Like long COVID, Lyme disease can become chronic — and patients are just as dismissed and desperate

Between 2012 and 2014, Tracy Jakich Davis’ 14-year-old son, Jaden, developed a host of mysterious symptoms that more than a half dozen doctors near Phoenix, Arizona could not piece together to form a diagnosis: a rash that looked like ringworm all over his head; swelling and pain in the knees that kept him from playing basketball; pain in the fingers so strong he couldn’t grip a golf club; a suppressed immune system that caused him to pick up viruses every four to six weeks; and, finally, severe migraines with blurred vision.

When Jaden was finally diagnosed with acquired Chiari, or a brain herniation caused by a spinal fluid leak, in November 2014, doctors rushed him into brain surgery. However, that only made things worse, according to his mother, and they were back in the hospital on multiple occasions for intolerable pain that ultimately spread to his teeth. At the emergency room in unbearable agony, an attending physician sent him to have his two front teeth pulled, Davis said. Yet that didn’t work to alleviate his pain, either.

In the end, it was Davis who found the diagnosis for her son two excruciating years later while searching online through various Facebook groups for children with chronic pain. A woman had posted about a bullseye-shaped rash with a list of symptoms that remarkably resembled Jaden’s. That’s when Davis remembered the strange rings on Jaden’s head after the camping trip.

“You think, ‘Okay, now we have the answer and we can get it treated,” Davis told Salon in a phone interview. “I went to his neurologist and said ‘I think I know what this is,’ and they wouldn’t take it seriously.”

Yet finding her son’s diagnosis was just the beginning of a long journey to getting him help. After meeting a doctor who confirmed her son had chronic Lyme disease, formally known as Post-treatment Lyme Disease Syndrome (PTLDS), Davis ended up spending more than $300,000 treating her son’s condition and ensuing musculoskeletal pain before she lost count of how much she’d spent.

Many doctors didn’t accept her insurance and the costs of treatment were too high to continue long-term. One doctor they finally felt was equipped to treat him died a week after their first meeting. At one point, they were flying to Maryland to see a doctor who offered treatment at an affordable price, but the commute became impossible when her son’s pain left him bedbound.

Today, Jaden has nearly completed an associate’s degree in applied science and wants to one day become a physical therapist, inspired in part by his own experience with years of physical therapy. He has tried dozens of therapies to treat his chronic pain but still hasn’t found any long-term solutions to manage his underlying PTLDS.

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For a subgroup of patients, including Jaden, debilitating symptoms persist for years after their initial Lyme disease diagnosis. Yet despite a concerning increase in tick bites and Lyme disease as tick habitats expand due to climate change, the science on how best to treat chronic Lyme disease is “limited, emerging and unsettled,” according to the Centers for Disease Control and Prevention (CDC).

The incidence of Lyme disease, caused by the Borrelia burgdorferi bacteria transmitted in black-legged ticks, nearly doubled between 1991 and 2018, with roughly half a million people diagnosed with the condition in 2022. For up to 10% of patients with Lyme disease, the condition will turn chronic, meaning patients remain sick for more than three or four weeks after their initial infection and begin to experience malaise, secondary cognitive or neurologic disorders and generalized musculoskeletal pain.

Many patients are diagnosed with additional infections like bartonellosis or babesiosis caused by other bacteria carried by ticks, which can complicate treatment. Jaden, for example, had both of these additional infections but had to stop taking certain antibiotics that helped with his chronic pain because they caused such severe gastrointestinal issues.

“It's like we're in this black hole,” Davis said. “I know he has an infection and antibiotics are helping, but we can't get someone to really manage the pain properly through the infection route.”

Many people with PTLDS say their doctors initially didn’t recognize their symptoms as something stemming from Lyme disease, which delays diagnosis and treatment. For one thing, diagnostic tests are relatively inaccurate, with many patients getting false negatives. But, similar to patients with long COVID, postural tachycardia syndrome (POTS) and chronic fatigue syndrome, many patients say doctors can also be dismissive of their symptoms, leaving some gaslit families to pursue their own diagnoses and even unproven treatments online and in Facebook groups in what Davis called an “underground” network of PTLDS medical care. With research indicating that delayed diagnoses and treatment increase the chance that Lyme disease will turn chronic, the stakes are high to get the diagnosis down quickly.

Dr. Daniel Cameron, an internist and twice past president of the International Lyme and Associated Diseases Society (ILADS), said he has seen many patients who have been sick for five or six years but have been passed around by so many different doctors that they become “lost in the system.”

“There are quite a few [PTLDS doctors], but I just don't think there's enough to meet demand,” Cameron told Salon in a phone interview. “Patients have trouble accessing doctors who are used to treating chronic neurologic Lyme, neuropsychiatric Lyme or POTS.”

It’s unclear why some patients with Lyme experience ongoing or relapsing symptoms despite completing the recommended course of antibiotics. It could be that small amounts of bacteria persist or that remnants of the initial infection linger in the body and cause ongoing inflammation, said Dr. Brian Fallon, a psychiatrist and director of the Lyme and Tick-Borne Diseases Research Center at Columbia University Irving Medical Center. The immune system might also have started to attack itself, or it could be that issues with the nervous system are causing the host of different symptoms, he added.

“I think [the causes are] different for different people,” Fallon told Salon in a phone interview. “You can have combinations of them, or you can have, for example, a nervous system that’s gone awry and a portion of the spirochaete [bacterial infection] somewhere that’s triggering the immune system to remain activated.”

Lyme disease can also trigger neuropsychiatric conditions that further complicate treatment. Up to 40% of patients with PTLDS also have depression and 90% experience cognitive issues like brain fog. In uncommon cases, infections can cross the blood-brain barrier and cause psychosis, Fallon said.

Jaden, along with some other pediatric patients, developed Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) after an infection that caused brain inflammation. Once an honors student performing high school math in seventh grade, Jaden lost his ability to read and developed tremors along with a host of other symptoms of intellectual disability.

“When my son had it, he literally broke every door in my house and slammed his head through the wall,” Davis said. “As hard as life is now, it is nothing like it was.”

To be fair, these symptoms can be challenging for doctors to diagnose and treat, especially with a paucity of research available to help inform their decisions. Still, some doctors believe PTLDS symptoms are instead caused by conditions like fibromyalgia or chronic fatigue syndrome that happen to be coming up after the tick bite — despite a growing body of evidence suggesting these symptoms stem from the original infection.

Distinguishing these conditions from one another is essential to guide doctors in choosing appropriate treatment options. However, Fallon emphasized the importance of getting treated for whatever symptoms patients have after antibiotic therapy.

“If you are suffering from depression are suffering with suicidal thoughts, you should definitely reach out to a mental health professional for help,” Fallon said. “That doesn't mean it's not triggered by the Lyme disease. It does mean that these are serious problems. … It's a sign that you're using all possible approaches to try to get yourself better.”

As it stands, treatments for PTLDS are all over the map, with different doctors recommending everything from antibiotics to IV immunoglobin, which is used to treat immune conditions. Because there is no consensus on how best to treat this condition, physicians pursue conflicting paths, and getting treatment covered by insurance is challenging.

Further complicating things, according to a 2016 paper in the Journal of Infusion Nursing, the Infectious Diseases Society of America initially “attached negative connotations to the term chronic Lyme and discouraged its use,” which effectively belittled the condition and led to many patients feeling marginalized medically. It wasn’t until 2015 that the CDC officially acknowledged the condition as PTLDS after it became clear that the terminology was affecting patient care.

Today, the CDC discourages the use of the term "chronic Lyme disease" because it implies that prolonged symptoms are caused by an ongoing Lyme disease infection when the cause of the symptoms isn’t actually known yet, said Dr. Grace Marx, a medical epidemiologist with the Bacterial Disease Branch at CDC’s Division of Vector-Borne Diseases.

"Regardless of the term used, prolonged symptoms can have devastating effects on a person’s life," Marx told Salon in an email. "There is a critical need to better understand the causes of prolonged symptoms in people who have had Lyme disease and the best approaches to treatment and care."

Although it varies by case, Dr. Richard Horowitz, an internist in private practice who treats patients with chronic Lyme in New York, said he treats patients with dapsone, an antibiotic used to treat leprosy, along with other antibiotics like ??doxycycline and azithromycin. Some evidence shows multidrug combinations work better than one antibiotic at a time. On the other hand, Marx pointed to other studies that show extended treatment with antibiotics is ineffective in treating prolonged symptoms in patients who have been treated for Lyme disease — showing how conflicting some of the research in this area can be.

“That’s why a randomized controlled double-blind placebo-controlled study [comparing Lyme disease treatments] needs to be done because we need to standardize this,” Horowitz told Salon in a video call. “Otherwise, it's like the Wild West out there, even though I've been publishing as much as I can on the efficacy and safety of these protocols.”

In a survey published last year of doctors who treated patients with persistent Lyme disease, one reported moving to another state because they said they, along with other physicians who treated complex cases like chronic Lyme, were “specifically targeted by health insurance companies for medical board complaints and other attacks, especially when they helped patients other doctors gave up on.” Davis says she has to pay a naturopath out of pocket because many doctors who treat Lyme have stopped doing so through insurance out of fear of retaliation.

“I believe that the main issue that causes many of these patients to be without access to care is the amount they need to spend on their practitioners plus the out-of-pocket costs for out-of-network testing, labs and treatment,” one physician wrote in the survey. “For most of these patients that is anywhere from $10 to $20K per year. It is a huge burden.”

In 2019, the American Medical Association acknowledged the issue by adopting a policy that stated, “The threat posed by vector-borne diseases is increasing, and we have a limited capacity to respond.”

Marx said the agency is currently working to develop tools to better evaluate and treat patients with Lyme disease in collaboration with the CDC, starting by hosting focus groups with doctors from various specialties who treat chronic Lyme to produce resources for clinicians that should be available in 2024. The National Institutes of Health also recently awarded grants to Massachussets-based researchers to develop better diagnostic tests for chronic Lyme.

Fallon said PTLDS has been increasingly recognized by the medical community since the COVID-19 pandemic began because the long COVID community has shed light on how common and debilitating chronic symptoms following serious infections can be.

“What patients have accomplished through their extraordinary efforts to raise funds and also to lobby Congress to allocate funds for tick-borne disease research has really made a huge difference for the public health of the nation,” Fallon said. “They deserve a lot of credit, and especially the mothers, who have been huge forces for good. When they see their children ill, it motivates them to be fierce advocates on behalf of their children.”

Davis emphasized the importance of developing accurate diagnostic tests and said she’d also like to see a recognition by the medical community that chronic Lyme is real and debilitating to people like her son. These days, Jaden lives with her and sees a variety of doctors and naturopaths to try and relieve his pain. He recently tried ketamine therapy, which worked temporarily but was so debilitating that it’s likely not going to be a long-term solution.

“We need to change the attitude of doctors to recognize that people are not making this up,” she said. “I mean, they're in pain and they can't function.”

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