"It’s hard to catch, but easy to cure."
That’s what many U.S. physicians tell their patients about lyme disease. The first part of that statement is true; lyme disease is difficult to diagnose. It’s often, however, also very difficult to treat. That, the number of cases reported to the Centers for Disease Control (CDC) each year, and a number of other diseases carried by ticks, and we’re facing a major public health crisis.
Maps of reported cases of lyme disease on the CDC website make clear that the Northeast is the big hot spot for Lyme in the U.S., but the disease is widespread across the county. "Lyme disease is the third-most common infectious disease out of 80 that the CDC keeps track of," said Holly Ahern, an Associate Professor of Microbiology at SUNY Adirondack. "It’s No. 3 in terms of the number of new cases each year, and there are other tick-borne diseases that aren’t lyme but are just like it." All of this adds up to making tick-borne diseases in general, and lyme disease specifically, more of an epidemic than HIV is.
Although the first cases of lyme disease were identified in Connecticut in the 1970s, this is not a new disease; it was documented in the United States before the 1970s. What is new, however, is the number of ticks that are infected by the bacteria.
"The populations of those ticks have increased and expanded," Ahern said. "Now they’re in half of all counties in the United States. The microbes have always been here, but now their delivery vectors have vastly expanded."
The process by which doctors make a diagnosis only identifies about half of the patients who actually have lyme disease. "It’s a very subjectively interpreted test," Ahern said. "There are 10 markers. If you have five of the 10 markers, you have lyme disease. If you have four of the 10 markers, you don’t. This is a test that’s interpreted by a person looking at it. If they see something there but they don’t think it’s quite made it to the level of positive, it’s called indeterminate."
So, if the person interpreting the test says, "I see something but I don’t think it’s Lyme so I’m going to call that not there," you’ll still be trying to figure out what’s wrong months later. "People who are told they do not have lyme disease are not treated for it, and as a result the bacteria disseminate and cause pretty much a permanent infection," Ahern said.
To understand why this kind of misdiagnosis is such a problem, we need to understand how the bacterium that causes lyme disease, named Borrelia burgdorferi, operates. This bacterium is shaped like a corkscrew, so it can "drill" into tissue and infect any part of the body. It can change its form and "hide" from antibiotics or become inactive and live through an antibiotic treatment that would wipe out any other bacterium.
If you’re infected by this bacterium, Ahern said, you have about 30 days before the bacteria are out of your bloodstream and into tissue, and have started colonizing there. "This means that the only time the standard antibiotic treatment for lyme disease is effective is in that early window," she said. "If you are not treated in that 30-day window, the bacteria are no long susceptible to standard antibiotic treatment. Ten to 20 percent of people who are diagnosed and treated early still end up with long-term debilitating symptoms." But if you are infected, your body won’t produce antibodies that are detectable by the serological tests for lyme disease for the first 4 to 6 weeks you’re infected, which means hitting that treatment window can be challenging.
One problem is that the medical community hasn’t caught up with what’s known today.
"They still don’t have anything better than three weeks of oral antibiotics," Ahern said. "After that, they say it can’t possibly be lyme disease and there’s something else wrong with you.” This is not a criticism of doctors, Ahern hastens to add; the bacterium is just far more sophisticated than anything they’ve run into before, and the protocols to treat it aren’t developed yet.
PROGRESS BEING MADE
Progress is being made in the treatment of lyme disease. "Since about 2012, we’ve been able to engage legislators to help us with this," Ahern said. "In 2015 there was legislation proposed that led to the creation of the Tick-Borne Disease Working Group, which was convened by the Department of Health and Human Services (HHS) in 2017." The group includes doctors, researchers and, for the first time, patients and advocates.
In December 2018, the Working Group submitted a report to Congress that evaluated the current state of research and information about tick-borne diseases.The National Institutes of Health (NIH) now has used that report to develop a strategic plan. Once the NIH publishes a strategic plan, Ahern said, they generally follow through on funding the programs necessary to implement it, so the Working Group is hopeful that we will see progress in the near future.Sen. Susan Collins (R-ME), Sen. Tina Smith (D-MN), and Sen. Angus King (I-ME) have sponsored the TICK Act, which would establish a national strategy for dealing with tick-borne diseases. As of early November, the TICK Act was in the Senate for deliberation and voting. Sponsors in the House are awaiting its passage; a lyme disease caucus is ready to move forward with making sure the bill passes.
"I’m hoping that with the Tick-Borne Disease Working Group, and with NIH saying, 'We’ve got to do something about this,' and if the TICK Act makes it into law, that will make a very positive difference," Ahern said. "At the moment, you’re still going to have to advocate for yourself and be knowledgeable and be aware. But the page is turning. Science is going to lead the way to new things, and I think it will be soon. I’m not talking ten years from now; I’m talking within a year or two."
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