Mary Beth Pfeiffer, an investigative journalist from Ulster County, N.Y., is author of “Lyme: The First Epidemic of Climate Change” (Island Press).

By Mary Beth Pfeiffer | Special to Syracuse.com

In one week recently, a Hudson Valley woman died from a paralyzing virus and an Ontario, Canada, boy suffered meningitis, both from the bite of a disease-toting tick.

This year, in Central New York, conservatively hundreds will be infected with tick-borne diseases in a growing, and uncontrolled, medical crisis. Since 2014, Lyme disease cases alone have doubled in six area counties, to nearly 500 in 2017 – or, more accurately, as many as 5,000 when under-reporting is considered.

We live in an era in which going outdoors is risky. But this unfolding epidemic – of which Lyme disease is but a significant part -- has been made worse by failures of government and medicine.

Don’t fault doctors, who have been told only the rules of Lyme disease, not the significant exceptions. Blame the medical society, the Infectious Diseases Society of America, that has crafted, promoted and fiercely defended the guidelines governing Lyme care. Blame the U.S. Centers for Disease Control and Prevention, which has endorsed an unhealthy status quo that governs treatment worldwide.

We have been told: Watch out for ticks. They can infect.

We have not been told: Tests fail. Treatments may not work. Doctors know little about treating advanced Lyme cases, malaria-like babesiosis or potentially fatal and growing Powassan virus.

I thought I knew Lyme disease in 2012 when I began research as an investigative reporter in the Lyme-rife Hudson Valley of New York. What I knew were the myths of Lyme disease, which infected more than 400,000 Americans in 2017.

Myth #1: The test works.

Compare pregnancy to Lyme disease. The first is a rapid yes-no diagnosis revolutionized by in-home kits. For Lyme disease, we use a 25-year-old, two-part test that is unreliable and difficult to interpret. First, you need a sufficient load of generic antibodies. Then, you must register “bands” on a test strip for specific antibodies. Say you get four of a required five bands. You are declared Lyme-negative. A woman is never a little bit pregnant.

Scientists reviewed the universe of Lyme test studies — 78 in all — and concluded, remarkably, there wasn’t enough evidence “to make inferences about the value of the tests.” Another analysis found the tests predicted Lyme disease just 54 percent of the time.

Myth #2: Lyme is over-diagnosed.

About three dozen scientific papers have warned doctors not to needlessly prescribe antibiotics because of the potential for false Lyme positives. But wait: If the tests can be trusted, why do we have this problem at all? And what about patients who actually have the disease but are failed by a bad test?

This is a disease in which a missed diagnosis can be life-changing. Mothers have told me of months of schooling and childhood lost to Lyme disease, which is most prevalent in boys 5 to 9 years old.

While antibiotics should be used judiciously, the line that has been drawn on Lyme disease has made doctors fearful of treating early or well.

Myth #3: But you get the rash.

Optimistically, the skin rash that signals Lyme infection without a test shows up in 60 percent to 80 percent of cases. But that means up to 170,000 patients did not get the rash in 2017 (using estimates that say there are 10 cases for every one reported).

And the rash looks like a classic “bull’s-eye” in only a tenth of cases -- so variable that patients may be told it’s a spider bite or cellulitis, especially in a milieu that warns of over-diagnosis.

Myth #4: 10 to 28 days of antibiotics kills the bug.

Yes, antibiotics cure -- if you’re lucky enough to clear diagnostic hurdles and get early treatment. But even in that rarified group, up to a fifth of patients remain symptomatic for a year -- and 1 in 20 after 15 years. People who are treated later fare worse, with studies implicating Lyme disease with brain inflammation, nerve and joint damage, and poor quality of life.

For two decades, a battle over why some patients stay sick – are they chronically infected or not? – has overshadowed a growing and expensive epidemic.

The IDSA, which is being sued in federal court over Lyme disease care and has proposed updated but inadequate guidelines, says the test and antibiotics work. The other side, including university scientists supported by nonprofit groups, has published findings showing that the Lyme bug outwits medicine’s best tools, leaving behind adaptive, shape-shifting “persister” cells. These residual Lyme cells may explain a lot – but only with a major infusion of government-funded research.

“Neither side has enough data to assure they are right,” Garth Ehrlich, a renowned Drexel University scientist, told me. But “orthodoxy has just killed research in Lyme disease.” There’s little urgency to solve a problem medicine won’t acknowledge.

Today, when a month of antibiotics fails and a patient goes back to the doctor, they are told:

“I don’t know how to help.”

“I followed the guidelines.”

“You may be sick, but not with Lyme disease.”

Patients need and deserve better answers than that.

Chart: Lyme disease cases in Central New York (Source: NYS Department of Health)

County 2014 2015 2016 2017 Cayuga 7 11 7 20 Cortland 14 11 25 46 Madison 7 17 29 67 Oneida 41 89 33 96 Onondaga 130 127 31 128 Oswego 35 51 76 125 Central NY 234 306 201 482

Related: Upstate, ESF aim to be national leaders in fighting Lyme, other tick-borne diseases