39 years after Lyme disease is detected, accurate diagnosis and treatment remain elusive.

Tracy Poland didn’t think much about the bug that bit her while she sat under an apple tree in Waterford. When a red rash later spread across her skin, she didn’t get alarmed about that, either.

But when she became sick — nauseated, tired, achy — she thought back to that bug bite and wondered. 

“I always, always thought I had Lyme disease,” Poland said.

But two Lyme blood tests came back negative.

As Poland got sicker, unable to walk or even to get out of bed some days, doctor after doctor told her she must have depression or chronic fatigue syndrome or that it must all be in her head. It couldn’t be Lyme disease, they said, because the test was negative. It’s certainly not chronic Lyme disease, they said, because there’s no such thing.

Except, Poland believes, that’s exactly what she had.

Years later, a doctor confirmed it. And with long-term antibiotics, she started to get better.

Today, Poland still struggles for medical acceptance of her Lyme disease.

She’s not the only one.

“When I finally found out and reached out (through articles in local newspapers), I got hundreds of phone calls from people all over the United States — everywhere — from California to you name it,” said Poland, who started a Lyme support group in Norway seven years ago.

“People were just crying and sobbing on the phone that they haven’t been diagnosed, that they don’t know what they have,” she said. “Their stories sounded like my story, and they just begged for information on what to do and where to go.”

Nearly 40 years after it was discovered in Lyme, Conn., the disease, its diagnosis and its treatment continue to frustrate sufferers, to conflict doctors and to raise controversy.

And the disease is spreading.

In August, the national Centers for Disease Control and Prevention estimated that 300,000 Americans are diagnosed with Lyme every year — 10 times the number previously thought. Most cases are in the Northeast and upper Midwest.

Maine reported 108 cases in 2001. In 2012, it had 1,111 confirmed and probable cases, giving it the second-highest incidence rate in the country — besting even Connecticut, where the disease had been found. 

Yet despite being first recognized 39 years ago, Lyme remains extremely controversial. Doctors disagree about how to diagnose it, how to treat it and whether a long-term form — chronic Lyme disease — even exists.   

Doctors remain cleanly divided on the issue.

On one side, doctors believe in a blood test, a short course of antibiotics to treat the illness and do not accept chronic Lyme disease as a possibility.

On the other side are the doctors who believe the blood test is no better than the flip of a coin, that antibiotics can be needed for years and that chronic Lyme not only exists, but is killing people.

Patients say they’re caught in the middle with a sickness that is destroying them.

“At least half the (Lyme) people I’ve met have been suicidal over this,” Poland said.

‘I was getting sicker and sicker’

Researchers first recognized the disease in Lyme, Conn., in 1975, when 39 local children and 12 local adults shared uncommon arthritis symptoms. A quarter of them also experienced an unusual rash before the arthritis set in.

In 1977, the illness was named “Lyme arthritis” and transmission was linked to the deer tick. In 1979, it was renamed Lyme disease when researchers noted arthritis wasn’t the only symptom: Patients could also have severe fatigue and neurological problems. 

In 1982, Dr. Willy Burgdorfer discovered the bacteria that caused Lyme. It was named for him: Borrelia burgdorferi.

By the late-1980s, an antibody blood test was developed to gauge whether people had been exposed to Lyme, and doctors were required to report all cases of the disease. News of Lyme disease began to spread in the media.

Lyme was most often found along the coast back then. It slowly spread inland and north. 

In 2012, Lyme was reported in all 16 counties in Maine. Most cases were south of Bangor.

Although national Lyme numbers have not yet been released for 2013, Maine Center for Disease Control and Prevention Director Sheila Pinette said Maine had 1,350 confirmed and probable cases in 2013, up 239 from 1,111 the year before. Pinette believes cases are under-reported and the true numbers are likely higher.

Regardless, growth has been steady for two decades.

“Except for, I think, 2010, when we actually had a slight decrease,” Pinette said. “They weren’t sure whether it was related to possible weather conditions that year, but it’s progressively increased.”

In 2003, Maine had 13.4 Lyme cases per 100,000 people. In 2012, it had 66.6 cases per 100,000. 

Only New Hampshire had a higher Lyme incidence rate in 2012. 

Officially, about half of reported Lyme cases in Maine start off with a red rash, though the state CDC believes the true percentage is higher. Other early symptoms mimic the flu, including fever, headache, joint and muscle pains and fatigue. Late symptoms can include arthritis, Bell’s palsy and meningitis, among other symptoms.

Poland believes she got Lyme 25 years ago. She was a married mother of three, pregnant with twins and working full time when she started feeling tired, achy and sick. She found herself sleeping all weekend to recover from the rest of the week.

Poland thought she must be working too hard. She thought running after three kids — then five — was leaving her exhausted.

“I just always had an excuse for every symptom because I’m a tough gal,” she said. “I just kept pushing through. But it got to the point where I couldn’t function at all. I wasn’t getting out of bed.”

Poland thought she might have Lyme disease. But while she’d experienced a bug bite and a rash, she couldn’t confirm the bug was a deer tick and the rash didn’t resemble a bull’s-eye — the hallmark of Lyme, doctors thought at the time. Two Lyme blood tests came back negative.

As years passed, Poland and her doctors looked for other explanations, but she continued to get sicker.

Poland developed heart palpitations, tingling around her chin and a horrible ache in her neck. Doctors gave her varying diagnoses: She had a minor heart issue, she should go see a chiropractor — or she was fine.

Poland did her own research. If it wasn’t Lyme, maybe her home or the mercury in the fillings in her teeth were making her sick. Or the aluminum from her cooking pans. Or diet soda.

She changed where she lived and how she lived — but nothing helped. 

“I would end up in the emergency room so dizzy I couldn’t even walk,” Poland said.

Specialists threw out diagnoses such as chronic fatigue syndrome and depression. She took medication and tried an antidepressant, but that didn’t work, either. Some doctors told her there was nothing wrong; it was all in her head.

“I was getting sicker and sicker. My 80-year-old mom would say to me, ‘Tracy, this is ridiculous. The doctors have to come up with something,'” Poland said. “She expected me to come home one day from one of my doctor’s appointments and say that I had leukemia because I was so, so ill.”

Then, 17 years after her bug bite under the apple tree, Poland met a new co-worker who had been diagnosed with Lyme after a misdiagnosis of multiple sclerosis. He gave her the name of the southern Maine doctor who had helped him.

That doctor sent her blood to a different lab. This time, it came back positive.

She had Lyme disease.

“I instantly got put on antibiotics,” Poland said. She would stay on the medication for three years.

At first, the antibiotics made her even sicker — a common reaction, some doctors say, because the dying bacteria release toxins into the blood.

Then Poland started to get better.

‘War’ among doctors

Poland’s story — negative blood tests, disbelieving doctors, multiple diagnoses, years-long search for help — continues to be a common one among people who believe they suffer from Lyme disease. 

Poland discovered that when she went public with her struggle. In 2007, she started a Lyme disease support group in Norway. The monthly meeting draws between two and 15 people from the Western Maine area, including Gray, Lewiston, Rumford and Sumner.

They talk about their struggles, recommend “Lyme literate” doctors and help each other through an illness that isn’t well understood by friends and family.

“I don’t think I even know the extent of how many people it’s helped,” Poland said. “I know that from time to time, somebody will let me know that it could have very well saved their life by having someplace to go and having a support system and being able to talk about it and having people understand them. The problem with Lyme disease is, people don’t understand it. They think that maybe you have a little arthritis or a little fatigue at times.”

It isn’t always well-understood by doctors, either, although that medical understanding has slowly changed over time.

Many doctors once would only give a diagnosis of Lyme disease if a patient had developed a bull’s-eye rash. Today, the national CDC says 70 to 80 percent of cases nationwide start out with a red, expanding rash, and it may or may not resemble a bull’s-eye.

Many doctors didn’t believe Lyme symptoms could persist for a long time after treatment. The national CDC now says 10 to 20 percent of patients — particularly those who were diagnosed late — can have symptoms that continue or return, called “post-treatment Lyme disease syndrome.” No additional treatment is recommended by the CDC.

Doctors typically would wait for patients to show symptoms or have a positive blood test before they would treat for Lyme. The Infectious Diseases Society of America now recommends that doctors consider starting a patient on a short course of antibiotics as a precaution if that patient has been bitten by a deer tick, does not know how long the tick was attached and lives in an area where Lyme is a problem — such as Maine. 

However, not all doctors follow that guideline, or necessarily know about it.

“To be honest with you, we’ve been educating about it ourselves,” said Pinette at the Maine CDC. “I know when I’ve spoken at conferences, I bring that up as a statement to make sure that if somebody’s had a tick and they come in, you make sure you treat them prophylactically, but every practitioner is different.”

Evolving knowledge about Lyme disease and changes in guidelines mean a patient can get diagnosed and treated one way by one doctor and differently by another doctor. 

Quick antibiotic treatment without proof the patient has Lyme is one of the major issues still dividing medical professionals. Another is the question of whether a traditional course of antibiotics is all that is needed, or whether a long-term course — sometimes years’ worth — is needed to wipe out the disease.

The differences in treatment can become even greater when medical and personal philosophies enter into it.

“There are a lot of controversies that aren’t necessarily all that controversial, but they become controversial because there’s a vocal group that makes them controversial,” said Dr. Gary Wormser, chief of infectious diseases at New York Medical College and a fellow with the Infectious Diseases Society of America. “That’s what I think is happening.”

Dr. Seth Gordon, an internist with St. Mary’s Medical Associates in Lewiston, tends to be conventional and conservative when it comes to Lyme. He sees a “fair amount” of Lyme disease at his practice, a lot of tick bites and a lot of people concerned about the illness.

He is sometimes more cautious than even the conservative Infectious Diseases Society guidelines. He likes to know a deer tick was attached for more than 36 hours before he’ll offer a preventive dose of antibiotics. If someone is showing symptoms, he wants them to have a known tick bite and either a rash or a positive blood test to get 10 to 21 days of antibiotics. Otherwise, he’s going to investigate other illnesses first. 

That’s because, Gordon said, Lyme’s initial symptoms are vague — tired, achy, a general sense of not feeling well — and “a zillion things can cause symptoms like that.”

“Most people who come in thinking they might have Lyme disease don’t,” he said. “On the other hand, let me just say this: When people come in with classic, ‘I’ve been bitten by a tick, I have a big red rash here,’ when you look at that, you don’t even test. You just say this is (Lyme).”

And if symptoms persist? He doesn’t believe in ongoing antibiotics. 

“I think reassurance is important that this usually does eventually get better, and I think people value the fact that we recognize that they may feel poorly for a while,” he said.

Dr. Sean McCloy, a family doctor with the Integrative Health Center of Maine in Portland, leans toward the other end of the spectrum. Lyme is a substantial part of his practice. He often encounters patients who have seen 10 to 20 other doctors and have been diagnosed with a variety of illnesses because no one can figure out what they have.

He believes Lyme can be diagnosed on symptoms alone, absent a blood test or a remembered tick bite. He believes each patient’s situation should be considered individually, and sometimes that can mean antibiotics for months or more.

“I was very conservative about this at first because that’s all I knew,” he said. “I found that the conservative approach was not helping my patients. At the end of the day, I just want my patients to get better.”

Conservative doctors believe the danger lies in treating patients for Lyme when they actually have something else, especially if that treatment means a long period of potentially harmful antibiotics.

“Lyme literate” doctors believe the danger lies in treating patients for everything else when they actually have Lyme, especially when antibiotics are available and putting off treatment can make the disease intractable. 

“You’ve basically got these two bodies of very smart doctors, both of whom want their patients to get better,” McCloy said. “No one’s being an evil person here, but both these sets of doctors really disagree with each other and there’s kind of a war going on in medicine. And that war is spilling over now into media, into politics, into lawmakers.”

The right thing for the patient

Last year, the war spilled over to the Maine Legislature. That’s when lawmakers passed a controversial bill that required the state CDC to post alternative Lyme-treatment information and links on its website.

The new law also requires health care providers to give patients copies of their Lyme blood test results. Advocates asked for that provision because they say laboratories note on the results that a negative test doesn’t necessarily mean the patient is negative for Lyme disease.

The predominant blood tests for Lyme are not perfect, though the two sides disagree on exactly how “not perfect” they are. Many mainstream doctors say the tests are good most of the time. Many “Lyme literate” doctors say the tests are no better than flipping a coin.

Rather than testing for the bacteria itself, the blood tests look for antibodies produced by the body to fight the bacteria. That means someone in the early stages of Lyme might not have yet produced antibodies, which would give a false-negative. Someone cured of symptoms may still show antibodies, which would give a false-positive result. And sometimes the tests are simply wrong, though doctors disagree about how often that happens.

Diane Farnum of Roxbury and Rhonda Buker of Newry helped push for the new law. Both dealt with debilitating symptoms, saw multiple doctors and went through years of misdiagnoses and treatments before being diagnosed with Lyme — Farnum in 2005 and Buker in 2008. Both say seeing “Lyme literate” doctors and taking antibiotics long term helped, though symptoms still come and go because Lyme caused so much damage and, they believe, may still circulate in their systems.

Together, they run an annual Lyme conference in Western Maine and have started support groups in Rumford and Bethel. 

They’ve discovered that a number of support group members go to New Hampshire for medical care because, they say, “Lyme literate” doctors in Maine are rare — and those who are here aren’t easy to find because they’re worried they’ll be sanctioned by the Maine Board of Licensure for diagnosing and treating outside mainstream guidelines.

“They fly under the radar; they don’t want to be known,” Buker said. “We have a really hard time getting doctors to speak at our conferences because they don’t want the press. They don’t want to get in trouble. We couldn’t get any (currently practicing) doctors to testify in front of the Health and Human Services Committee, either, because they were like, ‘I’m not putting myself out there.'”

McCloy, for one, understands the fear.

“That’s an increasing concern of mine,” he said.

He points to a case last year in which a Maine doctor received a warning for unprofessional conduct from the Maine Board of Licensure in Medicine and agreed, among other things, to stop diagnosing and treating Lyme disease outside Infectious Disease Society guidelines.

However, the board’s executive director, Randal Manning, said that doctor was sanctioned not for treating Lyme disease outside the norm but for “flying all over the map” with treatment, failing to document the treatment plan and failing to justify his decisions.

The licensing board, he said, takes no position in the Lyme fight.

“The physician is expected to do what appears to be the right thing for the patient,” Manning said.

Poland says the right thing for her has been antibiotics, natural supplements, change in diet, and seeing a doctor who doesn’t tell her the problem is all in her head. She’s better than she was, though her symptoms still flare up at times. She goes on and off antibiotics as needed.

Two decades of untreated Lyme, she believes, caused irreparable harm.

“It’s a disease that’s horrendous, and I’m just very thankful that, through the grace of God, I’ve been able to keep my head above water,” she said. “I’m just thankful that I can still walk and talk and function to the degree I can.”

Buker and Farnum, too, still deal with symptom flare-ups from years of going untreated.

Neither understands how Lyme can still be so controversial nearly 40 years after it was recognized.

“That’s the million-dollar question,” Buker said. “I used to get very angry about that.”

“The two sides are so embedded in their own, ‘This is the way it is,’ that it’s not moving anywhere,” Farnum said.

They would like less fighting, better testing and more research.

That’s something both sides agree on.

“I don’t think this controversy is going to end until we help these people better,” Dr. Gary P. Wormser of the Infectious Diseases Society said.

ltice@sunjournal.com

What you should know about Lyme disease:

• It is spread by deer ticks.
• Many doctors believe the tick must be attached to a person for 24 to 36 hours for the disease to be transmitted; some doctors say time doesn’t matter.
• Maine is a hot spot for Lyme disease. Most cases are reported in the spring and summer.
• A bull’s-eye rash is a classic symptom of Lyme, but you can have a red rash that does not resemble a bull’s-eye. Some people don’t get a rash at all.
• The predominant blood tests for Lyme are not perfect. Rather than testing for the bacteria itself, they test for antibodies produced by the body to fight the bacteria. That means someone in the early stages of Lyme might not have yet produced antibodies, which would give a false-negative. Someone cured of symptoms may still show antibodies, which would give a false-positive result. Sometimes the tests are simply wrong, though doctors disagree on how often that happens.
• Antibiotics are effective against the disease.
• Lyme isn’t the only disease caused by deer ticks. Babsiosis and anaplasmosis are also on the rise in Maine.

What you should do:

• Protect yourself against ticks. This can include spraying DEET on exposed skin or permethrin on clothing before going outside, tucking pant legs into socks to prevent ticks from crawling up your legs, and using spot treatment, tick collars or spray on pets to prevent them from carrying ticks inside to you. (Experts say parents should be cautious about applying DEET to children and should not apply it to the hands of young children who may touch their eyes or put their hands in their mouths.)
• Place a 3-foot-wide buffer of wood chips or gravel between your yard and the woods to keep out ticks. Place playground equipment close to the house and away from the woods.
• Wear light-colored clothing outside so ticks can be easily spotted. Look and feel for ticks every time you return from outside.
• If you find an attached tick, grasp it as close to the skin as possible and pull up with steady, even pressure. Do not squeeze, crush or puncture the tick because it could release any infection it carries into your bloodstream. 
• Keep the tick in a sealed baggie for identification. Ticks may be sent to the University of Maine Cooperative Extension’s Tick ID Lab in Orono. Only deer ticks spread Lyme disease.
• Some experts suggest sending a tick to a veterinary or other lab that will test it for Lyme, rather than a lab that will simply identify it. However, others say even if a tick tests positive, that doesn’t mean the disease was transmitted to you.
• If you don’t know how long the tick was attached to you, or if you know it was attached for 24 hours or longer, talk to your doctor about a short course of antibiotics to prevent Lyme. 
• Symptoms, which may include a rash, fatigue, muscle aches or a general flu-like feeling, typically appear between three and 30 days after a tick bite. If you and your doctor decide to wait on antibiotics, note your tick bite on the calendar and tell your doctor about any symptoms you get over the next days and weeks. 

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