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The problem with Lyme

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The Ixodus scapulara, or blacklegged tick. The Ixodus scapulara, or blacklegged tick. (Illustration by Mike Fern)

Now endemic, Maine battles the growth of the tick-borne infection 

BANGOR It was just after Thanksgiving in 2011 when Mariana Batryn hit a new low. Having suffered flu-like symptoms on and off for more than a year, the then-sophomore at Husson's New England School of Communications felt so bad after a week-long battle with nausea, fever, dizziness, a loss of sensation in her extremities and bouts of anxiety and depression that she finally broke down and went to the emergency room at Eastern Maine Medical Center. It was yet another stop in the medical system for her, and one that yielded no results by the time she was released.

'I was dealing with other symptoms before that, but that is when it got the worst,' she recalled of that night. 'It was like I had the flu, and they had no idea what was going on with me.'

For Batryn, 22, the question of what ailed her would only be answered seven months later when she took a blood test that finally revealed the mystery surrounding her symptoms.

The answer? She had Lyme disease.

'I was defiant and said to my Dad, No, I don't have Lyme Disease,'' she said of her reluctance to take the test initially. But in looking back, she said she can see how her year and a half of the various symptoms of the disease that is spread through the bite of the Ixodes scapularis, more commonly known as the blacklegged or deer tick, closely resembled what she was experiencing.

'I started having symptoms long before my test, but I didn't correlate it,' Batryn said.

Currently a college senior living in Orono, Batryn never saw the telltale sign that she might have been infected by a tick bite - the bull's eye rash called erythema migrans (EM) by the medical community. Such rashes occur in 75 percent of cases of Lyme disease and are often followed by a brief period of flu-like symptoms that will disappear in a short amount of time. Still, she knows now that she has been experiencing later-stage complications due to the disease, and she would learn that most of her family members and neighbors back home were also affected by Lyme disease.

'There were 10 people in my neighborhood alone out of 38 families that came down with it,' she said. 'My sister was the first to be diagnosed with this after she had a seizure.'

While the test in the summer of 2012 helped assuage her uncertainty, part of the mystery was when she contracted it. In looking back, she believes she may have been bitten in early 2011 while at home, but like many Lyme sufferers she can't pin down when and where it happened.

'I have no memory of the original tick bite nor its original symptoms,' she said. 'When it got worse, it was something I had never felt before.'

Batryn experienced many of the late-stage symptoms that accompany Lyme disease. In addition to her nausea, dehydration, muscle joint and knee pain, and tingling sensations from neuropathy a complication due to damage to her peripheral nervous system that is common with Lyme in its later stages she's also suffered from memory lapses. It reached point in the spring of 2012 that she was forced to take a semester off from college due to the decline in her health. 

'It's been a whirlwind. I was in denial for so long and I've had really good days where I'm feeling fine and then I've had really, really bad days,' she said. 'While going through it, you experience anxiety [and] depression, and you know your body is trying to fight this.'

Many of the symptoms have dissipated a year later, and Batryn has a better understanding of what she's been facing, yet the break in her education set her collegiate career back and she still suffers from some of the symptoms that have never really abated, particularly what she describes as memory gaps and 'brain fog.'

'I've suffered a lot of memory things with it,' she said. 'It's affected my learning ability.'

A growing problem

Batryn is one of thousands who contract Lyme disease each year. The disease got its name from its origin of discovery in the coastal town of Lyme, Conn., which in the 1970s experienced an unusually high number of cases of pediatric arthritis. It was in 1975 when a woman brought the cluster of illnesses to the attention of researchers at Yale, and in 1977 Dr. Allen Steere and his Yale colleagues identified and named the 51 clusters as 'Lyme arthritis.' In 1979, the name was changed to "Lyme disease," when Steere and colleague Dr. Steven Malawista discovered additional symptoms linked to the disease, including possible neurological problems and severe fatigue.

Three years later, the pathogenic cause of the disease was discovered by Dr. Willy Burgdorfer, who published a paper about the infectious agent of the disease and earned the right to have his name placed on the Lyme disease spirochete now known as Borrelia burgdorferi. And in the 30 years since, its prevalence has only grown. The U.S Centers for Disease Control and Prevention reports that Lyme disease is now the seventh-most common Nationally Notifiable disease and the most commonly-reported vector-borne illness in the country. Nearly 95 percent of all cases reported across the country are found in just 13 states located in the Northeast and upper Midwest regions.

While the disease reached a pinnacle in total cases reported in 2009, where nearly 40,000 suspected or confirmed cases were tracked across the U.S., many states have since seen a decline in the tick-borne illness. However, both Maine and New Hampshire bucked that trend and saw a dramatic increase in the number of people who contracted the disease. In fact, both states now rank highest in per capita incidences of the disease in the country.

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According to Dr. Sheila Pinette,director of the Maine Center for Disease Control and Prevention, the growth of Lyme disease has caught the attention of both state and federal health officials, and with 1,111 cases that were reported in Maine in 2012, the state reached a record 83.7 cases per 100,000. However, she feels the number of actual cases across the state is much higher and that it's a growing problem.

'We really do believe it's higher than that. It's one of our top priorities at the Maine CDC because of the progression throughout the state,' she said. 'We have identified deer ticks carrying the Lyme toxin throughout the entire state in every single county, and we've had at least one case reported in every single county.'

Maine has the second-highest incidence rate in the country, while its neighbor to the south, New Hampshire, has earned the unenviable distinction of being tops in the country with an incidence rate of over 110 cases per 100,000. And while state data shows the highest number of cases in Maine involved adults aged 45-64, Pinette noted that children are the hardest hit by the disease.

'The highest incidence is children under the age of 11,' she said. 'Oftentimes they play outside, roll around on the ground and go out in the woods, and Mom and Dad don't check them so well when they come back in.'

A formidable foe

Dr. William Sturrock is a men's health consultant for Eastern Maine Medical Center and the hospital's former chief of family medicine. He's seen a growth in the disease that just over 20 years ago was largely unknown in Maine until it began spreading from the state's southern coastal areas.

'When I first came here in 1990, there was the sense that there wasn't a reported case that wasn't contiguous to the ocean and warmer areas,' he said. 'But that quickly became pass.'

Today, cases have steadily progressed throughout the state to earn its designation along with New Hampshire as the most endemic areas of the country. It's a complex problem he says is dependent on many variables, from climate and wildlife migration to even people's interest in outdoor recreation.

'I can remember going on a hike with my kids and family in Popham Beach a few years back and decided to take a shortcut through a field because we parked at a distance,' he said. 'When we got to the beach and took our shoes off, it was amazing how many ticks we had on our ankles.'

Lyme disease is a vector-borne illness, meaning that an outside carrier introduces the pathogen to the body through a bite. Much like a mosquito's ability to spread malaria and the more recently reported Eastern Equine Encephalitis and West Nile viruses, ticks are the primary carrier of the B. burgdorferi bacteria. 

Tlyme3here are over 800 species of ticks in existence worldwide. Of those, only about 100 species are capable of carrying disease. In the U.S., three genera of the parasitic, hard-body ticks, Ixodes, Dermacentor and Amblyomma, are known to be capable of transmitting diseases to humans. In the case of Lyme, it's the Ixodus scapularis that is the main culprit in the Northeast part of the country, while the Ixodus pacificus affects the western part of the U.S. Yet it's the spread of ticks and the percentage of the tick population that actually carries the bacteria that have health officials concerned.

According to Chuck Lubelczyk, a field biologist at Maine Medical Center Research Institute's Vector-borne Disease Lab, there are about 14 species of ticks in the state and most don't reach people. Yet the ones that do are now found reliably in areas of Lincoln and Greenville and to the south, and outliers have been found as far north as Houlton and Fort Kent.

'You can expect to see more activity in those areas,' he said of the Aroostook County communities. 'One of the problems we have here is that it's an emerging infectious disease and the range is constantly expanding every year.'

Lubelczyk said just 10 years ago many people in the greater Bangor area didn't know that Lyme-carrying ticks were on their doorstep, but since then the tick population has exploded in both the central and Midcoast areas of Maine. In fact, the coastal areas of Rockland, Camden and Belfast now have the highest incidence of tick-borne illnesses in the state.

'The ticks have taken their time getting to the Midcoast, but now that they have the numbers have just exploded,' he said. '2012 was a big, big year. We had the right amount of moisture to keep the ticks happy and active. We also had the right amount of sun to keep people outside.'

The blacklegged tick has a two-year life cycle and goes through four stages in its development. Female ticks can lay up to thousands of eggs, which then develop into larvae before becoming nymphs that are hardest to detect and can cause the most problems.

'In the nymph stage they're incredibly small and you don't even know it's on you and biting you,' Lubelczyk said.

It's during the nymph stage when ticks can begin transmitting B. burgdorferi and latch onto white-footed mice, rodents that serve as the primary carriers of ticks in the wild. While commonly called the deer tick, in which deer serve as the primary host during its adult stage, it's the rodent population that includes mice, squirrels, raccoons and chipmunks that can carry nymph-stage ticks across large sections of forests. They have also been found on birds, which can carry ticks even farther distances along migratory patterns. 

'Even without deer, the rodents will carry the tick population,' said David Struble, the state's entomologist and director of the health and monitoring division of the Maine Forest Service. 'You've got an expanding tick population and now you've got an expanding disease within the tick population.'

Struble recalls early research that showed the progression of ticks from southern Maine to areas near Acadia National Park. Today, officials see ticks in parts of the state that in the past normally wouldn't support a tick population.

'Deer ticks had a very restricted range,' he said. 'My general perception is that the temperature has not been limiting these tick populations are building and there's nothing that's keeping them from spreading.'

Pinette agrees, saying the spread of ticks and explosion of cases in the Midcoast area are a combination of the migration of rodents and deer, and the recent warmer climate that has helped fuel its growth.

'It follows waterways because ticks tend to reside in those long, marshy areas,' she said. 'One of the things we'd love to see is unfortunately a good, hard winter, and we'd like to see that consistently occur because the life cycle is two years and we're hoping we can kill off the larvae stage and the nymph stage.'

Efficient at what it does

It's not hard to detect the respect Lubelczyk has for ticks. Classified as an arachnid and one of nature's many parasitic predators, the tick is built for both feeding and reproduction and does so with astounding efficiency.

'It's very adept at doing what it does,' he said. 'It's evolved nicely into a blood-sucking creature.'

While Lubelczyk said some varieties of Ixodus ticks use a compound called cemetum, which acts like a superglue, to cling to their host to feed, the blacklegged tick is designed differently in that it lies in wait for a warm-blooded host to walk by before clinging on and eventually finding a spot where it buries its feeding apparatus, or hypostome, into its host to begin the feeding process. It's during this time that most ticks will secrete an anticoagulant and in some species even an antihistamine into its host to prevent blood-clotting and sensation during the feeding process.

'Deer ticks have a beak that has several curved-shaped barbs that allow them to hold on to you,' Lubelczyk said. 'You don't feel them the way you'd feel a black fly or mosquito bite.'

In addition to its efficient method of feeding, ticks are also an efficient vector in spreading various bacteria that can cause diseases in both humans and animals. Some varieties of ticks have been known for years to spread Rocky Mountain Spotted Fever, and more recently health officials have seen a growing number of co-infections caused by ticks in the state.

'Ticks have loads of bacteria in them,' Lubelczyk said. 'Ticks from southern Maine will have multiple bacteria and it tends to be more common the further down the state you go.'

That risk of co-infection is something Pinette of Maine's CDC is seeing more often. And sometimes the pathogens transmitted along with Lyme's B. burgdorferi are more troublesome due to the complications they cause.

'We do know there are other illnesses caused by the tick, and they can have more serious side effects and if left untreated can be more severe,' Pinette said. 'In 2012 we had 12 cases of Babesiosis and 34 cases of anaplasmosis, but in 2013 the numbers already surpassed that.'

Babesiosis, caused by the parasite Babesia microti, is spread mostly during the tick's nymph stage and attacks red blood cells in its host. In humans, the infection can cause anemia, blood clotting and even organ failure or death if left untreated.

Likewise, anaplasmosis is caused by the bacterium Anaplasma phagocytophilum and can cause systemic complications and even death in humans if left untreated.

According to Dr. Robert Pinsky, an infectious disease specialist with Maine Coast Memorial Hospital in Ellsworth and Eastern Maine Medical Center in Bangor, the concern is growing for both Lyme disease and the potential co-infections that come with it.

'We're seeing more cases of other tick-borne infections in people with Lyme disease and even people without Lyme disease,' he said. 'We've seen anaplasmosis, babesiosis and even a newer infection of Borellia miyamotoi.'

The latter, which began appearing in Japan in 1995, is a distant relative of the B. burgdorferi spirochete and is known to cause tick-borne relapsing fever. B. miyamotoi has been found in deer ticks in North America and a study published earlier this year in the New England Journal of Medicine found that the rather new pathogen was prevalent in endemic areas affected by Lyme disease.

Pathological respect

Respect has to go the bacteria itself. Classified under the phylum spirochete, Borrelia burgdorferi is a diderm, or double-membraned pathogen noted for its long, helically coiled cells and flagella. In addition to B. burgdorferi, the B. afzelii and B. garinii species can also cause variants of Lyme disease, although much credit goes to the B. burgdorferi.

With appearances similar to a corkscrew, bacteria in this class include not only the ones that cause Lyme disease but also that of syphilis, the nefarious sexually transmitted disease.

'It's a very similar disease to syphilis. It's a very similar organism and it causes an initial lesion at the site of the injury, which in the case of Lyme disease is the site of the tick bite,' said Pinsky. 'It then spreads though the bloodstream to other sites where it can cause later infections, which can be in joints, in the central nervous system, and sometimes in heart tissue.'

Eastern Maine Medical Center's Sturrock agrees, noting that while Lyme disease is much different than syphilis, the mechanics of the organism and its effects on the body are very similar.

'We've known for years from syphilis a host of odd symptoms from initially a local sore on the skin and rashes to later manifestations,' he said. While Sturrock is quick to note there are distinct differences in the pathogens, much of the past research on diagnosis and treatment of syphilis was instrumental in the development of today's defenses against Lyme. From knowledge of how the bacterium invades the body to specific tests for antibodies that help identify it, the similarities between the two are more important than their differences.

'If we didn't understand syphilis like we do, we probably wouldn't have understood Lyme disease as much as we do,' Sturrock added. 'But we're still at a stage of not really having all the answers.'

A part of finding the answers relies on research, and Dr. Joseph Breen with the National Institute of Allergy and Infectious Disease has been involved with Lyme disease since 2007. The institute evaluates research projects in the areas of Lyme and many other disease diagnostics and serological tests, and funds those projects in conjunction with the national CDC and the U.S. Food and Drug Administration.

During that time, he's seen a lot of research dedicated to Lyme disease itself, and it's the basic biology of the Borrelia spirochete and its effects on the host that more research has to focus on in the hopes of finding answers to early detection and treatment.

'It's got a very fascinating biology, but also causes a lot of harm. We need a better way to diagnose it and a better way to kill it. The better we understand the effects, the better we'll be poised to develop a better diagnostic and eventually a vaccine,' he said. 'You have to understand the organism at the basic level, and we wanted to center on earlier detection of the disease.'

With about $25 million earmarked each year for the past few years in research support, much has been dedicated to developing tests that are more reliable in screening for the pathogen. Breen said there are limitations in the current testing available for Lyme disease, with a two-part test being the only reliable one that is currently recommended by the CDC.

'There are other tests that are in development, but the best of course would be a direct detection instead of waiting for the body to develop an antibody,' Breen explained. 'Until we have a better diagnostic, effectively you're going to be left treating the symptoms. The people who develop the rash in endemic areas are easier to diagnose but the rash doesn't always happen or isn't always seen.'

Pinette agrees, and adds that while the current tests are usually accurate after a period of infection, many patients won't see the tell-tale bull's eye rash that accompanies the initial infection and may never seek treatment.

'They're trying to have more sophisticated testing. Right now they do the EIA [enzyme immunoassay], and they also do the Western Blot combination for confirmation they have to have both tests confirmed,' she said. 'The problem is people who often come right away with the bull's eye rash you empirically can go ahead and treat them, so we know there is sometimes under-diagnoses to the actual prevalence that occurs within our state.'

A sobering statistic is the fact that 49 percent of the cases in Maine report never seeing the rash, and similar to what NESCom's Batryn experienced, it's those cases where the unsuspecting victim can go on for months or even years without knowing they have it. At that point, the disease is often diagnosed anecdotally based on the symptoms. Still, Lyme disease can mimic so many other illnesses that drilling down to the root cause can be difficult.

'The sad thing is a lot of people don't go to doctors, and they think, Oh, it's just the common flu-like bug,'' Pinette said, adding that some who experience the early myalgia, muscle aches, fatigue and low-grade fever without seeing the bull's eye rash may brush it off as simply a low-grade flu. 'If you're untreated for a longer period of time you can develop an immune complex response where you have some tissue and neurologic damage.'

It could be this or that

Amanda McDonaldAmanda McDonald began working at Fort Knox in Prospect in the summer of 2010. A college sophomore at the time, she began feeling ill the following November with what she described as flu-like symptoms. What she didn't know was she had contracted Lyme disease, likely from a tick picked up from the grassy grounds of the expansive riverside park.

'I had never been bit by a tick that I knew of,' she said. 'The common sign is the rash and I never noticed one, but you can get them in your hair and other places you would never notice.'

With a cheery smile, the 22-year-old senior at NESCom describes herself as being a normally positive woman. Yet that joyful demeanor would be challenged in the winter of 2010 as the disease set in with its persistent flu-like symptoms that only continued and progressed for the next few years.

'I never was sick growing up, and for the past three years that's all I've been,' McDonald said.

That first winter was a tough one for her, where she experienced growing fatigue and muscle aches. However, as the diseased progressed over the course of the following year, her symptoms progressed as well. Experiencing everything from vomiting each morning to extreme fatigue and soreness in her muscles and joints, she still pressed on with her schoolwork and didn't think much of it beyond an unrelenting flu until her friends and family notice she wasn't quite right and had lost weight.

'I had probably lost 10 pounds,' she recalled. 'I've lost 30 pounds at this point.'

At her family's urging, what followed was a multitude of visits to doctors and specialists who suspected different illnesses based on her symptoms and treated those symptoms accordingly. The only problem for McDonald was her illness wasn't going away. If fact, it was only getting worse.

'It was just very hard to believe that no one could figure out what was wrong with me. I went to the hospital a lot because I would get what they called cyclical vomiting where I just couldn't stop throwing up, and it would last a week if I didn't go to the hospital,' she recalled. 'They didn't look at my overall symptoms. I felt like a lot of them specialized in one thing and that was the only thing they'd look at and treat me for that one thing. They were very quick to prescribe stuff, which I found kind of strange. It's like, Here, try this. If it doesn't work, we'll try something else.''

Tested for Crohn's disease, Lupus, and many other conditions with manifestations similar to Lyme, each negative result only added to her desperation and soon led to a period of misery in not knowing what was wrong her. And her constant battle with symptoms that had no answer got so bad that McDonald was taking eight different medications prescribed by different doctors. Her family's growing frustration and financial burden only added to her disappointments with every misdiagnosis, and there was even a period when she admits to obsessively searching the Internet to find a possible underlying cause of her symptoms. In the end, all of it was taking its toll on her mentally.

'I was actually treated for depression and anxiety,' she said of that period. 'I had never been a depressed or anxious person. That what I was feeling at the time, and I couldn't explain it and there was no reason for it. There was no family history of it.'

But it was by chance that a friend told her about the possibility of Lyme disease and recommended she see Dr. Zev Myerowitz in Holden. A chiropractic practitioner by trade, she learned he also practiced acupuncture, homeopathic and Chinese medicine and thought there was no harm in seeing him.

'I had been sick for three years and had seen multiple doctors every specialist under the sun so I thought it was worth a try. I had tried everything else,' she explained.  

McDonald said Myerowitz performed a few tests that were all non-invasive and involved simply taking her socks off. Within 20 minutes, he determined she was suffering from Lyme disease.

'I had been poked and prodded and given every other medicine by regular doctors. He just looked at me and told me I have Lyme disease. It was hard for me to believe,' she said.

McDonald was naturally suspicious of his diagnosis three years of misdiagnosis would do that and yet she wanted to see if he was right. In June she went for a Lyme disease test at the hospital and to her surprise, she tested positive.

'I wanted to see if he was correct or not before I started having him treat me,' she said of her suspicion. 'It did show up in the blood test.'

Because she didn't have the tell-tale rash that would have produced a referral for the test, the $600 price tag wasn't covered by insurance. Still, she finally had her answer and felt confident in Myerowitz' homeopathic and herbal treatment plan.

'Where I had waited three years and modern medicine hadn't cured me, I figured I'd try his route,' she said. 'If that didn't work, I'd do the antibiotics.'

Now a senior it's her second time around at that level due to falling behind at college she feels much better. Although some of the symptoms she experienced the past three years are still with her, including joint pain and the fact that she can't eat some foods that she used to, a subsequent test in October tested negative. And the missed weddings, holiday gatherings and other things she couldn't do as a college-aged student due to her illness are slowly fading into the past. She was even able to hike this past summer, an activity she couldn't even attempt before due to her exhaustion.

Yet she admits it has affected her life in ways that will take time to heal. It put her well-behind in school and while she didn't withdrawal from college, she dropped quite a few classes and those she did finish didn't fare as well as she wished. In looking back at her transcript, she's frustrated in knowing it has affected her college career.

'I think I still feel it in my bones,' she said, adding that the littlest hint of a cold nowadays gives her a twinge. 'I'm on edge but I'm good.'

The controversy of Lyme

The progression of Lyme disease in Maine, New Hampshire and across the nation has received much attention from health officials. In Maine, the passage of LD 1709, 'An Act to Enhance Public Awareness of Lyme Disease,' during the 124th Maine Legislature's emergency session in 2010 was in response to the increased incidence of the disease, which is now the second most-commonly reported infectious disease in the state.

Subsequently, Governor Paul LePage issued a proclamation declaring the month of May as Lyme Disease Awareness Month. And LD 1709 directed the Maine CDC to set up a tracking website dedicated to the disease, and expanded reporting of the diagnosis of Lyme and other tick-borne illnesses by insurance carriers operating within the state.

With all the positive steps to educate the public about the disease and preventative advice to avoid exposure, there is a controversy surrounding Lyme disease within the medical community itself regarding the definition and diagnosis of it. And from mainstream medical practitioners and specialists to those offering alternative healing, opinions differ as well on how to treat it and whether Lyme disease ends when the B. burgdorferi bacteria is no longer present in the body.

In the case of Mariana Batryn, McDonald's fellow student at NESCom, she still experiences bouts of peripheral neuropathy and memory loss to this day. For some patients who aren't diagnosed until years after infection, the resulting effects can be life-altering and have no apparent end. And in McDonald's case, some patients seek alternative treatments from providers at the fringe or outside mainstream medicine that reportedly prove just as effective as the standard antibiotic regiment recommended by nationally recognized guidelines.

They are questions that have some in the medical community stumped.

'In the lay community and a very small minority of physicians there's a discussion and concern regarding a whole host of symptoms that the infectious disease experts say may go beyond what they think is attributable to the disease,' said Sturrock. 'Unfortunately in medicine every 10 years or so we do see a condition get recognized as being a great concern and often there are practitioners who declare themselves experts in the treatment of that condition.'

Citing past examples of chronic mononucleosis and other relapsing conditions where patients felt traditional medicine was not meeting their needs, Sturrock said some patients turned to orthomolecular medicine treatments and therapies that concentrate on nutrition, vitamins and dietary restrictions and were largely unproven and based on unscientific evidence. 

'Those of us who have been in practice for 30 years or so see these waves of conditions that get identified as potentially having a real wide variety of symptoms and when the symptoms start including things like fatigue or chronic pain, then patients understandably are often very desperate and will seek out treatments that may or may not have been research-based.'

While he feels some patients truly believe such alternative treatments are effective, Sturrock said it may take years to see whether these therapies actually work and primary care physicians are often drawn into the middle of this gray area since they don't want patients to seek unproven and possibly dangerous treatments that aren't sanctioned by the medical community.

'We have a responsibility to patients we don't want them to seek treatments that might be either potentially harmful or financially disabling,' he said.

For Pinsky, much of the controversy has to do with misinformation about Lyme and other diseases that has no basis in scientific fact. Such misinformation had led to perceptions that Lyme is hard to diagnose and treat. 

'When Lyme disease was first described in the late 1970s, it wasn't even recognized as an infectious disease,' Pinsky said. 'It took some time to isolate the agent and know that it was infectious and know how to treat it.'

Pinsky insists B. burgdorferi and other spirochaetal diseases are not difficult to treat, and he agrees with Sturrock that the main issue in treating Lyme disease is the symptoms attributable to it sometimes have nothing to do with it. Instead, he believes people are told they have Lyme disease as the explanation of many debilitating symptoms and that may not be correct at all.

'There unfortunately are a number of providers in this state and other states that really treat irresponsibly and diagnose irresponsibly,' he said. 'It leaves the impression that it's difficult to treat but the response rates are no different than other infections we treat. All of us in infectious disease see this all the time. It's not their fault, they're just misdiagnosed. When you hear these stories and some of them sound terrible, it may not have anything to do with Lyme disease.'

Yet in the case of Batryn, who tested positive for the disease and still has complications today, Pinsky relents a bit and offers an alternate explanation for why her symptoms may persist.

'What most people don't recognize is that virtually all of the manifestations of Lyme disease, whether it's early or late, actually go away without treatment but if it isn't treated they're at risk for developing late nervous system complications like encephalopathy or peripheral neuropathy, which can be irreversible,' Pinsky explained. 'But the arthritis of Lyme disease, the meningitis of Lyme disease, which occurs fairly early after infection in the first few weeks to months, actually go away without treatment. But, the infection persists and if left untreated for a long time, it causes permanent damage like nervous system damage. That could be irreversible, but that's not really a failure of treatment. It's just that once damage occurs to tissue, you can't simply reverse that, especially with the nervous system.'

He offers the case of tuberculosis, an infectious disease caused by the pathogen Myobacterium tuberculosis that if left untreated will kill about 50 percent of its victims. Aside from the multiple drug-resistant strains that have dominated recent new reports, he said the disease is curable if caught within a period of time. If not, irreversible tissue damage can occur.

'You could successfully treat the infection, but if it's caused major lung damage, the damage has been done,' he said. 

Pinsky believes much of the diagnosis of Lyme disease relies on determining the facts of whether a potential infection has occurred. That has to do with identifying the manifestation of the traditional bull's eye rash, or erythema migrans (EM), and a subsequent test that shows the patient is in fact infected. Although it takes time for the body to develop antibodies to B. burgdorferi, Pinsky is confident in the test and that patients who have it are not missed.

Still, both Batryn and McDonald never saw the initial rash and didn't know they had even been bitten. And in Maine, about 49 percent of Lyme disease cases don't. Nationally, it's about 25 percent.

'There is a problem with that and there is a problem with the definition of Lyme disease. I think that's part of the reason the numbers look a little skewed,' Pinsky said. 'The surveillance definition has too little specificity in that regard. It's tough to get a perfect surveillance definition you make it too restrictive, you miss cases. You make it too non-specific, you get too many cases that are not real cases.'

A chronic disease or not?

Another part of the controversy surrounding Lyme disease is reports of Lyme disease that continue beyond treatment and when the pathogen is eradicated from the body. It's an agonizing condition some patients report and many in the mainstream medical community dismiss as not based on scientific fact.

But it was just that very problem that caused Bill Chinnock to take his own life.

The singer-songwriter and renowned rock/blues guitarist who hailed from New Jersey lived the final years of his life in Yarmouth. A founding member of the Asbury Park music scene in New Jersey, he was a band leader whose members would eventually form Bruce Springsteen's E Street Band. He is credited with writing the Emmy Award-winning song 'Somewhere in the Night' that served as the theme song for the daytime soap opera 'Search for Tomorrow,' and his song 'Hold On To Love,' a duet he recorded with Roberta Flack, also served as a theme song for the soap 'Guiding Light.'

For his wife, Terry, who is the daughter of the late country music singer Dick Curless and a Bangor native and graduate of Bangor High School, the years-long battle he had with Lyme disease mirrored her own experience with the disease, of which she's says has never gone away.

The couple married in 1976 and moved to Maine where they lived blissfully for years. Yet it was just after their first son was born in 1998 that Bill began showing the early symptoms of Lyme disease. By 1999, she did as well.

'When Bill and I were both ill, it was so bad,' she recalled. 'I couldn't drive a car, I couldn't count money out at the store I would just look at the money and not be able to count. It always felt like your fingers were in an electrical socket. And your head is so foggy that you have no attention.'

Their conditions got so bad that they traveled to Connecticut, Florida, Texas and even London to find out what was wrong. What followed was a period of misdiagnoses, ranging from multiple sclerosis and autoimmune disease to stress and depression. But it wasn't until they went to Dr. Linda Keniston-Duboc in Waterville that they finally had an answer. While they didn't have the B. Burgdorferi bacteria, blood tests showed they suffered from its two common co-infections.

Despite the prescribed antibiotics, the disease didn't abate and Bill's condition prevented him from working for a period of time that forced the couple to sell their home in Fairfield and eventually lose Bill's recording studio.

'We lost everything. We lost our house. Bill was so disabled he couldn't work. We went through our savings. We tried everything. It was like we were living a nightmare,' she said.

Feeling desperate and frustrated that mainstream medicine was not curing them, the couple even tried alternative treatment methods. Despite attempts with infrared light and even a Rife machine, an unproven alternative treatment involving electromagnetic energy, Bill couldn't get any better. Terry had her own issues as well, including a period where she couldn't even walk.

'Bill did everything under the sun except for the oxygen chamber,' she said. 'I was on an IV for two years taking Rocephin and Heparin that was pretty brutal.'

But it got to the point when Terry noticed that Bill was withdrawing and only getting sicker. She was concerned for him and both their sons.

'The last two years it was like he wasn't there anymore. He was just so sick,' she said, adding that while he was able to land a job at the high school, the job proved too difficult. 'He just couldn't function publicly. You're so sick you just want to die. You're not in your right mind. If I hadn't gone through it myself I could never have even imagined.'

It was in March of 2007 when Bill committed suicide. 

Today, Terry is raising two children while dealing with another bout of Lyme disease. She tested positive for the disease four months ago and determined she was likely bitten on what she describes as her tick-infested property in Yarmouth, which she's since had sprayed.

'I got brave enough to go in my backyard and wouldn't you know the odds of me getting bit again,' she said. 'I did all the precautions, I had riding boots on and tucked my pants in and it was a hot March day a couple of years ago and I helped my neighbor cut down an apple tree.'

The test, prompted when she found a tick on her this past summer, only validated what she already knew the recent decline in her health the past couple of years was attributable to Lyme disease from a tick that likely bit her two years ago. But it's the ongoing symptoms from her previous bout that haven't gone away all these years and those her husband experienced for nearly 10 years until his death in 2007 that has her troubled most.

'It's such a debilitating, strange disease because you look so normal it's just been a nightmare. I guess the thing would be how to get it under control in Maine,' she said.

A post-treatment syndrome 

The amount of misdiagnoses the Chinnocks went though is similar to what both Batryn and McDonald experienced in their search for answers. Yet the persistent symptoms after treatment are causing concern with some health professionals that realize Lyme disease many not end when the bacteria is killed.

'There are a number of longitudinal studies where people don't feel well for years after getting the disease,' said Dr. Joseph Breen of the National Institute of Allergy and Infectious Disease. 'I think that gets lost sometimes there's no question that people have long-term persisting symptoms.'

With such labels as 'Chronic Lyme disease' and 'Post-treatment Lyme Disease Syndrome,' Breen added that research has been growing in this area and some of it indicates there are lasting effects to the disease. 

'It's hard to predict but I think with more people looking at this problem, we'll see more advancements in detection,' he said. 'The clinical trials have shown that these people are suffering. What we don't know is if it's remnants of an infection that remains. Regardless, we just have to keep pushing hard to better understand it at all levels.'

Pinette of Maine's CDC recognizes that such a controversy exists, and her department's national counterpart has even set up a Web page of information for Post-treatment Lyme Disease Syndrome.

'That is what the medical community, the Federal CDC, and the Infectious Disease Society of America uses as terminology for patients who have been treated and still continue to have symptoms afterward,' she said. 'So that's where a lot of the controversy comes in because oftentimes people use the term Chronic Lyme Disease' and some physicians believe that you should continue to have treatment.'

Pinsky disagrees completely. Saying no such condition exists, he instead believes it is the result of providers who are attaching a label to particular symptoms in cases where the patient was never infected.

'There's no chronic Lyme disease,' Pinsky said. 'You'll find people who have fallen into these providers' practices and have become convinced that all of the symptoms they have are due to this entity of chronic Lyme disease even though many of these people have never had any evidence of having been infected with Borrelia burgdorferi.'

Yet he backs up when it comes to Post-treatment Lyme Disease Syndrome, which he says is most likely a continuation of the later-stage symptoms that Lyme disease sufferers experience although their treatment has ended and all signs indicate the bacteria is no longer in the body.

'It's not uncommon for people to have some persistent symptoms even after the infection is cured. But typically those symptoms last for weeks at the most, sometimes months and sometimes longer,' he said. 'But that's uncommon and it's usually non-specific symptoms. It's more like what we see with mono.'

Still, Pinette of the Maine CDC believes there is a problem that warrants more research and agrees there's a lot of fragmentation among providers about the subject.

'There's a possibility that it's an immune-complex thing and oftentimes there may be some tissue damage if they wait, and even if you do get treated with antibiotics for two or three months, there may not be that total reversal of your organ system that has been attacked,' she said. 'There is a lot of controversy out there regarding post-treatment Lyme Disease Syndrome and Chronic Lyme Disease so I think we need to continue to support research in this area so that we can find more answers. I think it's good the federal CDC is spending money on this to look into this more.'

Looking to the future

But it's still the misdiagnoses by providers that have McDonald, Batryn and Chinnock concerned about the future fight against Lyme disease. All went through countless healthcare professionals who couldn't find an answer, and all ended up having to find answers on their own against a tide of healthcare providers who told them otherwise. While much has to do with the similarities that Lyme disease symptoms have with many other autoimmune and inflammatory diseases, part of is seems to be that communication between doctors and patients that needs to be more honest, accurate and complete. If not, it breaks down amid frustration.

'I just wish the symptoms were more well-known. I didn't even know any of my symptoms were symptoms of Lyme Disease,' McDonald said, adding that at least one of her doctors in the past could have explored it. 'I would have never thought I had Lyme Disease.'

Sturrock agrees, saying that primary care providers are the front-line defense and oftentimes may not associate Lyme disease with patients who don't exhibit the early Bull's eye rash of Lyme disease, are asymptomatic or have later-stage symptoms that can mimic other diseases. But he also admits the medical community doesn't have all the answers and there's still much to learn about the disease. For him, though, it comes down to an open dialog and trust between patients and their physicians.

'It helps when you have a good doctor-patient relationship,' he said. 'I think that's a responsibility on both parties' parts.'

Last modified on Wednesday, 27 November 2013 00:39

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