Archive for the ‘Lyme’ Category

Lyme Disease: Acute and Chronic-Defined & “It Ain’t Just One Thing”

https://www.ilads.org/ilads-conference/ilads-annual-conference-2020/abstract/#specific-pcr

Lyme Disease: Acute and Chronic-Defined

Samuel M Shor, MD

Objective: Chronic Lyme disease has been a poorly defined term and often dismissed as a fictitious entity. In this paper, the International Lyme and Associated Diseases Society (ILADS) provides its evidence-based definition of chronic Lyme disease.

Definition: ILADS defines chronic Lyme disease (CLD) as a multisystem illness with a wide range of symptoms and/or signs that are either continuously or intermittently present for a minimum of six months. The illness is the result of an active and ongoing infection by any of several pathogenic members of the Borrelia burgdorferi sensu lato complex (Bbsl). The infection has variable latency periods and signs and symptoms may wax, wane and migrate. CLD has two subcategories,

  • CLD, untreated (CLD-U)
  • CLD, previously treated (CLD-PT)

The latter requires that CLD manifestations persist or recur following treatment and are present continuously or in a relapsing/remitting pattern for a duration of six months or more.

Methods: Systematic review of over 250 peer reviewed papers in the international literature to characterize the clinical spectrum of CLD-U and CLD-PT.

Conclusion: This evidence-based definition of chronic Lyme disease clarifies the term’s meaning and the literature review validates that chronic and ongoing Bbsl infections can result in chronic disease.

Use of this CLD definition will promote a better understanding of the infection and facilitate future research of this infection.

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**Comment**

Words matter.

This, right here, is a main difference between what mainstream medicine ascribes to and what a Lyme literate doctor ascribes to.  The difference is life-changing to say the least.  Those in the former camp will treat patients with the woefully inadequate 21 days of doxycycline while the latter camp realizes this illness can wax, wane, and linger – and this isn’t even taking into account the many coinfections that can also wax, wane, and linger.  

If patients have numerous persisting infections they have more severe cases for a longer duration of time, requiring numerous medications for far longer than the unscientific CDC Lyme guidelines.

For more:  https://madisonarealymesupportgroup.com/2020/11/25/what-makes-a-doctor-lyme-literate/

https://madisonarealymesupportgroup.com/category/lyme-disease-treatment/

http://  Approx. 42 Min.

Sept. 30, 2020

It Ain’t Just One Thing

David Kaufman, MD; Ilene Ruhoy, MD, PhD

Chronic Lyme Disease (CLD) is a complex chronic illness. Controversy exists regarding whether it represents persistent Lyme infection or a post-infectious, possibly autoimmune syndrome, or a combination of both. This is an important topic as a greater understanding of CLD can help guide treatment options for these patients who suffer sometimes for decades and are often turned away from healthcare providers. Effective treatment has been notoriously difficult. Importantly, patients with CLD generally meet all the criteria for a diagnosis of ME/CFS. Interestingly as discussed below, these same patients very often present with similar signs, symptoms, and diagnoses that are seen in a large majority of ME/CFS patients regardless of any history of CLD.

We will discuss the diagnostic concept of a Septad which includes:

  • Autoimmune disease
  • Mast Cell Activation Syndrome
  • Dysautonomia including small and large fiber neuropathy
  • Dysmotility/Dysbiosis/SIBO
  • hypermobility Ehler Danlos Syndrome (hEDS)
  • Cranial Cervical Instability (CCI)/Tethered Cord (TC)
  • Infection including especially tick borne diseases, viral reactivation, and mycoplasma

The Septad concept provides a guide for both physician and patient regarding both the work up and the treatment plans. The identification of these particular entities can be made with objective data and can assist physicians in implementing management options. This presentation will briefly discuss each of these disorders including symptoms, evaluation, and possible treatment suggestions.

Category:

Lyme, Mast Cell Activation Syndrome (MCAS), research

4 Distinct Post-Treatment Lyme Disease Syndromes?

https://danielcameronmd.com/4-distinct-post-treatment-lyme-disease-syndromes/

4 DISTINCT POST-TREATMENT LYME DISEASE SYNDROMES?

Man holding head, looking tired from post treatment lyme disease

In a recent editorial, Dr. Allen Steere describes the clinical features and proposed mechanisms triggering what he believes are 4 distinct post-treatment Lyme disease syndromes (PTLDS) in patients who fail antibiotic treatment for Lyme disease. [1]

By

Individuals who suffer from persistent symptoms may be diagnosed with post-treatment Lyme disease or ‘chronic Lyme disease.’  Studies estimate that between 34% and 62% of patients continue to have ongoing, chronic symptoms even after standard antibiotic therapy. Many remain ill for months to years. In fact, according to one study, 34% of a population-based, retrospective cohort were still ill an average of 6.2 years after antibiotic treatment.

Additionally, four clinical trials, sponsored by the National Institutes of Health (NIH), demonstrated the potential seriousness of Lyme disease. According to the findings, the quality of life for chronically ill patients “was equivalent to that of patients with congestive heart failure; pain levels were similar to those of post-surgical patients and fatigue was on par with that seen in multiple sclerosis.”

In his editorial, “Post-treatment Lyme disease syndromes: distinct pathogenesis caused by maladaptive host responses,” Steere concedes that patients can remain seriously ill. “These patients may have severe pain around joints (tender points), headache, brain fog, sleep disorder, and incapacitating fatigue, which have a major impact on the quality of life.”

“Physicians are often in a quandary regarding whether these patients still have active infection or postinfectious phenomena,” he writes.

Unfortunately, Steere dismisses the hypothesis that a persistent and active infection could be causing ongoing illness in patients with ‘chronic Lyme disease’ or post-treatment Lyme disease syndrome, as he claims, there is a “current lack of evidence of persistent infection or antibiotic efficacy in human patients with PTLDS.” (A statement which I dispute.)

Instead, he has developed and proposes that patients suffer from various post-infectious syndromes, which include:

Post-infectious Lyme arthritis

“Massive inflammatory, synovial proliferation usually affecting a knee, emerging from Lyme arthritis.”

  • Pathogenesis: Excessive pro-inflammatory immune response with high IFN-γ levels persistent in the post-infectious period, blocking appropriate wound repair processes.

Post-treatment Lyme disease syndrome

“Pain, neurocognitive, and fatigue symptoms emerging after any LD [Lyme disease] manifestation.”

Autoimmune joint disease

“Rheumatoid arthritis, psoriatic arthritis, or peripheral spondyloarthropathy emerging after any LD [Lyme disease] manifestation.”

  • Pathogenesis: Adjuvant effect of infection activating latent autoimmune disease.

Autoimmune neurologic disease

“Chronic idiopathic demyelinating polyneuropathy emerging from Lyme radiculoneuropathy.”

  • Pathogenesis: Unknown.

Steere points out, that individuals with systemic autoimmune diseases following Lyme disease may benefit from immunosuppressive or anti-inflammatory therapy.

He concludes, “disabling posttreatment syndromes may still develop, which appear to result primarily from disadvantageous or maladaptive host responses to the infection that persist after spirochetal killing with antibiotics.”

Editor’s note: I do not agree with Dr. Steere’s position. And for transparency purposes, I’m an author of the International Lyme and Associated Diseases Society (ILADS) guidelines, which does not dismiss the persistent infection hypothesis but supports ongoing antimicrobial treatment until Lyme disease symptoms resolve.
Related Articles:

Case report: Persistent pain and fatigue following treatment for Lyme disease

Borrelia spirochete are masters at evading the immune system

Will late stage Lyme disease treatment include azlocillin?

References:
  1. Steere AC. Posttreatment Lyme disease syndromes: distinct pathogenesis caused by maladaptive host responses. J Clin Invest. 2020;130(5):2148-2151.

______________________

**Comment**

This would almost be humorous if it wasn’t so serious.  

Having just read Polly Murray’s “The Widing Circle,” and revisiting the beginning of it all from the woman who contacted health authorities to report on a mysterious illness afflicting her entire household and a majority of her neighbors, I realize that very little has changed.

40 years ago, Murray was frustrated with Steere’s stubborn refusal to acknowledge the persistent infection that seemed to affect so many patients.

I was also shocked anew at these authorities who often preferred sitting back to observe suffering patients – rather than treat them.  Nearly all responded that were able to receive continuing treatment.  I wrote about our experience here:  https://madisonarealymesupportgroup.com/2020/11/06/the-proof-is-in-the-pudding-my-letter-to-the-tbdwg/

I hesitate to think where we would be now without this life-saving treatment that took over 5 years.

For more:  

I highly recommend bypassing mainstream medicine completely and heading directly to a Lyme literate doctor:  https://madisonarealymesupportgroup.com/2020/11/25/what-makes-a-doctor-lyme-literate/

The Lyme War continues unabated.

Category:

Lyme, research, Treatment

Three Deaths Associated With Lyme Carditis

https://danielcameronmd.com/podcast-3-deaths-associated-with-lyme-carditis/

THREE DEATHS ASSOCIATED WITH LYME CARDITIS

Hello, and welcome to another Inside Lyme Podcast. I am your host Dr. Daniel Cameron. In this podcast, I will be discussing three deaths associated with Lyme carditis.

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Podcasts here:  https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5idXp6c3Byb3V0LmNvbS83NzIxNjAucnNz  Lyme Carditis podcast is approx. 12 min.

I first read about these cases in the Morbidity and Mortality Weekly Report (MMWR) published by the Centers for Disease Control and Prevention (CDC).

The authors described three deaths associated with Lyme disease. All three were diagnosed with Lyme carditis on autopsy.

Patient 1

“In November 2012, a Massachusetts resident was found unresponsive in an automobile after it veered off the road,” wrote the authors.  He had no cardiac activity by the emergency responders. He was pronounced dead at a nearby hospital.

We know very little about the patient. “Interviews with next-of-kin revealed that the patient had described a nonspecific illness with malaise and muscle and joint pain during the 2 weeks preceding death,” wrote the authors. The authors added, “The patient lived alone with a dog that was reported to have ticks frequently.”

He was diagnosed with Lyme carditis on autopsy.

Patient 2

“In July 2013, a New York state resident experienced chest pain and collapsed at home,” wrote the authors. The patient was pronounced dead after failing cardiopulmonary resuscitation.  The patient had a history of Wolff-Parkinson-White syndrome (WPW).  In WPW is condition characterized by abnormal electrical pathways that can causes a rapid heartbeat.  There was no history of a tick bite or a rash.

The patient was also diagnosed with Lyme carditis on autopsy.

Patient 3

“In July 2013, a Connecticut resident collapsed while visiting New Hampshire and was pronounced dead at a local hospital,” wrote the authors.

“The patient had complained of episodic shortness of breath and anxiety during the 7–10 days before death,” wrote the authors.  He was prescribed the anti-anxiety medication clonazepam the day prior to death.  There was no EKG performed.

The patient was diagnosed with Lyme carditis.

All three of these individuals tested positive for Lyme disease on autopsy.

What questions do these cases raise?

  1. What is Lyme carditis?
  2. How often does Lyme carditis occur?
  3. How is Lyme disease diagnosed?
  4. Can Lyme carditis be prevented?
  5. How often are autopsies performed on patients with sudden death?
  6. Why is the second patient’s history of Wolff-Parkinson-White syndrome (WPW) important?
  7. How reliable are tests for Lyme disease in patients with sudden death?
  8. Could the third patient still be alive if he had an EKG 7 to 10 days earlier when he presented with episodic shortness of breath and anxiety?
  9. What is the significance of the dog in the first case?
  10. What would you recommend?

Thanks for listening to another Inside Lyme Podcast. You can read more about these cases in my show notes and on my website @DanielCameronMD.com. As always, it is your likes, comments, reviews, and shares that help spread the word about Lyme disease. Until next time on Inside Lyme.

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.

Inside Lyme Podcast Series

This Inside Lyme case series will be discussed on my Facebook and made available on podcast and YouTube.  As always, it is your likes, comments, and shares that help spread the word about this series and our work. If you can, please leave a review on iTunes or wherever else you get your podcasts.

References:
  1. Centers for Disease Control and Prevention (CDC). Three sudden cardiac deaths associated with Lyme carditis – United States, November 2012-July 2013. MMWR Morb Mortal Wkly Rep. 2013 Dec 13;62(49):993-6.

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For more:  

Category:

Heart Issues, Lyme, research

Management of Tick Bites & Lyme Disease During Pregnancy

https://pubmed.ncbi.nlm.nih.gov/32414479/

Practice Guideline
J Obstet Gynaecol Can

. 2020 May;42(5):644-653.

doi: 10.1016/j.jogc.2020.01.001.

Committee Opinion No. 399: Management of Tick Bites and Lyme Disease During Pregnancy

Graeme N Smith 1, Kieran M Moore 1, Todd F Hatchette 2, Jennifer Nicholson 3, William Bowie 4, Joanne M Langley 2

Abstract

Objective: Lyme disease is an emerging infection in Canada caused by the bacterium belonging to the Borrelia burgdorferi sensu lato species complex, which is transmitted via the bite of an infected blacklegged tick. Populations of blacklegged ticks continue to expand and are now established in different regions in Canada. It usually takes more than 24 hours of tick attachment to transfer B. burgdorferi to a human. The diagnosis of early localized Lyme disease is made by clinical assessment, as laboratory tests are not reliable at this stage. Most patients with early localized Lyme disease will present with a skin lesion (i.e., erythema migrans) expanding from the tick bite site and/or non-specific “influenza-like” symptoms (e.g., arthralgia, myalgia, and fever). Signs and symptoms may occur from between 3 and 30 days following the tick bite. The care of pregnant patients with a tick bite or suspected Lyme disease should be managed similarly to non-pregnant adults, including the consideration of antibiotics for prophylaxis and treatment. The primary objective of this committee opinion is to inform practitioners about Lyme disease and provide an approach to managing the care of pregnant women who may have been infected via a blacklegged tick bite.

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**Comment**

Payment is required to see the full article.

A few points:

  • I’m glad they acknowledge that ticks are expanding everywhere – and that goes for ALL ticks.
  • In my opinion, as these ticks expand, biting animals/people outside of their typical range, more transmission studies need to be done to determine if they are also picking up new pathogens not common to them previously.  This would help explain the expansion of pathogens as well as ticks. Unfortunately, researchers are content with 35+ year old studies with an inch of dust on them.
  • It DOES NOT take 24 hours to become infected and a minimum time has never been established:  https://madisonarealymesupportgroup.com/2017/04/14/transmission-time-for-lymemsids-infection/
  • I’m glad they acknowledge that Lyme/MSIDS is a clinical assessment.  Unfortunately, due to top down education from the CDC/IDSA, doctors are woefully unprepared to make this assessment.  There needs to be an overhaul on this aspect of medical training and they should listen to Lyme literate doctors with decades of experience rather than vilify them:  https://madisonarealymesupportgroup.com/2020/11/25/what-makes-a-doctor-lyme-literate/
  • Most patients will NOT present with a skin lesion:  https://madisonarealymesupportgroup.com/2019/02/22/why-mainstream-lyme-msids-research-remains-in-the-dark-ages/
  • I’m extremely grateful they recommend considering prophylactic treatment.  Unfortunately, again due to top down education from the CDC/IDSA, doctors are scared to death to use antibiotics for this, further revealing the need for education on the severe nature of this disease(s) and the potential for congenital transmission affecting the life of the newborn forever. This detail makes it clear any risk is worth the benefit, but only if you are knowledgable about the severity of the disease(s).
  • No mention of coinfections is given, and this is another important issue mainstream medicine is clueless about. Patients that are coinfected are sicker for longer and require far more than the typical mono treatment.

For more:  

Category:

Lyme, Pregnancy, research, Treatment

Diagnosing and Treating Lyme: Podcast

https://canlyme.com/2020/09/02/new-podcast-dr-ralph-hawkins-shares-his-medical-expertise-and-hands-on-experience-diagnosing-and-treating-lyme-disease/

New Podcast: Dr. Ralph Hawkins shares his medical expertise and hands on experience diagnosing and treating Lyme disease

https://www.lookingatlyme.ca/2020/09/dr-ralph-hawkins-explains-the-challenges-of-detecting-lyme-disease-through-testing/  Podcast here

September 1st, 2020

In this episode of Looking at Lyme, Sarah speaks with Internal Medicine Specialist and Canadian Lyme expert, Dr. Ralph Hawkins. Dr. Hawkins has been treating Lyme patients in Canada for many years, gaining a wealth of knowledge about the disease. He recounts his introduction to the shortcomings of Lyme disease testing in Canada while treating a patient with a history of multiple previous tick bites, many common symptoms of Lyme disease, but a negative Canadian Lyme test. Dr. Hawkins had the patient’s blood tested at a University Lab in New York, revealing test band patterns consistent with Lyme disease. He referred this patient to Infectious Diseases colleagues for treatment, but quickly found out that the diagnosis of late stage Lyme disease is not generally recognized by the Infectious Diseases community. He was advised to not only drop this case, but to avoid other similar cases. The recommendation to avoid such patients sparked Dr. Hawkins’ curiosity and interest, inspiring him to dive deeply into the research and history of Lyme disease.

Dr. Hawkins walks us through the current testing protocols for Lyme disease in Canada, explaining why some patients with Lyme disease receive a negative test result. He explains the difference between current testing in Canada and tests done in other parts of the world, highlighting a test done in Germany that he often relies on when diagnosing patients, and touching on the approval process for such tests by Health Canada. Without better testing, Canadians with Lyme disease continue to fall through the cracks of the healthcare system. Dr. Hawkins refers to a recent analysis of Lyme diagnosis in Canada in which researchers speculate that in some areas, two thirds of Lyme cases go unreported. With this in mind he points out that, in light of the severity of untreated Lyme disease, a trial period of treatment for Lyme disease would be valid for certain patients with negative Canadian serology. Thank you Dr. Hawkins for walking with us down the bumpy road of Lyme disease testing and treatment in Canada!

Resources and notes

For more:  

Category:

Activism, Lyme, Ticks, Treatment