Georgina and Madison Pinckney share an unusual mother-daughter bond.
The two have spent years battling bouts of crushing fatigue, brain fog, and, for Madison, a cascade of other debilitating symptoms. Each says a tick bite — about seven years ago for Georgina, the mom, and 15 for Madison — thrust them into the Kafkaesque world of chronic Lyme disease.
The condition has ensnared tens of thousands of Americans but still has no definitive diagnostic test, let alone agreed-upon effective treatments. It’s why the Pinckneys recently enrolled in new studies by Massachusetts scientists who have been awarded millions of dollars by the National Institutes of Health to help unlock some of long Lyme’s mysteries.
“Right now, you’re pretty much on your own if you fall into this category, this netherworld of lingering symptoms,” said Georgina Pinckney, 56, who lives in upstate New York. Like many others with chronic Lyme, the Pinckneys describe years of trekking from one Lyme specialist to the next, racking up huge bills with mixed results.
Madison, who is 25, is in her last year of law school at Duke University and pushes through near-daily headaches and fatigue because she is determined to become a disability rights lawyer “to try to make it even a fraction easier for chronic illness patients to function in life and in health and education.”
Each year, more than 470,000 people in the United States are infected with Lyme disease, and the NIH estimates that between 10 percent and 20 percent will go on to battle lingering symptoms, now officially referred to as Post-treatment Lyme Disease Syndrome.
The experiences shared by the Pinckneys and many other chronic Lyme patients sound remarkably similar to those of people battling long COVID.
“Long COVID and chronic Lyme share so many features that it’s uncanny,” said Michal Caspi Tal,principal scientist in biological engineering at MIT. Tal is leading one of the two Massachusetts teams awarded federal grants, and the Pinckneys have enrolled in her study.
“In terms of clinical presentation, [long COVID and chronic Lyme] look like the same disease even though one is caused by a virus and one by bacteria,” Tal said.
In announcing the new grants, the NIH said it hopes that broadening scientific understanding of what causes chronic Lyme might help researchers decipher similar mysteries with other infection-associated chronic illnesses, like long COVID and myalgic encephalomyelitis, formerly known as chronic fatigue syndrome.
The institute said building that understanding might help develop effective therapies.
Exactly why some people recover from Lyme after antibiotic treatment and others do not is unclear. Both Georgina and Madison Pinckney received antibiotics but for each there was a significant delay in their diagnosis — a couple of years for Georgina and several more for Madison. Some research indicates that a delay in diagnosis and treatment may raise the risk for chronic Lyme.
There are several theories about what causes such long-lasting disease. Some scientists hypothesize that it may be linked to a misguided immune response to the bacterium that causes Lyme, in which the immune system attacks the patient’s own cells. Others think it may be that the infection is still lurking but difficult to detect. The theories are strikingly similar to those scientists suggest for the potential culprits fueling long COVID.
Tal’s research is already discerning differences in the ratios among various types of antibodies in Lyme patients before they even start taking their initial course of antibiotics. The configurations look different in those who will be fine after treatment, versus those who just get sicker and sicker, said Tal.
“This could be a diagnostic for chronic Lyme,” she said, referring to the distinct “antibody signature” she sees early in the infection of people who will go on to develop chronic Lyme.
“There is an incredible similarity to the signature people have a decade later who did not recover,” she said.
Tal’s study, called MAESTRO, is enrolling several different groups of participants, including those newly infected with Lyme and those who have suffered for years, as well as people who haven’t had Lyme, to be used as a healthy comparison group. The study is also enrolling long COVID patients to analyze their antibody ratios as well. The researchers are studying blood, urine, saliva, and other samples from participants, who will also undergo a battery of neurological and other tests.
Tal’s team is receiving $2 million over five years and aims to have some findings published by the summer of 2025.
“This is a solvable problem,” Tal said. ”This is not rocket science. This just needs to be looked at with fresh eyes.”
The other new Massachusetts study to receive federal funding is led by Dr. Linden Hu, a microbiology professor and director of the Lyme Disease Initiative at Tufts Medical School. His team is receiving about $3 million over five years.
Hu’s team has found that the germ that causes Lyme gobbles up a fatty substance, known as phospholipids, from the person or animal it invades and wraps itself in these phospholipids. The team has also discovered that mice and people make antibodies to fight the phospholipid-cloaked germs. Hu theorizes that a response may go haywire in some of the people suffering from chronic Lyme, creating an autoimmune condition in which the body is fighting itself.
Hu’s goal in this latest research is to verify his theory: that the chaotic immune response is, in fact, directly linked to this battle against the phospholipids.
If the theory proves correct, then at least those whose chronic Lyme appears to be fueled by an out-of-control immune response might reasonably be treated with specific medications to suppress it, Hu said.
Without definitive tests to pinpoint chronic Lyme, and such a wide and often amorphous array of symptoms, desperate patients often find themselves in a bewildering and expensive maze of specialists.
“I have spent six figures trying to get better,” said Peter Costanzo, a 50-year-old business specialist in Connecticut who was bitten by a tick 14 years ago and hasn’t been the same since. Costanzo, once an avid, high-energy skier and runner, now has days when he can barely walk down the stairs to his home office. He has tried multiple courses of antibiotics, and more than a dozen alternative treatments, including herbs, supplements, and injections of various sorts.
“It’s like playing whack-a-mole trying to get better,” he said.
Some chronic Lyme sufferers say their various treatments have helped ease a few of their health problems, while other symptoms persist. For Georgina Pinckney, the fatigue has gotten much better.
“The main symptom I am left with is cognitive deficits, finding words and concentration,” she said. Her daughter, Madison, no longer battles the anxiety and depression that plagued her early on in her Lyme odyssey, but fatigue and headaches are still nearly constant companions. She also has blood sugar abnormalities that require her to wear a continuous glucose monitor on her arm, though doctors aren’t sure if that’s related to her Lyme.
“I have hope that I will continue to get better,” Madison said, “but not hope that I will get better tomorrow.”
But both women say the newly funded studies are encouraging.
“To see such an esteemed institution, like MIT, involved and that the [NIH] is willing to fund studies of chronic Lyme that I think they were hesitant to acknowledge even existed five years ago,” Georgina Pinckney said, “it felt like a win.”