LDA NEWS & UPDATES
November 2020
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Pat Smith in WG meeting on geographic boundaries preventing Lyme diagnosis: “I lived in the world of patients for 36 years, and I can tell you that they are not getting treated in those states because the government and other entities are telling them there is no disease. They are consistently not being diagnosed and treated, and you think this because there is a positive test they will get treated? No way. That doesn't happen. To do this is the kiss of death. You will put another nail into the coffin of people in these states and to do this without even being willing to make changes to the language, I find it totally unconscionable.”
Testing Not Put into Chapter 8, "Epidemiology & Surveillance"
Pat Smith stated, “Since Lyme disease has the burden of illness within TBD and testing is one of the biggest issues, why is that not discussed in this report?” David Walker responded, “Lyme disease moves more slowly and there is ample opportunity and a much better opportunity to make diagnosis.” Pat retorted, “David, you don’t think there’s any Lyme disease beyond a few weeks and a few Doxy pills, and I think the time has come that we have to acknowledge there is ample research out there to show it isn’t true, and that diagnostic tests are not picking up our patients, and it’s time we did something about it! I don’t know what we are waiting for. And I’m not asking for the moon in this chapter but asking merely for something that addresses the fact that there is a need and obviously the government has to look at that need.”
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Elizabeth Maloney, MD; Capt. Scott Cooper, PA, CMS; and Pat Smith, LDA at January 29, 2020 WG meeting. Photo from LDA archives
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Controversial Topics Discussed
A number of topics were vigorously debated at the Working Group (WG) meeting on 10/27/20. The issues of Lyme diagnostics were not mentioned in the Chapter 8 section on challenges and issues. The use of Bayes Theorem to try to preclude Lyme in low incidence states was challenged as was travel-related disease used to explain the cases there. Old and unavailable citations (use of 1904 article that was reviewed and 1941 article) used to substantiate RMSF deaths. A one-hour turbulent discussion of the rules which apparently were changed on how a minority report could be done and the motion made by Pat Smith to save her minority report. Suggesting the inclusion of outreach to industry in "Looking Forward" chapter for next WG brought up conflicts of interest and change in WG makeup.
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Richard Horwitz, MD, et al., have published a new case study and retrospective chart review of 40 patients on double dose dapsone combination therapy (DDD CT) in the journal Antibiotics.
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The study found that of the 40 patients analyzed, an 8-week course of dapsone combined with doxycycline and rifampin effectively improved symptoms in 98% of patients, as well as led to long-term remission in 45% of the total patients studied, even though most of the individuals were ill for a decade or longer.
The research included a segment of 12 patients with the presence of EM rashes. Of these, 100% showed improvement with 58% remaining in remission. The study abstract states, “In conclusion, double-dose dapsone therapy could represent a novel and effective anti-infective strategy in chronic Lyme disease/post-treatment Lyme disease syndrome (PTLDS), especially in those individuals who have failed regular dose dapsone combination therapy (DDS CT) or standard antibiotic protocols.” Read more.
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The results of a study to collect ticks from Pike County, Pennsylvania, conducted by the Northeast Wildlife DNA Laboratory of East Stroudsburg University included real time PCR analysis of ticks countywide. The county was divided into 9 grids, each with several collection sites. The sites were based on use by community members and presence of favorable tick habitat and included: state parks, state game lands, township buildings, schools, township parks, communities and hiking trails.
All life stages of Ixodes scapularis ticks (deer tick) were collected, but only nymphs and adults were tested. Borrelia burgdorferi prevalence in I. scapularis ticks overall was 39%, with Bartonella spp. next with 18.5%. Read more.
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In 2018, the Lyme Disease Association, Inc. awarded a grant to Pike County to help support this project.
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Lorraine Johnson, LymeDisease.org, MyLymeData |
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A new study lead by researchers from the University of California Los Angeles (UCLA) analyzed data from the MyLymeData patient registry. The Registry, with over 13,000 enrolled patients, is a project of the non-profit LymeDisease.org.
The researchers used machine learning techniques and analyzed more than 2,000 patients with chronic Lyme disease (CLD) from the database to identify key features associated with improved patient response. They found that the extended use of antibiotics was an important element of improved health. Read more.
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A study published in the journal Diagnostic Microbiology and Infectious Disease addresses the observed negative effects of the COVID-19 pandemic on the timely diagnosis of tick-borne infections (TBD) in three adult patients.
The researchers examined the ways that various precautionary measures, which have been set in place to reduce the spread of the COVID-19 virus, can also have indirect health effects on patients who have been infected with TBD. This situation may potentially result in the failure to properly diagnose TBD infections. Read more.
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The U.S. Department of Health and Human Services (HHS) and the Steven & Alexandra Cohen Foundation announced a new $25 million-dollar, public-private partnership – the LymeX Innovation Accelerator (LymeX).
The HHS website states, “Our LymeX mission is to strategically advance Lyme and tickborne disease solutions in direct collaboration with Lyme patients, patient advocates, and diverse stakeholders across academia, nonprofits, industry, and government.” Read more.
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