Phyllis Mervine prepared the following remarks as public comment to the federal Tick-Borne Disease Working Group. Due to phone connectivity problems, however, she was unable to deliver them herself. Therefore, at April 27’s online meeting, they were read to the panel by LymeDisease.org’s Dorothy Leland.

It’s been hard in recent weeks to even think about Lyme disease. The coronavirus has infected close to a million Americans and killed over 50,000 so far.

But this pandemic will not stop the nymphal tick season. It’s already underway here in northern California and many other parts of the country.

And there’s every reason to believe that at least 300,000 new cases of Lyme disease will occur in the US this year—per the CDC’s estimate.

Last week, the NIH announced its COVID-19 treatment guidelines.

This was a surprise to us—because at one of these Working Group meetings, Dennis Dixon, who represents the NIH on this panel, told us that his agency does not DO guidelines.

That’s apparently changed. Now, since NIH DOES do guidelines, we could use some for Lyme disease.

NIH guidelines for Lyme disease could help us bridge the divide between treatment recommendations from ILADS and the IDSA.

What COVID-19 guidelines say

Furthermore, here are three significant points in the NIH’s COVID-19 guidelines:

They point out that there are “insufficient clinical data” to recommend either for or against using certain drugs for the treatment of this disease.

They say, “at present, no drug has been proven to be safe and effective.”

Therefore, they also state—quote—“Treatment decisions ultimately reside with the patient and their health care provider.”

All three of those statements about COVID-19 absolutely should be applied to Lyme disease—but currently are not.

NIH Guidelines could also remind the medical boards—those that hover over Lyme doctors’ every move, scrutinize their practices and threaten their licenses—that just as for COVID-19, “treatment recommendations in these Guidelines should not be considered mandates.”

Like COVID-19 patients, people with Lyme need treatments now. Clinical trials are expensive and take too long, and our last one was 20 years ago. Also, Lyme disease research receives less federal funding than leprosy, which has 200 cases per year.

With limited treatment options, patients with persistent Lyme disease, like people with COVID-19, may be willing to accept more risk—depending upon how sick they are.

Ultimately the choice of what to do for an individual patient should be decided by the patient and their treating physician.

That’s what the NIH’s COVID-19 Guidelines say. Shouldn’t we offer the same for people with Lyme disease?

Phyllis Mervine is Founder and President of LymeDisease.org.