Fighting for
a cure for Lyme

By Jon Campisi
Times Staff Writer

Seven years ago, Penni Morton was a relatively active, healthy, productive member of society.
Fast forward not even a decade later, and the 38-year-old Northeast Philadelphia native and Feasterville resident has deteriorated to a wheelchair-bound, sickly wife and mother of three who is reminded of her condition daily with the constant bouts of pain and fatigue.
Morton suffers from an advanced state of Lyme disease, a potentially chronic ailment that usually begins with a bite from a minuscule deer tick.
And while the culprit is anything but big, Morton’s problems are immense. It all started during a camping trip with her husband Tim and their then-9-and-11-year-old children. Morton, Tim and the oldest child ended up getting bit, thus beginning their seven-year fight against the debilitating disease.
But since Lyme disease is still a relative mystery to doctors, the three didn’t actually learn what was happening to them until three years later. By then, it was pretty much too late, especially for Morton, who today seems to be the most affected.
"I can die from this, yes, all because my Lyme disease went undiagnosed for so long," Morton said in a recent phone interview. "If you catch it right away ... then you’re fine, but if you go untreated, you’re in trouble."
The classic symptom of Lyme disease is a skin rash in the shape of a bull’s-eye, although Pat Smith, president of the New Jersey-based national Lyme Disease Association, noted that fewer than 50 percent of patients exhibit this sign.
There are a whole host of other symptoms, many of which mirror those of the flu or other common illnesses, which is why detection is so difficult, Morton said.
Lyme disease is also hard to diagnose because of unreliable testing procedures.
"It’s almost impossible to get a positive blood test because Lyme doesn’t live in the blood; it lives in the tissue," Morton said.
Although Lyme Disease Awareness Month is nearly over, Morton’s aim is to continue to educate the public on the perils of the affliction, one she said remains somewhat unknown despite the relative strides in modern technology.
She gets agitated when speaking about the insurance industry and medical field, both of which seem to cause her nothing but aggravation.
"It’s a mess," she said. "Doctors don’t really know much about it."
One of the problems for Lyme disease patients is that many insurance companies refuse to pay out when it comes to treatment, since they consider the disease to be either curable or a figment of the imagination. Morton said a war between the Lyme Disease Association and the Infectious Disease Society of America has been going on for a while.
The latter group, she said, claims "there’s no such thing as chronic Lyme," and that it should be cured with a cocktail of intravenous drugs in about a four-to-six-week time span, "and that’s not true."
For Morton, the fact that her family has incurred out-of-pocket expenses related to their daily doses of medicine has had a detrimental effect on both their livelihood and home life. The couple, who used to run a cell phone store at County Line Road and Bustleton Avenue, had to sell their business because of an average of $35,000 in annual medical bills.
This figure doesn’t include their monthly health insurance premiums, which have gone up in recent years. They also had to sell their shore house and dip into their retirement savings. All of this because there are simply no treatment guidelines for Lyme disease, Morton said.
"This is killing us," she said, speaking strictly on financial terms.
Morton’s oldest daughter, now 18, is in a remission of sorts; her disease is being managed, but not cured entirely, something that can never be done, Morton claims.
The couple has two younger children, ages 5 and 6, both of whom Morton was pregnant with while afflicted with the disease, although she hadn’t yet been diagnosed. The fear now, she says, is that the disease will one day surface in these two, since Lyme is transmittable from mother to child.
"That’s what we worry about now," she said.
The other problem with Lyme is that it can often lead to other diseases, such as multiple sclerosis or ALS, better known as Lou Gehrig’s Disease, which causes a progressive degeneration of nerve cells. Morton now suffers from autonomic neuropathy, a similar type of nerve damaging disease which can be fatal.
"You can die from the Lyme or what the Lyme causes," she said.
There are some unconventional methods used to help Lyme disease patients, Morton said, but often they are outrageously expensive, not covered by insurance and simply not practical. One example was the hyperbolic oxygen chamber, a pressurized device that delivers 100 percent pure oxygen to the patient. The problem is that it costs $150 per treatment, and treatment protocol calls for two treatments a day for 40 days straight.
"That’s the only thing that has ever worked for me," Morton said.
The treatment is currently used for wound care and has been proved effective for use with children with autism, but it has not been approved as a recognized Lyme disease treatment, she said.
"It works; why wouldn’t insurance pay for it?" she asked.
These days, Morton’s husband is able to work from home, and they have a live-in caregiver. But Morton feels her independence is slowly slipping away. She can’t even get out to do her own grocery shopping anymore. Her troubles manifest in a seemingly endless stream of stress, most of it brought on by the fact that her fight seems to have no end in sight.
But there is one bright spot — the three doctors who have been able to help her out. While it took a number of years to find the right team of physicians, Morton now sees a Lyme Disease specialist, a neurologist and a pain management specialist who work to keep her functional.
"They believe me; they don’t treat me like I’m crazy, and they keep me alive," she said. "I couldn’t live without them."
While Morton’s story is certainly compelling, she is only one of a large number of patients suffering from Lyme disease around the world who experience similar hardships. The disease currently affects people in 65 countries worldwide, said Pat Smith, president of the Lyme Disease Association.
Smith, who has been president of the non-profit organization for zzzzzzzzzzz12 years, first started researching Lyme disease after her two daughters were diagnosed more than 20 years ago.
Smith speaks passionately about detection and prevention, urging people, especially parents, to check for ticks, especially after coming in from outdoors. If a deer tick is found on the body, proper removal is key, she said, and should take the form of extraction with a pair of pointed tweezers. They should not be coaxed out of the skin using petroleum jelly or other substances. This is a common misconception, she said.
And, contrary to popular belief, ticks are not only found in the remote annals of forest land.
"I want to put to rest the myth that you have to have woods to have ticks," Smith said.
She said development has had a detrimental effect on the spread of the disease, since the more trees and shrubbery that are removed to clear way for construction, the greater chance that ticks will move closer to existing homes.
"They’re bringing these ticks into close proximity now to people," she said.
Smith, who grew up on Bucks County and now lives in central New Jersey, said there are a few physicians in Pennsylvania who specialize in treating Lyme disease, but more are in neighboring states such as New York and New Jersey. Morton travels more than an hour to northern New Jersey to visit her doctor, Amelia Eiras.
Smith said detection is the key when it comes to Lyme disease. If it is caught within a few weeks, chances for recovery are generally very high. But if the disease goes untreated, it can become chronic, thus leading to a lifetime of pain and suffering, much like Morton’s situation.
These days, Smith spends much of her time working to raise awareness about the disease. She often testifies before state and federal officials and is working to ensure passage of bills that would make easier the treatment of Lyme disease and insurance payouts for medication and doctors visits. Smith said there are many prominent leaders in Congress pushing for such bills.
But it could be a long road toward having Lyme Disease recognized as the serious illness that it is.
"In the meantime, patients are falling through the cracks," Smith said.
Smith said there are "hundreds of thousands of patients just like Penni" all over who are suffering from Lyme disease, with virtually no end in sight.
"It’s pure insanity what’s happening to these patients, but nobody wants to address it," she said. ••
For more information about Lyme disease, visit www.lymediseaseassociation.org
Reporter Jon Campisi can be reached at 215-354-3038 or jcampisi@phillynews.com