In March, I had the privilege of interviewing Dr. Elena Frid, a dynamic pediatric and adult autoimmune and Lyme disease specialist in New York City. You may recognize Dr. Frid from her bold, high fashion social media posts; she’s on an attention-grabbing mission to bring encouragement to the Lyme community and educate healthcare practitioners about this illness.
Frid began her neurology practice on the Upper East Side of Manhattan. Within a couple of months, she began to see medically complex patients with no clear-cut diagnoses despite seeing multiple specialists at the country’s top healthcare institutions. “Well, what’s going on with [these patients]?” she asked herself.
Frid’s entry into treating Lyme disease is mainly due to the prompting of her patients. They began bringing her articles about the manifestations of Lyme disease and various autoimmune disorders, and she took notice. Then, one patient encouraged her to attend an ILADS (International Lyme And Associated Diseases Society) conference for further education and training–which she did four years ago–and began treating Lyme patients shortly after that.
A protégé of the renowned Lyme expert, Dr. Charles Ray Jones, Frid has become an outspoken advocate for Lyme patients, and she hopes to create a unified voice and bring guidance to practitioners in the community. Here, she shares her insights on treatments, the cutting-edge concept of autoimmune encephalitis, and reviving the idea that we can heal from this illness.
Jenny Buttaccio (JB): Can you describe the types of patients you see in your practice?
Dr. Elena Frid (EF): Typically, the type of patients we see are young, healthy patients who all of a sudden start getting sick and can’t get better. They start accumulating diagnoses, and these diagnoses should get better with one or two treatment options or medications. But nothing seems to help them. We also see patients who have had Lyme disease for many years and been treated by other physicians in the Lyme community–they’re not getting better or have plateaued. Additionally, we see patients who have been examined by multiple physicians, and they still don’t have a diagnosis.
Symptom wise, we see a lot of cognitive issues and physical symptoms, such as difficulty walking and dizziness, which impedes day-to-day function. We also see a lot of intractable–meaning nothing is helping them–neuropsychiatric symptoms like depression or psychosis. In children, we see OCD (obsessive compulsive disorder), tics, or regressed behavior that is not getting better with mainstream treatments.
JB: As a neurologist, what perspective can you shed on Lyme disease that might be different from other doctors?
EF: Lyme is a multisystemic illness, and, in my experience, it primarily affects people neurologically. That’s where a neurologist comes into play with this disorder. A lot of what’s happening with the patient is an autoimmune phenomenon. They have inflammation of their peripheral nerves; they have inflammation of the brain that’s known as “autoimmune encephalitis.”
This subspecialty in neurology is very cutting-edge. It was first described in Japan about ten to 15 years ago when I was in training. Initially, we thought this autoimmune phenomenon occurred mainly in patients that had tumors or certain types of cancers. But, over the years, we realized that only about 40 percent of these patients have some malignancy or tumor. And the rest, 60 percent, we don’t know what’s wrong or why this is happening to them.
What I’ve been noticing in my practice is that these patients have an infection-induced phenomenon. A lot of neurologists and autoimmune neurologists–even the CDC– talk about this infectious process. Why this is a problem is because if you don’t treat the infections in the patient–which is ultimately the driving force in this condition–you will be chasing your tail. Therefore, treating these patients, both for their infectious etiology and the autoimmune phenomenon, has to occur simultaneously–Lyme patients are seriously complicated patients!
JB: Thank you for your interesting explanation on autoimmune encephalitis. When working with complex patients, what advice do you give to them to stay the course of treatment?
EF: What’s the advice that I give to patients? Stay motivated. A lot of what I do for my patients is really therapy to stay with a treatment plan. Patients must realize that one needs to identify every infection that’s going on with them and every disease process that’s happening. If there’s an autoimmune phenomenon, it needs to be recognized, and it has to be treated all at the same time. I’m not a proponent of treating each co-infection one at a time. In my opinion, they have to be identified and treated all at the same time. For children, as long as I have a good rapport with the parents, and I explain my end result to them, I think it’s a little easier for them to remain motivated. With adults, some of them need help to understand that they may feel worse before they get better.
Obviously, the earlier you treat [Lyme disease], the better the chances are of recovery. I tell my patients they will need to be treated for one to three years. However, there are anomalies where it will only take a couple of months for people to feel well or longer than three years. Certainly, not everyone falls into that time frame.
JB: In what ways are you educating the medical community about Lyme disease?
EF: Part of what I’ve done this year is go back to my alma mater (Robert Wood Johnson Medical School) and tell [students], “You don’t all need to go into treating Lyme disease, but there’s a huge problem, and you’re all being taught wrong.”
At least, tell them there is a controversy and let students dive into that on their own and make up their own minds!
JB: Are there any other remarks or comments you’d like to say about Lyme patients?
EF: If a patient has a diagnosis of chronic fatigue syndrome, fibromyalgia, neurologic issues, or potentially even some learning disabilities, these may actually be symptoms of Lyme disease because it is a multisystemic illness. Keep digging and explore other possibilities. If you feel something is wrong, something is wrong.
Also, it’s very difficult to see the light at the end of the tunnel, especially if you have had this illness for a long time. What I see on social media or in my office is that people are losing hope. Know the healing process does take time, but there is hope for those battling chronic Lyme disease.
If you’re searching for a healthcare provider, please contact ILADS to obtain a list of medical professionals in your area.
Jenny Lelwica Buttaccio, OTR/L, is an Occupational Therapist and certified Pilates instructor whose life was transformed by Lyme Disease, Chronic Fatigue Syndrome and Interstitial Cystitis. She is creator of the DVD, New Dawn Pilates: pilates-inspired exercises adapted for people with pelvic pain. Jenny is a health and wellness advocate and blogger who writes about her journey on [lymeroad.com] as she continues to pursue her personal healing with the support of her husband and two senior beagles. You can find her on Instagram: [jenny_buttaccio] or Twitter: [lymeroad]