Archive for the ‘Lyme’ Category

‘Near-Universal’ Negative Experiences With Healthcare Providers Reported by Lyme Disease Patients

https://danielcameronmd.com/near-universal-negative-experiences-with-healthcare-providers-reported-by-lyme-disease-patients/

‘NEAR-UNIVERSAL’ NEGATIVE EXPERIENCES WITH HEALTHCARE PROVIDERS REPORTED BY LYME DISEASE PATIENTS

Lyme patient expressing frustration with doctor.

Lyme disease can be a challenging illness for both physicians and their patients. In an article entitled “Knowing the entire story – a focus group study on patient experiences with chronic Lyme-associated symptoms (chronic Lyme disease),” Baarsma et al. share various perspectives of self-identified chronic Lyme disease patients from the Dutch Lyme community.

By Dr. Daniel Cameron

“Healthcare providers frequently struggle to provide effective care to patients with chronic Lyme-associated symptoms…potentially causing these patients to feel misunderstood or neglected by the healthcare system,” the authors wrote.

They listed 6 themes that emerged from the participants experiences: Late diagnosis, abandonment, loss, unpredictability, lack of understanding, and a need for a holistic experience.

The authors unfortunately found, “Negative experiences with healthcare providers were near-universal, also in patients with short-lived CLD-associated symptoms.”

Here are a few of the participants experiences with healthcare providers.

Lack of in-depth questioning

“If the GP had asked something, then I would have remembered. If he had asked: “Have you been in the woods, have you had a tick bite?”, then I would have [said]: “Yeah, I did have a tick bite.” And then maybe, well, then you hope that it [would have] been treated at that time. But that didn’t happen and he didn’t ask.”

Lack of seeing the ‘big picture’

“They only look at that one thing, […] but all that time no-one looked at the entire picture.”

Need to fit into clinician’s viewpoint

“You go to a doctor with the anticipation that they are going to make an effort for you, but along the way you notice that they have their own interests and ideas, and if you don’t fit into their frame of reference then you can go. Yeah, the doctor is only insulting.”

Patients feeling not heard

“What I think is a pity, is… you go through a lot in a short while, all sort of things happen, and, uhm, there’s a doctor in front of you who doesn’t want to hear it. Look, when you try to describe a symptom, you experience that for the first time, you also don’t know what the medical term is. You try to describe something, but you just notice that the other side of the table is completely disinterested.”

Symptoms dismissed as psychiatric

“Well, they can’t find anything, so it must be ‘between the ears.’”

“In summary, we find that CLD patients experience significant symptoms, for which they only rarely find adequate relief from regular medical practitioners.”

The authors concluded, “Verbalizing these themes, patients use various repertoires for their shared experiences, such as a feeling of abandonment or not being heard by the medical system, feelings of loss with respect to their previous health, and the idea that they might have been better off had they been diagnosed sooner.”

Furthermore, “We hypothesize that these findings are not unique to CLD, but may also be applicable to other conditions with an uncertain aetiology, such as Long COVID,” they wrote.

References:
  1. Baarsma ME, Claassen SA, van der Horst HE, Hovius JW, Sanders JM. Knowing the entire story – a focus group study on patient experiences with chronic Lyme-associated symptoms (chronic Lyme disease). BMC Prim Care. Jun 2 2022;23(1):139. doi:10.1186/s12875-022-01736-5

Spotting the Target: Clinical Clues in the Diagnosis of Disseminated Lyme Disease in Pregnancy

https://www.ajog.org/article/S0002-9378(22)00203-4/fulltext

Spotting the target: clinical clues in the diagnosis of disseminated Lyme disease in pregnancy

Published:March 18, 2022 DOI:https://doi.org/10.1016/j.ajog.2022.03.03

A 33-year-old G2P1 woman at 33 weeks’ gestation presented with 10 days of bifrontal headache despite treatment with sertraline, butalbital-acetaminophen-caffeine, and prochlorperazine and 2 days of pruritic body rash (Figure 1).

Blood pressure and urine protein: creatinine ratio were within normal limits, but she had mild transaminitis. Her rash was originally thought to be caused by a drug-induced hypersensitivity reaction, however, in addition to a generalized morbilliform eruption, a physical examination revealed a large annular erythematous patch with a dusky center on the left popliteal fossa (Figure 2)  and similar smaller annular lesions on the buttocks and legs (Figures 3 and 4).

The findings of large and multiple erythema migrans lesions and associated headache prompted a high suspicion for disseminated Lyme disease with neurologic involvement. Serum tests for Lyme disease, including whole-cell enzyme-linked immunosorbent assay and Western blot (for immunoglobulins M and G), were positive. A lumbar puncture revealed elevated red blood cells and nucleated cells in the cerebrospinal fluid consistent with neurologic involvement of Lyme disease. The patient recovered with intravenous ceftriaxone for 2 weeks for disseminated Lyme disease. She delivered a healthy baby boy at 40 weeks’ gestation.

(See link for article)

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**Comment**

Unfortunately many do not remain “recovered” after only 2 weeks of antibiotics.  This woman and her baby need to be watched over time.  If mysterious, migrating symptoms continue – they need retreatment.

This is a perfect example of a glaring problem with Lyme/MSIDS.  Mainstream medicine treats it as they do other infections when this is a relapsing illness that is stealthy, embeds itself in the human body, (making it hard for treatments to reach it) is often polymicrobial (numerous pathogens that require different medications), is pleomorphic (changes forms) so the body can’t recognize it as a “bad guy,” and is often relapsing (reappears) at a later date due to stress when the body is in a weakened state.

Please read a few articles to understand these issues better:

For more on Lyme/MSIDS in pregnancy:

Lyme Arthritis With Rheumatoid Arthritis Leads to Poor Quality of Life

https://danielcameronmd.com/lyme-and-rheumatoid-arthritis-impairs-quality-of-life/

LYME ARTHRITIS WITH RHEUMATOID ARTHRITIS LEADS TO POOR QUALITY OF LIFE

Man with lyme arthritis rubbing his wrist.

Lyme Arthritis and Rheumatoid Arthritis can greatly impair a person’s quality of life. A recent study examines survey results from 90 patients to assess the levels of impairment for patients with both these conditions.

In the study “Assessment of quality of life in patients with Lyme arthritis and rheumatoid arthritis,” Yuskevych and colleagues surveyed 90 patients with Rheumatoid Arthritis who were treated at their rheumatology clinic.¹

Nearly 50% of the patients with Rheumatoid Arthritis also tested positive for Lyme disease.

Survey results indicated, “The presence of Borrelia burgdorferi [the causative agent of Lyme disease] in patients with arthritis not only significantly reduced the motor activity of patients, but also complicated the mental adaptation to their own disease.”

The patients had high and moderate disease activity, significantly reduced physical activity, and body pain.

The quality of life of patients with Lyme arthritis and Rheumatoid Arthritis was worse due to severe joint pain and a greater degree of functional disorders compared to the patients with only Rheumatoid Arthritis.

The authors considered depression as a cause of the problem with Rheumatoid Arthritis. “Depression imposes a significant burden on the health-related quality of life, disability, and mortality of individuals with arthritis,” wrote the authors.

“Patients with [Lyme arthritis] have significantly lower MCS (mental component score) values, which is explained by the patients’ severe psychological adaptation to their own disease, given the prevalence of [Lyme disease] at the present and its tendency towards chronicity.”

The authors suggested that an active infection might be the cause of the mental health issues in individuals with these conditions. “We can speculate that the conscious that joints disease may be connected with infection not with the autoimmune disease caused a more depressive reaction.”

Editor’s note: I often see patients with both a rheumatologic condition and Lyme disease. I have had patients with Lyme disease whose symptoms were initially thought to be from a flare-up of the rheumatologic condition.

References:
  1. Yuskevych VV, Zhulkevych IV, Makhovska OS, Smiyan SI. Assessment of quality of life in patients with Lyme arthritis and rheumatoid arthritis. Reumatologia. 2022;60(1):35-41. doi:10.5114/reum.2022.114352

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For more:

http://

Practical TENS demonstration for RA in the hand

Our Public Health Officials Learned Their Lesson Through Lyme Disease

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/31167018

Our Public Health Officials learned their lesson through Lyme disease

Carl Tuttle

Hudson, NH, United States

DEC 16, 2022 — 

I would suggest you click on the “COVID-19: The Science We Should Know” link below to understand the truth that has been censored from the public.

Lyme was the precursor to the deliberate mishandling of the current pandemic. My statements below are supported through the embedded links.

———- Original Message ———-

From: CARL TUTTLE <runagain@comcast.net>
To: “Contact-Us@thenhf.com” <Contact-Us@thenhf.com>
Date: 12/15/2022 11:31 AM
Subject: Fwd: COVID-19: The Science We Should Know

The National Health Federation (Since 1955)

https://thenhf.com/

Contact-Us@thenhf.com

To whom it may concern;

I was forwarded the reference manuscript below and wanted to thank you for organizing its contents but I must tell you there is a global group of medically gaslighted patients infected through a hidden epidemic who have been sounding the alarm for decades. Our personal experiences with this growing epidemic gave us reason to question the false Covid narrative.

COVID-19: The Science We Should Know
https://thenhf.com/wp-content/uploads/2020/04/CV19_The_Science_We_Should_Know.pdf

I know you are busy so I do not want to overwhelm you with reference after reference. Two action items: please read my letter to the editor published in the BMJ, June 2020 and listen to the testimony from a clinician on the front lines who has witnessed it all from the very beginning.

1. Letter to the editor of the BMJ

https://www.bmj.com/content/369/bmj.m1041/rr-1

2. History of Lyme Disease by Joseph J. Burrascano, Jr. MD. (Video Testimony)

https://vimeo.com/306846706

-Joseph Burrascano, MD’s cogent history of Lyme: East Hampton, Long Island NY had the highest rate of Lyme in the world. 1965 internist Sidney Robin coined the term “Montauk Knee”

Summary for this communication:

The Lyme community has had decades of experience when it comes to public health and mismanagement of a disease. Refusing to acknowledge treatment failure following the one-size-fits-all IDSA guideline mandate along with suppressing mountains of scientific evidence identifying persistent Lyme infection has been the modus operandi of the Centers for Disease Control. The missing piece with Lyme however was the control of free speech from the “Lyme Loonies” a term coined by Philip Baker, NIH Program Officer for Lyme Disease and Anthrax Basic Research Programs.

Why would the CDC want to control the narrative you might ask? A chronic relapsing seronegative disease does not fit the business model of vaccine development, patent royalties and pharmaceutical profits so laboratory confirmation of persistent infection after antibiotic treatment must be squelched/suppressed at all costs.

So it would appear that our Public Health Officials learned their lesson through Lyme disease and upped the ante with Covid in an attempt once again to control the narrative but this time including the suppression/control of free speech through social media platforms which had proliferated the truth/facts/personal experiences of thousands regarding the devastating effects of Chronic Lyme Disease.

It should be blatantly obvious to everyone; pharmaceutical profits over lifesaving care.

Respectfully submitted,

Carl Tuttle
Hudson, NH

Change.org Lyme Petition:

Calling for a Congressional investigation of the CDC, IDSA and ALDF
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf

________________

**Comment**

I could not agree more.

A huge KUDOS to The National Health Federation (NHF) for their incredibly well-done paper “COVID-19: The Science We Should know.”

This important 395 page paper has everything you need to talk to others about the lunacy of the past two years.  All the science covering all the issues is right here, in one handy resource.

And yes, censorship is the last tool of tyrants but continues unabated.

Lyme May Help Ticks Survive

https://www.lymedisease.org/evolution-lyme-bacteria-in-ticks/

The bacteria that causes Lyme in humans doesn’t hurt ticks. In fact, it might help them survive.

Dec. 7, 2022

University of Rhode Island entomologist Jannelle Couret is tipping the way we understand the bacteria that causes Lyme disease.

Instead of looking at it from the human perspective, she and an interdisciplinary team of researchers are taking the view of the tick.

While the bacteria – Borrelia burgdorferi – is the pathogen that causes Lyme disease in humans, its presence is quite different in blacklegged ticks that pick up the bacteria from feeding on white-footed mice.

For the ticks, the bacteria doesn’t cause disease. It might even be beneficial.

For the next four years, Couret’s team will research the ecological factors driving the evolution of Borrelia burgdorferi in blacklegged ticks thanks to a $2.6 million grant from the National Institutes of Health.

The grant is part of the prestigious Ecology and Evolution of Infectious Disease (EEID) program, run by the NIH, National Science Foundation, and U.S. Department of Agriculture.

“I am really interested in the factors that are driving the tick populations,” said Couret, an assistant professor of biological studies and the principal investigator on the grant.

“Their populations vary year to year. Our preliminary data suggests that the survival of the ticks during some of their early life stages is improved based on whether they host these bacteria.”

All-female research team

For the four-year study, Couret is collaborating with Associate Professor Sukanya Narasimhan of Yale Medical School, Associate Professor Jean Tsao of Michigan State University, and Associate Professor Cynthia Lord of the University of Florida – along with postdoctoral, graduate and undergraduate trainees at each institution.

“One of my favorite aspects of this work is the research team. We are all women and three of us are women of color,” said Couret, who is part Indigenous, Afro-Cuban, and American. “I think that is – unfortunately – somewhat rare in science.”

Prof and grad student in a lab sorting tick samples
Couret (on the right) works with graduate student Samantha Schofield as they sort out tick samples. (URI photo/Nora Lewis)

Blacklegged ticks, also called deer ticks, carry seven known pathogens and are responsible for about 95% of the tick-borne diseases in the U.S., including about 30,000 cases of Lyme disease reported each year.

Deer ticks can acquire the bacteria that causes Lyme disease during any of its life stages – larvae, nymph or adult – during a blood meal from white-footed mice, the primary carriers of the Lyme disease bacterium.

(While the abundance of deer ticks is casually associated with deer, these hosts do not transmit Borrelia burgdorferi to ticks, and deer are not considered an important host for the maintenance of the bacteria in wildlife populations.)

Do ticks benefit from carrying infections?

But the bacteria doesn’t lead to Lyme disease in either the mice or the ticks. In pilot studies, Couret has seen changes in the ticks that acquire the bacteria – including behavior, metabolism, respiration, and survival. So there appears to be an advantage for those ticks, she said.

“That’s a shift in mindset,” said Couret, who joined URI in 2015 after earning her Ph.D. in the ecology of infectious diseases at Emory University.

“We mainly think of Borrelia burgdorferi as a pathogen because it causes Lyme disease in humans. We are studying the transmission cycle of the bacteria in nature between ticks and white-footed mice. It’s possible that it’s not acting as a pathogen, but rather as a beneficial symbiont of the tick, a partner. The bigger picture question is, if we view Borrelia burgdorferi with this lens, can we better understand its transmission dynamics?”

Environmental factors

In understanding the transmission cycle of Lyme disease, the researchers will explore the relationships of many influences on the bacteria in the tick, including environmental factors, such as temperature and humidity; ecological facets, such as the tick’s microbiome; and the bacteria’s interactions with other organisms in the tick.

“We’re studying the effects of the bacteria on ticks at different levels, from gene expression to behavior,’’ she said. “We’ll combine that information to look at the evolutionary fitness of ticks, and model the impacts of bacteria on annual tick populations. We also are considering the microbiome. We want a really comprehensive view of the ensemble of ecological interactions that influence ticks, Borrelia burgdorferi, and their partnership.”

For the study, Narasimhan, a molecular biologist, will look at gene expression to learn what is changing in the ticks that acquire the bacteria, along with what is changing in the bacteria.

Lord, a vector-borne disease modeler, will incorporate the experiment results in a model that can predict tick populations and rates of transmission of Borrelia burgdorferi.

Tsao, a tick ecologist, will study deer ticks in the Midwest, another hot spot of Lyme disease. Paralleling Couret’s work in Rhode Island, Tsao will study tick behavior and development in a semi-natural environment.

Tsao and Couret will also look at traits that may be affected by the presence of Borrelia burgdorferi, effects of environmental conditions, survival rates, and gene expression.

Learning ways to improve prevention

When it’s completed, the study will greatly expand our understanding of the factors driving the maintenance of Lyme disease in wildlife. Findings could eventually lead to ways to control the deer tick population or inform disease prevention measures, Couret said.

Also, by characterizing the role of the microbiome as it relates to tick-Borrelia interactions, the research could lead to novel methods of biological controls, such as finding competing bacteria within the tick that, when present, negatively impact Borrelia burgdorferi transmission.

A unique aspect of the grant is the heavy focus on providing comprehensive mentorship for trainees, centering the experiences of those who have been marginalized in science and supporting the team through professional development across all four institutions involved.

Called the Microbiome Integrated Tick Ecology Network – or MITEY Network, as in mites – the mentoring will send trainees to each partner university to sharpen science skills, promote sustainable and productive writing practices and science communication, support a growth mindset, and reduce imposter syndrome.

“We want to make sure it’s an inclusive research culture and environment for our trainees,” Couret said.

PRESS RELEASE SOURCE: University of Rhode Island

________________

**Comment**

Unfortunately the wrong things are emphasized in this article.  I don’t give a jot what gender, color, or beliefs researchers have and nobody else should either.  What we desperately need are good, unbiased, well designed research studies that help patients by giving real answers to real problems.  And true to form, this study, once again, while lining the pockets of researchers, most probably won’t help patients.  I realize I’ve grown quite skeptical, but we need accurate tests, treatments, and transmission studies.  Period.  

We need mainstream medicine and public health to accept the fact this is a relapsing illness that persists and sequesters inside the body.

Until these foundational, fundamental issues are addressed and resolved, everything else is moot.

For a deeper dive and excellent read into the topic of the interplay between Bb and ticks:  https://www.linkedin.com/pulse/lyme-disease-ticks-borrelia-co-conspirators-john-eoin-healy

Important excerpt:

Quite a bit of research has already been done on this subject with regard to Ixodes ricinus – the European vector of Lyme and a species that is very closely related to the east coast U.S. tick Ixodes scapularis – the black-legged tick. 

Also see:  https://academic.oup.com/jme/article/47/6/1196/996195

Important excerpts, showing this is not a new idea:

Survival rate of nymphal and adult I. ricinus was significantly enhanced by infection by B. burgdorferi s.l. (χ2: nymph, P = 0.008; adult, P = 0.021).

Moreover, ticks infected by B. afzelii survived better than other ticks (infected by other genospecies or not). The results here indicate that infection by B. burgdorferi s.l., and more specifically infection by B. afzelii, confers survival advantages to I. ricinus under challenging thermohygrometric conditions.

https://www.nature.com/articles/s41579-020-0400-5

Important excerpt showing that Bb also relies upon the tick for survival:

The spirochaete relies heavily on its arthropod host for basic metabolic functions and has developed complex interactions with ticks to successfully colonize, persist and, at the optimal time, exit the tick. For example, proteins shield spirochaetes from immune factors in the bloodmeal and facilitate the transition between vertebrate and arthropod environments. 

So we already know that the relationship between ticks and pathogens is beneficially symbiotic.
For the love of God, can we please move on to accurate testing, effective treatments, and transmission studies?