Are Lyme disease cases up or down on Cape? Pandemic undermines tick disease reporting.

The COVID-19 pandemic has put a crimp in state and federal surveillance of tick-borne diseases, a health scourge endemic to this area that local officials and patient advocates say is already vastly underreported.

The state Department of Public Health told the Times that in 2020 there were only six confirmed cases of Lyme disease in Barnstable County on Cape Cod — along with 397 “suspect” cases of Lyme disease.

The picture looks even rosier for the Bay State, according to the Centers for Disease Control and Prevention.

A CDC historical data table shows only seven confirmed and probable cases of Lyme disease in Massachusetts in 2019, the last year for which it has figures.

Neighboring Rhode Island, by way of comparison, had 971 cases during that period even though its population is only a fraction of the size of Massachusetts, according to the CDC.

“Absurd does not even begin to categorize it,” Larry Dapsis, Barnstable County entomologist, said about the federal statistics.

“It is laughable in a very painful way,” said Dorothy Leland, spokesperson for LymeDisease.org, a patient advocacy group based in San Ramon, California.

Dapsis, coordinator of the Cape Cod Cooperative Extension’s Tick Project, said he doesn’t want residents or visitors getting the idea that Lyme disease isn’t a problem on Cape Cod.

“Let me tell you, it is,” Dapsis said.

This year seems to be particularly bad for encounters with the deer tick that spreads Lyme disease and other dangerous tick-borne bacterial illnesses, including babesiosis and anaplasmosis.

“More people were calling me earlier in the spring than years past," he said. "They didn’t realize tick season is already in play. I thought it was pandemic related. People were getting outside to avoid cabin fever.”

Lisa Freeman, a Brewster resident and president and founder of the Cape Lyme Advocacy Support Program, said she received many calls this year from people sickened by tick- borne disease looking for help getting treatment. 

“Ticks were bad, too,” Freeman said.

She said she suspects Lyme disease case counts are especially unreliable for 2020 because COVID-19 made people fearful of going to hospital emergency departments, and access to primary care physicians was limited.

“Folks weren’t going to the doctor,” Freeman said.

Leland heard several stories about people only being tested positive for Lyme after repeated negative results for COVID-19 tests. Lyme and COVID-19 can have similar symptoms, including fatigue, muscle pain and headaches.

“People are rightfully concerned about COVID. But unfortunately sometimes they stop looking (for Lyme) until later,” she said. They realize, 'Geez, I’m still sick,'” she said.

The reality is that tracking Lyme cases “has been a huge problem for decades, really,” Leland said.

“The current surveillance system is broken,” she said.

The CDC admits as much on its website describing its Lyme disease data and surveillance efforts.

While the agency said states reported 34,945 confirmed and probable cases of Lyme disease in 2019 — a 4% increase over 2018 — it also said that recent estimates “using other methods suggest that approximately 476,000 people may get Lyme disease each year in the United States.”

The latter figure is nearly 14 times the number of reported cases — a whopping epidemiological discrepancy.

Henry Lind, who has headed a Barnstable County working group on tick-borne disease, said the new figure is based on insurance claims and payments as reported by the CDC’s Division of Vector-Borne Diseases in two companion pieces in the February edition of the journal Emerging Infectious Diseases.

To get a more reliable sense of Lyme disease cases in Massachusetts, Lind said people should turn to the number of “suspect” cases now reported by the DPH, which are based on positive laboratory test results.

In information supplied by the DPH at the request of the Times, the state reported 10,311 suspect cases of Lyme disease in Massachusetts in 2020, including the 397 cases in Barnstable County on Cape Cod.

Confirmed and probable cases only came to 165 or so for the state, according to the DPH.  

The suspect caseload, though much higher, has been on the decline on the Cape for several years.

The DPH said it fell from 736 in 2016 to 697 in 2017 and further declined to 540 in 2018 and 583 in 2019.

Dapsis said he’d like to think the declining numbers for Barnstable County reflect reality — and the scores of tick-borne disease workshops he has put on in recent years, including dozens of virtual programs during the pandemic.

“I hope it’s due to our education efforts,” Dapsis said.

But as long as there are problems with Lyme disease reporting, he said he won’t know for sure.

Deirdre Arvidson, Barnstable public health nurse, said she has counted 217 confirmed, probable and suspected Lyme cases in Barnstable County in MAVEN, the state’s infectious disease reporting system, between June 1 and Aug. 31 this year.

Lyme disease can range from a flu-like condition in early stages to joint point pain and long-term pain, neurological and cardiac conditions, patient advocates say.

There also have been 88 cases of babesiosis, a tick-borne malaria-like disease that can cause severe illness and death, reported in that same time period. 

The CDC requires additional clinical information beyond positive test results to categorize Lyme cases as confirmed but a DPH official said the state stopped conducting individual case follow-up in 2016.

In the contorted world of Lyme disease counting, that means there are a lot of Bay State cases the CDC is not reporting. The federal agency dropped Massachusetts case counts from 2,922 in 2015 to 146 in 2016.

Massachusetts is one of "a number of states with a high incidence of Lyme disease (that) have modified surveillance practices in an effort to manage the increasingly high burden of case investigations for a disease that has long been well-established in these areas," Katie Fowlie, press officer for the CDC's  National Center for Emerging and Zoonotic Infectious Diseases, said in an email.

"Given their modified surveillance practices, their cases no longer meet the criteria for reporting to CDC. Nevertheless, they are still considered a high incidence state (due to historical cases reported and ecology)," Fowlie said.

A DPH official said physicians are encouraged to provide clinical material that would meet surveillance guidelines.

But for many physicians, it's too cumbersome a prospect.

Dr. Brian O’Malley, a retired physician in Provincetown, said he kept a stack of fax forms on his desk to report Lyme cases to the state, but “a lot of doctors don’t bother to fill out the paperwork.”

“That’s a very labor intensive process,” Leland said. She said COVID-19 has probably slowed it down even further.

“If (doctors) didn’t have time to do that stuff before they certainly don’t now.”

Besides recording suspect cases of Lyme disease from positive lab results, the DPH now maintains a publicly accessible Monthly Tick Report Page of the tick-borne disease rate as seen and diagnosed by hospital emergency departments.

The information available on the DPH’s website shows that rates of tick-borne disease are now highest in Western Massachusetts and on Martha’s Vineyard and Nantucket, followed by Barnstable and Plymouth counties.

While the report provided up-to-date information for the public, some Cape officials said it would be of more value if the information was broken down by the types of different tick-borne diseases — instead of lumping them together — and included information from sources besides emergency departments.

“I think depending on the emergency departments is going to give a skewed picture,” said O'Malley, who represents Provincetown on the Barnstable County Assembly of Delegates.

“People’s willingness to go to the emergency departments is very geographically independent. Here it’s an hour’s trip. I think that’s problematic.”

“I don’t believe I ever sent a patient to the ED with a tick bite. I dealt with them,” O’Malley said.

Officials from Lymedisease.org said much of the turmoil over Lyme disease reporting could be resolved with tests that meet criteria of patients and public health officials.

“The tests are lousy,” Leland said.

“If you could get a slam dunk early Lyme disease diagnostic test — that’s what we really need.”

State officials said surveillance reporting of different tick-borne illnesses has been delayed, in part because of the pandemic.

Dapsis, who used to rely on DPH town and county reports of different tick diseases to shore up his education program, said he’ll now be turning to Barnstable County's Arvidson for the number of positive test results, since she has access to the MAVEN system as a public health nurse.

“I just want the information to see if our program is working, or do I have to enhance it.”

Lyme disease can range from a flu-like condition in early stages to joint point pain and long-term pain, neurological and cardiac conditions, patient advocates say.

It’s important that the public know there are steps they can take to protect themselves, Dapsis said.

“People move here for retirement. I get calls from people who are going to be tourists here,” Dapsis said.

“I don’t discourage people from coming to the Cape. But I tell them you’ve just got to be mindful of your environment. One bite can change your life.”