Archive for the ‘research’ Category

Molecular Detection of Bartonellosis

https://wwwnc.cdc.gov/eid/article/29/3/22-1223_article

Bartonella spp. Infections Identified by Molecular Methods, United States

David W. McCormick, Sara L. Rassoulian-Barrett, Daniel R. Hoogestraat, Stephen J. Salipante, Dhruba SenGupta, Elizabeth A. Dietrich, Brad T. Cookson, Grace E. Marx1Comments to Author , and Joshua A. Lieberman1
Author affiliations: Centers for Disease Control and Prevention, Fort Collins, Colorado, USA (D.W. McCormick, E.A. Dietrich, G.E. Marx)University of Washington, Seattle, Washington, USA (S.L. Rassoulian-Barrett, D.R. Hoogestraat, S.J. Salipante, D. SenGupta, B.T. Cookson, J.A. Lieberman)
March, 2023

Abstract

Molecular methods can enable rapid identification of Bartonella spp. infections, which are difficult to diagnose by using culture or serology. We analyzed clinical test results of PCR that targeted bacterial 16S rRNA hypervariable V1–V2 regions only or in parallel with PCR of Bartonella-specific ribC gene. We identified 430 clinical specimens infected with Bartonella spp. from 420 patients in the United States. Median patient age was 37 (range 1–79) years; 62% were male.

We identified:

  • B. henselae in 77%
  • B. quintana in 13%
  • B. clarridgeiae in 1%
  • B. vinsonii in 1%
  • B. washoensis in 1% of specimens
  • B. quintana was detected in 83% of cardiac specimens
  • B. henselae was detected in 34% of lymph node specimens

We detected novel or uncommon Bartonella spp. in 9 patients. Molecular diagnostic testing can identify Bartonella spp. infections, including uncommon and undescribed species, and might be particularly useful for patients who have culture-negative endocarditis or lymphadenitis.

______________

Currently, 12 species of Bartonella genus are associated with human infection, but that number is constantly changing. Because Bartonella spp. infections are not nationally notifiable diseases, there is limited knowledge of the epidemiology of this disease in the US.  In my experience it is prolific.

For more:

Pacemakers for Lyme Carditis

https://danielcameronmd.com/pacemakers-for-lyme-carditis/

PACEMAKERS FOR LYME CARDITIS

pacemaker-lyme-carditis

Some patients with Lyme carditis (LC) require implantation of a pacemaker. Yeung and Baranchuk discussed the need for “preventing unnecessary implantation of permanent pacemakers in otherwise healthy young individuals” in the Journal of the American College of Cardiology in 2019.

Lyme disease can directly infiltrate the heart leading to an exaggerated inflammatory response when spirochetes penetrate the heart. Lyme carditis can appear within 1 to 2 months after the onset of a Lyme disease infection, wrote Yeung and Baranchuk.¹ They point out, the most common presentation of LC (90%) is high-degree atrioventricular (AV) block (AVB).

AV block due to Lyme disease can be successfully treated with antibiotics in a hospital setting. However, in some cases, a temporary or permanent pacemaker is required. In reviewing the literature, Besant and colleagues found that 17.9% of patients with LC required a permanent pacemaker and 10.3% required a temporary and a permanent pacemaker.²

“High-degree atrioventricular block is the most common presentation of [Lyme carditis], and usually resolves with antibiotic therapy.”¹

Yeung et al. highlighted the importance of avoiding a permanent pacemaker “to prevent the inherent risks of pacemaker implantation, including periprocedural infections and complications, lead dislodgement, etc.”

Furthermore, the authors emphasized the importance in avoiding a permanent pacemaker in children. “An unnecessary pacemaker implantation would result in a subsequent lifetime of multiple pulse generator changes, psychological/physical sequelae, and burden of associated cumulative health care costs.”

They concluded, “A systematic approach to the diagnosis and treatment of LC will facilitate the identification of LC in patients with high-degree AVB, thus preventing unnecessary implantation of permanent pacemakers.”

Both a standard transvenous temporary pacemaker lead, or modified temporary–permanent transvenous pacing are available.

“In modified temporary– permanent transvenous pacing, an active fixation lead is attached to a resterilized permanent pace- maker generator taped to the patient’s skin and used as a temporary external device, which allows for early ambulation,” wrote Yeung and Baranchuk.

A permanent pacemaker has been recommended if AV conduction is not restored.

References:
  1. Yeung C, Baranchuk A. Diagnosis and Treatment of Lyme Carditis: JACC Review Topic of the Week. J Am Coll Cardiol. Feb 19 2019;73(6):717-726. doi:10.1016/j.jacc.2018.11.035
  2. Besant G, Wan D, Yeung C, et al. Suspicious index in Lyme carditis: Systematic review and proposed new risk score. Clin Cardiol. Dec 2018;41(12):1611-1616. doi:10.1002/clc.23102

For more:

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.   “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.”

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:

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.