Final Remarks to the NH Lyme Disease Study Commission

Please see my final statement below from the last meeting held Oct 4, 2021.

Our study commission has concluded with a final report to be sent to the Governor within the next few weeks which will be distributed to the public and medical community. I will be posting a copy of that report here on this petition site.

The Commission’s focus was on the diagnostic tests:
http://gencourt.state.nh.us/legislation/2020/HB0490.html

“RSA 141-C:6-a, relative to a commission to study the use and limitations of serological diagnostic tests to determine 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.”

Final Remarks to the NH Lyme Disease Study Commission

---------- Original Message ----------

From: CARL TUTTLE <runagain@comcast.net>
To: Leah Cushman <Leah.Cushman@leg.state.nh.us, Jerry Knirk <Jerry.Knirk@leg.state.nh.us>, Tom Sherman <Tom.Sherman@leg.state.nh.us>, Jeb Bradley <Jeb.Bradley@leg.state.nh.us>,
Cc: All members of the NH Lyme Disease Study Commission
Date: 10/06/2021 9:42 AM
Subject: Corrected Final Statement for the Lyme Disease Study Commission

To the Lyme Study Commission Members,

Please see the corrections below to my final statement which was read at our last meeting.

Carl Tuttle's closing remarks:

Over the course of this Study Commission, we have heard from numerous front-line treating physicians across the country who have treated thousands of Lyme patients. These physicians all agree that serology is unreliable and a negative test result does not rule out Lyme disease.

Dr. Horowitz published a study of 200 late-stage chronic Lyme patients and found that these patients were IgM positive but had negative IgG results on their Western blots. [1] Johns Hopkins published similar results in 2015. [2]

During the Dearborn Conference in 1990 (Known as Dearborn 1) the following statement was recorded by Rahn & Malawista of Yale University:

“In some patients, the IgM antibody level remains elevated for many months or IgM antibody reappears late in illness; these phenomena predict continued infection.”

During the Dearborn Conference in 1994 (Known as Dearborn 2) the following case definition was established to support vaccine development:

"IgM WB is considered positive when at least two of the following three bands are present: 24 kilodalton (kDa) outer surface protein C (OspC)*, 39 kDa basic membrane protein A (BmpA), and 41 kDa (Fla). ***Disregard IgM results for specimens collected >30 days after symptom onset."***

Dr. Donta who has also treated thousands of patients has found that those who have a reaction to band 23 for example which is OsPC (highly specific to Borrelia) and also reactions to the less specific band 41 which represents the spirochete’s flagella are markers for active infection without meeting the CDC case definition.

I decided to put this newfound information to test and asked patients who testified on Aug 23rd to send me copies of their Western blots.

Kim Parker had a fully positive IgM result with 3 out of 3 positive CDC bands but no IgG bands whatsoever. Her test results match the Dearborn 1 Conference conclusion which was tossed out in 1994.

Ashley Lynch who testified from her wheelchair had reactions to band 31 OsPA (highly specific to Borrelia) along with band 41. Similar to what Dr. Donta had pointed out.

My wife’s Western blot had only two positive bands, once again 23 and 41 as Dr. Donta has mentioned.

As Laura Hovind pointed out in her testimony and supporting documentation, [3] the sickest of the Lyme patient population do not produce a robust immune response as those with the swollen knee presentation (Allen Steere disease) This was reiterated by Dr. Raymond Dattwyler of SUNY-Stonybrook during the FDA’s Vaccines and Related Biologics Product Advisory Committee [4] a few months prior to Dearborn 2 in 1994. Despite knowing this, the CDC went along with the case definition that we are stuck with to this day which was sanctioned by the Association of Public Health Laboratories.

No matter how many complaints have been registered [5] regarding misdiagnosis due to false negative serology over the past three decades, nothing changes. Dr. Durand and I were at this ten years ago.

The unimaginable pain and suffering are detailed in the patient testimony of Aug 23rd. [6] Thank you Rep Cushman for uploading that video to Rumble for the record.

I don’t possess the legal knowledge to determine if a crime has been committed here even though it certainly appears to be the case.

In closing I have two action items:  

1.  I would like to ask the Chair to assist with approaching the Attorney General with a possible inquiry detailing the specifics of the alleged crime.

2.    Propose legislation following Virginia’s bill requiring a disclaimer to be added to every Lyme disease laboratory report. (See Attachment) [7]

I have one final question for the Chair; After presiding over this Commission how confident are you that if you or a family member is bitten by a tick that transmits Lyme disease, you’ll receive an accurate and timely diagnosis?

Carl Tuttle
Hudson, NH

Correction: The Rahn & Malawista statement; “In some patients, the IgM antibody level remains elevated for many months or IgM antibody reappears late in illness; these phenomena predict continued infection.” was published March 15, 1991 in the Annals of Internal Medicine. [8]

Dearborn 1 was held on Nov 1-2 1990

Case Definition from the transcript:

https://www.dropbox.com/s/0qlvxkf72gu1dhl/Dearborn%201%20Case%20Definition.jpg?dl=0

https://www.dropbox.com/s/mzi70r8fycc9lsv/Dearborn%201%20Case%20Definition%202.jpg?dl=0

Cautionary statement: (Lyme is a clinical diagnosis)

https://www.dropbox.com/s/4q9lrpv5gp4zw6u/Dearborn%201%20Serology%20Caution.jpg?dl=0

References

1. Horowitz, R.I.; Freeman, P.R. Precision Medicine: retrospective chart review and data analysis of 200 patients on dapsone combination therapy for chronic Lyme disease/posttreatment Lyme disease syndrome: part 1. International Journal of General Medicine

https://pdfs.semanticscholar.org/5085/03c18ba7e0f39a0922dd9af7e05f272f2419.pdf

2. Characteristics of seroconversion and implications for diagnosis of post-treatment Lyme disease syndrome: acute and convalescent serology among a prospective cohort of early Lyme disease patients
https://link.springer.com/article/10.1007%2Fs10067-014-2706-z

3. TruthCures Brochure
https://www.dropbox.com/s/a1x6lwsktkp3x5w/NH%20Handout.pdf?dl=0

4. June 1994 FDA Meeting with Dattwyler Comment
https://www.dropbox.com/s/sxozktu3117enj9/June%201994%20FDA%20Meeting%20with%20Dattwyler%20Comment.pdf?dl=0

5. 2010 Letter Jose T. Montero, MD, Director NH Dept. of Health
https://www.dropbox.com/s/3pfjav6mtj50hkd/2010%20Letter%20Jose%20T.%20Montero%2C%20MD%2C%20Director.pdf?dl=0

6. Video recording of testimony from the Aug 23rd meeting
https://rumble.com/vmyzi9-nh-commission-to-study-testing-for-lyme-and-other-tick-borne-diseases-08.23.html

7. § 32.1-137.06. Lyme disease test result information State of Virginia
https://law.lis.virginia.gov/vacode/title32.1/chapter5/section32.1-137.06/

8. Lyme Disease: Recommendations for Diagnosis and Treatment
Daniel W. Rahn, MD, Stephen E. Malawista, MD
https://www.acpjournals.org/doi/abs/10.7326/0003-4819-114-6-472