Archive for the ‘Lyme’ Category

When Lyme Causes Dysfunction of the Autonomic Nervous System

https://www.lymedisease.org/lyme-autonomic-nervous-system/

When Lyme causes dysfunction of the autonomic nervous system

By Nancy Dougherty

2/8/24

Infection-associated chronic illnesses such as Long COVID, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and chronic Lyme disease share similar symptoms and may share important biologic mechanisms, too.

Dysautonomia, or autonomic nervous system dysregulation, is widely accepted as an underlying contributor to long COVID and ME/CFS.

A multidisciplinary team at Johns Hopkins University School of Medicine has published a research review in Frontiers in Neurology that implicates dysregulation of the autonomic nervous system in post-treatment/persistent Lyme disease.

Common symptoms of these infection-associated chronic conditions include severe fatigue, musculoskeletal pain, cognitive and sleep difficulties.

Although not yet well-established in the medical literature, the Johns Hopkins team, by scrutinizing case reports, autopsy and primate studies, found compelling clinical and biologic bases for the association between dysautonomia and Lyme disease.

More research is warranted to better understand disease mechanisms and identify biomarkers to improve diagnostics and treatments.

POTS

Postural Orthostatic Tachycardia Syndrome (POTS), the most common manifestation of dysautonomia, is reported to occur after an acute Lyme disease infection. POTS has been recognized by some clinicians as a contributor to post-treatment/persistent Lyme disease but has not been studied in depth.

POTS results from impaired regulation of blood flow, particularly when in an upright position. Symptoms can be debilitating and include brain fog, severe fatigue, profound weakness with standing, racing heart, exertional intolerance, light-headedness, and muscle aches. When properly evaluated with formal testing, POTS can be diagnosed and treated.

More research needed

There are gaps in knowledge that the Johns Hopkins researchers aim to address in prospective studies of Lyme disease-associated dysautonomia in order to:

  • Identify underlying abnormal biologic mechanisms causing Lyme disease-associated dysautonomia and to compare those with other infection-associated chronic illnesses
    • Investigate small-fiber neuropathy, endothelial dysfunction, mast-cell activation, autoantibodies, vagus nerve damage, gut microbiome disruption, neuroinflammation, neurotoxicity, genetic predeterminants and other factors
  • Determine the prevalence of small-fiber neuropathy and autonomic dysfunction in chronic Lyme disease using objective autonomic tests and skin biopsies
  • Understand the relationship between acute Borrelia burgdorferi infection and the development of small-fiber neuropathy and autonomic dysfunction
  • Understand the contribution of co-infections to chronic symptoms and dysautonomia
  • Expand prior autopsy and animal studies to better understand the mechanisms Borrelia burgdorferi utilizes to disrupt the autonomic nervous system

Investigating treatments

Treatment trials are also important to advancing patient care:

  • Randomized studies of IVIG treatments are needed
  • Vagus nerve stimulation treatment studies are in progress (at the Columbia University Alexandra and Steven Cohen Foundation Clinical Trial Network site)

Authors of this paper are renowned international authorities in ME/CFS, POTS, and Lyme disease. Research at the Johns Hopkins Postural Orthostatic Tachycardia Syndrome (POTS) Program is ongoing in ME/CFS and Long COVID, and Lyme disease POTS/dysautonomia research is now underway at the POTS Program as well.

To help address some of the gaps in knowledge, new prospective Lyme disease research studies at Johns Hopkins are utilizing transcranial doppler ultrasound, tilt table testing, and other objective tests to help elucidate the abnormalities and mechanisms of Lyme disease-associated dysautonomia. This is the first research program focusing on understanding POTS/dysautonomia in Lyme disease.

Please visit here for more background information on POTS and Lyme disease, including symptoms, diagnostic tests and treatments.

Nancy Dougherty is an education and communications consultant for the Johns Hopkins Lyme Disease Research Center. Other research investigations at the Center include Pilot Treatment Trials and the SLICE Studies.

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**Comment**

Sadly, the study regurgitates the myth that only 10-20% go on to suffer chronic symptoms, when the truth is somewhere between 40-60% or even more.

Again, Lyme/MSIDS research has always been biased due to the extremely limited study design parameters. The sickest never test positive on the antiquated and unscientific CDC 2-tiered testing and most don’t have the EM rash – two parameters continually used despite their glaringly known flaws.

The study also uses the flawed Post Treatment Lyme Disease Syndrome (PTLDS) moniker.

The study authors hope their work will lead to new treatments to improve the quality of life; however, the concern is that these treatments will focus solely on dysautonomia that will ignore pathogen involvement and the need for antimicrobials (i.e. long term antibiotics). 

Category:

Lyme, research

Harvard Magazine: Deciphering Lyme Disease

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

Harvard Magazine; Deciphering Lyme Disease

Carl Tuttle

Hudson, NH, United States

FEB 14, 2024 — 

This is the starting point for a criminal investigation (1979)… see email below to Jacob Lemieux, M.D., Ph.D. who successfully completed genome sequencing  of the spirochete responsible for Lyme disease.

A chronic relapsing SERONEGATIVE disease does not fit the vaccine model. You cannot prove vaccine efficacy with a disease where we don’t know who has or does not have the infection so narrowly define the disease to fit the vaccine model, (fabricated two-tier case definition) deny the chronically infected and your patent royalties continue to reap benefits.

Email to Jacob Lemieux, M.D., Ph.D.

———- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: “jelemieux@partners.org” <jelemieux@partners.org>
Cc: “pardis@broadinstitute.org” <pardis@broadinstitute.org>, “asteere@partners.org” <asteere@partners.org>, “jon_shaw@harvard.edu” <jon_shaw@harvard.edu>, “john_rosenberg@harvard.edu” <john_rosenberg@harvard.edu>, “yourturn@harvard.edu” <yourturn@harvard.edu>, “lindsay_mitchell@harvard.edu” <lindsay_mitchell@harvard.edu>, “natalie_vinard@harvard.edu” <natalie_vinard@harvard.edu>
Date: 02/12/2024 1:14 PM EST
Subject: Harvard Magazine; Deciphering Lyme Disease

Harvard Magazine

Deciphering Lyme Disease

by Jonathan Shaw  JANUARY-FEBRUARY 2024

https://www.harvardmagazine.com/2024/01/right-now-lyme-disease

Excerpt:

“It turned out that the genetic diversity of Lyme disease is orders of magnitude harder to handle than any other pathogen.” And that complexity is associated with the wide range of Lyme disease symptoms—from severe arthritis in children to fatigue and potentially debilitating joint, neurological, and cardiovascular symptoms in adults—that persist in some patients for months or even years after treatment.
 
Some of the genes encode lipoproteins [composed of fats and proteins] on the bacterial surface, which appear to armor the bacteria against immune assault in the bloodstream.”

Feb 12, 2024

Jacob Lemieux, M.D., Ph.D.
Assistant Professor of Medicine, Infectious Disease, MGH

Dear Dr. Lemieux,

Thank you for investing the time into whole genome sequencing of the spirochete responsible for Lyme disease and recognizing the pathogen’s diversity as “harder to handle than any other pathogen.”

Allen Steere documented the severity of Lyme disease in 1979 in his article titled Neurologic abnormalities of Lyme disease with 18 case studies describing meningitis, encephalitis, chorea, cerebellar ataxia, cranial neuritis, bilateral facial palsy, motor and sensory reticuloceratids, mononeuritis multiplex, and myelitis. Eight patients continued to have residual disability with some unable to walk.

These are the same experiences exposed in the documentaries; Under our Skin and The Quiet Epidemic  as well as fourteen-year-old Lyme patient Evan White who testified in a 1993 hearing in Washington while in a wheelchair.

Additional reference:

Study detects tick-borne illness in teens hospitalized for depression
https://www.lymedisease.org/hospitalized-teens-lyme-depression/

-Ten patients were diagnosed with DSM-5 Major Depressive Disorder, seven were additionally diagnosed with Generalized Anxiety Disorder, and three had made serious suicide attempts.

-Ten adolescents picked at random with mental illness severe enough that they required institutionalization—nine of them had evidence of tick-borne infections and nine had evidence of autoimmune encephalitis.

So why was this disabling infection transformed into a low-risk and non-urgent health issue as reported in the 2001 New York Times article “Lyme Disease Is Hard to Catch And Easy to Halt” effectively eliminating Social Security Disability compensation for the hundreds of thousands (perhaps millions worldwide) who end up disabled from the disease?

Your study Dr. Lemieux should be the foundation for a Manhattan Project to find a cure for chronic Lyme disease as a mountain of evidence has been growing and ignored by the IDSA/CDC and NIH that we have been dealing with an antibiotic resistant/tolerant superbug.

Instead of finding a cure, all the eggs were put into the vaccine basket. (LYMErix)

Let us hope your findings move the research forward to find a cure and not used by our public health officials with a vaccine agenda to scare the public into submission.

Respectfully submitted,
Carl Tuttle
Hudson, NH

Cc: Jonathan Shaw,  Managing Editor, Harvard Magazine

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**Comment**

Don’t hold your breath.

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Category:

Activism, Lyme, research

The Sleeper Agent: The Rise of Lyme Disease, Chronic Illness, and the Great Imitator Antigens of Biological Warfare

https://rumble.com/v44b6n0-my-findings-willy-burgdorfer-did-not-weaponize-lyme-disease-and-co-infectio.html

The Sleeper Agent: The Rise of Lyme Disease, Chronic Illness, and the Great Imitator Antigens of Biological Warfare

By A.W. Finnegan

This book details out the esoteric history of biological warfare in a way that no other book has done, based on only official records, documents, science and medical journals, former intelligence officers, and more.

The history of this war goes much deeper than any other book on the subject has presented, based on understandings and studies of science that have been purposefully buried and obscured.

The author collected and studied the work of one of history’s most exceptional yet infamous pioneers in virology and immunology, a German scientist by the name of Dr. Erich Traub, for several years, in the process of writing this book, a process which perhaps no one else has managed to undertake, until now.

About the Author
A.W. Finnegan is a survivor of Lyme disease and immune tolerance, and has been battling health problems since he was young, with the onset of a chronic disease in 2016. He is a writer, graphic artist & designer, an avid reader and researcher of history, biological warfare, esoteric philosophy, spirituality, and the Western Mystery Traditions. He has made a special study of the life and work of Erich Traub and the science of immune tolerance. He has collected and translated to English all of Traub’s published research. He lives in Cape Cod, Massachusetts, peacefully by himself, where he enjoys BMX biking, fitness, study, the arts, and self-development.
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Canadian Professor Donald W. Scott, using US government FOIA documents gathered in the 1970s, described in great detail the politicians, scientist/researchers, institutions and methods by which this most odious form of warfare has been conducted.

Books by Scott:

  • The Brucellosis Triangle
  • The Extremely Unfortunate Skull Valley Incident
  • Aids: The Crime Beyond Belief  Please see this eye-opening documentary: The Origins of AIDS  shares the hypothesis that HIV may have been caused by mass vaccination against Polio in Congo between 1957-1960.
  • Amyotrophic Lateral Sclerosis  On page 20 of their Patent, the following patients were listed as being infected with the Mycoplasma fermentans: AIDS, Alzheimer’s, Sarcoidosis, Lupus, chronic fatigue syndrome and others [Appendix Two]. The authors extend the above list by adding Amyotrophic Lateral Sclerosis, supported by solid, reproducible scientific evidence. The pathogenic mycoplasma up-takes pre-formed cholesterol from the Glial cells which surround the degenerating motor-neurons of the ALS victim. The loss of this cholesterol prevents the motor neurons from replenishing and replacing damaged synapses. With the synapses not functioning, the messages from the cortex of the brain do not get through to the muscles and Lou Gehrig’s Disease presents.  All the diseases listed in the U.S. Government Patent are indeed caused by a common factor: the Pathogenic Mycoplasma. With the probable cause well-established, the Scotts conclude their study with a possible cure for all the neurosystemic degenerative diseases.

It must be mentioned again, that our own government has sprayed into the air all manner of toxins that are linked to disease:

For more on Mycoplasm:

Category:

Activism, Lyme, Mycoplasma

Canadian Lyme Patients Keep Looking For Solutions

https://www.lymedisease.org/canadian-lyme-patients-solutions/

Canadian Lyme patients keep looking for solutions

By Catherine Kinsella, CanLyme

1/25/24

What happens when growing numbers of patients are unable to receive a diagnosis and adequate treatment for Lyme disease? They keep looking for solutions, both individually and collectively.

This in-depth article by Cox and Levesque in Zoonotic Diseases gives context to many of the systemic barriers that Canadian Lyme patients encounter, and highlights the important role that patient organizations play in addressing those barriers.1

The divergence between the lived patient experience and clinical evidence defended by influential scientists threatens the health and well-being of patients whose symptomology does not conform to guidelines sanctioned by health authorities.

The authors discuss the interface between various scientific approaches and the reality and experience of patients in the context of limited clinical and scientific evidence. They point out that selected experts can become gatekeepers for research, health policy and for direct access to healthcare. They cite guidance from The Nova Scotia Infectious Diseases Expert Group that includes strict diagnostic criteria, preventing many patients from receiving diagnosis and treatment.

The importance of patient organizations

Cox and Levesque also review the historical role that patient organizations have played in supporting patients and the challenges these organizations encounter when lobbying for changes to healthcare policy. They note that Lyme disease (LD) organizations are established in response to the disparity between patient experiences and medical authority, and present an approach that values scientific evidence, clinical judgement and expertise.

Using the framework of embodied health movements, we highlight the motivation and mobilization of LD patient organizations and a need for the mutual appreciation of scientific evidence, clinical judgement, and experiential knowledge.

The emphasis is on evidence-informed medicine as a tenet of person-centred medicine with the understanding that scientific knowledge is a means to support rather than limit clinical judgement.

The authors clearly articulate what lies at the core of the problem; a restrictive and outdated understanding of Lyme disease that is sustained by the approach and guidelines set out by the Infectious Diseases Society of America (IDSA), and is supported by health authorities and associations in Canada.

This understanding fails to take into account the scientific and clinical evidence regarding persistence of the bacteria, the effect of the bacteria on the immune system and inflammation, interactions with other infections in the body and the chronic and complex manifestations of the disease.

Physicians are pressured to conform to guidelines that limit clinical judgement and do not adequately address LD cases.

Patients taking lead in research

Patients and patient organizations also have a critical role to play in ongoing research. Cox and Levesque discuss the events that followed the 2016 Conference to develop a framework on Lyme disease, a conference that was designed to develop a better understanding of Lyme disease.

Over five hundred patients, caregivers, health professionals, representatives from the federal government, PHAC, CanLyme, and AMMI were in attendance. Many LD patients spoke at the conference, sharing personal experiences with misdiagnosis, a lack of awareness of LD, the failure to provide treatment options, and inaccurate testing and reporting. CanLyme president Jim Wilson stressed the need for patients to be equal partners in LD health policy.

Both the framework and the allocation of research funding that followed failed to reflect and appreciate the importance of the patient voice in terms of policy and research.

Despite assurances given by health officials and politicians at the 2016 conference, patient organizations were denied a role with funds given entirely to the newly formed Canadian Lyme Disease Research Network (CLyDRN).

One must be wary of ambiguous terms like “patient engagement” that allow token participation but deny authority. The objective is an equal partnership with other stakeholders for transparency and accountability and to ensure that the lived experience of LD is fairly represented and heeded.

The authors review many of the initiatives that patients and patient organizations have embarked upon over the years, and point to future hope with patient driven funding and the persistence of patient organizations in working toward patient-centered solutions.

Catherine Kinsella is a retired RN, content creator, writer and coordinator of the Education Grant Program for the Canadian Lyme Disease Foundation.

Citation

Cox M, Levesque M. “Small Wins” for those with Lyme Disease in Canada: Patients in an Embodied Health Movement. Zoonotic Diseases. 2024; 4(1):22-36. https://doi.org/10.3390/zoonoticdis4010004

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Category:

Activism, Lyme

Power Up Your Mighty Mitochondria

https://www.treatlyme.net/guide/mitochondria-dysfunction-repair-lyme  Go here for Video

Power Up Your Mitochondria In Tick Borne Infections and Mold Toxicity Image

Major Update: 2/9/24

Marty Ross, MD Discusses Mitochondria Energy

Mitochondria Create Cell Energy

It is possible to improve your energy and fatigue in chronic Lyme disease, tick-borne infections, mold toxicity, and other illnesses by improving the function of the cell power factories called mitochondria. For many with fatiguing illnesses, the mitochondria get injured and do not produce enough energy. However, there are effective steps that fix the damage and give energy back.

Mitochondria are the energy factories found in every cell in the body. By some estimates, there are nearly 400 per cell. In chronic Lyme disease or in toxicity issues, due to oxidative stress the mitochondria can be injured, leading to fatigue that will not improve. In oxidative stress, chemicals build up that can damage membranes and even the DNA genetic material of mitochondria.

As power factories, mitochondria create a type of cell fuel called ATP. The fuel sources for mitochondria are fat and sugar, and both need to be transported to the inside of the mitochondria. ATP is created when fat and sugar are burned through several chemical reactions called the citric acid cycle and another process called oxidative phosphorylation.

Transport of fat and sugar into mitochondria requires a healthy mitochondria membrane. Oxidative phosphorylation also requires a healthy membrane. When the membranes are injured through oxidative stress, sugar and fat fuel sources for ATP cannot reach the inside of the mitochondria. Electron transfer in oxidative phosphorylation that leads to most ATP production is also blocked. Mitochondria membrane injury leads to low cell ATP and thus, fatigue. (See link for article and video)

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Category:

Activism, diet and nutrition, Lyme, Mold, Supplements, Treatment