Inside Lyme Podcast with Dr. Daniel Cameron

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. 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.

In this episode, Dr. Cameron will be discussing the case of a 64-year-old woman with central nervous system involvement of the brain. The case was first described by Mullholand and colleagues in the British Medical Journal in a paper entitled “Central nervous system involvement of anaplasmosis.” 1 A 64-year-old woman was hospitalized with a 24-hour history of confusion and lethargy. The following morning, her lethargy had worsened and she developed subjective fever, mild headache, nausea, vomiting and increased confusion, according to the authors.

Dr. Daniel Cameron. In this episode, Dr. Cameron will be discussing the case of a 63-year-old woman who was diagnosed with Southern Tick-Associated Rash Illness (STARI). The authors discuss the differences and similarities of STARI and Lyme disease: In their article “Southern Tick-Associated Rash Illness: Florida’s Lyme Disease” Abdelmaseih and colleagues describe the woman’s case, highlighting the differences between STARI and Lyme disease.¹ You can hear more about these cases through his blogs, social media, and YouTube. Sign up for our newsletter to keep up with these cases. How to Connect with Dr. Daniel Cameron: https://www.DanielCameronMD.com/DCameron@DanielCameronMD.comhttps://danielcameronmd.com/contact-daniel-cameron-md/https://www.instagram.com/drdanielcameron/https://www.facebook.com/danielcameronmd/https://twitter.com/DrDanielCameronhttps://www.DanielCameronMD.com/https://www.youtube.com/user/danielcameronmd/We, of course, hope you’ll join the conversation, connect with us and other readers, ask questions, and share your insights. Dr. Cameron is a Lyme disease expert and the author "Inside Lyme: An expert's guide to the science of Lyme disease." He has been treating adolescents and adults for more than 30 years. Please remember that the advice given is general and not intended as specific advice as to any particular patient. If you require specific advice, then please seek that advice from an experienced professional.