Madison Area Lyme Support Group

In January 2022, the U.S. Council of State and Territorial Epidemiologists (CSTE) published a revision to its 2017 Lyme disease case definition. This definition will soon be integrated into the physician reporting form that is used by the Centers for Disease Control (CDC) to classify, count, and track Lyme disease cases consistently across the country.

The annual Lyme disease case count is an important metric for allocating government research dollars and staff resources. With about 476,000 new cases a year and growing, the CDC’s previous case definition and reporting requirement was already burdensome for both physicians and local health departments. (In 2016, Massachusetts modified the CDC reporting criteria because of this. In 2008, New Jersey wrote about the burdens of the surveillance criteria here.) Unfortunately, the 2022 revision and the public health burden of the COVID-19 pandemic may only make this situation worse. (See link for article & references)

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SUMMARY:

• The 2 biggest changes are the inclusion of Borrelia mayonii in the Lyme case count, and the option to use a cheaper, simpler test in the 2nd part of the standard 2-tiered testing.
• The problems are with these changes are:
  • There are no FDA-approved Bm tests and traditional testing only picks up about half of all cases.
  • Replacing the Western blot with antibody EIA tests, while cheaper and easier to interpret, eliminates useful clinical data that can shed light on late-stage disease. The revision only uses the IgG or “late stage” EIA test which doesn’t acknowledge the dormant and relapsing nature of Lyme.
  • The EIA tests must be FDA approved which will discourage accurate, validated testing done at smaller specialty labs.  These smaller CIA-certified labs are what LLMDs use, but are shunned by mainstream medicine due to this “FDA-approved” issue.
• Leading to further under-reporting is utilizing CDC data that is more than a year old as well as utilizing a “reporting decision trees” for low and high incidence cases areas and other complicated matrices when Lyme has been detected in ALL 50 states and the District of Columbia and the fact people can get infected while traveling.
• The positive changes include:
  • Inclusion of symptoms other than Lyme arthritis such as neurological symptons.
  • Highlighting the fact surveillance case definitions are not to be used for making clinical diagnoses or treatment decisions.
• Overall, the CSTE & CDC have added burdensome complexity and have ignored new sources of data and analytical tools to make case counting more accurate.

Newby feels that the CDC’s Data Modernization Initiative, a disease tracking system, is a light at the end of the tunnel.  I disagree, here’s why:

• This multi-year, billion-plus dollar effort to ‘modernize’ core data and surveillance infrastructure will effectively monopolize/centralize data giving the corrupt and inept CDC far too much power.  They have clearly demonstrated their inability to effectively deal with a ‘pandemic’ and have numerous conflicts of interest.  The agency, along with the FDA & NIAD should be completely disbanded.  We need to learn from COVID and stop history from repeating itself.
• The following excerpt from the CDC website is telling: “CDC is connecting with partners from across public health and the private sector – including in healthcare, research, and academia — to make sure we get this right.”
  • This is shorthand for “The CDC will dominate & control partners in the private sector, healthcare, research, and academia to do what we want.”  This domination and control has been going on for over 40 years with Lyme/MSIDS and is blatantly on display during COVID and now with Monkeypox as well, if we don’t wake up.
• Lyme/MSIDS patients and advocates daily feel the results of centralized/controlled medicine as it severely limits and hampers our ability to get diagnosed and treated.  The similarities between the handling of Lyme and COVID can not be overstated.
  • Politicization of disease puts undue pressure on physicians, making them afraid to treat patients. Doctors would prefer to diagnose you with anything but Lyme/MSIDS – it’s safer.
  • This fact is clearly seen by the formation of ILADS which is comprised of health professionals whom disagree with how Lyme/MSIDS is handled and have chosen to break off and form their own group with their own education and training to train physicians and to give patients a better way.
  • Yet, Lyme patients and advocates continue to want to crawl in bed, support, and even fund science with the very enemy that is suppressing true science and patient help.

Please see my comments after this article for more on this matter.

It defies all logic and reason, but this is the current state of affairs unless we wake up and smell the coffee.