Archive for the ‘Lyme’ Category

Lyme Disease is Associated With Various Sleep Disorders

https://danielcameronmd.com/lyme-disease-sleep-disorders/

LYME DISEASE IS ASSOCIATED WITH VARIOUS SLEEP DISORDERS

woman awake in bed with lyme disease and a sleep disorder

Patients with post-treatment Lyme disease syndrome (PTLDS) may experience sleep disturbances, according to a study by Johns Hopkins University School of Medicine. Researchers found,

“PTLDS participants reported significantly worse global sleep and sleep disturbance scores and worse fatigue, functional impact, and more cognitive-affective depressive symptoms compared to poor-sleeping controls.” [1]

By

Dr. Robert Bransfield, a New Jersey-based psychiatrist who specializes in the diagnosis and treatment of tick-borne illnesses, has seen a broad range of sleep disturbances in Lyme disease patients treated at his practice. He describes the various sleep disorders in the article “Neuropsychiatric Lyme Borreliosis: An Overview with a Focus on a Specialty Psychiatrist’s Clinical Practice.” [2]

The patients experienced:

  • Non-restorative sleep
  • Early insomnia
  • Middle of the night insomnia
  • Early morning insomnia
  • Excessive daytime sleepiness
  • Loss or reversal of circadian rhythm
  • Restless leg
  • Paroxysmal nocturnal limb movements
  • Sleep apnea (central and/or obstructive)
  • Sleep paralysis
  • Hypnagogic hallucinations
  • Sleep attacks
  • Cataplexy
  • Narcolepsy

The combination of “non-restorative sleep and chronic unremitting stress appear to play a significant role in disease progression,” explains Bransfield.

“Both non-restorative sleep and the chronic unremitting stress seen in these chronically ill patients contribute to disease perpetuation and progression and are associated with fatigue, cognitive impairments, decreased regenerative functioning, compromised immunity, decreased resistance to infectious disease and neurodegenerative processes,” he writes.

Editor’s note: I have also found that Lyme disease patients can suffer from a broad range of sleep issues. However, it can be difficult to determine whether Lyme disease or a comorbidity is responsible for the sleep disturbance. I have found that antibiotic treatment often improves sleep disorder symptoms.

Related Articles:

Poor sleep quality in Lyme disease patients

16-year-old boy with Lyme disease presenting as depression

References:
  1. Weinstein ER, Rebman AW, Aucott JN, Johnson-Greene D, Bechtold KT. Sleep Quality in Well-defined Lyme Disease: A Clinical Cohort Study in Maryland. Sleep. 2018.
  2. Bransfield RC. Neuropsychiatric Lyme Borreliosis: An Overview with a Focus on a Specialty Psychiatrist’s Clinical Practice. Healthcare (Basel). 2018;6(3).
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Chronic lack of sleep is a terrible thing.  Parasites notoriously cause insomnia.  Appropriate treatment for infection(s) is the most important step but often times other adjunctive therapies are needed as well.

Category:

Lyme, research, Sleep

Mid-Ohio Valley Sees Rise in Lyme Disease

https://www.newsandsentinel.com/news/community-news/2020/09/mid-ohio-valley-sees-rise-in-lyme-disease/

Mid-Ohio Valley sees rise in Lyme Disease

Parkersburg resident Kristin Carvell inspects her dog Siren for ticks after a walk at City Park. (Photo Provided)

PARKERSBURG — Despite summer being over, warm weather and ideal circumstances for ticks remain and it is important to understand the potential consequences of bites.

According to the Mid-Ohio Valley Health Department, lyme disease cases have been on the rise in the region.

(See link for article)

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**Comment**

Remember ticks are in many other places besides wooded and grassy areas. Migrating birds drop them virtually anywhere. Also remember that Lyme is just the ‘tip of the spear’ and numerous pathogens can be transmitted simultaneously in a singular tick bite.

Reports have come in from around the world announcing the unabated spread of ticks and Lyme/MSIDS yet virtually nothing has changed in Lyme-land. Doctors still utilize abysmal testing, are uneducated on tick-borne illness – misdiagnosing a majority of patients, utilize ineffective treatment, and abuse patients by not listening to them and labeling them hypochondriacs.

Category:

Activism, Lyme, Ticks

Veterinary Nurse Tells of Long Road to Lyme Disease Diagnosis

https://www.agriland.ie/farming-news/veterinary-nurse-tells-of-long-road-to-lyme-disease-diagnosis/

Veterinary nurse tells of long road to Lyme disease diagnosis

Caroline Allen
Veterinary nurse tells of long road to Lyme disease diagnosis

A veterinary nurse has told how her road to diagnosis for chronic Lyme disease took almost two years and 22 doctors, including consultant visits.

Siobhan Coleman, a native of Listowel, Co. Kerry, who has worked as a veterinary nurse for over 20 years, was finally diagnosed as having Lyme disease in 2017 after what she said were several medical misdiagnoses.

The former senior head nurse of two equine hospitals in Co. Kildare has been supported by her husband Eamonn in her battle to get a correct diagnosis after being severely neurologically affected. She is now passionate about creating awareness of Lyme disease and working for patient advocacy. (See link for article)

_______________________

**Comment**

Siobhan states what so many patients have experienced:

“I was forced to become my own health advocate after several medical misdiagnoses. I don’t recall the distinct ‘bullseye rash’ despite being symptomatic of the disease,” Siobhan said.

Ireland also suffers with the same issues we all do:
  • the tests are abysmal
  • the reported numbers don’t accurately reflect reality
  • the majority of doctors are uneducated about tick-borne illness (despite it being around for over 40 years)

She, like so many, used a smaller CLIA-certified lab that specializes in tick borne illness, but that ultimately a clinical diagnosis is made based on symptoms.

Interestingly, these smaller labs have been vilified by the CDC and IDSA.  Could this be because these people have a financial conflict in that they own patents on the tests?  I appears so.

https://madisonarealymesupportgroup.com/2019/06/28/who-owns-the-elisa-patents/

For those in Ireland, she directs them to Tick Talk Ireland (a great resource):  https://www.ticktalkireland.org

Category:

Activism, Lyme

Where’s the Manhattan Project to Find a Lyme Disease Cure?

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

Where is the GOVERNMENT DRIVEN MANHATTAN PROJECT to find a cure?

iu-82

OCT 1, 2020 — 

Please see the letter below regarding Dr. Horowitz’s recent laboratory findings on the effects of dapsone and intracellular antibiotics as a possible treatment for this antibiotic resistant/tolerant superbug responsible for chronic Lyme disease.

———- Original Message ———-

From: CARL TUTTLE <runagain@comcast.net>
To: “tickbornedisease@hhs.gov” <tickbornedisease@hhs.gov>
Cc: (97 Undisclosed recipients)
Date: 10/01/2020 8:51 AM
Subject: Effect of dapsone alone and in combination with intracellular antibiotics against the biofilm form of B. burgdorferi

To the Tick-Borne Disease Working Group,

When will our public health officials stop denying that we’re dealing with an antibiotic resistant/tolerant superbug?

Where is the GOVERNMENT DRIVEN MANHATTAN PROJECT to find a cure?  BMC Research Notes

Published: 29 September 2020

Effect of dapsone alone and in combination with intracellular antibiotics against the biofilm form of B. burgdorferi

Richard I. Horowitz, Krithika Murali, Gauri Gaur, Phyllis R. Freeman & Eva Sapi

https://bmcresnotes.biomedcentral.com/articles/10.1186/s13104-020-05298-6

Excerpt:

Several theories to explain persistent symptoms have been suggested, including immune evasion in privileged sites [14], antigenic variation [15], persistent antigenic stimulation [16], biofilm formation [17, 18] and B. burgdorferi persister cells, a highly resistant bacterial form which may protect the bacteria from antibacterial therapy. B. burgdorferi can exist in spirochetal, round body forms, intracellularly, as well as in newly discovered biofilm forms [4, 19,20,21,22,23,24,25,26,27,28,29]. Previous data suggested that standard and some newly discovered antibiotics for Lyme disease can be very effective in eliminating spirochetal, round body, intracellular and antibiotic tolerant persister cells [4, 20, 25,26,27] but have little effect on biofilm forms [24, 30]. Persisters are multi-drug tolerant cells present in significant numbers in biofilms [27, 29], and the importance of Borrelia biofilms has been highlighted in autopsy tissues from a well-documented Lyme disease patient [31]. Therefore, to successfully treat Lyme disease, there is an urgent need to find an agent or combination of antimicrobial agents which can efficiently eliminate resistant biofilm forms of B. burgdorferi.

Carl Tuttle

Lyme Endemic Hudson, NH

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**Comment**

Unfortunately, mainstream medicine denies borrelia is pleomorphic & persistent, and calls it ‘quack’ science. This polarization has continued unabated since the 80’s when the Bayh Dole Act was passed authorizing federal agencies to grant exclusive licenses to inventions owned by the federal government.[7]  Since that time, those entrusted with public health have vested financial interests in the form of patents.  At the same time, monies for research came more and more from the federal government – creating an unholy alliance between the government, research institutions, and manufacturing.  This is the corrupted root that has now given way to politicized science that is dominating the research world.

The denial and conflicts have been felt by thousands upon thousands of Lyme/MSIDS patients as well as doctors who defy the narrative.

http://  Approx. 4 Min.

Leonard Hayflick – The Impact of the Bayh-Dole Act

I’m about 75% done with Polly Murray’s, “The Widening Circle,” which details her family’s experience with tick-borne illness as well as the early history of Lyme.

I must admit the information makes me even more frustrated over the lack of response to this debilitating illness.  It’s been over 40 years and yet the polarizing controversy continues and we have so little to show for something that is debilitating/killing people.

I plan to write a summary of the book when I’m through but it’s a whopper and almost familiar in that her litany of symptoms experienced by her ENTIRE family takes me back to my own bitter journey.  If you haven’t read her book, I highly recommend it.  But, prepare to be frustrated!

Category:

Activism, Lyme

Ticktective Podcast & Video Series

https://www.bayarealyme.org/blog/ticktective-podcast/

| NewsBy Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

Media Contact:
Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com

Bay Area Lyme Foundation Launches Ticktective™ Podcast

PORTOLA VALLEY, Calif., September 30, 2020 — Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, announces the launch of the Ticktective podcast and video series.  Ticktective is a Bay Area Lyme Foundation program designed to investigate the latest scientific knowledge and advances in Lyme and tick-borne diseases. The podcast offers insightful discussion with researchers, physicians, patients, and thought leaders in the field.

“Because the science surrounding tick-borne disease is so complex and there are so many unanswered questions, Ticktective aims to share firsthand perspectives about the challenges of Lyme in ways that will intrigue more scientists, physicians and patients to join our battle towards making Lyme disease easy to diagnose and simple to cure,” said Linda Giampa, executive director, Bay Area Lyme Foundation.

There are more than 400,000 people diagnosed with Lyme disease each year in the US, and millions of Americans live with persistent Lyme disease (PLD) caused by an ongoing bacterial infection. The current “gold standard” diagnostic for Lyme disease misses up to 60% of cases of early stage Lyme disease, and if not treated promptly, Lyme may progress to a debilitating stage, becoming difficult, or impossible, to cure. Bay Area Lyme Foundation has funded over 100 research projects at 37 institutions across the US in a mission to find solutions for these patients.

“I’ve always had an insatiable curiosity, and my own diagnosis of Lyme disease has driven me to use this curiosity to find answers that will help lead to solutions for all tick-borne diseases,” said Ticktective host Lia Gaertner, who is the director of education and outreach for Bay Area Lyme Foundation and holds degrees in environmental science and ethnobotany.

Initial Ticktective interviews include conversations addressing the challenges of developing a diagnostic for Lyme disease, the scientific techniques being used to overcome these challenges, what motivates researchers taking on this challenge, and the frustration of patients.

  • 2020 Emerging Leader Award Winner Jacob Lemieux, MD, DPhil of Harvard University discusses the similarities and difference of Lyme disease and malaria, the promise of next-generation sequencing for developing a diagnostic, his lab’s role in COVID-19 research, and the intersection of COVID-19 and Lyme disease.
  • 2020 Emerging Leader Award Winner Artem Rogovsky, DVM, PhD of Texas A&M University discusses what he learned from radioactive ticks, why he is aiming to develop a direct diagnostic for Lyme, and how a conversation at a kids’ birthday party ignited the innovative idea for this diagnostic concept.
  • Liz Horn, PhD, MBI is principal investigator for the Lyme Disease Biobank, which aims to enable and accelerate research by providing scientists with the biological samples needed to conduct important experiments. The Biobank has enrolled over 900 participants and currently supports more than 55 research projects.
  • Singer-songwriter Dana Parish, who not only has numerous chart-topping singles, but has also become a strong advocate for people with Lyme disease after a tick bite in 2014 that progressed to a persistent infection despite antibiotic treatment. She discusses how she is “fighting the good fight,” and making progress in her personal battle and for the cause.

“I was driven to become a songwriter as I wanted to make people feel understood, knowing that the best songs are personal yet universal. With that same spirit, it’s been vital to me to use my voice to be honest about what I’ve learned about the travesty of tick-borne diseases. In an area of medicine filled with misinformation, Ticktective is bringing valuable insights and help straight to the Lyme community. I’m thrilled to have had the opportunity to share my Lyme experience with listeners of Ticktective,” said Parish, whom Gaertner refers to as a fierce champion for the under-represented Lyme community.

Listen to the Ticktective podcast here. Check out other resources of Bay Area Lyme Foundation, including printable fact sheets, videos, educational tools and more, and follow us on and Facebook, Twitter, LinkedIn and Instagram.

About Lyme Disease
The most common vector-borne infectious disease in the country, Lyme disease is a potentially disabling infection caused by bacteria transmitted through the bite of an infected tick to people and pets. If caught early, most cases of Lyme disease can be effectively treated, but it is commonly misdiagnosed due to lack of awareness and unreliable diagnostic tests. There are more than 400,000 new cases of Lyme disease each year, according to statistics released in 2018 by the CDC. As a result of the difficulty in diagnosing and treating Lyme disease, more than one million Americans may be suffering from the impact of its debilitating long-term symptoms and complications, according to Bay Area Lyme Foundation estimates.

About Bay Area Lyme Foundation
Bay Area Lyme Foundation, a national organization committed to making Lyme disease easy to diagnose and simple to cure, is a leading public not-for-profit sponsor of innovative Lyme disease research in the US.  A 501c3 non-profit organization based in Silicon Valley, Bay Area Lyme Foundation collaborates with world-class scientists and institutions to accelerate medical breakthroughs for Lyme disease. It is also dedicated to providing reliable, fact-based information so that prevention and the importance of early treatment are common knowledge. A pivotal donation from The LaureL STEM Fund covers overhead costs and allows for 100% of all donor contributions to Bay Area Lyme Foundation to go directly to research and prevention programs. For more information about Lyme disease or to get involved, visit www.bayarealyme.org or call us at 650-530-2439.

Category:

Activism, Lyme, research, Ticks