7 Crucial Things To Know About Lyme Disease, From A Tickborne Illness MD

There are so many misconceptions and confusion around Lyme disease—and it's time to get a little more clarity. In my personal experience, it took nine different doctors and eight months' time to finally reach my Lyme diagnosis (you can read more about my health journey here).

Early Lyme patients present with flu-like symptoms. Tick bites and resulting symptoms often occur in the summer, but in my California practice, Lyme season may overlap with the fall/winter flu season, confusing the diagnostic picture.

Next, I do a complete physical exam, with an emphasis on neurological deficits, such as loss of balance, tremors, facial asymmetry (Bell's palsy), and asymmetric reflexes. Then, I ask about the progression of their symptoms over time. In the first few months of Lyme disease, patients often experience malaise, fatigue, mild to severe headaches, nerve pain or tingling in the hands or feet, all in a relapsing-remitting course. In other words, the symptoms wax and wane.

If Lyme is diagnosed four or more months after symptom onset, the picture of the disease is different and variable. The longer between infection and diagnosis, the higher likelihood that more bodily systems have been invaded. Late-stage patients tend to have peripheral nerve symptoms that come and go and symptoms that migrate to joints, muscles, and/or nerves. Most patients with late Lyme have encephalopathy, inflammation of the brain that reduces blood supply in some areas. It can manifest as sleep problems, memory issues, word-recall problems, or difficulty reading or carrying out executive functions, the mental processes that enable us to plan, focus, remember instructions, and juggle multiple activities. For instance, a person who organizes large events might find that they have trouble completing and sequencing tasks. Things that used to take minutes take hours.

First and foremost, Lyme disease, as with any disease, should be diagnosed based on a clinical history and physical exam, not by test results alone. It's important to note that the complex, conservative two-tiered testing criteria for "CDC positive cases" was developed for disease tracking only, and I don't believe it should be the sole criteria physicians use for diagnosis or denying treatment to patients. What's more, not all Lyme tests are created equal. The major labs typically look for only one strain of Lyme bacteria, the B31 strain of Borrelia burgdorferi. I prefer using specialized labs that test for multiple Lyme strains. Three of the labs I use are MDL, Galaxy, and Igenex.

It may be an issue related to the two sets of medical guidelines for diagnosing and treating Lyme disease. Each advises a very different treatment regimen. Most physicians follow the Infectious Diseases Society of America (IDSA) guidelines, primarily written by academic researchers at large medical institutions. The IDSA criteria presume that Lyme disease is an acute, simple disease that is usually easy to diagnose, treat, and cure. These physician-researchers are uncomfortable with the multiple, complex clinical presentations of late or persistent Lyme disease that the front-line physicians are observing. Based on IDSA guidelines, these more complicated cases don't fit into a symptom profile that warrants a Lyme test.

Research over the last three decades suggests that Lyme bacteria have multiple ways of evading the human immune system and that treating acute Lyme with 21 days of antibiotics fails approximately a third of patients. For that reason, I treat in two phases. For early Lyme, I treat with four weeks of doxycycline, amoxicillin, or cefuroxime antibiotics. I follow this up with four more weeks of drugs that prevent and eradicate "persister" forms of the bacteria. The persisters are drug-tolerant and can revert to an active infection once the antibiotics are stopped. 

In my practice, I've helped many of my tickborne-disease patients return to full health. Every patient is unique, with different genetics, comorbidities, and co-infections. To me, the important thing is to evaluate clinical response and not to cut off treatment at some arbitrary endpoint.

Many of the sickest tickborne-disease patients end up in my clinic, and the delays, paperwork, and restrictions on treatment and test options imposed by insurance companies often threaten the well-being of patients. More importantly, there are only medical diagnostic codes for acute/early Lyme, not chronic/late Lyme. (A diagnostic code is used by the insurance company to decide what tests/treatments will be reimbursed by insurance.)

A first-time patient who has a chronic, long-term infection typically requires at least two hours just to take down a medical history and do the physical exam. Getting to the bottom of what is causing the illness requires multiple blood tests, scans, and other studies to confirm or deny different possible causes. Oddly, insurance reimbursement rewards doctors for the volume of patients seen, not for successful diagnoses and treatments that improve patient health.

Time is of the essence in treating my tickborne-disease patients and delaying necessary testing just because it falls outside of insurance company guidelines harms patients. I went into medicine to help my patients regain full health and experience joy; I didn't choose this profession to battle insurance companies.

The controversy is mostly centered around whether persistent Lyme disease symptoms are caused by an active bacterial infection or an autoimmune condition, where a person's immune system attacks the body after the microbes have been eradicated by antibiotics. Based on my experience treating hundreds of patients and actively reviewing new evidence on chronic Lyme out of Tulane and Johns Hopkins, I have no doubt that the Lyme disease bacteria is capable of hiding out in the body for months to years, causing destructive long-term inflammation and illness.

The challenge is getting the best diagnostic and treatment evidence out in a timely manner so that our "first responders" in medicine—emergency room physicians and primary care doctors—recognize early Lyme so that none of these patients reach the potential chronic stage, where long-term damage can prevent a full recovery. I'm currently working with a nonprofit, Invisible International, to accelerate this process. The bacterium that causes Lyme disease was discovered in 1981, 40 years ago, and I believe medicine can do better by these patients.