Post Treatment Lyme Disease Syndrome jeopardizes Lyme patients, including celebrities

Jenna Luché-Thayer. July 18, 2020

Friends,

Since 2018, the US Federal Tick Borne Diseases Working Group (Working Group) has actively promoted a term that jeopardizes persons suffering from Lyme disease, even celebrities like basketball star Elena Delle Donne.

This term is Post Treatment Lyme Disease Syndrome (PTLDS). The term has no scientific basis and was fabricated by the Infectious Diseases Society of America (IDSA) in what appears to be an attempt to deny the well documented evidence of persistent Lyme infection, or chronic Lyme.

Most valuable player Donne, makes the following statements in her recently published letter, “I take 64 pills a day … That’s 25 before breakfast, another 20 after breakfast, another 10 before dinner, and another 9 before bed…  Longterm, taking that much medicine on that regular of a regimen is just straight-up bad for you. It’s literally an elaborate trick that you play on yourself — a lie that you tell your body so it keeps thinking everything is fine. It’s a never-ending, exhausting, miserable cycle.”

Donne is on record saying she “prefers the term Chronic Lyme to Post-Treatment Lyme Disease Syndrome with a current active infection”.

Of course she does, as would any person with a microdot of logic, because she is clearly NOT post treatment. Donne is in treatment everyday with 64 pills to counter threatening complications from active infection.

PTLDS is misused every day to deny medical treatment for Lyme patients and to deny any disability caused by the infection. The scientific fraud of PTLDS is based upon the denial of persistent infection and that patients suffering from debilitating, disabling and even life threatening Lyme complications do not require medical treatment, nor consideration for their medical or disability status. 

In this regard, the Working Group completely fails the Lyme community. The Working Group promoted PTLDS no less than five times in their 2018 report to Congress. PTLDS is noted on pages 7, 48, 56, 77 and 78 of their report, making it their most promoted theory as to why millions of persons across the globe are debilitated and disabled from Lyme disease.

The Working Group Report states (page 77) “Physicians cannot even agree on what to call the illness: Some call it chronic Lyme disease; others call it post treatment Lyme disease syndrome; and still others claim the illness “is all in their patients’ heads.” … This Report does not represent a particular stance on these issues.”

This is a falsehood. The Working Group has 'taken a stance on this' and they have chosen PTLDS again and again. 

In fact, promotion of PTLDS by soon-to-be Working Group voting members began even before the formation of the Working Group.

Working Group member Pat Smith of the nonprofit Lyme Disease Association (LDA) promoted PTLDS in the 2015 LDA/Columbia Lyme Conference (Warwick, Rhode Island). John Aucott (the soon-to-be the Chair of the Working Group) was a speaker at this LDA conference. LDA promoted a widely disseminated poster wherein Aucott “affirms that chronic Lyme disease is synonymous with PTLDS.”

To be clear, PTLDS is definitely not synonymous with chronic Lyme. ‘Post treatment’ does not equate with the need for ongoing treatment for chronic infection.

In 2018, the CDC Lyme website cited articles stating that ‘medically unexplained symptoms’ (MUS), a piddling form of hypochondria, was the reason for ongoing Lyme symptoms. As of July 18, 2020, the CDC website on PTLDS continues to reference articles that use the roundly discredited notion of MUS.

The promotion of PTLDS likely contributed to the rejection of basketball star Donne’s request for paid leave. Donne made this request because her immune system is compromised from chronic Lyme infection, making her at high risk for adverse outcomes from Covid-19. In her interview with Today, Donne states her employer believes she is “faking a disability” and “trying to 'get out' of work and still collect a paycheck."

Is any person or institution who uses and promotes PTLDS a true friend to the Lyme patient community? Does their embrace of PTLDS mean they are misguided or incompetent?

Do they recognize that PTLDS smears the character, integrity, and dignity of those suffering from persistent Lyme infection and results in patients being denied medical care, disability benefits and even salaries?

Is it possible they don't know the baseless hypochondria inferred by PTLDS has violated the human rights of many in the US and across the globe?

Please stay safe.

Faithfully,

Jenna

Jenna Luché-Thayer. 35+ years working globally on the rights of the marginalized. Former Senior Advisor to the United Nations and the US Government. Director, Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes. Founder, Global Network on Institutional Discrimination, Inc. —Holding institutions accountable for political and scientific solutions. 

Author of $Lyme. Email [email protected] website: www.gnid.world