![]() For Georgina Pinckney, the fatigue has gotten much better. Some chronic Lyme sufferers say their various treatments have helped ease a few of their health problems, while other symptoms persist. “It’s like playing whack-a-mole trying to get better,” he said. He has tried multiple courses of antibiotics, and more than a dozen alternative treatments, including herbs, supplements, and injections of various sorts. Costanzo, once an avid, high-energy skier and runner, now has days when he can barely walk down the stairs to his home office. “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. 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. 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. 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. 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. The team has also discovered that mice and people make antibodies to fight the phospholipid-cloaked germs. 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 configurations look different in those who will be fine after treatment, versus those who just get sicker and sicker, said Tal. 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 theories are strikingly similar to those scientists suggest for the potential culprits fueling long COVID. Others think it may be that the infection is still lurking but difficult to detect. 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. There are several theories about what causes such long-lasting disease. Some research indicates that a delay in diagnosis and treatment may raise the risk for chronic Lyme. 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. The institute said building that understanding might help develop effective therapies.Įxactly why some people recover from Lyme after antibiotic treatment and others do not is unclear. 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. “In terms of clinical presentation, look like the same disease even though one is caused by a virus and one by bacteria,” Tal said. Michal Caspi Tal of MIT has noticed an "antibody signature" in chronic Lyme patients that she is working to develop into a diagnostic test. Tal is leading one of the two Massachusetts teams awarded federal grants, and the Pinckneys have enrolled in her study. “Long COVID and chronic Lyme share so many features that it’s uncanny,” said Michal Caspi Tal,principal scientist in biological engineering at MIT. The experiences shared by the Pinckneys and many other chronic Lyme patients sound remarkably similar to those of people battling long COVID. 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.”Įach 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. Georgina Pinckney and her daughter Madison both struggle with chronic Lyme disease.
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