Archive for the ‘research’ Category

Clinical Microbiology Reviews; “Lab Diagnosis of Lyme Borreliosis”

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u

Clinical Microbiology Reviews; “Laboratory Diagnosis of Lyme Borreliosis”

Carl Tuttle

Hudson, NH, United States

FEB 21, 2023 — 

Please see the inquiry below addressed to the authors of this publication titled Laboratory Diagnosis of Lyme Borreliosis. There has been no response from Branda or Steere…

———- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: “branda.john@mgh.harvard.edu” <branda.john@mgh.harvard.edu>, “asteere@mgh.harvard.edu” <asteere@mgh.harvard.edu>
Cc: “cmr-eic@asmusa.org” <cmr-eic@asmusa.org>, “jdienbard@chla.usc.edu” <jdienbard@chla.usc.edu>, “fcfang@uw.edu” <fcfang@uw.edu>, “louisa.messenger@unlv.edu” <louisa.messenger@unlv.edu>, “johann.pitout@cls.ab.ca” <johann.pitout@cls.ab.ca>, “schuetz.audrey@mayo.edu” <schuetz.audrey@mayo.edu>, “cmstaley@umn.edu” <cmstaley@umn.edu>, “achen@mathematica-mpr.com” <achen@mathematica-mpr.com>, “info@mathematica-mpr.com” <info@mathematica-mpr.com>, “pdecker@mathematica-mpr.com” <pdecker@mathematica-mpr.com>, “lwx1@cdc.gov” <lwx1@cdc.gov>, “frederick.chen@ama-assn.org” <frederick.chen@ama-assn.org>, “gmarx@cdc.gov” <gmarx@cdc.gov>, “acoyne@mathematica-mpr.com” <acoyne@mathematica-mpr.com>, “jconstantine@mathematica-mpr.com” <jconstantine@mathematica-mpr.com>, “ctrenholm@mathematica-mpr.com” <ctrenholm@mathematica-mpr.com>, “tbarnes@mathematica-mpr.com” <tbarnes@mathematica-mpr.com>, “sboudreau@mathematica-mpr.com” <sboudreau@mathematica-mpr.com>, “jdevallance@mathematica-mpr.com” <jdevallance@mathematica-mpr.com>, “sara.berg@ama-assn.org” <sara.berg@ama-assn.org>, “jack.resneck@ucsf.edu” <jack.resneck@ucsf.edu>, “jack.resneck@ama-assn.org” <jack.resneck@ama-assn.org>, “todd.unger@ama-assn.org” <todd.unger@ama-assn.org>, “jon.burkhart@ama-assn.org” <jon.burkhart@ama-assn.org>, “karen.kmetik@ama-assn.org” <karen.kmetik@ama-assn.org>, “sanjay.desai@ama-assn.org” <sanjay.desai@ama-assn.org>, “william_henderson@paul.senate.gov” <william_henderson@paul.senate.gov>

Date: 02/10/2023 9:02 AM
Subject: Clinical Microbiology Reviews; “Laboratory Diagnosis of Lyme Borreliosis”
Clinical Microbiology Reviews
Published online 2021 Jan 27
 
Laboratory Diagnosis of Lyme Borreliosis
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7849240

John A. Branda and Allen C. Steere

“Lyme borreliosis is caused by a growing list of related, yet distinct, spirochetes with complex biology and sophisticated immune evasion mechanisms.”

Dear Drs. Branda and Steere,
I read your manuscript with great interest. While searching for the word “seronegative” I came across seven results in your publication but could not find the following references:

There is a wrongful death lawsuit in the state of NY where a 17yr old collapsed in his front yard later pronounced dead at the hospital. His Lyme test was negative.

1. Wrongful death suit shows pitfalls of IDSA Lyme guidelines
Joseph Elone died of Lyme disease
By Mary Beth Pfeiffer Sept 9, 2019
https://www.lymedisease.org/elone-wrongful-death-lawsuit-lyme/

In Pennsylvania there was a civil lawsuit against doctors who misdiagnosed Lyme disease as multiple sclerosis. The patient had four negative serologies but the fifth one came back positive.

2. Pa. Supreme Court to Hear Medical Liability Case with Statute of Limitations Implications
https://www.pamedsoc.org/list/articles/Statute-of-Limitations

Duke University Oncologist Dr. Neil Spector required a heart transplant; his Lyme serology was repeatedly negative.

3. Gone in a Heartbeat: A Physician’s Search for True Healing
https://lymediseaseassociation.org/book-list/gone-in-a-heartbeat-a-physician-s-search-for-true-healing-by-neil-spector-md/

I would like to point out the following case study from Stony Brook Lyme clinic. I understand the patient received thirteen spinal taps, multiple courses of IV and oral meds, and relapsed after each one, proven by CSF antigens and/or PCR. The only way this patient (said to be a physician) remained in remission was to keep her on open ended clarithromycin- was on it for 22 months by the time of publication. Standard antibody tests were negative.

4. Seronegative Chronic Relapsing Neuroborreliosis.  
https://www.ncbi.nlm.nih.gov/pubmed/7796837
Lawrence C. Lipton R.B. Lowy F.D. Coyle P.K.

Department of Medicine, Department of Neurology, and Division of Infectious Diseases, Albert Einstein College of Medicine, and Department of Neurology, State University of New York at Stony Brook, New York, NY., USA

Abstract
We report an unusual patient with evidence of Borrelia burgdorferi infection who experienced repeated neurologic relapses despite aggressive antibiotic therapy. Each course of therapy was associated with a Jarisch-Herxheimer-like reaction. Although the patient never had detectable free antibodies to B. burgdorferi in serum or spinal fluid, the CSF was positive on multiple occasions for complexed anti-B. burgdorferi antibodies, B. burgdorferi nucleic acids and free antigen.

5. Seronegativity in Lyme borreliosis and Other Spirochetal Infections 16 September 2003
https://www.dropbox.com/s/3d6m45jzlhhwalu/Seronegativity.pdf?dl=0

Here is a recent wrongful death lawsuit in the state of Maine: (I understand Mr. Smith’s Lyme test was negative)

Mercy Hospital, physician ordered to pay $6.5M for deadly misdiagnosis
Pete Smith, 25, died in 2017 after a doctor failed to recognize the signs of Lyme Disease
https://www.wmtw.com/article/mercy-hospital-physician-ordered-to-pay-dollar65m-for-deadly-misdiagnosis/42745675

Regardless of your so-called “advances in diagnostics” these references prove serology has always been the wrong diagnostic tool for an infection that often produces no detectable antibodies in all stages of disease. 1   “Spirochetes with complex biology and sophisticated immune evasion mechanisms” as you pointed out in your summary.

Is there a reason why the references I have presented here are missing from your publication?
A response to this inquiry is requested.
A copy of this inquiry has been sent to the management team at Mathematica Policy Research who have recently been contracted by the CDC.

Respectfully submitted,
Carl Tuttle
Hudson, NH

Cc: CMR Editorial Board

Reference:

1.  HB490 COMMISSION TO STUDY TESTING FOR LYME AND OTHER TICK-BORNE DISEASES
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/30346445

In November 2021, a commission created by the State of New Hampshire finished an exhaustive investigation of Lyme disease test accuracy. The commission reported that only 20-30% of people exhibit antibodies at detectable levels, and the commission concluded that “CDC-approved serologic tests for Lyme disease are unreliable in all stages of the disease.”

Category:

Activism, Lyme, research, Testing

Fibromyalgia Associated With Borrelia-Specific T Lymphocytes

https://www.eurekaselect.com/article/129522

Antinuclear antibody seropositivity in fibromyalgia associated with Borrelia-specific T lymphocytes

Author(s): Basant K. Puri*, Gary S. Lee and Armin Schwarzbach

DOI: 10.2174/1573397119666230215124048

Current Rheumatology Reviews 2023; 19()

Abstract

Background: Our group have recently reported that there is no evidence of an association between fibromyalgia and Borrelia-specific T lymphocytes. However, a small number of case reports has suggested that infection by the bacterial genus Borrelia may be associated with the presence of antinuclear antibodies (ANAs).

Objective: To test the hypothesis that those fibromyalgia patients who are ANA seropositive are more likely to show evidence of Borrelia-specific T lymphocyte reactivity than those who are seronegative.

Methods: T lymphocyte reactivity to Borrelia burgdorferi sensu stricto (full antigen) was assessed using the enzyme-linked immunospot and serum ANA status was assessed using immunofluorescence in 27 fibromyalgia patients fulfilling the revised diagnostic criteria of the American College of Rheumatology.

Results: The ANA seropositive and seronegative groups were matched for age, sex and ethnicity; the T lymphocyte reactivity to Borrelia burgdorferi sensu stricto (full antigen) in the former group (mean 5.60) was significantly higher than that in the seronegative group (mean 1.81; p < 0.05).

Conclusion: This novel study points to an association of ANA seropositivity in fibromyalgia with Borrelia-specific T lymphocytes.

For more:

Category:

Lyme, research, Testing

National Academies Take on Thorny Issue of ‘Long-Haul’ Diseases

https://www.lymedisease.org/nasem-long-haul-diseases/

National Academies take on thorny issue of “long-haul” diseases

Feb. 17, 2023

The National Academies of Sciences, Engineering, and Medicine (known collectively as NASEM) are private, nonprofit institutions that study complex challenges facing our country and give expert guidance on how to solve them.

NASEM has a reputation for providing independent, objective and nonpartisan advice with high standards of scientific and technical quality.

Now, the Academies are taking on the thorny issue of “long-haul” diseases, focusing specifically on long COVID, myalgic encephalomyelitis/chronic fatigue syndrome, persistent Lyme disease, and multiple sclerosis.

In June, NASEM will hold a workshop called “Toward a Common Research Agenda in Infection-Associated Chronic Illnesses: A Workshop to Examine Common, Overlapping Clinical and Biological Factors.”

As LymeDisease.org CEO Lorraine Johnson points out, “these conditions are frequently neglected in research and medicine. As a result, patients who become profoundly ill are unable to receive treatment. This workshop brings together patients, clinicians, and researchers to build a collaborative effort among these communities to improve care.”

Johnson, Principal Investigator of the MyLymeData research project, is one of eight subject matter experts serving on the planning committee for the June event. Also on the panel is Dr. Brian Fallon, director of Columbia University’s Lyme & Tick-Borne Diseases Research Center. Click here to learn about other members of the group.

Research and knowledge gaps

According to the NASEM website, workshop discussions will consider the latest research and knowledge gaps in the following:

  1. Overlapping clinical and biological factors underlying infection-associated chronic illnesses.
  2. Current practice and novel technologies to develop urgently needed diagnostic tests for different stages of illness and/or the potential underlying infectious agent.
  3. Identification of therapeutic targets and strategies to prevent or impede chronic illness progression.
  4. Coordination and collaboration among various stakeholders and practitioners that will increase research and enhance care across different patient populations.

The two-day event will be held June 29 and 30 in Washington DC. You can also attend virtually. Click here for registration information.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, President of LymeDisease.org. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.

Category:

Activism, Lyme, research

Newly Emerging Tick-borne Disease in Northern California

https://www.lymedisease.org/newly-emerging-tick-borne-disease-in-northern-california/

Newly emerging tick-borne disease in Northern California

Feb. 17, 2023

From the County of Santa Clara Vector Control District, via Facebook:

Pacific Coast Tick Fever (PCTF) is a newly emerging tick-borne disease in Northern California, transmitted by the Pacific Coast tick (Dermacentor occidentalis).

Symptoms of PCTF include fever, headache, and an eschar formation [dead tissue] at the tick bite site.

The first case of PCTF within Santa Clara County was reported in 2011 and the second human case was reported in August 2021, both in the same geographic area.

Over a six-month period, the District conducted monthly sampling at the resident’s home and surrounding parks within a one-mile radius. The ticks were collected, identified, and tested for the presence of the pathogen. The pathogen was detected in 5.2% (7 out of 134) of the ticks tested.

The District will continue to monitor for the presence of PCTF and reminds the public to take proactive steps to protect themselves from tick bites by staying in the middle of trails, wearing long sleeves and pants when hiking, and checking themselves, children, and pets after spending time in tick habitat.

Related Posts:

  1. In California, is it Lyme disease or tick-borne relapsing fever?
  2. NEWS: Tick-borne RMSF death in Southern California
  3. Tick-borne Heartland virus reported in Southern Illinois
  4. NEWS: Tick-borne miyamotoi pathogen found in 19 California counties

For more:

Category:

Activism, research, Ticks

Increasing Spread of Lyme Disease in Europe

https://danielcameronmd.com/increasing-spread-of-lyme-disease-in-europe/

INCREASING SPREAD OF LYME DISEASE IN EUROPE

lyme-disease-europe

The number of Lyme disease cases continues to climb in the U.S. and Europe despite preventative measures. A new study examines the prevalence of Lyme disease in Greece, a country that has questioned its existence.

By 

The existence of Lyme disease in Greece remains controversial. In a recent study  “Serological evidence of possible Borrelia afzelii lyme disease in Greece,”  Karageorgou and colleagues examined patients throughout Greece suspected for Lyme disease by enzyme-linked immunosorbent assay (ELISA) and by western blotting for Borrelia burgdorferi sensu lato species.

“We found one patient positive for Borrelia burgdorferi and two patients positive for Borrelia afzelii specific antibodies. Both B. afzelii patients were suffering with neurological manifestations and had never traveled abroad,” the authors wrote.¹

Their findings indicate evidence of two autochthonous Lyme disease cases in Greece, possibly caused by B. afzelii.

“Suggestions that Lyme disease exists in Greece remain controversial and no study to date has definitively identified the presence of a Borrelia spp. that infects humans.”

In another study, Olafsdotti and Askling reviewed the possible reasons behind the growing number of cases in the U.S. and abroad.² “Reasons for poor progress in limiting the disease are manyfold” and include:

  1. The surveillance system for Lyme disease remains highly variable, despite European Union surveillance to standardize definition.
  2. “There are still substantial diagnostic gaps for the disease given its varied and unusual presentation.”
  3. “Absence of reliable assays for acute infection.”
  4. “Difficulty in differentiating past disease from current disease.”
  5. “An inability to monitor treatment response.”

Furthermore, the poor prognosis in limiting the disease is expected to be worse with climate change, wrote the authors.

The authors stressed the need to overcome diagnostic challenges, develop better surveillance strategies and policies for Lyme disease, as well as identify a safe and effective vaccine against Borrelia burgdorferi.

Karageorgou et al. concludes, “We demonstrate the possibility of the presence of B. afzelii in Greece. Therefore, we need to raise awareness of Lyme disease among healthcare providers and ensure that B. afzelii, and possibly also other Lyme borrelia species must be taken into account. The true underlying rate of Lyme disease in Greece remains unknown.”

References:
  1. Karageorgou I, Koutantou M, Papadogiannaki I, Voulgari-Kokota A, Makka S, Angelakis E. Serological evidence of possible Borrelia afzelii lyme disease in Greece. New Microbes New Infect. Mar 2022;46:100978. doi:10.1016/j.nmni.2022.100978
  2. Olafsdottir B, Askling HH. Increasing spread of borreliosis in Europe. New Microbes New Infect. 2022 Aug 29;48:101022. doi: 10.1016/j.nmni.2022.101022. PMID: 36176541; PMCID: PMC9513809.

_______________

**Comment**

The fact people are still quibbling over where and if Lyme exists should tell you everything you need to know about this very real plague, which the climate doesn’t affect one iota.

Category:

Lyme, research