is in the U.S. alone. Nowadays, we believe it’s closer to half a million, so you can begin to see the scope of the problem. It’s everywhere.”
‘No Symptoms’
For Sophie Nardelli, the years following her diagnosis were spent traveling the country to receive specialized antibiotic treatments. More often than not, the treatments provided temporary relief, but the Lyme proved a persistent foe. She spent the years between fourth and eighth grades in and out of school, struggling to cope with her debilitating symptoms.
The Nardellis ultimately found Richard I. Horowitz, M.D., a Hyde Park, N.Y.-based physician who has been treating Lyme and other tick-borne infections for the past 30 years. In the process, they found a treatment called intravenous immunoglobulin therapy, an invasive and expensive form of treatment for immune support. Sophie had been scheduled to undergo the treatment when the family learned of LDI, considered a less expensive and less invasive but no less effective option.
Upon researching physicians along the East Coast who could provide this treatment, they came up with only one name: Dr. Garabedian. After a complimentary 15-minute phone consultation with Dr. Garabedian that lasted more than 30 minutes, Nardelli scheduled an appointment at Dr. Garabedian’s King of Prussia office so Sophie could meet with the doctor and receive her first LDI inoculation.
“By the time we drove the seven hours home to New Hampshire, Sophie was able to walk on the driveway and into the house, which is something she hadn’t done in months,” Nardelli recalls. “That was the first ‘wow’ moment for us. That was a year ago, and she has kept doing more and more things that would have put her over the edge just a few months earlier.”
Sophie has since gone back to school. She started playing hockey and hiking again. She even spent several months backpacking through underdeveloped parts of South America. Now 15, Sophie intends to go away to boarding school in the fall. She still sees Dr. Garabedian every seven weeks for treatment.
“Sophie has no symptoms left, but the Lyme did partially destroy her thyroid, so she’ll be on thyroid medicine the rest of her life,” her mother says. “Things are going amazingly, but we know it’s a work in progress. Sophie is getting a slice of being a kid again and having a life again, so even if she did have a recurrence, knowing she can be 100 percent again is a big reassurance.”
The Garabedian Medical Clinic
491 Allendale Road, Suite 222
King of Prussia, PA 19406
610-265-0500
www.garabedianclinic.com
Photograph by Jeff Anderson
