Lyme disease on rise amid diagnosis, treatment controversy
NORTHAMPTON, Pa. — Jill Wichner was walking by a mirror on a cruise ship in 2007, when she noticed a red, bull’s-eye rash on the back of her upper arm.
It was about the size of a large thumbprint, and grew in diameter over the vacation.
The Northampton resident later learned the rash was the signature sign of Lyme disease, which, along with two other tick-borne infections, grew to affect her health and life over the last decade. Wichner didn’t remember being bitten by a tick — like fewer than half of those who’ve been bitten.
Lyme disease is caused by Borrelia burgdorferi, bacteria that are carried and transmitted to humans by black-legged ticks, commonly known as deer ticks. The U.S. Centers for Disease Control and Prevention estimates about 300,000 people are diagnosed with Lyme each year, and the numbers have been on the rise locally and across the country.
The federal agency and most doctors agree that people who are treated early and appropriately usually are fine. But dealing with the disease is more difficult for Wichner and a growing number of people who identify themselves as members of the Lyme community.
Wichner said she felt fine after she noticed the rash, but some people with Lyme experience early symptoms such as fevers, headaches, and joint and muscle pain. It can also affect the nervous system and heart.
Infectious disease specialist Dr. Ronald Goren said it’s important that doctors recognize the various stages of Lyme, and consider it when making a diagnosis.
“For the average case (of Lyme), especially this time of year, we’re going to be seeing more of it, and early. It’s just a matter of being aware, that it’s warm and people get bit by ticks,” said Goren. His Northeast Philadelphia practice, Infectious Diseases Associates, works with several area health systems, including St. Mary Medical Center in Middletown.
Members of the Lyme community call the disease the “great imitator” because of the broad range of later symptoms, such as digestive problems, joint conditions and cognitive issues, that can sometimes lead to misdiagnoses. The CDC says between 60 percent and 80 percent of people get the rash within a month after being infected with Lyme, but some studies suggest it could be fewer.
Most doctors, the Infectious Diseases Society of America and the International Lyme and Associated Diseases Society — the two medical associations that have issued competing and controversial care guidelines for Lyme — agree that antibiotics such as doxycycline are appropriate after the rash appears. However, the two associations disagree on how long treatment should last, and what can happen afterward.
“It didn’t hurt, didn’t itch,” Wichner, 43, said of the rash. She showed photos to a primary care doctor when she returned from vacation, but was told she’d be sick if she had Lyme.
“I really didn’t think any more of it,” Wichner recalled. “Looking back now, I could strangle myself because I usually analyze things — a little too much sometimes — and had I done more research back then, I might have avoided becoming chronic.”
Chronic Lyme, also known as post-Lyme disease syndrome, is controversial. The CDC and the infectious diseases society say more research is needed on chronic Lyme, but the society doesn’t recommend long-term antibiotics to treat the disease. The international Lyme society argues on its website that the risks from Lyme outweigh the risks of long-term antibiotics.
About a year after the rash appeared on her arm, Wichner said she became light headed, broke out in sweats, and her vision was fuzzy.
“It was like someone flipped a switch,” she said. “It hit me at work, and by the next afternoon or the next evening, my husband was taking me to the emergency room.”
Doctors there told Wichner she had a urinary tract infection, but she said she didn’t have any common symptoms associated with one. As Wichner got sicker, other doctors told her she was stressed or had PMS.
“I was gray — my skin was a grayish green. I was visibly shaking. I could barely stand up,” she recalled of one visit. “No one could figure out what was wrong.”
Testing for Lyme
Eventually, Wichner saw a rheumatologist who said the bull’s-eye rash and the possibility of Lyme couldn’t be ignored and gave her doxycycline.
She tested negative for Lyme eight times before one test ordered by a doctor specializing in Lyme came back positive. It also found evidence of other tick-borne coinfections, bartonella bacteria and a parasite called babesia, she said.
“I think of all the people who have this who don’t have a rash, because not everyone gets the rash,” Wichner said. “It took me four and a half months to get diagnosed, having proof of an expanding bull’s-eye rash, so I can’t even imagine — having not had that — how much more difficult it would have been.”
Lyme is diagnosed primarily based on such clinical findings. The CDC doesn’t recommend tests for patients who are bitten by ticks but don’t have symptoms of Lyme. The tests don’t detect the bacteria, called spirochetes, but rather the antibodies that are produced in response to the bacteria. That means false negatives are possible if tests are done too early. It also means the tests can’t tell doctors when the bacteria have been eradicated because the antibodies remain.
Goren also said the tests are hard to interpret, which can result in false positives.
Several factors make it difficult to develop a reliable test for Lyme, said Dr. Garth Ehrlich, an expert on molecular diagnostics and a professor of microbiology and immunology at the Drexel University College of Medicine.
“One is the fact that oftentimes when people get bitten by a tick and they get sick, we don’t know if it’s Lyme disease in the narrow sense — in that it’s just Borrelia burgdorferi (bacterium) — or whether the tick was carrying other organisms, or both,” Ehrlich explained, noting that there are many strains of Borrelia burgdorferi as well.
Wichner initially was relieved to get a positive test and diagnosis, she said, “but that’s when the real fun started.”
The controversy over the disease has led to the creation of what she described as a “secret community” of “Lyme-literate doctors.” They specialize in Lyme and its coinfections, but they could face disciplinary actions from licensing boards that don’t accept the treatment the doctors provide.
Wichner admitted she was worried about being diagnosed and treated for Lyme if she didn’t have it.
“As a patient, what are you supposed to do?” Wichner said. “You might have very reputable doctors talking to you and telling you they are adamant about what they think is going on, but no one is in agreement, so you’re just lost.”
But Lyme-literate doctors don’t always have answers, either. Treatment options are “extensive,” according to guidelines from the international Lyme society, so decisions must be made on a case-by-case basis.
“The patient has to become informed, whether they like it or they don’t like it,” said Pat Smith, president of the Lyme Disease Association. “They must know their disease or their diseases. If they don’t, it’s less likely that they’re going to get the right treatment. And this is very sad to me; it shouldn’t be this way.”
Four decades have passed since Lyme became widely recognized and more should be known about Lyme, its diagnosis and treatments, said Smith, who has led the national nonprofit for half that time.
“These (Lyme-literate doctors) are real pioneers in their field. And instead of getting the trashing that unfortunately they’ll get from (the infectious diseases society) or some government agencies, in my opinion they should be getting medals,” Smith said.
But Goren and others don’t agree with the treatments some of those doctors use.
“There have been studies where (doctors have) given (patients) a month of antibiotics and nothing changes. They use drugs that are not approved for the treatment of Lyme, they put IVs in . and it’s a bad, bad deal,” he said.
Goren doesn’t doubt that patients are dealing with something, but in most cases, he said, it’s not chronic Lyme.
“Before, it was chronic mono, then it was chronic fatigue. There’s a group of people who we really don’t know what they have and there’s never been a good answer to what they have,” he said. “They get ascribed to things and we just don’t know what’s wrong.”
Wichner said she was put on several oral antibiotics and the treatment lasted a little more than a year.
“I truly thought I was going to die. I was debilitated. I lost my independence. I couldn’t chew food. I couldn’t walk,” she said, noting she still takes supplements to help her immune system stay strong. ” … I have these astronomical medical bills which are paid for mostly out of pocket because the insurance companies refuse to cover what they think is unnecessary treatment for a nonexistent illness.”
“You’re fighting on all fronts,” Karen Meyers, co-leader of the PA Lyme Resource Network Bucks County Region said of dealing with the disease after she and both her children were diagnosed. “You have to find the doctor, you have to figure out what to look for, who to go to, you have to deal with the school, and meanwhile you’re hemorrhaging money.”
Network co-leader Evelyn Throne formed the Lower Bucks Lyme Disease Support Group after dealing with many of the same things when her son-in-law developed Lyme and coinfections nine years ago. “I realized how alone I felt and how alone we all felt in this. … And I didn’t want anybody else to feel that alone,” said Throne, a Middletown resident.
The goal of the statewide network, which is to unite support groups in Pennsylvania and increase awareness and education, is starting to be realized, said Montgomery County Region leader Lee-Ann Gordon. Gordon, a nurse, knew what most medical professionals know about Lyme when her daughter was diagnosed in 2013 after being sick for nearly a decade.
“It was a whole range of emotions,” the Franconia resident said. “I felt terrible because I felt like I should know more.” Then Gordon said she got angry and decided to get involved with PA Lyme to help promote more awareness and education among medical professionals and the public.
May has been designated as Lyme Disease Awareness Month in Pennsylvania and New Jersey.
Smith said Lyme awareness is increasing because cases are increasing and advocates and the Lyme community have demanded more information and attention from government agencies. Some have responded, but that wasn’t always the case, said Smith, a Bucks County native who lives in Monmouth County, New Jersey.
“(Government agencies) could have prevented, I believe, many, many of the cases if they had spoken out over the first 20, 25 years,” she said.
Wichner said she hopes the increase in awareness continues, and she’s begun helping others through online support groups and social media.
“Do not give up,” Wichner said she tells people. “If you’re seeing a doctor and that doctor is blowing you off or telling you it’s all in your head, or telling you, you look fine, run.”
Wichner is no longer on antibiotics, but said she still deals with fatigue and “brain fog” that affects her memory. She also fears ticks and getting sick again, saying it took her a long time to work up the nerve to walk in nearby Tyler State Park.
“I can’t let this just completely take over my life. I can’t live in a bubble,” she said. “But when I do go, on the inside, I’m scared to death.”
Taking care of ticks
One of the best ways to avoid Lyme disease and other tick-borne infections is to avoid ticks.
The insects love to hide in grassy, wooded and leaf-covered areas. They crawl rather than fly or fall from trees, said Evelyn Throne, co-leader of the PA Lyme Resource Network Bucks County Region.
Not all ticks carry Lyme, but if they feed on infected animals, including mice, they can transmit the disease to humans and animals. Chris Hellwig, health education director at the Burlington County Health Department, said mice populations can provide an indication of what the tick season will be like — and this one is expected to be bad.
Hellwig said property owners can reduce ticks on their property by keeping mice and other animals away. Researchers also have looked at methods of reducing ticks and Lyme by treating deer-feeding stations with pesticides and putting vaccines in rodent bait boxes.
Other methods, like widespread pesticide spraying, aren’t practical or effective, said Phil Smith of the Bucks County Health Department’s Bureau of Environmental Health. He coordinates the county’s West Nile virus program.
“Lyme disease is widespread and is much more of a problem than West Nile or Zika virus is at this point. But there is no effective means of getting rid of the tick without getting rid of everything else,” Smith said.
Counties like Bucks and Burlington can target where to spray for mosquitoes, but spraying for ticks is more complicated. “You have got to be very careful when you’re putting a chemical out in the field,” Smith said.
Owners can spray their properties with chemicals, but landscaping methods also can help, Hellwig said. They include keeping grass mowed and removing brush and leaves so ticks don’t have dark, wet places to hide, and creating a barrier with wood chips or mulch along tree lines, where ticks are more prevalent.
Burlington County’s Health Department focuses on raising awareness of Lyme and other tick-borne infections, and has made prevention a goal of its most recent Community Health Improvement Plan. “We chose that because Lyme disease is one of the biggest disease burdens here in the county as far as infectious diseases,” Hellwig said.
Prevention is Throne’s passion. “You don’t have to cure what you don’t catch,” she said.
But it’s not always possible to keep ticks away or to stay out of areas where they may be, so staying in the middle of trails, wearing light-colored clothing so ticks can be seen, throwing clothes in the dryer on high heat after coming inside, and treating clothing or skin with chemicals that kill or repel ticks, such as permethrin or DEET, are just some of the methods Throne said can help keep them from biting.
People should use caution year-round, Throne said, but ticks are most active in the spring when they’re in the young nymph stage of their life cycle. That’s also when they can be the most difficult to spot during tick checks, because they’re about the size of a poppy seed.
Ticks love to find dark, moist areas to feed, so look in the hair, groin, armpits and under waistbands. If one bites, use pointy tweezers to grab the mouth parts that are embedded in the skin and pull up slowly to keep it from breaking apart or leaving behind fluids or tissue.
The longer ticks are attached, the greater the risk they can transmit infections they carry, Throne said.
Confirmed Lyme cases rising
Pennsylvania has led the country in the number of reported Lyme disease cases for the last several years, and health officials warning this will be another bad season.
According to provisional data released by the U.S. Centers for Disease Control and Prevention late last year, Pennsylvania had more than 12,000 cases in 2016. In 2015, the state had more than 9,400 confirmed cases of Lyme, according to data from the Pennsylvania Department of Health — up from about 3,800 cases in 2010, nearly 4,300 cases in 2005, and more than 2,300 cases in 2000.
And for the first time in 2015, the Pennsylvania Department of Environmental Protection found the ticks that carry Lyme disease and the bacteria that cause it in all 67 counties in the state.
Phil Smith of the Bucks County Health Department’s Bureau of Environmental Health said the number of reported cases have been on the rise at the county level. Bucks had 457 cases in 2016, Smith said, and another 15 cases were reported as of the end of March.
State health departments report about 30,000 people are diagnosed with Lyme disease each year, mostly in the Northeast and in the Midwest around the Great Lakes, according to the CDC.
But in 2013, the federal agency admitted that number is low due to under-reporting and other factors. Based on data from labs that test for Lyme and analysis of insurance claims, plus a survey of the public, the CDC estimated the actual number is about 300,000 each year.
“We know that routine surveillance only gives us part of the picture, and that the true number of illnesses is much greater,” Dr. Paul Mead, chief of epidemiology and surveillance for the CDC’s Lyme disease program said in a news release at the time. “This new preliminary estimate confirms that Lyme disease is a tremendous public health problem in the United States, and clearly highlights the urgent need for prevention.”
In 2015, there were more than 38,000 reported cases in the United States, according to the CDC, bringing the actual number to about 380,000.
New tests on the horizon
Dr. Garth Ehrlich, a professor in the Drexel University College of Medicine, believes a new test for Lyme disease will be a “game changer.”
Researchers at the Translational Genomics Research Institute in Arizona recently announced a crowdfunding campaign to begin human trials for the LymeSeq test, which has been shown to detect the DNA of multiple strains of Borrelia burgdorferi, the major coinfections and even other infections such as influenza. The research has been funded, in part, by Focus On Lyme, an organization started by the mother of a young woman diagnosed with the disease.
Nikhat Parveen, associate professor of microbiology, biochemistry and molecular genetics at the Rutgers University School of Medicine, also developed a test that has been shown to detect Lyme and other co-infections using molecular beacons that emit colored lights that distinguish between different types of DNA.
For example, suppose researchers assigned purple beacons to the bacteria that cause anaplasmosis, Parveen said. “If you don’t have that pathogen there will be no purple light,” she explained.
Parveen published the results of the initial experiments in mice in 2009, and earlier this year, she published additional research on the use of the test to detect Babesia in blood samples from patients at hospitals in three New Jersey counties.
Not only did the research suggest a rise in cases of Babesiosis, but it also concluded that using the test “will provide rapid, efficient and sensitive diagnostic of babesiosis and will facilitate design of proper treatment regimens.” The method even could be used to screen blood donors to reduce the risk of transmitting Babesia through donated blood, according to the published paper.
Parveen is continuing her research, but she said the test is now waiting for a company that can license it and seek federal Food and Drug Administration approval to take it into the field.
Senate bill would address medical bills
State Sen. Stewart Greenleaf, R-12, recently reintroduced legislation that would require health insurers to cover treatments, including short-term and long-term antibiotics or antimicrobials, for Lyme and co-infections.
Licensing boards would retain the power to ensure patient safety, but Senate Bill 100 would remove the possibility of disciplinary actions against doctors for using such treatments.
Bill opponents have argued it would cost too much to provide long-term antibiotic treatment, but Greenleaf said analyses from other states have indicated the impacts on premiums would be pennies per month.
The bill has been in the Senate Banking and Insurance Committee since January. Greenleaf has written letters and spoken with his fellow senators on the committee, but said there’s no indication if or when they’d vote on it.
The Republican, whose district includes part of eastern Montgomery County and Bucks County, has been sponsoring legislation addressing awareness and other issues related to Lyme since 1988.
“This is a pandemic that nobody knows about,” Greenleaf said. “The people who are involved in this issue know about it, but the general public doesn’t.”
Coinfections also cause for alarm
Lyme disease isn’t the only thing ticks can transmit.
“One bite, depending on where you are, can produce any number of diseases, this is what makes it so problematic and so difficult for our docs to diagnose,” said Pat Smith, president of the Lyme Disease Association, a national nonprofit.
In the U.S. alone, different types of ticks in different places can cause more than a dozen diseases and conditions, and more are being discovered.
Some of the common co-infections found in ticks in the area include anaplasmosis, which is caused by Anaplasma phagocytophilum bacteria, bartonellosis, which is caused by the same bacteria as Cat Scratch Disease, and babesiosis, which is a malaria-like illness caused by a parasite called Babesia.
The black-legged tick, or deer tick, which is the most common in the area, also has been found to carry the rare, but serious, Powassan virus.
There have been only about 75 cases of Powassan reported in the United States over the last 10 years, but the numbers are increasing, according to the U.S. Centers for Disease Control and Prevention. So far, one case has been reported in Pennsylvania during that time, and three cases have been reported in New Jersey. A recent case involving a 5-month-old baby in Connecticut has brought more attention to the disease.
The bite of the Lone Star Tick, which is also found in this area, can cause an allergy to red meat, which Cheryl Paganelli found out in 2012.
The 64-year-old Medford resident took her grandson for a cheeseburger at dinnertime, and went into anaphylactic shock later the same night after she had gone to bed.
“I woke up and I said, ‘Something’s not right.’ I couldn’t breathe. I knew something was wrong,” she said, adding that she had red hives all over her body. “It was like I was boiled in water.”
Paganelli’s daughter, Lisa King of Mount Laurel, who is a nurse, gave her an injection with an EpiPen and got her to the hospital. An allergist later confirmed the allergy, which is caused when the body reacts to a substance in the tick’s saliva known as Alpha-gal.
“This is scary stuff,” Smith said of the allergy, “and it’s increasing in numbers.”