Archive for the ‘Lyme’ Category

The Evidence for Persistent Lyme & Promising New Treatments

https://www.lymedisease.org/embers-persistent-lyme/

The evidence for persistent Lyme and promising new treatments

by Kris Newby
Communications Director, Invisible International

Monica Embers, PhD, director of the vector-borne disease research center at Tulane University School of Medicine, summarizes evidence that suggests that Lyme bacteria can survive long after standard treatment protocols in a new online medical education course. She also discusses promising new treatment strategies for eradicating these bacteria.

Emerging evidence from animal studies suggest that the Lyme disease bacterium, Borrelia burgdorferi, is a clever trickster that uses multiple strategies to evade the immune system and survive long after an onslaught of the recommended course of antibiotics. This begs the question—Are our current Lyme treatment protocols all wrong?

In the accredited continuing medical education course, “Antibiotic efficacy for treatment of Lyme disease,” Monica Embers, associate professor of microbiology and immunology and a leading expert in investigating B. burgdorferi infections in a nonhuman primate model, summarizes current Lyme treatment protocols, key studies on antibiotic efficacy, and new strategies aimed at curing the infection.

“It’s clear from the cumulative evidence that persistent Lyme disease is a common occurrence and that we urgently need to explore more effective treatment strategies,” said Embers.

This new 32-minute course, part of Invisible International’s Montecalvo Platform for Tick-Borne Illness Education, has been approved for 0.5 CME credit by the American Academy of Family Physicians. Each CME course includes a list of studies cited in the lecture.

Doxycycline doesn’t clear Lyme bacteria

One of the more surprising revelations in the lecture is that doxycycline, the drug of choice for treating adults with Lyme disease, doesn’t clear all of the causative bacteria. It only slows their proliferation, disrupting cell-wall creation as each forms a copy of itself by splitting into two. When the Lyme bacteria sense doxycycline, they shapeshift into spherical, dormant forms called persister cells, so they can wait out the chemical storm.

Dr. Embers backs up these claims with a series of thoughtfully designed experiments on nonhuman primates, our closest mammalian relatives. In one study, she treated five rhesus macaques with a 28-day course of doxycycline and five without. A year after the trial began, nine out of the 10 macaques, both treated and untreated, showed signs of ongoing illness and live Lyme spirochetes were isolated. In addition, those that received doxycycline had more bacteria in the brain.

The study’s conclusion:

“We observed evidence of persistent, intact, metabolically-active B. burgdorferi after antibiotic treatment of disseminated infection and showed that persistence may not be reflected by maintenance of specific antibody production by the host.”

Simply put, treating with doxycycline didn’t seem to be a cure, and the Lyme bacteria appear to have ways of suppressing antibody production so that it can fly under the radar of the immune system.

Given this evidence, why does the medical establishment still recommend doxycycline as a front-line Lyme treatment? One reason is that doxycycline appears to be effective at most early infections, along with Rocky Mountain Spotted Fever and anaplasmosis, other serious tick-borne diseases that are often mistaken for Lyme disease in the early stages.

Overuse of mice as test subjects?

Embers also says that treatment study results may be skewed by the overuse of mice as test subjects. Mice are cheap, but they’re lousy stand-ins for humans. They’ve evolved alongside ticks to serve as a living holding tanks for the Lyme bacteria, so they don’t get as sick as humans when infected.

Lyme disease is the fastest vector-borne illness in the United States, with an estimated 476,000 new cases a year, according to the Centers for Disease Control. Approximately 10 to 20% of those treated with antibiotics go on to experience disabling long-haul symptoms, such as severe fatigue, joint/muscle pain, brain fog, and neurologic symptoms.

There have been no human treatment studies published in over 20 years, and only 0.30% of the National Institutes of Health Lyme research budget has been focused on human treatment studies in the last five years (2015-2019).

At the end of lecture, Dr. Embers cited several lab studies (bacteria-in-a-dish) and animal studies showing that a cocktail of three antibiotics are highly effective in eradicating the Lyme bacteria. (This study from Johns Hopkins found that a combination of daptomycin, cefoperazone and doxycycline was effective in eradicating persister cells.) But of course, clinical trials are needed to validate these findings.

Tick Bytes

One of the ways Invisible International is working to accelerate the movement of treatment evidence to patient care is by launching Tick Bytes, a centralized clinical data repository that provides quality de-identified tick-borne illness patient data to researchers nationwide.

Researchers can mine this data using advanced biostatistical methods to discover symptom profiles for mixed infections and treatment regimens that work. With this precision medicine approach, more quality evidence will reach physicians, insurers, and the government. This in turn will improve diagnostics and treatment options, leading to better outcomes, insurance coverage, and more sophisticated understanding of tick-borne diseases. Invisible is currently looking for funding for 10 data collection sites.

Dr. Embers’ CME course was funded by the Montecalvo Platform for Tick-Borne Illness Education, through Invisible International, a 501(c)(3) nonprofit foundation dedicated to reducing the suffering associated with invisible illnesses and social marginalization through innovation, education, and data-driven change projects. You can sign up to receive news and updates on our website.

Invisible International is a 501c3 that aims to solve challenges related to tick-borne illness through research and physician education. Its core team includes health care providers and scientists specializing in Infectious Disease, Internal Medicine, Family Medicine, Pathology, Pharmacy, Psychology, and Physical Medicine and Rehabilitation, as well as innovation and healthcare leaders.

Click here for more information about Invisible International.

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Category:

Lyme, Treatment

Have We Finally Reached a Lyme Research Tipping Point?

https://www.lymedisease.org/lyme-research-tipping-point/

Sept. 16, 2021

If there were such a thing as an Olympic competition for Lyme research, I have a pretty good idea who would be on Team USA.

A recent paper entitled “Recent Progress in Lyme Disease and Remaining Challenges,” co-authored by 31 researchers from 19 separate institutions, reads like an all-star lineup of Lyme disease researchers.

The authors include many names familiar to the Lyme community including: Monica Embers, PhD, John Aucott, MD, Kim Lewis, PhD, Ed Breitschwerdt, DVM, DACVIM, Nicole Baumgarth, DVM, PhD, and Brian Fallon, MD.

The lead author, Jason Bobe MSc, is an associate professor in the genetics and genome science department at the Icahn School of Medicine at Mount Sinai in New York City.

Bobe is part of Mount Sinai’s Resilience Project. It seeks to discover why some people are more able than others to resist or recover from certain illnesses, including Lyme disease.

Recent advancements in Lyme disease

This paper does an excellent job of summarizing the advancements in Lyme and tick-borne diseases over the past five years. It also identifies gaps in knowledge, remaining challenges, the need for additional funding and further research.

The paper paints a comprehensive picture of what causes acute Lyme disease, including immune activation, dissemination, and inflammation.  In addition, it looks at newly discovered biological markers that may aid in the development of improved diagnostics.

Included is a detailed description of several potential causes of symptoms of Lyme disease that persist after standard treatment. The authors propose that the most salient hypotheses are “persistence of infection or antigenic debris, persistence of inappropriate immune activation and inflammation, or some combination of these.”

Topics covered in the publication includes the weakness of current standard Lyme disease diagnostics and a review of several emerging diagnostic assays. Included in the section on treatment is a review of recent drug discoveries and complementary therapies, including natural and botanical medicines.

Direct detection test for Lyme?

Another co-author, Brandon Jutras PhD, is an assistant professor of biochemistry in the Virginia Tech College of Agriculture and Life Sciences. His team is working to develop a new direct diagnostic test for acute Lyme disease.

In 2019, Jutras discovered that Borrelia burgdorferi sheds peptidoglycan, a mesh-like substance that forms the cell wall of the bacteria once it invades the human body. Although all bacteria have peptidoglycan, many do not shed it.

“Current Lyme disease diagnostics are indirect, meaning that the tests are detecting antibodies produced by the human in response to the infection, rather than detecting the bacteria itself,” said Jutras. “This method is prone to error and relies on the individual’s immune system, which can take weeks to make enough antibodies to detect, not to mention that everyone’s immune system is different.”

“We are trying to develop and critically test a procedure whereby we detect peptidoglycan, which is a unique piece of the bacterium that causes Lyme disease,” said Jutras. “The piece is a specific and abundant fragment that may act as a direct biomarker for an active infection and, in theory, be detectable within hours of transmission from an infected tick.”

Other Lyme research

Portions of the paper include research done by the authors. Some highlights include:

  1. Monica Embers showing Lyme persists after a standard course of antibiotics, Lyme spirochetes in multiple organs after antibiotics, and Lyme spirochetes in an autopsied brain (despite treatment).
  2. John Aucott, ongoing research as Director of the Johns Hopkins Lyme Disease Research Center, including examining why brain inflammation persists after Lyme disease treatment.
  3. Kim Lewis’ work on eradicating drug-tolerant infections as well as his new investigation into the gut microbiome as it pertains to persistent Lyme disease.
  4. Brain Fallon’s decades of research on neurological Lyme which will be continuing at Columbia University’s new Cohen Center for Health and Recovery from Tick-Borne Diseases.
  5. Nicole Baumgarth’s research into how Lyme spirochetes evade the immune system.
  6. Ed Breitschwerdt and Richard Maggi’s decades of work on developing treatment for Bartonella and other co-infections.

The authors also encourage collaborative efforts like that being done by co-author Liz Horn, PhD, the principal investigator at the Lyme Disease Biobank (LDB). The LDB was created by the Bay Area Lyme Foundation and has partnered with the National Disease Research Interchange as well as LymeDisease.org’s MyLymeData research project.

Need for federal funding

The authors highlight the urgent need for adequate federal funding to “support advancement in the scientific and clinical understanding of the disease, or to develop and evaluate innovative approaches for prevention, diagnosis, and treatment.”

The paper reads like a summary of all 14 of the previous Tick-borne Disease Working Group (TBDWG) sub-committee reports generated by the 2018 and 2020 working groups. If you’ve read any of the TBDWG sub-committee reports (some of them over 100+ pages long), you know this summary was a heavy lift.

Monica Embers was recently appointed to the 2021-2022 TBDWG. I hope this paper will be required reading for the 13 other members!

“It is very exciting to have the opportunity to shape future funding priorities regarding tick-borne disease research and response,” said Embers. “I’d like to see more of an emphasis on the neurological impacts of Lyme disease and a renewed commitment to improving how we diagnose and treat the disease.”

Outline

To summarize the entire paper would be difficult as it is over 80 pages long, with nearly 350 references, and swimming in deep science. If you are interested in a particular topic, I have provided an outline and a link to the paper below.

The topics included in this paper include:

  1. Introduction
  2. Clinical and Translational Medicine
    1. Diagnosis
      1. Exposure to Ticks
      2. Serological Testing
      3. Signs and Symptoms
      4. EM Lesion
      5. Direct Detection of Bb
      6. Emerging Diagnostics
    2. Treatment
      1. Drug Discovery and Preclinical Studies
      2. Complementary Therapies
    3. Well-Defined LD Patient Subgroups With Posttreatment Sequelae
      1. Antibiotic Refractory Lyme Arthritis
      2. PTLD
  3. Fundamental Knowledge
    1. Genomic Insights From Borreliaceae Lineages
    2. Proteomic Insights From Borreliaceae Lineages
    3. Transmission of Bb via Ixodes Spp. Vectors
    4. Pathogenesis
      1. Immune Activation and Inflammation in Untreated LD
      2. Inflammation and Immune Dysregulation Among Patients With Persistent LD
        1. CRP in Patients With Persistent Symptoms Following Treatment
        2. IFN-y and Antibiotic-Refractory Lyme arthritis patients
        3. CCL19 Among PTLD Patients
        4. IL-23 Among European PTLD Patients
        5. Autoantigens and Self-Reactivity In LA
    5. Persistence
      1. Persistent Antigenic Debris
      2. Persistent Infection
  4. Prevention
    1. Ecological Prevention
    2. Human Vaccine
    3. Field Building
      1. Biorepositories and Research Cohorts
        1. Lyme Disease Biobank
        2. Lyme Disease Research
        3. Long Island Outdoor Worker Cohort
      2. Data Repositories
        1. LymeMIND Commons
  5. Discussion
READ THE PAPER

Reference

Bobe JR, Jutras BL, Horn EJ, Embers ME, Bailey A, Moritz RL, Zhang Y, Soloski MJ, Ostfeld RS, Marconi RT, Aucott J, Ma’ayan A, Keesing F, Lewis K, Ben Mamoun C, Rebman AW, McClune ME, Breitschwerdt EB, Reddy PJ, Maggi R, Yang F, Nemser B, Ozcan A, Garner O, Di Carlo D, Ballard Z, Joung H-A, Garcia-Romeu A, Griffiths RR, Baumgarth N and Fallon BA (2021) Recent Progress in Lyme Disease and Remaining Challenges. Front. Med. 8:666554. doi: 10.3389/fmed.2021.666554

LymeSci is written by Lonnie Marcum, a Licensed Physical Therapist and mother of a daughter with Lyme. In 2019-2020, she served on a subcommittee of the federal Tick-Borne Disease Working Group. Follow her on Twitter: @LonnieRhea  Email her at: lmarcum@lymedisease.org.

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**Comment**

I’m an optimistic person by nature; however, I have little hope for true change in Lyme-land.  All we have to do is look around at the continuing censorship, persecution, and real misinformation about COVID to see there are powerful forces at work that just don’t seem to step down despite protests, good scientific information, and facts.

Category:

Lyme, research

Revisiting an Anthropologist’s View of Lyme-Related Suicide

https://www.lymedisease.org/revisiting-anthropologists-view/

TOUCHED BY LYME: Revisiting an anthropologist’s view of Lyme-related suicide

I first came across Aaron Jackson in 2018, when he submitted a guest blog for our website. It was titled An anthropologist’s view of Lyme disease and suicide.

Aaron was the anthropologist in question. As a Lyme-infected person who had tried to take his own life, he was uniquely qualified to discuss this topic.

His article clearly hit a responsive chord with our readers. It became one of our website’s most-accessed blogs that year.

I recently heard from Aaron again. He lives and works in Australia now. His research focuses on fatherhood, caregiving, and disability.

He has written a book called “Worlds of Care: The Emotional Lives of Fathers Caring for Children with Disabilities,” recently published by University of California Press.

Aaron was propelled into the world of caregiving after the birth of his severely disabled son, Takoda. The book uses his personal experience caring for Takoda as a springboard for larger discussions about fatherhood, caregiving and our cultural ideas of masculinity.

He also includes some of his personal experience with Lyme disease. The following excerpt of his book talks about how Lyme thrust him into the depths of despair, and what ultimately came of it.

Worlds of Care

My ordinary patterns of everyday life deteriorated. The world around me no longer hummed with vibrancy or possibility. I couldn’t climb a short flight of stairs without almost collapsing, forget about kickboxing. I no longer had the stamina to play with my children or take care of them the way I was used to doing.

The roles and responsibilities that shored up my identity as a father and caregiver were lost to me. I became dependent on my spouse for care.

So, on a quiet morning at the end of summer, I tried to take my life

˜˜˜˜

A poignant epilogue to the book tells us that young Takoda died unexpectedly in his sleep in 2019. He was 8 years old.  (See link for article)

Click here for more information about the book. You can follow Aaron Jackson on Twitter @Kodacruz.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s Vice-president and Director of Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org .

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Category:

Activism, Lyme, Psychological Aspects

Controversy Continues: “True Chronic Lyme Disease” Rather Than “Post-treatment Lyme Disease Syndrome”

Although written in 2018, it’s a perfect example how the debate continues on the issue of pathogen persistence due to thousands of patients who continue to have severe symptoms of Lyme/MSIDS despite years of treatment.  Similarly to the censorship and maligning of ivermectin, HCQ, and other effective treatments for COVID, doctors treating Lyme/MSIDS are afraid to treat patients long-term as the same bullying has occurred.

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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6100330/

2018 Jul-Sep; 10(3): 170–171.
doi: 10.4103/jgid.jgid_152_17
PMCID: PMC6100330
PMID: 30166820

The Persistent Lyme Disease: “True Chronic Lyme Disease” rather than “Post-treatment Lyme Disease Syndrome”

Alexis Lacout, Mostafa El Hajjam,1 Pierre-Yves Marcy,2 and Christian Perronne3
Author information Copyright and License information Disclaimer
 

Sir,

A controversy continues regarding the reality of a chronic form of Lyme disease. Chronic Lyme disease can present as a “post-Lyme syndrome” explained by inflammatory and immunological phenomena, or as a genuine “chronic form” attributable to the persistence of the bacteria despite proper antibiotic therapy as per the current guidelines. The current guidelines however may not be so appropriate in the latter case.

The case referenced is of a 40-year-old patient, a hunting gard, regularly suffering from multiple tick bites. He began experiencing a lack of energy with diffuse palate of pains (cramps, stiffness, and neuropathic burning pain), tremor and fluctuating migrating arthralgia that evolved over a 3-month period. A first Lyme serology proved positive in Western blot. A second Lyme serology, performed a few months later, was negative but showed the presence of IgM antibodies below the threshold of of positivity: OspCBss(0,6), OspCBaf (0, 7), OspCBag (0, 5) and OspCBspp (0, 6).

A 21-day treatment of ceftriaxone (2 g/day) resulted in a spectacular improvement in his overall state of health. Yet, despite the improvement, there remained persistent bouts of moderate asthenia with episodes of arthralgia. Consequentially, two new antibiotic treatments were administered: ceftriaxone (2 g/day) for 15 days and doxycycline (100 mg twice a day) for 1 month. His symptoms disappeared almost completely. However, his symptoms gradually reappeared. A new approach with antibiotics was initiated: ceftriaxone (2 g/day for 1 month) followed by doxycycline (200 mg twice a day) associated with hydroxychloroquine 200 (once a day). Two months later, after a quick improvement, the patient exhibited no symptoms. Five months later, while the treatment was continued, the patient was still asymptomatic.

The clinical improvements and setbacks corresponding strictly to the administration and interruption of antibiotics, and the final remission are in favor of a chronic persistence of Borrelia. Interestingly, the persistence of Borrelia infection, despite a proper antibiotherapy, has been well described in literature.[] It would be due to the existence of the cystic shapes of Borrelia resisting to antibiotics and the creation of extracellular (matrices) biofilms protecting the bacteria.[] Bacteria that grow as a biofilms are indeed protected from killing by antibiotics.

In patients presenting with a chronic form, the interferon-gamma response is not followed by an increase in IL-4, thus suggesting both a persistent Th1 response and a deficiency in the Th2 response.[] Borreliosis may thus induce immunosuppression with a lack of humoral response and long-term immunity.[] False-negative serological results could be attributed to a deficiency of antibody production. As a matter of fact, Leeflang et al. reported a poor sensitivity of the enzyme immunoassay/immunoblot of 0.77 (95% confidence interval: 0.67–0.85) in the diagnosis of neuroborreliosis.[] A meta-analysis of test accuracy reported a sensitivity of only 59.5%, varying from 30.6%–86.2%.[] Antibiotic testing is necessary to reach Lyme disease final diagnosis, namely in patients presenting with negative tests and a suggestive clinical presentation.

Declaration of patient consent

The authors certify that they have obtained all appropriate patient consent forms. In the form the patient(s) has/have given his/her/their consent for his/her/their images and other clinical information to be reported in the journal. The patients understand that their names and initials will not be published and due efforts will be made to conceal their identity, but anonymity cannot be guaranteed.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.

REFERENCES

  1. Miklossy J, Kasas S, Zurn AD, McCall S, Yu S, McGeer PL, et al. Persisting atypical and cystic forms of borrelia burgdorferi and local inflammation in lyme neuroborreliosis. J Neuroinflammation. 2008;5:40. [PMC free article] [PubMed] []
  2. Widhe M, Jarefors S, Ekerfelt C, Vrethem M, Bergstrom S, Forsberg P, et al. Borrelia-specific interferon-gamma and interleukin-4 secretion in cerebrospinal fluid and blood during lyme borreliosis in humans: Association with clinical outcome. J Infect Dis. 2004;189:1881–91. [PubMed] []
  3. Elsner RA, Hastey CJ, Olsen KJ, Baumgarth N. Suppression of long-lived humoral immunity following borrelia burgdorferi infection. PLoS Pathog. 2015;11:e1004976. [PMC free article] [PubMed] []
  4. Leeflang MM, Ang CW, Berkhout J, Bijlmer HA, Van Bortel W, Brandenburg AH, et al. The diagnostic accuracy of serological tests for lyme borreliosis in europe: A systematic review and meta-analysis. BMC Infect Dis. 2016;16:140. [PMC free article] [PubMed] []
  5. Cook MJ, Puri BK. Commercial test kits for detection of lyme borreliosis: A meta-analysis of test accuracy. Int J Gen Med. 2016;9:427–40. [PMC free article] [PubMed] []

Please see Microbiologist Tom Greer’s Important paper on “The Complexities of Lyme Disease”:

https://mail.google.com/mail/u/0/#inbox/FMfcgzGljlpcXbHDNVSpLsZWzfHRfWQV?projector=1&messagePartId=0.1

For more:

Similarly to what’s occurring with effective COVID treatments, treatments for Lyme/MSIDS have been attacked as well.

 

Category:

Lyme, research, Testing, Treatment

Bachelorette’s Ryan Sutter Meets 16-Year-Old ‘Inspiration’ Amid His Own Lyme Disease Battle: She’s a ‘Survivor’

https://www.usmagazine.com/celebrity-news/news/bachelorettes-ryan-sutter-meets-an-inspiration-amid-health-battle/

Bachelorette’s Ryan Sutter Returns to the Gym Amid Mystery Illness Battle: ‘Doing My Best to Get Back to My Best'
Ryan Sutter John Nacion/Startraks

Staying positive! As Ryan Sutter continues to deal with several health issues this year, the Bachelorette alum took to social media to reflect on his journey following a meeting with a Lyme disease survivor.

Stars Who’ve Battled Lyme Disease: Justin Bieber, Bella Hadid, More

“Two things crossed my mind when I saw this picture. The first, how lucky I am to have met Olivia Goodreau. Olivia is the 16 year old founder of @livlymefoundation She is a ten year Lyme survivor, a true inspiration and has done more in her short life so far than most ever do in a lifetime,” Sutter, 46, wrote in a lengthy post via Instagram on Sunday, August 29. “Proud to have accepted a position on the board at LiveLyme.”

The former reality star then reflected on his appearance after having to deal with mystery symptoms for over a year before officially receiving a proper diagnosis.

(See link for article)

Category:

Activism, Lyme