Treating Lyme disease: A chronic problem
While it’s common knowledge that antibiotics are a successful treatment for acute Lyme disease, treating chronic Lyme disease, known as Post-Treatment Lyme Disease Syndrome (PTLDS), is another story.
There is debate within the medical community about treatment for PTLDS, and some medical professionals do not acknowledge the condition even exists.
Dr. Steven Phillips of Wilton, a Lyme disease specialist, is in the crosshairs of the debate. In his practice, he sees only patients with complex, late-stage, and chronic manifestations for Lyme and PTLDS.
Because so many Lyme sufferers seek out Phillips for assistance, he’s had as much as a two-year patient waiting list and has added two nurse practitioners to his staff to meet client demand.
One of the problems getting a handle on Lyme disease is that it affects people quite differently. Many Lyme patients develop flu-like symptoms, typically marked by a rash, and can be cured with a two- to four-week course of oral antibiotics.
Other Lyme victims are not so lucky. Even after conventional treatment, they continue to have pain and fatigue. They may develop chronic neurologic issues such as headaches and brain fog, as well as cardiac problems, multiple joint diseases, and facial palsy.
Because Lyme disease symptoms are varied and diverse, it is known as “the great imitator,” with symptoms mimicking fibromyalgia, chronic fatigue syndrome, multiple sclerosis and other diseases.
What is Lyme?
Lyme disease got its name from Old Lyme, Conn., where it was first diagnosed in 1975.
It is the most commonly reported vector-borne disease in the U.S and affects an estimated 329,000 people each year, according to the Centers for Disease Control and Prevention (CDC).
The disease is caused by bacteria called Borrelia burgdorferi. In Connecticut, these bacteria are spread to humans through the bite of infected Ixodes scapularis — black-legged or deer ticks.
Last year, 3,000 cases of Lyme disease were reported to the Connecticut Department of Public Health (DPH), with 14 cases reported in Wilton.
However, the Centers for Disease Control and Prevention (CDC) estimate there are approximately 10 times more people diagnosed with Lyme disease than the yearly reported number. Using the CDC estimate, approximately 30,000 people are diagnosed with Lyme disease each year in Connecticut.
“Conservatively, at least 20% of these cases develop into chronic Lyme, and this number is continuing to accumulate over time,” Dr. Phillips said.
Some members of the medical profession balk at the existence of PTLDS, believing antibiotic treatment at the outset is all that can or should be done to treat Lyme disease.
One reason for that mindset is that in most PTLDS cases there is no laboratory proof that bacteria are still present after standard treatment has been administered.
“Conventional medicine has a hard time treating something it cannot see or isolate,” said Dr. Marcelo Campos in a June 2018 Harvard Medical School report.
“But we cannot ignore that people’s lives changed after the diagnosis of Lyme disease. Their suffering is real. And the frustration is widespread.
“On one side, we have distressed patients tired with the lack of answers; on the other side, we have doctors who cannot find a biological proof of what is happening.
“Finally, we have an economic system where insurance companies regulate payment concerning how we diagnose and treat diseases... Lyme disease is the poster child for the disconnect we have in our current healthcare system,” he said.
Phillips said chronic Lyme patients are frequently diagnosed by default with inflammatory conditions, the so-called “autoimmune conditions” when doctors can’t find a cause to their continuing ailments.
“This amounts essentially to a black hole in medicine, and patients end up getting diagnosed with MS, rheumatoid arthritis, psoriasis, chronic fatigue syndrome, and fibromyalgia, and once those labels are applied, the search for answers comes to an abrupt halt and the focus shifts to treating symptoms rather than finding and treating the root cause, which I think is a grave mistake,” he said.
With such a large volume of what he perceives as PTLDS misdiagnoses, Phillips believes this period in medicine will be looked back upon with shame. “It’s a time when many in the medical community have turned a blind eye to a large and suffering patient population that needs care,” he said.
To combat PTLDS, Phillips treats his patients with a variety of antibiotics as well as a variety of non-antibiotic antimicrobials, agents that kill microorganisms or stop their growth. “In my experience, they work well,” he said, noting successful antimicrobial results published by Johns Hopkins University.
He encourages patients to ask questions of their doctors and if the answers don't make sense, then ask further questions for clarification. “We all deserve to be healthy,” he said.