Inside Lyme Podcast with Dr. Daniel Cameron

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.

Unfortunately, there simply isn’t a one-size-fits-all treatment protocol for patients infected with Lyme disease and/or co-infections. This is why it's critical for physicians treating Lyme disease to invest time with patients, thoroughly understand their medical history, and closely monitor symptoms and treatment response.

With that in mind, there are currently two different treatment approaches for Lyme disease. The Infectious Disease Society of America (IDSA) and the International Lyme and Associated Diseases Society (ILADS) have each published their own set of evidence-based treatment guidelines. IDSA guidelines recommend a short course of antibiotics, typically 14 to 30 days.

IDSA argues that the Borrelia burgdorferi bacteria do not persist in a patient beyond this timeframe and that lingering symptoms are the result of an ongoing immune response and not an active infection. It also cites scientific evidence claiming treatments beyond 30 days are ineffective, unnecessary, and even dangerous. IDSA physicians will stop treatment after 30 days, even if symptoms remain. They advise an additional 30 days of treatment recommended for patients with Lyme arthritis. 

On the contrary, ILADS offers its own scientific data to show that a additional treatment with antibiotics is required to eradicate the bacteria. ILADS recognizes that a month of treatment may be sufficient for patients in the acute stage of Lyme disease, but in cases where the spirochete has disseminated and the disease has advanced, a 30-day treatment regimen is inadequate.

ILADS guidelines recommend additional antibiotics until a patient's symptoms have been resolved. Treating Lyme disease in its advanced stage can be complicated based on the complexity of the organism itself, differences in each patient's immune system, the length of time infected, and the possible presence of other co-infections transmitted by the same tick.

There are several choices in treating Lyme disease, which include oral, intravenous, and intramuscular antibiotic options. Other options may include sequential antibiotic therapy, higher doses of antibiotics, taking antibiotics for a longer period of time, a combination of antibiotics, retreatment, as well as diagnosing and treating co-infections. Some specific antibiotics used in treating Lyme disease are doxycycline, minocycline, amoxicillin, cefuroxime, azithromycin, and clarithromycin.

Other tests include measures of blood counts, chemistries, liver function tests, ANA, dsDNA, RF, TSH, free T3, free T4, ESR may be helpful at ruling out other conditions.  Referral to specialist might help to rule out other conditions. 

I find shared decision with my patient helpful. I also find follow-up helpful to assess my patient's response to treatment to rule out other conditions.

There are additional protocols that may also aid in treating Lyme disease, such as avoiding alcohol, simple and processed sugars, exercising as tolerated, counseling for a Jarisch-Herxheimer reaction, managing symptoms, monitoring and reducing the risk of an adverse event, and reducing stress. However, there is a chance of side effects such as Clostridium difficile-associated diarrhea (CDAD). Probiotic have been prescribed with the hope of reducing the risk of developing CDAD.

My Lyme disease patient was afraid of seeking treatment for Lyme disease. She was not alone. She is not alone. I will explore the stigma surrounding Lyme disease, the impact on patients, and treatments. One of the main hurdles is the fear of the diagnosis itself.

Lyme disease manifests in various stages with symptoms ranging from mild to severe and can become a chronic condition if not diagnosed and treated promptly. If not diagnosed and treated promptly. 

Patients are aware that being diagnosed with Lyme disease can lead to skepticism from both the public and healthcare providers. This skepticism can result in delayed treatment and inadequate care, exacerbating the patient's suffering. Some articles and reports have been dismissive of compelling evidence that demonstrates Lyme disease as a complex chronic condition. This bias contributes to the harmful stereotype of chronic Lyme sufferers as hypochondriacs, individuals who are excessively preoccupied with their health without a legitimate medical reason. Such portrayals undermine the seriousness of this disease and invalidate the experience of those suffering from it. The portrayal of Lyme disease sufferers as hypochondriacs leads to significant

stigma within healthcare settings. Healthcare providers may be influenced by this bias, leading them to dismiss patient’s symptoms or attribute them to psychological causes rather than exploring a potential Lyme disease diagnosis. Patients may feel isolated, misunderstood, and reluctant to seek further medical help due to previous negative experiences.

The development and implementation of new treatments for Lyme disease often face harsher criticism compared to treatments for other chronic diseases. This criticism stems from a combination of skepticism about the chronic nature of Lyme disease and concerns over the long term use of antibiotics. Despite evidence supporting the efficacy of extended antibiotic therapy, in some chronic Lyme cases, these treatments are frequently scrutinized and dismissed. This hesitancy to embrace new treatments limits options for patients and hinders progress in managing the disease effectively. A significant aspect of the controversy surrounding Lyme disease treatment is the debate over antibiotic therapy. Recent reporting

Critics highlight potential side effects and the risk of antibiotic resistance, suggesting that patients should endure their symptoms rather than pursue long term antibiotic treatment. This perspective fails to acknowledge the debilitating nature of chronic Lyme disease and the potential benefits that some patients experience from prolonged antibiotic therapy.

The dismissal of chronic Lyme disease and a reluctance to support extended antibiotic treatment has profound consequences for patients suffering from chronic symptoms such as fatigue, joint pain, neurologic issues, and cognitive impairment. Patients are left with limited options.

The suggestion that patients should endure their symptoms without adequate treatment disregards the impact of this disease on their quality of life. Addressing the stigma and challenges in Lyme disease treatment requires a multifaceted approach. It is crucial to acknowledge Lyme disease as a complex chronic condition and to validate the experience of those suffering from it. 

By fostering a more compassionate and evidence-based perspective, we can improve the diagnosis, treatment, and overall care for Lyme disease patients. Healthcare providers, media, and policy makers must work together to reduce stigma, support research into new treatments, and ensure the patients receive the comprehensive care they need.

Welcome! Today, we're discussing the top causes of treatment delays for Lyme disease that I've encountered in my practice."

Case Study: An 18-Month Struggle

One of my patients was ill for 18 months. She had a tick bite and an atypical rash. Her ELISA titer was positive for Lyme disease, but she had only two IgG western blot bands. Despite multiple evaluations, Lyme disease was considered but dismissed after a negative test. She presented with Chronic Neurologic Lyme and Postural Orthostatic Tachycardia Syndrome (POTS) and required extensive treatment due to these delays. Fortunately, she improved after treatment, but the delay made her recovery more challenging.

Top Causes of Treatment Delays

Here are the top causes of treatment delays I see in my practice:

1.  Absence of a Tick Bite: Many patients don't recall being bitten by a tick, leading to delays in considering Lyme disease.

2.  Absence of a Rash: Not all Lyme disease patients develop a rash, which can cause misdiagnosis.

3.  Atypical Rash: Only one in four Lyme disease cases present with the classic bull’s eye pattern.

4.  Equivocal or Negative Tests for Lyme: Inconsistent or negative test results can lead to delays in diagnosis.

5.  Equivocal or Negative Tests for Co-Infections: Co-infections like Babesia may not be detected, complicating diagnosis.

6.  Dismissal as Another Illness: Symptoms may be mistaken for chronic fatigue, fibromyalgia, gastroparesis, or other conditions.

7.  Inadequate Public Health Information: Lack of awareness and information can lead to delays in seeking appropriate care.

8.  Poor Understanding of the Signs and Symptoms of Lyme Disease: Misinterpretation of symptoms by both patients and healthcare providers.

9.  Stigma Associated with the Diagnosis of Lyme Disease: Fear of stigma can prevent patients from seeking a diagnosis.

10.  Difficulties Finding a Doctor Who Will Treat Lyme Disease: Limited access to Lyme-literate doctors can delay treatment.

11.  Reliance on Symptomatic Treatment or Alternative Treatments: Focusing on symptomatic relief without considering Lyme disease.

12.  Reluctance of Professionals to Consider Lyme Disease: Some healthcare providers are hesitant to diagnose Lyme disease.

Addressing the Challenges

Addressing these challenges requires raising awareness, improving diagnostic methods, and ensuring better access to doctors experienced in treating Lyme disease. Patients and healthcare providers need to be informed about the varied presentations and complexities of Lyme disease.

Conclusion

Understanding the causes of treatment delays helps us improve the timely diagnosis and treatment of Lyme disease. If you or someone you know is experiencing unexplained symptoms, consider consulting a doctor experienced in treating Lyme disease. Thank you for watching, and stay tuned for more insights on Lyme disease.