Nearly half a million Americans are diagnosed and treated for Lyme disease each year, according to CDC estimates. That is far more than appear in routine surveillance, which CDC researchers have estimated may underreport Lyme disease by roughly 3- to 12-fold.[1,2]

Most reported cases remain concentrated in the Northeast, mid-Atlantic, and upper Midwest, but Lyme is not confined to those areas. Cases have been reported across the country, including states considered low incidence. And Lyme does not always arrive in the way people expect. You may never see the tick or develop the classic bull's-eye rash, and an early Lyme test can be negative.

Lyme is easy to recognize when all the pieces line up. The challenge is that they often don't.

Lyme Does Not Always Look Like Lyme

Lyme disease begins with infection by Borrelia, transmitted in the United States primarily by infected blacklegged ticks, also called deer ticks. These are not the larger ticks many people picture. An adult blacklegged tick is only about the size of a sesame seed, and the nymphs responsible for many Lyme infections are even smaller, closer to a poppy seed. It is easy to be bitten without ever knowing the tick was there.

Early Lyme can cause fever, headache, fatigue, muscle and joint pain, swollen lymph nodes, and the expanding rash known as erythema migrans, or EM. The rash does not always form the familiar target pattern, and some people never notice one. As the infection spreads, it can affect the nervous system, heart, and joints, producing symptoms that may look very different from the illness that began with the tick bite.[3]

Testing can add to the confusion. Standard Lyme blood tests usually look for your antibodies to Borrelia rather than directly detecting the organism. Early in the infection, your immune system may not yet have produced enough antibodies for the test to become positive. Later, those antibodies can remain detectable for months or years.[4]

The meaning of a Lyme test therefore depends partly on when it is done. A characteristic erythema migrans rash in the appropriate clinical setting can be enough to diagnose and treat Lyme without waiting for a positive blood test.[5]

When Lyme Is Caught Early

Once early Lyme is recognized, the path is usually much clearer. Doxycycline, amoxicillin, and cefuroxime are among the antibiotics commonly used, depending on the circumstances, and most people treated appropriately during early Lyme recover rapidly and completely.[5]

For some, however, the antibiotics end and the illness does not. Months later, you may still be exhausted. Your thinking may be slower. Exercise that once made you feel better can put you in bed the next day. Sleep changes. Pain moves around. You may experience dizziness, palpitations, numbness, headaches, gastrointestinal problems, or an increasing sensitivity to foods, medications, chemicals, or even treatments intended to help you.

Some people were never diagnosed during the acute illness. Others were diagnosed and treated, improved for a while, and then relapsed. Still others have received multiple rounds of treatment and remain sick years later. These are the patients for whom knowing the name of the original infection is no longer enough to explain the illness they are living with.

What Happens After the Infection?

The CDC uses the term Post-Treatment Lyme Disease Syndrome, or PTLDS, for prolonged symptoms following recommended Lyme treatment.[6] I use the broader clinical term Post-Acute Sequelae of Lyme, or PASL, because I want to understand the illness that exists now, including whether Borrelia or another microbial pressure remains relevant and what months or years of illness have done to the person who was infected.

An infection occurs inside a living system. Borrelia has biological mechanisms that allow it to respond to changing conditions, including ways of evading immune recognition, occupying different tissues, and altering its metabolic activity and gene expression. I group these and other potential microbial survival mechanisms under Stealth Pathology.

You adapt too.

Your immune system responds to infection and your nervous system responds to threat. Energy is redirected. Sleep, metabolism, circulation, the microbiome, inflammation, repair, and your ability to tolerate stress can all change during prolonged illness. Many of these responses begin as the body's attempt to protect you, but over time they can begin influencing one another and changing the biological terrain in which recovery has to occur.

The bug changes you. You change the terrain in which the bug lives. Treatment changes that terrain again. This is the intricate dance between the bug and the patient, and after months or years of that dance, two people who began with the same infection may be dealing with very different illnesses.

The Diagnosis Is Lyme. The Illness Is Yours.

I began seeing this repeatedly while teaching physicians about chronic infection for the Institute for Functional Medicine. Doctors from around the world referred some of their most complicated patients to me, and many had already done what I was teaching. They had taken antibiotics and antimicrobial herbs, changed their diets, worked on their gut, taken supplements, and tried increasingly complicated combinations of treatment, yet they were still sick.

I eventually realized that another protocol was not going to solve the problem. I needed to understand why this person was still sick after everything they had already done.

As I looked across these difficult cases, patterns emerged. Sometimes microbial pressure still appeared important. Sometimes the physiological changes that developed during prolonged illness had become a much larger part of the problem. Some people had very little capacity left to tolerate treatment, while others had vulnerabilities that existed long before the tick bite and influenced everything that followed. Most complicated patients had several of these forces interacting at the same time.

Those patterns eventually became Precision Lyme Management, or PLM.

A Map of the Illness You Have Now

PLM organizes those patterns into five interconnected domains: Antecedents, Stealth Pathology, Host PASI, Resilience, and Healing Fields. Antecedents looks at the terrain you brought into Lyme. Stealth Pathology examines microbial and other hidden pressures that may still be operating. Host PASI looks at what prolonged illness has done to you physiologically. Resilience describes your capacity to adapt, tolerate treatment, and recover, while Healing Fields examines the physical, psychological, social, and environmental conditions surrounding recovery.

The value of the map is not in creating five more lists of things to treat. It is in understanding how these different parts of the illness are interacting in you.

For one person, microbial pressure may still deserve considerable attention. Another may need to rebuild enough physiological capacity to tolerate treatment before pushing harder against microbes. Someone else may have accumulated years of therapies directed at problems that are no longer the problems keeping them sick.

This is also why the map cannot be static. Treatment changes the person and the terrain. What helps, what fails, what causes a setback, and what becomes easier all provide information that can be used to reassess where you are and what should come next.

The Question Changes

If you have an expanding erythema migrans rash after a recent tick exposure, the central problem is relatively clear: you have an infection that needs appropriate treatment.

If you are still sick three years later after antibiotics, herbs, supplements, dietary changes, and multiple attempts to recover, knowing that you have Lyme disease is no longer enough.

A diagnosis tells us how you resemble other people with that diagnosis. It does not tell us what the illness has done to you.

That requires a map.



References

1. Centers for Disease Control and Prevention. Lyme Disease Surveillance and Data.
2. Kugeler KJ, Schwartz AM, Delorey MJ, Mead PS, Hinckley AF. Estimating the Frequency of Lyme Disease Diagnoses, United States, 2010–2018. Emerging Infectious Diseases. 2021;27(2):616–619.
3. Centers for Disease Control and Prevention. Signs and Symptoms of Untreated Lyme Disease.
4. Centers for Disease Control and Prevention. Testing and Diagnosis for Lyme Disease.
5. Centers for Disease Control and Prevention. Clinical Treatment of Erythema Migrans Rash.
6. Centers for Disease Control and Prevention. Chronic Symptoms and Lyme Disease.