Lyme disease has been among the most perplexing of illnesses since it was given a name in the mid-1970s — it’s difficult to diagnose early on using blood tests, and the myriad symptoms experienced by chronic sufferers of Lyme have proven difficult to pinpoint and treat, particularly if an initial Lyme infection was never confirmed.

Dr. George Dempsey, a primary care physician with East Hampton Family Medicine, had originally planned to be a medical researcher before he began his career. With his practice situated near the epicenter of Lyme infections in the United States, he’s seen the many manifestations of this disease first-hand.

When he initially began practicing medicine, he said, there was a great deal of controversy regarding long-term intravenous antibiotics that some doctors were prescribing for people who had symptoms of chronic Lyme disease.

“I sat there and said ‘this is a mess,’” he said. “It was the wild west.”

He decided to do his part to contribute to rigorous Lyme research.

Since 2014, Dr. Dempsey has been working with his patients to provide data and blood samples to the Bay Area Lyme Foundation’s Lyme Disease Biobank, where the samples are used to do research around the country.

He is currently part of a team led by Dr. Mary Ann Comunale at Drexel University working on a new Lyme disease diagnostic test, with help from the Biobank. Their work was a Phase 1 winner, along with nine other research projects, of the U.S. Department of Health and Human Services’ LymeX Innovation Accelerator’s LymeX Diagnostics Prize this February. 

The team has won $100,000 to continue working on its test through Phase 2. A final winner is expected to be announced by the end of this year.

This month, Dr. Dempsey’s office issued a call for anyone who is experiencing early-stage symptoms of Lyme disease, whether a patient in his practice or not, to donate a small sample of blood to the Biobank and answer questions about their symptoms, after which they will receive a $50 gift card. Appointments can be made by calling 631.324.9200.

“I originally became a GP to come up with research ideas,” said Dr. Dempsey in an early February interview at his East Hampton office. “I’ve been asking patients since 2002 if they wanted to contribute to research. The Bay Area Lyme Foundation approached me because they knew I’d been collecting samples for years.”

While the Bay Area Lyme Foundation, near San Francisco, is not in a region where Lyme infection is as prevalent as the East End, it was founded by tech entrepreneurs who had first-hand experience with Lyme, along with the tech community’s conviction that they are capable of saving the world, said Dr. Dempsey.

Dr. Dempsey’s office has been one of the primary donation sites for the Biobank, along with Massachusetts General Hospital and the Marshfield Clinic in Wisconsin, which together have provided more than 1,000 samples that have been used in 65 Lyme research projects. Along with the blood sample, they also collect a great deal of data from the patients about their symptoms and exposure.

Existing blood tests for Lyme disease, a bacterial infection transmitted through the bite of the black-legged “deer tick,” are likely to return false negatives early on in the infection, before patients had built up enough antibodies to be detected. 

That’s why many doctors in areas with high Lyme infection rates will prescribe a short-term course of antibiotics to patients based on their clinical assessment — whether they’d been bitten by a tick, had a rash or a fever in the summer — rather than based on the results of a blood test. 

While the rash that looks like a bulls-eye is a classic Lyme symptom, Dr. Dempsey said there are other types of known Lyme rashes that may be caused by different strains of Lyme.

Biobank samples have already been used for a study published in the Journal of Clinical Microbiology that showed the current standard diagnostic blood test could not confirm the disease was present in 71 percent of blood samples from people who presented with a Lyme rash in areas where the disease is endemic.

“If researchers don’t have access to reliable blood samples that are connected to symptoms and other health information, they can’t build the necessary research projects to develop better diagnostics for this complex disease,” said Dr. Liz Horn, the Principal Investigator at the Lyme Disease Biobank, in an announcement urging East Enders with Lyme to contribute blood samples.

Early stage blood samples provided by patients may prove critical to enabling early detection in new blood tests. 

The Drexel University research project focuses on determining the presence of glycans, carbohydrate modifications found on proteins in people who are experiencing an immune response.

“A large percentage of my patients agree to donate to the blood bank, unless they’re so sick that they just want to feel better,” said Dr. Dempsey. 

While to a lay person the idea of chronic Lyme disease may seem controversial, Dr. Dempsey said it acts in much the same way as other immunological disorders, in which the body’s immune system continues to over-react to perceived threats even after those threats have dissipated. In these cases, the tick-borne infection can trigger certain peoples’ genes to react to their surroundings differently than they had prior to exposure.

Our understanding of these types of chronic conditions vary from long-studied ailments like Type 1 diabetes to new conditions like long Covid.

“Where Lyme sits in this is not clear, but in the long term, it doesn’t matter,” said Dr. Dempsey. “I think in the long term we’re going to find a series of cures for different chronic conditions caused by Lyme, from knee inflammation to brain fog…. The mechanism is going to be immunologic.”

Dr. Dempsey is asking East Enders who have symptoms including flu-like ailments, such as fever or chills, muscle and/or joint pain, headaches, fatigue and sometimes a skin rash, commonly—but not always—a circular or expanding bullseye rash that spreads from around the original bite area, to call 631.324.9200 if they’d like to send a blood sample to the Biobank.

Beth Young
Beth Young is an award-winning local journalist who has been covering the East End since the 1990s. She began her career at the Sag Harbor Express and, after receiving her Masters from the Columbia University Graduate School of Journalism, has reported for the Southampton Press, the East Hampton Press and the Times/Review Media Group. She founded the East End Beacon website in 2013, and a print edition in 2017. Beth was born and raised on the North Fork. In her spare time, she tinkers with bicycles, tries not to drown in the Peconic Bay and hopes to grow the perfect tomato. You can send her a message at editor@eastendbeacon.com

One thought on “Finding A Better Way to Diagnose Lyme Disease

  1. I had Lyme for decades without knowing it (South Dakota 1960s), got sick at age 43 (1998), misdiagnosed until 2010. It took 4 yrs to get rid of bacteria. I am still only 70% recovered. Cognitive problems are the hardest to deal with. Working memory, insomnia, confusion, word substitution, concentration, etc. Got Covid in July 2021, still have it in lungs. Some Lyme symptoms returning. Severe chronic neck pain. Thanks for article. I am getting re-tested for Lyme. Still disabled at 67. My LLMD said the bacteria went up my spinal chord into my brain.

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