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

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Image by Carey Shaw / Stocksy
February 19, 2022
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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).

To help bring a bit more insight into the matter, I chatted with Christine Green, M.D., a Stanford-trained and board-certified integrative family medicine physician with 30 years of experience treating patients with tickborne illness. In this Q&A, she discusses common symptoms you need to know, along with the diagnostic process for Lyme disease and other tickborne diseases.

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Q: I'm achy and tired all the time. Could I have Lyme disease?

The answer is yes, possibly. When a patient comes into my clinic for the first time, I take down their clinical history. If I suspect tickborne disease, I ask if they've been exposed to ticks or tick habitats. Have they observed any rashes? The typical Lyme rash expands and is ringlike, usually not itchy or painful. If it's under a person's hairline, between the toes, or on the back of the body, it may not be noticed. At least 21% of Lyme patients, and probably more than 50%, never see a tick or a rash. 

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.

Patients can also experience cardiac symptoms, including irregular heartbeats, chest pain, or dizziness. These patients often come in misdiagnosed with old age, depression, anxiety, or hypochondriasis (preoccupation with an imagined illness). Another presentation of this disease is chronic pain. The pain can be widespread and migrate around the body. These patients often come in with a diagnosis of fibromyalgia or new-onset migraine headache.

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Q: What's the best test for diagnosing Lyme disease?

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.

One tick can inject multiple species of disease-causing microbes into a single blood meal, so, based on symptoms, I sometimes test for other tickborne infections. If a patient has night sweats, shortness of breath, stabbing chest pains, or autonomic symptoms (dizziness, nausea, vertigo, flushing), I'll test for babesia, a malaria-like red blood cell infection. For a pinprick rash on the extremities and/or severe illness, I'll test for spotted fever. Bartonellosis can present in many ways, including neuropathy, or neuropsychiatric symptoms, such as panic attacks, rages, psychosis, and obsessive-compulsive disorders. 

Q: Why are some physicians hesitant to test for Lyme disease?

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.

The other guideline is sponsored by the International Lyme and Associated Diseases Society (ILADS), and it includes peer-reviewed patient data that demonstrates that Lyme with other tickborne infections can result in a complex disease that affects multiple body systems. The ILADS guideline also includes peer-reviewed, evidence-based advice on testing and treatments that are likely to eradicate Lyme infections. The guidelines encourage physicians to treat patients until they feel better with targeted antimicrobial therapies.

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Q: Once diagnosed, how should you treat Lyme disease?

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. 

I treat late Lyme patients with severe degenerative neurologic or rheumatologic cases aggressively. As noted above, the very sick patients frequently have a mixture of tickborne infections. For these patients, I choose a combination of oral or, when needed, intravenous antibiotics that target the pathogens known to be present.

Q: Can you cure chronic Lyme disease?

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.

I assess symptoms at the beginning of each visit, then treat until symptoms improve or resolve. For any patient who is ill for an extended time, after the illness is controlled, I initiate rehabilitation protocols to help the person feel normal again. A patient must become fit to fully recover from a protracted state of ill health.

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Q: Why don't many Lyme specialists accept medical insurance?

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.

(To look into financial aid for diagnosis and treatment, visit this website.)

Q: Why is Lyme disease so controversial?

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. 

For a checklist of common Lyme disease symptoms or to find an experienced tickborne-disease physician, visit the Lymedisease.org website. To learn more about diagnosing and treating vector-borne diseases, watch Invisible International's online, evidence-based physician medical education courses.

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Kris Newby
Kris Newby
mbg Contributing Writer

Kris Newby is an award-winning science writer and the senior producer of the Lyme disease documentary UNDER OUR SKIN, which premiered at the Tribeca Film Festival and was a 2010 Oscar semifinalist. Her book BITTEN won three international book awards for journalism and narrative nonfiction. She is currently Communications Director at Invisible International, a nonprofit working to alleviate the suffering cause by invisible illness.