- History of the Lyme epidemic.
- Controversy over PTLDS vs. Persistence of infection.
- Current day activities underway to ensure ‘the history’ isn’t rewritten by the truth being revealed through current research and publications.
The following is a re-cap of what I perceive to be the shortfalls of this new bill and recommendations for improvement. For individuals that are not familiar with the issues bulleted above, there are links to information that support the claims and recommendations. Before diving into those devilish details, note the irony in the bill’s name which includes the term ‘accountability’. There is no call for accountability in the bill’s wording.
A quick Disclaimer: I’m not a legislator, physician or scientist. So, you may ask, “Why does my commentary matter?” Indeed it is a fair question. and I will clarify – this is my opinion as a patient that has been participating in Lyme Disease Activism since 2013. It is based on:
- Facts published in scientific/medical journals and books published by MDs and Journalists and accomplished Global/Government Activists.
- Information presented at Accredited Medical Conferences I have both attended and personally managed.
- Communication and collaboration with MDs that have extensive experience diagnosing and treating tick vectored infections.
- Participation on a committee called GOTCHA – The Global Oversite for Transparency in Health Care Alliance.
- Participation in and/or observation of all public meetings of the Federal Tick Borne Disease Working Group.
- Perhaps most importantly, my personal experience battling multiple tick-vectored infections that were not diagnosed in a timely fashion and therefore persist despite extensive antibiotic and supplement treatments prescribed by “experts”.
Shortfall 1: Ignoring Past Mistakes
It appears this Lyme bill was written under the assumption that prior research and previous actions were accurate and appropriate. Revisiting the history of Lyme disease and the epidemic mis-management by multiple entities is essential to drafting an effective legislation that will curb epidemic growth and bring world class diagnostics and therapeutics to the global marketplace. The following links provide a re-cap of the scientific and moral issues of the past and punch holes in the assumption that all prior decisions and actions were effective.
The History of Lyme Disease is A 42 minute Vimeo by Dr. Joseph Burrascano Jr. Dr. https://vimeo.com/306846706
$lyme – A book detailing the corruption and greed surrounding the epidemic written by Jenna Luche Thayer https://www.amazon.com/Lyme-Medical-Mortally-Corruption-Scientific-ebook/dp/B07HVNN9FG
A lawsuit : Insurers Accused of Conspiring to Deny Lyme Disease Coverage https://www.courthousenews.com/insurers-accused-conspiring-deny-lyme-disease-coverage/
Recommendation 1: Correct History
This bill should call for a congressional investigation of the actions of any and all entities which resulted in the mis-management of the epidemic. Individuals that are identified as accountable for inappropriate and/or unethical behaviors, should be permanently barred from participating in any actions spelled out in this bill. This investigation should include a re-examination/recertification of any laboratories involved in handling of infectious pathogens for diagnostics, therapeutic or research and development studies. Criminal and civil charges should be filed and prosecuted accordingly. This is called accountability.
Shortfall 2: Recommendations from The Federal Tick Borne Disease Working Group
The Lyme bill’s language and proposals rely heavily on input and outcomes of the Federal Tick Borne Disease Working Group (TBDWG). Unfortunately, there are issues with TBDWG. Including conflicts of interest, violations of sunshine laws and anti-patient biases.
The TBDWG’s key patient representative heads Lyme Disease Association (LDA) a 501c organization whose sources of funding are redacted on the 990 tax filing and therefore are unknown to the general public. LDA will be able to financially benefit from the bill as described on page 19 of the bill under the section called “GRANTS” which states: “The Secretary may award grants to or enter into contracts or cooperative agreements with, public or private nonprofit entities to carry out activities under the paragraph.” If you are not familiar with why this is problematic, read up on “dark money”. https://www.opensecrets.org/dark-moneyorganization.
Recommendation 2: Remove the recommendations of and all references to the TBDWG.
The TBDWG should be disbanded until the outcome of a congressional investigation recommended in section 1 is published and individuals accountable for any potential corruption and unethical practices are identified and charged accordingly.
Shortfall 3: Tricky Language
Language can be used to convey honesty or deceive. The most important issue (and controversy) surrounding lyme disease to date is the debate over “infection persistence vs. the false nomenclature “post treatment lyme disease syndrome” – PTLDS. PTLDS is a made up term created to sidestep the growing body of scientific evidence that late stage disseminated lyme disease is resistant to current antibiotic protocols of any duration for reasons including but not limited to the formation of persister cells, down regulation of the immune system and the stealth mechanisms of the pathogen itself. Below is a link to just one of 700 journals that provide proof of “chronic lyme”. The TBDWG adopted the term PTLDS and uses it routinely in their Congressional Report – and that is a paramount concern.
https://aac.asm.org/content/59/8/4616 Borrelia Burgdorferi, the Causative Agent of Lyme Disease, Forms Drug-Tolerant Persister Cells.
The following document by Jenna Luche Thayer (Author of $lyme) narrates how the term PTLDS can be used to restrict treatment and deny infection persistence. The adoption of the invented term PTLDS will protect insurance companies profits while leaving patients under insured and insufficiently treated. https://www.linkedin.com/pulse/attention-lyme-communitywords-matter-jenna-luche-thayer/
Page 3 of the Lyme bill, lines 3 – 6 states: “Development of treatments to cure or improve the lives of those who are infected with Lyme disease or other tick-borne disease or who suffer from a tick induced disorder.” The wording “other tick induced disorder” appears to be a deception and placeholder for PTLDS. The term “other disorder” is used ten times in the bill.
Recommendation 3: Remove the terms PTLDS and “other disorder”.
Replace the terms PTLDS and “other disorder” with late stage disseminated lyme disease, persistent lyme disease or treatment resistant lyme disease.
Shortfall 4: Controlling the Narrative by Dominating Diagnostics/Treatment Options
Page 12, of the Lyme bills states: “The Secretary, in cooperation with the Director of the Office, and acting through the Directors of the Centers for Disease Control and Prevention and the Director of the National Institutes of Health shall conduct and support research to provide for the timely evaluation of promising new and improved diagnostics methods including direct detection tests, antibody-based tests, and tests based on bio signature and biomarker profile to make a specific diagnosis or aid in differential diagnoses. “
This sounds good. There is nothing inherently wrong with funding research for an ideal diagnostic solution. However, there are already diagnostic methods superior to the current CDC/IDSA recommended two-tier ELISA Western Blot which is the “gold standard” accepted and covered by insurance plans. It has been scientifically well documented that this method is as effective as a coin toss. Unfortunately, the superior tests are NOT covered by insurance and financially out of reach for most patients. This is an example of rigging the diagnostic game. Below is an article about the lawsuit filed against the CDC for doing just that. The suit charges the CDC “of employing false, pseudo-scientific theories in order to justify its own anti-consumer actions aimed at perpetuating Lyme disease testing by a flawed technology.” https://www.apnews.com/f018456adcbf4d5c94596963b04fc54d
The other questionable issue with the bill’s diagnostic research language is the ‘biomarker profile’ language. John Aucott, Chairman of the TBDWG has a patent for biomarker technology. (There is that conflict of interest issue again.) Read the document below to connect the trail of breadcrumbs linking PTLDS, the bill’s language of “other disorder” and John Aucott’s filed patent for biomarker. Aucott, filed a patent for a biomarker known as CCL19. Question: Will this biomarker be used to determine treatments for those designated as having PTLDS? Of utmost concern is that MDs will be forced to re-lable patients that have persistent infections with PTLDS (the “other disorder” ) and discontinue treatment of later stage neurological and cardiac infections. The concern is based on prior actions outlined in both law suits linked above that name the CDC as a defendant.
Recommendation 4: Provide patients with a financial safety net by requiring health insurance companies extend coverage for all diagnostics and treatments.
Since at this time there is no 100% accurate diagnostic, add language to this bill that mandates insurance carriers cover all available diagnostic options allowing MDs to choose the test they think is best for the patient. In addition, insert language that acknowledges the scientific body of evidence confirming infection persistence and congenital infection. Mandate insurers cover treatment as recommended by physicians without arbitrary guidelines outlined in the book SLYME referenced in section 1 until such time a 100% effective therapeutic is validated and brought to market at which time Congress can re-visit regulations for insurance coverages of therapeutics.
Shortfall 5: – Censorship Disguised as Collaboration
Page 33 section 8 of the Lyme bill calls for a Common Research Bibliography. News Flash: We already have one. It’s called the internet. Specifically, the bill says: “The Secretary, in coordination with the Director of the Office, shall direct the Director of the Agency for Healthcare Research and Quality to assemble a bibliography of peer reviewed literature of tick-borne diseases and disorders in the United States, as well as for bartonellosis from whatever cause, appropriately organized for use by the scientific community treating physicians and the public. The bibliography should include literature relating to possible mechanisms of persistent infection with Borrelia Burgdorferi or other types of Borrelia. In conducting and supporting activities under this section, the Secretary shall give priority to Lyme disease and other tick borne diseases based on assessments of disease burden in the United States.
This clause will enable a few (questionable) people to cherry pick research that favors the TBDWG recommendations and term PTLDS. The qualifying term “possible persistence” casts doubt on and discredits the scientific proof of infection persistence. This will permit selected individuals to censor research proving infection persistence and congenital infection -both of which are being experience by patients and documented by research worldwide. Congenital infection has been scientifically proven and was incorporated in the World Heath Organization ICD 11 Diagnostic Codes. https://globallymealliance.org/news/ground-breaking-recognition-lyme-borreliosis-11th-international-classification-diseases/ Unfortunately the code for congenital lyme was recently removed under questionable circumstances that are currently under investigation.
Recommendation 5: No Common Research Repository
The call for a Common Research Repository should be struck from the bill entirely as it is an over-reach of government authority and waste of tax payer dollars. Remove the term “possible persistence” from the bill and replaced with terms such as treatment resistant infection, persistent infection etc.
Shortfall 6 – HHS Control Physician Education & Training
Page 23 section D of the Lyme bill states: “The secretary shall carry out a physician education program that addresses the full spectrum of scientific research related to Lyme Disease and other Tick-borne diseases and disorders….”
Giving the HHS control of physician education is government over-reach and wasteful use of tax dollars. Physician training should be designed and implemented by Universities that teach medicine. Organizations such as International Lyme and Associated Disease Society and the Lyme Disease Association have been a stop-gap measure providing physician education about tick-vectored infections because the institutions that should be have dropped the $lymy green ball.
Recommendation 6: Demand Medical School Curricula Revisions.
Rather than divert tax dollars to physician training dictated by the government, the bill should include language that requires all medical schools to set specific measurable educational goals for updating curricula by a specified date to reflect current research discoveries using complete and full access to all scientific research available without censorship. This should include continuing education programs for current licensed physicians.
Shortfall 7 – Exclusion of Global Expertise
Tick vectored infections are not isolated to the US. It is a global issue. There is no call for involvement of other global experts or the World Health Organization in this bill. The recent removal of the Congenital Lyme ICD code from WHO ICD Code 11 is evidence that the US and other endemic Nations should pool resources and funds to address the issues collectively.
Recommendation 7 – Replace the TBDWG with an International Panel
The bill should include the formation of a Global team that would replace the TBDWG upon the conclusion of a Congressional Investigation into the US’s mismanagement of the epidemic. The panel must bar the participation of those with financial conflicts of interest or prior involvement in immoral/illegal actions identified through congressional investigation. The global panel should comprise equal parts scientists, physicians, and patients. Let’s leave the government out of it, shall we?
There are a lot of unsavory entities and individuals make gobs of money off the human suffering caused by the debacle that is the Lyme epidemic. I see no harm in pharmaceutical companies and scientists making profits from erectile disfunction medications and other discoveries that improve the quality of life. But given the epidemic of greed, income inequality and well documented prior bad acts, perhaps we should draw a line on profiting off of zoonotic, infectious diseases that are linked to mental illness an suicide. The award-winning Lyme documentary Under Our Skin, and its sequel, Under Our Skin 2: Emergence are now both available for free viewing by members of Amazon Prime. One of Under Our Skin’s #assets is it calls out prior legislation that enabled this mess to unfold in the first place. If you haven’t seen it, I highly recommend you give it a watch.