BURLINGTON, Vt. -
Tests for Lyme disease are hit and miss and there's a lack of consensus about how long the disease can remain active in an infected patient. Some doctors feel it's appropriate to treat patients based on alternate tests and clinical diagnoses, while the majority of the medical community remains skeptical of that approach.
For 2013, the Vermont Department of Health confirmed 674 cases of Lyme disease, labeled another 219 cases as probable, while dismissing 438 cases as suspect or invalid. The number of confirmed and probable cases represents a 71 percent rise over the previous year, and factors in Vermont carrying the nation's second-highest infection rate per 100,000 people. The tick-borne bacteria is spread all across the state, with the disease most commonly appearing in Vermont’s south and northwest.
"It is certainly the most commonly reported tick-borne disease and the rates have been increasing in Vermont, as they have been in our neighbors as well," said Erica Berl, an epidemiologist with the Vt. Department of Health.
Berl says confirmed and probable cases of Lyme disease spiked in July. That's because the population of adult deer ticks declines, but the number of baby ticks, known as nymphs, balloons.
"They're less likely to be seen, in fact, they're half as likely to actually be carrying the spirochete, but they just tend to go unnoticed for longer periods of time," said Berl.
Even with the surge in reports, the state says like the ticks, infections can go undetected.
Some patients and a small community of doctors contend many of the worst cases with long-term physical and neurological symptoms are rejected by the medical establishment.
"I have to tell you that the patients I see from Vermont, Massachusetts and Maine, have been uniformly ignored by their doctors," said Dr. Steven Phillips, who exclusively sees Lyme patients at his practice in Wilton, Connecticut.
Out-of-staters typically arrive at Phillips' doorstep following years of testing and doctor visits without a diagnosis for their ailments. He criticizes establishment doctors for following guidelines set by the Centers for Disease Control, which the agency itself states are for reporting, not diagnostic purposes. His patients have generally tested negative for the disease by that criteria and have been told by their primary care doctors that the disease cannot remain active for more than a few weeks.
"I suspect all Lyme tests to be honest, I think that they're a flawed technology," said Phillips.
He says the bacteria strains in Lyme are hard to culture. Most of his patients receive a Lyme diagnosis, which Phillips bases on clinical observations and test results. For some, Lyme isn't their biggest problem; it's a separate, co-occuring tick-borne infection. He says long-term antibiotics generally work, though courses can run years. Vermont's state experts don't subscribe to that practice and say antibiotics should only be prescribed for a few weeks following a probable infection.
Reporter Kyle Midura: Does long-term Lyme disease exist?
Erica Berl: Most people who get Lyme disease will be treated very successfully with antibiotics and go on and not have any symptoms, but there are about maybe up to 20 percent of people who will have some lingering symptoms that can take months to resolve. There is no good evidence that people who have ongoing symptoms have an ongoing infection.
Midura: What does that mean then, what are those symptoms borne out of if not a lingering infection?
Berl: We don't really know. Maybe perhaps it's an auto-immune type of disorder or due to the damage that the Lyme disease caused from the infection when it was active.
Berl says the state worries over-prescription could lead bacteria to become more resistant and to potential side effects for patients.
"If there was good data showing antibiotics were effective, than we would know that that's the appropriate course of action, but that data is lacking," said Berl.
"First of all, it's still standard of care to give doxycyclene, tetracyclene and minacyclene to kids with zits for acne, for long periods of time, for years; nobody raises the concerns about antibiotic resistance there," Phillips said.
When we asked Berl if more research is needed for long-term Lyme, she didn't feel comfortable weighing in.
Phillips presented us with an 81-page paper he wrote from when he presented the case for chronic Lyme disease to Congress in 2008.
"The data is overwhelming, and I'm not exaggerating that one bit. It's not a religion, it's not a belief. It's about the science, so this is actually a black and white issue," said Phillips.
Phillips says standards set by the Infectious Disease Society of America concluding no evidence of long-term Lyme runs counter to studies. He provided several citations including work done by the authors of those standards. Phillips noted work indicating that in Lyme endemic areas, up to 10 percent of the population could have asymptomatic Lyme, which may surface decades down the road. Phillips says research indicates a human gene could drastically alter a person's chances of developing symptoms associated with a Lyme infection and may explain why some show no effects while others are debilitated.
Vt. Health Commissioner Dr. Harry Chen did argue against a change in the law protecting doctors who treat Lyme disease with alternate methods. Chen was asked several times to speak for our special report, but he was not available.
In terms of the increasing tick populations and the spread of Lyme disease experts say one theory is that with a lack of widespread agriculture in the Northeast, forests are re-establishing themselves, for more habitat and deer to feed on.
Climate change's effect on the length of winter has also been proposed as an explanation, as has changes in land management practices over the centuries.
The real answer could blend all of those theories.