Inside Lyme Podcast with Dr. Daniel Cameron – Détails, épisodes et analyse

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**

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.

Dr. Cameron feels that the best way to get to know Lyme disease is through reviewing actual cases. In this Inside Lyme Podcast episode, he will be discussing a 17-year-old young man who dies of Lyme Carditis. 

This case was first discussed in the journal Cardiovascular Pathologist written by Yoon and colleagues in 2015.

The autopsy showed evidence of Lyme disease. The spirochetes that cause Lyme disease were found in the young man’s fresh liver and myocardial tissue. There was also evidence of these spirochetes in the heart, lung, and brain tissues using immunohistochemistry staining and polymerase chain reaction (PCR) tests.

The cause of death was fatal Lyme carditis.

You can hear more about these cases through his blogs, social media, and YouTube. Sign up for our newsletter to keep up with our cases.

You can read the full text of this podcast at: 

https://danielcameronmd.com/lyme-disease-podcast-17-year-old-young-man-dies-from-lyme-carditis/

How to Connect with Dr. Daniel Cameron:

• Check out his website: https://www.DanielCameronMD.com/
• Call his office: 914-666-4665
• Email him: DCameron@DanielCameronMD.com 
• Send him a request:  https://danielcameronmd.com/contact-daniel-cameron-md/
• Like him on Instagram: https://www.instagram.com/drdanielcameron/
• Join his Facebook group: https://www.facebook.com/danielcameronmd/
• Follow him on Twitter: https://twitter.com/DrDanielCameron
• Sign up for his newsletter: https://www.DanielCameronMD.com/
• Subscribe and ring the bell: https://www.youtube.com/user/danielcameronmd/ 
• Leave a review on iTunes or wherever else you get your podcasts.

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.

Dr. Cameron feels that the best way to get to know Lyme disease is through reviewing actual cases. In this Inside Lyme Podcast episode, he will be discussing three premature babies who contract Babesia from blood transfusions.

These cases were originally described in the Journal of the Pediatric Infectious Disease Society, written by Saetre and colleagues in 2017.

Three premature babies contracted Babesia from a single blood donor. The diagnosis and treatment are discussed.   

You can hear more about these cases through his blogs, social media, and YouTube. Sign up for our newsletter to keep up with our cases.

You can read the full text of this podcast at: 

 https://danielcameronmd.com/lyme-disease-podcast-babies-contract-babesia-blood-transfusions/

How to Connect with Dr. Daniel Cameron:

• Check out his website: https://www.DanielCameronMD.com/
• Call his office: 914-666-4665
• Email him: DCameron@DanielCameronMD.com 
• Send him a request:  https://danielcameronmd.com/contact-daniel-cameron-md/
• Like him on Instagram: https://www.instagram.com/drdanielcameron/
• Join his Facebook group: https://www.facebook.com/danielcameronmd/
• Follow him on Twitter: https://twitter.com/DrDanielCameron
• Sign up for his newsletter: https://www.DanielCameronMD.com/
• Subscribe and ring the bell: https://www.youtube.com/user/danielcameronmd/ 
• Leave a review on iTunes or wherever else you get your podcasts.

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.

Dr. Cameron feels that the best way to get to know Lyme disease is through reviewing actual cases. In this Inside Lyme Podcast episode, he will be discussing two children who contracted Babesia from their mothers.

These cases were originally described in the Journal of the Pediatric Infectious Disease Society, written by Saetre and colleagues in 2017.

Both mothers were treated for Lyme disease during their pregnancy. Both babies were apparently born healthy and sent home. One of the babies had a positive PCR test for Babesia before going home but was not treated.  Both babies returned to the hospital with Babesia. Both required prolonged hospitalization and treatment.

You can hear more about these cases through his blogs, social media, and YouTube. Sign up for our newsletter to keep up with our cases.

You can read the full text of this podcast at:

https://danielcameronmd.com/lyme-disease-podcast-children-contract-babesia-from-mothers/

How to Connect with Dr. Daniel Cameron:

• Check out his website: https://www.DanielCameronMD.com/
• Call his office: 914-666-4665
• Email him: DCameron@DanielCameronMD.com 
• Send him a request:  https://danielcameronmd.com/contact-daniel-cameron-md/
• Like him on Instagram: https://www.instagram.com/drdanielcameron/
• Join his Facebook group: https://www.facebook.com/danielcameronmd/
• Follow him on Twitter: https://twitter.com/DrDanielCameron
• Sign up for his newsletter: https://www.DanielCameronMD.com/
• Subscribe and ring the bell: https://www.youtube.com/user/danielcameronmd/ 
• Leave a review on iTunes or wherever else you get your podcasts.

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.

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.

What is a common-sense approach to testing for Tick-borne infection. I focus on the most common infections that I see a Lyme disease infection. I order a Lyme disease test as well as test for infections like Ehrlichia, Anaplasmosis, and Babesia. I don’t typically order Mycoplasma or Chlamydia unless there is evidence that there’s active infection. 

I order an ELISA test, which is also called Lyme titer.  I also order a western blot and IgG and IgM test. These are test where you need two out of three bands IgM bands. You need five out of 10 IgG bands to be called positive by the CDC criteria. These are bands that were identified and in 1994 at a consensus meeting in Dearborn Michigan.  These markers are protein that have been identified in Lyme disease infections.  For example, the 41 kDa band represents a protein contained in the tail of a spirochete.

I have not been ordering a C6 peptide or VlsE protein tests for Lyme disease as they are not as reliable as I would like.  None of these tests for Lyme disease are all that sensitive in my experience.  I have often had to use clinical judgement to diagnose and treat Lyme disease.

I also order IgG and IgM tests for co-infections with Babesia, Bartonella, Anaplasmosis, and Ehrlichia. I have not found PCR tests for these co-infections as helpful as I would like.

I have found a blood smear for Babesia not helpful if a patient has been sick more than 2 weeks.  

Some doctors have assumed Bartonella tests have been positive due to exposure to fecal matter from mites living on cats. I can’t be sure the cause of positive tests for Bartonella in patients with Lyme disease. 

I don’t typically ordered labs for infections such as tularemia or Brucellosis despite concerns by some of my colleagues. I have found treatment for Lyme disease would take care of these infections if they were present.

I typically do not sent bloods to a specialty lab if someone’s on a budget. I also do not send bloods to these labs if I am going to treat clinically.  

I also order extensive testing to rule other illnesses like a CBC, comprehensive metabolic profile, ANA, RA, thyroid, sed rate, vitamin B12 and D.    I may order a free T4 and free T3 if I am considering a thyroid condition.  I have found ANA frustrating as most of the ANA tests are false positive. A positive dsDNA supports the diagnosis of lupus. My patients don’t typically have three other conditions that would support the diagnosis of Lupus. I refer my patients to see a rheumatologist if there is a need to rule out lupus.

I typical order blood test for a tick-borne illness four weeks or 4 to 6 weeks after onset of their illness to increase the chances that I might get a positive test.  I have had to use clinical judgement to treat a tick-borne infection if my patient is sick for less than 4 weeks or if I suspect a false negative test,

Welcome! Today, we'll explore the top ten symptoms of Lyme disease that I've encountered in my practice, highlighting the case of a patient who experienced them.

Case Study: A 34-Year-Old Man's Journey

He was a 34-year-old man who had been chronically ill for 14 months. He had seen his primary care physician and various specialists, but multiple conditions were ruled out. Despite some improvement with symptomatic treatments, he couldn't work and struggled to care for his family. He didn’t realize his symptoms were consistent with Lyme disease and a tick-borne co-infection.

Top Ten Lyme Disease Symptoms

Here are the top ten Lyme disease symptoms I've seen in my practice:

1. Exhaustion: Severe fatigue that doesn't improve with rest.

2. Poor Sleep: Trouble falling asleep, staying asleep, or feeling rested.

3. Impaired Concentration: Difficulty focusing and memory problems.

4. Headaches: Persistent and severe headaches.

5. Mood Disturbance: Irritability, anxiety, depression, and mood swings.

6. Neck Pain: Stiffness and pain in the neck.

7. Postural Orthostatic Tachycardia Syndrome (POTS): Lightheadedness, rapid heartbeat upon standing.

8. Nausea and Constipation: Gastrointestinal issues.

9. Sensitivity to Light, Sound, Heat, and Cold: Heightened sensitivity to environmental stimuli.

10. Joint Pain and Numbness: Migratory joint pain and tingling or numbness in the hands and feet.

Additional Symptoms

He also experienced:

- Distorted vision and pain behind his eyes

- Chest and back pain

- Ringing in his ears (tinnitus)

- Night sweats and air hunger

- Testicle pain

He thought his head pressure was related to sinusitis, but ENT evaluations and a CT scan were negative. He attributed his exhaustion to chronic fatigue syndrome and poor concentration to fatigue and poor sleep. He didn’t connect his sensitivity to light, sound, heat, and cold to his illness.

He couldn't understand the cause of his irritability, sadness, anxiety, and despair. He didn’t know that his lightheadedness, nausea, and constipation could be linked to an autonomic immune response to Lyme disease. He also didn't realize that the burning in his hands and feet and migratory joint pain were related to his illness.

Treatment and Recovery

His chronic illness resolved with a combination of Malarone and Zithromax after failing a course of doxycycline. This case highlights the importance of recognizing the diverse and often unexpected symptoms of Lyme disease.

Conclusion

Understanding these symptoms can help in the early diagnosis and effective treatment of Lyme disease. If you or someone you know has unexplained symptoms, consider consulting a Lyme-literate doctor. Thank you for watching, and stay tuned for more insights on Lyme disease.