A tick bite over a decade ago has left Lois Pare of Granby with a host of health problems that won’t go away.
She blames a wide range of ailments — from stomach muscle malfunction to memory loss — on lingering Lyme disease, an infection spread by the tiny arachnids.
“I need medicines to make everything work,” she said.
Unrelenting ailments, including non-stop vomiting, left her near death more than once, she says.
Still, says Pare, who is 64, she has had to struggle with skeptical doctors to get proper treatment.
“I was desperate,” she said. “I was mad God was allowing me to live.”
She is not alone. How to treat chronic problems like hers, which mimic symptoms of other diseases, has long been controversial.
There are support groups in the area — one organized by Pare — and a resource center in Northampton to help those who have been sick for years with Lyme-related symptoms yet are left frustrated by their medical treatment.
“Our best guess is that 10 or 20 percent of people who get Lyme may have lingering symptoms for long periods of time,” said Dr. William Swiggard, an infectious disease specialist at Cooley Dickinson Hospital in Northampton.
This makes for a combination of “patients who are frightened and unwell and not well understood by doctors, and the biology of a poorly understood organism,” he said.
According to the Centers for Disease Control in Atlanta, the annual number of reported cases of Lyme disease is about 30,000. However, the CDC also says the true number, according to studies, is likely around 300,000. The Children’s Lyme Disease Network estimates that 25 percent of those 300,000 cases occur among children.
While many people get better following a course of antibiobics, those who experience long-term health problems, like Pare, often find themselves in a gray area, caught between two camps of thinking that say either the infection is lingering and still needs to be treated, or that the infections is gone and the symptoms are caused by the immune system’s continuing reaction, a state called post-treatment Lyme disorder.
The CDC’s list of symptoms is long and includes severe headaches, rashes, joint pain and swelling, facial drooping, intermittent pain in tendons, muscles and bones, irregular heart beat, dizziness, inflammation of the brain and spinal cord, pain, numbness or tingling in the hands or feet, and problems with short-term memory.
Since many of those symptoms are associated with other conditions, Lyme is difficult to isolate as a cause.
“A lot of times people are treated for Parkinson’s, Alzheimer’s, Multiple Sclerosis, even ALS (Lou Gehrig’s disease),” Pare said.
Such confusion is hard for patients. “You could take 15 of us,” Pare said, “and some of our symptoms we’re going to share, but I might have symptoms that no one else does.” Figuring out that it’s Lyme, she says, is a matter of experiencing several concurrent symptoms; experiencing a single ailment from the long list of Lyme Disease symptoms isn’t sufficient for a diagnosis.
Doctors say Lyme disease is not only tough to treat, but tough to diagnose.
Borrelia burgdorferi, the pathogen associated with Lyme disease, is one of many pathogens carried by deer ticks, according to the CDC. Not all bites are infectious, but every tick can carry a pathogen and the longer a tick is biting a person the more likely it is to pass along a pathogen.
Part of the difficulty, says Swiggard, is that people don’t have symptoms that are easy for doctors to see. “They don’t have objective findings and don’t understand what they are looking at, so (patients) get accused of malingering or having this in their heads.”
Jose Martagon-Villamil, infectious disease specialist at Baystate Regional Medical Center in Springfield is one who believes treatment in those cases should be focused on easing symptoms, not eradicating disease. “Current medical thinking,” he said, “is that what these patients are experiencing is not Lyme Disease, but post-Lyme Disease.”
A recent large-scale study in the New England Journal of Medicine found that administering antibiotics long-term did not cure patients.
Swiggard, however, says that does not absolve doctors of the need to figure out how to help Lyme sufferers.
He maintains that Post-Lyme disorder is part of a group of “syndromes” in which people have symptoms — chiefly, different kinds of chronic pain — that aren’t readily tested for.
He believes that such syndromes ought to be the subject of more research. After all, he says, medicine is a service industry, and dismissing or downplaying the illness of Lyme sufferers is “a pretty big failure of customer service.”
“I think it’s time for us to stop having a war,” Swiggard said. “I think it’s time for Western medicine to admit that there are huge gaps in our understanding of a really interesting disease, and try to find a new understanding of post-Lyme Disease.”
He points to emerging research on the similarities of chronic fatigue syndrome, fibromyalgia, and other chronic pain syndromes, among which he numbers Post-Lyme, as a promising place to start.
“There is this unnecessarily adversarial relationship between people who are deeply suspicious of Western medicine and the people who practice Western medicine,” he said.
Alexis Chesney is a naturopathic doctor with offices in Northampton and Brattleboro who specializes in augmenting Lyme disease treatment with alternative approaches.
She notes that the first symptom many patients experience — the large “bull’s-eye” rash — is helpful.
“That bull’s-eye is a blessing, really,” she said. “It’s quite easy to get (antibiotic) treatment at that point.”
The trouble is, she says, only 50 percent of people get bull’s-eye rashes. “What happens to those other 50 percent is the question.”
Many of them, she says, will experience fever, chills, and flu-like symptoms, and not even know they were bitten by a tick. And unfortunately, when Lyme goes untreated, the effects can last for years and affect many bodily systems.
It is these long-term symptoms that specialists like her focus on. “It’s hard to treat when it’s chronic,” she said. “Around the three-year mark, it changes. If we can really get it within three years, you’re going to be OK. But some people, they may have had this 20, 30 years. Not that they can’t get better, but it’s a much longer journey.”
She uses herbs, including those with antibacterial properties, to complement antibiotics in her treatment of the disease.
Meanwhile, patients like Pare seek solace in one another via support groups and the resource center in Northampton.
In Pare’s case, she first organized a walk in 2013 to raise awareness of Lyme disease and then asked her minister, Aida Fernandez of Hope United Methodist in Belchertown, how the church could help. The result was the congregation adopting a Kick the Tick Mission which hosts speakers, provides annual support of the walk and offers Lyme disease information at church events.
Pare also formed a support group which meets monthly in South Hadley.
“It came out of my severe loneliness and depression of having Lyme Disease … not knowing what to do,” she said. “I decided I would put something in the paper and see if people were interested in coming.”
They were. A lot of them — current membership is around 45, Pare says, though some events draw 100 people or more.
“People are frustrated and alone,” she said. “We offer a space where they can talk about their frustrations and know somebody is listening to them.”
Dealing with Lyme long-term is devastating, Pare said. “People in my group come because they’re hurting. I’ve had people in the group lose their home. Suicide is common (among long-term Lyme sufferers).”
But, she says, those in the group soon see that they aren’t alone.
“I can’t always provide answers,” Pare said, “but I can listen when the doctor is telling them they’re crazy.”
Maria Malaguti, 52, founder of the Lyme Disease Resource Center at 343 King St., Northampton, has suffered myriad debilitating symptoms since contracting Lyme disease in 1997. She runs two support groups per month at the center and is recruiting holistic healers to donate their services to chronic Lyme patients. Paula Barron, who offers lymphatic massage, a light touch therapy technique, and Laurie Mars, who offers cranial sacral therapy, also a light touch therapy, have already signed on.
As Pare does, Malaguti provides those with Lyme a place to find information and comfort.
“People can feel accepted and welcome and be comfortable telling their stories,” said Malaguti.
She has peer counselors available at her organization and she also refers people to naturopathic physicians like Chesney.
Pare says Lyme disease has been a source of pain and frustration for her since the time her first symptoms appeared.
Even though the telltale bull’s-eye rash appeared after her husband removed a tick from her body, she said her doctor diagnosed her with cellulitis and treated her for that.
“I did feel better,” she said, “and the rash did go away. But once I was done, about four weeks later, I woke up and half my body, my skin felt like it was half an inch thick.”
She went back to the doctor. “Once again she said, ‘No, it’s not Lyme disease. It’s just the worst case of cellulitis I’ve seen.’ ”
After more treatment, Pare again felt better. Then her symptoms returned. The third time, the doctor agreed to do a Lyme disease test. “It came back positive,” Pare said. “But it was too late.”
Pare says among her worst symptoms has been unrelenting vomiting that led to dehydration. Doctors, she says, treated her, and sent her home, where the vomiting continued, leading again to dehydration. “I gave up,” she said. “It’s not really living anyway when there’s a world out there telling you you’re crazy.”
But she survived. And the Kick the Tick support group, says Pare, has provided a lifeline.
“That’s living to me,” she said, “saving someone else from my suffering.”
For more information about the Kick the Tick group, email kickthetick@yahoo.com or visit www.facebook.com/KickTheTickLymeAwarenessAndSupportGroup.
The Lyme Disease Resource Center can be found at 343 King St., Northampton, and online at www.lymedrc.org.
Free-lance writer Eric Goldscheider contributed to this story. James Heflin can be reached at jheflin@gazettenet.com.