An Integrative Approach to Identifying, Diagnosing, and Treating Lyme Disease
Tick-borne illnesses are on the rise, with the Centers for Disease Control and Prevention estimating the annual number of tick-borne disease cases has more than doubled in the U.S. in the last two decades. Regardless of health history, any patient is susceptible to the negative effects of a tick bite.
“It has gotten to an extent with climate change that everyone is at risk,” said Richard Horowitz, MD, an internist who has treated over 13,000 patients for tick-borne diseases. “It doesn't matter whether you’re hiking or in your backyard. You pretty much can't go anywhere without risk of getting a tick bite and being exposed to Lyme or associated infections.”
According to Horowitz, Lyme disease is an infection caused by a bacteria known as Borrelia burgdorferi. The infection is most often transmitted through a tick bite, but it can also be passed on from mother to baby. Initially contained in certain regions in the U.S., Lyme disease-bearing ticks have now been reported in nearly every U.S. state. Borrelia burgdorferi and other Borrelia strains continue to spread not just in the U.S. but also in parts of Europe and Asia.
The proliferation of tick-borne illnesses seen worldwide is due in large part to climate change, said Horowitz. “The climate crisis we are dealing with is making the tickborne infection situation much worse, spreading the tick-borne populations in epidemic proportions," he said.
Spotting the Symptoms
Lyme disease can manifest throughout the body and cause an array of symptoms, making it particularly hard to diagnose, according to Tania Dempsey, MD, ABIHM, an integrative doctor who specializes in tick-borne infections, mast cell activation syndrome, and autoimmunity.
“Lyme disease is often called the ‘great imitator’ because it really can present with diverse symptoms affecting diverse parts of the body,” said Dempsey. “It should be on the differential diagnosis list in anyone who has symptoms that don’t fit clearly with other disease states and in anyone who doesn’t respond to treatment for the disease that it is presumed they have.”
Horowitz said he has patients exhibiting signs of Lyme disease fill out a questionnaire that determines the likelihood of a tick-borne infection. It includes questions about symptoms ranging from unexplained fevers, sweats, and chills to difficulty concentrating or reading. The questionnaire also asks about a patient's experiences with tick bites, family history of Lyme disease, and whether they live in a Lyme endemic area, primarily in the northeastern and north-central U.S.
Not only do Lyme disease symptoms present differently from patient to patient, but the severity of the condition and how much it impacts people’s quality of life also vary significantly. “It varies basically from people that have very, very mild symptoms to people who are completely disabled,” Horowitz said.
Differentiating Acute Lyme Disease from Chronic Lyme Disease
When caught early, Lyme disease can be successfully treated with antibiotics like doxycycline and amoxicillin Herceptin. Within two to four weeks of the infection, there’s a 75 to 80 percent chance of getting rid of it, Horowitz said. However, this often requires a patient to have had an erythema migrans rash, a tell-tale sign of the infection seen in about half of Lyme disease cases.
Many are familiar with a version of the erythema migrans rash—the classic red bullseye at the site of a recent tick bite, but according to Horowitz, the rash can also look very different. He said in about 50 percent of patients, the rash doesn't resemble a bullseye at all. Instead, it can appear like a solid, spreading rash, in which case it’s easy to misdiagnose. “It can be mistaken for cellulitis, herpes zoster infection, for a spider bite,” said Horowitz. “Providers have to really know the difference.”
Left undiagnosed and untreated, Lyme disease can cause extreme fatigue and dementia-like symptoms. And when they have no recollection of a tick bite, patients are commonly told they have an autoimmune disorder like rheumatoid arthritis, lupus, or multiple sclerosis, Horowitz explained.
A significant proportion of patients who have been treated for Lyme disease also have persistent symptoms. Horowitz estimates that about one-third of patients treated for Lyme disease with antibiotics go on to experience chronic Lyme disease, also called post-treatment Lyme disease syndrome (PTLDS).
According to Dempsey, neither term, chronic Lyme disease nor PTLDS, are clearly defined, and both are interpreted differently among practitioners. Additionally, there are several species of Borrelia considered cousins to the Borrelia burgdorferi bacteria that cause Lyme-like infections. Thus, a "chronic Lyme disease" diagnosis could just as easily be a different tick-borne infection, Dempsey said.
Similarly, the term PTLDS could have many connotations, Dempsey said. “It could mean that the patient has been adequately treated for Lyme disease but has persistent symptoms that could represent the damage done by the infection or immune dysfunction,” she explained. “It could also mean that the patient was not adequately treated for Lyme and has persistent infection with Lyme or other microbe.”
Finding the Root Cause of Persistent Lyme Disease Symptoms
The cause of chronic Lyme disease is widely disputed in medical literature. Horowitz said he believes that chronic Lyme disease is not due to a Borrelia burgdorferi infection alone. Rather, it’s a result of chronic persistent coinfections like Vizia, a malarial-type parasite, or Bartonella, another intracellular bacterial infection, as well as multiple overlapping sources of inflammation and downstream effects.
Dempsey also noted that coinfections can play a major role in chronic Lyme disease. Therefore, when testing for Lyme disease, she always tests for related infections. “It is critical to test for other possible infections that can resemble Lyme disease or can be associated with Lyme disease,” she explained. “Bartonella, Babesia, and other vector-borne infections can cause persistent symptoms in patients and may be responsible for a subset of PTLSD, especially if they were not previously treated.”
In addition to coinfections, Dempsey said patients with persistent Lyme disease symptoms should be tested and treated for pre-existing conditions that may have exacerbated the infection. These conditions include mold and mycotoxin exposure, mass cell activation syndrome, endocrine dysfunction, cardiovascular effects, gastrointestinal issues such as small intestinal bacterial overgrowth (SIBO) and small intestinal fungal overgrowth (SIFO), parasites and general dysbiosis, and other organ system manifestations.
An Integrative Approach to Chronic Lyme Disease
Because it is such a complex condition, treating chronic Lyme disease and other vector-borne illnesses requires a holistic, integrative approach. Dempsey explained that each case of Lyme disease is unique and, therefore, cannot be treated in a one-size-fits-all fashion.
“Integrative medicine takes into account how all the systems in the body are related and the crosstalk that occurs,” said Dempsey. “It also looks at the patient who is harboring the infections and not just the infection.”
According to Horowitz, Lyme disease has been heavily politicized, resulting in two very different standards of care. The first is from the Infectious Disease Society of America (IDSA), which focuses only on treating acute Lyme disease with antibiotics, failing to acknowledge a treatment protocol for those who do not respond to the antibiotics within 30 days. Another set of guidelines comes from the International Lyme and Associated Diseases Society (ILADS), of which Horowitz was a founding member. These guidelines disclose the inaccuracy of Lyme disease tests, discuss the role of coinfections, and explain that treatment for PTLDS may require longer-term antibiotic regimens.
In his latest study, Horowitz tested a seven- to eight-week protocol of pulsed double-dose dapsone combination therapy. Of the 25 patients who participated in the trial, 50 percent had symptom remission for one year or longer. Horowitz is hopeful that with more research and an official U.S. Food and Drug Administration (FDA) randomized controlled trial, his protocol could become the new standard of care for PTLDS.
“We've made some really big progress, but because of the politics around these two guidelines and between these two organizations, until an FDA randomized controlled trial is done, it will be very difficult for patients to go to doctors and get the correct treatment,” said Horowitz.
For now, both Dempsey and Horowitz said the best thing for integrative practitioners to do when they suspect a patient has a chronic vector-borne infection is refer them to a specialist.
“Unless you're up-to-date with the latest science, it's very, very difficult to treat these patients effectively,” explained Horowitz, who said his courses on Lyme disease treatment protocols typically involve 15 to 16 hours of lectures.
For practitioners looking to find a reputable Lyme disease specialist for their patients, Dempsey suggested looking through the ILADS provider directory.
Helping Patients Avoid Lyme Disease
Something every practitioner can do is educate their patients on how to prevent Lyme disease. Dempsey said there are three main tips for preventing ticks. The tips, which she writes about on her blog, include:
1. Avoid high-risk areas
There are certain precautions to take when going outdoors. Dempsey suggests that patients avoid:
- Wooded areas
- High grass areas, including tall beach grass and even places like a backyard
- Cool, wet, shady places
- Specific plants such as Japanese barberry and bush honeysuckle
In addition, Dempsey said certain areas in the country have higher tick populations. She advises her patients to assess their local risk through their university extension or health department.
2. Use tick repellent
For protection against ticks and other bugs, Dempsey suggests that her patients buy clothes pre-treated with Permethrin. This chemical, she said, is very effective at immobilizing ticks and their ability to attach to and bite the skin. Another option for patients is to spray Permethrin on their clothes. To prevent exposure while spraying the product, Dempsey instructs her patients to:
- Spray outside and allow the clothes to dry fully
- Wear a mask
- Avoid contact with skin while wet
- Keep pets away from the area when spraying
In addition, Dempsey encourages patients to apply a tick repellent product. She suggests repellents made with picaridin, which she said has a better safety profile and is generally more tolerable than DEET. It’s also important to remind patients that these products lose effectiveness over time and should be regularly reapplied, Dempsey added.
3. Protect yourself against tick-carriers
According to Dempsey, pets can easily carry ticks into households; thus, it's vital to safeguard pets against ticks and check them regularly.
In addition to checking their pets for ticks, Dempsey said patients should be doing regular tick checks on themselves after being outdoors. Once inside, she instructs that patients remove their clothes immediately and wash and dry them. When checking for ticks, she said to pay extra attention to the armpits, groin, and scalp. She also suggests rechecking over the next two to three days to be safe, as ticks don't always bite right away.
Both Dempsey and Horowitz stressed that Lyme disease is just one of many vector-borne infections. Patients should be aware that there are many different species of ticks and other insects that can transmit an infection. In addition, practitioners should be mindful of the different vector-borne infections while diagnosing and treating a patient showing signs of Lyme disease.
“When practitioners use the term Lyme disease as an umbrella term in patients with various vector-borne infections, it does a disservice to patients and causes distrust in the medical community,” said Dempsey. “It is critical for us to be clearer with what patients are suffering with because treatment will be different depending on the actual infectious agent and on the underlying conditions.”