LDA NEWS & UPDATES
May 2020
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May is for Lyme & TBD Awareness!
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LDA has compiled a number of web pages - either updated or newly created - with important Lyme & TBD information & resources:
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May is Lyme Disease Awareness Month, a time to remind ourselves that Lyme is a disease that has been neglected, minimized, and ridiculed over decades and still continues to be. We all need to redouble our efforts to get an accurate test and to get patients properly treated, and treated with dignity. The continued arbitrary ban on ignoring persistent Lyme disease and treating persistent Lyme patients must be lifted!
In
the blog
, Pat Smith exposes many untold stories of injustices perpetrated upon Lyme patients over decades, especially children, and also upon treating physicians.
Her bottom line: “Those individuals who suffer with, or care for patients with Lyme
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Pat Smith at Voices of Lyme Rally, Westchester 2006
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disease, have had to face not only the disease, economic ruin, and family demise, but also ridicule, scorn, and a journey through Hell, never knowing what the next level will be or when their torment will end. It is a journey burned into the soul.”
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Lyme Disease Association, Inc. (LDA) is proud to celebrate 30 years of advocacy and volunteerism to improve research, education, and patient support surrounding Lyme and tick-borne disease. LDA's Pat Smith reflects on
three decades of service.
Early Years
- By 1990, the total US reported Lyme disease case numbers were 7,943 cases - NJ had the second highest number of cases in the nation with 1,074 and New York had the highest numbers (See
1990 LDA Map
). At that time, two groups of patients and doctors in Northern and Central NJ were already loosely organized and advocating for Lyme patients - the latter group formed the basis for LDA, which was then formally incorporated as Lyme Disease Association of Central Jersey Inc.
As cases grew, the organization became the Lyme Disease Association of New
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Drs. Nick Harris & Terry MacKnight founders of
ILADS
(center), flanked by LDANJ Officers Pat Smith & Corey Lakin at a PA Congressional Forum.
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Jersey Inc. and funded some of the first publicly funded Lyme research in the country on Lyme PCR published in peer review, and some of the first Lyme laws in the country were developed here and passed in NJ (View
the State Bills Chart
). In 1997 Pat Smith was elected President of LDANJ (Now the LDA).
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The thirteenth meeting of the Tick-Borne Disease Working Group (TBDWG) was held online on April 27, 2020, from 9:00 a.m. to 12:30 p.m., ET. This meeting was open to the public, with request to comment accepted by April 19, 2020.
The Working Group voted on the various
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recommendations for each agency that are to be brought forward in the TBDWG Report that is to be submitted to Congress. Working Group members engaged in a heated discussion regarding one recommendation that,
"if the CDC posts any Lyme treatment guidelines, that they include guidelines on persistent Lyme disease.”
Pat Smith, Lyme Disease Association President, argued persuasively in favor of this recommendation on behalf of the chronic Lyme patient community. However, after the vote to pass the recommendation, some members wanted to change votes. Read the
full meeting recap
including the bizarre events that ensued.
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Drs. Richard Horowitz and Phyllis Freeman, and James Bruzzese have published a case report, “Efficacy of glutathione therapy in relieving dyspnea associated with COVID-19 pneumonia: A report of 2 cases.” The report, published in Respiratory Medicine Case Reports, evaluates two patients with Lyme disease and COVID-19.
The authors concluded, “Oral and IV glutathione, glutathione precursors (N-acetyl-cysteine) and alpha lipoic acid may represent a novel treatment approach for blocking NFKappaB and addressing 'cytokine storm syndrome' and respiratory distress in patients with COVID-19 pneumonia.”
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Dr. Richard Horowitz, co-author of the study.
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Watch video
of 5 LLMDs, including Dr. Horowitz, discussing Lyme and COVID-19.
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The International Lyme and Associated Diseases Society (ILADS) announced they are launching
One Health Lyme
, a new registry and crowd-solving platform for medical care providers treating Lyme and other Tick-borne diseases (TBD).
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Studies Seek Participants
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Other Recent News from LDA's Website:
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Shop on either of these and a portion of the sale will go to LDA:
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888-366-6611 Toll Free Info Line
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