Exactly What Is Lyme Disease and Why Is It Sometimes Controversial?

To sufferers, Lyme disease is like that old adage about the weather: Everyone talks about it, but no one does anything about it. We talked to some people who are tired of struggling with the disease and are using their talents to make a difference. And we’re including some useful information so you don’t become a victim yourself.

If you’ve lived in New Hampshire for any length of time, you’ve heard about Lyme disease. You know that you’re supposed to cuff your pants into your socks and spray yourself with tick repellent before venturing into tall grass or the woods, and check for ticks following any circumstances in which you might have come in contact with a tick.

But despite public awareness of Lyme disease, you might be hazy on the particulars, such as what to expect if you get it or how the disease is treated. Perhaps that’s at least partly due to the fact that even experts are a little unclear on some of the intricacies of Lyme disease.

But there’s something else too. It’s almost as if, in some people’s eyes, Lyme disease is a bit of an outlier, an outcast of sorts. How seriously should we take it, exactly? How big a deal is it, really, if you get it? Is some of it in people’s heads?

Tremendous controversy surrounds Lyme disease, with debate about how long Lyme disease can remain in a person’s body, how it should be diagnosed, how it should be treated, and more.

Some of the people who have Lyme disease have suffered with symptoms for years and feel neglected and mistreated. They believe that some doctors and certain medical authorities, such as the Centers for Disease Control (CDC), have turned their backs and denied them proper treatment. Doctors, on the other hand, might feel squeezed between the standard treatment protocol endorsed by public health officials, and the patients who insist they have Lyme disease but perhaps lack physical or quantifiable evidence.

A “Lyme-literate” Doctor

Lynn A. Durand, MD

Lynn A. Durand, MD, is a family medicine physician at Concord Hospital’s Family Tree Health Care. He specializes in Lyme disease, and is known among people in the Lyme disease community as a “Lyme-literate” doctor, one who understands the disease and can help those who suffer from it.

In fact, Durand has first-hand experience with the disease, having contracted it 10 years ago. His interest in Lyme disease stems not so much from his personal experience, though, as it does from wanting to help people who have few places to turn for medical care. With nowhere local to send Lyme disease patients for help, these days Durand takes care of them himself.

Before he discusses Lyme disease, Durand is careful to point out that his opinions are his own; they are not necessarily representative of conventional medicine or of Concord Hospital, where he works. “It’s a very politically contentious topic,” he says.

Indeed.

Lyme disease is a tough nut to crack. Its symptoms are highly variable, and tick bites can cause co-infections, which complicate matters even more. It is tough to identify, and a challenge to treat. And, “it can involve any and every organ system” in the body, Durand says.

Testing is also part of the Lyme disease problem. “There’s all sorts of data” that shows that the routine way of testing has “very low sensitivity,” Durand says. Research out of the CDC found the routine method of testing was “less accurate than a flip of a coin,” Durand says. “Most of us who treat a lot of Lyme disease use a Lyme specialty lab that uses a few different laboratory test methodologies in order to get that sensitivity from 32 percent to way, way, way higher.”

Sometimes Lyme disease, which is estimated to affect hundreds of thousands of people each year, produces only mild symptoms that quickly improve, but in other cases, victims of Lyme disease find that their lives are profoundly and permanently disrupted. Who will get hit hardest is anyone’s guess. “I’ve seen extremely strong, vital athletes who can basically barely walk to the mailbox [after contracting Lyme disease] and then you see some older people that do very well,” Durand says. “It’s a lot more than just the vitality of the patient.”

Sounds scary — and it is, but Durand says that “it is likely that the average person who gets a tick bite and then Lyme disease, and then gets early treatment, probably gets fully over it.”

Left untreated, however, Lyme disease can spread — to the heart, joints, everything. Talk to people who have Lyme disease, and you’re bound to come across someone who tried to get early treatment but didn’t. They’ll mention inaccurate testing, misdiagnosis, and conflicting notions concerning the potential for Lyme disease to be a chronic condition.

“There is argument and discussion” about long-term symptoms related to Lyme disease, Durand says, and about whether long-term antibiotics should be prescribed as treatment. “There are some people who have long-term symptoms and clearly improve with long-term antibiotic treatment,” he says.

But there are also concerns related to antibiotics, including worries about drug-resistant bacteria. Doctors “want to be good stewards” of antibiotic use, Durand says, “so overall in medicine there’s an effort to try to minimize the use of antibiotics.”

While we wait for a solution, the imbroglio continues. On the following pages, meet a handful of Granite Staters who, like Dr. Durand, have used part of their lives, their art or their business to increase awareness and push for a cure of an insidious disease that can take not just a physical but a psychological toll.

Kathie Fife Photographer

Kathie Fife was diagnosed with Lyme disease three years ago — more than three decades after she first contracted it.

Fife, 47, a photographer who lives in Canterbury, says that a review of her medical records, including tick bites plus rashes and a variety of unresolved symptoms, makes it clear that she has suffered from Lyme disease since she was a teenager. She sought help from various specialists over the decades as pain migrated from her back to other areas of her body, but none of their suggested treatments seemed to work.

Fife tested negative for Lyme four times. “I was in immense pain for so much of my life, and the doctors kept telling me it was all in my head,” she says. “They couldn’t figure out what was wrong with me, so they figured it was psychological.”

She would have to give up her career as a natural resource specialist because she lacked the stamina for the job.

Eventually, a friend led Fife to a “Lyme-literate” doctor. “He was able to figure it out,” Fife says, and within a year of being treated with antibiotics, she felt “a lot better.”

Kathy Fife takes her faithful Chinook, Tyler, with her on treks to capture nature for her fine art photos and greeting cards, but she says sometimes the best nature photos come to you, like when this cute opossum took up residence in her yard and even seemed to pose for this portrait. They eat around 5,000 ticks in a season, making opossums a kind of spirit animal to Lyme sufferers.

It’s not uncommon to hear about misdiagnosis and long-term suffering from people who have Lyme disease. Fife hopes to help change that. Among her efforts, she has worked to raise awareness of Lyme and other tick-borne diseases (TBDs) and to help enact change by testifying at the Statehouse. She has advocated for doctor and patient education, which is “severely lacking in this state,” she says, and has provided testimony for bills that would alert patients to the potential fallibility of Lyme disease testing.

“Currently, protocols in New Hampshire are based on acute symptoms of Lyme. This leaves those with chronic infections with limited options for diagnosis and treatment,” she says.

She highlights research that indicates that Lyme disease and associated infections can cause debilitating physical changes and psychiatric symptoms that contribute to suicide risk, and she uses social media to share research and facts about Lyme and TBDs.

The experience of having Lyme disease is “extremely isolating,” Fife says. “It’s because Lyme is still not recognized as serious. … It goes beyond aches and pains in the joints.”

Scott Flanders Tattoo Artist

Is a tattoo shop an unlikely place to promote social causes? Scott Flanders clearly doesn’t think so.

Flanders, 39, a tattoo artist and owner of Capital City Tattoo in Concord, regularly participates in initiatives that benefit others — among them, a tattoo marathon called Ink to End Lyme. Dozens of tattoo shops across the country take part in the event; Flanders says proceeds go to a nonprofit organization called Lyme Warrior to fund Lyme disease research. The turnout for the marathon, he says, “gets better and better every year.”

Flanders, who does not have Lyme disease, says he has family members and friends who do, and he wants to help them as well as others who suffer from the disease. So, each year he holds a tattoo marathon at his shop, usually for around eight hours, but often longer to accommodate people who want to participate but can’t make it in during official marathon hours.

Customers who wish to take part in the marathon may choose a Lyme-related tattoo such as a tick, bull’s-eye (in reference to the bull’s-eye rash that can be a symptom of Lyme disease), remembrance ribbon or custom design.

Some of customers who participate in the marathon at Capital City Tattoo have Lyme disease, Flanders says, while others get tattoos in honor of friends or family members who have the disease. Some simply want to show their support for the cause.

By using his business and his artistry to raise funds for Lyme disease, Flanders aims to raise awareness of the disease and how to prevent it. He wants to increase funding for research that he hopes will someday lead to a cure: “I’d love to find a cure for everything out there, including cancer. Anything I can do to help find a cure, or help people know more about it, I’m all for it.”

Flanders has also raised money for Riverbend Community Mental Health, autism awareness, and has held a “huge” marathon for Chaos & Kindness. “We do marathons for a bunch of different causes,” he says. “I really like to give back to the community. These organizations are nonprofit and they really need the help from the community.”

Dana Biscotti Myskowski Screenwriter

If you like your murder mysteries presented in a BBC style with a Lyme disease plot twist, Dana Biscotti Myskowski has got a story for you.

Myskowski, a 53-year-old screenwriter who resides in Henniker, has lived with Lyme disease symptoms since 2005. She wrote “I Cannot Play with You,” her first novel, to entertain as well as educate.

Like many others with Lyme disease, Myskowski found an accurate diagnosis for her illness tough to come by. At one point a doctor thought Myskowski might have stage-four bladder cancer. “The doctor and the nurse both commented that they had never seen that much blood in a urine sample,” Myskowski says. Test results came back negative though — good news, except that the doctor had no idea what was wrong.

Award-winning screenwriter and Emmy-nominated producer Dana Biscotti Myskowski used her experiences as a survivor of several bouts of Lyme to craft her first novel about a Lyme-infected investigator on the trail of a murderer.

It wasn’t until 2013 that Myskowski was finally diagnosed with Lyme, after an infection from a splinter landed her in the emergency room.

“The next morning, after taking heavy-duty antibiotics, I felt better than I’d felt in years,” Myskowski says. She had noticed similar improvement when she received antibiotics for bronchitis and for pneumonia — conditions she’d never had before being bitten by a tick. Her doctor connected the dots and came up with the Lyme diagnosis.

Today, Myskowski’s symptoms have greatly improved, though she still suffers from extreme fatigue, occasional headaches, and “brain fog” that causes her to forget names and faces.

Initially, Myskowski wanted to write a self-help book about Lyme, but found that the market was already saturated. So she decided to write a novel whose main character has Lyme disease, but also investigates a murder. She plans to expand the character’s story into a series.

“I hope it’s a fun book to read,” she says, but she also wants to raise awareness of the range of side effects and symptoms that Lyme disease can bring, and of what people who have Lyme disease are going through. “Lyme disease is more than just a bull’s-eye rash and sore knees and flu-like symptoms,” she says.

“So many times [people who have Lyme disease] hear, ‘Well, you don’t look sick.’ We’re doing a good job of not looking sick, but tomorrow we’ll be on the couch because it’s taking so much energy to not look sick today, to get out and do things. So I was trying to educate others.”

Valerie & Elissa Johnson Race Organizers

From left: Valerie and Elissa Johnson

As they watched their mother struggle with Lyme disease, Valerie Johnson and her sister Elissa felt they had to do something. Their mom Lois had been bitten by a tick in the backyard of her Amherst home, but her doctor did not think she had Lyme disease. Eventually, her worsening symptoms drove her to seek treatment from another doctor, who prescribed antibiotics.

Lois, who is now 70, “has had every kind of treatment you can imagine, Eastern and Western,” Valerie says. Prior to the tick bite she’d been healthy and “super active,” but Lyme disease “has changed her completely,” Valerie says. “It’s changed our family dynamic.”

Lois has her good days, but mostly continues to suffer with symptoms that include chronic fatigue, debilitating headaches, body aches, chills, and a pins-and-needles sensation under her skin. “It also really messes with her stomach,” Valerie says, and “there are days when she’s very weak.” She spent the past Christmas sick in bed and on the couch.

The expense of Lois’ medical care quickly added up, and ultimately forced her and her husband to sell their home.

“It was rapidly becoming obvious that this was not going to be a short road, and that the expense was huge and beyond what they were able to handle,” Valerie says. Desperate to help, she and Elissa held a 5K road race at Mine Falls Park in Nashua in the fall of 2012 as a fundraiser. “That first year was simply to benefit my parents,” Valerie explains, but “we started meeting so many people that needed help.” Since then, proceeds from the annual race continue to benefit Valerie’s parents, but also go to other Lyme disease sufferers and help provide community education about Lyme disease.

“Many people were shocked when we told them what happened to my mom,” Valerie says. “We’d sometimes hear ‘Gosh, I thought Lyme disease was just something that dogs got.’ So it was very obvious that there were other people who needed help, and there was a big need for education and prevention.”

Lois’ Race for Lyme is held each year on the Saturday of Labor Day weekend. The 5K course stays within Mine Falls Park and is a chip-timed race that welcomes walkers as well as runners. “It’s a family-friendly event,” Valerie says, that attracts a range of participants, from folks pushing their kids in carriages to walkers who just want to be part of the event to serious runners who come to compete. “And,” Valerie says, “it’s a leashed dog-friendly race, because dogs get Lyme disease too.”

For more information, look for Lois’ Race Against Lyme on Facebook.

Laura & Gail Piazza Cookbook Authors

From left: Laura and Gail Piazza

It’s understandable that some Lyme disease sufferers feel somewhat helpless, particularly those who experience severe and long-lasting symptoms. But Laura Piazza and her mother Gail want people with Lyme disease to take a more active role in how they feel by changing their diet.

Laura contracted Lyme disease in 1999. She went to her doctor, but was not treated for Lyme disease until about six weeks later, when she “got really, really sick” and ended up in an emergency room. By that time, the infection had spread. Ten years later, at the age of 34, she was diagnosed with chronic Lyme disease.

Today, most of Laura’s symptoms have abated, with the exception of ongoing fatigue. She gives a lot of credit to her current doctor, but also to her diet, which she was inspired to overhaul after reading “The Lyme Disease Solution” by Kenneth Singleton, MD. Singleton found from his own experience as a victim of Lyme disease as well as his patients’ that proper nutrition — particularly steps to reduce inflammation in the body — can significantly enhance recovery from the disease.

Laura liked the idea of actively participating in her treatment but feared she wouldn’t be able to stick to Singleton’s diet. She turned to her mom, a food stylist and recipe developer, for help. “I’ve been developing recipes for a very long time,” Gail says, “[but] I had never developed recipes for someone who was sick. But then I thought, ‘Well, what does that matter? No matter what, it has to taste good and look good.’”

With Singleton’s dietary do’s and don’ts laid out before her, Gail got to work. “It was a challenge” initially, she says, but as it turns out, she needn’t have worried. Gail’s recipes, Laura says, “were so delicious.” With the change in her eating habits, she “started feeling so much better.”

Laura recognized that others might find it difficult to create appealing dishes that complied with Singleton’s guidelines. So, relying on her professional skills as a photographer and graphic designer, as well as her mother’s expertise and Singleton’s blessing, Laura and her mother embarked on co-authoring “Recipes for Repair.” Many of the book’s recipes are “paleo” in nature — heavy on the protein and light on the carbs. But Gail tried to make the recipes family-friendly and appealing to anyone. “No one needs to know that you’re on a special diet,” she says. “It’s just dinner.”

The project took some determination to finish, given that Laura lives in Sunapee while Gail resides in Washingtonville, New York. They traveled back and forth to style and photograph the food, and in 2010 published the book, followed by a second revised edition in 2016. “We didn’t skimp,” Gail notes. They designed the book so that it lies flat for easy use, with a generous font size and recipes presented in a series of steps rather than in paragraphs that might be more difficult to follow for people who aren’t feeling well or have vision difficulties. Laura “won a prestigious design award” for her efforts, Gail says proudly.

Having now followed the diet for years, Laura says, “I don’t ever feel like I’m being deprived of anything. I want people to know that eating well doesn’t have to be a negative.”

She adds, “Eating well can be enjoyable and it really can impact your life and how you feel … even if you’re perfectly healthy.”

Gary Daniels Lawmaker

Given the fraught political climate of recent times, it’s nice to hear of a politician working side by side with citizens to fight for change. Gary Daniels, a former state representative and state senator from Milford, worked at length to enact legislation that would benefit Lyme disease sufferers.

It all started back in 2010, when Daniels was contacted by an old high school classmate who for years had struggled with Lyme disease. She had asked her primary care doctor to treat her for Lyme disease, but “was told to go find another doctor,” Daniels says. Unable to find someone in New Hampshire who would treat her, she ended up traveling to New York.

Daniels started to investigate, and quickly realized he’d stepped into the heated controversy that surrounds Lyme disease. “I didn’t know how contentious it is,” he says, but he soon learned of what he believed was largely responsible for his high school friend’s experience: a discrepancy in medical standards that put doctors in a difficult situation, placing those who prescribed long-term antibiotics for Lyme disease at risk of disciplinary action from the Board of Medicine.

Daniels sponsored a bill that would enable doctors to treat chronic Lyme disease with long-term antibiotics without fear of punishment. “We ran into opposition at every stage,” he says, including from government officials with medical field connections. The bill was “politely” killed, Daniels says, until a public hearing when some of the House members had a change of heart. “We had over 200 people show up for the hearing,” Daniels says, some in obvious pain.

The bill passed, only to became stuck once again in the Senate. It was reintroduced by Daniels in 2011, when it finally became law, though Gov. John Lynch did not sign it. The new law meant New Hampshire was “just following the same standards that were already in place” in other states such as Connecticut, Daniels says.

Daniels does not regret persisting to get the bill passed. “When somebody needs medical care and they go to a doctor in New Hampshire and they’re told ‘go find another doctor’ … it just seemed not right.” Daniels believes that plenty of doctors want to help Lyme disease patients and would have if it weren’t for the fear of being punished. “They didn’t want to get into a hassle with the Board of Medicine,” Daniels says, “and I can’t say that I blame them.”

Daniels also co-sponsored a bill that became law in 2015 and designated May as Lyme Disease Awareness Month, and more recently he worked on a bill that would require patients to be informed in writing about the unreliability of Lyme disease testing. That bill failed to become law, but citizens and current legislators plan to continue the effort to change that.

Daniels credits the 12 citizens he worked with — all victims of Lyme disease — as a tremendous help in getting Lyme disease legislation passed. “I didn’t know anything about Lyme when I started. I learned a great deal from their experiences,” and from others in the Lyme disease community, he says.

Daniels considers his work related to Lyme disease a highlight of his legislative career. “I’ve always considered that [first Lyme disease] bill as probably the primary bill I got passed. I mean, there are others that I worked on that were important, like worker’s compensation and things like that, but this had to do with people’s lives. It was very satisfying to know that we could finally [help] people who had been looking for so long to finally get the treatment that they needed.”

“Prevention is ultimately what you want,” he says, “but you can’t forget the people who are already suffering with it.”