Archive for the ‘research’ Category

Podcast: Medical Gaslighting, Human Rights, and Lyme Disease

https://www.lymedisease.org/podcast-gaslighting-lyme/

PODCAST: Medical gaslighting, human rights, and Lyme disease

By Fred Diamond

May 1, 2024

When I was researching my book “Love, Hope, Lyme: What Family Members, Partners, and Friends Who Love a Chronic Lyme Survivor Need to Know,” I had no idea that medical gaslighting was something that persistent Lyme survivors had to commonly deal with.

I also had no idea that gaslighting was emblematic of the human rights challenges Lyme survivors have historically dealt with when seeking medical treatment.

I met hundreds of Lyme survivors who shared stories about being dismissed, mocked, and disbelieved by dozens of doctors.

Unfortunately, this gaslighting led to family members disbelieving that their loved ones had the disease, which led to further detachment, alienation, and suffering.

The patient experience

A peer-reviewed, international medical article was published in the journal Healthcare in 2023 called Medical Gaslighting and Lyme Disease: The Patient Experience. I interviewed the authors of the report, Jennifer Fagen, PhD, and Jeremy Shelton, PhD, both from Lamar University in Texas, and Human Rights Advocate Jenna Luché-Thayer, on two episodes of the Love, Hope, Lyme podcast.

The article states “Lyme disease is a recognized public health threat and is a designated notifiable disease. As such, Lyme disease is mandated to be reported by the CDC. Despite this, both acute and chronic Lyme disease have been relegated to the category of ‘contested illnesses’ which can lead to medical gaslighting.

“By analyzing results from an online survey of respondents with Lyme disease, 986 people, we elucidate the lived experiences of people who have been pushed to the margins of the medical system by having their symptoms attributed to mental illness, anxiety, stress, and aging. Further respondents have had their blood tests and rashes discounted and were told that chronic Lyme disease simply does not exist. As a result, a series of fruitless consultations often result in the delay of a correct diagnosis, which has deleterious consequences.”

Challenges with contested illnesses

According to Dr. Fagen, “Contested illnesses are conditions that lack cultural legitimacy as their nature and even their existence is often questioned. Any physical manifestations or symptoms may be deemed purely subjective as they lack objective biological markers. The result is that patients are in the unfortunate position of having to convince medical practitioners that they’re in need of medical attention, often leading to seeing many doctors before receiving a proper diagnosis.

“People with contested illnesses might not qualify for disability, despite their inability to work. Insurance may not cover their treatments and they could be denied the social recognition of their condition.”

She continued, “Despite the fact that there is such a high incidence of them in the US and internationally, and because they often have objective biological markers, such as blood tests and the EM or bullseye rash, it’s really quite counterintuitive that they are considered contested illnesses.”

Ignoring symptoms

The article discussed the wide range of gaslighting techniques used by doctors.

“The most common one by far was doctors just telling their patients, ‘You’re just overreacting to these symptoms,’ which is unfortunate because it doesn’t really address those symptoms at all. It essentially ignores them. Other reactions that we found that were common were implying that the symptoms were psychosomatic,” said Dr. Shelton.

He continued, “Many patients were told there’s just no such thing as chronic Lyme disease. A few people were told that it was fairly common that their symptoms were due actually to mental illness. It’s one thing to say it’s psychosomatic, but it’s a whole other category to say that you actually are suffering from some sort of mental illness.”

“Others were commonly told that their symptoms were due to stress. The common theme that you can see here is that doctors were trying to argue either the symptoms were due to some other cause besides Lyme disease, or that the symptoms were entirely fictitious and just in the person’s head, or they should just learn to live with those symptoms. Of course, that’s not what you want to hear when you go to a medical professional,” Dr. Shelton continued.

Lyme disease and human rights violations

Jenna Luché-Thayer put the findings in the article in the context of the human rights framework. On a special follow up episode of the podcast, she discussed the role of the World Health Organization (WHO) in developing medical codes that are linked directly to how insurance recognizes and reimburses their medical care and how governments track diseases.

She said, “If there is not a [WHO] code for a particular illness or disease or medical condition, it’s very hard to get the recognition, research, financial support, insurance support, Medicare, and Medicaid support to take care of the illness.”

Luché-Thayer formed a voluntary, nonprofit international organization that petitioned the World Health Organization and documented the science as well as the human rights violations related to Lyme disease. WHO expanded the codes to include multiple medical conditions that are caused by Lyme disease, including dementia, demyelinating conditions, Lyme carditis, and the ophthalmic complications from it.

“This is now part of the medical system that’s being integrated across the United States and other countries. People understand the importance of knowing their codes and bringing these codes to the attention of their medical providers. That means that the medical providers understand these codes have been validated, and it greatly helps to validate the multiple complications and chronic conditions disabling and potentially fatal complications from Lyme disease,” said Luché-Thayer.

Lyme survivors had their human rights compromised for decades. On the podcast, we discussed the extremes this might lead to.

“One of the key human rights is the highest attainable standard of health. If you are denied diagnosis and you are being denied treatment, clearly your health human rights are being violated,” she said. “If you are being told, as in a gaslighting situation, that you are not sick, when in fact you are infected with a bacteria that’s going throughout your body, your right to information is being denied. If you are a Lyme patient who has been told that not only are you not sick, but we think you need to go into psychiatric care, and you’re forced into a psychiatric care, then your personal security, which is also another human right, is being violated.”

Using the article for self-advocacy

Dr. Fagen said that one of the survey’s findings is that a patient’s positive blood test did not always influence how likely a doctor was to believe they have Lyme disease. On average, almost 14 doctors were seen prior to receiving a Lyme disease diagnosis. The article can be used as a tool for self-advocacy. (Download the article here.)

“It is important for patients to bring research with them to doctors’ appointments. This article not only contains a good deal of data from peer-reviewed medical journals that validate the existence of chronic Lyme disease, but it also provides data regarding the incidents and types of Lyme disease in our respondent pool. The latter can potentially encourage medical practitioners’ self-reflection if they are employing such techniques,” she said.

Dr. Fagen continued, “It’s also important for Lyme patients to know that these experiences are not uncommon, so they’d be less likely to doubt themselves. We’ve shared the research among medical doctors far and wide globally, including medical doctors who treat Lyme disease and other medical doctors who could perhaps benefit from some education about Lyme disease and Lyme patients’ experiences. We hope this accomplishes those goals.”

Click here to listen to all episodes of the Love, Hope, Lyme Podcast or on YouTube.

Fred Diamond is based in Fairfax, Virginia and can be contacted via Facebook. His popular book, “Love, Hope, Lyme: What Family Members, Partners, and Friends Who Love a Chronic Lyme Survivor Need to Know” is available on Amazon. The e-version of the book is always free to Lyme survivors. PM Fred on Facebook for your copy.

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Category:

Activism, Lyme, Psychological Aspects, research

Post-COVID Reactivation of Latent Bartonella: A Case Report & Literature Review

https://bmcinfectdis.biomedcentral.com/articles/10.1186/s12879-024-09336-7

Case Report

Open access

Published: 

Post-COVID reactivation of latent Bartonella henselae infection: a case report and literature review

Yanzhao Dong, Ahmad Alhaskawi, Xiaodi Zou, Haiying Zhou, Sohaib Hasan Abdullah Ezzi, Vishnu Goutham Kota, Mohamed Hasan Abdulla Hasan Abdulla, Alenikova Olga, Sahar Ahmed Abdalbary & Hui Lu

BMC Infectious Diseases volume 24, Article number: 422 (2024) Cite this article

Abstract

Cat scratch disease (CSD) is caused by Bartonella henselae (B. henselae) and presents as lymphadenopathy following close contact with cats. However, in context of the global COVID-19 pandemic, clinical manifestations of CSD may vary, posing new challenges for healthcare professionals. Here we describe a case of a 54-year-old male with painful left upper arm mass, which gradually resolved until he was infected with COVID-19. The mass then rapidly progressed before admission. Meanwhile, pulmonary symptoms including pleural effusion emerged simultaneously. The cause was undetermined with routine blood culture and pathological test until the next generation sequencing (NGS) confirmed the presence of B. henselae. We believe this case is the first to report localized aggravation of CSD after COVID-19 infection and hopefully, offers treatment experience for clinicians worldwide.

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**Comment**

On a personal note: both my husband and I required Bartonella treatment for a relapse after COVID.  What the abstract does not mention is if this patient received the mRNA gene therapy shot which would complicate matters even more. Since his presentation was in January of 2023, he very well could have had multiple shots.

While the case report was about a severe Bartonella manifestation, please know Bartonella can present a million different ways.  Please read:  https://madisonarealymesupportgroup.com/2019/04/24/human-bartonellosis-an-underappreciated-public-health-problem/

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Category:

Bartonella, research, Treatment, Viruses

Lyme Disease Causes Diaphragm Paralysis, Resulting in Breathing Problems

https://danielcameronmd.com/lyme-disease-diaphragm-paralysis-breathing-problems/

LYME DISEASE CAUSES DIAPHRAGM PARALYSIS, RESULTING IN BREATHING PROBLEMS

lyme-disease-breathing-problems

In a letter to the editor, entitled “Atypical presentation of Lyme disease,” Jarosińska and colleagues describe a unique case of a diaphragm paralysis caused by Lyme disease. [1]

By 

According to the authors, diaphragm paralysis as a complication of Lyme disease was first reported in 1986. Since then, there have only been 4 cases involving bilateral paralysis of the diaphragm, which can cause breathing problems in patients.  “… the presented case will be the fifth described case of bilateral diaphragmatic paralysis in the course of probable Lyme neuroborreliosis.”

Patients with this condition experience weakness of the diaphragm and “have reduced breathing capabilities or are unable to control their voluntary breathing. They also have difficulty maintaining adequate gas exchange, as the lungs are not able to inhale and exhale outside air as efficiently.”²

Lyme disease causes breathing problems

A 64-year-old man exhibited symptoms of acute respiratory failure when lying on his back and complained of dyspnea, breathing difficult during sleep, and pain in the cervical spine, which had been ongoing for about one month.

“Upon admission, physical examination revealed tachypnea, a thoracic breathing pattern, and increased respiratory effort with the activation of accessory respiratory muscles, without any signs of an acute respiratory infection,” the authors state.

A cardiac exam revealed bilateral phrenic nerve palsy and the patient was transferred to the neurology department for further testing, which revealed no significant abnormalities.

Infectious Disease Testing

“The diagnostic process was broadened and serological analysis was carried out to test for a number of antibodies,” including those specific to Lyme disease, the authors state.

Test results were positive for Lyme disease. However, there was no history of a tick bite.

“Hence, the patient was diagnosed with bilateral phrenic nerve palsy in the course of probable Lyme neuroborreliosis,” the authors state.

The patient was treated with IV ceftriaxone, followed by oral doxycycline.

“During the hospitalization, partial clinical improvement was achieved and the patient was discharged home in a stable condition without any respiratory support.”

According to the authors, “palsy of the phrenic nerve in the course of [Lyme neuroborreliosis] is a rare and unique symptom.”

However, “it seems reasonable to consider serological diagnostics for Lyme disease in patients with diaphragmatic paralysis of undetermined etiology.”

References:
  1. Jarosińska A, Pilśniak A, Cieśla-Fuławka A, Dziubak W, Siuda J, Holecki MT. Atypical presentation of Lyme disease. Arch Med Sci. 2024 Jan 18;20(1):344-347. doi: 10.5114/aoms/175494. PMID: 38414461; PMCID: PMC10895935.
  2. Columbia University, Department of Surgery. https://columbiasurgery.org/conditions-and-treatments/diaphragmatic-weakness-paralysis

Category:

Lyme, research

Antibodies to Borrelia Burgdorferi and Bartonella Species in Serum and synovial fluid From People With Rheumatic Diseases

https://www.researchgate.net/publication/378974250_Antibodies_to_Borrelia_burgdorferi_and_Bartonella_species_in_serum_and_synovial_fluid_from_people_with_rheumatic_diseases

Antibodies to Borrelia burgdorferi and Bartonella species in serum and synovial fluid from people with rheumatic diseases

March 2024

Microbiology Spectrum 12(4):e0165323

DOI:10.1128/spectrum.01653-23

License  CC BY 4.0

Authors:
Lisa Kim
Erin Lashnits
Edward B Breitschwerdt
Amanda Elam

Abstract and Figures

Vector-borne infections may underlie some rheumatic diseases, particularly in people with joint effusions. This study aimed to compare serum and synovial fluid antibodies to B. burgdorferi and Bartonella spp. in patients with rheumatic diseases. This observational, cross-sectional study examined paired synovial fluid and serum specimens collected from 110 patients with joint effusion between October 2017 and January 2022. Testing for antibodies to B. burgdorferi (using CDC criteria) and Bartonella spp. via two indirect fluorescent antibody (IFA) assays was performed as part of routine patient care at the Institute for Specialized Medicine (San Diego, CA, USA). There were 30 participants (27%) with positive two-tier B. burgdorferi serology and 26 participants (24%) with IFA seroreactivity (≥1:256) to B. henselae and/or B. quintana. Both B. burgdorferi IgM and IgG were detected more frequently in synovial fluid than serum: 27% of patients were either IgM or IgG positive in synovial fluid, compared to 15.5% in serum (P = 0.048). Conversely, B. henselae and B. quintana antibodies were detected more frequently in serum than synovial fluid; overall only 2% of patients had positive IFA titers in synovial fluid, compared to 24% who had positive IFA titers in serum (P < 0.001). There were no significant associations between B. burgdorferi or Bartonella spp. seroreactivity with any of the clinical rheumatological diagnoses. This study provides preliminary support for the importance of synovial fluid antibody testing for documenting exposure to B. burgdorferi but not for documenting exposure to Bartonella spp.
IMPORTANCE This study focuses on diagnostic testing for two common vector-borne diseases in an affected patient population. In it, we provide data showing that antibodies to B. burgdorferi, but not Bartonella spp., are more commonly found in synovial fluid than serum of patients with joint effusion. Since Lyme arthritis is a common—and sometimes difficult to diagnose—rheumatic disease, improving diagnostic capabilities is of utmost importance. While our findings are certainly not definitive for changes to practice, they do suggest that synovial fluid could be a useful sample for the clinical diagnosis of Lyme disease, and future prospective studies evaluating this claim are warranted.
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Category:

Bartonella, Lyme, research, Testing

Another Study: Human-Caused Carbon Emissions Have No Discernible Effect on Climate

https://www.naturalnews.com/2024-04-16-carbon-emissions-no-discernible-effect-climate-study

Human-caused carbon emissions have no discernible effect on climate, study finds

04/16/2024 // Ethan Huff
Despite lots of very loud and very influential people claiming otherwise, the so-called  “carbon emissions” caused by humans is “non-discernible,” to quote a prominent researcher, when it comes to having an impact on the climate.

Demetris Koutsoyiannis, a professor in Greece, published a paper recently that explains using scientific data how the expansion of a more productive biosphere is responsible for increased carbon dioxide (CO2) concentrations in the atmosphere, which have thus created a “greening” effect on the earth.

While the official story is that most, if not all, of the recent alleged planetary “warming” is caused by the four percent human contribution of burning hydrocarbons, Koutsoyiannis says this is nonsense, according to actual science.

There is no “climate emergency,” nor are humans responsible for destroying the earth with industry. While certain elements of industry could certainly be cleaned up to produce less pollution, the idea that human activity is causing the planet to boil to death is simply ludicrous.  (See link for article & study)

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**Comment**

Virtually every study on Lyme disease and ticks now has the ‘climate change’ narrative embedded within.  This is important to note and refute.  According to independent research, ticks are highly ecoadaptive and simply go under leaf litter or snow to survive another day.  They also have an anti-freeze type substance in them that allows them to survive harsh conditions.

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The real problem?  Climate engineering.

For more on that:

Category:

Activism, Climate, Lyme, research, Ticks