Angèle’s Wings PhotographyProtestors and Lyme awareness advocates hold signs in during a 2014 Mayday Project demonstration in Arlington, Virginia, in front of the Infectious Disease Society of America. The group would like the IDSA to revise the Lyme Disease treatment guidelines.

Angèle’s Wings PhotographyProtestors and Lyme awareness advocates hold signs in during a 2014 Mayday Project demonstration in Arlington, Virginia, in front of the Infectious Disease Society of America. The group would like the IDSA to revise the Lyme Disease treatment guidelines.


It’s been mistaken for Fibromyalgia, Lupus, Chronic Fatigue Syndrome, Multiple Sclerosis, signs of depression and Lou Gehrig’s Disease (ALS). Some patients have been told it’s “all in your mind,” or “you’re trying to get attention.” 
For some who suffer from its long list of symptoms, the journey from tick bite to treatment of Lyme disease can take years and include dozens of doctors.
If diagnosed quickly, however, a six- to eight-week course of Doxycycline antibiotics could effectively treat the infection caused by bacterium Borrelia burgdorferi. 
But, according to Paula Jackson Jones and Angèle Rice, co-founders of Midcoast Lyme Disease Support and Education, too many doctors are fearful of treating Lyme disease. Current guidelines by the Infectious Disease Society of America, which are endorsed by federal and state Centers for Disease Control, are not effective, they charge. 
In order to more effectively treat Lyme, doctors would have to exceed the standard treatment of no more than four weeks of antibiotics.
That standard, according to Dr. Sheila G. Pinette, newly promoted chief health officer for the Maine Department of Health and Human Services, is based on significant studies by the National Institute of Health. She notes, though, that “doctors can treat 

May is Lyme Disease Awareness MonthHealthy Living will look at what life is like for one Bath family living with chronic Lyme disease. Read about Angèle Rice’s story in the May edition. Here she is with her husband, Jonathan Rice, in 2013.

May is Lyme Disease Awareness MonthHealthy Living will look at what life is like for one Bath family living with chronic Lyme disease. Read about Angèle Rice’s story in the May edition. Here she is with her husband, Jonathan Rice, in 2013.

differently.” They may make adjustments based on their clinical diagnosis, and some will treat Lyme with a shorter course of antibiotics; others may opt for a longer treatment. 
“If treated within the first 30 days,” she said, “it’s almost always two to four weeks of Doxycycline, two times a day.”
There are some Lyme advocates, including in the Mid-coast, however, that do not feel the standard treatment is long enough.
“How doctors treat patients with suspected Lyme infections needs to change so as to avoid potential long-term illness and suffering,” stated a July 2014 release from the International Lyme and Associated Diseases Society. ILADS released its own updated guidelines “for the treatment of Lyme and other tick-borne infections, which call on physicians to provide evidence-based, patient-centered care for those with Lyme disease.”
The new guidelines, “Evidence Assessments and Guideline Recommendations in Lyme Disease: The Clinical Management of Known Tick Bites, Erythema Migrans Rashes and Persistent Disease,” call current antibiotic protocols used by many physicians to prevent or treat Lyme disease “inadequate, leading to an increased risk of Lyme disease developing into a chronic illness.”
“Chronic manifestations of Lyme disease can continue long after other markers of the disease, such as the Erythema Migrans rash, have resolved,” lead author Dr. Daniel Cameron explained in the August 2014 edition of the journal Expert Review of Anti-infective Therapy. “Understanding this reality underlies the recommendation for careful follow-up to determine which individuals with Lyme disease could benefit from additional antibiotic therapy.”
Dr. Pinette respectfully disagreed, noting that ILADS is “an organization that has a different approach and is not as ‘evidence-based’ as the IDSA.”

Need for education

Angela Coulombe and Amy Levasseur, co-founders of LymeBuddies, recently joined Rice and Jones at The Times Record to discuss Maine’s Lyme epidemic and steps their organizations are taking to educate the public and raise awareness. 

History of Lyme Disease

Lyme disease gets its name from a small coastal town in Connecticut called Lyme. In 1975, a woman brought to the attention of Yale researchers an unusual cluster of more than 51 cases of mostly pediatric arthritis. In 1977, Dr. Allen Steere and Yale colleagues identified and named the 51 clusters “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 such as possible neurological problems and severe fatigue. In 1982 the cause of the disease was discovered by Dr. Willy Burgdorfer. Dr. Burgdorfer published a paper on the infectious agent of Lyme disease and earned the right to have his name placed on the Lyme disease spirochete now known as Borrelia burgdorferi.

SOURCE: Division of Infectious Disease, Maine Center for Disease Control & Prevention

In May, which is Lyme Disease Awareness Month, the two Maine Lyme organizations are planning a weekend of education and action.
On Saturday, May 2 — the first of what Jones and Rice hope will be an annual event — the Midcoast Maine Lyme Disease Support and Education Conference will take place at the Wiscasset Community Center from 8 a.m. to 5 p.m. The free conference will feature experts in the field and a variety of vendors. For information, visit www.midcoastlymediseasesupport.
The next day, runners and walkers can lace up to raise funds and awareness during the fourth annual Jimmy the Greek’s Maine Mall 5K for Lyme Disease Awareness in South Portland. Registration begins at 7 a.m. The race begins at 9:30 a.m. and circles the Maine Mall complex. Registration details are available at
“In my experience, since I’ve been diagnosed, there’s more and more people who are becoming diagnosed, but there still remains the same amount of information and help available to us out there,” Coulombe told The Times Record. 
She noted that as more people are diagnosed — whether they recently contract the disease or have been sick for years and finally have a diagnosis — “they don’t know where to turn to because they’ve already been down so many avenues, they’ve already spoken to so many specialists, or they’re newly diagnosed and they don’t know what to do and they’re scared and frightened.
“They’re not getting a lot of information by other resources,” she continued, “but something like this (conference), we’ve come to realize as a group, is a really important public awareness service to offer to educate, get support and try to help people.”  

Extensive study

Dr. Pinette explained that the Maine CDC’s primary focus is on education as well as prevention. But the CDC also endorces medical treatments based on IDSA guidance. 
According to Pinette, those guidelines were developed based on four large double-blind studies conducted by the National Institute of Health, dating to 2001. 
In part, those studies looked at the effects of antibiotics as a treatment, and concluded that there was no evidence to suggest extended antibiotic treatment would be beneficial. Although two of the studies suggested there was some improvement in severe fatigue with prolonged antibiotic therapy, no improvement in cognitive function was observed.
A 2008 study noted a slight cognitive improvement three months after a 10-week course of IV ceftriaxone, but by the six-month mark, results were similar to the placebo group. 
“In addition, adverse effects attributed to IV ceftriaxone occurred in 26 percent of patients,” the study explained. “The authors conclude that because of the limited duration of the cognitive improvement and the risks involved, 10 weeks of IV ceftriaxone was not an effective strategy for cognitive improvement in these patients, and more durable and safer treatment strategies are still needed.”  
Pinette explained that if people are treated within 30 days of infection, most do well. If symptoms are allowed to go beyond three months before treatment, though, there is a hypothesis that there may be an immune response and neurological disorders, and the body cannot fight it off. That can lead to “Post Lyme Disease Syndrome,” a term that is sometimes replaced with “chronic Lyme disease.”   

Hard to get treatment

Jones and the rest of her group have been critical of the at-large medical community’s resistance to treat Lyme beyond the IDSA and CDC guidelines, noting that some doctors have even been reported for putting patients on longer-term antibiotics in order to treat the disease.
In 2006, for example, according to the Lyme documentary “Under My Skin,” Dr. Joseph Jemsek of North Carolina had his license suspended. He was later sued by an insurance company for $100 million and was forced to close his practice.    
Because many doctors do not want to treat Lyme patients in Maine, Rice and Jones explained, people are forced to leave the state to get care from “Lyme literate” doctors in New Hampshire and other states. 
In Lyme-awareness circles, the term refers to those caregivers who “fully educate themselves about this disease, who have gone the extra mile and understand how complex it is to diagnose and treat,” explained Jones, adding that they “understand that it’s not just what the tests say.” It’s about what other symptoms are indicating. They are “open to utilizing all of the treatment options that are out there for the betterment of the patient. They’re ‘Lyme literate.’”
While some are medical doctors, there are “Lyme literate” osteopathic, naturopathic and chiropractic doctors as well. But, they note, you will not find a directory of Lyme literate doctors. You can easily find any number of lists detailing specialists for various cancers and other diseases, but Rice explained that Lyme literate doctors are hard to find in Maine.

Tests are not always accurate

Prevention of
tick-borne diseases

Limiting exposure to ticks reduces the likelihood of any tick-born disease infection. In persons exposed to tick-infested habitats, prompt careful inspection and removal of crawling or attached ticks is an important method of preventing disease. 
It may take several hours of attachment before microorganisms are transmitted from the tick to the host.
It is unreasonable to assume that a person can completely eliminate activities that may result in tick exposure. Therefore, prevention measures should be aimed at personal protection:

• Wear light-colored clothing — this will allow you to see ticks that are crawling on your clothing.

• Tuck your pants legs into your socks so that ticks cannot crawl up the inside of pants legs.

• Apply repellents to discourage tick attachment. Repellents containing permethrin can be sprayed on boots and clothing, and will last for several days. Repellents containing DEET can be applied to the skin, but will last only a few hours before re-application is necessary. Use DEET with caution on children because adverse reactions have been reported.

• Conduct a body check upon return from potentially tick-infested areas by searching your entire body for ticks. Use a hand-held or full-length mirror to view all parts of your body. Remove any tick you find on your body.

SOURCE: Maine Center for Disease Control

Often when a person is ill, simple blood tests can be used to determine the cause. When it comes to Lyme disease, though, tests are often not reliable, said Levasseur. 
“They’re less than 50 percent accurate,” she said.
And that’s part of the problem. In addition to unreliable testing, the “classic symptoms” are only present in a small percentage of chronic Lyme disease cases, making it harder to conclusively diagnose.
Individualized blood tests can be processed through local labs, in conjunction with your doctor, Pinette explained. 
Another company, California-based IGeneX Inc., has been specializing in Lyme disease and associated tick-borne diseases for more than two decades, and offers an extensive panel of tests that some suggest may be more comprehensive.
But bloodwork is only one part of the diagnostic process.
IDSA guidelines, according to Jones, tell doctors they should be “looking for a tick to have been on you a certain amount of time. They’re looking for a bulls-eye. They’re looking for a specific symptoms within a certain amount of time,” she said. “So they’re painting this picture that very few actually present with everything all together. And that’s what throws the doctors off. Many people don’t even know they’ve been bitten or have a rash.”
Symptoms can vary by person. According to Johns Hopkins Arthritis Center, early manifestations of Lyme can include Erythema Migrans (rash) in about 60-80 percent of people, but less than 40 percent will have a rash resembling a target, or the classic bulls-eye. Other symptoms can include fever (30-40 percent of cases), chills (30-40), flu-like symptoms (less than 50), headache (40-50), stiff neck (30-40), myalgias (40-50), polyarthralgias (40-50) and fatigue (40-50).
Among several mid-term manifestations — showing weeks to months after a tick bite — is meningitis in the overall central nervous system (CNS) or peripheral nervous system (PNS) in 10-20 percent of cases. 
If Lyme goes undiagnosed for months to years, late manifestations can include painful arthritis in up to 60 percent of untreated patients, encephalopathy (brain dysfunction) and polyneuropathy (nerve degeneration).
In some cases, Jones explained, a person could have been bitten years earlier, and if he or she has a strong immune system, they might not show symptoms. 
“But years later you encounter something very traumatic that compromises your immune system and then all of a sudden, boom,” she said. “Everything flares up because it’s been laying dormant in you.” 

Legislation should help

A law signed by Gov. Paul LePage in 2013, “An Act to Inform Persons of the Options for the Treatment of Lyme Disease,” required, in part, that physicians tell patients of their options for treatment, in addition to the results of their Lyme testing. 
Levasseur alleges that many doctors fail to do so, adding that they are also supposed to inform people that a negative test result doesn’t necessarily mean you don’t have Lyme disease. 
“Doctors are supposed to let you know what your treatment options are,” she said. “They oftentimes only give you the IDSA treatment, but don’t tell you about the other (ILADS) standard of care.”
ILADS has spent millions of dollars studying Lyme and alternate treatment options. 
“They have researchers that have checked into all of these things and they have found that ticks can transmit sooner than the CDC and IDSA say they can,” Jones explained. “Not everybody gets a bulls-eye, some people get a rash, and the rash looks funky. When I got mine, it looked like somebody splattered it along my side. I didn’t see a bulls-eye. I wasn’t thinking it. But I did become symptomatic.”
Technically, the IDSA guidelines do allow a doctor who deems it necessary to exceed the standard care guidelines to offer a different, or longer, course of treatment based on the individual case. But, Jones claims, many doctors are not aware of it because it’s what she characterized as “the small print” of the guidelines. 
Part of her organization’s reason for the conference is to help educate medical staff about their rights to treat Lyme. 
Jones said “the small print” in the IDSA guidelines state: “These guidelines were developed and issued on behalf of the Infectious Diseases Society of America. It is important to realize that guidelines cannot always account for individual variation among patients. They are not intended to supplant physician judgment with respect to particular patients or special clinical situations. The Infectious Diseases Society of America considers adherence to these guidelines to be voluntary, with the ultimate determination regarding their application to be made by the physician in the light of each patient’s individual circumstances.”    
Jones, Rice, Coulombe and Levasseur interpret that to mean Maine doctors would be justified to put a chronic Lyme patient on long-term antibiotics, for example, if they feel it is justified by the clinical diagnosis. But, they say, most doctors are not aware of this. 
Some won’t go beyond initial treatment because of criticism or judgment from peers and due to medical disciplinary action others have faced, the four women allege. There is also some concern that long-term treatment could lead to antibiotic-resistant bacteria.
A bill before the Maine Legislature this year, LD422 “An Act to Improve Access to Treatments for Lyme Disease,” presented by Republican Rep. Deborah J. Sanderson of Chelsea and co-sponsored by, among others, Mid-coast Democratic Sen. Christopher Johnson, “prohibits the Board of Licensure in Medicine from disciplining a physician or revoking or suspending a physician’s license for prescribing, administering or dispensing long-term antibiotic therapy to a patient with acute, persistent or chronic Lyme disease if the therapy was pursuant to a treatment plan recommended by the United States Department of Health and Human Services, Centers for Disease Control and Prevention that considered the patient’s individual circumstances or was in the best judgment of the physician with respect to the particular patient or special clinical situation.”
Should that bill become law, it may lead to more doctors being willing to treat Lyme disease without fear of repercussions.  

Be your own advocate

Last summer, Dr. Pinette was on TV discussing the rise of Lyme disease cases and how it’s a statewide epidemic, Jones explained. 
“She was pushing for people to advocate for themselves. If you go to the doctor and you don’t get treated the way you feel you need to be treated, or you get treated and you’re still sick,” Jones recalled, Pinette urged people “to keep going back, to keep advocating for yourself.” 
On May 1, 2014, she and Dr. Stephen Sears, the state epidemiologist, issued a Maine Public Health Alert Network System advisory regarding Lyme disease. The three-page alert included general information and resources on diagnosis, and how to report findings, but unless doctors devote the time needed to wade through the numerous links and cross-references, they may not always be up to speed on changes to treatment. 
The alert, for example, included a link to a case study with a reference to “the small print” Jones interprets to mean doctors can go beyond the standard treatment if they deem it necessary. 
“It’s really hard for people to advocate for themselves when they’ve been going to the same primary care doctor for years and years and years and they’ve treated you for all these other things, and now there’s this one thing they can’t treat you for because they don’t understand it,” Jones said. “It’s serious enough for the CDC to classify it as an infectious disease; it needs to be treated as such. It needs to be studied … doctors should be made to go and take further education about it because it evolves. (Flu shot manufacturers) evolve vaccines for the flu from year to year. This disease evolves as well, and they’re still using outdated sources for diagnosing, for treating, for even giving doctors direction.”

Under reported

An August 2013 report by the Center for Infectious Disease Research And Policy at the University of Minnesota, stated the CDC estimates about 300,000 Americans are sickened each year by Lyme disease, “which is about 10 times higher than the number of cases reported, according to an analysis of the latest information.”
The report went on to note that “the latest estimate is in line with studies published two decades ago that suggested the true number of Lyme disease cases is three to 12 times higher than the number reported.”
The CDC reports Maine with 1,127 confirmed cases in 2013 with another 246 listed as probable. It has an incidence rate of 84.8 cases per 100,000 people, the third highest in New England behind Vermont (107.6) and New Hampshire (100.0).  
Pinnette told The Times Record in a March 10 phone interview that she believes the numbers of Lyme cases are under-reported. The latest figures to reach her office for 2014 were 1,388 reported cases. The previous record was 1,376 set in 2013. 
“We know they’re under estimated,” she noted, explaining that the CDC only gets figures as doctors report them. In some cases, doctors may not realize it’s Lyme and could be treating the patient for something else initially. 
She did say, however, that the highest rates of infection tend to be with boys ages 5-12 and males age 45 and older. 
“Boys play outside and in the woods,” she said. It’s important for parents to continually check them, “because they won’t check themselves.” 
In addition, a lot of men work outside and hunt in the woods, making them susceptible to picking up a waiting deer tick, she explained. It can be difficult for people to check themselves properly.
Though it used to be the assumption, a cold winter does not necessarily mean fewer ticks. Pinette explained they are less active when the temperature is below 45 degrees, but they can still survive in the ground under the snow.  
The CDC suggests thoroughly checking for ticks under the arms, in and around the ears, inside the belly button, behind the knees, in and around the hair, between the legs and around the waist. 

It’s not just Lyme

While a doctor tries to reach a diagnosis, it’s common to discover that the patient may have one or more co-infections as well. 
Lyme is the most common vector-borne disease in Maine, the CDC alert announced. 
The alert noted that cases of Anaplasmosis, Babesiosis and Powassan are also reported. Unless specifically tested for, however, they too can be hard to find. Some of their symptoms include fever, headache, malaise and body aches for Anaplasma. Babesia symptoms include extreme fatigue, aches, fever, chills, sweating, dark urine and possibly anemia. Signs of Powassan include fever, headache, vomiting, weakness, confusion, loss of coordination, speech difficulties, seizures, and encephalitis and meningitis.
Co-infections can obviously compound the difficulty of treating chronic Lyme. In 2013, there were 94 cases of Anaplasmosis, 36 of Babesiosis and one of Powassan. Other tick-borne co-illnesses, such as Rocky Mountain Spotted Fever, Ehrlichiosis, Q Fever, Tick Paralysis, Bartonella and Tularemia, are reportable throughout the U.S.
It seems to be getting better as states are passing legislation to actually allow doctors to treat their patients as they see fit, based on their clinical history and symptoms, Levasseur said. 
New Hampshire, Connecticut, Massachusetts, Rhode Island, Vermont and New York all have laws protecting doctors who treat Lyme. LD422 would make Maine the final New England state to protect its doctors in this manner.
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