December 28, 2020
Success in 2020: Help LDA Work for You in the New Year!
To: Lyme Community & the Public   From: LDA President Pat Smith

The Lyme Disease Association, Inc. (LDA) has been working for Lyme and tick-borne diseases (TBD) for 30 years, with individuals who are patients and family members of patients driving the programs. We care about you, your family, your friends, your pets, who have or might acquire Lyme disease and other TBD. That is why ~97% of our funds generally go directly to programs. We continue to have no employees to keep administrative costs down, and we utilize consultants to provide expertise as needed. Guidestar.org designates LDA as a charity at its highest level committed to transparency, Platinum. For 15 years, LDA has been designated as a national charity included in the Combined Federal Campaign (CFC) lists for federal employees workplace giving.

Over time, LDA has

  • partnered to help establish the endowed Columbia University Lyme & Tick-Borne Diseases Research Center 13 years ago.

  • awarded 145+ education grants over time to other Lyme organizations/institutions who are providing programs materials, and help to patients (2020 grants to be awarded by end of year).

  • partnered with Columbia University annually to provide 20 Continuing Medical Education Conferences designed for doctors and researchers and public (2020 had to be cancelled).

  • provided free downloadable LDA brochures from the website and brochure ordering for shipping costs. 

  • provided a free online nationwide doctor referral system (a state-of-the-art searchable system to be available in 2021).

  • provided language included in the 2020 Congressional Lyme Caucus letter to the Subcommittee on Labor HHS, Education & Related Agencies House Committee on Appropriations.

  • provided language included in the 2020 Congressional Lyme Caucus letter sent to Subcommittee on Defense House Appropriations for funding for the Congressionally Directed Medical Research Program (CDMRP).

  • helped achieve in 2020 the passage by the House of amendment #587 to the National Defense Authorization Act, which “Requires the GAO to conduct a study of possible experimentation of ticks, insects, or vector-borne agents by the DOD between 1950 and 1977 for use as a bioweapon.”

  • through the LDA President, waged an epic battle on the HHS Working Group to stop the suppression of chronic Lyme disease information in the 2020 Report to Congress, view TBDWG articles.

  • through the LDA President, on the CDMRP Programmatic Panel, fought for DoD grants for Lyme-related projects.
Please donate to LDA today. Help us provide a healthier New Year for people everywhere. Donations are tax-deductible to the fullest extent allowed by law.

Thank you & Happy, Healthy 2021.
Project Lyme - Hosted Webinar
Dr. Robert Bransfield and LDA President Pat Smith spent two hours discussing all aspects of the new IDSA Lyme Guidelines from how they were developed, differences from prior guidelines and how they impact patients and treating physicians. The Zoom program was hosted by Project Lyme, a NYC non-profit with Noah Johnson moderator.

Pat Smith ~
"Doctors who treat using ILADS guidelines are often investigated by medical boards and charged with malpractice."

"Over decades, treating doctors have lost licenses, have been fined, been monitored, or have not been allowed to diagnose and treat Lyme disease."

"Hospitals have threatened their privileges, insurers have threatened them from removal from plans if they treated long-term."

Dr. Bransfield ~
"Standard of care is established by the physicians who actually treat the illness, not the physicians who dismiss the illness. The disclaimer is critical in pointing out guidelines assist, but do not dictate assessment, treatment."

LDA Pres: Last Remarks to Working Group on Suppression of Chronic Lyme
On her last day as an HHS Working Group (WG) member, after serving 2 terms, Lyme Disease Association President Pat Smith addressed at the Dec. 2, 2020 online WG meeting, her concerns about the procedures of the 2019-2020 Working Group and her concern that the interests of patients were not well served by the group. Listen to Audio Comments

Pat Smith’s verbal comments may have varied slightly from written ones below (made after thanking many)

PROBLEMS: “Unfortunately, and I would be hypocritical if I said otherwise, despite these efforts, this report will do little to help patients. It was flawed from the onset; the WG member selection was cloaked in secrecy, about who they were. If we did find out, we were not permitted to release names. When IDSA unilaterally publicly announced the appointment of Eugene Shapiro to the WG, speculation was rampant as to who was really in charge of this WG. The handwriting was on the wall. It was no surprise when Dr. Shapiro, an author on the last IDSA guidelines, was permitted, without WG discussion or knowledge, except by Chairman Walker, to give his proxy vote to Walker, when he missed meetings, thus violating the concept of having members with diverse viewpoints sitting at the same time, same meeting, in public under FACA, having discussions to reach consensus on a report to Congress.”

“Since Meeting 1, when Chairman Walker, a Rickettsia expert, announced that Lyme had already been done by the first WG, and this WG would do a brief update on Lyme and concentrate on other TBDs, it was clear the patient interests would be targeted. Each meeting the patient chapter was rigorously scrutinized and held to a different standard than the other chapters.”

“Attempts were first made behind the scenes to allow anyone to write a minority report before any consensus vote was taken, although through a vote, the majority of the WG did not allow that to happen. 2 weeks ago, the tenor of the report discussion changed to an entire rewrite of our [Patient] Chapter, devolving into a real “food fight.” A motion to keep the Chapter as it was, passed 8-6. Three minority reports have been produced for that Chapter, including the 3 government agencies objections−CDC, NIH, FDA.”

WHO’S IN CONTROL: “The government agencies have been forced to take a public stand against the Patient Chapter, dismissing chronic Lyme disease and continuing the denial of treatment to sick Lyme patients, alongside their partners in a powerful medical society, one whose new Lyme guidelines were just released two days ago. Their public talk has centered on what is good for the patient, but their decisions do not reflect that sentiment. The question thus becomes, whose interest was this panel designed to serve: those of the patients who for two decades fought to pass the enabling legislation for this panel to help focus on their plight, chronic Lyme disease, or for medical specialty society special interests.”

LYME IS MARGINALIZED: “Other diseases are treated seriously. HIV researchers developed a gold standard test within a few years, Lyme still has none. Leprosy has had more clinical trials than Lyme disease, which ranks 14th out of 15 diseases in infectious diseases trials. Within 9 months, COVID 19 had several treatments, tests and upcoming vaccines. To the Lyme patients, I am so sorry you have been again marginalized by those charged with your health, but we gratefully thank any current Working Group members who worked hard to provide the help you so desperately need.”

CLOSING: I leave you all with a quote from the late Issac Asimov, noted author: “Your assumptions are your windows on the world. Scrub them off every once in a while or the light won’t shine in.”  These windows haven’t been scrubbed in almost 46 years. 

Dr. Kenneth Liegner, Co-Author
In a retrospective review on the use of Disulfiram as a repurposed drug in the treatment of Lyme and Babesiosis, most patients experienced benefits with regard to their symptoms. It was found that although patients taking higher doses
experienced an increased risk for adverse reactions than the low dose patients, they were also more likely to show “enduring remission” which is defined as remaining clinically well for ≥6 months without further anti-infective treatment. Adverse reactions from disulfiram treatment observed in the high-dose group were fatigue (66.7%), psychiatric symptoms (48.5%), peripheral neuropathy (27.3%), and mild to moderate elevation of liver enzymes (15.2%). It was also found that patients with co-infection of babesiosis and bartonellosis tended to require higher doses of disulfiram to achieve clinical improvement of their symptoms.

Dr. Richard Horowitz posted the following blog on his Facebook and has given LDA permission for reprint. The LDA applauds these two courageous individuals trying to buck the system to save a life.

November 2 at 7:43 AM

I feel inspired to write a blog this am, which I would like to entitle “What it truly means to be a public servant.” It is in honor of Congressman Chris Smith from NJ. Please read the story below, and see if you agree that his action, going far above and beyond the call of duty, is why Congressman Smith is now currently serving his 20th term in Congress.

Congressman Smith contacted me several nights ago asking for my assistance. A chronic Lyme disease patient was extremely ill in a NJ hospital on a ventilator
Dr. Richard Horowitz
with COVID-19, and was on dialysis after failing traditional therapies. He called me late on Thursday evening, as he had known about my success with glutathione and ivermectin, thanks to Pat Smith, head of the LDA. He asked if I could contact the hospital and discuss with the ICU team the therapeutics that had helped my patients, as well as speak to the patient’s wife.

Virulence of Borrelia

Involves multiple channels for transmission and establishment in multiple tissues, as well as evasion of the host immune responses. 
The bacteria undergo significant changes in gene expression and multiply and spread once transmitted to the host.
These changes induce inflammatory responses that, in humans, result in clinical signs and symptoms of disease. In this review, the authors provide an overview on the ability of Borrelia burgdorferi to infect a host and the factors which decisively affect the nature or outcome of this infection that have been demonstrated in vivo, primarily in mouse models.

Acute COVID-19 has a great range of clinical severity from asymptomatic to fatal. In the absence of clinical trials and guidelines, with hospitalizations and mortality mounting, it is prudent to deploy treatment for COVID-19 based on pathophysiological principles. We have proposed an algorithm based on age and comorbidities that allows for a large proportion to be monitored and treated at home during self-isolation with the aim of reducing the risks of hospitalization and death.
Peter McCullough
Peter A. McCullough, MD, MPH

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