The Latest on Lyme

Purist founder Cristina Cuomo sat down with Lyme disease expert Dr. Nevena Zubcevik of Harvard and Spaulding Rehabilitation Hospital Dean Center for Tick Borne Illness to discuss the rise of Lyme disease.
Photo by Morgan Maassen

CRISTINA CUOMO: What do we need to know about Lyme disease now?
DR. NEVENA ZUBCEVIK: It can be acquired anywhere—even in city gardens, in backyards of people living in urban environments. It’s not that you have to go to the woods to get this disease, as it used to be in the past. The number of people who have been exposed to it has increased exponentially in the past 10 years. This illness is very difficult to diagnose, and it’s also difficult to even know that you’ve acquired it, because the ticks who carry Lyme are so small. They have a numbing medicine in their mouths, so when they bite, you never really experience that pain or itchiness that you would from a mosquito.

CC: Is this an epidemic?
NZ: Not quite an epidemic, but cases are increasing at a rapid rate. The CDC (Centers for Disease Control and Prevention) estimates that about 300,000 Americans get Lyme disease each year, but only about 35,000 diagnoses are reported. We don’t have the tools to really stop it.

CC: How long does the tick need to be attached before it releases its poison?
NZ: We don’t really know. The truth is that we thought it had to be attached for a very long time, but there have been case reports published saying it’s less than 16 hours. We have to remember that ticks can also transmit many other illnesses. Fifteen minutes is enough for the tick to transmit Powassan virus, so any amount of attachment is concerning, and should be discussed with a doctor.

CC: When is the season for ticks?
NZ: It’s all year round. We thought that in the winter, ticks would stay dormant, but the snow actually protects the ticks from the cold. Instead of freezing in the soil, they are buffered by the snow. They survive cold winters, and can emerge in massive numbers in early spring.

CC: Why is Lyme disease so difficult to diagnose?
NZ: The current testing we have is quite ancient. It was developed in the late ’70s, early ’80s, and what it relies on is just antibody response. It’s basically asking the patient’s immune system, “Have you seen this pathogen?” Lyme disease is an illness that damages the immune system, so a lot of the time asking the immune system isn’t very accurate, because the immune system might not be able to respond. The holy grail of diagnostic medicine and what we should be striving for is something called the direct detection test, meaning you’re looking for traces of the bug somewhere, like in urine or blood. Testing is unreliable otherwise. Even the CDC is working hard to find alternative testing methods.

CC: How important is it to test for co-infections?
NZ: Very, very important. When you go to a doctor’s office, the gut feeling is to test for Lyme, but really what we need to be educating our physicians on is that they have to test for co-infections. For example, there’s anaplasmosis, ehrlichiosis, Rocky Mountain spotted fever, Powassan, heartland, the bourbon virus. It’s important that we’re also on alert for various infections.

CC: What about the environmental issues surrounding Lyme, like heavy metals, mold and other viruses?
NZ: The more burden that the organism has from any of these other infections, the sicker people will be. Getting people to live in a healthy environment where there is no mold in the air, and no heavy metals is important. These days, a lot of people are living these lifestyles where they want to be healthy, so they’re eating less meat, more fish…[so they’re ingesting] a lot of metals, mercury, PCBs (polychlorinated biphenyls) and other things. It’s really important for us to be mindful of our food intake.

CC: You are the Co-Director of the Dean Center for Treatment, Rehabilitation and Recovery of Tick Borne Illness at Spaulding Rehabilitation Hospital. What does the Dean Center offer Lyme patients that other centers don’t?
NZ: We’re the only center in the United States that is an academic center offering patients a comprehensive approach to their health. We look at the whole person—mental health, physical health, and the needs of rehabbing the brain and the body. The first visit is two hours, because we listen to the patient and try to understand what all the components are that contribute to their sickness. Then we try to tackle all of those independently, and build a team, which most patients don’t have.

CC: What are the best preventative measures?
NZ: The number one thing I always tell patients is, wherever you’re going to spend most of your time, like your yard, should be sprayed. A lot of patients opt to use organic oils like peppermint, lavender or rosemary. Unfortunately those haven’t been studied very much, so it’s hard for me to recommend those because I don’t know the success rate. I have had patients acquire bites in their yards when they’ve used organic oils. The pesticide that’s been studied the most is permethrin, which is sprayed on the grass and on clothes. But there are companies that actually make clothing pretreated with permethrin, and those last longer because the chemical has been embedded inside the fibers. Sleeping with your pet is another big no-no. They could have a tick that’s hanging on a hair, and then as you sleep, the tick can crawl over and bite you.

CC: What are some of the myths? I know my son climbs trees and I always tell him, “That’s OK, it’s safe up there. You’re above ground. Ticks don’t climb up,” right?
NZ: Not unless they’re in birds, which they are. They travel on migratory birds, but generally, they tend to live in lower bushes and grass.

CC: What do you do if you find a tick?
NZ: If you find a tick—if you’re lucky enough to find it— try to save it, put it in a plastic bag and freeze it. But if you unfreeze it and you leave it on your counter, and there’s a hole, it could wake up and defrost itself and walk away. Ticks are incredibly resilient. Treat the wound with an alcohol swab and antibiotic ointment, and report it to your physician. The current national guidelines that are published by the National Guideline Clearinghouse recommends prophylactic treatment with antibiotics for a tick bite.

CC: What are you specifically doing in your practice to change the treatment landscape that exists today?
NZ: We have started doing something called the translational data collection. Anytime a patient comes in, we collect laboratory data and symptom data. We then analyze the data to try to look at patterns. Data is an incredibly powerful tool that we have in medicine. Validating the patient experience and showing biomarkers will hopefully lead us in the right direction for treatment options.

CC: What is the HSS (Health and Human Services) Tick-Borne Disease Working Group?
NZ: The HHS is an effort to start consolidating information from a variety of stakeholders, and understand what the impact of this disease has been from patients, representatives in the government, military, science, to understand it all and try to create a plan of how to improve the field at large.

CC: Does that include vaccination?
NZ: The tick saliva vaccine would really revolutionize how we’re protected from any tick bite, because you would actually be immunized against the saliva of the tick before it’s injected any pathogen into the body. A Lyme vaccine alone won’t protect you from the co-infections. There’s a European pharmaceutical company currently working on a tick saliva vaccine. It would be very exciting if that becomes a reality in the next few years.

Dr. Zubcevik is faculty at Harvard Medical School Department of Physical Medicine and a rehabilitation physician at Spaulding Rehabilitation Hospital Dean Center for Tick Borne Illness.