As a result of NH House Bill 490 a committee was established to study the limitations of serological diagnostic tests in determining the presence or absence of Lyme and other tick-borne diseases and the development of appropriate methods to educate physicians and the public with respect to the inconclusive nature of prevailing test methods.
I made the following statement in the December Zoom meeting:
“Current FDA approved testing is no better than a coin toss”
We will present documentation in ongoing meetings to support this claim.
Below is a 15yr old example: (Aucott was past Chair of the TBDWG and Auwaerter was past president of the IDSA)
Two-Year Evaluation of Borrelia burgdorferi Culture and Supplemental Tests for Definitive Diagnosis of Lyme Diseasehttps://jcm.asm.org/content/43/10/5080
Peggy Coulter, Clara Lema, Diane Flayhart, Amy S. Linhardt, John N. Aucott, Paul G. Auwaerter, and J. Stephen Dumler
Published 2005
Comparisons with qualitative clinical assessments
“Overall, initial serologic tests agreed with possible or probable clinical Lyme disease diagnosis in only 50% (40/80) of cases.” [COIN TOSS]
Lyme Study Committee Home Page:http://www.gencourt.state.nh.us/statstudcomm/details.aspx?id=1515&rbl=1&txtbillnumber=hb490
Under the New Hampshire Right-to-Know Law, documents shared with the Lyme Study Committee members must be made public.
The following list of documents have been posted to the Committee Website.
The first two letters below are extremely disturbing and should be shared widely:
1. Dr. Richard Shulik’s 2010 testimony for House Bill 1326 (passed as HB 295)
http://www.gencourt.state.nh.us/statstudcomm/committees/1515/documents/Dr.%20Richard%20Shulik’s%202010%20testimony%20for%20House%20Bill%201326%20(passed%20as%20HB%20295).msg.pdf
Ten years ago, Dr. Richard Shulik (Clinical psychologist) reported on the experiences of Lyme patients from his practice in Londonderry and the difficulties obtaining treatment. Dr. Shulik’s comment: “To say the least, these are nightmarish experiences which I would not wish upon anyone.”
2. Registered Complaint to the NH Dept of Health
http://www.gencourt.state.nh.us/statstudcomm/committees/1515/documents/Registered%20Complaint.pdf
I sent this registered letter to Dr. Jose Montero, past Director of the NH Department of Health in 2010 and coordinated an onsite meeting which included Dr. Lynn Durand, currently a member of our study commission. The letter identifies five cases where a negative Elisa led to patient harm. These cases were summarized by a Lyme treating clinician here in New Hampshire.
3. LYME DISEASE BILL BECOMES LAW
http://www.gencourt.state.nh.us/statstudcomm/committees/1515/documents/LYME%20DISEASE%20BILL%20BECOMES%20LAW.pdf
House Bill 295 (Passed in 2011) protects physicians’ rights to determine the most appropriate treatment protocol for their patients..
4. 10 Things you Should Know About New IDSA Guidelines
http://www.gencourt.state.nh.us/statstudcomm/committees/1515/documents/10%20Things%20you%20Should%20Know%20About%20New%20IDSA%20Guidelines.pdf
A reposting of the article from Lorraine Johnson, CEO of lymedisease.org
5. Letter Regarding Testimony Submitted
http://www.gencourt.state.nh.us/statstudcomm/committees/1515/documents/Letter%20Regarding%20Testimony%20Submitted.pdf
Notice of my letter to the editor of the BMJ published June 2020 (Evidence of persistent infection after extensive antibiotic treatment)
6. NH DHHS Health Alert
http://www.gencourt.state.nh.us/statstudcomm/committees/1515/documents/NH%20DHHS%20Health%20Alert.pdf
DHHS is instructing the physician not to run the Western blot after a negative Elisa. So how do we rule out a false negative Elisa?????
7. Galaxy Diagnostics Launches the Most Sensitive Test Available for Direct Detection of Lyme Disease
http://www.gencourt.state.nh.us/statstudcomm/committees/1515/documents/Galaxy%20Diagnostics%20Launches%20the%20Most%20Sensitive%20Test%20Available%20for%20Direct%20Detection%20of%20Lyme%20Disease.pdf
“Galaxy validation data (unpublished) shows that the Nanotrap® Urine Test will often confirm active infection in patients with negative TTT (Two-Tiered Testing) results.”
8. Written Public Comment
http://www.gencourt.state.nh.us/statstudcomm/committees/1515/documents/Written%20Public%20Comment.pdf
Patient testimony across America is describing an experience that doesn’t resemble anything that our public health officials are telling us about Lyme disease. The truth about this life-altering/life-threatening infection remains well hidden from the public through an elaborate racketeering scheme now on trial in Texas District Court.
9. TBDWG Meeting Nov 17 9am Online
http://www.gencourt.state.nh.us/statstudcomm/committees/1515/documents/TBDWG%20Meeting%20Nov%2017%209am%20Online.pdf
Written public comment directed to Dr. David Walker, Co-Chair of the Tick-Borne Disease Working Group. During the July 8th meeting he was recorded saying that persistent infection is a “religious belief.”
10. TBDWG October 27, 2020 – Written Public Comment
http://www.gencourt.state.nh.us/statstudcomm/committees/1515/documents/TBDWG%20October%2027,%202020%20-%20Written%20Public%20Comment.pdf
The CDC’s refusal to acknowledge persistent infection has left hundreds of thousands (if not millions worldwide) in a debilitated state as the disease has been misclassified decades ago as a low-risk and non-urgent health threat. (Hard to catch and easily treated) Failure to recognize this pathogen as an antibiotic resistant/tolerant superbug leaves everyone in our state of New Hampshire vulnerable to its incapacitating outcome.
11. HB490 included a section on available treatment protocols
http://www.gencourt.state.nh.us/statstudcomm/committees/1515/documents/HB490%20included%20a%20section%20on%20available%20treatment%20protocols.pdf
Indirect serologic testing as you know is looking for elevated antibodies to the pathogen in question. Since humans do not produce antibodies against Borrelia (the causative agent of Lyme disease) for 4-6 weeks after a tick bite, relying on antibody production misses early detection. Antibody tests cannot be used to gauge treatment failure or success.
12. Tuttle directs pointed questions to TBD Working Group member Shapiro
http://www.gencourt.state.nh.us/statstudcomm/committees/1515/documents/Tuttle%20directs%20pointed%20questions%20to%20TBD%20Working%20Group%20member%20Shapiro.pdf
Carl Tuttle, a long-time Lyme activist from New Hampshire, gave the following remarks by telephone to the Tick-Borne Disease Working Group on Sept. 15.
13. House Bill 363 and the NH DHHS
http://www.gencourt.state.nh.us/statstudcomm/committees/1515/documents/House%20Bill%20363%20and%20the%20NH%20DHHS.pdf
In 2015 House Bill 363 required the NH DHHS to include a link to the International Lyme and Associated Diseases Society on its Internet website. Although the DOH adhered to those requirements, they do not have any references to ILADS in their official Health Alert going out to our medical community.
14. New Hampshire State House Hearing of 01.28.2010
http://www.gencourt.state.nh.us/statstudcomm/committees/1515/documents/New%20Hampshire%20State%20House%20Hearing%20of%2001.28.2010.pdf
Dr. Shulik’s testimony followed by a letter to the Editor-in-Chief of The New England Journal of Medicine. What we have here is collusion to deny a chronic disease; a disease that has spiraled out of control into a 21st century plague. The medical establishment has been led to believe that “chronic Lyme” is a fictitious disease and hundreds of thousands perhaps millions of patients around the globe are left untreated/undertreated and suffering.
15. limitations of serological diagnostic tests Rep Woods letter Oct 2020
http://www.gencourt.state.nh.us/statstudcomm/committees/1515/documents/limitations%20of%20serological%20diagnostic%20tests%20Rep%20Woods%20letter%20Oct%202020.pdf
The letter calls attention to a partial list of studies identifying treatment failure through direct detection methods with some of these references dating back thirty years.
16. 2010 Letter Jose T. Montero, MD, Director
http://www.gencourt.state.nh.us/statstudcomm/committees/1515/documents/2010%20Letter%20Jose%20T.%20Montero,%20MD,%20Director.pdf
Official registered complaint filed with the NH Dept of Health. Here we are ten years later!
17. Antibiotic treatment duration for Lyme disease
http://www.gencourt.state.nh.us/statstudcomm/committees/1515/documents/Antibiotic%20treatment%20duration%20for%20Lyme%20disease.msg.pdf
“…longer treatment durations were associated with better treatment response—with most high responders and well patients reporting treatment durations of four or more months and many reported durations exceeding a year. As the chart below reveals, those treated for less than a month were unlikely to report improvement.”
18. DDD CT, antibiotics-Oct 2020, 09-00725
http://www.gencourt.state.nh.us/statstudcomm/committees/1515/documents/DDD%20CT,%20antibiotics-Oct%202020,%2009-00725.pdf
Efficacy of Double‐Dose Dapsone Combination Therapy in the Treatment of Chronic Lyme Disease/Post‐Treatment Lyme Disease Syndrome (PTLDS) and Associated Co‐infections: A Report of Three Cases and Retrospective Chart Review
19. 2009 Letter to Quest Diagnostics
http://www.gencourt.state.nh.us/statstudcomm/committees/1515/documents/2009%20Letter%20to%20Quest%20Diagnostics.pdf
Could you please tell me why Quest Labs’ Western blot Lyme test doesn’t include band 31 and 34? Is it possible that your exclusion of these bands is missing many Lyme cases since band 31 and 34 are highly specific to Borrelia burgdorferi and were originally chosen for vaccine development?
20. EvidenceofPersistence-V2
http://www.gencourt.state.nh.us/statstudcomm/committees/1515/documents/EvidenceofPersistence-V2.pdf
The following is a list of over 700 peer reviewed articles that support the evidence of persistence of Lyme and other tick-borne diseases. It is organized into different categories—general, psychiatric, dementia, autism and congenital transmission.
21. Treatment Delays and the Increase Risk of Persistent Illness in Lyme Disease
http://www.gencourt.state.nh.us/statstudcomm/committees/1515/documents/Treatment%20Delays%20and%20the%20Increase%20Riskof%20Persistent%20Illness%20in%20Lyme%20Disease.pdf
From the Johns Hopkins study:
“One-third of Lyme disease patients report delayed treatment of greater than 30 days”
Carl Tuttle’s comment: Humans do not produce antibodies to Lyme disease for 4-6 weeks after a tick bite so serology has always been the wrong diagnostic tool.
22. The Staggering Cost of Lyme Disease and Other Tick-Borne Illnesses
http://www.gencourt.state.nh.us/statstudcomm/committees/1515/documents/The%20Staggering%20Cost%20of%20Lyme%20Disease%20and%20Other%20Tick-Borne%20Illnesses.pdf
From the IgeneX survey:
Lyme disease has been detected in all 50 states. The high cost of Tick-Borne Disease misdiagnosis.
According to the survey:
· 45% of patients needed more than three years to obtain the proper diagnosis
· 65% of patients were forced to quit a job or cut back on their hours due to their symptoms
· 24% of patients saw more than ten doctors before receiving a proper diagnosis
· 86% of patients suffer from long-term side effects from not having been diagnosed sooner
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For more: https://madisonarealymesupportgroup.com/2020/09/25/why-should-we-care-about-lyme-disease-a-colorful-tale-of-government-conflicts-of-interest-probable-bioweaponization-and-pathogen-complexity/
https://madisonarealymesupportgroup.com/2020/04/26/cdc-playbook-learning-from-lyme/
https://madisonarealymesupportgroup.com/2020/07/30/how-the-cdc-uses-their-own-guidelines-to-rig-the-system/
https://madisonarealymesupportgroup.com/2018/03/17/nice-lyme-guidelines-human-rights-of-lyme-patients/
Fig. 1: Prepared by LDA, Jan. 2021
Madison Area Lyme Support Group 