Archive for the ‘Lyme’ Category

Heading to Finland to Find Ways to Accurately Diagnose Tick-Borne Diseases

https://www.lookingatlyme.ca/2020/10/s1-e14-heading-to-finland-to-find-ways-to-accurately-diagnose-tick-borne-diseases/

Heading to Finland to find ways to accurately diagnose tick-borne diseases

EPISODES / BY

In this episode Sarah talks with Canadian researcher Dr.Leona Gilbert, originally from Thunder Bay, and currently living in Finland. Dr. Gilbert tells us about an interaction with a patient that led her to focus on testing for Lyme disease. She points to research showing that patients who suffer from long term effects of Lyme disease often test positive for multiple microbes. 

Tickplex is a diagnostic kit that tests for six different forms of borrelia, ten other forms of microbes as well as antibodies which correlate to three different disease stages – all in one test! Dr. Gilbert explains the benefit to this method (also known as polymicrobial theory) over testing for one microbe with one antibody at a time. She points out that many long time sufferers of Lyme disease and co-infections are unable to build an adequate immune response to these microbes, but with treatment their immune system starts to respond and is then able to create antibodies. Research is also showing that outcomes are much better for those patients who are diagnosed early, tested for multiple microbes and then treated. She also talks about how multiplex testing is identifying patients who are “shining up” due to a hyperactive immune system.

“We need to let the science drive us and let the needs of the patient also influence where we’re going with the science as well.”

Dr. Leona Gilbert

Dr. Gilbert explains that polymicrobial theory, although accepted in other disease models, will take time to be accepted in relation to Lyme disease and points out the importance of creating individual treatment protocols based on multiple microbe testing as well. She strongly believes that both the science and the needs of the patient should drive researchers and points out that her group collaborates with patient groups, advocacy groups, scientific groups, as well as national and international organizations. 

Dr. Gilbert explains for us the difference between co-infections and opportunistic infections and touches on the role of decreased immune function and opportunistic infections in Lyme patients.

Find out more about our forthcoming educator resource!

Did you know that Lyme bacteria can persist even after treatment? Dr. Gilbert outlines research done not only in the lab, but also in animals and in humans that proves that persister forms of Borrelia exist despite antibiotic treatments. She discusses some of the theories behind how borrelia is able to evade treatment, including within biofilms, by transforming into round body forms and by moving into certain places in the body. Dr. Gilbert talks about other research that’s happening to better understand these persister forms. She explains how we can access the Tickplex test from overseas.

“People that have been sick for a very long time, even five to ten years, that they actually can’t even build up an immune response to actually resolve these microbes.”

Dr. Leona Gilbert

Sarah Cormode and Dr. Leona Gilbert talk tick-borne illness and diagnosis.

https://player.captivate.fm/episode/e19ec32c-499b-4cbf-9f63-62471b78ceac  (Listen Here)

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**Comment**

Gilbert was part of the group that found a high probability of patients being infected with multiple pathogens.

For more:

https://madisonarealymesupportgroup.com/2018/10/30/study-shows-lyme-msids-patients-infected-with-many-pathogens-and-explains-why-we-are-so-sick/

Excerpt:

For the first time, Garg et al. show a 85% probability for multiple infections including not only tick-borne pathogens but also opportunistic microbes such as EBV and other viruses.

Additionally, 83% of all TBD diagnostic tests performed by the commercial laboratories in the USA accounted for only LD. Globally, the commercial laboratories’ ability to diagnose LD has increased by merely 4% (weighted mean for ELISA sensitivity 62.3%) in the last 20 years. This study provides evidence regarding polymicrobial infections in patients suffering from different stages of TBDs. Literature analyses and results from this study followed Hill’s criteria indicating a causal association between TBD patients and polymicrobial infections. Also, the study outcomes indicate that patients may not adhere to traditional IgM and IgG responses.

This is groundbreaking information that doesn’t get any recognition.

Category:

Lyme, research, Testing, Ticks

Opinion: Neurologic Problems in Lyme Disease Also Seen in COVID-19

https://danielcameronmd.com/neurologic-lyme-disease/

OPINION: NEUROLOGIC PROBLEMS IN LYME DISEASE ALSO SEEN IN COVID-19

neurologic lyme disease patient in hospital

Doctors have been describing neurologic problems in Lyme disease patients for decades. Thirty years ago, Lyme encephalopathy and Lyme neuropathy were discussed in the New England Journal of Medicine. Since then other neurologic problems in Lyme disease have been described including Neuropsychiatric Lyme disease and Pediatric Acute-onset Neuropsychiatric Syndrome (PANS). Now, patients with COVID-19 are reportedly experiencing neurologic problems.

By

In their study, “Frequent neurologic manifestations and encephalopathy‐associated morbidity in Covid‐19 patients,”Liotta and colleagues describe neurologic manifestations in 509 patients with confirmed COVID-19.¹ The authors sought to identify the incidence of neurologic complications in COVID-19 patients.

The study found:

  • More than 8 out of 10 COVID-19 patients suffered from neurologic complications.
  • Nearly 1 out of 3 COVID-19 patients suffered from headaches, encephalopathy, and dizziness, which are also common neurologic symptoms in Lyme disease.
  • Other symptoms included myalgia and fatigue, which occurred in 43% of patients at the onset of illness and in 79% of patients during COVID-19 disease.
  • COVID-19 patients with encephalopathy were less likely to have a good outcome.
  • COVID-19 patients with encephalopathy were hospitalized 3 times longer than COVID-19 patients who did not have encephalopathy.

Author’s Note: Encephalopathy typically refers to altered sensorium and central nervous system (CNS) dysfunction. There is no standardized test for encephalopathy. It appears the authors diagnosed their cases of encephalopathy using clinical judgment.

Encephalopathy has been associated with a poor outcome in other diseases. Some patients with Lyme encephalopathy have had a poor outcome. I have found that patients with this condition can be more challenging to treat.

The authors encourage further research and studies of encephalopathy in patients including those with “Covid-19 who complain of protracted inability to concentrate or decreased short-term memory (referred to as ‘brain fog’).”

READ MORE: Lyme disease manifesting as acute transverse myelitis

There are several potential causes of encephalopathy in this group of COVID-19 patients, which include: systemic disease and inflammation, coagulopathy, direct neuroinvasion by the virus, endotheliitis, post-infectious autoimmune mechanisms, intensive care unit delirium, sedation and analgesia doses, disruption of sleep/wake cycles, and infectious complications.

But due to limitations from the COVID-19 pandemic, the authors were unable to determine the exact cause of their patients’ encephalopathy.

Although I am unable to determine the cause of encephalopathy in Lyme disease patients, I encourage doctors to recognize the condition, so that prompt treatment may occur, improving the chances for a complete recovery.

Screening for encephalopathy

The authors advocate for broader recognition and targeted treatment of encephalopathy. “Broad recognition and screening for encephalopathy as a contributor to disease severity in Covid-19 may have utility in resource allocation and potential to improve patient outcomes,” writes Liotta.

“Prospective cognitive and neurologic-focused evaluations through specialized clinics dedicated to further diagnostic assessment and tailored rehabilitation needs could play a significant role in recovery from this pandemic,” the authors write.

Johnson and colleagues reported better outcomes in Lyme disease patients who were treated by doctors with expertise in treating Lyme disease.²

Related Articles:

Six cases of neurological Lyme disease

Chronic neurological Lyme disease or co-morbid conditions?

Neurological damage/dysfunction found in early Lyme disease patients

References:
  1. Liotta EM, Batra A, Clark JR, et al. Frequent neurologic manifestations and encephalopathy-associated morbidity in Covid-19 patients. Ann Clin Transl Neurol. 2020.
  2. Johnson L, Shapiro M, Stricker RB, Vendrow J, Haddock J, Needell D. Antibiotic Treatment Response in Chronic Lyme Disease: Why Do Some Patients Improve While Others Do Not? Healthcare (Basel). 2020;8(4).

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**Comment**

The concern is people being misdiagnosed with COVID-19 when they have Lyme/MSIDS.

I was just contacted by a patient right here in Wisconsin who tested POSITIVE for Lyme THREE times but was told by the infectious disease doctor it was a “false negative.”  

Wow.

Nothing has changed in Lyme-land.  Infectious disease doctors are typically the worst in my experience regarding tick-borne illness.  They still follow ancient unscientific advice from the CDC that Lyme/MSIDS is hard to catch and easy to treat.  Get to a Lyme literate doctor asap!

For more:  https://madisonarealymesupportgroup.com/2020/05/30/a-tale-of-two-pandemics-lyme-covid-19-dr-bransfield/

Category:

Inflammation, Lyme, research, Viruses

Success of Prescription & Alternative Medicine Lyme Treatments

https://www.treatlyme.net/guide/antibiotic-alternative-medicines-for-lyme

what_works_to_treat_Lyme_feature

Success of Prescription & Alternative Medicine Lyme Treatments

By Dr. Mary Ross

In my Lyme Q&A webinars and my clinical practice at Marty Ross MD Healing Arts, I answer questions about which treatments work best to recover from chronic Lyme.

Which prescription or herbal antibiotics really work for chronic Lyme disease and how long do they take? What about alternative medicine Lyme disease treatments like:

  • Rife machines,
  • stem cell therapy,
  • ozone,
  • hyperbaric oxygen,
  • hyperthermia,
  • supportive oligonucleotide therapy (SOT),
  • low dose immunotherapy (LDI), or
  • IV hydrogen peroxide?

(Go to link for article)

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**Comment**

Dr. Ross states that in the past he would have had to rely solely upon his clinical experience to address the issue of what works in treating Lyme/MSIDS as the NIH stopped funding clinical research on Lyme disease treatments over 15 years ago and only had studies looking at short term antibiotic use of three months or less.

In this article; however, he utilizes not only his clinical experience but that of MyLymeData, a registry of over 12,000 patients who submit information about their experience with treatment.  Learn more or sign up to participate in MyLymeData at lymedisease.org.

In brief:

  • 76% of those that got well used prescription antibiotics but that this took a year or more to accomplish.
  • patients did best when working with an ILADS trained doctor
  • patients found numerous other alternative therapies helpful (see Ross’ article for the breakdown)
  • Dr. Ross states that the results match his clinical experience 
  • Ross also found that hyperthermia benefits lasted only 2-3 months
  • Ross’ review of the science leads him to believe that ozone, hydrogen peroxide and other oxygen therapies do not kill germs due to anti-oxidants in the blood working as killing neutralizers, but that patients often feel better due to helping the mitochondria.  
  • Ross feels stem cell therapy is an expensive disappointment.
  • He finds those using Rife get benefit 35% of the time.
  • He feels CBD from cannabis is not a good germ killer in humans but that it can treat symptoms.
  • He is skeptical of both SOT and LDI.
  • He also lists many other issues Lyme/MSIDS patients experience (please see article)

All in all, a great informative article.  I’m so thankful whenever doctors write about their clinical experience as there is so little out there on what works. The fact that patients and Dr. Ross are stating the same things is also quite helpful and fruitful.  

We may not have NIH funded studies but we have experience on our side.  

For more:  https://madisonarealymesupportgroup.com/2016/02/13/lyme-disease-treatment/

https://madisonarealymesupportgroup.com/2020/10/01/new-dapsone-study-breaking-biofilm/

https://madisonarealymesupportgroup.com/2020/06/26/new-treatments-for-lyme-disease-on-the-horizon/

https://madisonarealymesupportgroup.com/2020/10/14/peer-reviewed-study-confirms-what-we-knew-all-along-longer-antibiotic-treatment-duration-is-associated-with-better-treatment-response-for-lyme-disease/

 

 

Category:

Herbs, Lyme, research, Treatment

Study Finds Two Ways to Improve Lyme Testing

https://www.mdpi.com/2079-7737/9/11/366

The Platelet Fraction Is a Novel Reservoir to Detect Lyme Borrelia in Blood

by Victoria P. Sanderson 1, Iain L. Mainprize 1, Lisette Verzijlenberg 1, Cezar M. Khursigara 2 and Melanie K. B. Wills 1,*
*Author to whom correspondence should be addressed.
Biology 2020, 9(11), 366; https://doi.org/10.3390/biology9110366
Received: 16 September 2020 / Revised: 23 October 2020 / Accepted: 27 October 2020 / Published: 29 October 2020
(This article belongs to the Special Issue Advances in the Biology of Leptospira, Borrelia and Other Spirochetes)
Simple Summary
To diagnose Lyme disease, a patient’s blood is tested for antibodies that develop as part of the immune response. This can lead to cases being missed or inadequately treated. An ideal test would directly detect the Lyme disease bacteria, Borrelia, to provide better clinical guidance. In this study, we aimed to improve the methods currently used to find Borrelia in human blood, and identified two opportunities for optimization. We demonstrate that the container most commonly used to collect blood (EDTA) decreases Borrelia’s ability to grow, and we identify a superior alternative (citrate). Additionally, using experimentally infected blood, we show that Borrelia is highly concentrated in the platelet fraction, making it an ideal candidate for direct detection. These results lay the foundation for diagnostic test development, which could improve patient outcomes in Lyme disease.
Abstract
Serological diagnosis of Lyme disease suffers from considerable limitations. Yet, the technique cannot currently be replaced by direct detection methods, such as bacterial culture or molecular analysis, due to their inadequate sensitivity. The low bacterial burden in vasculature and lack of consensus around blood-based isolation of the causative pathogen, Borrelia burgdorferi, are central to this challenge. We therefore addressed methodological optimization of Borrelia recovery from blood, first by analyzing existing protocols, and then by using experimentally infected human blood to identify the processing conditions and fractions that increase Borrelia yield. In this proof-of-concept study, we now report two opportunities to improve recovery and detection of Borrelia from clinical samples. To enhance pathogen viability and cultivability during whole blood collection,
  • citrate anticoagulant is superior to more commonly used EDTA.
  • Despite the widespread reliance on serum and plasma as analytes, we found that the platelet fraction of blood concentrates Borrelia, providing an enriched resource for direct pathogen detection by microscopy, laboratory culture, Western blot, and PCR. The potential for platelets to serve as a reservoir for Borrelia and its diagnostic targets may transform direct clinical detection of this pathogen. View Full-Text

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For more:

The CDC deliberately avoids direct detection methods and has suppressed efforts for a direct test for decades.

Around 2003 the WHO encouraged research into microscopy as a direct test for the Borrelia spirochete, the pathogen causing Lyme disease. When a promising new and simple technique was discovered in 2013, it was however violently attacked. Not on the science itself, which is the normal procedure in science, but personally. Now retired professor microbiology Morten Laane was fired after he gave a lecture at a scientific conference in 2014. Moreover, his laboratory was closed down, the website of the scientific journal was hacked and the article disappeared. An exclusive interview (in link).

Lyme advocate and patient Carl Tuttle continues to ask WHY direct detection methods are not used for tick-borne illness.  The CDC continues to give him the run-around:  https://madisonarealymesupportgroup.com/2020/05/27/letter-to-cdc-dr-beard-why-isnt-direct-detection-of-lyme-disease-a-priority/

Within this link you will learn of a current lawsuit over this issue by Sin Hang Lee, alleging that employees of the Centers of Disease Control and Prevention (CDC) unilaterally terminated a contractual agreement under which the CDC agreed to evaluate a “no false-positive” DNA based Lyme disease test, a currently available test that vastly improves the speed and accuracy of Lyme disease diagnosis for sufferers, and one that is capable of diagnosing all tick-borne borrelial infections.

The CDC’s stranglehold over Lyme testing is also evident with COVID-19 testing.  

I question whether an accurate test for COVID-19 is even possible. It appears it has NOT been singularly isolated and purified and without this important foundation, an accurate test AND vaccine will never be possible:

Category:

Lyme, research, Testing

Managing Risk of Ticks

https://www.lookingatlyme.ca/2020/10/managing-risk-in-the-outdoors-with-steve-smith/

S1 E15: Managing risk in the outdoors, with Steve Smith

EPISODES / BY
looking-at-lyme-s1-e15-v1.0
Listen to Podcast:  https://podcasts.captivate.fm/media/7662b08f-4966-458a-bc65-0d9d7c7413de/15-lal-steve-smith.mp3

In this podcast, Sarah speaks with Steve Smith, an expert in outdoor risk management. Steve has worked for many years teaching, leading, planning, and consulting about ways to manage risk in the outdoors. Steve recently presented at the 2020 NOLS Wilderness Risk Management Conference.

Steve begins by explaining the difference between safety and risk management, and why this distinction is necessary when it comes to taking people into the wilderness. Every day we take risks and some degree of risk is not only unavoidable, it’s a necessary part of being human. Sarah and Steve discuss many of the benefits of how outdoor education and recreation translate to life skills, personal and social growth. Steve speaks about the history of Outward Bound and founder Kurt Hahn who taught about the importance of educating the whole student and encouraging them to explore beyond their comfort zones. It is an important component of developing and managing outdoor education programs, looking at the beneficial risks and identifying and mitigating the undesirable risks.

Sarah raises the topic of duty of care when taking care of young people in the outdoors. Steve points out that a robust risk management program is even more important when working with children. He points out that because Lyme disease is a very serious illness, accurate risk assessment and robust risk management strategies are needed. An important part of these strategies include having a plan in place to respond when events do happen.

Find out more about our forthcoming educator resource!

Steve sees risk management programs in terms of layers which start long before the adventure begins. He describes a risk management model introduced to thim by one of his mentors, Charles Reb Gregg, called “analyze – manage – inform”. This model involves analyzing hazards, managing them and informing people about potential hazards. He touches on the importance of informing participants in advance to avoid legal action. He describes some ways to analyze risk in relation to Lyme disease such as knowing the local tick activity. Managing the risk could include wearing bug repellant, avoiding tick habitats, and doing tick checks. Another important aspect of the strategy is knowing what to do if a participant finds an embedded tick, and knowing the symptoms of Lyme disease. Steve reiterates the importance of informing participants and/or parents about the risks involved.

It’s not about eliminating the risk altogether, it’s about managing that risk.
Steve Smith, Experiential Consulting, LLC

Steve explores some of the legal aspects involved when planning outdoor activities, and refers to a lawsuit relating to tick-borne encephalitis. He talks about the importance of hiring qualified staff, providing adequate and ongoing training, having written policies and procedures, and reporting and learning from incidents when they do occur. He emphasizes the value of reporting and analyzing “near misses” in order to learn from them and prevent similar incidents. Similarly, Steve finds that reflecting back on a trip with those who are running it is a great way to learn and make improvements for future programs.

Emphasizing the overwhelmingly positive aspects of outdoor education, Steve reminds us of how a solid risk management strategy (and corresponding policies and procedures) enable these programs to continue. He urges us to keep learning from our adventures and highly  recommends the NOLS Wilderness Risk Management Conference for those running outdoor programs. Thank you Steve for sharing and helping us manage risk in the outdoors!

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For more:  https://madisonarealymesupportgroup.com/2019/04/12/tick-prevention-2019/

https://madisonarealymesupportgroup.com/2019/07/18/frequent-prescribed-fires-can-reduce-risk-of-tick-borne-diseases/

https://madisonarealymesupportgroup.com/2018/05/27/study-conforms-permethrin-causes-ticks-to-drop-off-clothing/

https://madisonarealymesupportgroup.com/2016/05/31/fry-and-die/

https://madisonarealymesupportgroup.com/2019/05/08/upstate-ny-disease-expert-prevention-really-works-do-it/

https://madisonarealymesupportgroup.com/2020/08/11/nootkatone-registered-by-epa-insect-repellent-products-could-be-available-by-2022/

Category:

Lyme, Prevention, Ticks