There’s progress on recognizing long Lyme, CanLyme president tells  U.S. podcast

A new report by an American scientific advisory organization may help doctors and politicians to think more seriously about long-term Lyme Disease, says the President of the Canadian Lyme Disease Foundation.

Janet Sperling made the comment in a recent wide-ranging interview on Tick Boot Camp, a long-running podcast.

In her conversation with co-hosts Rich Johannesen and Matt Sabatello, Sperling noted that the National Academies of Sciences, Engineering, and Medicine released the ground-breaking report earlier this year. It calls on the medical community to use the term “Lyme Infection-Associated Chronic Illness” or Lyme IACI to scientifically describe long-term sickness following a Lyme infection.

“The take-home message there is that it [chronic or long-term Lyme] is a real disease,” she says. “We need to learn more about it and we need to start treating it even if we don’t understand everything there is to know about it.”

Sperling says that while there is increasing interest in Lyme at the federal level in Canada, it’s still difficult to persuade government health officials and some doctors that Long Lyme is a serious problem. “We don’t have any improvements in guidelines, things like that,” she says. “Now I’m hoping that… we’re going to get some positive feedback at the level of government.”

Sperling says there is no fixed definition of when acute Lyme becomes chronic, but “we consider early localized Lyme is days to weeks, early disseminated is weeks to months and chronic is months to years.”

She told host Rich Johannesen that part of the reason some doctors don’t take chronic Lyme disease seriously is because they tell returning patients that there is nothing wrong with them. The patient never goes back, leaving the doctor to think the patient realized they weren’t sick after all.

Also complicating the diagnosis, she said, is the possibility that Long Lyme could be a polymicrobial disease – that is, it could involve bacteria or viruses other than Borrelia burgdorferi, the bacteria that causes Lyme infection. 

“I think that of the complicated cases where people don’t get better right away, I would look first for co-infection,” she says. The challenge is finding a doctor who is willing to figure out what co-infections an individual patient could be dealing with and willing to treat both the co-infection and the Borrelia. 

In response to a question from Johannesen, Sperling says it’s theoretically possible to contract Lyme disease from sources other than the bite of a black-legged tick, also known as a deer tick. For example, another insect, such as a horsefly, could theoretically transmit the infection if it has previously bitten another infected person. Other possible routes might include transplants of infected organs or mother-fetal transmission. But the risk of any of these is very small. 

“Without any doubt, the tick is the most efficient, which is why we put so much effort on avoiding the tick attachment. And if you avoid the tick attachment, you’re avoiding Lyme disease.”

If a tick does take hold, she told co-host Matt Sabatello, it’s important to respond as quickly as possible. A pair of fine-point tweezers works well for pulling the tick straight up off the skin surface without causing it to spew infected liquid into your bloodstream. For squirming children who might be frightened of tweezers, a special grooved plastic tick-removal tool does the same job, quickly scooping the invader off the skin.

CanLyme sells tick-removal kits, complete with three specialized tools, containers to safely store ticks for testing and instructions for removal and identification of the pests.

For testing, CanLyme recommends using a company called Geneticks. The private lab, which has offices in Ontario and New Brunswick, can determine if a tick is carrying pathogens in as little as 24 hours. “It’s also a social enterprise, which means that they’re not just for profit,” Sperling says.

Prevention remains one of the most important parts of the battle against tick-borne illness, Sperling told the podcasters. While black-legged ticks are found across Canada, there are hot spots where it pays to take extra precautions. Eastern Canada, particularly New Brunswick, as well as southern Ontario and Quebec have especially high concentrations. Geneticks, with support from CanLyme, provides a handy free series of maps and charts showing where ticks have been reported and what pathogens they carried. Checking the map helps raise awareness of the problem, Sperling says.

Sabatello noted that CanLyme also helps fund Lyme research through its Venture Grants program, including a test for detecting Lyme infection in animals such as horses, mice, and ducks. That test could eventually be further developed to test humans.

“They’re basically pilot projects, because we’re not a huge foundation,” Sperling says. “But the idea behind the Venture Grants is, ‘Let’s give people enough money to get started, especially if they can train a student.’ Because a student then will carry on and continue throughout their career keeping in mind that Lyme disease is real.”

Sperling says she would like to see CanLyme continue to grow the number of Lyme-literate practitioners in Canada to help directly support people suffering with the disease.  

“There’s a huge need for people to have their reality actually understood by other people.”