Archive for the ‘Uncategorized’ Category

A Focus on Lyme Disease & The Cascade of Inflammation Podcast

https://livingwithlyme.us/episode-100-a-focus-on-lyme-disease-and-the-cascade-of-inflammation/

Cindy Kennedy, FNP, is joined by Dr. Jaquel Patterson, who discusses why treating Lyme Disease, a multi-layered illness, requires a multi-system approach to treatment. Dr. Patterson has 11 years of clinical experience treating Lyme and other tick-borne infections.Dr. Patterson is a nationally recognized naturopathic physician and Medical Director of Fairfield Family Health in Fairfield, Conn. She has over 11 years of clinical experience with a focus on Lyme disease, autoimmune conditions, allergies, anxiety and depression and childhood developmental disorders.

She is an active member of ILADS, AAEM, MAPS and CNPA. She has served in many taskforces throughout the state on areas such as Person-Centered Medical Home and Integrative Medicine. She is the current President for the American Association of Naturopathic Physicians and serves on the board of the Connecticut Association of Naturopathic Physicians.

Dr. Patterson has presented at large conferences like Annual World Congress Anti-Aging Medicine (A4M) Venetian, and has appeared multiple times on television, publications and radio. She has been published in Real Simple magazine, Under Armour, Fitness Pal, Natural Practitioner, Naturopathic Doctor News and Review, and the Spa Dr., amongst others, and was asked to appear on the Dr. Oz show.

Dr. Patterson is also the Medical Advisor for Zycal Bioceuticals Healthcare. In addition to her naturopathic medical degree, she has her MBA in Healthcare Management from Quinnipiac University and has her undergraduate degree from Cornell University.

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SHOW NOTES

How do you approach a patient with possible TBI?
Is there a need to improve immunity before going after the infections?
What are some go to therapies?
What are the best ways to reduce the cascade of inflammation?
Lyme can make an opportunistic environment for old viruses to rear their ugly heads.
How does Lyme and co-infections trick the body and become a continuous fight?
How can an infected person help turn their illness around?
How is it that people are misdiagnosed with ALS and MS?
What are the contributing factors for Lyme to be spreading around the world?
Along with awareness are there any other preventable options you suggest?
How to get more healthcare professionals on board with a Lyme diagnosis?

Category:

Inflammation, Lyme, Uncategorized

Bartonella vinsonii subs. arupensis in Animals, and Yes – Humans

https://www.ncbi.nlm.nih.gov/pubmed/32071727

2020 Jan 16;34:100652. doi: 10.1016/j.nmni.2020.100652. eCollection 2020 Mar.

Bartonella vinsonii subsp. arupensis infection in animals of veterinary importance, ticks and biopsy samples.

Chochlakis D1, Cutler S2, Giadinis ND3, Psaroulaki A1.

Abstract

Testing for vector-borne pathogens in livestock is largely reliant upon blood and tissue. The role of biopsy samples remains poorly explored for detecting tick-borne bacteria in animals. In a 2-year survey, animals of veterinary importance from farms throughout the northern part of Greece were routinely checked for the presence of biopsy samples. Where detected, either a portion or a biopsy was collected together with whole blood samples and any ticks at the site of the biopsy sample. Molecular testing was carried out by real-time PCR targeting the internal transcribed spacer gene of Bartonella species. A total of 68 samples (28 blood samples, 28 biopsy samples and 12 ticks (nine Rhipicephalus bursa and three Rhipicephalus turanicus)) were collected from goats (64 samples) and cattle (four samples).

  • Eight (11.8%) of the 68 samples were positive for Bartonella species.
  • Of the biopsy and whole blood samples, four (14.3%) of each type were positive for Bartonella species.
  • None of the ticks tested positive for Bartonella species.
  • All pairs of positive biopsy samples/whole blood samples originated from the same animals.
  • Positive samples were identified as

Although many more samples from a much wider spectrum of animal species is required before concluding upon the merit of biopsy samples in the study of tick-borne diseases, the significance of our finding warrants further study, both for clinical consequences in small ruminants and for those humans who are farming infected animals.

____________________

**Comment**

Bartonella vinsonii subsp. arupensis has been found in humans:  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3358162/

Excerpt:

B. vinsonii subsp. arupensis was first isolated from a bacteremic cattle rancher in Wyoming, USA, in 1999 (). Later studies showed that strains identical to B. vinsonii subsp. arupensis were highly prevalent among deer mice (Peromyscus maniculatus), a strictly North American rodent species frequently found across a wide geographic area, including Wyoming. Similar strains of B. vinsonii subsp. arupensis have not been found in other animals in North America, suggesting that deer mice are natural hosts of this bacterium ().

However, the proposed link between infected mice and B. vinsonii subsp. arupensis infection in humans was challenged when this bacterium was reported in an endocarditis patient in France () and 2 febrile patients in Russia (). The link was further disputed after identification of B. vinsonii subsp. arupensis infection in 2 humans in Thailand () and the subsequent inability to identify this strain or related species among the local rodent population, despite intensive investigation in different parts of Thailand (). B. vinsonii subsp. arupensis was also identified in stray dogs in Thailand (). In addition, B. vinsonii subsp. arupensis–specific antibodies were reported in febrile patients from Nepal (). Together, these reports suggest that the spectrum of animal hosts carrying B. vinsonii subsp. arupensis may be underestimated. We report the identification of B. vinsonii subsp. arupensis in 4 more patients in Thailand.

The 1999 study on the discovery of Bartonella vinsonii subs. arupensis in the human cattle rancher states this:

Excerpt:

The highest level of relatedness was observed with recently characterized strains from naturally infected mice that were coinfected with Borrelia burgdorferi and Babesia microti. We propose the name Bartonella vinsonii subsp. arupensis subsp. nov. as the new subspecies to accommodate these human and murine isolates.  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC85292/

For more:  https://madisonarealymesupportgroup.com/2016/01/03/bartonella-treatment/

 

Category:

Bartonella, Uncategorized

Study Shows Strep Isn’t the Only Culprit in Autoimmune Encephalopathy/PANS

Study here:  https://www.jni-journal.com/article/S0165-5728(19)30352-2/fulltext  Evaluation of the Cunningham Panel™ in pediatric autoimmune neuropsychiatric disorder associated with streptococcal infection (PANDAS) and pediatric acute-onset neuropsychiatric syndrome (PANS): Changes in antineuronal antibody titers parallel changes in patient symptoms

Following excerpt about study found here:  https://www.somerdelsignore.com/the-lyme-corner/lets-talk-lyme-disease/pans/pandas/somer-delsignore/2020/3/12/study-shows-link-between-lyme-disease-and-pansautoimmune-encephalitis-using-cunningham-antibody-testing

Excerpt: 

The significance of this study assists in broadening the diagnosis of Infectious Triggered Autoimmune Encephalopathy/PANS vs. PANDAS further proving that Strep isn’t the only microbial culprit contributing to this condition and further confirming that autoimmune, neuro-inflammatory conditions can in fact be triggered by Lyme disease. The hope is solidifying an encompassing diagnosis that guides treatment lessening further misdiagnosis of children with psychiatric disorders.

For more:  https://madisonarealymesupportgroup.com/2019/04/09/abstract-bartonella-in-boy-with-pans/

https://madisonarealymesupportgroup.com/2017/06/30/child-with-lymemsidspans-told-by-doctors-she-made-it-all-up/

https://madisonarealymesupportgroup.com/2017/12/01/guidelines-for-treating-pans-its-real/

https://madisonarealymesupportgroup.com/2017/04/11/hidden-invaders-infections-can-trigger-immune-attacks-on-kids-brains-provoking-devastating-psychiatric-disorders/

https://madisonarealymesupportgroup.com/2017/10/01/panspandas-steroids-autoimmune-disease-lymemsids-the-need-for-medical-collaboration/

https://madisonarealymesupportgroup.com/2019/05/13/one-familys-story-of-strep-lyme-disease-and-pans-pandas/

 

 

Category:

Uncategorized

CDC’s Recommendations For Lyme Epitomize Institutional Bias

https://www.lymedisease.org/maloney-comments-tbdwg/

CDC’s recommendations for Lyme epitomize institutional bias

Dr. Elizabeth Maloney

Dr. Elizabeth Maloney delivered the following public comments to the federal Tick-Borne Disease Working Group this week.

Good morning committee members, I’m Dr. Elizabeth Maloney. I spoke with you at the January meeting and appreciate the opportunity to speak with you again.

I want to address statements made regarding the independence and neutrality of the CDC’s in-house treatment guidelines made yesterday.

I am concerned about the CDC’s in-house treatment guidelines because they epitomize the institutional bias patients, advocates and providers face with regard to Lyme disease.

A synopsis of IDSA guidelines?

Despite claims to the contrary, the CDC treatment recommendations are merely a synopsis of the IDSA guidelines. The CDC recommendations cite only four references. One of the four states that its treatment recommendations come from the IDSA, while another review ignores ILADS 2014 treatment guidelines entirely.

The sole author of the first review paper was one of four authors of the second. And that latter group included the lead author of the 2006 IDSA guidelines. This suggests that the CDC did not do its own, independent assessment of the evidence.

It was said that the CDC treatment recommendations work well for most patients with EM rashes. I’ve reviewed the comparative trial evidence and concluded that reported outcomes cannot be taken at face value.

Unsupported conclusions

My review identified significant design and execution problems as well as unsupported conclusions. Failing to discuss these obvious shortcomings suggests to me that the CDC treatment recommendations were a foregone conclusion, and that the group simply worked backwards to pick a few supporting references.

Perhaps that explains why a 2013 study of 74 EM patients by Aucott and colleagues wasn’t cited. That carefully designed study demonstrated that 21 days of doxycycline failed to return 40% to their pre-Lyme baseline at six months post-treatment, including 11% who had ongoing symptoms and functional decline and 25% who had ongoing symptoms alone. If this represents “works well for most,” we’ve set the outcome bar much too low.

The CDC suggests that US EM patients can be treated with 14 days of cefuroxime or amoxicillin, yet none of the US trials used these agents for less than 20 days. 10 days of doxycycline is said to be sufficient but of the two trials of that duration, one had a noncompletion rate of 50% and in the other, 36% of the patients were retreated.

Given the poor quality of the CDC’s process for generating recommendations, I now think it’s imperative that the curriculum development team include members who understand the limitations of the current evidence and who include a broader diversity of scientific viewpoints to avoid group think and bias. Otherwise clinicians will get the same old, same old and patients who might be helped won’t be.

Dr. Elizabeth Maloney is President of Partnership for Tick-borne Diseases Education, a 501(c) that provides educational resources to medical professionals and the public. She lives in a high-Lyme area of Minnesota.

_________________

**Comment**

I would have loved to have been a fly on the wall during that lashing.

Category:

Activism, Lyme, Uncategorized

LDO President’s Comment to the TBDWG

https://www.lymedisease.org/mervine-comments-tbdwg/

Condemned to a life of debilitating illness? There’s a better way.

Phyllis Mervine is Founder and President of LymeDisease.org.

March 6, 2020

Phyllis Mervine gave the following public comments via telephone, during the recent federal Tick-Borne Disease Working Group meeting.

The single most important thing the Working Group can do right now for the Lyme community and all the patients suffering with Lyme disease is to ask Congress to instruct the CDC to educate the medical community about the two standards of care.

For years, the CDC promoted and linked to the Lyme diagnostic and treatment guidelines of the Infectious Diseases Society of America (IDSA). This violated its own ethics rules about not taking sides in a scientific debate when the evidence is uncertain, and undermining public trust in government.

They persisted even after new International Lyme and Associated Diseases Society (ILADS) guidelines were published on the National Guidelines Clearinghouse, while the IDSA guidelines were delisted for being out of date.

Today, inexplicably, the CDC does not mention anywhere on its website the only peer-reviewed guidelines that adhere to the rigorous GRADE evidence assessment standards recommended by the National Academy of Sciences.

GRADE recommendations take into account not only the quality of the evidence, but also the balance between benefits and harms and patient values and preferences.

The CDC no longer recommends the IDSA guidelines explicitly.  Instead, it promotes IDSA diagnosis and treatment recommendations chapter and verse. It completely fails to mention the ILADS perspective or even that there are different guidelines.

There are two big problems with this. First, the IDSA guidelines recommend the use of the restrictive surveillance case definition for clinical diagnosis.

As Paul Mead of the CDC has noted in the past, both research definitions and surveillance definitions are not developed to guide clinical diagnosis and care, nor should they be.

Acknowledging “two standards of care” would help

They leave out the vast majority of patients diagnosed in clinical practice. As a result, people are not being diagnosed and are condemned to a life of debilitating sickness. Acknowledging the two standards of care,  would allow more patients to be diagnosed early and saved from years of suffering.

Second, the standard IDSA diagnosis and treatment recommendations leave many patients chronically ill–applying a one-size-fits-all approach to a complex problem. The ILADS standard of care solves this problem by providing individualized treatment that takes into account the patient’s disease risk, severity, and treatment response.

It is time for the CDC to inform the medical community that there are two standards of care. By taking this simple step, the CDC could save lives. Please ask Congress to make this happen.

Phyllis Mervine is Founder and President of LymeDisease.org.

Category:

Activism, Lyme, Uncategorized