Lyme and PANS: A Critical Connection in Teenagers

At just 16, my patient found herself facing a complex and overwhelming set of symptoms. What began as ordinary teenage stress evolved into something far more debilitating—raging outbursts, severe compulsions, motor and vocal tics, and memory problems. Her academic performance plummeted, and her social life disintegrated. Diagnosed with Pediatric Acute-onset Neuropsychiatric Syndrome (PANS), she and her family embarked on a challenging journey for answers.

PANS, a condition characterized by the sudden onset of severe neuropsychiatric symptoms, is often triggered by infections or autoimmune responses. These symptoms include obsessive-compulsive behaviors, severe anxiety, and a wide array of neurological issues. In my patient's case, the impact was profound, disrupting nearly every aspect of her life.

A Frustrating Treatment Journey

Her school quickly implemented a 504 plan to accommodate her needs, but even with these supports, she struggled to attend classes regularly. The academic gaps widened, and the isolation grew. Initially, her treatment focused on intravenous immunoglobulin (IVIG) therapy, a standard approach for PANS aimed at modulating the immune system. Unfortunately, despite several courses of IVIG, her symptoms persisted, leading to a sense of despair for both her and her family.

The Lyme Disease Connection

It wasn’t until the family explored further that they discovered a potential link between Lyme disease and PANS. Lyme disease, transmitted by ticks and caused by the Borrelia burgdorferi bacterium, is notorious for its wide range of symptoms, many of which can overlap with neuropsychiatric disorders. When Lyme disease enters the picture, it can trigger or exacerbate PANS, leading to an even more complicated clinical scenario.

Upon testing, my patient was diagnosed with Lyme disease and a co-infection, which had gone undetected. The realization that these infections were contributing to her PANS symptoms was a breakthrough. She began antibiotic therapy, which is often essential in treating Lyme disease, especially when co-infections are involved. Over time, this approach started to pay off—her symptoms gradually improved, the rage outbursts and compulsions became less frequent, and her cognitive function began to recover.

Chronic Lyme disease, characterized by persistent symptoms that can linger for months or even years, is a growing concern for both patients and healthcare providers. Traditionally, Lyme disease has been seen as a straightforward infection—diagnosed early, treated with antibiotics, and resolved. However, for a significant number of people, Lyme disease can evolve into a chronic condition, marked by ongoing fatigue, pain, and cognitive issues. But what if much of this chronic suffering could be prevented?

Recent insights suggest that the progression to chronic Lyme disease might be mitigated, or even prevented, by focusing on several key factors. This approach is similar to how we prevent other chronic diseases like type 2 diabetes or heart disease: through early detection and appropriate treatment.

**The Importance of Early Diagnosis and Treatment**

One of the most critical steps in preventing chronic Lyme disease is the early diagnosis and treatment of the infection. When a patient presents with a tick bite or early symptoms of Lyme disease, such as the characteristic erythema migrans rash, it’s vital to begin treatment promptly. Early intervention with antibiotics like doxycycline can significantly reduce the risk of the infection progressing to a chronic stage.

Moreover, it’s essential to maintain a vigilant follow-up process. Even after initial treatment, patients should be asked to return for evaluation if symptoms persist or recur. Lyme disease can sometimes be insidious, with symptoms reappearing after what seems like successful treatment. Regular follow-ups allow healthcare providers to monitor the patient’s progress and catch any signs of relapse early.

**Look for Co-Infections**

Co-infections are another critical factor in the progression of Lyme disease to a chronic condition. Ticks often carry more than just Borrelia burgdorferi, the bacteria responsible for Lyme disease—they can also transmit other pathogens like Babesia, Bartonella, and Anaplasma. These co-infections can complicate the clinical picture and may require different treatments. It’s important to test for and consider co-infections, especially if a patient’s symptoms do not resolve with standard Lyme treatment. Addressing all possible infections early on can prevent the persistence and worsening of symptoms.

**Consider Retreatment**

In cases where initial treatment does not fully resolve the symptoms, it may be necessary to consider retreatment. Clinical judgment plays a crucial role here. While some cases of Lyme disease respond well to the standard course of antibiotics, others may require a more prolonged or alternative treatment approach. Retreatment should be considered for patients who continue to experience significant symptoms, particularly if they show signs of ongoing infection or co-infections.

**Follow-Up Care is Crucial**

Consistent follow-up care is essential in managing Lyme disease and preventing its progression to a chronic state. Even after symptoms appear to have resolved, patients should be monitored for any signs of recurrence or new symptoms. Chronic Lyme disease can sometimes develop months or even years after the initial infection, making long-term follow-up a key component of care.

**Environmental Awareness and Preventive Measures**

**Raising Awareness and Improving Access to Care**

The likely reason for relapse is failure to eradicate the spirochete completely with a two-week course of intravenous ceftriaxone therapy,” wrote Drs. Logigian, Kaplan, and Steere in their seminal 1990 paper on chronic neurologic Lyme disease. This observation remains as relevant today as it was over three decades ago, highlighting a persistent challenge in the treatment of Lyme disease: the difficulty in fully eliminating the Borrelia burgdorferi bacterium, which can lead to relapse or persistent symptoms even after what is considered adequate treatment.

In chronic Lyme disease, or what is often referred to as Post-Treatment Lyme Disease Syndrome (PTLDS), patients continue to suffer from symptoms such as fatigue, pain, and cognitive difficulties long after completing the standard antibiotic courses. This condition has sparked considerable debate within the medical community. Some experts believe that ongoing symptoms are due to lingering effects of the initial infection, while others propose that they may be due to an active, persistent infection that was not fully eradicated by the initial treatment.

The 1990 study by Logigian, Kaplan, and Steere explored these possibilities by examining patients who had been treated with a two-week course of intravenous ceftriaxone. Despite this treatment, some patients either relapsed or failed to recover fully, leading the authors to speculate that the spirochete might not have been completely eradicated. This concept has been supported by subsequent studies suggesting that Borrelia burgdorferi can persist in the body in a dormant state, possibly shielded within tissues where antibiotics have limited penetration.

More recent research has further explored the idea of persistent infection. Studies have shown that Borrelia burgdorferi can form biofilms—complex communities of bacteria that are more resistant to antibiotics. These biofilms could potentially harbor bacteria that re-emerge after the initial course of antibiotics is completed, leading to the recurrence of symptoms.

Moreover, the nature of Lyme disease itself complicates treatment. The bacterium Borrelia burgdorferi can exist in multiple forms—spirochete, round-body, and biofilm—which might require different antibiotics or treatment approaches to fully eradicate. This complexity may explain why some patients do not respond to the standard treatment regimen.

For patients like mine, who experience a relapse after standard treatment, the journey can be frustrating and disheartening. The initial hope of recovery is replaced by confusion and concern when symptoms return or persist. This situation emphasizes the need for ongoing research into more effective treatment strategies for chronic Lyme disease, including longer antibiotic courses, combination therapies, and alternative treatments that address the different forms the bacterium can take.

The challenge of treating chronic Lyme disease also raises important questions about the broader healthcare system’s approach to this condition. There is a pressing need for more awareness among healthcare providers, more research funding to explore the underlying mechanisms of persistent infection, and better support systems for patients navigating the complexities of this illness.

In conclusion, the issue of relapse in Lyme disease treatment is not just a clinical problem but also a deeply personal one for patients who struggle to regain their health. It highlights the importance of individualized treatment approaches, ongoing patient support, and the continuous pursuit of knowledge to develop more effective treatments for this complex and often misunderstood disease.

My patient recovered from her chronic illness after receiving early aggressive treatment, a result that underscores the importance of this approach in managing Lyme disease.

Chronic illness resulting from Lyme disease is one of the most compelling reasons I advocate for early aggressive treatment. Lyme disease is not just a simple infection; if left inadequately treated, it can lead to a range of severe and persistent conditions. Chronic neurologic Lyme disease can cause debilitating symptoms such as cognitive impairments, severe headaches, and neuropathy. POTS (Postural Orthostatic Tachycardia Syndrome) and PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) are other serious complications that can significantly disrupt a patient’s life, leading to symptoms like dizziness, rapid heart rate, and sudden behavioral changes.

Lyme arthritis, another potential outcome, can cause long-term joint pain and swelling, making daily activities difficult. Lyme carditis, which affects the heart, can lead to dangerous complications, including heart block and arrhythmias. Neuropsychiatric Lyme, involving mood disorders, anxiety, and cognitive dysfunction, adds an additional layer of complexity to the patient’s condition, affecting mental health and overall quality of life.

Given the high stakes, early aggressive treatment becomes not just an option but a necessity. By intervening quickly and with a comprehensive treatment plan, we can reduce the risk of these chronic manifestations taking hold. In my experience, starting treatment early—often before the full spectrum of symptoms has developed—can make a significant difference in the patient’s prognosis.

This approach also involves treating potential co-infections like Babesia and Bartonella from the outset, even if they haven’t been fully confirmed. These co-infections can complicate the clinical picture and contribute to the persistence of symptoms if not addressed early. By being proactive and thorough, we can give patients the best chance of a full recovery and prevent the long-term complications that make Lyme disease so challenging.

Ultimately, early aggressive treatment is about more than just addressing an infection; it’s about preventing the transition from an acute illness to a chronic, life-altering condition. It’s about giving patients the opportunity to regain their health and quality of life as quickly as possible, without the lingering fear of ongoing or worsening symptoms. The success of this approach with my patients reinforces its importance and validates the need for a proactive, comprehensive strategy in treating Lyme disease. 

When I first began treating Lyme disease, I adopted an “escalation” approach. This method involved starting with a standard course of doxycycline, typically lasting a month, and then observing how the patient responded. If the symptoms persisted or if I suspected that a co-infection might be present, I would escalate the treatment—adding or changing medications as needed. This approach was cautious and reactive, focusing on adjusting the treatment plan based on the patient’s progress over time.

However, through years of experience and patient outcomes, I’ve shifted my strategy to what I now call an “early aggressive” treatment approach. Rather than waiting to see if symptoms persist or worsen, I take proactive steps right from the start. 

• I start treatment as soon as possible after initial symptom onset to give patients the best chance of minimizing a chronic illness
• I maintain a low threshold for switching therapies when there is breakthrough disease activity (clinical relapses and/or continued illness) -- this may help prevent chronic illness
• If a patient has an inadequate (subtherapeutic) treatment response to a antibiotic, choose another antibiotic with a different mechanism of action. 

If I suspect a co-infection with Babesia, I start treatment with atovaquone right away. This is crucial because Babesia requires different treatment than Lyme disease and can significantly impact recovery if not addressed early. Similarly, if Bartonella is a possibility, I begin treatment early, even if I’m not sure of the exact source.

Similarly, if I suspect Bartonella, another common co-infection, I begin treatment early, even if I haven’t confirmed whether the infection was transmitted by a tick or a cat. Bartonella can cause a range of symptoms that complicate Lyme disease, and early intervention can prevent the condition from becoming more severe or chronic.

This “early aggressive” approach represents a significant shift from the more traditional, wait-and-see methods. The reasoning behind this shift is rooted in the understanding that Lyme disease and its co-infections can be relentless and complex, with symptoms that vary widely among patients. By addressing potential complications head-on and without delay, I’ve seen much better patient outcomes. Recovery times are often shorter, and the risk of developing chronic symptoms is reduced.

Moreover, this approach is not just about quicker recovery—it’s also about improving the overall patient experience. Lyme disease can be a devastating condition, both physically and emotionally. The uncertainty and frustration that come with prolonged illness can take a significant toll on a patient’s mental health and quality of life. By being proactive and addressing all possible aspects of the disease early, I can provide my patients with a clearer path to recovery and reduce the likelihood of prolonged suffering.

In summary, my move to an “early aggressive” treatment strategy has been shaped by my commitment to providing the best possible care for my patients. This approach allows me to tackle Lyme disease and its co-infections more effectively, offering patients a better chance at a swift and complete recovery. It’s about being proactive, thorough, and responsive to the complex nature of tick-borne illnesses, ensuring that no stone is left unturned in the quest to restore my patients’ health.

The treatment landscape for Lyme disease has undergone significant evolution over the years, offering a wider array of options to manage this multifaceted illness. When I first began treating Lyme disease in 1987, the primary antibiotic prescribed was doxycycline. This choice was driven by doxycycline’s effectiveness not only against Lyme disease itself but also against co-infections such as Ehrlichia and Anaplasmosis. These co-infections, often transmitted by the same ticks that carry Lyme, present additional challenges in patient management. However, when patients couldn’t tolerate doxycycline due to side effects or failed to respond to the treatment, rifampin emerged as a viable alternative.

For pediatric patients, the treatment approach required special consideration. amoxicillin was commonly used to avoid the risk of dental staining associated with doxycycline, which can be a concern for growing children. However, the limitation of amoxicillin lies in its inability to combat co-infections like Ehrlichia or Anaplasmosis. Over time, other antibiotics related to amoxicillin, such as Pen VK, IM Bicillin, Omnicef, and Ceftin, became available. Of these, Ceftin (cefuroxime axetil) is notably the only one FDA-approved specifically for Lyme disease, reinforcing its role in the treatment regimen.

When dealing with neurologic Lyme disease, which can involve the central nervous system and present with symptoms such as memory loss, cognitive difficulties, and neuropathy, the approach often necessitates more aggressive treatment. Intravenous (IV) antibiotics like ceftriaxone (Rocephin) and Claforan were preferred due to their ability to cross the blood-brain barrier, a crucial factor in effectively treating neurological manifestations. These IV antibiotics are essential for some patients, particularly those with severe or persistent symptoms, but they are not without risks. The use of PICC lines for IV administration carries potential complications, including infections and blood clots. Interestingly, in my experience, many patients with chronic neurologic Lyme have shown significant improvement with oral antibiotics, allowing them to avoid the complexities and risks associated with IV treatments.

For patients who are allergic to or unable to tolerate doxycycline, or for those who are sun-sensitive—a common side effect of doxycycline—Zithromax (azithromycin) and Biaxin (clarithromycin) have emerged as effective alternatives. These antibiotics belong to the macrolide class and have shown efficacy comparable to doxycycline in the majority of clinical studies, offering additional options for patient care.

In the treatment of co-infections like Bartonella, the approach becomes more nuanced. Bartonella, initially identified as the causative agent of cat scratch fever, has been a subject of ongoing debate in the context of Lyme disease. This bacterium is traditionally associated with transmission through cat scratches, where the bacteria are introduced under the skin from cat saliva or flea feces. However, there is growing evidence suggesting that Bartonella may also be transmitted via tick bites, complicating the clinical picture for Lyme disease patients. In treating suspected Bartonella co-infections, I have employed antibiotics from the doxycycline, Zithromax, and rifampin families, drawing on research related to cat scratch fever. Additionally, I have used Bactrim (trimethoprim-sulfamethoxazole) in some cases. However, I generally avoid fluoroquinolones like ciprofloxacin due to their association with severe side effects, including joint pain, tendonitis, and tendon ruptures.

Babesia, another common co-infection found in Lyme disease patients, requires a different treatment approach altogether. Babesia is a parasite that infects red blood cells, causing symptoms similar to malaria. For treating Babesia, I often prescribe atovaquone, availa

Since opening my Lyme disease practice in 1987, I’ve witnessed significant changes in how we diagnose and treat this complex illness. Early on, I prescribed doxycycline for Lyme disease and Ehrlichia. However, my first three patients in 1987 did not respond to doxycycline, so I referred one to Boston for further consultation. They returned with a recommendation for amoxicillin, marking the first major shift in my treatment approach.

By 1990, I had started prescribing intravenous ceftriaxone (Rocephin), based on emerging reports of its effectiveness in chronic neurologic Lyme disease. This adjustment was influenced by reports from doctors Dr. Logigian, Kaplan and Steere, who documented treatment of chronic neurologic Lyme disease cases.

I added azithromycin (marked as Zithromax in the USA) and clarithromycin (marketed as Biaxin I the USA) into my practice, based on emerging reports of its effectiveness.

My practice changed again when Dr. Krause and colleagues reported the presence of Babesia, a parasite found in the same ticks that carry Lyme disease. At the time, treating Babesia was challenging, as the available regimen of clindamycin and quinine was difficult for patients to tolerate. The introduction of alternative treatments like atovaquone (Mepron) combined with azithromycin provided a more tolerable option, and I began prescribing these, particularly for patients who were not improving with other antibiotics.

Over the years, I’ve adapted my practice to include longer treatment durations and combination antibiotic therapies, especially in cases of chronic or persistent Lyme disease. I’ve also incorporated treatments for co-infections like Bartonella, which was initially thought to be associated with cat scratches but is now recognized as a potential tick-borne illness.

In addition to antibiotics, I’ve kept a close eye on new developments, such as the use of disulfiram (Antabuse) and double-dose dapsone, which has been explored by Dr. Horowitz for its potential benefits in treating chronic Lyme disease. While I have not yet adopted these treatments extensively, I remain open to new evidence-based approaches.

The concept of biofilms and persisters—bacteria that survive despite standard treatment—has also influenced my practice. The persister hypothesis borrowed from research on other persistent infections like tuberculosis, suggest that longer or more aggressive treatment may be necessary for some patients.

While antibiotics remain the cornerstone of my treatment approach, I also recognize the role of alternative therapies for some patients. I collaborate with alternative medicine practitioners when needed, ensuring that every patient receives a comprehensive and closely monitored treatment plan.

I continue to share my experiences and insights through writing and social media, fostering dialogue and contributing to the ongoing conversation about Lyme disease treatment.

My patient’s understanding of Lyme disease and its complexities was incomplete. Although he was familiar with nymphal ticks, he lacked awareness about adult ticks, which also play a crucial role in transmitting Lyme disease. He knew about the Bull’s-eye erythema migrans rash, a clear sign of early Lyme disease, but was unaware of the other types of rashes associated with chronic Lyme disease or different tick-borne infections.

He had heard of early Lyme disease but didn’t realize that chronic Lyme disease could develop if the infection isn’t treated adequately. While he knew about Post-Treatment Lyme Disease Syndrome (PTLDS), he didn’t understand that PTLDS might be related to a persistent infection rather than just residual symptoms after treatment.

He was aware of the recommendation to take a single dose of doxycycline to prevent an erythema migrans rash, but didn’t know that this approach isn’t proven to prevent other serious manifestations of Lyme disease, such as Lyme arthritis, Lyme carditis, or neurological Lyme disease. Although he understood the basics of the two-tier laboratory test for Lyme disease, he was not informed that Lyme disease often remains a clinical diagnosis due to the limitations of current testing.

Furthermore, he didn’t grasp the importance of identifying and managing co-infections. For example, he didn’t realize that Babesia, a common co-infection, can’t be treated with doxycycline alone and requires specific antiparasitic medications. He was also unaware of the potential for treatment failures and relapses, which complicate the management of Lyme disease and its co-infections.

Closing these gaps in public health information is essential for improving patient outcomes. Providing thorough education on these topics can empower patients to recognize symptoms, understand treatment options, and make informed decisions about their healthcare."

Preventing Chronic Lyme Disease: Insights from 37 Years of Experience

As a Lyme disease expert, preventing chronic illness associated with Lyme disease has been a primary focus of my practice for the past 37 years. Despite early intervention and comprehensive care, some patients still find themselves battling long-term, debilitating symptoms. This post outlines the strategies and lessons I’ve learned over the years in my mission to prevent chronic Lyme disease.

Understanding the Challenges of Lyme Disease

Lyme disease is a complex and often misunderstood condition. It can manifest in a variety of symptoms, which differ widely from patient to patient. These symptoms can range from mild to severe and can affect multiple body systems, making diagnosis and treatment particularly challenging. Even when Lyme disease is caught early and treated with antibiotics, some patients continue to suffer from persistent symptoms, leading to what is often referred to as chronic Lyme disease.

Early and Accurate Diagnosis: The First Line of Defense

One of the most critical steps in preventing chronic Lyme disease is ensuring an early and accurate diagnosis. Lyme disease is primarily a clinical diagnosis, meaning that it should be based on a patient’s symptoms and history rather than relying solely on test results. This is because the standard two-tiered testing approach can miss early or late-stage infections.

In my experience, comprehensive evaluations are essential, especially for patients with persistent symptoms. This includes not only testing for Lyme disease but also for co-infections like Babesia, Bartonella, and Ehrlichia, which are often transmitted by the same ticks that carry Lyme disease. These co-infections can complicate the clinical picture and require different treatment approaches.

Tailored Treatment Plans: No One-Size-Fits-All Approach

Not all patients respond to standard treatment protocols. While a typical course of antibiotics might be effective for some, others may require extended treatment or a combination of therapies to address the varying stages of the infection. Monitoring each patient’s progress is crucial, and being willing to adjust treatment plans based on their response is key to preventing chronic symptoms from developing.

Patient Education and Support: Empowering Patients for Better Outcomes

Educating patients about the potential for chronic symptoms, even after early treatment, is vital. Patients need to be aware that symptoms can recur and that it’s important to seek medical attention promptly if they do. This awareness can prevent the disease from progressing to a chronic state and can help patients manage their health more effectively.

Continuous support from healthcare providers is also essential. Chronic illness can be isolating, and having a supportive medical team can make a significant difference in a patient’s journey. This support can take many forms, including regular follow-up appointments, providing resources for symptom management, and offering encouragement and reassurance.

Holistic Care and Immune Support: Addressing the Whole Patient

Incorporating supportive therapies and focusing on overall immune system health can significantly improve outcomes for patients with Lyme disease. A holistic approach to care, which addresses both physical and mental health, can help mitigate the progression of chronic Lyme disease. This might include therapies such as physical therapy, nutritional support, and mental health counseling to address the wide-ranging impacts of the disease.

My patient took a "bury-your-head-in-the-sand" viewpoint toward Lyme disease, which did not help him. He had been ill for over two years, suffering from severe fatigue, brain fog, poor sleep, headaches, poor concentration, irritability, neck pain, chest pain, palpitations, stomach pains, and joint pain. He remained ill despite having been evaluated by a number of specialists to rule out other illnesses. He was reluctant to consider Lyme disease or tick-borne infection without a positive test.

His condition significantly affected his quality of life, and he experienced increasing frustration as each specialist he consulted was unable to identify the cause of his symptoms. Despite his worsening condition, he was hesitant to pursue a diagnosis of Lyme disease due to a lack of definitive test results and a belief that it was unlikely without a positive test or known tick bite.

His family, concerned about his deteriorating health, encouraged him to reconsider his reluctance and seek treatment for Lyme disease. After much persuasion, he agreed to undergo treatment. He was successfully treated with doxycycline followed by a combination of Zithromax and Malarone for Lyme disease with Babesia coinfection. The improvement in his symptoms was remarkable; his fatigue, brain fog, and other symptoms began to resolve.

He is now kicking himself for taking that "bury-your-head-in-the-sand" viewpoint and not considering Lyme disease earlier. His experience underscores the importance of considering Lyme disease as a potential diagnosis in patients with persistent, unexplained symptoms, even in the absence of a positive test or known tick bite. Early intervention and treatment can prevent prolonged suffering and lead to significant improvements in health.