“It’s Lyme; not limes!” was a comment a speaker made to students after someone used the term “limes” at a wellness summit I attended in May. He was referring to the tick-borne disease we commonly see today, particularly here on the East Coast and specifically in Pennsylvania. The condition, Lyme disease, was first identified in Lyme, Connecticut, hence the name. Far more challenging than the name, however, is its diagnosis and treatment, as well as overcoming the heavy toll it can potentially take on an infected victim’s wellbeing.

PREVALANCE

The incidence of Lyme disease varies by state. The highest rates by far are reported in the northeastern United States. In 2023, 89,000 cases were reported to the CDC by state health departments and the District of Columbia. Be aware that this method of reporting is only one way that public health officials track diseases. Using other tracking methods, approximately 476,000 people may be diagnosed and treated for Lyme disease each year in the United States, although this number may include cases of “clinical suspicion” and are not actually the disease.

Furthermore, many patients are misdiagnosed due to symptoms that mimic many other conditions including chronic fatigue syndrome, arthritis, fibromyalgia, flu, and more.

TRANSMISSION AND SPREAD

The bacterium that causes Lyme is called Borrelia burgdorferi. It is transmitted to humans through a bite from an infected blacklegged tick (a.k.a., deer tick).

Among humans, there is no evidence that Lyme disease is spread through sexual or household contact. For pregnant women, there is no current evidence indicating that the infection can be spread through breastfeeding. However, it can spread to the placenta; therefore, treatment should be sought if Lyme is suspected.

SYMPTOMS

As I noted above, the early signs can appear as flu-like symptoms and a rash. These symptoms can rapidly progress to arthritic, neurologic, as well as cardiac symptoms if not appropriately treated. Once a person is infected with the bacteria through a tick bite, there are typically three stages of Lyme disease, each with its distinct signs and symptoms.

Stage 1: Early Local Lyme Disease
In the early stage (day 3–30 following a tick bite), a patient may experience a red, oval or round rash. It is commonly called a “bull’s-eye rash” and officially called “erythema migrans” (EM). However, this type of rash is actually not as common as you might think. According to the CDC, only 70% of those infected will have an EM rash, leaving 30% of those infected with none. Meanwhile, presence of the classic bullseye rash should be considered diagnostic for Lyme. On average, the EM rash will occur about seven days after the initial tick bite. It may then move anywhere on the body and may be warm to the touch but is rarely itchy or painful.

Symptoms that commonly appear during this early stage include fever, chills, headache, muscle and joint pain, and swollen lymph nodes. Most cases of Lyme, particularly in our area of the country, occur in the late spring and summer. At this time of the year, flu is uncommon. Therefore, even if you have no rash but begin experiencing symptoms that mimic the flu during the summer months, consider that you may be suffering from Lyme disease.

Stages 2 & 3: Early & Late Disseminated Lyme Disease

Stage 2 of the disease may occur days to months after the initial tick bite, with Stage 3 occurring months to years afterward. These symptoms include, but are not limited to, severe headaches, neck stiffness, further EM rashes in other areas of the body, and severe joint pain and swelling. The joint pain and swelling often occurs in the knees and other large joints. 

Other symptoms may include “facial palsy” (drooping of one or both sides of the face). These symptoms may be confused with other conditions such as Bell’s palsy or even a stroke. Infected individuals might also experience intermittent pain in tendons, muscles, joints, and bones; heart palpitations or irregular heartbeat; dizziness; and shortness of breath.

Eventually, a person might experience nerve pain and inflammation of the brain and spinal cord once the infection passes into the central nervous system. There can also be other nerve-related symptoms including shooting pains, numbness, or tingling in the hands or feet. Much later in the process, short-term memory issues can occur.

DIAGNOSIS

Diagnosing Lyme disease, as I have stated, can be difficult, particularly if the symptoms are from an ongoing or chronic infection. While the EM rash is diagnostic particularly during the time that the classic “bullseye” rash is present, it is more often necessary to perform a blood test in order to make an accurate diagnosis. Further adding to the difficulties, even if the basic antibody test for Lyme is positive, it may not be definitive because the test can react to antibodies to other diseases and conditions. For this reason, a second test must be done to confirm that the antibodies identified in the first blood test are in fact antibodies to Lyme. 

The basic Lyme test is referred to as an ELISA test, and the second, more definitive full antibody test is called a Western Blot test.

TREATMENT

Appropriate treatment options are essential for the best outcomes. However, according to the International Lyme and Associated Disease Society (ILADS), “The optimal treatment regimen for the management of known tick bites, EM rashes, and persistent disease has not yet been determined.” They go on to say that “it is too early to make restrictive protocols.” 

Below, however, are the recommendations that ILADS makes:

• ILADS recommends against the use of a single 200 mg dose of doxycycline for the prevention of Lyme disease, which is commonly prescribed after a person is bitten by a tick. Not only is it unlikely to be highly efficacious, in the human trial failed therapy led to a seronegative disease state.
  
  
• Based on animal studies, ILADS recommends that known blacklegged tick bites instead be treated with 20 days of doxycycline (barring any contraindications).
  
  
• Given the low success rates in trials treating EM rashes for 20 or fewer days, ILADS recommends that patients receive 4–6 weeks of doxycycline, amoxicillin, or cefuroxime. A minimum of 21 days of azithromycin is also acceptable, especially in Europe. All patients should be reassessed at the end of their initial therapy and, when necessary, antibiotic therapy should be extended.
  
  
• ILADS recommends that patients with persistent symptoms and signs of Lyme disease be evaluated for other potential causes before instituting additional antibiotic therapy.
  
  
• ILADS recommends antibiotic retreatment when a chronic Lyme infection is judged to be a possible cause of the ongoing manifestations and the patient has an impaired quality of life.

I emphasized the statement above about ongoing infections because some patients have been known to undergo extensive, long-term antibiotic therapy without a definitive diagnosis of the ongoing symptoms in order to justify the long-term treatment.

We must recognize that from a holistic standpoint, the core issue with any infection such as a chronic Lyme infection is inflammation. To that end, when we have a chronic infection of Lyme or any other pathogen, the “fire” must be tamped down. There have been many non-conventional therapies that have been suggested to be helpful in mitigating the adverse effects of a chronic Lyme infection. These include “natural” therapies geared toward reducing inflammation and bolstering immune function.

I would emphasize, however, that antibiotic therapy is always necessary with an acute Lyme infection and may be needed even with a chronic infection. But many other things come into play with a chronic Lyme infection. Let’s take a moment to explore the challenges in treating anyone suffering from chronic Lyme disease.

First, in order for a complete understanding of “chronic” Lyme disease, it is important to acknowledge that it exists. Chronic Lyme Disease Complex differs from “Post-Lyme Disease Syndrome” (PLDS). This condition is also referred to as Post-Treatment Lyme Disease Syndrome (PTLDS).

The CDC defines PTLDS symptoms as including pain, fatigue, as well as difficulty thinking that lasts for greater than six months after standard treatment has completed.

THE COMPLICATION OF CO-INFECTIONS

In order to diagnose and treat this condition properly, we must acknowledge that, when Lyme disease occurs, there are often “co-infections” that may occur as well. According to the National Institute of Allergy and Infectious Diseases (NIAID): “…co-infection can affect the amount of microbes in the body and antibody responses.”

These co-infections are typically related to specific microbes that are injected into the host when the tick bites and injects the primary spirochete causing Lyme disease called Borrelia burgdorferi. The co-infections can include Babesia, Bartonella, Ehrlichia, and Anaplasma.

Let’s take a look at the two most commonly seen co-infection microbes (Babesia and Bartonella) and how they may continue to cause symptoms after standard treatment concludes for a Lyme disease infection.

Babesia is one of the most commonly noted co-infecting organisms reported in chronic Lyme infections. This infecting organism is a malaria-like pathogen. The most common form of this pathogen infecting humans is Babesia microti. It is actually not a bacterium; instead, it is a parasite. Therefore, it doesn’t respond to treatment with antibiotic therapy alone. It must be treated with anti-parasitic as well as antibiotic therapies.

Babesia works by infecting blood cells, and therefore it is not easily diagnosed by standard blood tests. It must be diagnosed through specialized microscopic blood analysis. For this reason, it is often left undiagnosed and untreated or not appropriately treated.

It is also of interest to those who have or may in the future have a blood transfusion that blood banks do not currently test for this pathogen.

Babesia itself causes symptoms like those of Lyme disease. These symptoms include high fever and chills initially. However, later the symptoms can progress to include fatigue, headaches, drenching sweats, muscle aches, chest pain, hip pain, and shortness of breath.

Babesia infections can be life-threatening to those who have had a splenectomy (removal of the spleen), the elderly, and those with a weak or compromised immune system. Complications of a Babesia infection long-term can be extremely low blood pressure, liver problems, severe forms of anemia, and kidney failure.

Like with most parasitic infections, relapses can occur and follow-up treatment is then necessary.

Another potential co-infection that may occur when Lyme disease is diagnosed is called bartonellosis. The most commonly recognized form of bartonellosis is called cat scratch disease. The condition is caused by a bacterium known as Bartonella. This specific bacterial species can be transmitted through tick bites as well as through fleas and body lice. The infections cause inflammation in the inner linings of the cardiovascular system and can result in various life-threatening conditions including endocarditis. The early symptoms of bartonellosis include fever, fatigue, headache, poor appetite, and an unusually unique rash that can resemble stretch marks from pregnancy. In some cases, swollen glands occur, particularly around the head, neck, and arms.

Many patients suffering from bartonellosis experience neurologic symptoms and will often have had multiple visits to a neurologist. Some of the symptoms that prompt a patient suffering from bartonellosis to visit a neurologist include numbness in the extremities, memory loss, balance issues, headaches, unsteady gait, and tremors. Long-term infections can cause psychiatric manifestations.

Similar to other co-infections of Lyme, bartonellosis is difficult to diagnose. According to Dr. Ed Breitschwerdt, professor of Veterinary Science at North Carolina State University who has studied bartonellosis extensively, the standard blood test for bartonellosis may be negative one time and positive another. Other tests can be used, however, may not be any more reliable. These include the PCR (polymerase chain reaction) test and tissue biopsy, which can also be used to check for the condition. However, in chronic cases, the condition can be very difficult to diagnose.

Treatment of the condition can be very challenging as well. Conventional medical therapies often combine multiple antibiotic combinations to treat the condition, including doxycycline.

PRECAUTION AND ACTION

Obviously it’s important to take precautions to prevent tick-borne disease, which means preventing tick bites. Check out the Lyme disease portion of the Environmental Working Group's consumer guide to bug repellents for suggestions.

However, if you remove a tick that has bitten you, save it. You can put it in a baggie and send it to ticklab.org for testing. If you live in Pennsylvania, this service is FREE. Also, if you experienced a tick bite and are concerned about the potential of a Lyme infection, you should seek early, appropriate diagnosis and treatment. Finally, if you suspect that you may be experiencing symptoms related to a chronic Lyme infection, it is important that you seek out a doctor that has knowledge of the potential co-infections that may exist and can run appropriate tests and incorporate effective therapeutic modalities. ILADS has a provider search on their website.

We at the Center assist patients with labs, diagnosis, and treatment of chronic Lyme and the co-infections. Do not hesitate to call us, because no matter how you say it (correctly "Lyme” or incorrectly “limes”) untreated Lyme disease will steal your quality of life.