New York resident Holly Ahern is a professor emerita of microbiology, a researcher working on improved diagnostic tests for Lyme disease, a member of state and federally convened working groups that examined all aspects of Lyme-infection associated chronic illness, and the mother of a Lyme disease patient.

In the following guest opinion in Syracuse.com, she offers a thoughtful response to an earlier article that overlooked important, established information about Lyme disease.

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Lyme disease patients turn elsewhere because medicine has failed them

by Holly Ahern

Lyme disease is a complex illness caused by a bacterium whose ingenious life strategy doesn’t match the classic model of how bacterial infections affect human physiology.

Although we all want to believe that the current one-size-fits-all medical guidelines represent an evidenced-based framework to guide diagnosis and treatment — quite frankly, they don’t.

Health care providers continue to rely on and defend practices that may work for a small percentage of Lyme disease patients, but leave the majority in limbo.

Patients seek “nontraditional methods” of treatment from “functional providers” because the longstanding guidelines directing diagnosis and treatment have failed many people over many years.

First, the legend. Fifty years ago, a researcher at Yale University identified an outbreak of a previously unrecognized bacterial infection and named it Lyme disease. A diagnostic test was developed. Antibiotics became the standard treatment for this disease. Treatment-resistant cases were noted in nearly half of diagnosed cases, and were treated with more antibiotics. Persistence of the bacteria after treatment was acknowledged. Transmission during pregnancy leading to adverse outcomes was discovered and researched.

Then early research progress stalled, and by 2001, Lyme disease became known as a disease that was “hard to catch and easy to cure.”

A conflict developed between patients and researchers that resulting in patients being labelled “Lyme loonies” by the retiring NIH official who in 2007 oversaw federally funded Lyme disease research in the U.S. And it’s apparent from the opinions previously expressed that medical mislabeling of Lyme disease patients with persistent illness continues to this day.

Yet, not so hard to catch

There are more than 500,000 diagnosed Lyme disease cases a year in the U.S., so obviously it’s not all that hard to catch. A significant percentage of those cases will have persistent and debilitating symptoms that last for months to years, so it’s not so easy to cure, either. That’s the truth.

And now the myths, starting with the one about how Lyme disease is easy to diagnose because almost everybody knows they were infected by a tick bite and show up to their doctor with a unique, bull’s-eye shaped rash that enables early diagnosis and curative treatment.

Here’s the science behind that medical myth. In the early years of research into Lyme disease, a handful of epidemiological studies proclaimed that over 70% of diagnosed cases started with this rash.

Research bias

However, all of those early studies relied almost entirely on the bull’s-eye rash for case determination, a strong research bias that should be apparent to all. From newer research it’s clear the bull’s-eye rash isn’t the diagnostic tool it was thought to be.

Fewer than half of all Lyme patients recall the tick bite, and 40% report seeing no rash at all. Only 10% of rashes are actually shaped like a bull’s-eye. Not such a great clinical sign after all.

Then there are the diagnostic tests, which starting 40 years ago were acknowledged as being not all that accurate. Yet today we’re still using those same tests. Positive results are often disregarded as “false positive” and those patients go untreated. Negative test results can’t be used to rule out a diagnosis of Lyme disease. Huh?

With regard to symptoms, numerous published studies point out that symptoms are variable. Women experience Lyme disease differently than men. Men are more likely to develop the bull’s-eye, give a positive diagnostic test result and experience more obvious symptoms.

Women are significantly less likely to develop the rash or test positive with the current two-tier testing approach, and more commonly experience non-specific symptoms like fatigue, headache, heart palpitations, vomiting, photophobia and higher severity of memory loss and psychiatric issues.

Which means men get treated, and women get referred.

Early diagnosis is often missed

Since the rash is unreliable, symptoms are variable and the tests don’t help, early diagnosis is missed more often than not. And late diagnosed patients, who are more often women, are at a higher risk of becoming chronically ill. That’s the truth.

Which brings up treatment. Because Lyme disease is a bacterial infection, the recommended treatment is a short course of one oral antibiotic. But Lyme isn’t caused by your typical bacterium, and that treatment doesn’t always work. The longstanding assertion that additional antibiotic treatment isn’t warranted, because there’s “no evidence” that it works, needs to be balanced with the reality that there is “no evidence” it doesn’t, either. There’s just not enough evidence, period.

The truth is more federally funded, well-designed clinical studies that aren’t designed to just reinforce what investigators want to believe, are desperately needed. An update to outdated Lyme disease medical school curricula appears to be needed, as well.

Republished by permission of the author.